‘You need to have a sense of humor and you need to set goals. I’m plugging along.’
“I was hiking in Hither Hills in Montauk in 2011; it’s wonderful and I highly recommend it. They call it the poor man’s Hamptons, and you can camp there for next to nothing. That day, I was bit on my arm by a brown recluse spider, and later I became partially paralyzed from the chest down. I was diagnosed with idiopathic acute transverse myelitis. My diagnosis is idiopathic, meaning they’re not exactly sure how I got it, although it did happen after the spider bite.
“I’m a fighter. I need so much baclofen, a muscle relaxant that I have a pump installed next to my appendix. I have a brace on one leg. I still have problems breathing. Transverse myelitis is akin to MS [multiple sclerosis] in that you become paralyzed; you’re not in control of your body. I didn’t become paralyzed right after the spider bite; it took a period of time. I got weaker and I was walking with leg braces, and then I thought, what’s the point?
I worked with my legislator and made June 6th Suffolk County Transverse Myelitis Awareness Day.
“Now I ambulate with the wheelchair. My mind is still there, except some people would debate that. I like to think I have a sense of humor because life is too short. Becoming paralyzed was devastating; it changed my life for the worse. I lost my job and I had to move. I bounced around from four different nursing homes, and I created havoc in all of them. Nursing homes weren’t used to something like this. It wasn’t like I had a stroke; my diagnosis just prevented me from walking. I try to get active in all the events at my nursing home.
“Before this event, I was completely healthy. One of my goals this year is to go kayaking, which I can do with my upper body. I worked with my legislator and made June 6th Suffolk County Transverse Myelitis Awareness Day. So that’s my claim to fame, and I’m proud of that. I wanted to do a walk, run and roll to raise money for transverse myelitis and other neurological conditions, but I couldn’t do it on my own. Everything happens for a reason. Like I said, you need to have a sense of humor and you need to set goals. I’m plugging along. It’s been a long time.”
Interviewed by Hannah Fusaro