This question is the first in a list of 52 questions (Don’t worry, I may not do them all) on Rose B. Fischer’s blog. It’s part of an awareness raising campaign called Redefining Disability. I’ve mentioned my own disability a few times, I’ve seen a lot of campaigning for the raising of mental health awareness recently and I’m following the Models of Diversity campaign so I thought I’d join in Rose’s Redefining Disability project and occasionally pick a question and talk about how my own disability affects me and my life.
What is my experience of disability?
It’s been a gradual experience, to be honest. My disabilities are Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (PoTS) . I was only diagnosed about four years ago but because the EDS is genetic I’ve obviously had it all my life and I had been what I thought was a hypochondriac. Wow, was that a blessing to find out I wasn’t and all this time, I wasn’t just lazy, this tiredness was real. I wasn’t bringing on the mind numbing migraines myself, they were real. Being told I was disabled was a relief. But getting that diagnosis was difficult because EDS is a little heard of disorder. The symbol used by EDS charities for EDSers is the Zebra because at training school doctors are taught, ‘if they hear hoofbeats, think horses not zebra’s.’ In other words, think more common, not rare. But we are those zebra’s.
As I’ve got older my symptoms have got worse and more unmanageable. Before, I was a reasonably active person. I lived, I enjoyed life, I did a skydive when I was 17 or 18, I forget, I socialised with friends regularly, I dated, I got married, I continued to have a social life. I had a great job, an active job I loved. Between all of this I was getting the migraines which would lay me out of action for between 2-3 days but I coped. And besides, I didn’t have children, I could sleep in if I was tired.
Now things have changed dramatically, joints hurt, a lot. I’m fatigued beyond reason. So much so, I live my life by to-do lists and a diary, making sure I don’t have to do too much in a day and don’t schedule live, going out the house events, too close to each other. I live by my diary.
The largest joint that is giving me problems is my head/neck joint and that gives me a myriad of symptoms, wracking pain in my neck and head so that I can’t move, as well as nausea. I’m wearing a hard collar while I wait for a neurosurgeon in the States to look at a special MRI scan. It’s this that is controlling what I do mostly because it is this that gives me the most problems. Unbelievable body slamming pain.
My experience? Other than the diary needing to be used to plan my life, is that I carry with me a huge sense of loss. Of having my life ripped out of my arms. physically and forcibly. Completely against my will. I hate this damn collar. I’m locked in this green plastic cage and yet I couldn’t bear to take it off because of the pain I’d be in without it. I even sleep in it at bad times because at those times I find I’m asleep on my stomach with my head completely twisted to the side and I’m surprised to find I’m in agony the next day!
My experience of disability is loss. Huge unbearable loss. My career is in tatters, my social life non-existent, I feel useless. Yes, I have to keep going. I have no other choice. My mind is still alive and well and active (if somewhat sluggish at times). It’s why writing is so important to me. I’m being stripped down piece by piece and I have to try and build something new from the ground up.
Can you imagine having to do that? Do you do that? How do you cope?
We shouldn’t shy away from disability or its effects. I hope my honesty doesn’t make you squirm or make you want to leave the blog. It was a hard post to write, but this is the person behind the book and all future books! Let’s buck the trend of ignoring what makes us uncomfortable and just take ten minutes to acknowledge it from time to time.