Stephanie Williams shares how SCA changed her life.
In the words of Charles Dickens, it was the best of times, it was the worst of times. The best of times in my life were getting my PhD from the University of Pennsylvania; moving out of my apartment on Rittenhouse Square to move into my apartment in Cambridge, MA when I was working on my post doc at Harvard; working in Chicago; getting a job as a consultant for the Urban League for Nielsen Media Research in New York; and working for Nielsen in Chicago afterwards. This was all before 2006.
Then came the worst of times when I was told that I have spinocerebellar ataxia (SCA) – a neurological disease that causes my cerebellum to shrink. The cerebellum is responsible for balance, so my walking is affected as well as my speech and my writing. I was diagnosed in 2000 and began using a walker in 2008. I then graduated to a wheelchair in 2013. The worst of times continued with the death of my mom in 2013; selling my condo in 2015; followed by living in nursing homes from 2017 until today.
There were more worst times, but I don’t want to depress myself more . You see, my parents made sure that I had a great background and that l was introduced to all kinds of people. I was pre-med at Dartmouth. I went to medical school after graduation, but I dropped out after 2 years because I went for the wrong reasons. lnstead, I got my MA and PhD in cultural sociology.
Ever since I was diagnosed with SCA, it seems like that disease has defined me. My parents have both passed and all they had was two kids, me and my brother. My parents would not like the fact that I have lived in nursing homes but my brother and his wife do not have room for me in California where they live. I wish I could afford a private nurse and CNA so that I could live by myself. Oh, I wish…