I was born in 1997 and a couple of years later I was diagnosed with Spinal Muscular Atrophy: Type 2.
Since I can remember myself I was not able to walk, move my arms by myself, being able to eat whatever I wanted (my swallowing was weak), move my head without having to be afraid that it would fall off to the side if I wasn't careful and so on. I was somewhat capable of doing things by myself and for anything else I needed my parents would help me out. I didn't mind being stuck on a wheelchair and not have the freedom to be independent for the rest of my life as long as I was partially limited by my disability. I woke up, my mom dressed me, put me on the wheelchair and we went to school. There, I could do everything by myself or with the help of my classmates/friends.
After I finished Elementary school my disability got progressively worse. One day, I was at my grandparents' house and I got sick. I got so sick the next day I couldn't breathe. And I couldn't breathe because SMA mainly affects the lungs, and mine were so weak at that point that no matter how hard I was trying to cough, the mucus inside my lungs couldn't come out and eventually blocked my trachea. Long story short - My parents came, I passed out on the way home, we went to the hospital (which to my BAD luck was on the way going home) and I am bed-bound with a tracheotomy and a ventilator ever since. All that happened when I was 14. I am currently 23. All I am able to move now are my eyes and my right thumb which I am currently using to control my trackball mouse. That's it. My whole life and mental health depend on a computer.
I could tell you more but it's very tiresome writing with one finger. Just know that I feel EXACTLY the same as Ken in this movie. But unlike him, I will never have a girlfriend, a job that I like, or the option to die and be free of this useless body.
Since I can remember myself I was not able to walk, move my arms by myself, being able to eat whatever I wanted (my swallowing was weak), move my head without having to be afraid that it would fall off to the side if I wasn't careful and so on. I was somewhat capable of doing things by myself and for anything else I needed my parents would help me out. I didn't mind being stuck on a wheelchair and not have the freedom to be independent for the rest of my life as long as I was partially limited by my disability. I woke up, my mom dressed me, put me on the wheelchair and we went to school. There, I could do everything by myself or with the help of my classmates/friends.
After I finished Elementary school my disability got progressively worse. One day, I was at my grandparents' house and I got sick. I got so sick the next day I couldn't breathe. And I couldn't breathe because SMA mainly affects the lungs, and mine were so weak at that point that no matter how hard I was trying to cough, the mucus inside my lungs couldn't come out and eventually blocked my trachea. Long story short - My parents came, I passed out on the way home, we went to the hospital (which to my BAD luck was on the way going home) and I am bed-bound with a tracheotomy and a ventilator ever since. All that happened when I was 14. I am currently 23. All I am able to move now are my eyes and my right thumb which I am currently using to control my trackball mouse. That's it. My whole life and mental health depend on a computer.
I could tell you more but it's very tiresome writing with one finger. Just know that I feel EXACTLY the same as Ken in this movie. But unlike him, I will never have a girlfriend, a job that I like, or the option to die and be free of this useless body.