2023-08-21 09:25:30
image copyrightTallulah Clark
Caption,
Tallulah started noticing that something wasn’t quite right when she was about 14 years old.
Article informationAuthor, Tallulah Clark Role, Special for BBC Mundo
3 hours
I didn’t know she was stubborn. But we all have pride, and for a long time, mine won out on me. My pride got the best of my physical and mental health, probably for too long.
I think maybe I have been lying to myself and to 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 encompasses a group of disorders that affect coordination, balance and speech, with symptoms that vary depending on the type of ataxia involved.
Since then, accepting the changes has been a challenge.
This text is not a “poor me” style post. I don’t need your pity because I already have mine. I don’t want anyone to tell me I’m inspiring if it’s just because I’m living my life despite my disability.
This text is personal, but I want to share it because I’m not the only one this is happening to, nor am I the only one who has gone through the anguish of slowly (sometimes suddenly) losing the ability to do things.
Nor am I the first to give more importance to the opinions of others than to mine.
But I am one of the 1.3 billion people with a disability around the world.
I don’t know how many of them have a progressive disease (by that I mean it gets worse over time), but I think it’s fair to assume that someone will be able to understand this and maybe even find it useful?
image copyrightTallulah Clark
Caption,
Tallulah uses a cane to get around the city.
I really don’t know how or where to start. Perhaps painting a picture of what it’s like to lose something most of us take for granted.
Side note: It’s weird because I’m told it’s part of my health, but I don’t feel unhealthy myself. I’m actually in very good health, I’m aware of what I eat (although it’s not like I eat right all the time), I exercise, and I only go to the hospital or doctors for routine checkups.
a new chapter
It was in college when I started using a cane. The thought of going from wearing nothing to a walking aid literally kept me up for several nights.
What others would think of me mattered so much to me that I refused to use it for years. The very thought that I would no longer be the “fun” friend was overwhelming and terrifying.
Although I’ve lost a few friends since my diagnosis, things didn’t change much in the end.
My fears had been unfounded and people were actually more supportive because they could see my disability. She was still the “fun” friend and maybe even a better one, because she was sharing something that she was, frankly, a little embarrassed about.
It has taken 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 confess that to get to this point in writing I have not stopped crying convulsively (I really recommend getting rid of repressed trauma in this way).
image copyrightTallulah Clark
Caption,
One of the things that Tallulah enjoys is traveling, both within the UK and abroad.
Over the past year my mobility has decreased significantly, my balance is almost comical, and my coordination is pretty much non-existent.
I stumble backwards when I want to move forward and I keep forgetting that I need to lift my feet to walk, instead of dragging them like a penguin.
On my worst days, my vision is also greatly affected – imagine looking at your reflection in a spoon. My vision is more or less like this.
I can’t think straight and sometimes I have a hard time even getting the words out (I’m not sure if anyone notices, I’ve had years to practice masking all of this). In general, brain fog is very real.
But lately, most days are my worst. Most days I find myself crying ugly. Most days are miserable.
So there really is only one solution to ease the pain of living this way. I need to put my pride, worries and everything else aside and start using a wheelchair.
In the end it wasn’t that hard to say. I did not shed a single tear.
Breaking barriers
I still can’t figure it out.
I’m 25 years old, this shouldn’t be happening. My hands shouldn’t start dropping things yet. A flight of stairs shouldn’t feel like Everest. You shouldn’t have joint pain.
image copyrightTallulah Clark
Caption,
“Over the past year my mobility has decreased significantly,” Tallulah says.
As much as I worry, I can’t help but feel relieved that after the wheelchair there are no other big decisions that will change my life. At least not for now.
As much as the thought of “how am I going to get out of my house that has a giant step at the entrance?” As I went through my mind, I can’t help but think of those who have told me that their wheelchair has given them great freedom, of those who are enjoying their lives much more than I am thanks to their wheelchair.
I’ve used one before, when I broke my foot. But this time I felt safer. My leg was in a cast, a common thing that could happen to anyone.
Looking back, I loved those weeks, free from any anxiety or apprehension. He had a very obvious excuse for why he wasn’t walking. I did not feel ashamed and persecuted by stigma and taboo.
I think that will be the hardest. The social barriers. Once you get past the physics, you know it’s possible. But the socially constructed barriers—often less tangible—are the ones I fear.
I have seen bus drivers get annoyed that it takes a little longer for a person in a wheelchair to maneuver a crowded bus. I have witnessed store clerks roll their eyes when asked to reach for an object that is too high.
So if you can relate to this, I would like nothing more than to hear some advice, or even to know someone else who is going through this… Because it can be pretty lonely living in a world where 84% of people don’t have one. disability.
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