If there was one thing I never imagined when I was 16 and planning my final years of high school in order to pursue a career in law, it would be that I would be disabled while doing so. When I was diagnosed at age 21, I didn’t stop to think about how it would affect me long term outside of a medical context. And for a while, I could pretend it didn’t. At least until, the wheels fell off.
There’s a lot floating around on the Internet about the importance of self-advocacy, and I see a lot about what that can look like, but not so much about what to do when everything goes wrong. I answer: What is your biggest regret? What is a common miscommunication? What is a recent success?
Like most people, 2020 was a bit of a write-off for me. I had so much on my plate that something had to give , and unfortunately it was this.... I don’t want to go into too much detail, because I want Chronically Clumsy to be a constructive and motivating corner of the internet, but I do think it’s important to discuss what happened so I can share what I learned.
(without going insane!)
The one thing in my life, which has always been constant, is dance. I've spoken on here before about my love of dance, how with each new goal achieved I was clawing back my pride in myself and my body. The question I'm asked all the time, by my family, friends, coworkers and other dancers is why, with my health the way it is, do I keep dancing?
I'm so excited to finally be able to share something I've always been wanting to do - the launch of Chronically Clumsy merch.
Personal accountability, and the pathology behind why CI contributors post what they do, is a topic that is either delicately skirted around, or quickly devolves into an emotionally-charged flurry of comments in someone else's post.
My life will forever be changed by Ehlers-Danlos Syndrome and its sister diseases. I will never be able to go back to life the way it was a year ago, and I had to mourn that life. I had to face the reality that I may never dance again, that I would have to put work on hold, and defer my university studies. I had to confront my fears that maybe this was psychosomatic, that I really just had Munchausen's and was somehow making myself sick on purpose. But I had to stop grieving, because I needed to fight for just a little longer.
I like to have my own little way of conceptualising the spoon theory, because some tasks take much more out of me than others, but I am usually able to complete roughly the same number of little tasks per day. For me, I visualise this in the form of teaspoons and tablespoons. On a normal day, I probably have about 4 tablespoons, and about 6 teaspoons.
A bit of a ramble about my rheumatology appointment, how to be a good doctor, and how to be a good patient.