My story

In mid-2006, at the age of 29, I had a brain stem stroke. At the time, I didn’t know exactly what was going on, only that something was very wrong. I felt my ears “pop” (like when you fly on a plane, but worse) and, among other things, I had a tremendous ringing in my ears, dizziness, vertigo, one-sided weakness, etc. I went to my boss and said,  “something’s not right – call 911”. After some initial response and diagnosis, the paramedics took me to the hospital.

This was around 9am and they didn’t diagnose a stroke until 2am the next day! When my family asked if it was a stroke, the doctors said, “No, he’s too young to have a stroke”. Hindsight…

I spent 1 month in the ICU, 3 months at the Rehabilitation Institute of Chicago, 3 months at a nursing home, 1 month back at RIC and then I came home. As of now, I can’t move anything below my neck (save twitching my pinky) or speak. My recovery could be anywhere from nil to very good – and not knowing frustrates me. A doctor reviewed my 1-year post-stroke, MRI and MRA and concluded he doesn’t know what caused my stroke. Between that and my own doctor saying it will probably take a medical breakthrough for me to regain movement, I don’t know what to think anymore. It’s been, what, 12 years (as of 2018)? I have never been to a doctor or specialist who was able to help me. My parents say I will get better – that I just need to keep trying. I don’t know if I believe them anymore (I have been like this since 2006). I don’t know if I have hope anymore.

Most of my time is spent on the computer, watching movies or just giggling at the antics of the cat. I enjoy Trivial Pursuit, Scrabble and playing poker (when someone is willing to help me with my cards!). I like the outdoors, collecting coins and investing (I have an affinity for precious metals), computers/the web, movies and trivia. Before my stroke, I was a song and dance man in musicals and plays, was good at baseball, did vocal impressions of famous people, liked eating at The Olive Garden, etc.

My life is full of confusions. For example, I know that I once walked, but I don’t remember what it feels like to walk. I still haven’t reconciled why this happened to me and why a million ignoramuses are left alone. Nobody will share my outrage at the cosmic injustice of the situation. Instead, I hear “just drop it”, “it doesn’t matter” and “just learn to move forward”. Most days I feel more like a head on a stick and less like a human being.

While in the ICU, my family would hold my eyelid open,  go through each letter of the alphabet and I would look up when they got to the letter I wanted. Then, they’d start over to get the next letter. A? B? C? D? E?… etc. Quite time consuming, but at least I could communicate. I don’t even remember doing it.

Now, I prefer using a see-through board with the alphabet on it. The person using it looks at what letter I am looking at.

I can use the computer to talk for me with TTS software.

 

Or, I can use what we call “AEIOU”. Say I wanted to spell “josh”. Someone would say “a…e…i-” and I would look up to indicate it’s in the i “row”. Then they say “i…j-” and I would look up to indicate “j”. Then they start over. “a…e…i…o-” look up. “o-” look up. “a…e…i…o-” look up. “o…p…q…r…s-” look up. Etc.

I can also answer yes/no questions by nodding or shaking my head. Though I usually prefer to elaborate on my answer.