Tuesday, February 28, 2012



On Friday I had a 1 1/2 hour meeting. It was no big deal - we were meeting on Skype, from the desk in my office area and really shouldn't use too much energy. Or so I thought. Because it turns out that thinking and focusing uses a lot of energy.

At about the one hour mark, whatever energy I had left started leaving my body. I wasn't getting tired so much as actually feeling energy and strength drain from my body like water from a barrel. By the time we signed off, I had nothing. I felt like RA Guy at the supermarket, unable to move. Perhaps not quite as catastrophic, but I could see it from where I was. This has never happened to me before. I've been tired, felt exhausted, known that the crash was imminent, but never experienced such a profound low in energy without being quite sick.

I managed to scrape together some lunch and it helped the dizzy and the nausea a little. Had a nap, a weird one with what felt like fever dreams, half awake, but with people and conversations happening around me despite it being just me and the cat in my apartment. The rest of the evening was spent in a haze of feeling awful. There was lightheaded, there was nausea, there was feeling as if every sound was an assault on my eardrums and I know The Boy and I had a conversation, but none of it went into even short-term memory.

By yesterday, I was well enough that I could write an article due later today, but when it was done, the wooziness was back and I wasn't feeling right. I went to see my doctor, told her about Friday, checked my blood test results from last week and with the exception of being low on vitamin D, I am perfectly fine.

"How," I asked rather plaintively (OK, maybe petulantly), "can I feel like such crap and yet be perfectly fine?" And she talked to me about having no energy left and pacing myself and I didn't really listen. Because I don't when people tell me this - if I pace myself, I'd never do anything.

I went back home and fought the urge to work some more, telling myself that two hours in the day was enough and was pleased with my progress. Immediately thereafter, I angsted about how I was going to get through a two-hour meeting planned for the evening, one in which we would be discussing Very Important Things. Something made me take a look at the agenda and as I did, a small voice in the back of my head asked "is any of this more important than your need to rest?"

And then I e-mailed my regrets to the meeting. Spent the rest of the day having a nap, a nice dinner, watching wonderfully mindless TV, then reading a good book.

Last week, I mentioned how believing you’re indispensable is the first sign of an impending nervous breakdown. I have discovered it has a corollary. Believing everything on your list is absolutely crucial is the first sign of an impending physical breakdown.

I have completely and utterly lost perspective. When the people who love you say they worry about how much you're working, you should listen. When your doctor tells you to pace yourself, you should listen. When your body begs for mercy, you should listen. 

Is any of this more important than your need to take care of yourself? 

It is a question I need to ask more often.

Thursday, February 23, 2012

Respecting the Crash

By noon last Tuesday, I was exhausted. This is not a good sign two days into the work week. I kept going, pushing through the haze of tired and somehow made it to the weekend. Saturday was spent moving in glue and looking with dread at a week filled with entirely too much, but not knowing what to do about it.

When people ask, I say I work part-time. Sometime in the past week, I realized that isn't true. The job that pays me may be part-time, but when you add all the other projects in which I'm involved, you end up with the equivalent of a full-time-and-then-some job. This was a bit of a surprise to me. This also made me feel less freaked out about being so tired all the time.

Which brings us back to this past weekend. On some level, I realized I was crashing - starting the day with a Coke to get that shot of caffeine three mornings in a row and it not working was a huge clue - but was at that moronic stage where I was fighting it. I looked at all the meetings and deadlines this week, trying to tell my body "just make it through this week and I'll give you a week off," absolutely convinced that nothing could possibly be canceled.

Believing you’re indispensable is the first sign of an impending nervous breakdown.

And then, shortly after getting up on Sunday and having nothing left in me to do anything, the lightbulb went off. It was so bright that I'm sure scientists are currently studying satellite photos of Toronto trying to figure out what that flash was. I realized that this is what usually happens when I get sick. The "just one more week" syndrome. The part where I make myself work like a demon for five days, believing that I just have to get X, Y and Z done and then I can take a week off. And then a nanosecond after I cross off the last item on The List, I get sick and lose the next two weeks or more.

I realized that I was a juggler who had added one too many balls, desperately trying to keep control. Yelling "I've got it, I've got it!" while everything is crashing down around me, I very clearly don't have anything other than a raging case of exhaustion and an overinflated idea of my own capabilities. 

I'm starting to think that despite 30 years of having a disability, I'm still in denial about the reality of having a disability.

So I sent some e-mail, among other things taking this week semi-off from work, canceled a meeting or two and continued to grump my way through the next few days. Because although I am not officially working, there were certain things that couldn't be canceled and let's just say I'm working part-time. 

And yes, this is another in a series of posts about me doing too much, crashing and trying to figure out how to avoid that in the future. I'll get there eventually, but it'll probably be a while.

Still, progress. Of a sort.

Friday, February 17, 2012

In Other Words

On January 23, someone I know forwarded me a link to an article from the Canadian national newspaper the Globe and Mail. The headline "Rheumatoid Arthritis: not the life sentence it used to be" is certainly an attention grabber. And it is a good article. It's accurate in its discussion of the science and it pays close and detailed attention to the consequences of mistaking RA for osteoarthritis.Although it is perhaps slightly rosy in implying that everyone can go into remission, it is one of the best articles I have seen on the topic in a very long time.

So… what am I on about today, then?

 Does this look confined?

I am on about a phrase.

The second sentence of the article is as follows: "Within a month, Cheryl Koehn, a former Olympic volleyball player, was in agony as more than 35 joints in her body became so swollen that she was wheelchair bound." 

Can you guess what phrase I'm about to give a rant? G’head. Guess.

If you guessed "wheelchair-bound," you win a prize! Not anything tangible, mind you, but justification for feeling unbearably smug for the rest of the day. We all have days where we need to feel unbearably smug. You can bank it, if you want.

30 years ago, when I was in high school in Denmark, we had to do presentations in English class. One of my friends decided to do a play about English metaphors and how confusing the language could be. One of the characters in the play was "wheelchair-bound," so naturally we tied me to my wheelchair with a length of rope.

As is so eloquently stated in the Style Guide to writing about disability at the National Center on Disability and Journalism, "[a] person is not bound to a wheelchair; a wheelchair enables a person to be mobile." They also describe the phrase "confined to a wheelchair" as inappropriate. It is because wheelchairs liberate, they do not confine. Without a wheelchair, I would be confined to bed.

One word they do not mention is the c-word. No, not the c-word that no man should ever say to a woman unless he wants to be emasculated, the other c-word. Cripple. Crippled. Most people, including the media, do seem to get that this is very much not acceptable and I wonder if that is why the Style Guide didn't include it. Maybe it's because they assume that no one in their right mind would use that word these days. Except it’s still around. I've seen it in several places lately and every time I do, I cringe. Its effect is similar to the n-word when applied to blacks and the f-word for gay men. It has no place in modern discourse, no place in modern media. In fact, they words can really only acceptably be used by the groups themselves as they reclaim these demeaning and destructive words to sap them of their power.

On this side of the border, Human Resources and Skills Management Canada has published A Way with Words and Images: Suggestions for the Portrayal of People with Disabilities. This is a guide to the public and especially to the media. The introduction states "people with disabilities are asking Canadians, and the media in particular, to use respectful terms when writing about them are about issues that affect their lives." They have an excellent list of outdated terminology with corresponding suggestions for respectful language.

Twenty years ago, when I was entering into the employment equity field and acted as a disability advocate in a somewhat different way that I am now, there were several style guides to language about disability going around. At the time, these style guides were offered to organizations and anyone who seemed in need of that and that included the media. Particularly the media. It is so incredibly disheartening that 20 years later, the same language prevails. Much has changed about disability, much has changed about accessibility, but very little has changed in the way the media portrays those of us who live with disability. We are still wheelchair bound. We are still confined to wheelchairs. We are still crippled. We are still "victims of [insert condition here].”

Why does it matter? Because as A Way with Words and Images states so eloquently, "attitudes can be the most difficult barrier people with disabilities face in achieving full integration, acceptance, and participation in society. Since words are a mirror of society’s attitudes and perceptions, we should all put great thought into how we present information about people with disabilities, to help overcome negative attitudes and shape positive ones."

Accessibility isn't just about ramps, washrooms, audible fire alarms and texture on the floor. It’s about the language we use to describe each other. Without respectful language, there is no equality.

Tuesday, February 14, 2012

Show Us Your Hands! Launches Photo Book Project to Help Raise Awareness of Inflammatory Arthritis

Show Us Your Hands! Launches Photo Book Project to Help Raise Awareness of Inflammatory Arthritis
(February 14, 2012) - Show Us Your Hands! is pleased to announce its Photo Book Project, the latest in a series of successful initiatives aimed at uniting the community of individuals who are living with inflammatory arthritis, and increasing the public’s awareness of this group of diseases. This photo book will showcase both the hands and the stories of people from around the world who are proud of the fact that no matter how much pain and damage their hands have incurred, their hands still work, and their hands still do.

Starting today, Show Us Your Hands! invites individuals who wish to be included in this photo book to submit a brief explanation of what their hands do, and why their hands are special. A Call For Submissions form is available online at www.showusyourhands.com/photo-book-project. The deadline for entries is March 2, 2012. Individuals who are selected for inclusion in this photo book will be notified in mid-March.

The Show Us Your Hands! Photo Book Project will be released as part of Arthritis Awareness Month this coming May. The photo books will be bookstore quality, with top-notch binding, gorgeous paper, and professional printing. They will be available for purchase in more than 70 countries, and all of the net proceeds from the sale of these items will go towards the costs and expenses associated with current and future community projects by Show Us Your Hands! “By showing the world what our hands can do, these books will become portable ambassadors for increased awareness. We look forward to meeting the people behind the photos,” says founding member Lene Andersen.
Autoimmune diseases occur when a body’s immune system mistakenly attacks healthy tissue. In the case of inflammatory arthritis a person’s joints are frequently attacked, resulting in chronic pain and debilitating inflammation. The most common inflammatory arthritis diseases are Ankylosing Spondylitis, Juvenile Idiopathic Arthritis, Mixed Connective Tissue Disease, Psoriatic Arthritis, Reactive Arthritis, Rheumatoid Arthritis, Scleroderma, Sjogren's Syndrome, Still's Disease, and Systemic Lupus Erythematosus.

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

Monday, February 13, 2012

Tinks at the ROM

This weekend, we took the Tinks to the Royal Ontario Museum so they could see dinosaurs - 'scuse me, DINOSAURS! - for the first time.

Liam quickly found one and posed happily

We'd rented a wheelchair for Mormor (Danish for Grandma) so she could enjoy the day instead of walking miles. I think the kids enjoy having adults down at their level. 

We spent lots of time looking at information screens

and comparing it to the skeletons. Watching the kids react, each in their different way was a treat. During the first hour or so, Morgan had the Face of Wonder pretty permanently, took her time to absorb one thing, then move on to another. During the same time, Liam... well. He pinballed. It's the only way to describe it. He was so excited, he bounced from one thing to another with the speed of light. It's why I have no photos of him from that first hour - well, none that aren't a blur of movement, that is. After he'd gone through the Bat Cave (twice), he simmered down a little.

After seeing skeletons of dinosaurs, we went to dig some up. There's an area at the ROM with sandpits in kid height. The kids get goggles and brushes and try to be archaeologists.

Morgan might have a future in this - she didn't want to leave.

We then visited the Natural History area and Liam was completely unfazed by this resident. I, on the other hand, had no idea king cobras were that big!

 This day was a gift and a joy. Watching the wonder in the kids' gave us all a sense of wonder, too. 

Wednesday, February 08, 2012


It is almost Valentine's Day and tales of love flutter about wherever you look. They are like verbal cupids with wings made of verbs, nouns, adjectives and altogether improper punctuations, for love brings with it a gush of emotion not responsive to the strictures of grammar. And these tales of love are this year joined by other, slightly odd declarations of fervent admiration and all-encompassing joy. For this year, Dave is running the February Disability Blog Carnival and has decreed a theme of love, but not in the traditional sense. This year, we're writing about love we have for the things that make the world accessible to us.

I have two and I couldn't choose between them, so today is the double gush of love.

With one, I have the kind of relationship that makes you choose the "it's complicated" as your status on Facebook. Because with this one, love has not run smooth. In fact, love has run decidedly un-smooth and she has made it very difficult for me to get to this point of telling the world how much I adore her.

She is Regan, my power wheelchair. She is beautiful, no outward signs that one should approach her with caution. Clad in a snazzy metallic electric blue with black accents, she flies down the street with speed and elegance, carrying me with her and the two of us look like one, a happy union.

Except within she has problems. Within, she has a persnickety personality, one that has in the past caused her to buck like awild bronco or put all four paws in the ground like a puppy that's had enough of the walkies. If only five or 10% of this type of wheelchair have a particular problem, she'll be one of them. I know this by now and so does Dave the Wonder Repair Guy and the other Wonder Dave and come to think of it, the entire shop where my chair has become the Textbook Case to discuss with new hires. Because if they can figure out Regan, they can do anything.

Still, I love her deeply and maybe more because she is so hard to love. She makes life exciting, adds that extra frisson of risk that qualifies as my dose of living on the edge. Without her, I might have had to take up skydiving, but because Reagan is in my life, I have all the danger I need.

And behind the prickles on her exterior that make her look like a rolled up hedgehog, she is there for me (knock wood). Underneath the snapping teeth, she (usually) gets me where I need to go, whether it is into the kitchen to make a cup of tea or further afield, for walks along the waterfront. Below the snarling, she is my (mostly) faithful companion and we have a (largely) happy union.

Without her, I would be stuck in bed. With her, I am liberated and free.

My other love is much less complicated. Although, to be honest, our history has been a bit rocky, but thanks to a lot of hard work, is now running smoothly. My other love is voice-recognition technology. Long ago, when we were first introduced to each other through mutual friend, it - unlike my chair, it has no gender - was called Via Voice and put up more of a fight than Regan has ever done. I remember that first session of training the program where after two hours, we were stuck, unable to communicate with each other. I tried sending an e-mail to the friend who'd played matchmaker and naturally, wanted Via Voice to write it with me. When it came to the subject line, I said "damn" and it wrote "Beirut." This was not an auspicious start and we never really dated much again, neither of us yearning for that particular level of frustration in our relationships.

Later, I met Dragon NaturallySpeaking and although it has much in common with that personality I had previously met, there was one crucial difference: we could understand each other. We did need to work together to make that understanding better and every now and again, it wildly misinterpreted what I was saying. One of my favorites was when writing an e-mail to a friend, I responded to a question about the Tinks’ exposure to English and Danish by saying we were going to try to help them become "as bilingual as possible" and Dragon thought I said "as bilingual as Baltimore." A city I had not previously known was bilingual. Thus, it helped me learn more about the world.

Dragon worked hard on its issues and with help from its friends at Nuance, it became better and better. Communication barriers were lowered, almost erased and it continued to demonstrate its eager willingness to learn how to best interact with me. Together, we trained each other and by now, our teamwork is almost seamless. Sure, we each still have a few kinks to work out. I tend to mumble and every now and again, it has a conniption fit and wails that it is damaged, wants to be reinstalled because only starting over from the beginning will solve the world's problems. I give it a hug, murmur soothing words, reboot my computer and all is well again between us.

Because of Dragon, I have a blog. Because of Dragon, I have a job. Because of Dragon, I have a manuscript. Because of Dragon, I have friends I would not know if I couldn't exchange e-mails with them.

Without it, I'd be silenced. With it, I am liberated and free.

Thursday, February 02, 2012

Silent Poetry Reading: for Claire

Every year (more or less) on this day, I participate in the Bloggers Silent Poetry Reading on the Feast of St. Brigid. I’ve never been able to find out how it originated, but went with the flow of what I saw around me, posting poems I liked. I’ve posted an ode to nature by the 17th century poet Thomas Traherne, a poem about grief by Pablo Neruda and one of myown, as well.

This year, I found out what this silent poetry reading is all about and it turns out I’ve been doing a sort of amended version. Because seven years ago, this started as a pagan bloggers’ celebration of the goddess Brigid, patron of poets, healers and midwives.  The idea was to post your own poem to Brigid. I like that. A lot.

I’m still going to continue my tradition, though, posting a poem I like, rather than one I wrote myself. Still, this year is very much connected to Brigid.

It has been two years since we lost out beloved Claire and we are still raw and hurting. This wonderful woman is much missed. A few weeks ago, all of us who love her got together on Facebook to remember her. Stewart, Claire’s father, reminded us that she would want us to remember her with love, not sadness. And he’s right. Claire was a healer herself nurturing those around her, helping them grow and heal and find a safe footing on which to create a life. She was a midwife of souls.

On the day of Claire’s funeral, her sister Helen read aloud a poem that helped us all get through it. And it is a poem that still rings true, now less sad, now more about continuing to remember her influence in our lives. And through us and what we do that is inspired by her, she’s still very much here.

i carry your heart with me by e.e. cummings 

i carry your heart with me (i carry it in
my heart) i am never without it (anywhere
i go you go, my dear; and whatever is done
by only me is your doing, my darling)
                                  i fear
no fate (for you are my fate, my sweet) i want
no world (for beautiful you are my world, my true)
and it's you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than the soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

ii carry your heart (i carry it in my heart)