He is 25 years old, lives with ataxia and spoke about the difficult experience of the disease: “I find it difficult to pronounce the words.”

Tallulah Clark ataxia, a condition that results in an inability to coordinate muscle movements and may be caused by disease or damage to the cerebellum. In the text she wrote below, the 25-year-old shared what it means to her to live with disability and how he transitioned into his new life after receiving the diagnosis.

I didn’t know she was stubborn. But we all have pride, and it won me over a long time ago. My pride took precedence over my physical and mental health, perhaps for too long. I think maybe I was lying to myself and others because admitting that I need help is not easy.

Six years ago I was diagnosed neurological condition very rare call ataxiaa term that covers a group of disorders affecting coordination, balance, and speech, with symptoms that vary depending on the type of disorder. ataxia concerned. Since then, accepting change has become a problem.

This text is not a “poor me” post. I don’t need your pity because I already have mine. I don’t want anyone to tell me that I inspire if it’s only because I live my life in spite of myself. disability. This is a personal text, but I want to share it because I’m not the only one with this, and I’m not the only one who has gone through the agony of a slow (sometimes sudden) loss of the ability to do something.

He is 25 years old, lives with ataxia and spoke about his difficult experience with this disease.Courtesy of the BBC

I’m not the first to give other people’s opinions more weight than my own. But I’m one of 1.3 billion people with disability World. I don’t know how many of them have an advanced 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?

I really don’t know how or where to start. Perhaps painting a picture of what it’s like to lose something that most of us take for granted. Note: This is weird because I’m told it’s part of my health but I don’t feel unwell. In fact, I am in very good health, I know what I eat (although I don’t always eat right), I exercise, and I only go to the hospital or doctors for routine checkups.

It was in college when I started using a cane. The thought of switching from wearing clothing to assisted walking literally kept me awake for several nights. What others thought of me mattered so much to me that I refused to use it for years. The very thought that I would no longer be a “fun” friend was overwhelming and frightening. Although I have lost a few friends since I was diagnosed, in the end nothing much has changed.

Ataxia is a condition that affects the cerebellum.Getty

My fears were unfounded and in fact people supported me more because they saw my disability. She was still a “fun” friend, and maybe even better, because she shared something that, frankly, she was a little embarrassed about.

It took me a while to get to what I want to tell you. This is a trait of my personality, but I also have to confess that in order to get to this point in writing, I did not stop crying convulsively (I highly recommend getting rid of the repressed trauma in this way).

Over the past year, my mobility has decreased significantly, my balance has become almost ridiculous, and my coordination is almost non-existent. I stumble when I want to move forward, and I keep forgetting that I have to lift my legs to walk, not drag them around like a penguin. On the worst days, my eyesight also suffers greatly – imagine looking at your reflection in a spoon. My vision is something like this.

I can’t think straight and sometimes It’s hard for me to even say the words (I’m not sure if anyone noticed, I’ve had years to practice disguising all of this.) All in all, brain fog is quite real. But lately most of my days are the worst. Most days I find myself crying ugly. Most days are miserable.

So there is really only one solution to ease the pain of such a life. I need to put aside my pride and worries and everything else and start using a wheelchair. After all, it wasn’t that hard to tell.

I didn’t shed a single tear. Destruction of barriers. I still can’t understand. I am 25 years old, this should not be. My hands shouldn’t start dropping things yet. A flight of stairs shouldn’t feel like Everest. You shouldn’t have joint pain.

Before deciding on a wheelchair, the girl walked with a caneCourtesy of the BBC

No matter how much I worry I can’t help but feel relieved because after the wheelchair, there are no other important decisions that will change my life. At least not now. As much as the thought of “how am I going to get out of my house with a giant step at the entrance?” round in my head, I can’t help but think of those who told me that their wheelchair gave them more freedom, in those who enjoy their lives much more than I do thanks to their wheelchair.

I used it before when I broke my leg. But this time I felt more secure. My leg was in a cast, a common thing that could happen to anyone. Looking back, I loved those weeks free from worries and fears. He had a very obvious excuse why he didn’t go. I didn’t feel ashamed or persecuted because of the stigma and taboo. I think this will be the most difficult. social barriers. Once you get past the physics, you will realize that it is possible. But I fear the barriers created by society – often less tangible.

I have seen bus drivers annoyed that it takes a little longer for a person in a wheelchair to maneuver on a crowded bus. I have witnessed store clerks roll their eyes when asked to retrieve an item that is too tall.

So if you can relate to this, I would like to hear some advice or even meet someone else who is going through this… Because it can be quite lonely to live in a world where 84% of people do not have a disability.

*Tallulah Clarke*

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