In memory of Alyssa Jeswald

In the fall of 2017, I noticed that my left toe would drag when I was running. At first I assumed it was a pinched nerve, and with some exercise and stretching I would be back to normal. I was pretty athletic and didn’t think much of it. The year went on and in early 2018 I found myself tripping and losing my balance more often when out with friends, and could no longer blame it on the few beers I had. I knew in my gut something was wrong.

It was then that I decided I should see my doctor. They referred me to a physical therapist, who after months of no improvement referred me to a neurologist. As those in the ALS community know, a battery of tests followed in order to rule out a number of neurological conditions.

On my 27th birthday I had an EMG test. My neurologist very kindly brought me a cupcake and apologized for having to do the test on my birthday. I naively thought little of the EMG, unaware of its significance in getting closer to an ALS diagnosis. Less than a month later on July 11, 2018 I was told that I had ALS, an incurable and untreatable disease.

Since then, I have learned to live with this disease and the grief of losing the life that I thought lay ahead of me. I am no longer able to move without a wheelchair, and I often use eye gaze technology to communicate. Despite the sadness of these losses, with the help of my friends and family and those in the ALS community, I have still been able to have some of my happiest days. I got married, traveled to Japan, and took a two-month road trip in a converted wheelchair van.

Every day is a struggle when you have ALS, but fighting to see the beauty beyond the pain, and the chance to help others living with this horrible disease makes life worth living.