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
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.