In today’s society, most people don’t think much of walking, or being able to write and speak. It has become so common for us to be able to do these simple things that we don’t understand what would happen if we suddenly lost those abilities. But what would you say if you were diagnosed with Spinocerebellar Ataxia?
Spinocerebellar Ataxia is a progressive and degenerative disease. It is a rare inherited neurological disorder of the central nervous system characterized by the slow degeneration of certain areas of the brain. Spino refers to the spinal cord and cerebellar refers to the cerebellum or back part of the brain. The cerebellum is the area of the brain that controls coordination. This disease malfunctions human’s motor function and eventually makes them paralytic.
Though it is can be different for each person, SCA normally starts out with walking. The person affected with this disease will often stagger, lose balance and fall. Gradually they will need a cane, a walker and eventually a wheelchair as they will completely lose the ability to walk. Speech will become impaired: words may be pronounced slower and sounds will be harder to produce. Like walking, the person affected will lose the ability to speak. It goes the same for writing: handwriting will become sloppier and eventually using your fingers for fine motor actions becomes impossible. In a sense you can think of it as your body is slowly deteriorating by losing your abilities one by one.
While there is treatment to control only the symptoms, there is no cure for this irreversible and cruel disease.
One of the most profound cases of SCA was found in a 15-year-old Japanese girl named Aya Kito. Aya had just been accepted into the best high school in Japan and was looking forward to graduating. Two good friends were by her side in class and the basketball club. Gradually she started to lose her balance and fall more often. Because she was unbalanced she usually fell head first and then body. After a nasty fall that brought her to the hospital, her mother insisted on a check up, which lead to the initial diagnosis. “Why did it chose me?” was one of the first things she had asked after she found out.
She started to have trouble estimating the distance of objects around her. While doing an exercise with the doctor, using her finger to touch her nose and then his finger, she had a difficult time and often missed her targets. She could no longer hold chopsticks and her writing became sloppier and bigger as she gradually lost strength in her hands. She lost strength in her legs and eventually could not stand or walk on her own.
While going through these problems, she never once gave up. She persisted in rehabilitation and insisted on living in the hospital so she could attend rehab more often. Though she was slow in walking, she walked whenever she could, relishing her last moments on her feet.
She started to speak slower and had trouble pronouncing words. Some of her sounds came out as breaths and she eventually lost the ability and needed to use a word chart to communicate. Choking had become a regular worry as it can be fatal since muscles do not respond properly.
After only living for ten years with her disease, Aya’s life ended at the age of 25. Because of SCA she could not get married, and had often asked her mother if it was a possibility. Even when she had people constantly helping her, she dreamed of choosing a career path that would help people, but never made it to a university. Even though her disease had taken her abilities one by one, she never once gave in and persevered to live as long as she could.
“1 Liter no Namida” is Aya’s diary that was published on February 25, 1986, shortly before her death on May 23, 1988. In 2004, ‘A Liter of Tears,’ the movie was produced and in 2005, Fuji Television produced the television drama 1 Liter of Tears.’
Even though Aya did not live long, she lived her life as full as she could, and for that I respect her. While I watched the drama, I cried until my head pounded. She fought her disease with a courage and determination that I have never seen in anyone else before. It really is sad that the good die young.
Excerpt from Aya’s Diary:
If I were a flower, then now I would be a bud
I shall treasure the beginning of my youth without any regrets.
This disease, why did it choose me? Fate, It can’t be put into words.
I want to make a time machine and go back in time.
If it wasn’t for this disease, not only I could enjoy falling in love
but I also wouldn’t have to rely on anyone and live by myself.
I really don’t want to say things such as ‘I want to go back to how things were before,
I recognize how I am right now, and I will continue to live on.
Therefore I definitely won’t run away. That’s what I’ll do.
Definitely, always.Even if it’s like that, I still want to stay here
because this is the place where I am.
If you look up at the sky after falling down the blue sky is also today
stretching limitless and smiles at me…I’m alive.
People shouldn’t dwell on the past.
It’s enough to try your best in all that you’re doing now,
Reality is too cruel, too brutal.I don’t even have the right to dream
As i think about the future, the tears will come out again.”