Last week I got an official diagnosis of thoracic outlet syndrome (TOS) from a physiotherapist specialising in shoulder therapy. I liked her, she came across as being that rare sort of fiercely intelligent person who is dedicated to truly understanding what they do. Her questions were thoughtful and relevant, and her explanations were frank and thorough. Quickly she came to a diagnosis and explained to me that my shoulders are hyper-mobile, therefore they sit in the wrong place, not in their sockets the way they should be. This combined with my, in her words “big head, big boobs and crappy little shoulder muscles” made me predisposed to this condition.
She told me I can blame my parents for this because this is their genetic legacy. She told me that my body was not made to be an artist and handle the kind of repetitive motions and load-bearing that art and computer work require. She told me if I ever have kids that I should encourage them to join the circus and become contortionists.
On the one hand, it made me incredibly sad to hear; my art is my passion and it is a sick, dark joke on behalf of the universe to give me this body that does not suit this temperament. But I walked out of that appointment feeling lighter than I have in years and I’ve spent this week feeling overjoyed.
Don’t get me wrong, there is a long, long road ahead of me of intense physiotherapy that is going to require real discipline and I probably won’t start seeing tangible results for at least a year. There is not a cure for my condition and surgery is not a useful option for my type of TOS. My life isn’t about to become easy, in fact I have a hard slog ahead of me and while the specialist was very optimistic that I could be helped, she couldn’t make promises. I respected that about her, I’ve come to distrust any medical professional who offers miracles.
Also, while I will never give up my art because this is my passion, my identity, my great love… I may never be able to pursue it with the intensity and dedication that I want to. I may always have to drip feed myself. That hurts but it’s also an idea I’ve been coming to terms with for some time now. In fact, last year during the worst times of pain, I thought perhaps I had lost my art completely and that was devastating. So while I am somewhat acclimatised to the idea of never being able to truly throw myself into my biggest dreams, it still does break my heart.
But this has done something huge for me. Now I know exactly why none of the doctors, osteopaths, physiotherapists, hand therapists, sports physiologists, Alexander technique instructors, yoga instructors, clinical Pilates instructors, etc etc, could not help me. Every single one of them was giving me advice, exercises and stretches that would not help my condition and in fact would exacerbate it. I always suspected that there was something off about the advice I was getting and I had to abandon so many options but every time I did, it made me feel as if I was a quitter, like I wasn’t trying hard enough.
But I was trying hard, it’s just that I was trusting my body when it told me the thing I was doing was wrong for it. As it turns out, I was completely right. The specialist told me that I couldn’t have done those exercises they gave me because of the complex structural issues stemming from the way my body is built leading to my RSI and TOS. One day those exercises will be good for me but not for a long time, not until we’ve completely retrained my body and muscles how to work. Strengthening is a long way off yet and it’s weird because nowadays I lust after the gym, I fantasise about someday being able to sit down in a rowing machine and… use it.
Now that I have this diagnosis, it’s like a giant piece of the puzzle has fallen into place and it’s just explained so much. For the last (almost) five years I haven’t been able to shake the feeling that this is my fault, but I can’t blame myself for my genes, I can’t berate myself for the body I was born into. If I had spent a year working out and strengthening my back muscles before I started painting when I was 14, perhaps I could have avoided this but otherwise this was… inevitable. This was written into my DNA. Five years ago, I would not have been overjoyed to be officially told that I have a disability but now I am just so happy to finally understand what’s going on with my body.
As for the length of time it has taken to get a diagnosis, well, in part that is due to the great surfeit of misinformation and disagreement regarding RSI that seems to permeate most every corner of the medical community. It’s due to people not listening, it’s due to doctors not caring. But, ultimately, thoracic outlet syndrome is somewhat rare and not very well understood and the symptoms can so easily be mistaken as coming from all sorts of other causes. Thanks to the internet and the wonders of Google, I was lucky enough to find a specialist with what seems to be a very thorough understanding of the structural underpinnings of my condition, but it took five years of hunting, reading, pursuing many dead ends, having several diagnoses that never quite seemed to fit, spending more money than I can bear to think about, and more emotional and physical anguish than I care to currently dwell on.
But this diagnosis… the more I look into it and learn about it, the more right it feels. It helps explain so much. I have felt trapped for so long, my body has felt like a monstrous, malevolent mystery. Now it’s simply a machine with faulty parts; faulty parts I can understand and perhaps learn to work with. And mercifully, I am finally truly letting go of the burden of blaming myself. I feel lighter than I have in a very long time. A weight has lifted; this is not my fault. This is nobody’s fault. This just is.
This is not a cure but I’d long given up on that idea. This is something more precious, this is hope that is more tangible and believable than I’ve had in a very long time. Though I expect there to be many setbacks, I’m just so overwhelmed with joy at the prospect of finally moving into the future. I’m nervous that this could turn out to be another dead end but this just feels different. I think this might be different. I feel tentative. I feel happy. I feel terrified of being happy and getting disappointed.
Is that a flicker I see at the end of the tunnel? Instead of my body being absolutely wasted by the time I am 40 as I have been so afraid of, might I actually be relatively capable? Might I be able to cobble together some sort of life for myself that more closely resembles my dreams? Might I be able to ride bikes? Carry bags? Paint every day for an hour or two? High five with impunity? Or even just sleep a whole night through without my body seizing up?
Oh God. I’m so happy. I’m so scared to be happy. I’m so relieved. So relieved.