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 17^th 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)

   

Notes from Editing Hell

   

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

I take great comfort in reading about other people's road to publication. It took Toni Bernard six years to write How to Be Sick (if you haven't already, join RA Guy’s book club reading Toni’s book – it’s a great way to read a terrific book). Laura Hillenbrand, author of Seabiscuit, has Chronic Fatigue 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 to finish his novel and has detailed his struggles with the never-ending edits and rewrites on his excellent blog. These stories reassure me that I am not a hopeless slacker or so incompetent that I really need to stop any thoughts of publishing a book.

In related news, going through your book over and over and over again with a fine-toothed comb, looking for What Is Wrong will very quickly convince you that you're a terrible writer and have absolutely no business whatsoever even considering publishing a book.

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

Discovering that writing is as much about editing as creating the original piece has been a real eye-opener for me. This is a point where 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 edited myself, been edited by others, but nowhere near this kind of process. Thankfully, I am not going through it alone. My Writing Buddy had the first go as I wrote chapter by chapter and then I went over all of it myself again. The next step was passing on my manuscript to Trevor, whose fact checking was invaluable and then I went over all of it myself again. As we stand now, The Boy has it and as he is giving me back chapter by chapter, I go over each two more times and then start again on each individual section. 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 read each chapter aloud to myself. It's one of the best tools I have for checking my writing. This method also checks that my sentences aren't too long - using voice recognition software has had the interesting effect of lengthening the amount of words I used within each sentence. It turns out that I blather much more when speaking then when typing. Who knew? (yes, I know - everyone who’s ever talked to me were aware of this). How do I decide whether there are too many 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 the neighborhood of 50,000 words aloud to yourself several times, it increases your lung capacity. My lungs are in better shape, but my sentences are getting longer.

I have seen different answers to the question "when do you know you're done?" One person believed that you're done when you're sick of your book, another said when your spousal equivalent is sick of hearing about 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

   

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 sit still: 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. By Wednesday, my body was so disgusted with me that it upped the ante and gave me laryngitis. Since I can't write much without using Dragon Naturally Speaking to write, this meant working wasn't possible. I sort of did anyway (tip: don't type 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. She told me to stop talking until it no longer hurts to do so. Exactly how I'm supposed to know that it no longer hurts when I'm not allowed to talk was unclear.

No talking?? Cruel, cruel fate...

  

Citrus

 

 

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

   

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

CHICAGO, Illinois (January 24, 2012) - Show Us Your Hands! is pleased to announce the new collaborative effort of three leading advocates from the autoimmune 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 and effective awareness campaigns aimed at increasing the public’s understanding of autoimmune arthritis.

Show Us Your Hands! started as a community collage project in December 2011. The interactive digital collage and commemorative poster include hundreds of photos of the hands of individuals who live with autoimmune arthritis, and represent people of all ages from around the world. This inaugural project serves not only as a symbol of the wonderfully supportive autoimmune arthritis community that continues to grow and connect online, but also acts as a reminder that people who live with these diseases should be proud of, and not ashamed of, their autoimmune arthritis hands. New photos continue to be added to this community collage on a regular basis.

Upcoming initiatives will build upon the overwhelming success of and positive community reaction to this initial project. The three members of the founding committee are currently working on establishing an organizational roadmap, and in the coming weeks will be announcing the details of the first of many upcoming projects and campaigns. “Reading through the responses to Show Us Your Hands! and viewing the photos of all the hands, I am overwhelmed by the strength of our community.  Together we have built a relationship of understanding and compassion to replace what for many has been a void.  As Show Us Your Hands! moves forward, I am excited to see that strength grow,” says founding member Cathy Kramer.

Autoimmune diseases occur when a body’s immune system mistakenly attack healthy tissue. In the case of autoimmune arthritis a person’s joints are frequently attacked, resulting in chronic pain and debilitating inflammation. The most common autoimmune 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 autoimmune 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

   

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

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

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

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

I was lucky. I had parents who had strong opinions about where their children belonged and who fought hard against the pressure from without to tuck me away in a place where I would be less difficult.

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

Difficult why? Because I needed care? Because I needed a different way to approach school, transportation and all the other things that come with a teenager’s life? Difficult because I looked different, lived differently? Difficult because my presence in the community, in society meant having 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 and out 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 be institutionalized. Because there, they had a philosophy of dealing with the children in their care. A philosophy deeply grounded in the belief of cold professionalism, of not indulging our emotions, of not responding to pain, of squelching any expression of individuality.

There,we were all dressed alike in blue track pants and red sweaters. There they ruled our lives, keeping us in the dark about medical tests and procedures. There you were expected to deal with the pain of rheumatoid arthritis quietly and without fuss. There you bit down on the pain of the needle going into your joints or suffered standing naked and alone in front of a strange man taking a picture of your body to record the progress of your disease. There you were expected to eat what was served without question or complaint. There you suffered homesickness alone and without comfort. There I 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 the grating demand to not express what I felt, to be an automaton. An antidote against 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 followed the advice of doctors, giving their children to institutions. That was the world they lived in. In that world, the rest of society wasn't made to be inclusive of different. In that world, you did what the doctor told you to do, because they knew best. Who I do blame is the medical and so-called caring professions who made those institutions places with no warmth or emotion, places more like prisons, places of abuse and brutality. Places that damaged hearts, souls and bodies, places that killed. Sometimes outright, sometimes merely murdering the chance to connect to all that makes life worthwhile living.

And then the movement to deinstitutionalize started. Was it with parents like mine who refused to believe an authority that told them they couldn'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 the right to live integrated into society. The right to receive services like attendant care that allows us to live independently and participate in our communities. Not enough attendant care and sometimes, not good enough either, but it is there. So are other services, other agencies funded and mandated to assist people with disabilities of all kinds live independently.

Because of those who came before, we are here. We work, we love, we go shopping, we laugh, we go to restaurants. Because of those who came before, we now have laws like the ADA and AODA that guarantee our continued right to be here. Laws that enshrine the obligation 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 performed She Never Knew She Never Knew..

   

International Day of Mourning and Memory

   

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.