Learning to Be Okay with Medical Trauma

Friends, a new orthotics consultant referred to my feet as “a deformity” today. Several times. It almost feels like I could just finish the post with this one sentence, hey? Still, I am determined to work through the ugliness of my deepest insecurities here, in a space that continually proves itself to be safe. Let’s start at the beginning, shall we?

The pivotal point in my lack of dedication towards exercise and embracing my disability enough to manage it properly came when I was approximately thirteen. I was beginning to prepare for the possibility of having an operation on my hip, so when my surgeon asked about some background information, I mentioned that I regularly used a stander at home. “What for? Torture? It’s not going to make any difference whatsoever” was his reply, which is something that I have never forgotten. Initially, I was genuinely thrilled by his professional certainty, I’m not going to lie. I mean, it was boring and sometimes painful, so I was willing to accept any excuse not to put myself through that. Pretty quickly, I decided to stop with all of the things that disabled children are supposed to do, including physiotherapy. I couldn’t understand why I should bother taking care of myself in ways that only exaggerated my sense of otherness, if it was ultimately not going to improve my health, you know? For a long time, this approach felt like a Good Thing. If I could function without relying upon these extras, then I was somehow less disabled and therefore living life more fully than anyone had otherwise expected. Little did I know that it would instead take me a whole decade to begin addressing this as internalised ableism.

Aside from the turmoil that I’m going through as I type this: so far, I am having the best year of my life. I am really, truly starting to get my shit together. When I read back through older posts, it’s so clear from my writing, too. For that, I am endlessly proud of myself. However, I have been getting increasingly anxious that this self-improvement has arrived too late, leaving my health set to follow a downwards trajectory from here, no matter what I do. I had been trying to focus on how irrational these thoughts sounded, until today, when I heard: “some of this deformity could have been prevented if you’d had intervention sooner”. Genuine question: what am I supposed to do with that information? It’s not like I can reverse any of the choices that led me here, which means that I just feel guilty about it instead. Fun.

A picture of Danielle with her brother, Jack, from when they were small children. They are in a twin buggy, both wearing sunglasses and blue hats. Danielle is wearing a green jumper with white leggings. Jack is wearing a white top with black stripes and black trousers.
Just a disabled child and her brother wearing funky clothes in the 90s for your enjoyment.

Even before this happened, it’s an issue that I discuss with my physiotherapist often. I suppose that she has become something of a regular therapist, too. But I do get frustrated with my younger self and it’s not always easy to move forward from. When I was growing up as a visibly disabled child, the sense of exposure felt almost violent. I wasn’t represented anywhere by the people that I knew or the environments that I found myself in. I wanted nothing more than to exist quietly and fit into the groups that had always eluded me. Back then, just making it through to the end of every day was difficult enough for my brain to handle, without trying to simultaneously contemplate what my adulthood might look like. Let’s be real: I am living that now and I still don’t have many of the answers.

Since this experience still feels vulnerable on my heart, I’m not entirely sure how to conclude. There is one thing that I’m absolutely certain of, though: the disabled community is not defined by our experiences with shitty medical professionals. In particular, right now, the treatment of Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome) needs to be radically overhauled without any further delays. Exercising is harmful when your body is not physically capable or prepared for it — and it turns out that symptoms don’t just magically disappear when you talk about them in therapy. Shocker. Sign the petition for change here.

Owen, you have changed my whole life in the most beautiful way. Thank-you for making it all worthwhile. I love you so much and will never allow you to forget how magical you are. xxx

3 thoughts on “Learning to Be Okay with Medical Trauma

  1. In that picture, I see two adorable little beans. I mean, adorable! I want to kiss your little baby fists! Adorable! I will say that even you brother was cute – then. We’ll give him a pass.

    I can totally relate to these phrases we get thrown at us, and these ideas we internalize, like if only we could function perfectly and exercise perfectly, then we would be perfect. Sometimes I think athletes are the aliens. They are really going to struggle and be lost at sea when it’s their turn to break down. We are just going to sit back and say, see? SEE? We warned you. It’s total crap. Your mind is intact but you can’t get your hand to move a certain way, or your hip is about 30 years prematurely arthritic, and there’s nothing you can do about it. I mean, you can whine, but no one wants to listen to that, athletes. Remember your training.

    As far as beating yourself up goes, well, I can’t tell you how many times I’ve gained weight and lost it. I always think to myself that I should have been smarter the time before and not gained it back. But I do. So now I have to do all this work so I don’t look as big as a house. Maybe when I’m doing my (seated) kickboxing videos I will think of my neurologist who called me fat. I am, but I get to say so. It’s my body. And hey, your body is your body. Think about how you refer to your parts. Just as the care providers teach you, you get to teach them as well. Teach them how to refer to you. Sock it to them!

    Like

    1. First of all, the opening line of this comment made me laugh out loud and I sent Owen a screenshot immediately. I appreciate you SO much. Really. You are a light.

      Thank-you so much for validating my experiences and sharing understanding. I have been working really hard not to internalise any of the negativity and you captured everything so perfectly. Last time I was able to focus my brain enough to read, I picked up Sitting Pretty by Rebekah Taussig. She introduced me to so many revolutionary ideas, namely that disability is not a failure of our own bodies to function, rather an inevitability that we will all face at one time or another. Even if it doesn’t happen until old age, it will happen to some degree. It’s oddly reassuring to me. With that, it’s wild that non-disabled people don’t care or are unwilling to get educated about these things (even medical professionals), as if the rules don’t apply to them.

      You are so right with what you said about making my own rules for how my body is referred to. Thank-you. It’s an empowering statement. PS: please send me some kickboxing videos, when you get chance! I’m trying to be better about exercising outside of sessions. Sending love and light to you 🤍✨

      Liked by 1 person

      1. Thank you, now I have added Rebekah’s book to my wish list! And I am going to gather up a few videos for you. As far as our bodies go, I find I am constantly adjusting. I can’t be sad anymore, even though sometimes I look at my hands and they remind me of pony’s hooves. I can still bake and cook and type ridiculous messages! So what if yoga is out? Who needs downward dog anyway? But seriously, we do what we can, when we can. That’s all it comes down to. Sending love and light right back!

        Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s