- author, Tallulah Clark
- Role, Special for BBC World
I didn’t know she was stubborn. But we are all proud, and for a long time, she won me over. My pride got the best of my physical and mental health, probably for too long.
I think I may have been lying to myself and others, because accepting that I need help is not easy.
Six years ago, I was diagnosed with a very rare neurological condition called ataxia, a term that includes a group of disorders that affect coordination, balance, and speech, with symptoms that vary depending on which type of ataxia is involved.
Since then, accepting the changes has been a challenge.
This text is not published in the “poor” style. I don’t need your pity because I already have pity. I don’t want anyone to tell me I’m an inspiration if it’s just because I live my life despite my disability.
This text is personal, but I want to share it because I’m not the only one this happens to, and I’m not the only one who has experienced the pain of slowly (sometimes suddenly) losing the ability to do things.
I am not the first to give importance to the opinions of others more than mine.
But I am one of the 1.3 billion disabled people around the world.
I don’t know how many of them have a progressive disease (I mean it gets worse over time), but I think it’s fair to assume that someone would be able to understand this and maybe find it helpful?
I really don’t know how or where to start. Perhaps you paint a picture of what it’s like to lose something most of us take for granted.
Side note: It’s weird because I’ve been told it’s part of my health, but I don’t feel unhealthy. I’m actually very healthy, I know what I’m eating (although I don’t eat right all the time), I exercise, and I only go to the hospital or doctors for routine check-ups.
It was in college when I first started using a cane. The thought of going from wearing nothing to a walking aid literally kept me up several nights.
What others thought of me was so important to me that I refused to use it for years. Just thinking that I wouldn’t be the “fun” friend was overwhelming and terrifying.
Although I’ve lost a few friends since my diagnosis, things haven’t changed much in the end.
My fears were unfounded and people were actually more supportive because they could see my disability. She was still the “fun” friend and maybe even better, because she was sharing something she was, frankly, a little embarrassed about.
It took me a while to get to what I want to tell you about. This is a trait of my personality, but I also have to admit that to get to this point in writing I haven’t stopped crying convulsively (I really recommend getting rid of pent-up trauma this way).
Over the past year my mobility has decreased dramatically, my balance is almost comical, and my coordination is pretty much non-existent.
I stumble backward when I want to move forward and keep forgetting that in order to walk I have to lift my feet instead of dragging them like a penguin.
On the worst days of my life, my vision is also greatly affected – imagine looking at your reflection in a spoon. My vision is somewhat similar to this.
I can’t think straight and sometimes I have a hard time even getting the words out (not sure if anyone is noticing, I’ve had years of practice hiding all of this). In general, brain fog is very real.
But lately, most days have been worse for me. Most days I find myself crying horribly. Most days are miserable.
So there is only one solution to ease the pain of living this way. I need to put my pride, fears, and everything else aside and start using a wheelchair.
In the end, it wasn’t hard to say. I didn’t shed a single tear.
Brake the barriers
I still can’t figure it out.
I am 25 years old, this should not happen. My hands shouldn’t have started dropping things yet. The flight of stairs should not look like Everest. You should not have joint pain.
As far as I’m concerned, I can’t help but feel relieved that after the wheelchair there are no other big decisions that would change my life. At least not now.
As far as the idea of ”How am I going to get out of my house that has a giant step in the entrance?” As I ponder in my mind, I can’t help but think of those who told me their wheelchair gave them so much freedom, of those who enjoy their lives more than I do thanks to their wheelchair.
I’ve used one before, when I broke my foot. But this time I felt safer. My leg was covered in a cast, which is a common occurrence that can happen to anyone.
Looking back, I loved those weeks, devoid of any worries or apprehensions. He had a very clear excuse for not walking. I did not feel ashamed and persecuted by stigma and taboos.
I think this will be the hardest. social barriers. Once you get past the physics, you’ll know that it’s possible. But the socially created barriers—often the least real—are the ones I’m most afraid of.
I’ve seen bus drivers get upset because it takes a little longer for a person in a wheelchair to maneuver a crowded bus. I’ve witnessed shop clerks roll their eyes when asked to reach something too high.
So if you can relate to this, I’d like nothing more than to hear some advice, or even know someone else who’s going through this… because it can be pretty lonely in a world where 84% of people don’t. They have one disability.
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