Keisuke Iwasaki

Born in Tokyo in 1981. When he was 34 years old, he received a diagnosis of spinocerebellar degeneration (SCD). Since then, he has continued to live independently within Tokyo, all the while confronting trunk impairment and disturbed gait. In 2017, he took up the post of trustee of the All-Japan SCD and MSA Friendship Association, a group of patients with SCD and multiple system atrophy (MSA). In 2020, he was issued with an identification booklet for the physically disabled, and started work as a regular employee with a company in Tokyo, under their quota for the employment of people with disabilities. Through media appearances, talks, and articles, he is bringing his own experiences and the current state of his disease to the attention of a broad audience.

I open my eyes in the morning. In the dream that I was having until a moment earlier, I could walk, talk, and even run normally. When I rub my hip joints, there is no pain. Perhaps they have healed. But these hopes are dashed yet again. When I get up, the weight of my quadriceps muscles makes me screw up my face. I totter several times while folding up my duvet and opening the curtains. It is as if my lower body were not my own. When I say “Good morning, Alexa” to the only companion in my room, my AI speaker, my voice is hoarse. How I would love to think that my voice is rusty because it is the morning...

Spinocerebellar degeneration (SCD) is an illness which manifests itself through symptoms which accompany cerebellar atrophy, such as staggering and other motor dysfunctions, as well as articulation disorder. It is one of the intractable diseases designated under Japanese law, and is divided into sporadic and hereditary, each of which are distinct disease types. Mine is inherited from my mother.  

At 34 years old, I was playing with a soccer ball together with the girl I was dating and her nephew when I felt that something was wrong – I could not move in the usual way. Until then, I was extremely athletic, one of a group of friends who espoused active weekends filled with soccer, tennis, skiing, mountain climbing, and running full marathons.

When I told my father about the feeling that something was wrong, he encouraged me to visit a large hospital right away. At the hospital, the doctor who treated my mother quietly opened his mouth and began to speak. “I’m afraid to tell you...” The results of the MRI scan showed very slight cerebellar atrophy, of a level which other doctors would overlook. I wished that he had been able to overlook it! I had promised to marry the girl whom I was dating, and because my new workplace was expanding rapidly, there were high expectations that I would move up to the management level. Everything had been going so well that I never expected such a great fall.

One of the distinctive features of this illness is that although it is progressive, it progresses slowly. Your abilities do not decline in an extreme manner. Nevertheless, what I struggled with after this was finding a new job. Until then, I had changed workplace several times, and each time, my salary and responsibilities increased. But I went on to experience a series of defeats, enough to make all that self-respect vanish like mist. The human resources that companies want are those who have the potential for many years of activity ahead of them, or else those who can be employed under the category of “people with disabilities” in order to meet the ratio mandated by law. Since my symptoms were mild, I waited a long time to get my identification booklet for the disabled. Even though I approached well over a hundred companies, continuing to try to help myself through my own effort, it was hard for me to find one willing to take me on, with my intractable disease – neither a healthy person nor a person with disabilities.  

At that time, one of my former colleagues approached me to ask whether we could work together. When one door shuts, another opens. Simultaneously, I was invited to join in the activities of the All-Japan SCD and MSA Friendship Association patient group. Having experienced a break-up with my fiancée, my great love, it was a period when I was overwhelmed with loneliness. Being given the opportunity to work, I was able to regain my former volume of activities like a fish returned to water. I was formally appointed as a trustee of the patient group, and I am now involved with their activities in the role of deputy secretary-general. 

The passage of time is cruel. Various symptoms of my disease appear and make their progress felt slowly but surely. The most important thing is not drugs, but rehabilitation. Encouraged by the words of my companions in the Friendship Association and of my doctors, I have continued to walk 8,000 steps every single day. In 2017, I entered the full marathon category of the Tokyo marathon, and was able to complete the entire course without incident. I can still walk. I can still speak. I can cook for myself, and enjoy my meals just like anyone else. I am not yet ready to give up the motor functions that I possess.

If I mourn the things that I cannot do, or look back on fun times in the past, it only makes me sad. Taking this to the extreme, I lose hope for the future. Even if a new drug is developed a decade or so from now and my disease is cured, there are too many things that I cannot get back. I want to return to my lifestyle before I became ill. I want to build a family. I want to get my active hobbies back. However, I want to do the things that I can do now, at this moment, with all my might and without regrets.