Monday, May 31, 2010

Random May

Access is everywhere or rather, should be everywhere, but at many faith-based gatherings, people with disabilities tend to be shunted off somewhere or we're trotted out and healed for the entertainment of the masses. Except, sometimes you see something that really makes you happy. Way to show leadership.


Amazing photos from a German festival celebrating Gothic romanticism, a UK broadcaster invents a new form of English, a plea for a return of yesteryear that I can heartily get behind and what the international media learned about Toronto in preparation for the G20. If you’ve ever been tempted to go to open houses to see how it people decorate their homes, here’s the website for you.


You all know how I feel about That Song. And now, thanks to Brass and Ivory, I've found All the Wrinkled Ladies, which is awesome and so apropos of my May 12 post. And while we are celebrating how real women look, check out this article about the first Pink Tartan store to open in Toronto. No, actually more specifically, check out the link to the designer, the pictures of their most recent collection and I couldn’t even focus on the clothes, all I could see where the legs of the models. Matchsticks. Complete matchsticks. How underweight do you have to be for you legs look like that and why is that held up as beautiful?


Recent research shows that mice have the same kind of pain faces as people do, which should have interesting and far reaching implications in research. There is no segue for this, but Rob Salem from the Toronto Store writes about a movie that’s so bad it’s good. And you know how we all think it’s a good idea to practice gratitude? Someone decided to creat a blog around that concept. An entirely wonderful blog that’s a fantastic way to start your day (this is one of my favourite entries so far).


Ken linked to this piece on race and white privilege phrased in a way where you cannot help but see things in a slightly different light. Carrie was on a bit of an archaeology kick, posting links to articles aboutrecent Egyptian sites, one on 57 ancient tombs and the other one on the underwater excavation of Cleopatra’s palace. Carrie also found this post then updated the traditional (ineffectual and quite stupid) pain scale.


From Trevor, the best wedding invite ever and another brilliant ramp. Also, information about Victorian body snatching (haven’t you always wondered?), the cruelty of children, a truly awesome shirt that I wish they made in adult sizes, a visit to a crystal cave that will blow your mind and the line of the year.


David sent me the wonderful article about how the Republicans got introduced to the Internet and staying with the media, a headline that probably made everyone’s day at the New Scientist (probably only NSFW if you work in a religious order), this one made my day – haven’t even read the article, just keep going back to the photo and a note from the Queen on the use of English. In Greece, they’re so committed to political activism and protest that even the dogs get into it, how you know your mom doesn't love you best and a really interesting article about speech recognition software. Lastly, two brilliant videos: first, sadly relevant what with BP’s catastrophe in the Gulf (have you seen the live video?), the front fell off, a satirical take on a tanker disaster and a sublime bit of very clever silly to end the month and start your week.



Friday, May 28, 2010

Finding Peace in the Oddest Places

I was at the dentist the other day getting a small cavity fixed and as I’m reclined in the (surprisingly comfy) chair, the draining thingy hooked on the left side of my mouth, gurgling quietly while my dentist and his assistants both have various other implements - some of them making that shrill whining noise - stuck in my mouth, I realized how relaxed I was.


I used to be afraid of the dentist, which happens when you were a child in the 60s and early 70s. I don’t know if it’s a Danish thing or the state of dentistry at the time in general, but I remember an attempted root canal turned into drilling out bits of a molar when I was around 12. Without anesthetic. It kind of sets you up for later anxiety.


When we came to Canada in the early 80s, we all became patients at my dad’s dentist and she was wonderful. I very quickly came to enjoy going to the office – all the staff were women and there was a lot of chatting and laughing, and over the years, the pleasant atmosphere weaned me off the nerves. What helped even more was when I decided to stop getting numbed up before the drilling started – it made my dentist really nervous and she’d move much faster. I was nowhere as relaxed as my mother was at the time. She used to fall asleep. I used to think she was crazy.


I still don’t get freezing – I don’t see the point. Unless the dentist is enthusiastically excavating around the nerve, at most what you’re looking at is a minute’s worth of pain and you can usually breathe through that. Contrast that with several hours’ worth of drooling, numbness and inability to eat and for me, it’s a no-brainer. Of course, if I’m getting a tooth yanked or another major type of job, I do opt for the freezing. Not that this seems to make much of a difference.


And somehow, I’ve now reached a point where I find the whole thing incredibly relaxing. It’s almost a treat. The chair is comfortable, I’m away from the phone and the computer, which means no one can reach me for up to a whole hour and the lamp that helps the dentist see what’s going on it tends to hurt the eyes, so I always close them. The gurgling, shrill whining and soft click of instruments as they’re being passed from assistance to dentist and back again serve as a sort of white noise and before you know it, I’m in an almost meditative state where I’m not thinking of anything, not worrying about my to do list, not writing something in my head for later use, I’m just there in the moment. Every now and again if my dentist hits a sore spot, I’ll do a bit of deep breathing to ride it through and before you know it, I’m back in the white space. And when I leave, I feel invigorated and well rested.


My 12-year-old self would think I’m crazy.


Thursday, May 27, 2010

Precautionary Nervous Breakdowns

This week on MyRACentral, I write about scaring yourself to stay safe:

"It was December 27 and I was waiting to hear if I had skin cancer."


You can read the rest
here.

Monday, May 24, 2010

Great Lovers

Abelard and Heloise. Antony and Cleopatra. Tristan and Iseult. Cyrano and Roxane.


Victoria and Albert. Wait… am I the only one who heard that screeching brakes sound of a needle scratching on a record?


Whether historical or fictional, lists of the great lovers of our world don't include Queen Victoria and Prince Albert. I certainly wouldn't have not been and I’ve been wondering about why that is. Today is Victoria Day here in Canada, so I’m going to wonder out loud.


As may be glaringly obvious, I've just watched The Young Victoria, a movie about her life just prior to becoming queen and ending shortly after her marriage to Albert - a very good movie with wonderful costume and set design. Not only is it a story about the politics of the age, of the stumbles and missteps she made while trying to discover how to be Queen, it is also the story of two people meant to be together, not by Fate in a romantic sense, but by the machinations of family members who had a long-term plan to grasp more power by arranging a marriage between Albert and Victoria. And then, unexpectedly, the two fell in love. Mad, passionate, lasting love, finding the perfect partner in each other and together, escaping out from under those family members who tried to control them.


When we think of Queen Victoria, we think of the old Queen, the dumpy, elderly and likely quite cranky woman. We don't think of a young woman, bursting with enthusiasm, a desire for independence and, it appears, joy. Well, the joy seemed to come when Albert came into her life and once they were married, they lived in connubial bliss for 20 years, having 9 children. And it was clear that they had a mutual passion for each other - Albert would watch her six (!) ladies undress her every night, transfixed by the beauty of her white shoulders. and in him, she found someone with whom she could be a woman first, have a family life, someone to be her partner. I've never before thought of how valuable that could be.


I've been reading some of her letters and discovered that at the time, when engaging in correspondence with the Queen, politicians (and the like) would refer to themselves in her in the third person, as would she. What would it do to a person to have to separate/elevate yourself to that extent and that thoroughly? She could use first person when writing for family, but there weren't very many with whom she could be herself in her immediate environment. Can you imagine the loneliness? And can you imagine the blessed relief of being with someone with whom you can be completely yourself, someone who will speak to you as an equal, someone who will look at you with love? Everyone around her wanted something, constantly positioning themselves in such a way that they could try to get what they wanted, but Albert just wanted to be with her. Just look at them - they look lost in each other.


And it was when I thought of it this way that I realized the depth of grief she must have felt after he died. Not only did she lose the love of her life, but she lost the one person with whom she would be herself. As she wrote in a letter to the King of the Belgium on December 20, 1861


" But oh! to be cut off in the prime of life—to see our pure, happy, quiet, domestic life, which alone enabled me to bear my much disliked position, cut off at forty-two—when I had hoped with such instinctive certainty that God never would part us, and would let us grow old together."


She grieved him for the next 40 years, laying out his clothes every night, wearing only black and naming untold buildings after him, as if it would somehow keep the connection between them alive. I cannot imagine what it must've been like to be her, for the next 40 years to never be less than Queen and - perhaps with the exception of the time she spent with John Brown - never again allowed to be just a woman.


So why are Victoria and Albert not on the lists of great lovers? Is it because our image of Queen Victoria tends to be of the older woman, dumpy and plain by our estimation (I think she in middle age and up was more what they used to call 'a handsome woman')? I looked up images from her youth and she was quite the hottie (see also here). Is it that we judge her grief – 4 decades long – to be excessive and therefore ridiculous? Is it simply that not enough time has passed and that in another century or two, their love story and her pining for him for the rest of her long life will become the stuff of fairy tales and they will take their rightful place in the list of great lovers?


What do you think?



Wednesday, May 19, 2010

Rules of the Game

I can’t stand bitter juries.


Survivor: Heroes vs. Villains has just crowned a winner - Sandra, again, literally wearing a bit of a crown (love her!) - and it was yet another example of people voting against someone rather than voting for the best player. And I wanted to reach through the TV screen and throttle and number of them.


We all expect Rupert to be sanctimonious - was there ever another player who smoked his own dope to quite this extent? - but I'd expected better from the rest of them. You can sort of understand why people who haven't played the game before occasionally get lost in the emotions, but when you have some version of All-Stars, they're generally people who know and respect the game and therefore respect being outplayed. Not this time around.


It was one of the best, if not the best, season of Survivor I've seen - I have seen all of them and am not ashamed to admit it. Incredible high levels of gameplay (so many of them), incredible valleys of disappointment (Colby), incredibly stupid moves (Tyson voting himself off, JT giving the idol to Russell based on nothing but a feeling), egos being left to make strategic moves instead of brains (Russell decimating his own alliance prematurely, Villains voting off Boston Rob before the merge, Heroes voting off Stephanie) and I could go on, but more than anything, the season belonged to Parvati. If everyone plans to vote you off before the show even starts and you make it to the end, there’s some serious gameplay going on. She made a brilliant alliance with Russell and watching the two of them run the game and acting like a sort of married couple, complete with bickering, jockeying for position and total loyalty was a treat. And watching Parvati run Russell was a treat - her statement that the final Tribal Council that she "didn't slay the dragon, she kept him as a pet" had me howling. She was terrific at the social aspect, she's tied for second in overall winner of individual challenges, she strategized brilliantly and she should have won.


And yet, despite being outwitted, outlasted and outplayed, the jury gave the title and the million dollars to Sandra. Who had her own strategy, was a hoot to watch, effortlessly manipulated Russell on a couple of occasions, won no one immunity challenge - in fact, if they gave out immunity for coming in last, she'd have won all of them - but basically got to the end by doing whatever everybody else wanted. Nothing wrong with that, as such, but I think it only really qualifies as "outlast", not outwit or outplay. She was very definitely the weakest in the final three - and don't get me started on how much I hate the concept of a final three instead of two - and then, instead of asking legitimate questions to aid in making a decision, the majority of the jury took the opportunity to stand in front of the finalists and pontificate sanctimoniously at them.


Your job as a jury is to find out who played the best game, not to come into the final Tribal Council not only with your mind already made up, but also basing the decison only on having your fweeeeelings hurt. You got booted off! These players are better than you - and yes, Sandra and making it to the end despite playing in a way that was characterized by an avoidance of making moves does mean that she deserves to be there - and that means that you need to get off your high horse and actually do your job. Everyone used the rules of the game, winners and losers both, so (wo)man up and get over yourself, y;know?


It is entirely possible that I get a little too invested in reality shows (see my post on doing your best), but seriously. The fact that Coach - one of the (inadvertently) funniest and most ridiculous people ever to play the game - has a better attitude about being a jury member then most of the rest of them is insane. If you respect the game - and as All-Stars, all of these people respect and love the game - you have to respect it up until the bitter end, even if it means voting for somebody you don't like if they were the best player.



Monday, May 17, 2010

Good Causes

I watched The Blind Side last week and it made me think a great deal about the idea of doing more than just talking about what we can do to make the world a better place. Not all of us have the resources to actually take someone into our homes and make that deep a commitment to changing one individual's life, but there are other ways of making changes...


There times when everything comes together and the last few weeks have seen a sort of perfect storm of good causes that need good people coming to my attention. Today, I'm sharing them, not with the intention of pressuring you to donate, but to make you aware of them and if the spirit moves you….


Yesterday, I went to a fundraiser for the Stephen Lewis Foundation in the neighborhood.



The guest speaker was Marilyn McHarg, General Director of MSF Canada, who spoke about the work she'd done with MSF and about the millions and millions of children living in sub-Saharan Africa who have been orphaned by AIDS and who are now being raised by grandmothers. She spoke about "helping without discrimination" and given our current government's efforts to cut off funding for aid groups that provide access to abortion - family planning appears likely to be next - it's a concept that greatly needs to be discussed more. Help should be given because it's the right thing to do, not come with strings. Ms. McHarg’s speech was incredibly inspiring and made me want to chuck everything and go work in the field, but the places that need that kind of work don't tend to be terribly accessible, so the best thing I can do for them is to give the money and pass the word. Check out the Grandmothers to Grandmothers program.


Ken is doing the Ride for Life for the Toronto People with AIDS Foundation again this July and this time, he and Megan are riding a tandem bike. This year, the ride hits closer to home than ever before - a dear friend of mine is losing the fight after living with HIV for decades. She lives elsewhere, so Ken's efforts do not benefit her directly, but here in Toronto, other people's friends are very much in need of what PWA Toronto offers. If Ken and Megan are taking a week out of their life to ride from Toronto to Montréal, the least I can do is donate and let people know about it.


A couple of weeks ago, I got a letter from something called The Companion Animal Wellness Foundation. I had no idea what it was about, but as I was reading, I started crying. The CAWF is a new Toronto-based not-for-profit foundation that provides financial help to economically disadvantaged pet owners whose animals need emergency and specialty veterinary care. I got the letter because the Veterinary Emergency Clinic who tried so hard to help my Mojo fight her cancer had made a donation in her memory to the CAWF - I was so touched by the continuing caring shown by this clinic. I had a credit card that enabled me to get her specialty care during her illness, so I know only a little of what it means when a beloved pet needs care and you don't have the money. I'll be signing up to make a small monthly donation in the hope that it may help someone else in the same situation not have to put their pet to sleep because the tests cost too much.

Thursday, May 13, 2010

Staying Sane

Sanity and the preservation thereof is the topic of this week's post on MyRACentral:

"Waking up in pain. Going to bed in pain. Never knowing if tomorrow's going to be the day it comes back with such force that your life is shattered, sidelined again while you put everything on hold, while you find a treatment that works. Hoping you'll find a treatment that works, having waking nightmares in which you don't. No longer remembering the time Before, back when your body was your own. Fighting, always fighting, to live, to get better, to not lose function, to find hope, somehow
. Living with rheumatoid arthritis is living with a relentless assault, not just on your body, but on your mind, as well. Sometimes, your biggest challenge is to not give in, to stay focused, to stay sane."

You can read the rest
here.

Wednesday, May 12, 2010

Definition in Opposition

There was another thing that struck me in the New York Times’ Patient Voices feature. What struck me was George’s story, in particular the part where he talks about practicing doing certain things over and over again in order to "appear normal". It struck another of those tender places, because what do you do when you can't? How do you get a positive sense of body image when nothing about you is normal?


Last time I looked close to what constitutes normal I was probably around 11 - there were some signs of the RA, mostly in my hands, but I could pass. Since then, in the other 36 years of my life, I've been Different. And no matter what the people who love me say, women with disabilities are most definitely not considered beautiful. When I interviewed Louisa Summerfield and asked about the models on her website, she said "[s]ome people have written to me complaining that I don't have genuine disabled girls because all of them look so hot, they are shocked when I tell them all are in a chair except for the lingerie model." I did not have time then to ask why not the lingerie model, but will skip over that today, because the point is that women with disabilities cannot be hot.


I've written before about that knife’s edge of objectification and how, as a woman with a disability, it can feel quite nice to be ogled for a change. Because although men who have disabilities may be allowed the idea of being attractive and even sexual, women are not. I was a teenage girl in a wheelchair without role models of sexual identity and positive body image, I was a young adult and then a somewhat older adult woman and still, the only women I saw using wheelchairs were in disease-of-the-week movies (where they usually died bravely), in the odd commercial for home care and none of that felt anything like me.


I used to say I was a brain in a jar, because my brain, my personality was all anyone ever wanted. I used to hate my body because it was Different, because the world around me never showed women like me, except as a tragic plot point and when you cannot “appear normal” and when the world defines beauty as everything that isn’t you, what does that do to your ability to see yourself in a positive light?


Every now and again, the media up here talks about the lack of an identifiable Canadian identity, how we tend to identify ourselves as Not-American (I’m pretty sure that’s not altogether true). The same can be said for women with disabilities, who must find a way to identify themselves while existing in opposition to the norm, largely invisible, entirely asexual and definitely never beautiful. I can't remember the last time I saw a positive image of an attractive disabled woman in any form or media, except for Louisa Summerfield's website. We are, in the brilliant words of Holly Norris, photographer of Jes Sachse in the American Able exhibit, "invisibilized" and denied the right to sexuality, to such a point that a disabled woman posing in photos that would be considered sexy had the model been ablebodied and conformed to the mainstream idea of beauty. Instead, people have talked about their "shock value".


I used to hate my body. For its lack of everything that means something in this world of ours - ability, dexterity, strength, sexiness, grace, symmetry. And because it had never been, could never be Same, would always be Different, I shut it out, ignored it, pretended it wasn't there, identified myself solely by my personality and intelligence, became the brain in a jar.


Last week, some of you told me I am beautiful. It was really good for my ego and wonderful to hear and here's the thing… I know. Not every day - I bet even Angelina Jolie has low self-esteem days - but yes, I know. Which is pretty much the single most un-Danish and un-Canadian thing I've ever said and I'm more than a little surprised that the universe didn't just implode with a giant thwump.


Before I could see myself as someone who could be beautiful, I had to get old enough to realize that wrinkles, stretch marks and emotional strength are what make you beautiful and I had to almost lose everything, be razed down to the ground before I figured it out. Life experiences, being there, getting through is what matters, not flawless skin, a flat stomach or the ability to move gracefully. That it is what is different - even Different - that brings true beauty and perhaps it is embracing it, rather than seeing it as not-something that can finally bring peace, acceptance and maybe, as a bonus, mess around with the accepted norm of what constitutes beauty.


Last week, Laurie posted about her search for a swimsuit and how it brought her up against the struggle to accept her body the way it is after her mastectomy. She doesn't like wearing a prosthesis and I can only begin to imagine the courage it takes to go about the world without one. Or posting a picture of yourself in your new swimsuit on the Internet. But I think she is beautiful, because her body shows signs of having been through hell and living anyway. In posting about her Differentness, she's finding a way to define herself not in opposition to the norm, but as herself, living anyway and doing so in joy.


Like Laurie, I’ve struggled – still am, whenever I’m not gazing at my incredible beauty in the mirror, y’know – with finding a solid sense of myself uninformed by the norms and stereotypes around me. And I’m getting there. In these past five years, I have come to see my scars, the marks of RA on my joints as badges of honour, signs that I have lived through something hard, proof that I kept going. I look at my body and I see the imperfections, the Different, but now I see a body that works so hard supporting me to live, to grow, to feel, a body that shows up, gets through and allows me to live the life I love so much. And because of this, I'm grateful to my body and that gratitude has helped me shatter the jar, integrate my brain and my body as one and finally see myself as beautiful. Not despite my physical differences, but because of them.


And because of women like Laurie and Jes, maybe someday, girls and women who are different will feel beautiful from the get-go.



Thursday, May 06, 2010

Spots

Every year, I'm convinced it's at the end of May, which means that I've sometimes missed it. This year, it was dumb luck that I checked on the weekend and all of a sudden realized that holy crap, my blogiversary is Thursday!


I had plans for it. There are going to be some neat things going on, but now I'll just have to mutter something about me maybe getting my act together by the end of the month to make some changes around here. But maybe that's a good thing, because today really isn't about the blog, as such, it's about you.


Friends got me started on the blogging thing five years ago and I jumped in without really knowing what I was going to do with it, instead figuring it out as I went along. It was going to be a place where I got into the discipline of writing, but I very soon came up with that idea about emotional honesty. The blog was "born" just five months after starting Enbrel, it was the first year of the rest of my life, I had just been given a second chance, not yet quite comprehending what it meant, but I knew that I was about to build my life and myself from the ground up.


And then something happened. Something completely delightful, unexpected and something which has improved my life immeasurably: people started leaving comments. Not just friends and family, but people I'd never heard of before.


Some of you have been with me since the beginning, some came later, some have moved on, but what all of you have in common is that you have been with me on this journey back to life, my companions on this ride of a second chance, being there while I figured out what it looked like, helping me shape a new adventure. You have laughed with me, offered me comfort and support during the times where things went sideways and backwards again, made me think more deeply and celebrated with me when life when forward it to a place I had never in my wildest dreams imagined it could go.


My biggest regret is that my writing/typing ability is so limited that I can’t email with all of you more, can only read your blogs, rarely leaving comments. It is a credit to these friendships we've managed to develop that you don't leave, but come back again and again, even though you have to imagine part of the conversation. Somehow you know that I think of you often and you forgive and stay present, manage to receive – psychically? - all the things I want to say, but can't. I am so grateful to you for sticking around, for the relationships we have, even though you mostly hear from me through the blog.


I once read a quote that said people are friends in spots. In my last post, I wrote about the RA spot and what it meant for me to find a place with others who live there. But there are other spots, spots I didn't even know I had and only found through knowing all of you. Some of you share the chronic illness spot, some the sarcasm, others are found in the part of me that love reality shows and yet others in writing, in the second chance, in knitting )I don’t knit anymore, but once a knitter….) and in so many, many more. I share my life and my spots with each of you in different ways and I am so very lucky.


Because here, in this space with you, I am known.



Tuesday, May 04, 2010

Like Me

In November of last year, the New York Times featured people with rheumatoid arthritis in their Patient Voices area. At the time, it took me a couple of days to finish it and I knew I wanted to post something about it, but obviously, it's taken me a while. It feels like time, even though I've been trying to write this post for two days without getting past the title. Or maybe especially because it's something I’ve spent a lot of energy avoiding. When I started this blog five years ago, I promised myself - out loud and in public- it was going to be a place of emotional honesty, so here we go, jumping in the deep end…


The RA version of Patient Voices profiles six people and there is a very interesting juxtaposition of what happens to a child who gets RA now and one who got it 40 years ago - the contrast between Ari and Alyson says it all. And it was seeing Alyson and Jennifer, two women who both got RA when they were eight years old and who now, when in their 40s, have varying degrees of ability, but are still walking that did it. Because what surprised me the most about this feature was how difficult it was for me it was to see two women who, like me, got RA when they were children, and who, unlike me, are still walking.


I thought I was OK with it. I last walked when I was 14, have no muscle memory of what it's like, get around fine, have a satisfying life, moved on, accepted it, doing other things and yet... there it was. Still is, these six months later, when I listened to their stories again this weekend, this tearing rip of sorrow deep within. It's like a lick of flame, blue with cold regrets. There is an old sadness there when I listen to Jennifer, married with two children and I wonder what if… might that have been my life in some parallel universe? It is the why me revisited, yet again. That journey of if only… that pops up not just when the damn disease gets obstreperous again, but prompted by things like an article in the newspaper, unexpected, knocking you for a loop.


I don't know anyone like me. When I was a kid, I was pretty much the poster child for how bad it could get - I think I only ever met one girl whose body was as destroyed as mine. At the time, my parents were the ones who supported other parents - they knew more than others, because of how bad JRA had hit me. At first, it was mild, more or less, I had only two joints affected and then I hit 12 and puberty and it spread like wildfire to every joint, went systemic and almost killed me. When I had both hips replaced at 16, it wasn't so I could walk again, like Alyson or Jennifer in the New York Times, it was so I could stop lying in a hospital bed, be able to sit up, use a power chair and go home and have a life.


When I did go home, I left illness and hospital behind, never wanting to see them again and that also meant anything and anyone associated with JRA. Which was pretty easy since Denmark is a small country and there weren't very many of us, certainly none that lived close to where we were. And then there's the fact that you when you become friends with people, you do so because you have more than one thing in common and just because you have RA doesn't mean you'll like each other – it can be a bridge, that initial connection, but ultimately, it’s what inside that matters, not what you look like. Right?


Except it turns out that it does matter. Because no one looked like me. Well, if you line up my mother, my sister and I, it's obvious we’re related, but I didn’t know –still don’t know - anyone who physically bore the mark of RA like I do. My joints are deformed and fused, my right foot turns in, my right knee only bends a little, my left knee not at all, I only have a waist on the right side, because I have scoliosis in my lower back and the way I sit has exacerbated it over the years. My hands look like this



and for a very long time, I minded terribly. Especially when I looked at my sister's hands, long, straight and elegant fingers and know that mine would have looked like that if only. I am 5'1" on a good day because when I was 13 and the RA almost killed me, the only thing that saved me was prednisone, but it also stopped my growth. Instead of being tall and willowy like my sister, I look like a Romanian gymnast of the 70s and 80s (except without the agility and strength). My arms are foreshortened, my shoulders are narrow and the RA fused my neck partially, as well, so I have to turn my body to see to the side and as for seeing up, that's mostly done by moving my eyes. Many of my joints have collapsed, including to an extent my jaw, so it’s withdrawn towards my neck more than it should be, classic for people who had JRA before there were treatments. All my joints are fused partially or completely and it means that I move sort of like a bird - in tiny, jerky movements.


I didn't think it mattered, have stuck with the way I felt inside - where I move as gracefully as a dancer - and just got on with things. And then last fall, when I talked to a woman on MyRACentral who mentioned what it felt like to meet someone that looked like her and directed me to Arthritis Introspective where I found a picture of Wendy Hawkins (scroll down). Who looks like me. Down to the color of her hair (as well as the style – I used to have that haircut), the characteristic JRA chin, the narrow shoulders and the posture, where you can tell that she, too, looks to the side by moving her body, not her head. And when I saw that picture, the sense of not being alone, not being an outsider, not being different washed over me in crashing wave of relief and I cried.


It's not that I think I'm ugly - I don't, not anymore. But I am different, I don't conform to our culture’s ideas of what is "normal" - much of me is a twisted (quite literally) version of what other people look like. And it wasn't until last fall, when I saw a photo of Wendy Hawkins that I realized how much of an outsider I felt because of it. Not due to the expectations of society, but simply, purely, because in my life, I am the only one who looks like this.


These days, my work with MyRACentral has allowed me to return to a community of others like me. They likely don’t look like me – because if you get RA now, it’s highly unlikely it’ll damage you the way the disease did me – and it doesn’t matter. Because we have this other thing in common, the knowledge of what it feels like to live inside RA and much to the surprise of the remnants of my younger self that still live inside of me, sometimes, that’s all that matters.


There, I don’t feel like an outsider. There, I feel known.