The Seated View

Notes from Editing Hell

2012-01-31T10:00:00.000-05:00

And it continues… The editing, I mean. Although I finishedwriting The Book about six months ago, I am still editing and rewriting andthen editing some more. And it is kicking my butt.

I take great comfort in reading about other people's road topublication. It took Toni Bernard six years to write How to Be Sick (if youhaven't already, join RA Guy’s book club reading Toni’s book – it’s a great wayto read a terrific book). Laura Hillenbrand, author of Seabiscuit, has ChronicFatigue Syndrome and it took her 10 years to write her award-winning book.David Gaughran, author of A Storm Hits Valparaiso, took five or six years tofinish his novel and has detailed his struggles with the never-ending edits andrewrites on his excellent blog. These stories reassure me that I am not ahopeless slacker or so incompetent that I really need to stop any thoughts ofpublishing a book.

In related news, going through your book over and over andover again with a fine-toothed comb, looking for What Is Wrong will veryquickly convince you that you're a terrible writer and have absolutely nobusiness whatsoever even considering publishing a book.

In equally related news, I really miss writing. Editing isnecessary – eventually loathsome, but necessary - but it doesn't tickle thatcreative spot in my brain. Someone somewhere once did a blog entry in whichthey asked" why do you write?" I answered that I write because itmakes me happier than almost anything else in my life. There's nothing likedisappearing into a different world, noodling through a thought process,obsessing about an idea and wrangling it to the ground and onto the page. Andthere's nothing like it when it works and you know you wrote something good.

Discovering that writing is as much about editing ascreating the original piece has been a real eye-opener for me. This is a pointwhere you might find that my hair color is influencing my ability to think,because… well, duh. I've never done it to this extent, though. I've editedmyself, been edited by others, but nowhere near this kind of process. Thankfully, I am not going through it alone. MyWriting Buddy had the first go as I wrote chapter by chapter and then I wentover all of it myself again. The next step was passing on my manuscript toTrevor, whose fact checking was invaluable and then I went over all of it myselfagain. As we stand now, The Boy has it and as he is giving me back chapter bychapter, I go over each two more times and then start again on each individualsection. And it is dizzying.

One of the ways I check whether what I've written make sense,includes all the appropriate words and no Dragon misunderstandings is to readeach chapter aloud to myself. It's one of the best tools I have for checking mywriting. This method also checks that my sentences aren't too long - usingvoice recognition software has had the interesting effect of lengthening theamount of words I used within each sentence. It turns out that I blather muchmore when speaking then when typing. Who knew? (yes, I know - everyone who’sever talked to me were aware of this). How do I decide whether there are toomany words in the sentence? If I run out of breath halfway through it. Clever,no? The only problem with this is that when you read somewhere in theneighborhood of 50,000 words aloud to yourself several times, it increases yourlung capacity. My lungs are in better shape, but my sentences are gettinglonger.

I have seen different answers to the question "when doyou know you're done?" One person believed that you're done when you'resick of your book, another said when your spousal equivalent is sick of hearingabout it. I'm going to add one more: when my blog is sick of reading about it.So let me know when that time arrives, 'kay?

Going back to the saltmines now.

A Whispered Thank You

2012-01-27T09:30:00.000-05:00

I'm a lucky woman. Thanks to you, my post Sensitive to the D-Word won second place in the Best Blog Post category of the 2011 Canadian Blog Awards.Because of you, more people now know about disability discrimination. Thank you.

And why the whispering?

This is how determined your body can be to make you sitstill: Woke up Monday with a screaming back that didn't want me to move.Despite claiming I'd listen, I didn't – big surprise - and worked anyway. ByWednesday, my body was so disgusted with me that it upped the ante and gave melaryngitis. Since I can't write much without using Dragon Naturally Speaking towrite, this meant working wasn't possible. I sort of did anyway (tip: don'ttype if you normally have to use Dragon. Or so my shoulders told me yesterday).Saw my doctor for my Humira shot and discussed the voice thing. Shetold me to stop talking until it no longer hurts to do so. Exactly how I'msupposed to know that it no longer hurts when I'm not allowed to talkwas unclear.

No talking?? Cruel, cruel fate...

Citrus

2012-01-26T09:30:00.000-05:00

Show Us Your Hands! Establishes Founding Committee to Help Raise Awareness of Autoimmune Arthritis

2012-01-24T10:00:00.000-05:00

Show Us Your Hands! EstablishesFounding Committee to Help Raise Awareness of Autoimmune Arthritis

CHICAGO, Illinois (January 24, 2012)- Show Us Your Hands! is pleased toannounce the new collaborative effort of three leading advocates from theautoimmune arthritis blogging community. Lene Andersen (The Seated View) and Cathy Kramer (The Life and Adventures of Cateepoo) have joined forces with RA Guy (Rheumatoid Arthritis Guy) to organize creative community projects andeffective awareness campaigns aimed at increasing the public’s understanding ofautoimmune arthritis.

Show Us Your Hands! started as a communitycollage project in December 2011. The interactive digital collage andcommemorative poster include hundreds of photos of the hands of individuals wholive with autoimmune arthritis, and represent people of all ages from aroundthe world. This inaugural project serves not only as a symbol of thewonderfully supportive autoimmune arthritis community that continues to growand connect online, but also acts as a reminder that people who live with thesediseases should be proud of, and not ashamed of, their autoimmune arthritishands. New photos continue to be added to this community collage on a regularbasis.

Upcoming initiatives will build uponthe overwhelming success of and positive community reaction to this initialproject. The three members of the founding committee are currently working onestablishing an organizational roadmap, and in the coming weeks will beannouncing the details of the first of many upcoming projects and campaigns. “Readingthrough the responses to Show Us Your Hands! and viewing the photos of all thehands, I am overwhelmed by the strength of our community. Together we have built a relationship ofunderstanding and compassion to replace what for many has been a void. As Show Us Your Hands! moves forward, I amexcited to see that strength grow,” says founding member Cathy Kramer.

Autoimmune diseases occur when abody’s immune system mistakenly attack healthy tissue. In the case ofautoimmune arthritis a person’s joints are frequently attacked, resulting inchronic pain and debilitating inflammation. The most common autoimmunearthritis diseases are Ankylosing Spondylitis, Juvenile Idiopathic Arthritis, MixedConnective Tissue Disease, Psoriatic Arthritis, Reactive Arthritis, RheumatoidArthritis, Scleroderma, Sjogren's Syndrome, Still's Disease, and Systemic LupusErythematosus.

Show Us Your Hands! is aninternational awareness movement which serves to unite and inspire theautoimmune arthritis community. For more information, please visit www.showusyourhands.com. Show Us Your Hands! can also be found on Facebook and Twitter.

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I am thrilled to be part of this collaboration with RA Guy and Cathy. Already, Show Us Your Hands! has had over 700 submissions which tells you something about how much of a cord this has struck in the autoimmune arthritis community. Have you sent in your photo? If not, you can do so here.

Once We Were Caged

2012-01-23T10:30:00.000-05:00

This post is mycommemoration of the International Day of Mourning and Memory of the Lives of People with Disabilities. This is a day of remembrance of those who wereinstitutionalized, abused and killed for being different. It is a day toremember those who came before us and who fought hard to make the world abetter place for people with disabilities of all kinds.

I had been in the hospital for several years, waiting forhip replacements. It was the culmination of a long period of hospitalizations.Since I was diagnosed with juvenile rheumatoid arthritis, finally, at age 9after living with pain and swelling since I was four years old, I had spentmore time in institutions than out of them. And now, having had a double hipreplacements, I could sit up again, got a power wheelchair and halfway throughmy 16th year, it was time to leave.

This was also the time that one of the senior doctors tookmy mother aside and earnestly spoke to her about discharging me into anotherinstitutional setting, a group home for children with disabilities. Becausetaking me home would be "far too difficult." Because many others inher situation "would have given up." Given up their kids.

I wasn’t there, but I know my mother shot him down inflames. I wasn’t there, but I can imagine that she gave him The Look. The lookshe has that says more than words, that withers and shames. And she and my fathertook me home and gave me the biggest gift of all: a normal life.

I was lucky. I had parents who had strong opinions aboutwhere their children belonged and who fought hard against the pressure fromwithout to tuck me away in a place where I would be less difficult.

Difficult for whom? My parents? My extended family? Mycommunity? The doctors?

Difficult why? Because I needed care? Because I needed adifferent way to approach school, transportation and all the other things thatcome with a teenager’s life? Difficult because I looked different, liveddifferently? Difficult because my presence in the community, in society meanthaving to face the reality that not everybody is the same? Because it meant having to accommodate the different?

Even so, because there was no choice, I spent years in andout of hospitals, many of them in a rehab hospital on the northern coast of Denmark.It was there that I got a thorough education in what it was like to beinstitutionalized. Because there, they had a philosophy of dealing with thechildren in their care. A philosophy deeply grounded in the belief of coldprofessionalism, of not indulging our emotions, of not responding to pain, ofsquelching any expression of individuality.

There,we were all dressed alike in blue track pants and redsweaters. There they ruled our lives, keeping us in the dark about medicaltests and procedures. There you were expected to deal with the pain ofrheumatoid arthritis quietly and without fuss. There you bit down on the painof the needle going into your joints or suffered standing naked and alone infront of a strange man taking a picture of your body to record the progress ofyour disease. There you were expected to eat what was served without questionor complaint. There you suffered homesickness alone and without comfort. ThereI learned that crying doesn't change anything.

I was lucky. Most weekends, I got to go home to my family,to be surrounded by love. To have an antidote against the chill, against thegrating demand to not express what I felt, to be an automaton. An antidoteagainst the inhumanity that framed our lives in that building. Because of that,I managed to hold on to my soul.

I don't blame the parents who went before and who followedthe advice of doctors, giving their children to institutions. That was theworld they lived in. In that world, the rest of society wasn't made to beinclusive of different. In that world, you did what the doctor told you to do,because they knew best. Who I doblame is the medical and so-called caring professions who made those institutionsplaces with no warmth or emotion, places more like prisons, places of abuse andbrutality. Places that damaged hearts, souls and bodies, places that killed.Sometimes outright, sometimes merely murdering the chance to connect to allthat makes life worthwhile living.

And then the movement to deinstitutionalize started. Was itwith parents like mine who refused to believe an authority that told them theycouldn't cope with taking care of their child? Was it with those who escaped,somehow, into the world and told their story? Because of them, we now have theright to live integrated into society. The right to receive services likeattendant care that allows us to live independently and participate in ourcommunities. Not enough attendant care and sometimes, not good enough either,but it is there. So are other services, other agencies funded and mandated toassist people with disabilities of all kinds live independently.

Because of those who came before, we are here. We work, welove, we go shopping, we laugh, we go to restaurants. Because of those who camebefore, we now have laws like the ADAand AODA that guarantee our continued right to be here. Laws that enshrine theobligation of the norm to make room for the different.

We are here. Thank you.

As part of the lead-up to today, Dave interviewed Dana Masa, who co-wrote and performedShe Never Knew She Never Knew..

International Day of Mourning and Memory

2012-01-19T11:00:00.000-05:00

Dave over at Rolling Around in my Head is spearheading an initiative to create a day of awareness and remembrance called the International Day of Mourning and Memory of the lives of People with Disabilities. In his words, the day would:

"be one of remembrance of those whose lives were not celebrated or remembered, the lives of those who were slaughtered by care providers or brutalized to death by bullies. It would also be a day to remember the entire disability community - the elders who came before and who made the world different and better. It would be a day where a moment was taken to pause and reflect and remember."

If you want to participate, write a blog post about what this means to you for Monday, January 23 and let Dave know. There's also a Facebook page for the event.

The Unexceptional

2012-01-18T10:02:00.002-05:00

I have become a wuss.

There have been signs that I have deteriorated into a stateof perpetual whining, what with the repeated mentions about having no energy.It was starting to bug me, so the other day I asked The Boy for more objectiveassessment of my health status. And he said something interesting. Well, heoften says something interesting, but this particular thing was about me,making it even more interesting. Because it's all about me, y’know.

The Boy said that I was miles ahead of where I was two yearsago and I knew that. It's something I'm grateful for every day, this part wheresomehow, I keep getting stronger. However, instead of basking in this statement,I asked for details about the past year because to me, it feels as if I neverquite got over that flu I had last June. He opined that my energy fluctuationsseem different - instead of having two weeks of mad energy and then collapsingfor another two weeks, I seem to be more up and down every few days or so. Atwhich point I opined that maybe if I didn't burn through the energy when I haveit, it wouldn't fluctuate so much and this led to another epiphanette (i.e., awee epiphany) that perhaps now that I have a better handle on managing what Ido in terms of my pain levels, my next challenge is to do the same for energylevels. But that's not the topic of today's post. My whining is.

Because The Boy also mentioned that when I am in pain, Iseem to not cope as well as I did before, wincing more and being more verbalabout my unhappiness about the pain. And I've been thinking about that.

I seem to be experiencing a period of doing pretty well. Idid pretty well last summer, had a reminder of what flares of both RA andfibromyalgia are like in the fall, but seem to have wandered away from that. Itmight be that we are having an unusually warm winter, the benefits ofultrasound, a decent level of Humira or something else entirely or all of theabove. The bottom line is I'm doing pretty well (and knocking wood franticallyto guard against jinxing myself by saying so publicly). Since last summer mybody has decided to react really strongly to medication, to the point that Itake almost no opioids and when I do need a bit of help, one-third of a TylenolExtra Strength will usually do the trick. One third. That's all. If I take morethan that, the side effects are very uncomfortable.

Which brings us to the cause of the whining. When you have alot of pain all the time, it becomes part of the background noise, thesoundtrack to your life. When you have a lot of pain all the time, you adjust yourexperience of it by putting on filters that soften or mute the messages yourbody sends you. In my post about pain scales, I talked about how people wholive with chronic pain hardly ever experience no-pain and therefore, theirstate of 0 is what for others would be a 2. When that happens, the entirereporting of pain becomes skewed - your 3 is a healthy person’s 5, etc. Whathas happened in my life is that as the constant high levels of chronic painbecame more like constant fairly medium pain levels, my perception of my painsnapped back into almost-normal. All of a sudden, the pain that used to be a 3is now a 5 and let me tell you, it's a bit of a shock to have your paintolerance messed with like that.

I have been listening to a CD called Great Conversationswith Michael Enright. Enright is the host of CBCRadio’s The Sunday Edition and the CD is a collection of interviews with somepretty great writers. One of the segments is Enright’s conversation with SalmanRushdie in September 2002 and they talk about the before and after of the fatwa- what happens in the life when you are under the threat of death, shadowed byburly bodyguards and now travel unencumbered. Enright asks "Do thosethings stay with you? Is there still a kind of symptomology that follows on?"Rushdie replied that it doesn't. "The urge towards normality is sopowerful that regaining normal behaviour happens like snapping an elastic band,it happens more or less at once. There were one or two days where I felt a bitweird standing on the sidewalk hailing a cab after years of having armouredcars, but it felt like a treat … within a couple of days - literally one or twodays – the feeling of normality came back, it became just catching a taxi andwhy isn’t there one."

He went on to say something that put everything into placefor me: "Our desire to go back to what is unexceptional is so great thatwe adapt back to that with high speed."

And that's it. I am currently experiencing a period of theunexceptional in terms of pain levels. It became normal so quickly that myexperience of the pain I do have also normalized with the speed of light. I nolonger marvel at how little pain I have, instead I wince when I feel stiff andsore. It no longer astonishes me that I can fall asleep – and stay asleep - withoutdrugging myself senseless, instead I complain when I need to take a sliver of amuscle relaxant. Since I no longer have to deal with high levels of pain, whenthe pain does spike, I feel it much more keenly. As there currently is no needfor an ironclad pain tolerance, I no longer have one.

I'm really hoping this sticks around. Although, I might tryto be less vocal about how affronted I am when the pain pokes through.

This Friday January 20 is the last day to vote in the Canadian Blog Awards, My post Sensitive to the D-Word is nominated in the category of Best Blog Post of the this year. If you liked it, please vote! Also check out the other nominees - many are terrific. To mention a couple, Screw Bronze! is up for Best Health and Best GBLT Blog and Rolling Around in My Head is up for Best overall and Best Personal Blog.

Photoshoot

2012-01-16T10:00:00.000-05:00

I'm plotting a certain something related to The Book. Something that requires proper photographs as opposed to snapshots, so I sent out an email to the talented Raff, a friend of my sister's, who has her own production company. Did she know a photographer? Did she ever. She put me in touch with the equally talented and lovely Sophie Kinachtchouk - take a minute to do drool at her work. She also does amazing wedding photography. I cannot say enough good things about Sophie - she's easy to work with and if you're at all self-conscious in front of a camera, she makes you relax and have fun in no time.

These are a few of the great shots she took.

We decided to wander out and about in the neighbourhood to find fun places to shoot - it was a lovely day. Halfway to the corner, I realized my funky new glasses are Transition lenses.So we pretended I was wearing contacts again. I have only very fuzzy mental images of Sophie pointing a camera in my direction.

Thank you, Sophie! I had a blast and love the shots!

The Best We Can

2012-01-12T10:00:00.000-05:00

Back to work I went on Monday, humming that song from Snow White(except I always thought it was "it's off to work we go" and now itdoesn't make any sense at all in this post). Okay, it's entirely possible that I wasn't humming - I spent my week’s vacation having a massive sinus infection andfeeling pretty miserable for most of it. Naturally, I felt better justin time to go back to work. Given how often that happens to me, I may stop taking vacations.

Anyway! By Monday evening, I was already exhausted. I'm a lot moretired than I think I used to be last spring. It's possible that I'm doing morenow, maybe I'm not fully topped up on Humira after all or maybe it's somethingelse altogether. All I know is that without the biweekly B12 shots, I'd betoast. And I keep wondering how other people do it. Not healthy people, becauseI don't expect to have the same energy level as someone who doesn't have RA andfibro…

OK, that's not entirely true. Based on my endless list andpropensity to involve myself in interesting things, I obviously expect to havemuch more energy than I actually do. Don't you hate it when you screw up yourown argument in the middle? The point is I'm frustrated to no end. I have abunch of things I'd like to do, not enough time to do them and although my painlevels are fairly decent (knock wood), the tired is kicking my arse. I'vegotten far enough that I admit I have a problem, made a resolution to find away to work smarter, not harder, but am still sort of stuck in the theoreticalof that.

Yesterday, at the end of my HealthCentral interview withKelly from RA Warrior, I asked if we could detour into something personal. Shesounded a teensy bit cautious – the whereis this nutbar going hung thick in the air between us - butagreed. So I asked her the infamous question.

How do you do it all? And not in a superwoman kind of way,but how do you do it all when RA and all its attendant hiccups get in your way?

"I don’t do it well," she said. And right there, I could feel a weight lifting from my shoulders.

She went on to say "I go throughphases of being good to myself and give myself the rest I need and then Ifeel this urgency and work into the wee hours of the night and feel veryanxious about it." And this is the point where both of us almostsimultaneously said "and then you crash." She told me of having been12 weeks behind on her email and now "only" six weeks. Kellytalked about compartmentalizing, of every now and again actually admitting thatyou can't do it all and saying no to opportunities that come your way (this could take some practice). Thenshe mentioned having to contact someone asking to delay a deadline due tohaving overbooked herself and getting a huge gift with the replye-mail. Because the person wrote back "what a blessing it is that you haveall those things going on."

Wow, right? This was a reminder to me to turn theprism, to look at it differnetly. About not berating myself because I can barely keep up, about notgetting caught up in the stress and anxiety, but, in Kelly's words"celebrate that this many people and opportunities are in my life."

I am a lucky, lucky woman. Also very tired, but I'm workingon that.

This part of this conversation with Kelly was one of thosegems, a moment of shining realization that I am not alone. That down there incentral Florida, there's anotherwoman who knows exactly how I feel and this normalized it for me. I no longerfeel guilty (not much, anyway), have forgiven myself for not having the energyof 22-year-old professional athlete (for now, anyway) and remembered that allwe can do is our best. Doing your best doesn't mean doing everything on yourlist. Doing your best means doing what you can with the resources available toyou. No one can ask for more, least of all yourself.

This is what the Internet does- it affirms, it liberates and it empowers.

And I realized one more thing. That on the surface, a lot ofus probably look like it's all effortless. Like ducks. You know what Imean - that quote that we all know and which apparently is by Michael Caine:"Be like a duck. Calm on the surface, but always paddlinglike the dickens underneath."

We’re not, though. But we do the best we can.

Friday January 20 is the last day to vote in the Canadian Blog Awards, My post Sensitive to the D-Word is nominated in the category of Best Blog Post of the this year. If you liked it, please vote! Also check out the other nominees - many are terrific. To mention a couple, Screw Bronze! is up for Best Health and Best GBLT Blog and Rolling Around in My Head is up for Best overall and Best Personal Blog.

RA Warrior: An Interview with Kelly Young

2012-01-11T10:43:00.002-05:00

Every now and again, I get to do something for my job that doesn't feel like work. Yesterday, I spoke to Kelly from RA Warrior - after years of reading each other, we finally met on the phone. It was more like a chat with a friend than an interview. I love my job.

"'Imagine if the first thing you found when googling RA was the opinions of patients..."

Kelly Young is a woman with a mission. She would "like to see other patients do better, learn more and be empowered." To that end, she is a strong advocate and works hard to provide people who have RA with accurate information."

You can read the rest of the interview here.

Faces, Earthquakes and Ebola: Making Pain Scales Work in Real Life

2012-01-08T18:44:00.002-05:00

RA Warrior is doing ablog carnival about pain scales. This is my contribution.

"Please rate your pain on a scale from 1 to 10." Said by many doctors and it soundspretty simple, right? It isn't. When you live with chronic pain, rating that painbecomes a really complicated question.

Pain scales are an attempt to assign an objectivemeasurement to a subjective feeling. And it gets very subjective and imprecise. Let's start with the issue that we all havedifferent pain tolerances - you might find the pain of a bee sting takes up alot of room in your mind and body, whereas the person next to you shrugs itoff.

Then there are filters. When you live with chronic pain, youlearn to filter out the messages your body sends you unless they're reallyannoying. A pain scale doesn't really start at 1, it starts at 0, i.e., no pain.When you have pain all the time, your lowest level of pain takes over the 0spot, but it is not the same as someone else's no-pain. You slap some filterson things and pain doesn’t really get noticeable until it’s about a 3 or a 4.

When you live with pain on a chronic basis, your own paintolerance waxes and wanes, as well. At times - especially in the beginning ofyour life with pain - you might rate it at a higher number because it's the mostpain you've ever had. As other joints join the circus and as your disease getsworse, you begin to realize the truly interesting upper reaches of pain and youadapt again. What was a 7 is now a 5. As Kelly mentioned, this means you adaptyour reporting and sometimes your experience of pain so it fits into the scale,instead of the scale fitting into your experience. One of the ways I've personally interpreted the pain scale to do this is to get really specific about what happens between each number. As I've gotten more experienced in the ways of pain, I've realizedthat in order for those interesting upper reaches of pain to fit within the scale, there can't be an equal interval between each number. Instead, each numberreflects a much larger increase in pain. For instance, the difference between a1 and 2 is significantly less than that 5 and 6. Pain is like earthquakes, thisway, but I haven't seen that comparison of pain scales to the Richter scaleanywhere.

Enter the faces. In an attempt to deal with thenot-at-all-objective and really-hard-to-generalize 1-10 scale, the Wong-Baker FACES Pain Rating Scale was developed. This associates the number on thecontinuum with faces and description of pain.

And it’s better. It even specifies that crying is notnecessary for pain to be rated a 10. This scale allows (somewhat) for the adaptation thathappens as you pain tolerance goes through its own ups and downs. For instance,having really high levels of paying for a protracted period affects yourability to cope with it and that can also messes with your pain tolerance. If youlook at things as objectively as possible, your pain may have been an 8 forthree weeks, but because you are worn down and raw, your reaction may be thesame as if it were a 9. The Wong-Baker is better, but it's not perfect, itstill has too much fuzziness for my taste, the report of pain too dependent on your own coping mechanisms to be a reliable measurement.

And then there's how the pain itself has different faces, dependingon its origin. How can you compare the sharp, clean, localized pain of surgery (The Ginsu)with the Dirty Cotton pain of an RA flare? When the pain feels completelydifferent than another type of pain, can you accurately rate its intensity? ButI digress into philosophical…

So what's missing?

One of my favorite alternatives is Hyperbole and a Half’sadapted FACES with their accompanying description (this is where ebola enters the picture). Go take a look - it'sbrilliant. It works because of the descriptions. For instance, 2 is describedas "I probably just need a Band-Aid" and 10 is "I am activelybeing mauled by a bear." Now that's helpful and getting closer to mypoint.

The best pain scale I've ever seen was when I had a routinemammogram-equivalent test at the Breast Centre at St. Michael's Hospital in Toronto.As I was waiting for the doctor, I noticed a poster with an adapted version ofFACES on the wall. With each face - and there were 11 of them, not six - was anaccompanying description of the impact of the pain. Not just the "hurts alittle bit" or "hurts whole lot" from the original, but wordslike "I need to take pain medication," "it’s difficult to getdressed and get on with my day" and "all I can do is rock andmoan" (this is not an accurate quote - I didn't think quickly enough toask for a copy at the time, but will at my next checkup).

And that's exactly what's missing in pain scales. When thedifference in pain tolerance, coping mechanisms and general mood can affectyour rating from day to day so significantly, it effectively renders a numericscale invalid. However, basing the assessment of the pain on the impact it hason your ability to lead your life is truly meaningful. It speaks to the centralissue of living with pain, namely the living with aspect. Whereas anumeric scale may work in an acute case, such as a sprained ankle or brokenarm, for those of us who live with it every day, the only thing that matters ishow it interferes with your life.

And that's my answer to Kelly's question. I'd like to see somethinglike the St. Mike's Breast Centre’s pain scale become the norm. In order forthat to happen, it can't be led by doctors who have only a theoreticalunderstanding of pain. Instead, this kind of change has to be driven by thoseof us who live with chronic pain and who know pain from the inside.

The AID Principle or How to Open a Door

2012-01-05T12:59:00.002-05:00

Sometimes, you meet someone who really gets it.

I was swinging by my dentist with the latest payment on thecrown that cost enough that I'm sure it's made of a giant ruby. Since nobody was about on thesidewalk, I knocked on the window and waved madly to catch the attention ofsomeone who could open the door for me. A patient in the waiting room saw meand made gestures requesting whether I wanted help with the door. I indicated in the affirmative and she came out to join me.

Helpful Person: is it best if I hold the door open from hereor come outside?

Me: Come outside, please.

H.P.: that's what I thought. When my kids were in a strollerand people would hold the door for me, the other way would be more difficult.

And then we laughed companionably, continued chatting and I entered mydentist's office without any further issues.

I would like to nominate this woman for Best Assist of the Year for demonstrating a thorough understanding of the 3-stepprinciple of helping a person with a disability (well, anyone really). I callit AID.

Ascertain that the person needs help. In this case, the knocking on the window was a pretty obvious sign and when she mimed helping with the door, my smiling and nodding like a demented woodpecker further cemented the deal.
Inquire how assistance will be most helpful. Instead of insisting to do it her way (as in another recent experience with someone desperate to help), this H.P. asked which way she should open the door. Many people stand inside and push the door open with their hand. This tends to only be helpful for the ambulatory. Unless you’re Hercules – and most people aren’t – it’s difficult to push the door open as much as it needs to be. More importantly, as you drive the wheelchair through the door, they will need to get their feet out of the way and this means putting less pressure on the door, resulting in a hopeless tangle of door and wheelchair. Taking a few steps outside, getting out of the way and holding the door fully open is usually best.
Discover that you can easily associate a situation in your own life with the present one. Sharing a commonality makes the whole thing easier. This particular H.P. realized that using a wheelchair was very similar to traveling with a stroller and instantly remembered what was most frustrating about that experience.

Simple. Now we just need to tell the world.

Real RA: It's Not Just About the Jar

2012-01-03T12:18:00.000-05:00

The drug commercialslike to show couples walking on the beach with a dog (it's always a beach witha dog), but real RA is not like that. The image of remission is a return tosparkling health with no lasting effects, but real RA is not like that. This isthe first in new series of posts about the ways RA affects your life, theunvarnished version.

Last week, Kelly over at RA Warrior tweeted a link to a postabout the silly things people with RA say. It’s a brilliant list of the overlyoptimistic things that come out of our mouths, such as committing to beingsomewhere early in the day (impossible because it takes a while to get goingwhen you have RA) or the "me do it" ridiculousness that inevitablybrings about a flare in symptoms.

Opening jars - or rather, the inability to do so - is oftenmentioned as the ultimate example in frustration, smacking into your limits andplain humiliation. For Kelly, it's not a jar, it's a set of heavy blinds. Forme, it's changing batteries in various electronic doodads. I can deal with afew – my camera and the remote controls - but most of the time, changingbatteries is beyond me. Well, the actual digging batteries out and puttingbatteries in is usually doable, but getting the blasted cover off whatevercontraption I'm wrestling with is impossible. It's an annoyance, but what's thebig deal? I have attendants coming in to help me, I have friends and family aroundand in the last couple of years, The Boy has been a wonderful addition to mylife, not just emotionally, but practically, as well. So far, so good. Butthere's one thing you can't ask just anyone to help you with, especially inthose single pre-boyfriend years.

The vibrator.

Doctors don’t like acknowledging that we’re sexual beings,but just because you have a chronic illness or disability doesn't mean otherbits of you have gone to sleep. However, when your hands, elbows and shouldersare wrecked by RA, technical assistance can be necessary during moments ofgetting in touch with your baser instincts. So I did what any liberated modernwoman would do: found an accessible and disability-friendly “adult” store,dragged a friend along with me and giggled my way through a conversation withthe salesperson to find the best vibrator for me. Did you know that the bestway of checking whether the intensity of a vibrator is right for you, youshould buzz the area between nose and mouth? It’s amazing what you learn insuch places…

Fast forward for quite a while to a time where it becameapparent that my new friend needed a change of batteries. I did what I usuallydo and tried opening the infernal battery compartment and not surprisingly,couldn’t. And that was the start of an extended thought process in which Iconsidered every single person I knew for the role of potential Vibrator BatteryChanger (VBC).

My mother. Are you kidding me? We have an excellentrelationship, even make jokes about sex every now and again, but ask my MOTHERto be VBC?? No. Can’t. Need therapy now.Lots of therapy. She probably does, too.

My sister. A definite candidate, but she lives in anothercity and doesn’t visit too often. When she does, it's for family events and her husband’s with her. "Excuseme, family and John, I need to borrow my sister for a private moment while we exchange batteries inmy vibrator. That I have brought with me to this family lunch. In my purse." Nope. Doesn't work.

Attendants. Well, they are supposed to help me with tasks Ican’t do myself, so theoretically they’d be good candidates. However, they arealso notoriously incapable of keeping stuff to themselves and this? Would bereally excellent gossip. I’m not prepared for the entire staff, female andmale, knowing I have a vibrator and, based on the need to change batteries, thatI have used it. Just. Not.

Friendly neighbour who occasionally helps me out withvarious practical tasks. Nope. Not going there. So not. Considered andeliminated within a nanosecond. Above and beyond good neighbourship.

Friends. Well. Hrm. Alright then. What kind of friend couldyou ask this? Someone close, someone with whom you’ve shared deep dark secrets,someone who is comfortable with the topic of sex, will keep it to themselvesand after the deed is done, is capable of pretending it never happened. I hadseveral candidates.

The perfect candidate was my best friend - we've shareddecades of ups and downs. And after all, a really good girlfriend is someonewho’ll hold your hair when you throw up after having had too many drinksbecause you saw your ex with his new girlfriend, right? (I think I’ve watch toomuch Sex and the City - this has never happened to me and not just because myhair is short enough to be out of the way on its own) However, she was a singlemother with a full-time job and we didn't see each other much in person, so Ihad to move on. Somewhat belatedly, it was becoming clearly to me that I had toadd another selection criteria: lives in town and visits regularly. At thetime, most friends fitting this description were men.

Right, then.

Some people say men and women can be friends, that sex isalways in the way and I don't agree. However, asking your heterosexual malefriend to change the battery in your vibrator would definitely put sex right inthere, leading right to potentially awkward moments. Male friend w/partner?Thankfully, a lot of women get that men and women can be friends and adopttheir partners’ female friends as their own. Still, this could be crossing theline (really? You think??). Gay male friend? Not a bad option, as long as youcould get over that thing about asking a friend to do this. Which, as you mayhave gathered by now, was well nigh impossible for me.

It took a while, but in the end, I did ask a friend. Who tothis day blessedly pretends it never happened.

Resolved

2012-01-02T10:30:00.000-05:00

It's commonplace to make promises to yourself around thistime of year and normally, my primary promises to not get caught up in theresolution obsession. Too often, it leads to a severe case of self-loathing asyou take stock of your life and find it wanting, making promises to yourselfthat you don't keep. When you look at a brand-new sparkling year, thoughts ofchange should be about something more than limiting your intake of chocolatechip cookies, shouldn't it? It should be something that, to borrow a phrasefrom myself, honours your life and the people you love.

To that end, I've had some thoughts…

Last week wasn't bad. I was counting down the minutes tohaving 10 glorious days off and trying to get every item on my to-do list done.For once, I had been reasonably realistic, meaning there were only about 20%more items than I could feasibly do and, more importantly, I was aware of thisfact. Still, I was tired - the holiday season kicks butt. On Wednesday, I wentto see my doctor to get my B12 shot, something we've increased to twice amonth. At some point Thursday afternoon, I realized I wassimultaneously writing two posts and answering questions on HealthCentral, thatone of the posts was pretty funny and that whenever I wasn't actively dictatingto Dragon, I was humming. While taking a break for lunch, I realized that mybrain felt nimble and fast. I felt like one of those circus plate spinnershaving several plates going, but not in that way where you're expectingeverything to crash down around you any minute. No, this felt as if I was incomplete and supreme control of every single plate, knowing exactly when to setthem spinning again so they worked together in a synchronized, balanced whole.I felt like Superwoman. And it was because of that B12 shot. It is a weemiracle in a syringe, a raspberry-coloured shot of pure energy that gives meback my brain and enables me to dance on the highwire.

Resolution #1: continuewith bi-weekly B12 shots.

The next day, I woke up exhausted and with a pea soup fog inmy head so dense that it took most of the day to get even halfway back tonormal.

Resolution #2: justbecause I have a lot of energy, doesn't mean I should spend all of it in onego.

And in a perfect segue… Someone said that doing the samething over and over again and expecting different results is the definition ofinsanity. Some people attribute this wise observation to Freud, others toEinstein (my vote is on the latter), but regardless of who said it, those arewords that can be applied to pretty much any situation. For instance, myinability to notice when I’m running low on energy and should sit still. A couple of times, it's led to me getting sick and I'd very much like to avoid that in thecoming year. It's pretty clear by now that I will probably always work more thanI should. Instead of continuing my attempts change who I am, it seems a betteridea to focus on how I work. Leading to

Resolution #3: worksmarter, not harder. It might behoove me to remember I have a chronic illness and act accordingly in terms of managing my energy.

Exactly how to accomplish this is currently a bit vague, butwill probably include the following:

Compartmentalize when I work on what. For instance,HealthCentral is my weekday job, weekends are for my own various projects.
Don’t work past 9pm
Be proactive, not reactive
Acquaint myself with saying No

I’m open to suggestions – how do you work smarter?

When I look back on 2011 I’m mostly happy with the year. Alot of exciting things happened, but there was also the mysterious and repeateddisappearance of time. Weeks would fly by and I've come up for air, look aroundand wonder what happened to a month, sometimes two. Something important butlost in the shuffle: spending time with friends. When you start every e-mail toyour friends with "I'm sorry it's taken so long for me to reply…" it’sa sign that you've lost sight of the essential. Work might be exciting,absorbing and time-consuming, but it is no substitute for people.

Resolution #4: maketime for friends and family.

What are your resolutions?

Leading with Joy

2011-12-30T10:42:00.000-05:00

"You must be very angry."

This was the (rather leading) question of one of thejournalists I spoke during my brief tenure of being a spokesperson for theHealth Council of Canada. We'd been discussing the eight months I waited forfunding approval for Enbrel, of how the RA ate my life and made me moredisabled, to the point that I never regained the ability I had before theflare. And likely never will. The reporter seemed to very much want me to beangry, to hold forth with a blistering indictment of the system, to grieve theloss still.

And I'm not, I didn’t and I don't. I think I may even havelooked a little puzzled at them before I answered. Because seven years ago, Ithought I was going to die. At this time seven years ago, I thought it mightvery well be my last Christmas. And seven years ago, I was absorbing everythingI could, mentally recording and honouring my life and the people in it becauseI had begun to say goodbye to the world.

I didn't die. I found a medication that gave me back my life.And sure, it’s taken me seven years to fight back, to get to where I am andsure, I’ll never get back certain abilities, but y’know?

I thought I was going to die. And I didn’t. I thought I was losing my life and instead, Igot a second chance.

The reporter tried again, from a slightly different angleand I must've sounded like some blessed-out nincompoop, because there was a smileon my face and my answer kept being "I thought I was going to die and Ididn't." Eventually, they gave up but I could tell from the expression ontheir face that they didn't understand.

There are things I cannot do anymore, things I used to loveand would love to be able to do still. Using my manual wheelchair and poppinginto a friend's car for a road trip. Packing a suitcase, grabbing my passportand taking a plane to another country. Getting through a day without having tolie down for a couple of hours in the afternoon. And so on. I will happily offermyself up as a poster child for a campaign to reduce the wait times for fundingto medication, would share my story everywhere if it could help protect others fromlosing ability and health. But I have no intention whatsoever to devote my lifeto regret.

I could wallow in whatifs, look at what I don't have, take a ride on the bitter bus. After all,it's what you're supposed to do when bureaucratic nonsense derails your life, isn't it?But here's the thing… When you are given the gift of life, why would you wastethat gift with anger? When you are given a gift as profound as getting backyour life, you jump into it with both feet, you fly into the mystery and everyday is a bit delirious with joy.

At this time of year when I look back on for another year ofliving and forward to the adventures of a new year, it keeps coming back to this:it's all relative. I have had seven years of life I didn't think would happenand there is every reason to believe I will have many more. Time to share withthe people I love, to pursue my dreams, to laugh at Lucy's antics, to meet upwith friends both in my living room and on the Internet and to see the sunshining through the tender leaves of spring.

It is all about the joy. Thank you for sharing it with me.

Happy new year!

Christmas Shenanigans

2011-12-27T10:30:00.000-05:00

Coming up for air after a weekend of immersion in the Christmas spirit is an oddly disconcerting experience. It's back to work and I'd much rather stay within the warmth and joy of what in Danish is called Julehygge. In other words, hygge specific to Jul (Christmas). It's a good place to be.

The Boy and I started early on Friday (aka Lille Juleaften - Little Christmas Eve) and went to the Distillery District to see the giant Christmas tree. walking through the narrow alleys, around the old buildings and rattling across uneven cobblestones made it feel much more authentic, almost Danish.

Saturday morning, we opened a few presents and gave Lucy some tissue paper. She is very, very fond of tissue paper.

In the evening, we all congregated at my mother's for an evening filled with wonderful food, companionship and everything else that makes for a perfect Christmas. This year, it included a visit from a very small vampire. No, not really, this photo was taken during an extended part of the dinner when it all deteriorated into making fart noises. Surprisingly hysterical.

After dinner, Ken entertained the kids while others cleaned up

And then there was carol singing, in both English and Danish.Scott, Michele's youngest, joined us for the first time and jumped up right in, singing along in a language he's never seen before and based on his ability to pronounce these strange words, we suspect he may have been Danish in a past life.

He also brought a big Rubbermaid container filled with Lego to pass on from him to the kids. The rest of us had a hard time not diving into the pile

Morgan got a puppy. Battery-operated, but still a huge hit. She pronounced it "the best present!"

Liam has lost his first teeth and was very proud

And at the end of the night, a Christmas cuddle.

A Very Glædelig Jul

2011-12-23T10:00:00.000-05:00

And a pronounciation guide on how to say Glædelig Jul (aka Merry Christmas)!

Have a wonderful everything!

The Girl in the Bubble

2011-12-21T10:00:00.000-05:00

48 hours after our last weekend together, The Boy came downwith the plague.

Okay, so maybe it wasn't bubonic, but it certainly was aparticularly pestilential case of the flu. The Boy rarely gets sick – he’s oneof those annoying people with an iron constitution – and when hedoes get sick, it's usually short-lived and mild. This one wasn't. This oneabsolutely flattened him.

How I managed to avoid catching this is beyond me. He and Iget pretty friendly when we're together and yet somehow, he's the one who sankinto a soup of misery and germs while I motored on with my life. I'm sure youcan imagine the frantic knocking on wood that's going on as I'm writing this.My neighbours might start suspecting an infestation of woodpeckers.

By the time The Boy comes back into my general vicinity thisFriday, it'll have been close to three weeks since we've seen each other.Because I have a suppressed immune system and that means staying far, far awayfrom sick people, no matter how much I love them or how much I may need to seethem, either for personal or professional reasons.

It can take a while to train others to understand what asuppressed immune system means. Most people don't seem to quite get it andmaybe that's because most people don't understand what RA is. Even before I wason a medication that suppressed my immune system, I would get harder hit byillness than most other people. Now? I had the flu in June and it's taken meabout five months to get reasonably close to my normal state of health.

These brilliant medications that help protect our joints andorgans from damage come with a price and it isn't just side effects. It'sisolation, a form of reverse quarantine, if you will. Most of the time,reasonable precautions, a bit of extra attention to cleanliness and a truckload of hand sanitizer for use after handshakes and touching public surfaceswill keep you protected from catching whatever's going around. But every now and again, it's time to headinto the bubble.

People don't get it. Since I wasn't hangingout with The Boy this past weekend, I made a lunch date with a friend I've known for years. We’dmake the arrangements by e-mail so I wasn't prepared for her sounding just aspestilential as The Boy. Both of them coughing with everyother sentence and so stuffed up they sounded as if they were at the height ofthe flu, despite both having lived with it for two and three weeksrespectively. I begged off, claiming suppressed immune system and not beingwilling to take the risk. My friend, who you'll remember has known me foryears, told me that she "wasn't offended" and that she "hadn'tthought about it."

And that's it in a nutshell. Because people do get offendedwhen you cancel yet again because they're sick. It's just the sniffles, afterall. Or they've had it for a week, so they shouldn't be contagious anymore.What for them may be a minor case of the sniffles could cost those of us who live with RA and take immunosuppressants three weeks or more, potentiallyhospitalize us. If gets awkward when you have to yet again explain to someonewhy you have to leave or (to an attendant) why they have to wear a mask whilethey are assisting you with your care or be extra diligent about handwashingafter touching raw fish (yes, seriously. A healthcare worker who doesn'tunderstand). Time and again, I've been in a situation where I have to weightrying to explain to someone why I'm backing up as if they have just turnedinto a Typhoid Mary versus risking catching their germs. It's taken me a longtime, but I've finally stopped being polite and now my need to stay healthy ismore important than their need to not be offended.

And people do get surprised, because they don't think aboutit, often despite repeated education about the reason you have to be cautiousto the point of paranoia. To a point, I don't expect them to - they don't livewith this, I do - but there is also another point when you start wondering ifmaybe they don't believe you. I am obviously disabled and it's therefore easierfor me to persuade people that I'm sickly and fragile, but for someone who's RAis largely invisible, there is a real barrier to understanding. Because theylook fine, don't think? So they can't possibly be sick or in pain or have adelicate constitution.

I've been thinking about how to help build that bridge betweenour reality and yours and I'm a little stuck at the moment. Could be because ofholidays are taking up most of the room in my head, but so far, the best ideaI've had is walk around ringing a bell and chanting "unclean, unclean." Notat all related to the truth, but guaranteed to have an impact.

Do you have a better solution?

Talking About the Money

2011-12-19T10:00:00.000-05:00

"You assume that it's all covered."

It was at the tail end of my interview with the CBC- no, not shameless name dropping, actually relevant to this post. (shameless self-promotional links to twoof last week’s interviews at the end of this post). I was chatting with thereporter and cameraman as the equipment was being put back in their respective bags.The discussion was about the ripples of chronic illness and disability, how itgoes beyond just medication costs and into things like adaptive equipment andtools, wheelchair repair and automatic door opener repair.

And there is that assumption that it's all covered, at leastup here in Canada,land of universal healthcare. Or that it's cheaper, somehow. That people whohave health challenges don't have to add financial challenges to their lives,too. Because that's not fair and we like to think ourselves as a fair country.Come to think of it, most of the Western, industrialized nations also like tothink of themselves as their countries (exclusion of other countries not basedon anything but my ignorance of what goes into their feelings of nationalism).

I wasn't the only one talking about the money this week. RAGuy also wrote about the cost of living with a chronic illness, a cost that isso steep that he can't afford to move back to the US.But it goes beyond the fact that medications, equipment and whatnot aren't coveredand right into charging higher prices. As Dave explains in his post about thecost of disability yesterday, if you’re disabled and want to have a bit of alife, the kind of life that might include staying in a hotel room or going to ashow, you have less choice and have to pay more.

This is where I started to wonder about the assumption.About why it is possible that people who often more vulnerable than most can beput in a position where they experience financial discrimination and extremefinancial hardship without anybody saying much. And I think I’ve found the oneof the reasons.

It's because no one talks about money.

When I was asked to be involved in the release of the HealthCouncil of Canada’s latest report, I struggled with my decision to write aboutthe financial aspect. It's not something I've discussed before, despite my goalof emotional honesty on this blog. I've written about some pretty intimatedetails about my health and my thought processes about disability, RA andpretty much anything related to that, but aside from the occasional joke aboutbeing a starving artist, never about the money. Because you don't, do you?Talking about the money is just Not Done, it's not polite. It's not polite totalk about how much you make and it's definitely not within any rules ofetiquette to discuss having trouble paying your bills. Because you're supposedto be able to manage financially and if you can't, it's a personal failing andthere's a hefty dollop of shame involved in it.

Except that makes no sense at all in the context of having achronic illness or disability. Not only does your disability affect how much - or whether - youcan work, but as both I and RA Guy wrote about on Tuesday, RA is expensive. Howmuch money do you need to earn in order for a monthly bill of $400 worth ofmedication (for instance) not to have a serious impact on your budget? Itdoesn't make sense to feel guilty about not being able to manage that or feelshame that you have a debt you can't pay off because of a health condition thatis beyond your control. Yet, there they are, both the guilt and the shame.

And that's why I talked about the money. It's why I'm gratefulthat RA Guy and Dave also chose last week to talk about the money. Because we needto start talking about these unreasonable costs and the impact it has not juston individual lives, but in the larger picture, on the economy and our society.We live in a culture where we are expected to pull ourselves up by thebootstraps and where those who can't are viewed with a certain amount ofjudgment. I'm not going to start ranting about why that is wrong in general(because someone else did so brilliantly), my argument today is specificallyregarding those of us who live with chronic illness and disability.

I believe it is inappropriate, unreasonable and downrightdiscriminatory to apply such expectations - and the judgment that usuallyfollows close on the heels of those expectations - to people who simply cannotgo out there and scrub other people’s toilets in order to financially pullthemselves up by the bootstraps. Because most of us would do just that. We'drather be working, but we can't and then what do you do? When the only thing that stands between you andimprovement and increased independence is the money that you can't make, Is it fair to bepunished financially or jeopardize your health because you can'tafford the meds you need?

We must talk about the money. Not talking about the money iswhat necessitates something like the Hardship Fund. Not talking about the moneyis what allows our City administration to put the Hardship Fund in danger. Nottalking about the money puts people's health in jeopardy - according to theHealth Council report, 23% of sick or Canadian had skipped doses are not filledthe prescription because of cost. Not talking about the money ends up costingus more because when people don't take their meds, their health suffers and theyneed to use the health care system more.

We need to talk about the money. We need to take a good,hard look at what we believe should happen in case of serious illness, chronicillness or disability, both from an individual and a social perspective. If weno longer practice putting people on an ice floe whenthey can't fully take care of themselves, we as a society need to step up.Because if we don't, we may as well start looking for the nearest body ofwater.

The shameless self-promotion bit: To see/hear my interviews from last week connected to theHealth Council of Canada report, the segment with me (and my double chin) onGlobal News National is here (starts around 12:25).This Thursdays, I was on the John Biggs Show on CJBK Talk Radio. The podcast onthat interview is here. Also check out the podcast with Dr. Dennis Kendall - hetalked to John after my interview and made a lot of excellent points.

Guardian

2011-12-16T09:00:00.000-05:00

Everything - A Re-Post

2011-12-10T12:23:00.001-05:00

On Monday, in the Health Council of Canada video I talked about the consequences of not being able to get the medication you need because of cost. Yesterday, I posted my guest blog for the Help Council of Canada about the cost of chronic illness. Today, I'd like to shares something I posted back in the beginning of The Seated View. This piece is about what can happen before and after getting the medication you need and the importance of timely access to financial assistance:

In December of 2004, I looked into the abyss and the abyss looked back.

It’s hard to write about this – doing so with any emotional truth means going back to a place I’d rather never feel again – but there’s something I’ve wanted to say for a long time and it needs a bit of a back story.

Pain is an oddly isolating thing. It can’t be shared with other people, can’t be described in any way that comes close to communicating what it feels like. It isolates geographically and socially – it hurts too much to go out, spending time with friends takes too much energy and when touching hurts, displays of affection do also. When it gets loud enough, you lose your ability to think and focus.

Early on in 2004, when my arthritis was flaring, my rheumatologist and I decided it was time for the big guns. The biggest, in fact. Enbrel is new and expensive and costs about $23,000 a year, so I needed help from the Trillium Drug Program. When the government gives you tax payers’ money, they’re careful. So as my application slowly meandered its way through the bureaucracy, my life gradually went belly-up.

Things were getting steadily worse and in September, Vioxx – the only anti-inflammatory that I could tolerate and which kept things somewhat tamped down – was recalled. My arthritis flared stronger, blazing unchecked through my body, destroying my joints even further. Painkillers only masked the symptoms and only partly, without preventing the damage.

I’ve struggled with finding a way to describe my life at that time and I don’t have the words for it. There’s no way of talking about it that doesn’t sound like melodramatic hyperbole. I felt like my body was disintegrating, shutting down. It was every kind of pain I’ve ever had and all at once. Pain wrapped me in a sheath of flexible, frosted glass, muting the words of loved ones, a foggy barrier between the world and I, slowly closing in, narrowing my world until I felt shrink-wrapped by it. I felt as if I was a prisoner in my body, held in a far-away place, tortured around the clock, screaming, screaming, screaming, too far away for anyone to hear me and even if they did, they could do nothing to help me.

See? Hyperbole.

Christmas is my favourite holiday. Throughout my life, it has been magical, each year feeling like somehow, my family and I enter a parallel reality, one where love is palpable and radiant. Last December, I knew it could be my last Christmas, that my life, as it was, could very soon not be there anymore. I knew that if I didn’t start Enbrel very soon and if it didn’t work very quickly, my life was over. I knew that at in tops 6 months, I’d either be hopped up on morphine in a nursinghome or perhaps my body was indeed shutting down. I felt as if I had terminal arthritis.

I have never been so aware, so fully conscious of everything as I was on Christmas Eve. I opened up as far as I could and absorbed the laughter, the love, the joy in the room and put the memory in a special place in my soul, for comfort, for remembering, to be a safe place to go if I had to leave.

By New Year’s Eve, I felt erased, stripped, burned to a cinder. The pain had taken everything.

Shortly after New Year’s, I was approved for Trillium and on January 7, 2005 at 3:35pm, I received my first shot of Enbrel, went back home for a rest and at 6pm, I woke up a different person.

It’s as simple as that. And as complicated.

Enbrel worked quickly and changed everything. Within a few weeks, the pain levels had subsided drastically, the swelling went down and I became stronger and stronger. Every day, I realized a new thing that I could do and I would laugh and laugh with the joy of it.

Then it spread. As much of the pain left, there was enough room in my head that I could think again, remember things again. I was hungry, starving – for knowledge and for food. I could eat again, things I hadn’t been able to eat for ages. As time passed, my body developed an almost aggressive quest for health, wanting only real food, craving protein and rejecting sugar (I haven’t had a cookie in six months). Strangest of all, how I see things have changed. The world went from black-and-white to technicolour and everything seems a miracle of perfection. Once, when shopping, I was nearly brought to tears by a pepper, such a perfect blend of yellow and orange that it looked like late afternoon summer sunshine in a February pepper. I regularly get lost for hours looking at blade of grass or a feather or the sun glinting off water.

It’s overwhelming. I feel reborn, new, vulnerable, raw, open, intense. Everything’s so intense. I don't know how to be this aware of the beauty of the world and still be a well-functioning human being and so sometimes, I hide in the old me for a few weeks while I catch my breath, then jump back in and fly.

Last year aged me. I feel older, look older – my face is marked by lines that didn’t come from smiling. I feel fragile still. It scares me how long it is taking to get my body back to where I want it to be, it makes me realize that I didn’t just feel like I was very sick. I was very sick.

At times, I get besieged by abject terror at the thought of losing it all – I am not yet done with this gift. At times, I want only to hide from it – it’s too much, too strong, too deep a mystery. I feel as if I’ve been razed, burned to the ground, had nothing left but ashes and then… then someone gave me back my life and a second chance. I take my second life seriously. I see myself as under construction, body and soul, becoming the person I’ve always wanted to be. I work hard to become healthy on all levels, to change and grow every day, to be mindful of the glory of it all and to not resist change, but embrace it.

Mostly, I am madly in love with being alive, delirious with the ability to think and communicate ideas and truth be told, probably a bit unbearable. I feel drunk with it and as most drunks, I have a lot to say.

Every time I get a shot of Enbrel, I send out a silent thank-you to the taxpayers of Ontario.

I am your tax dollars at work.

Thank you for my life.

December, 2011 note: it has been seven years almost to the day since I got my life back and I am still living inside the miracle. I still receive funding financed by taxes to pay for the $40,000 Humira costs every year. Without it, I would be dead. All these years later, I am still grateful every week and sometimes every day. I would like to say again to all of you who pay taxes in this wonderful province of ours: thank you for my life.

The Cost of Chronic Illness

2011-12-10T12:14:00.001-05:00

This week, I'm one of the spokespeople for the Health Council of Canada in relation to the release of their latest report on how Canadians with chronic diseases rate their health care system. Today, my guest blog appears on their blog site. I wrote about the cost of chronic illness:

When we talk about the cost of living with a chronicillness, it usually refers to the impact on quality of life - the ability toparticipate in your family, community and work.

Living with a chronic illness is also expensive.

I am lucky there's a financial assistance program thatcovers the very expensive medication which has given me back so much of mylife. Because of this I can work part-time, give back to my community and bethere for my family.

Even so, other medical conditions pop up, as do side effectsfrom the drug that gave me back my life. More medications are needed, some onlycovered in generic form and others not at all. Sometimes, the generic don'twork as well as the brand name. I have two choices: endanger my health by nottaking the meds or pay for the brand name myself. Every month, they cost me $400I don't have.

Treating a chronic illness isn’t just about drugs. Physiotherapycan help maintain my level of function, but costs $80 for one treatment.Without it, I have high pain levels that can reduce life to just gettingthrough the day. With it, I go deeper into debt.

I have used a power wheelchair since I was a teenager. It ismy legs, my mobility and without it, I would be confined to bed. Because I donot receive social assistance, I pay for maintenance and repair myself. Thispast summer, it cost me $2000.

I am a lucky woman. I have good medical care and medication,treatment and equipment that give me the opportunity to live a wonderful life evenwith a severe chronic illness and disability. I am also caught in a viciouscircle of necessary expenses that I cannot afford. Without them, I risk myhealth and lose the ability to live my life. With them, I sink forever deeper intodebt.

In Which I Become a Spokesperson

2011-12-10T11:58:00.001-05:00

Today, the Health Council of Canada releases their latestreport called “How Do Sicker Canadians with Chronic Disease Rate the HealthCare System?” This is not the first report they have released - their mission isto "[t]o report on the renewal of Canada'shealth system, focusing on best practices and innovation." I love thiscountry.

Anyway, a couple weeks ago, I was contacted by someone Iknow at The Arthritis Society wanted to pass my name along to the HealthCouncil. The Council was looking for spokespeople to put a human face on thefacts of the report and before you knew it, I was at their offices in front ofa camera. Looking only slightly like a deer in the headlights...

Normally, I prefer being behind the camera, but this isimportant enough that I got over my stage fright and went for it. However, notbefore I turned the tables and took a picture of the other side of the room.Meet Cameraman Michael Strange, Media Specialist Terry Glecoff and SeniorPolicy Analyst Sukirtha Tharmalingam who was involved in preparing the report.

The report is based on results from the 2011 CommonwealthFund International Health Policy Survey of Sicker Adults and if you'reinterested in the details, you can download the report in PDF format here. It discussesa number of aspects related to the way people with chronic illness interactwith the healthcare system access to care, affordability, timeliness,coordination and patient engagement.

I often have opinions about the invisibility of people withchronic illness and disability, but today, thanks to this report, we are outthere, telling our stories. Six Canadians who live with chronic conditions arewriting guest blogs about their experiences for the Health Council this week -you can read them here.

And then there was that thing in front of camera. Three ofus met last Monday and one after the other, were interviewed by Terry. This isJordan Bruce, writer of In the Stroke of Time.

One of the things I learned from this experience is thatwriting is a completely different way of communicating been talking on camera.Sure, I've always known that before, but in theory. I like to publicly thankTerry for guiding me through it and for helping me re-start my brain when itgot stuck halfway through. Thankfully, he edited that part out (if there's evera DVD release, it'll no doubt be on the gag reel).

This is the video (also available on the Health Council ofCanada’s YouTube channel). It's awesome.

Four Leaves

2011-12-09T10:00:00.000-05:00

Anger and Shame

2011-12-07T10:33:00.001-05:00

As you've no doubt noticed, I've been pretty angry lately.It happens when I'm very tuned into political issues. And it happens a lot whenI'm tuned into political issues that relate to vulnerable populations (usuallydouble levels of injustice). Lately, I've been blogging a lot about disabilityissues and well… This is one of those issues where the political is verypersonal. I was starting to consider focusing on unicorns and rainbows, butthen Saturday happened and I got all energized again.

To the best of my knowledge, today is the day that TorontoCity Council will debate eliminating the Hardship Fund. Somewhat ironically,this happens mere days after the International Day of People with Disabilitiesand just one day before Human Rights Day. Because nothing says we support humanrights and services for people with disabilities like axing the fund that helpspeople with disabilities get the kind of equipment they need, but can't affordand which isn't covered elsewhere.

And I'm angry. Actually, I'm so mad I could spit. Part ofthis anger is fueled by the discussion I had with other attendees of the International Day of People with Disabilities – y’know, the one that wasn'trecognized in any serious way by our fair City. The day proclaimed by the UNand celebrated around the world. Except in Toronto.

And I was especially angry after I found out that anestimate of the cost of celebrating this day the way it's been in the past liesaround $10,000. I was also especially angry to find out that a lot of smallergrants to disability organizations have been cut - $5000 here, $10,000 there.Money that goes to programs for those in our society who don't have a lot ofpower or make it into the headlines. Money that begins to fill gaps inservices, protect rights and make the invisible visible. I was angry because tome, this confirmed a feeling I've been having for a while. The feeling thatthere is an unspoken effort from the current City administration to erode thoseservices and rights because we don't have a lot of power or make it into the headlines.And I'm not unaware that this kind of statement gets people thinking I'm a bitparanoid. Lately, I've been wondering if perhaps I was, if I’d gotten so farinto the politics of it that I had lost sight of reason.

We did make it into a headline in the Toronto Star onSaturday in an article that confirmed to me that I hadn’t. In this article, itis mentioned that our esteemed Mayor had attempted to shut down the City’saccessibility advisory committee, but backed off when it was pointed out to himthat having one such committee was requiredby law. This article also mentioned that Councillor Adam Vaughan, who ischair of this committee, had not been aware that the International Day had beencanceled. Vaughan is quoted assaying "[t]here’s been a drift, if not a concerted effort, to move awayfrom support of people in this city with disabilities.” I heard at thegathering on Saturday that other Councillors also were not aware that the Daywas canceled, but when their constituents told them, they went on the warpath.

So I'm back to being angry. Because to me, this bit by biterosion of grants, services and support for a particular population isdiscrimination. Deliberate? I'm not going to make any statements about that, butI don't think it matters. The end result is discriminatory. And this is thepoint where people start getting uncomfortable, because the D-word feels somehow wrong to many whenapplied to disability. Sometimes, there’s downright pooh-poohing, a dismissal that such a thing happens. Which I still find odd -very few people dispute the fact that discrimination happens against racialminorities or women, but it somehow inconceivable in the context of disability.What if grants to women's organizations or agencies for racial minorities weresystematically cut? What if Black History Month was canceled?

I would posit that this kind puzzled reaction to the issueof discrimination comes from the same place that expects people withdisabilities to be nice and quiet. On Saturday, Dave told the story of speakingto the City’s diversity department staff about the problems in not recognizingthe International Day of People with Disabilities. The good news is that thisstaff did step up, did take action and do the right thing and it's a very bigvictory. However, my point relates more to the way they seem to be surprisedthat he was angry. Because being angry is very definitely not part of the roleof disabled person. We are supposed to be nice, unassuming and ever gratefulfor the smallest crumb thrown our way and if you don't believe me, you shouldtry being on the receiving end of services for people with disabilities.

On Saturday, we networked. We shared information that madeit clear that misinformation had been the name of the game around theInternational Day. There were very different stories about statements made bythe City and what had really happened. And my reaction to this is to not sitback down (metaphorically) and be quiet while someone pats me on the head. Myreaction is to get angry and a lot more in the community aregetting angry, as well.

It's about time.

The Boy said something brilliant about anger: anger unitesand shame provokes change. We need to unite our community, each small grouplinking with the others until we become a force to be reckoned with and thateffort is fueled through anger. Creating change often takes an effort to shamethe institutions and administrations that try to silence us, to render usinvisible and to erode the rights we've fought so hard to establish. Think backon any successful movement to create social change and some aspects of thatprocess will include shame. I would like to believe that it's not necessary,that as reasonable people, we can talk about such things and come to areasonable conclusion. However, recent events prove that this is not the case.Because whether it is in our City or on a national basis, people withdisabilities are not a priority.

And we won't be until we make a lot more noise. Noise thatgets us into headlines. Noise that gets every reasonable able-bodied person outthere to sit up and take notice and join us. Together we will make changehappen.

So get angry. Meet you on the barricades. They'll be accessible.

International Day of People with Disabilities

2011-12-05T09:00:00.000-05:00

Saturday was the International Day of People with Disabilities. This is a day proclaimed by the UN and this year, the theme was "together for a better world for all:including persons with disabilities in development." this became particularly amusing (but not in a good way) when you consider everything that's happened in our fair city recently. The City cancelled its participation in marking this day and on Wednesday, Council will consider axing the Hardship Fund. All very inclusive, don't you think?

Anyway, the community partners decided to go ahead with a celebration of the International Day and announced that the gathering would be between 12:30-2PM. At the last minute, community pressure and the valiant efforts of Dave from Rolling Around in my Head brought the City back into the celebration. They wanted to move it indoors to the Member's Lounge in the Council Chamber, but the community members had concerns about the logistics of this - it was simply too late to change locations, so the lounge became the warm-up area.

Because it's Toronto. In December. Which is cold.

The gathering was by the Winston Churchill statue, next to a construction site. When we got there, we saw a woman with the most fabulous outfit - very celebratory!

We wandered towards City Hall (this is the picture that separates Stra Trek: The Next Generation fans from all the rest)

and found the Council Chamber. We felt this set-up with a recycling can on each Councillor's place said much. Not sure what, though.

The Lounge was accessible and I had a moment of pretending I was the Mayor. Not sure it'd make for great TV news, though.

This would, though

The celebrations is Variety Village are usually attended by 2-300 people, with dignitaries, sound system, ASL interpretation and attendants, food, tables and greenery. This year, because the City had pulled out, there were a small clump of disabled people sitting in the cold. Unfortunately, I didn't see any mainstream media there. Would've made a great story. I was wrong - the Toronto Star did a story about it.

Winston had opinions. Didn't share them, but his posture speaks loudly.

One really great thing did come out of this. A bunch of us congregated in the Member's Lounge and talked. Shared interesting information, philosophies and email addresses.Made connections and plotted just a smidge. I'm so very glad I went.

Caregiving for Dementia: How to Support with RA

2011-12-01T12:00:00.000-05:00

November was Alzheimer's Awareness Month, as well as National Caregivers Month in the US and HealthCentral marked it by doing a special project where writers from different sides wrote about dementia and Alzheimer's. Earlier this month, I wrote about dementia caregivers' increased risk of developing autoimmune diseases and this week, I take a more personal view of supporting people living with dementia and their caregivers even though your body doesn't allow you to do anything physical:

"For three years, we watched my father disappear, moving a little bit further away from us every day. He'd had a large stroke and managed to battle back from that, but then came another. And another and another, small TIAs and seizures happening often enough that the brain damage continued, giving him vascular dementia. It wreaked havoc on his mind and body and devastated our family."

You can read the rest of the post here.

The Tinks Turn 6

2011-11-30T10:00:00.000-05:00

Yes, they do. Today, in fact. I don't know how they went from this to who they are today, but I'm enhjoying every minute!

We had a wonderful party for them a couple of weeks ago. Herewith a few pics for the day.

I was in charge of distracting the wee monsters while everyone else were preparing the room. This naturally meant that they took turns riding on the back of my wheelchair while I chased the other one around the room(apparently with a maniacal expression on my face)

Photo by David

I had no idea that Morgan Monkey Girl rode this way until I saw the picture

Photo by David

When that started getting a little old, we gave them their present: two pairs of wings. And then I chased them around the room while they pretended to fly. Throughout the day, several adults also tried out the wings. Okay, so almost everybody tried the wings and wished that taking in adult sizes.

Liam was sure that his were owl's wings and spend a significant amount of time communicating in owl, saying "hoo" to everything.

There was cake and games and piggyback rides

feats of strength, impromptu shoulder massages and great conversation. An absolutely perfect day.

Happy 6th birthday, my lovies!

Photo by David

Disabled? Disposable. Help Save the Hardship Fund

2011-11-28T10:00:00.000-05:00

I had a plan for this week. I’ve had that plan for about ayear. Because the International Day of People with Disabilities is on December3 and for the last couple of years, that meant that I go to Variety Village to take part in the City'scelebration of this day. It's a terrific day that celebrates the achievementsof people with disabilities.There is space for artists with disabilities toexhibit their work, a lot of networking and awards recognizing the achievementsof people with disabilities. Due to an injury, I had to miss last year's fun,but was determined to go this year.

And then Rob Ford got elected. Which means this year, TheInternational Day for People with Disabilities will not be celebrated by the Cityof Toronto. Sure, there'll be aproclamation and the Access Award will be given out during the City’scelebration of Human Rights Day, held in the Council Chamber. Which I thoughtwasn’t accessible, but maybe they've changed that in the last year or so?

Anyway. Our esteemed Mayor got elected on promising tobalance the budget by savings made in. attrition and efficiencies - in effect,cutting the gravy that he claimed was so prolific at City Hall. He said there’dbe "no service cuts. Guaranteed." Except, it turns out there isn'tthat much gravy. And since the aforementioned esteemed Mayor canceled a numberof revenue generating programs and taxes instituted by our previous esteemedMayor, he’s having a bit of a problem finding the promised reductions in thebudget. Enter the service cuts.

To be fair, the celebration of The International Day forPeople with Disabilities was not included in the budget and therefore it wasnot the decision of our City Council to cancel it. Likely, it was a decisionmade by staff because they have to find a significant amount of money to reducetheir budget. And I guess this was an easy one - after all, it was for a verysmall group of people, one that traditionally doesn't have a lot of power ormakes a lot of headlines.

But I'm not bitter.

What does make me spitting mad and about to jump on thebarricades is the next trick in what I'm beginning to see as a war on thevulnerable. Because one of the service cuts that is being considered in thebudget on December 7 is to get rid of the Hardship Fund.

What is the hardship fund? It is $900,000 a year set asidefor the working poor, people with disabilities and seniors to access when theyneed medical equipment not covered elsewhere and which is too expensive toafford when you're living close to the bone. Things like hospital beds or liftsthat enable you to live in your own home instead of in an institution. It coststhe taxpayers of Toronto 60 cents each per year to take care of the mostvulnerable in our city, to help them stay in their homes and to help themthrough medical crises. And 23 of the elected on our City Council voted foraxing it. Charming, no?

Because, I suspect, the Fund serves a very small group ofpeople, one that doesn't have a lot of power or traditionally make it into alot of the headlines.

Our libraries did. When significant cuts to libraries wereon the table, the citizens of Torontorose up en masse to fight back. One of the citizens was Margaret Atwood, astaunch defender of Torontolibraries. It helped that Doug Ford, our esteemed Mayor's brother, also aCouncillor and a bit of a bull in a china shop, claimed that he wouldn't knowMargaret Atwood if he passed her on the street, that there were more libraries thandonut shops in his riding (quickly and easily disproved) and that nobody wouldcare if they closed (boy, did people care). And best of all, because peoplecared and told their City Councillor in personal letters and emails, plus over40,000 signatures to a petition, all of a sudden Councillors cared, too. Becausethey cared to be re-elected and wouldn't be if they voted to close thelibraries.

Toronto'scitizens with disabilities don't have a Margaret Atwood. I wish we did. I wishwe had a beloved and iconic public figure who would join the fight and whocould be as effective as Atwood was in bringing attention in the media to this.Instead, we have Social Planning Toronto joined by a lot of individuals in thissmaller group and their friends who are fighting to protect the Hardship Fund. AndI worry that there won't be enough of us to provide the kind of pressure ourCouncillors need to do the right thing. To remember that we are all citizens,not just taxpayers. And citizens take care of each other.

Any one of us could need the Hardship Fund tomorrow. One in two people are touched by disability, either individually or because a familymember has a disability or medical condition. Disability is the only minoritygroup you can join at any minute with no warning. We all have aging parents whowe'd like to keep at home as long as possible. Regardless of who you are, yourability or age, you have a vested interest in protecting this Fund.

There is a week left until the meeting where Council willdecide whether to cut the Fund. Is it enough time to get 40,000 signatureson the petition to save the Hardship Fund? We'll never know unless we try. And while you're at it, pleaseshare it everywhere you can, e-mail, Facebook, Twitter. If you don't live in Torontobut know somebody who does, send it to them. Please also consider writing yourCouncillor a personal note to let them know you support protecting the HardshipFund (Council contact info here). CC the Mayor. Sign up for Social PlanningToronto’s email list. Make some noise. We need everyone, disabled andable-bodied, to join the fight.

Let's make some headlines!

Pie

2011-11-25T14:54:00.001-05:00

The Knife's Edge

2011-11-23T10:00:00.000-05:00

Monday morning, I woke up with a pain in my right big toe.Well, not exactly in the toe itself, but just below the bottom joint. I wiggledit, inspected it closely and then went about my day.

It continued to hurt, just at that spot below the bottomjoint and it made me nervous. In 2004 when I ran out of my hoarded store of Vioxxand the RA came roaring back, it did so in the bottom joint of the big toe onmy left foot. It started hurting and swelling just below that joint and within24 hours there was an almost audible pop when the fluid filled the joint somuch that it felt as if it was forcing apart the bones.

Granted, what happened Monday morning wasn't in what I'vecome to consider my canary-in-the-mine joint, the one that started the last,big flare. And it wasn't in the one that’s taken over, tendon problems havingbecome the new sign that I’m low on Humira. So I checked other joints, wentthough a couple of moves and tricks that usually mean I’m doing well and passedall of them with flying colors. But the foot kept hurting, kept throbbing, kept beinginsistently there in a way I haven’tfelt in years.

I didn’t tell anyone all day, because saying it out loudwould make it real. In the late afternoon, I had my Mandatory Rest Period, butdidn't rest much because of the pain in that toe. I looked at my foot after getting up from mynap, noticed what I thought was a bit of swelling and then didn't look again,just being aware of how much I could feel my sandal around that area. Went to ameeting and was aware of my foot, came home, watched the rest of the Dancingwith the Stars finale and was aware of my foot.

And then I told my mother and after some discussion, weagreed it was a fibro flare. And then I told The Boy and finally looked at myright foot, feeling safer having him there with me on the phone. And it hadswelled some more, but sort of oddly, sort of on top of the foot. So Itheorized a light sprain, but underneath all the logic was the panic screaming the Humira has stopped working and it’ll keep swelling and when I wake uptomorrow, I’ll be in a full flare and an incoherent constant moan of please no, please no, please no. Andthen I ended the call because I couldn’t focus on anything but the gibberingfear and tried to distract myself with season one of The Big Bang Theory, notreally succeeding.

My attendant came around 10 PM and I transferred to the toilet, not feeling pain and you would be in pain if you bore weight on the foot,wouldn’t you, if it were the joint? I sat there, absorbed in the sensation of abuzzing throb in time with my heartbeat, looking at my feet, trying to see ifthe swelling was getting worse. Afterwards, I changed the way I sat, put myleft heel on top of the right foot and it hurt and all of a sudden, I thought Iknew what had happened. That maybe I’d sat like that for 2 hours during the parade and that maybe the cold and the position and being tense because of howmad I was at the idiots who cared nothing for other people’s views had strainedmy foot right there. That maybe it actually was a slight sprain. The achepulling up my leg in a line from the toe by the ankle and towards my knee certainlyfelt like a sprain I’d once had.

That was the logic, but the pain was pretty bad and thethrobbing was pretty bad and my foot positively cried out for an ice pack(impossible because there wasn't anyone there to hold it against the foot) and Ifreaked out some more and then, around midnight, it eased. Eased enough that Icould ignore what was going on. Eased enough that the panic subsided.

When I woke up yesterday morning, there was no pain, not untilI'd gotten up and moved around and that was a good sign. I saw my familydoctor and after some discussion, we theorized a slight sprain. I am, however,watching it like a hawk and if it hasn't improved by early next week, I'm callingmy rheumatologist. And in the meantime, I'm sitting on the panic.

All it takes is a moment. A moment of odd pain, a moment ofthe inexplicable - and not the usual inexplicable that comes withfibromyalgia - and you realize that your life is a house of cards. I may havetalked about getting used to the meds working, that I've shifted from expectingit all to end any minute to believing that it won't and that I feel much morehopeful for the future, having faith that if one medication stops working, there are others. And then there's that moment where you think your medication actuallyhas stopped working and it is nothing but blind fear. A screaming howl ofpanic that it is all over again, that it will be derailed again, that all thiswonderful treasure of a life that you have found again will be lost. And what ifnone of the other meds work and what about the side effects and in a splitsecond, the grief of losing your life is dropped on you like a freight trainand it becomes impossible to breathe.

Having a chronic illness is like walking a knife's edge. Thefirm ground beneath you isn't firm and isn't ground at all. It isinfinitesimally thin and you walk along it in a precarious balance. All ittakes is a puff of air and you will be cut to pieces.

I'm thrilled to be nominated in the Best Blog Post category of the 2011 Canadian Blog Awards for Sensitive to the D-Word. You can see all the first-round nominees in that category and vote here and all categories here. There are some excellent blogs on the list. You don't have to be in Canada to vote.

A Complicated Santa

2011-11-21T12:47:00.001-05:00

Yesterday, Santa came to town and you all know how I love the annual Santa Claus Parade. This year, though... There's a rant coming and I'm not just trying to work one in every time I post, but... OK, let's have some fun first. And a lot of it was as delightful as it's ever been.

Canada Post collected letters for Santa (I can't begin to say how charming this is)

The Toronto Police contributed an old form of transportation for police officers

And a so-old-it's-new-again form of transportation

There were bands

and Bugs

More horses

the Muppets

Very deliberately not making comments about cops and donuts here

Cheerleaders

And the U of T Engineering band

The Royal Canadian Horsie Police

And now for the parts that complicated matters. I have attended every Santa Claus Parade for the last 16 years and have always had a spectacular time. Everyone were there to have a good time, to have a chat with neighbors, to get swept up in the childlike joy of the day and everyone always had a sense of making room for each other. It was a communal experience. In the last couple of years, it has become more like competitive Santa watching, with people jostling as close to the action as they can, with no awareness or concern for the people there blocking. People such as myself or, more importantly, children. It seems to be about getting your kid to the front and hang the consequences. Yesterday, a man and his family came late.to the proceedings. He had a contraption on his shoulders for his child to sit in and was therefore taller than everyone around. Yet, he parked himself in the front. And when someone who had been there since well before the parade started with two children who now could see nothing, pointed out to him that he was blocking everyone's view, he actually said "I'm sorry, I didn't realize." Seriously?

for much of the parade, this was my view

again, seriously? This woman with her stroller - because her child is too young to know what's going on - came after the parade had already started and placed herself in front of me and several children. She seemed slightly offended when we pointed this out. Which we had to do over and over again to more people (all adults) than I could count and it just got more and more upsetting. We got the police officer who was doing crowd control in this area in on the game and I cannot tell you how many times he told people to not block the view for the kids. I have always loved that so many adults come to this parade, even when they don't have kids, but in the past couple of years, they seem to have forgotten that they are taller than children and not care who they block, as long as they get to see everything.

And it made me mad as a hatter. At one point, The Boy asked if I was cold and I told him that the rage was keeping me warm. Later, I commented on how this turned into the Bipolar Parade, because I alternated between wanting to throttle people and going "ooh, look at the penguins/Muppets/band!"

And then the screaming started. This is how you know that Santa is on his way - his arrival his heralded by thousands of kids (and adults) screaming as loud as they can. He's bigger than the Beatles. So we all rush up as close as we can, waiting to wave to Santa and for him to wave to us and say "ho, ho, ho." And here are the reindeer and here's Santa and everyone's waving and yelling and so excited (yes, the adults, too) and....

Nothing. Not one "ho, ho, ho," not one wave. Because Santa is busy taking pictures.

Okay, I guess he's allowed, but surely, he'll put down the camera and say something in a second.

Nope. Nothing.

I'm not quite sure how you'd explain that to a child.

Update: I tweeted this post to the Santa Claus Parade organizers and they responded right away saying "Hi Lene, 1st, we'll take away the camera from Santa. 2nd, we'll post etiquette to make sure kids get the view they deserve." Couldn't have asked for a better response!

A Question for the DIP Deniers

2011-11-18T10:30:00.000-05:00

I'm not RA for a long time and I've now worked in a job thatexposes me to a lot of news about RA for several years and yet, I still learnnew things every day. For instance, the DIP debate.

The DIP is short for the distal interphalangeal joint. Whichis the joint on your finger just before the nail.

(And I can't say anything that has the word phalanges in itwithout thinking "dancing phalanges!")

Anyway, back to the point of the day. For as long as Iremember, I've known that swan neck deformities are classic signs of RA. Ideveloped them very early on and most of the people I've met who had RA in theirhands and fingers that had not been well controlled also had them. It's similarto secret handshake for people who can't shake hands - a quick glance will tellyou whether the other person is "in the club."

And what is this swan neck deformity? The American College of Rheumatology (ACR)has a picture and drawing in their image bank describing that it "maydevelop as a result of synovitis" (i.e., inflammation of the synovium, thethin layer of tissue that lines the joint and which becomes inflamed and RA). Thejoints involved include metacarpophalangel distal interphalangeal and proximalinterphalangeal joints.

Right. Too many polysyllabic words. Basically, it looks like this(pardon Lucy being indelicate with her toilette in the background):

Unmistakable, right? It's pretty clear to me that this can'thappen without some sort of RA involvement of the DIP joint.

Except a couple weeks ago, I discovered that there appearsto be some sort of debate about this and I made a mental note to do some research. And forgot, because it was a bad fibro day and my brain wasn't working. Then last week, Kelly over at RA Warriorposted about it, nudging my thinking even more. Because guess what? All kindsof people are saying that there is absolutely no DIP involvement in RA. EvenJohns Hopkins says so. John's freaking Hopkins!They say that "rheumatoid arthritis does not affect the distalinterphalangeal joints."

Maybe I don't have RA after all... Does that mean I'm cured?

Social Autoimmune Caregiving Media

2011-11-17T10:39:00.001-05:00

It's hard to sum up these two very different posts I wrote for HealthCentral this week, hence the mangled title.

One was about how the RA community connects using social media:

"RA affects one percent of the population. Without actively searching, you'd be lucky to run into another person who lives with the same chronic illness you do. Yet, finding someone who knows exactly what you're going through is on the top of all our wish lists. When I was growing up, the only place I met other kids with JRA was in hospitals and doctors' offices. Even now, I've only met a handful of people who have RA in the part of my life that takes place face-to-face.

Enter the Internet. It has had a revolutionary impact on our ability to connect, person to person and community to community, creating a larger tapestry of people living with RA and other autoimmune diseases."

The rest of that post is here.

November is Alzheimer's Awareness Month and several of the HealthCentral writers were asked to write about various issues related to Alzheimer's. My contribution was an exploration of the link between caregiving for someone with dementia and a higher risk of developing an autoimmune disease:

"Taking care of someone who has dementia is hard (this might be the understatement of the decade). This type of caregiving causes chronic stress so intense that it has a direct effect on your body's ability to support you. Alzheimer caregivers have a higher risk of depression and heart disease, have a harder time fighting infection, their wound healing is delayed and vaccinations don't work as well as in others. These last three aspects indicate an impaired immune response. What happens within your body when you are under this kind of chronic stress? And what is the connection to autoimmune diseases?"

It was a really interesting post to write and I learned a lot. You can read the rest of that post here.

2012 Calendar & Holiday Stuff

2011-11-15T10:30:00.000-05:00

I forgot again. Forgot how long it takes to make the calendar, the cards and all the rest. But being a bit stubborn (!) , I persevered and here it all is. A little late, but here.

There's a calendar

and holidays cards, some of which have a greeting inside (a request from a customer last year)

There are new magnets, a really cute festive button, a pirate ship on a mousepad and new prints that may be perfect for gift ideas. Taken a gander at the shop to see for yourself.

Happy that time of year again!

99% Accessible

2011-11-14T10:30:00.000-05:00

I've written before about how fascinated I am by the Occupymovements in general and Occupy Toronto in particular and I'm about to go onabout it again. But this time, it's about a particular aspect of OccupyToronto.

A few weeks ago, I was wandering around the parkchecking things out when I saw this

An accessible porta potty. I stood (metaphorically) in frontof it for a little while, not because it reminded me of the state of my bladder, but because I was agog at what was happening. And then I wanderedfurther and saw this

And if they hadn't had my support before, as of that day, Iwas firmly in their camp. Well, not literally - accessible porta pottynotwithstanding, camping is still not feasible for me.

A few days ago, I ran into one of the protesters, a womannamed Emily who uses a scooter (she has a blog, but alas, I don't know where itis - Emily, if you read this, please send me the link). We chatted about themovement in general and it wasn't long before she told me that she was onOccupy Toronto's accessibility team. Yes, they have an accessibility team. Iwasn't completely surprised because they had already proven to me that theywere serious about including the disabled part of the 99%. Emily and I talkedabout accessibility, about our esteemed Mayor and his team not beingexcessively disability friendly either now or in their past (before Rob Fordbecame mayor, he demonstrated his sensitivity to this group). She told me that whenevershe approached one of the many media teams that prowl the camp every day, hoping to discuss the accessibility aspect of the movement with them, they would turn off thecameras. And then she took me on a tour of one of their yurts, donated by OPSEU.I never knew that being inside a yurt was on my Life List, but it turns out itwas. And the reason I could get inside was because they had built a ramp.

Since that day, I've been thinking. Thinking about what issays about our society that one of the best examples of an integrative effortsis a bunch of people living in tents. People who have their own struggles, whoprobably don't have much money, but who are determined to ensure equalparticipation by all. And then I thought about how the majority of corporationsdon't care about people with disabilities until a law says they must. Aboutpoliticians who drag their heels passing laws that protect and enable peoplewith disabilities. About Toronto'shardship fund that helps seniors and people with disabilities get the kind ofequipment they need and can't afford and which is now on the chopping block in the upcoming budget. Because our esteemed Mayor is determined to cut everythingthat makes our city great.

And speaking of Mayor Ford. Late last week in a scrum, hementioned how it was time that the protesters move on. That he was representingthe wishes of taxpayers, went on about how his office had been getting callsand when Rob Ford says that he’s been getting calls from taxpayers, it’s usually is a signthat he's about to do something rash and drastic. So I called his office totell him that I was a taxpayer, too and I thought Occupy Toronto should be allowedto stay in the park. To which the minion I spoke to said that the mayor had nosay in the matter, that it was completely up to the police. This despite Fordrepeatedly saying he was "developing a plan" to deal with the issue.

Which brings me back to why I find this movement sofascinating. Because of how uncomfortable it makes a certain segment ofsociety. It is as if by exercising the right to freedom of assembly - a rightenshrined in various constitutions - and sticking around, they offer achallenge to a very deep belief about what one is supposed to do. So manypeople (politicians included) have said "they've made their point, nowit's time to move on" and that statement in and of itself is proof thatthese people don't understand the point at all. But they want them to go away,to stop questioning the status quo, to stop challenging the power structure.They want them to go away so badly that they will jump on the slightest reasonto move in and forcibly erase this challenge. There is much talk about drug andalcohol use in the camps and I suspect it is what will be used as an excuse toclear the park (even though the Anglican Church, co-owner of the park, supports the campers). Instead of fanning the flames, I wish clearer heads would prevailand realize that if you have a few incidents related to drugs and alcohol outof a camp of 500 people, then maybe the problem isn't all that different fromthe rest of society.

Here in Toronto,the movement is very clear that they are camping on church grounds and thatthis needs to be respected

According to a few I've spoken to, they do their best todeal with it, but they are facing some challenges. This park has alwaysbeen a haven for the homeless and I could imagine that having a campthat provides regular meals is a bit of a draw for the disenfranchised andneedy. I've heard that recently, there was an overdose in the camp, but someonefound the person and they didn't die. I wonder if they hadn't taken the drugs there,would they have overdosed and died in an alley, a rooming house or alone inanother park? But those overdoses don't make the headlines, do they?

Maybe we should all - and that includes our City Council -take the time to listen to the message instead of being so anxious to make itall go away.

And in the meantime, I'm going to go see the yurt one moretime. Because I can. There’s a ramp.

Remembrance Day, 2011

2011-11-11T11:11:00.000-05:00

In Which I Re-Learn the Basics of Living with RA

2011-11-10T12:30:00.000-05:00

In my latest MyRACentral post, I give the internet an opportunity to laugh at me:

"I consider myself a fairly smart person. It's not something we're supposed to say, just as we are not supposed to remark on our own gorgeousness, but there it is. I'm certainly not in the same league of attractiveness as supermodels or Hollywood stars, but feel fairly confident in saying that my brain works pretty well most of the time.

And then there are the moments of sheer unadulterated and profound stupidity."

You can read the rest here.

Figments of the Imagination

2011-11-09T11:27:00.000-05:00

Jenni over at ChronicBabe had a plan for her month-long sabbatical: ask for guest posters. My contribution appears today and is cross-posted here. Thanks for including me, Jenni!

"I'm so relieved I'm not crazy!"

Someone I know has just - finally - received a diagnosis ofrheumatoid arthritis. When she told me what happened in the appointment, shementioned her relief that she hadn't lost her mind or made it all up. Thisdespite having spent months experiencing obvious physical symptoms thatsomething was Very Wrong indeed. I'm pretty sure most of you are nodding inrecognition, having been in that place of thinking you'd lost your mind.

That's when I started wondering why it is that we doubtourselves so much. And I think I’ve found a few reasons,

Denial Ain't Just aRiver in Egypt

This is a no-brainer. Nobody wants to be sick. No one wantsthese mysterious symptoms to be an indication that there is something going on,something that likely can't be fixed by an aspirin and a Band-Aid. The onlyexplanation is that it ain't happening, not truly. So you take a trip intodenial, complete with a London Bobby standing next to you at all times,officiously exclaiming “move along, nothing to see here!”

At some point after you’ve received a diagnosis, denialleaves the building and is quickly followed by the other four stages of grief:anger, depression, bargaining and acceptance. Acceptance is easier when accompaniedby chocolate. A lot of chocolate.

My Body Has BeenTaken Over by an Alien

When you wake up in the morning and don't feel likeyourself, what are you supposed to think? Where once you awoke feeling rested,now you feel as if you haven't slept in weeks. Where once you had energy, nowyou feel as if you're moving in treacle and then there's the pain keeping up asteady stream of complaining like your own personal (and portable) Greekchorus. Clearly the only logical reason is that you have been hijacked by analien, here to do an advance reconnoiter before the mothership arrives.

We get used to our bodies feeling a certain way. When theydon't and there's no logical explanation such as the flu or food poisoning, youstart questioning reality. Are you really feeling what you're feeling? Is it analien or have you lost your mind?

Dr. Know-It-AllDoesn’t Know It All

We don't just have to fight our own jumps into outlandishexplanations for the strange symptoms. Often, we are helped right along bydoctors who are incapable of saying those magic three little words "Idon't know." Instead, they claim you're perfectly healthy and thosesymptoms? Well, maybe if you found a way to deal with stress, try yoga orperhaps a spot of counseling would help. Because y’know… the medical literatureis full of people who have cured chronic illnesses like rheumatoid arthritis,MS and lupus with the powers of their mind. Sadly, women are still more likelyto get this type of advice, so it's pretty obvious that although we may havecome a long way, the medical profession hasn't.

At the end of the day, trust your instincts. If you guttells you that there's something wrong, believe it. Don't ignore your symptoms,but do ignore doctors who pat you on the head and tell you there's nothingwrong. Find another doctor and another one after that, if necessary. It is yourbody and you understand better than anyone the messages it sends out. Don't letanyone tell you that it's all in your head.

Pink Umbrellas

2011-11-07T10:00:00.000-05:00

Inside the Miracle

2011-11-04T10:30:00.000-04:00

Last weekend, a user on MyRACentral named Laurie posted about the change in her life brought about by Humira. Less than a year ago, twoseparate doctors told her that she'd never be strong enough to do the physicalthings she loved, would never kayak or hike again. So she sold her kayak and Ican only imagine the grief that followed. Actually, I can imagine the grief, because I've been there, too. A differentexpression of losing what was an essential part of you, but I suspect the same feeling.It's a devastating sadness, this necessity of redefining who you are, of givingup something so much part of you that you may as well amputate a limb. Thephantom pain echoes as you move forward, becomes scar tissue, areminder of what you no longer have.

But this is not about sadness, this is about joy. Because inthat post, Laurie tells of confounding the soothsaying of the doctors and afterfive months on Humira getting back into a kayak. And every time I hear a storysuch as Laurie's, the miracle of the meds that are now available hits me again.It is never far away, this awareness of how revolutionary the change intreatment has become - we are at a place I thought I’d never see in my lifetimeand every year, more changes happen. More drugs, more tests, more changes tothe approach to treatment and because of it, the goal is now remission. Actualremission. It boggles the mind.

And when I hear a story such as Laurie's, it reminds me ofthe change in my own life. Because as I said in my comment on her post, afterseven years on Biologics, I am still getting stronger. Enbrel took me the firstbit of the way, gave me back my life. And then Humira jumped in and created itsown miracle, changing my life every year, sometimes every month. Because I amstill getting stronger, am still regaining parts of my life I thought I'd lost forever.

Because of Humira, I am allowed to take care instead ofbeing cared for. Because of Humira, my belief that I would never have thestrength and energy for everything that is part of a romantic relationshipagain was proven wrong. Because of Humira I have a job and an almost-finishedmanuscript with my name on it. It is as big as that and it is as small as theability to buy my own groceries, to go down to Sugar Beach, to play Angry Birds and tocomplain about being too busy.

And it is more than that, more than this embarrassment ofriches that has become my life. It is a gift that has changed how I view lifeand how I fit within it. This gift has made me a deeply happy person evenduring the times where I am bashing my head up against limits. It has given methe gift of believing - really, truly believing - that it all will not be takenaway tomorrow.

And there is more, something that is difficult to wrap myhead around. Because Humira has given me back possibility. In helping me getstronger and helping me regain what I thought I had lost, my expectations aboutwhere my limits are, where the line is between what I can and cannot do keepschanging. Keeps growing, keeps moving further than I ever thought possibleagain, keeps proving me wrong in my assumptions about what is possible. And itmeans that now, when I speak of things I cannot do, there is a small voiceinside my head that says for now.That says you never know.

I live within a miracle every day. And it comes with a joyand awe so profound there are no words to describe it.

Sorry for the Inconvenience

2011-11-01T10:30:00.000-04:00

I was on a small excursion, among other things returningbooks to the library and while I was there, I picked up another one. Aftergetting checked out, I moved over about a meter and a bit to get out of the wayso the person behind me could get to the counter and talk to the librarian.This meant that I was sitting in front of the door, not quite all the waythere, but close enough that there was about the width of a person between meand the automatic door button. I was wrangling a number of things on my lap,trying to put my library card back in my purse and after that put the book in abag, both of which were also on my lap.

Suddenly, a woman swoops in and presses the button for theautomatic door.

"There you go!" she cheerily, clearly pleased withherself for helping out.

"Thanks!" I look up and smile. "I'm not quiteready yet," and I bend my head down to look at the pile in my lap, stilltrying to get my library card into its slot.

"Oh jeez, do I have to hold open the door now?"she says, the cheer tinged with that clipped tone that means the speaker isirritated.

"No thanks," I say, "I'm not quite readyyet." I'm still smiling although the on the inside, my eyes are startingto roll.

"I'll go hold the door," she sights and stridespast me, through the inner door and outside, holding the other door open. Thedoor that is standing open due to the automatic door opener still beingactivated. She looks expectantly at me, her smile now rather brittle.

"I'm not quite ready yet, but thank you!" I say,still ~~baring my teeth~~ smiling and wondering if perhaps I'm not actuallyspeaking out loud. When it becomes clear I’m not going to leave on herschedule, she gives up and comes back in, joining the line-up for the librarian.She very decidedly does not look in my direction.. I close my purse and put thebook in the bag.

And then I push the button for the automatic door openerwith my foot and leave before she gets it into her head to help me again.

Happy Halloween!

2011-10-31T10:00:00.000-04:00

Thoughts on Cold and Stubbornness

2011-10-28T10:30:00.000-04:00

It all started when The Boy said something last weekend thatchallenged me to not wear socks until November.

Well, to be honest, I'm not quite sure what he said, but it's possibleit wasn't a direct challenge. All right, so whatever he said triggered thechallenge gland in my brain which then came up with the idea of not wearingsocks until November.

What? Don't you have a challenge gland in your brain?

Every fall, I go through some sort of demented competitionwith no one in particular and the entire world about how long I can go withoutturning on my heat. It’s a relatively benign way of letting my stubbornness and competitive instinctcome out to play and generally less damaging than trying to beat my own recordin Minesweeper or creating new ones in Angry Birds. Anyway, I usually win thisgame of heat because I live in an apartment building and the people who live in theapartments around me are wusses. They warm up their units, which means I havea layer of warm apartments around me and therefore don't have to touch the heatuntil it's -40 C with the wind chill.

Yesterday, I had to go to the UPSstore to pick something up and it was a tad chilly out there. In fact, had theweather been just slightly more humid, that might've been snow. Weirdly enough,my feet were not as cold as my hands, but both extremities were stilldefinitely registering the cold. On the way, I passed by the campsite of OccupyToronto, a clutch of about 200 tents in St. James Park. Then I started thinkingof how it is only Canadians who will persevere and continue to camp outside when it isfreezing and raining as hard as it is has been in the past week. It is a marknot only of their dedication to the cause, but also their innate Canadian-nessthat they're staying put. I mean, instead of doing this in August or September,they are camping out in political protest at the end of October. In Canada.Thus proving that stubbornness and slight derangement is a national trait.

And it was when I passed by the tents and was sure I couldsee them huddling together for warmth, canvas cheek by canvas cheek, that it struck me. Since I can’t jointhem what with this degree of roughing it not being terribly wheelchair-friendly, Ican support them in other ways. Show solidarity. Experience a tiny bit of theirdiscomfort.

So, yes. What I might be saying is that I have in a ratherastonishing leap of ridiculousness dedicated my not wearing socks to the cause.My toes are cold to support Occupy Toronto.

It seems slightly less nuts than doing it on a non-existentdare.

Remission: An Interview with Dr. Yusuf Yazici

2011-10-27T10:30:00.000-04:00

I had an opportunity to interview a doctor from the Langone Medical Centre and ask endless questions about remission:

"Remission. We all strive towards it, dream of it, wonder why we aren't there yet. When you have RA, the word remission is everywhere, but what exactly is it? How is it defined, how do you get there and what if you haven't yet seen any signs of it? To get more answers, I spoke to Dr. Yusuf Yazici, assistant professor rheumatology and head of Clinical Outcomes Research Unit at the NYU Langone Medical Center. Much of the discussion was framed by your questions."

You can read the interview here.

Limited

2011-10-25T10:30:00.000-04:00

Limits are everywhere I go these days. It seems as if almostevery post I read and every question I answer on MyRACentral has an element ofsomeone beating their head against the wall of limits. Of no longer being ableto work, no longer being able to kick a ball around with their kids, of havingtrouble cleaning the tub and the feelings that come with this loss of normal. Andoutside of work, they are there, too. Someone I know struggles with findingworth and self-esteem in a life that is shrinking around them, questioning whothey are now that they can do less. And yet another flails in frustration,alternating between anger and sadness, frequently reduced to tears and all ofit because of limits.

And it is there within myself, as well. I'm getting closerto the release of The Book and reading writers’ blogs about what happens after yourwork is published, how to promote and get it passing before eyeballs ofpotential readers. And there are terrific recommendations about blogging, usingsocial media like Twitter and Facebook, about responding thoughtfully tocomments, replying to e-mails from readers, creating a network with otherauthors and leaving thoughtful comments on their blog posts and don't forgetwriting the next book and as quickly as possible. And I look at it all and amexhausted at the thought because I am at my limits now, usually whizzing pastthem in a whirl of activity and adrenaline that keeps me burning through mystore of energy for the day and well into next week before I notice thatperhaps I should stop and have a rest or that ache in my shoulder will becomean injury. And I wonder how someone with a disability, high levels of chronicpain and significantly lower energy than your average person can ever makethemselves a success. I am within spitting distance of having a book with myname on it and I wonder if it will do what I hope, which is get out there andbe of use to people and in so doing, also be a bit of use to me, helping to paythe bills. Or will it all stutter to a stop and turn to nothing? Will it evenbe possible to make a living as an author with a disability?

When I try to help others, I speak of managing yourexpectations. Mention that planning to dance the Argentine tango when you arehaving trouble walking is perhaps setting yourself up for failure. I speak ofpatience, of putting one foot in front of the other - literally ormetaphorically - and persevering, keep moving, keep going and you will getthere eventually. And perhaps it won’t be dancing a perfect tango, but it mightbe moving to music in your own way and that is good, too. I suggest that lifehas a way of working out, that if something isn't happening now, it will whenyou're ready. That in the process of becoming ready, in the journey towardsthat goal, you sometimes find what you didn't know you were looking for andwhen you think about it all, you come to believe that everything happened atthe exact right time.

I do believe all of this, know that life hardly ever takes astraight path to get to where you think you wanted to go. I know that thecircuitous road can help you redefine your goal, can make you realize youwanted to zig instead of zag. That wherever you end up will be because youshowed up and worked hard and lo and behold, it will probably be just the thingfor you. And I know the key is to dream, but not get too specific in terms ofdates and times because that way lies setting yourself up for failure yetagain.

I know it is about looking at what you have, not what youdon't have. That the way to being happy and finding joy, even when you're notquite – or anywhere near - where you thought you were going to be is to payattention and see what you have, truly see and appreciate it.

But every now and again, when the limits are so very close,it's hard to see the forest for the tree you just rammed into.

Occupy Toronto

2011-10-21T12:23:00.002-04:00

The Occupy movement has come to Toronto and have settled down in St. James Park, not too far from my nec of the woods. I went by earlier this week to check out this new village

I liked the sign at the entrance. Which was surrounded by media vehicles to such a point it was difficult getting into the park

this was my first view of the tents and I hadn't expected there'd be so many

It was well-planned, there was even a medic tent

Headquarters

Creative people were making signs and let people know they could take whatever spoke to them

I like the sentiment

I get it. I really do. Sure, you can give in to cynicism and sneer at the hippie commune, making decisions by consensus, fighting capitalism and working towards an impossible utopia, but... the banks are making billions in profits and only give their customers 1% interest rate on their deposits, yet another luxury hotel is being built with suitess above it costing in the millions, 40-story condos are springing up everywhere you look - three are currently being built in my neighbourhood, with another one proposed and prices start at about $300K for what can best be described as a large walk-in closet. And sure, some affordable housing is being built, but not at the same rate and as far as I can tell, the gap between those who have money and those who don't have a lot of is widening and the so-called middle class is getting smaller and smaller.

So why not go out there and remind ourselves and each other that life is about more than money. That we are supposed to take care of each other. And that maybe if we did, the world would be a better place. Maybe this is not so much about fighting capitalism, but about fighting cynicism. And that can only be a good thing.

Chronic Illness, Disability and Abuse: Staying Safe

2011-10-20T09:39:00.004-04:00

MyRACentral and several other HealthCentral communities are marking Domestic Violence Awareness Month with posts about the issue and how it relates to chronic illness and disability. This is my contribution: Other posts and resources are on our Domestic Violence Awareness Month page.

""Ow."

"Ease up a little, please."

"Not so hard."

Almost every time this attendant was scheduled, she'd used too much force when assisting me in the shower, dressing or other personal tasks. Almost every time, I'd have to ask her to be more gentle. I told management about it, but not in a formal complaint - I was afraid of reprisals from her or her coworkers. Then one day, as she was washing my hair, she pressed harder and harder and harder on the back of my neck, causing a severe injury. Finally, management made it safe for me to complain. They asked me if I'd told her to stop that day in my shower and I hadn''t. I had been incapable of speech, in shock that someone would deliberately hurt me, just breathing through the assault, waiting for it to stop. And it finally did. I never saw that particular attendant again. But every day, chronic whiplash-like symptoms serve as a reminder of what she did to me."

The rest of the post is here.

A Wonderful Evening. Or Not.

2011-10-18T11:39:00.001-04:00

I've had the most delicious opportunity. I subscribe to amagazine called Canadian Living. Terrific magazine with helpful articles andreally wonderful recipes and a few weeks ago, I discovered another good thingabout it. Because that's when I got an e-mail with a special offer forsubscribers that was out of this world. An evening with Jann Arden. Who Iadore. And who gives terrific interviews – John/TinkPapa has interviewed her onhis show and she’s just wonderful.

The even will be held in an intimate old church which iswalking distance from where I live and sounds like it’s essentially a high-end pajamaparty. There'll be a chat between the magazine’s Life editor and Jann, there'llbe tea and snacks (which I probably wouldn't eat because of the nut allergy),hand massages (which sounds lovely for RA hands, but I probably wouldn't dothat either if the lotion was scented. The asthma, y’know. And yes, I’m aware I’ma wreck) and Jann will sing songs from her new CD. And then those attending willget sent home with a care package of chocolates, a signed copy of her new bookand the new CD. Perfect girlfriend evening, right? So naturally, I calledMichele and we were both very excited. Not only that was this a perfectgirlfriend evening, but it was a perfect evening in the context of our friendship.So I bought tickets right away.

A couple of days later, I decided to check if the venue wasaccessible. Normally, I’d check such things before I’d buy tickets, but all Iknew was that it was held in the Berkeley Church and in my experience,churches tend to be accessible. Even if it means retrofitting an old church,because… well, they like to be as inclusive as possible. And besides, betweenthe event being held in a church and hosted by Canadian Living, of course it’d be accessible, right?

Nope. It isn't.

That'll teach me to make assumptions.

It did, however, give me another opportunity to beadvocacious. I don't seek these things out, really I don’t. Mostly, I just tryto live my life and in the process, find them. Or maybe they find me?

Now, the Berkeley Churchisn't used as a church, anymore, it's been remade into an event space andy’know? That just makes it worse. Because someone transformed this beautifulbuilding into a space to be used for weddings, parties, meetings and what haveyou, but assumed that no one using a wheelchair would ever want to have such anevent or be a guest at one. This is what Dave Hingsburger meant when he calledsuch design "purposeful exclusion." That this might be a heritagebuilding doesn't really matter, because as far as I know, the Ontario HumanRights Code supersedes all other legislation. And besides… I recently attendeda wedding at another venerable old Torontolandmark and that had been made accessible while respecting the integrity, age andcharacter of the building.

Accessibility is not just about physical design. It’s notjust about making sure that people who use wheelchairs, scooters and othermobility aids can take part as well as their able-bodied friends can. Accessibilityis also about including consideration of all your potential customers in, forinstance, event planning. Because when organizations develop policies thatmandate their events should only be booked in accessible locations, morelocations will become accessible. And I'm not going to talk about why it'simportant to include people with disabilities - or even breathe a word ofDave’s phrase above - because most organizations make their events open towomen and racial minorities as a matter of course, don't they?

There’s the frustration of encountering a place designedwith accessibility in mind, yet not being usable because the Ontario BuildingCode assumes that having a disability means having just as much mobility aseveryone else, except you’re sitting down. And then there's the frustration ofnot being included in planning at all. Of being invisible. And this is the onethat moves from happening mostly in your head to hitting your heart.

It hurts. To be so irrelevant as to not even be thought of.

Right after that emotion hits you, you get angry. So youdecide to use the anger in a constructive way and in a fit of advocaciousnessblog about it and send a letter to the organization or place about the issue. Andall the rest of it. And sure, you know that you're doing your bit to nudgepeople to be more inclusive in the future so that others like you won't havethis experience. And it's a good thing.

But at the end of the day, I'd rather: have gone out with mybest friend to spend an evening with Jann Arden.

How To Ruin a TV Show

2011-10-14T12:58:00.003-04:00

It's been a couple of very, very busy weeks and all I cansay is thank various divinities for vitamin B12 shots. Amazing conveyors ofenergy in a syringe! However, even with this miraculous bit of boost, I am nowso toasted that I'm crispy and plan to spend the next couple of days droolingin front of the TV. Which brings me to the topic of today's post, namely whatthese silly networks do to shows I like, causing me to have to walk away.

Starve Your Female Characters

Castle, along with Dancing with the Stars, remains one ofthe reasons I now am quite fond of Mondays. However, lately they seem to bewithholding food from Beckett (Stana Katic). She's always been slim, but thisseason she's nothing but cheekbones. Every time I see her, I want to give her asandwich. Castle (Nathan Filion), on the other hand, seems to have"bulked up" - perhaps every pound she's lost gets moved to him?Moderation, show!

Glamourize Your Female Characters out of Proportion to TheirProfession

Okay, so I get that when you're on TV, a person’s style goesup several levels, it's part of the game. However, women don't, as a rule,where those ridiculous platform stilettos to work, unless that work involves apole (and I'm not referring to firefighters). Should they, in some weird parallelworld, wear mile-high heels to work, they would likely not wear them at a crimescene (Body of Proof’s Megan)

You should also not modelize you female protagonist toexcess. Vast tumbled tangles of model hair makes it harder to accept thecharacter as say, a homicide detective (Castle’s Beckett). Wouldn’t all thathair get in the way in an altercation with a suspect?

Please also consider downgrading the Sex Kitten (OfficeVersion) look just a tad. Women with serious, responsible and/or powerfuloccupations tend not to paint on their clothes before they leave home. Besides,how are you supposed to move in such things? At say, crime scenes (Body ofProof, Megan and Kate).

Expect Me to Cheer for a Sociopath

Pretending your show iss about justice, when in reality it'smore like sociopathic vigilantism makes it hard to tune in. Having one of your"heroes" use a big truck to ram a car just because the car containsthe "bad guy" and then heroically striding away from the scene in a way thatclearly communicates we are supposed to stand up and cheer does not make mewant to stand up and cheer (Person of Interest). In fact such a repeatedlycavalier attitude towards injury and possible death just makes me stopwatching. It's no longer an interesting show that asks interesting questions,but merely violence porn.

Keep Actors on the Show who Can’t Act

Let me rephrase that: whose acting ability is in such sharpcontrast to everyone else's that should you get into the show, enjoying a nicelittle break from reality, you get pulled out of it with a sharp, screechingnoise every time they're on screen (Body off Proof’s Sonja Sohn and I didn’tthink she could act much on The Wire: The Complete Series, either)

Change Your Female Protagonist to Mollify Those who can’thandle a Three-Dimensional and/or Complicated Woman (Body of Proof)

When the premise of your show is to follow the life of yourfemale protagonist and you make her difficult, abrasive, at times unlikable,with difficulty in relationships, working through some pretty heavy stuff (sortof like House, except a woman and in a somewhat different situation), STAY WITHIT! Don’t change horses in midstream, taking away everything that made herunique, three-dimensional and interesting to watch.

And while I'm at it, don’t change the show to anensemble approach, don't force the humour (because it it is not working) anddon't, please don't, have your previously crotchety female protagonist nowwalking around with a weird smirk whenever she's right about something to thepoint where the viewer suspects the script specifying "Megan walks away, asmug and satisfied smirk on her face." Please try to remember, show, thatyou pitched yourself primarily to women at a certain age and intelligence.When you neuter the show, your audience will leave.

In other words, and I say this to all shows out there,please use the following guidelines:

Assume your audience has a brain
If your male boss feels threatened by your protagonist, you’re on to something. Millions of smart, grown-up women will watch.
Cut the cast that don’t contribute to the story
Make your anti-hero somewhat likeable and/or your villains more despicable
Feed your female cast. Let me repeat that: FEED YOUR FEMALE CAST!
Have good hair, not model hair
Throw out the stripper heels for any character who is not an exotic dancer
Just in case you missed it: assume your audience has a brain

World Arthritis Day: Awareness, Building Bridges & an Exciting Announcement

2011-10-12T12:46:00.000-04:00

Today is World Arthritis Day and this is what I wrote for MyRACentral to celebrate:

""Arthritis? Ihave that, too. My knee acts up when the weather changes."

"Arthritis? Butthat's for old people!"

"Rheumatoidarthritis? It's such a tragedy you won't be able to pursue your dreams."

We face misconceptions about rheumatoid arthritis every day.Very few people know what it is, confusing it with osteoarthritis, often shruggingoff the effects. When someone does know a little about rheumatoid arthritis, it’susually accompanied by a soundtrack of doom, expecting you to spend the rest ofyour life being tragic with a capital T.

These misconceptions have an impact beyond the dailyfrustration of having to educate someone yet again. The misunderstandings aboutRA carry a stigma that affects how we live our lives. Some have to hidetheir diagnosis from fear of losing their career and with good reason - manypeople with RA face discrimination at work. Marriages are lost, families refuse to understand and whenyour ability to go out is as unpredictable as the moods of a 14-year-old girl,friends stop calling.

Building Bridges to aBetter Understanding of RA

Today, October 12, 2011 is World ArthritisDay. Today, people around the globe will work to improve the understandingof arthritis in their communities. The thought of that much positive effort sentout into the universe can give you goosebumps!"

You can read the rest of the post on MyRACentral. The very next paragraph has the exciting announcement. And it's not just exciting because my entire long weekend went into it. It's really, REALLY exciting.

How Lucky Are You?

2011-10-11T10:30:00.000-04:00

Sometime in the last month or so, I read some suggestionsfor writing exercises somewhere and this one struck me. Or maybe it was fromKatie Couric’s book, I forget. Point is less about where I found it than thequestion itself:

How lucky are you?

Nifty question, innit? Since yesterday wasThanksgiving herein the not-so-frozen north it’s a natural one to post about.

I think I'm very lucky. I look around at my life and feelgrateful for all that’s in it. I'm lucky that I have a wonderful family and amfriends, genuine friends, with my mother and my sister. I am lucky that myfamily includes a number of chosen family members, such as John, Ken andMichele and her kids. I’m lucky that I get to be moster/aunt to two beautifulkids named Liam and Morgan. I’m lucky that I’ve found the love of my life andlucky that he’s head over heels with me, too. And the cat’s a pretty luckyfind, too - her sweet goofiness makes me laugh every day.

I'm lucky where I live because Torontohas great summers and this year was amazing. I'm lucky that my neighbourhood isaccessible pretty much everywhere, that even in the middle of downtown, itstill has a unique character as a neighbourhood, one that's a bit like a smalltown. It values green spaces and blending income levels so some buildings arecondos and some are affordable housing. I'm lucky that my neighbourhood istolerant, not caring what colour, ability level or sexual orientation you are.I'm lucky that my province had enough sense to not vote in Hudak’sConservatives and lucky that the people of Torontohave discovered their voice and are putting a leash on our mayor.

I'm lucky that I live in a place that has universalhealthcare, funding sources to help pay for really, really expensive drugs anda government that funds attendant care through taxes. Without any of these, Iwould not be able to have my life. I am lucky that I have RA…

Yes I know. This lovely little post just came to ascreeching halt for you, didn't it? But I am. Because without my RA I wouldn'tbe who I am, where I am, what I am or know the people that I do.

I am also lucky that someone invented Humira, without whichI would probably feel a lot less lucky about having RA.

And I'm lucky that somebody invented the blog, becausewithout it I would not have a job I love or know all the really cool people Ido. I'm lucky that it every day, someone will leave comment on my blog eventhough they know they probably won't hear back from me and that's another waythis blog community makes me feel lucky. Because I have friends who understandthat I care about them even though I can't keep up an energetic – or much ofany - correspondence.

And I'm lucky that the sun is shining, there's food in myfridge and my biggest problem today is that I have too much to do.

How lucky are you?

The Best Advice You Ever Got

2011-10-07T10:30:00.000-04:00

I'm reading The Best Advice I Ever Got: Lessons from Extraordinary Lives by KatieCouric. She asked a plethora of well-known people from entertainment,industry, philanthropy, sports, politics and everything in between to tell her what was the bestadvice they ever got. It's a terrific compilation of nudges, comfort andencouragement. It's good if you're not sure where you're going, have a choiceto make, feel disconnected from your dreams or need some motivation in themiddle of a hard slog. Get the regular book version, though. The narration isterrible. Entirely too many people e-nun-ci-a-ting as if they're speaking tothe dimwitted.

Anyway, I decided to do my own little version of it. I'll gofirst.

My parents always told me to do my best and celebrated myresults. When I got a D (as tended to happen in anything math-related - allthose years of hospital school weren't really conducive tounderstanding that field), they asked me if I'd done my best. By then, this philosophybeen so much part of my upbringing both in terms of them teaching it to me andme seeing them do their best every day, too, so the answer was usually yes. Andthen we celebrated as if I had gotten an A.

All these years later, I changed the name of that philosophya bit to "buy the ticket," but it's made from the same cloth. Do yourbest and celebrate the effort.

What's the best advice you ever got?

CN Train

2011-10-05T10:30:00.000-04:00

An Open Letter to Dr. Phil

2011-10-02T19:55:00.002-04:00

Dear Dr. Phil,

Late last week, there was a bit of a kerfuffle on Twitterabout a statement on your website. In the summary of the show Saving Alex, youare quoted as stating that as a consequence of being obese, Alex may develop"medical complications … including rheumatoid arthritis, hypertension andheart attack."

Rheumatoid arthritis is not a medical complication of beingobese. Osteoarthritis, on the other hand - the "wear and tear"arthritis - can be. RA is a chronic autoimmune disease in which the immunesystem attacks itself, causing a chronic inflammation in synovial tissue anderosion of the cartilage that cushions the surfaces of joints. We don't knowwhat causes the immune response that triggers rheumatoid arthritis, althoughthere are some indications that smoking, periodontal disease and a certain typeof bacteria in the gut may be involved. It affects 1% of the population, womenthree times more often than men. In the last 12 years, the Biologic medicationshave made a huge difference in the treatment of RA and it is now possible for someto achieve remission. There still is no cure for this illness.

I have RA. I have had RA since I was four years old andstarted using a power wheelchair at 16. In 2005, one of those Biologics savedmy life. I still use a wheelchair and still have high levels pain every day,but I have a life and a job and I laugh every day. I am also passionate aboutmaking life better for others who live with RA and advocate for awareness wheneverI get a chance.

I'm pretty sure that you don't personally update yourwebsite, but because it is your site, the quote is attributed to you. Thismakes me wonder if someone made a mistake when updating your website. Regardlessof the source of the quote, you/they are not alone in mixing up osteoarthritiswith rheumatoid arthritis. In fact, the #1 frustration of those of us who livewith RA is that most people believe that the bit of osteoarthritis they have intheir pinky or knee is the same as RA.

Dr. Phil, I am not going to engage in an impassioned andsnarky diatribe about the quote and what it may (or may not) say about you. Thatgets us nowhere. Instead, I will ask that you join us in creating awarenessabout RA. You are in a position to inform. You have a very popular show thatreaches a lot of people and can be a terrific partner in helping us advocatefor a better understanding of what RA is and how it affects people's lives. Thisis the type of understanding that can lead to more funds being raised forresearch. Research that can lead to many more amazing advances in the treatmentof RA and one day lead to a cure.

Would you consider doing a show on rheumatoid arthritis? Itmay not lend itself to the usual format of your show, but every now and again,shaking things up in the name of doing good can be worth it. Perhaps invite Christine Schwab, author of Take Me Home from the Oscars or Karen Ager, who wrote Enemy Within. I'll happily volunteer to join you in a discussion of RA. Kelly Young is also a terrific RA advocate, as is RA Guy. The point is that there are many knowledgeable health activists out there who can help you in educating your audience about RA.

October 12 is World Arthritis Day. Please join us in making2011 the year that rheumatoid arthritis became better understood.

And for those of you reading who are not Dr. Phil, please help spread the word by sharing this link. Maybe if we all ask, he'll respond.

Update, October 12, 2011: Just in time for World Arthritis, some exciting news on this issue has happened!

Taking A Leap

2011-09-29T20:20:00.000-04:00

I discovered that part of the problem on doing a rewrite of your book is that it inevitably leads to becoming convinced that you're an amateur and an atrocious writer. Asking people you care about to tell you what's wrong combined with turning you on a very critical eye on chapter after chapter leads to extreme self-loathing. Charlie on the heels of that is a decided aversion to writing. Because why would you do something you so very obviously suck at.

Luckily, I have a writing buddy who told me two very important things. One, that this detour into believing everything you do is shite is entirely normal for this stage of making a book. And second, that the way out is to write something silly. To play around with writing, rediscovering the joy of it. And she's running for breast cancer, so if you're looking for someone to sponsor, I highly recommend Laurie.

We both produced a small piece of silliness for our meeting this week and this was mine:

Albert stood on the edge of the pier looking into the water. The wind had picked up today and below him, he could see his friends bopping in the choppy waves. If he looked out over the lake he would see whitecaps, but he very decidedly did not look out over the lake. He could feel the queasiness building in the pit of his stomach and was starting to believe his face was taking on a sickly greenish tinge. His friends yelled encouragement from below, although for some, it took the form of taunting. There was nothing for it, he'd have to jump in. Today was the day, there was no avoiding it. He wished he had some Gravol and if he wasn't feeling so ill, he'd have laughed.

Who, he thought, had ever heard of a seasick duck?

His toes clutched the edge in a last-ditch effort to hold onto the stability of the shore. And then he stretched his beak into the sky, closed his eyes and leapt into the waves.

Pain Management in Recovery and Addiction

2011-09-28T11:10:00.000-04:00

My latest post for MyRACentral is about managing pain when you're addicted or in recovery:

My friend T. lives with high levels of chronic pain. The pain makes it difficult to get through each day and it's not just having an impact on his physical function, but on his relationships with his family and friends, as well. Despite this, he's not taking any pain medication. T. was an alcoholic and has been sober for nine years. He's afraid that if he starts treating his pain, he might relapse and start drinking again.

Those of us who live with high levels of chronic pain are often faced with concerns about addiction to painkillers. Sometimes it's our family and friends who get worried and sometimes it's our doctors. The goal of managing chronic pain is to "obtain reasonable pain relief while maintaining a maximum level of function" (Prater, Zylstra and Miller, 2002). At HealthCentral, we do our best to help you get that kind of pain control by giving you the tools you need to counter concerns about addiction. The fact is that the risks are generally quite low. But what if you are in recovery from addiction or are still struggling with it? How can this impact treatment for your pain?"

You can read the rest of the post here.

Out Among the English: Body Language & Disability

2011-09-26T10:18:00.003-04:00

A couple of weeks ago, I wrote about physical barriers tosocial interaction, mostly in terms of design issues and aspects that can be corrected by having some chairs in the place. Today, Part II. Namely physical barriers to interpersonal communication.

Say that you’re

At a formal occasion - a wedding, formal business event and the like - and you’re seated at a large round table with 9 other guests. The person next to you is having a fascinating discussion with the person next to them and you want to join in. What do you do?
At a party where you don't know anyone and don't feel like spending any more time standing by yourself by the potted plant looking fascinated by what your invisible friend is saying. You even feel brave enough to sidle up next to one of the multitude who you don't know and try to start a conversation. What do you do?
You're talking to a stranger, perhaps at a party or maybe at a bar, museum or in a restaurant on a first date. You’re feeling that tingling in the pit of your stomach that means you'd like to explore being much more than friends. Short of stating it baldly or pouncing right there, in the bar, restaurant or bus stop, what do you do?

Much of our conversation happens in the body. What we say is accompanied by gestures and movement that elaborates, enhances and sometimes contradicts the spoken word. And it’s cultural, too - how you say things with your body can differ as much from country to country as spoken language does.

Enter the disability as complicating factor. For the purposes of this post specifically those requiring the use of a wheelchair. And shortly, even more specifically the type of disability that affects mobility in other bits in addition to your legs.

How many conversations start with a look and a smile? It's how we test the waters to see if conversation would be welcome, it’s how we engage in that first leap, build a bridge between two people. But if your smile happens at other people's crotch level, it can be a bit problematic to catch somebody's eye. From a woman’s point of view, you might consider it payback for all those times women had to tell men that their eyes were in their head, not at chest level, but very few people notice the direction of your gaze if they're looking down at the top of your head. So you have to say something to engage with someone and if you're in a noisy environment, whether in a talky crowd or place where the music is more than merely background, it involves yelling. All while craning your head back so you can do that eye contact thing. That is, if the person hears you and looks down and not withstanding issues with your neck that make it impossible to look up.

The party being seated can help somewhat, because at least you eyes are more or less at the same level, but let's take a visit to that large round table and see what else happens. In some ways it's a good equalizer because you are an exact same situation as an able-bodied person - those tables are so large you rarely talk to the people on the other side of the table. But you do talk to the person seated next to you and sometimes, a smallish group is created when the person next to them joins in. But how do you indicate you would like to be part of such a conversation? You lean forward and over, close to the person next to you and the two people having a conversation understand that body language cue and (if they're not hopelessly rude) make room to include you. But what if you can't move like that? What if your body isn’t good at leaning forward and to the side leaving you without a cue - and your neighbours without a clue - that you'd like to contribute. And then there’s the part that staying apart instead of leaning in is also a body language cue that you're not really interested in meeting other people. So there you are, not able to move much, the place is noisy so it's difficult to yell "hey, I’d like to talk with you guys!” Not to mention not good manners and just not something that most people is comfortable doing in such a situation. Because we've all seen that movie where a hush falls the nanosecond before you open your mouth and then the entire room will stare at you.

And then there's the part about the subtle body language that tests the waters of romantic interest. I’ve watched TV programs about body language in such situations and they include leaning into the other person (covered above), touching them on the arm (what if your reach is limited?), grooming gestures to yourself and the other person (difficult if your mobility and dexterity is affected). And other people don't touch you, because the wheelchair creates a pretty effective barrier to touch – and that’s enough material for several posts - not to mention that it seems as if some believe the cripple is going to crumble into pieces if touched. It leaves you in an odd no-(wo)man's land of having to read between the lines or perhaps being very forward, skipping over that subconscious dance of two bodies checking interest level in each other. Which usually doesn’t work because you haven’t had the dance and without it, things don’t bud quietly and you’re out of sync. Which may be it's one of the contributing factors to people with disabilities often being viewed as asexual (aside from lack of imagination on the part of the ablebodied). When that subconscious dance may be impossible, just as it can appear as if we are not interested in conversation, without the appropriate/recognizable body cues, we appear not interested in romance or sex. Which also is a post in itself.

I'm starting to wonder if much of the space around a person in a wheelchair that you so often see in a public or social situation is due, at least in part, to us not sharing a language, physically speaking. Our body language is not recognizable to others, in much the same way that Russian is unintelligible to most English speakers. Although it does differ in a very significant way. Because the Russians can learn English - and by hanging around someone who has a disability, the English can learn Russian - but we cannot learn a different body language. Because if you can't move freely, you can't speak ablebodied.

In Praise of Sloth

2011-09-22T10:33:00.006-04:00

It's been 10 days of not doing very much at all aside from reading good books, watching good TV and lollygagging and it has been bliss. Just bliss.

It took me more days than I care to admit to stop with the "shoulds." Every time my internal voice said "you should be (insert work-related or other type of obligatory task here)," I managed to very clearly say NO and push the urge away.

It is remarkable how many shoulds there are in a day. I don't think it's good for us.

Therefore, I decided to banish the shoulds from my life (at least for two weeks), eventually becoming nothing but a walking (metaphorically speaking) Id. I got so good at the banishing that when last Monday, one of the last really nice days of the summer, I felt I should be going down to the lake, I somehow managed to persuade myself that I shouldn't be doing any such thing if I didn't want to. So I stayed inside all day and messed with some photos instead. There was something wonderfully wanton about holing up inside on a beautiful day, very deliberately not going out and enjoying it. It may have been even more enjoyable than going outside to enjoy it!

Every day for the past two weeks, I've gotten up and asked myself what I felt like doing and usually, the answer was read, talk to friends - or more often, not talk to anyone at all - noodle on the computer and nap. And I did and in the process started viewing my busy life as just a tad crazy. I started thinking that this value we put on being busy, on getting a lot done, and moving so very fast is… well, nuts. If I don't have time to notice how the sun sparkles off the water or that pigeon fighting with a french fry or the colour of the sky at sunset, then my priorities are really screwed up.

In Word by Word, Anne Lamott says "being busy is the drug of the 90s. It's keeping us all stoned and wasting our lives." That lecture came out in 2004 and by now, I'm starting to suspect being busy may have replaced religion is the opium of the masses. The thing that keeps us from paying attention and realizing that life is supposed to about more than the busy.

I need to get back to mindfulness. Not should. Need, as in it’ll be good for me and my ability to prioritize with some degree of perspective.

So after all this lollygagging, do I feel better? Well, sometimes yes, sometimes no. Overall, there is a bit more energy, but I still run out fairly quickly and in between the overall bit of improvement, there have been days where I've felt as crappy as I did at the start of this time away from work. Which wasn't supposed to be the point of this whole thing, but I can't argue with my body. I can ask it repeatedly why the hell it's not getting any better, but no answer. It prefers to remain mysterious.

I do feel well enough to be able to have gained some perspective and in retrospect, working what for me is the equivalent of a full-time job, rewriting The Book, supporting two family members through different, but equally intense events, dealing with root canal and crown, as well as an unreliable wheelchair (and the exorbitant cost of the latter two) to mention just the most memorable parts of this summer is a recipe for burnout and depression. No wonder every day had begun to seem insurmountable.

And hence sloth. Because sitting by the water doing nothing and having no plans for the afternoon other than going home to eat lunch when I get hungry gives you time to think and process. To imagine and create. And to get en effin’ grip.

I'm not quite sure how to incorporate sloth once I return to work, but I'm thinking I should start with taking one day off a week. There's a reason that a certain divinity rested on the seventh day. It's good role modeling.

Half and Half

2011-09-20T12:24:00.002-04:00

The Killing

2011-09-15T14:51:00.001-04:00

So… there's been sitting at the lake, lots of reading and in the evening, I’ve been completely and utterly obsessed with the Danish series Forbrydelsen (The New York Times has a good article about it). In English, it's called The Killing and if that sounds familiar, it's because there is an American remake airing on AMC. The remake has gotten a lot of good press, but from what I can see in the various episode guides, the 13 episodes only take you through part of the case, and not to completion as in the 20 episodes of the Danish series. Maybe that's left for season two? Every review I have read of the remake has mentioned that despite its excellence, you owe it to yourself to (also) watch the original.

Having just spent the last week or so watching two or three episodes a night, I wholeheartedly second that recommendation.

Forbrydelsen starts with the murder of a teenage girl and follows the investigation, the impact on her family and the municipal election campaign that becomes tangled up in the case. Each 55-minute episode builds within itself, ending in a nailbiter - sometimes just warranting gentle gnawing, sometimes leaving you without anything resembling a nail left on any of your fingers (or whatever else you do when watching engrossing, tense TV). It is a fantastic slow burn, both within each episode and over the entire season, as well. The main character is Sarah Lund, the lead investigator, but to call her the main character is to ignore that this is an ensemble piece. The show is populated by three-dimensional characters played by excellent, subtle actors who get under your skin and into your head and draw you completely into the story. A story about which I will say very little else because you also owe it to yourself to discover the magic without any knowledge of what happens. It’s more fun that way.

One of the things I thoroughly enjoyed about this series (other than the story) is that each episode is 55 minutes. You get so used to an episode of a TV show being the 41 minutes that the major networks believe is sufficient time to tell a story, because it's essential to have 20 min. of commercial every hour. Being able to disappear into a story that takes its time is so much more effective in terms of making the story come alive. I also loved that it took 20 episodes to tell it - again, this slow burn, take-it's-time storytelling pulls you in so much deeper, makes you feel more and get your mind moving in terms of trying to figure out who did it. You’re actively engaged in the process, not just passively watching. The other day, I read an article in Entertainment Weekly about the American remake of Primes Suspect. Never mind the argument that remaking it is a crime in itself, but instead of each season being about one crime, this one is going to feature the "solve it all in 41 minutes" that is so characteristic of network television. And - forgive me for my moment of being a Euro snob - I think it’s also the difference between European and North American television. Because heaven forbid you should take a while. Have character development. Nope. Let's rush through it, skimming along the surface of the characters and the story in 41 minutes. No wonder so much of it is junk food for the mind.

Another thing I enjoyed thoroughly about Forbrydelsen was the visit to Denmark. For the past week, Danish has been at the forefront of my language center and it's been quite a trip to feel as if speaking English isn't quite right. I also learned much about present-day Denmark and in so many ways, it hasn't changed at all. They still address everyone with the informal 'you,' even politicians in high places. The only exception is the elderly, who are still addressed using the formal 'you.' Everything - not just the language - is wonderfully informal. The lead investigator, Sarah Lund, comes to work every day in a pair of well-worn, comfortable jeans and a handknit sweater - which has fans - and carries not a briefcase, but an amazing leather bag very similar to the ones my teachers carried way back in high school. High school girls still wear overalls and scarves, everyone is still on a first name basis (again, with the exception of the elderly) and yes, that includes your boss, your teacher, your mayor. And speaking of handknit - watching this series is a treat for knitters. I'm pretty sure you can invent a drinking game about "spot the handknit sweater" and if you combine it with taking a drink every time somebody lights a cigarette in a public space, such as a police station, you could get quite inebriated by the end of each episode!

I will say this: 20 episodes was stretching it a bit - I think it could have been just a bit tighter if it was two or three episodes shorter than that. Still, it didn't take away from the overall experience which was compelling. I keep reading about people "marathoning” the first season and completely understand. There were times when I was grateful that I have an attendant coming at a specific time to help me get into bed because otherwise, I would have stayed up all night watching episode after episode after episode.

The DVD set is unbelievably expensive in North America ($249), but if your local video rental store (or mail equivalent) doesn't have the series, there's a way around it. Get it from Amazon UK at a mere £38. Well worth it - you won't regret the purchase. And best of all, there's a season two – released on DVD in Decemeber - and they’re in the middle of filming season three!

Rest Stop

2011-09-13T10:25:00.005-04:00

I’ve been spending a lot of time down by the lake since I last posted. You know how much water means to me - it soothes me, centers me, heals me. The fact that there is now a place so close to my home where I can go get in touch with those elemental forces means so much. If you turn your face into the wind, it is almost like the ocean. Not the smell of salt, but the unmistakable scent of a large body of water and with the beach there, sometimes, it's mingled with the smell of sand and it feels almost like home.

Lately, something interesting has been happening down by Sugar Beach. There are geese. A lot of geese.

I first noticed it Saturday, seeing small groups of them swimming around close to shore. This is new - all summer, I've seen only seagulls and the occasional duck (well, there was that Cormorant, too). Geese don't tend to hang in this neighborhood, so having recently discovered the fascinating in birdwatching, I set about doing just that. It was a beautiful day, a bright sun in clear skies and low enough that the water sparkled with a brilliance never seen in a princess cut solitaire and in between the sparkles, little groups of geese came paddling by

I wandered around the area and in the small, quiet harbor between the beach and the sugar factory where sometimes, great container ships from far away are docked, taking on loads of sugar, more were gathering. Two groups, sometimes three

The next day, I was back and so were they. I saw them flying in, sometimes a few together, sometimes only one at a time, landing in the water - not always gracefully, the weight of the goose can create quite a splash - and joining others already there. And there were a lot there, both in the water and up on the narrow dock above, nestled close to the factory

They seem to stay in the smaller groups in which they came in first, gathering over by the sugar factory side of the small harbor, getting acquainted, jostling for space, making conversation and sometimes arguments would break out about who got to be where. The honking of them was a beautiful soundtrack to a beautiful day.

Apparently I need a Steadicam

Eventually, they would iron out their differences, decide which group to join and there was an ever evolving flow of integration, blending and growth.

Even the sailboats got into the spirit of things and bunched up in a flock

And then, when the time was right - and I never did figure out how they made that decision - a group would take off over a silvery lake to parts unknown.

According to Google, the Canada goose doesn't migrate until ice forms on bodies of water, but they are going someplace and they all know about it. Near as I can figure, Sugar Beach is a rest stop on the journey. If the weather holds, I'll be back down there today to check on their progress.