Wendy Hurst was diagnosed with ataxia oculomotor apraxia 2 (AOA2) and had given up all hope of any real quality of life. But as time passed, Wendy discovered that ataxia is only a small part of her and has been living her life to the fullest.
I’m Wendy from Birmingham, England and I have (you guessed it) ataxia. Ataxia isn’t all it’s cracked up to be – not just falling all over the place and not having a clue what your extremities are doing. No, no, no…
A – able
T – to
A – achieve,
X – xtraordinary
I – in
A – action
At 8, my school nurse noticed I was walking oddly and I began a couple of years of tests, physio, and doctors looking at me and stroking their chins in confusion. I had generic spinocerebellar degeneration but I was a medical mystery beyond that. It was nice. Nobody could say I was exaggerating or making my symptoms up because no one knew anything. Over the next 15 years, everything went downhill both medically and socially, and my neurologist eventually narrowed it down to ataxia ocularmotor apraxia type 2 like my siblings. That’s fun. Luckily, the UK still has the National Health Service so that process didn’t cost me anything. I had every expectation that my life was never going to be what I’d planned and that things would only get harder – I would have demanded a refund if I had had to pay to be told that! By this time, I was almost totally reliant on my wheelchair, had helpers to do things I could no longer manage, had lost all my friends because my limitations didn’t fit with their plans, and had pretty much given up all hope of any real quality of life.
But that was then and this is now.
I’ve spent most of my adult life doing voluntary work as a youth worker, hospital staff and I am now in fitness. I’ve worked in the care sector, as an office clerk, and in a library. Busy beaver I am. Even put myself through university three times. The problem with AOA2 is that it’s very unpredictable and no two days are the same – one day might be fine and there’s only general clumsiness and then, the next, you feel like you might fall over when turning over in bed. So I always felt under pressure to make the good days really count. I‘ve raised thousands of pounds for a cancer hospice close to my heart and Ataxia UK (the UK’s ataxia charity).
It’s not just hard work though. There are adventures to be had. I got married – that was a pretty big one. A couple of years ago, I took up boxing and am now a qualified coach. So many places won’t give you the chance to try anything different but I’m not the type of person to take no for an answer. It’s improved my motor skills and gives me an outlet for the frustration most people would just walk off. 2020 gave me the opportunity to start teaching fitness classes to others with mobility concerns and it’s such a fun and rewarding thing to be having a giggle with my new friends and keeping fit. It’s a cliché but exercise really has been the best thing to manage the progress of this thing for me. I love doing my crafts, baking, writing, and learning new things. I run an online exercise class for other wheelchair users and I have a blog. My two dogs take care of me as much as I care for them. Silly things upset me like taking 20 tries to screw a soda bottle cap on or getting somebody to put my socks on for me or dropping my favorite marker and realizing I can’t pick it up. I wish I knew how to be okay with not being able to do such basic things.
My advice to anyone at the beginning of their ataxia journey would be to ignore any ideas from other people or the media and, even, medical professionals of what you should be, what you should do. There is no should. Find what you love and throw yourself into it completely. In my eyes, if people disapprove because I’m not being disabled properly, then I’m going to do it more. Ataxia is only a small part of me. However hard it tries, however bad it gets, I know I kept hold of who I am. I need to keep reminding this condition that I’m still the boss of my life and maintaining this kind of flippant attitude is the best thing to keep me from spiraling deep into the depression that haunted my 20s. Find your best thing.
We would like to give a big thanks to:
W – warm
E – enthusiastic
N – narrator
D – defeating
Y – yesterdays sorrows
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