Cassandra Davis is an articulate 32-year-old with her own Internet blog. She also is non-verbal and a partial quadriplegic, the result of a massive brain stem stroke that occurred when she was 28. Davis has resided at Lakeview Specialty Hospital and Rehab in Waterford since February 2013.
Davis has partial use of all four limbs and communicates via an iPad with a stylus. Due to the nature of Davis’ challenges, she was interviewed through email correspondence. To preserve the nature of the conversation, her story appears in question-and-answer form.
Where were you born and where did you grow up?
I was born in Aurora, Ill. I lived there from age 3 to 9 before we moved to help my grandma at her country house in Walworth.
What is your educational background?
I went to Big Foot High School in Walworth, class of 2000. I was in accelerated and gifted classes since the second grade.
How did your current condition come about?
I was a perfectly healthy, normal 20-something up until I had a massive brain stem stroke. I found out I was born with abnormally narrow arteries, so the blood clot would have passed through unnoticed in anyone else.
How old were you when this happened?
I was 28. It was three weeks before my 29th birthday. I had been at SummerFest the night before, crashed at a friend’s house in Milwaukee and had been rushing to get to work on time. It happened as I was pulling out of my driveway. I was misdiagnosed at (a local walk-in clinic) and (the hospital emergency room in Walworth County) marked me as “nonemergency” so I waited four hours at St. Luke’s for my MRI. As a result, I wasn’t able to get any treatment to break up the clot.
Is it unusual for someone your age to have this occur?
Oh yeah. That’s why I was misdiagnosed. Who looks at a healthy 28-year-old and thinks “stroke”?
What sort of rehabilitation did you undergo?
Extensive rehab. I couldn’t move at all in the first weeks following the stroke. I could blink. I had a stomach tube put in after three days because I couldn’t swallow. I didn’t eat food with my mouth for like a month-and-a-half. Even then it had to be the consistency of baby food. Liquids took much longer but I was determined to drink coffee again!
It was a glorious day when I was finally cleared for thin liquids. Never got the speaking back because my soft palate doesn’t work right.
At first I communicated via letter board. Someone would have to point to each letter, individually, and I’d blink when they got to the right one. I’d spell words that way. Then my best friend, Art, rigged up this laser-pointer headband thing, so I could point straight at letters instead of going through the alphabet. Faster, but still tedious. When my grandpa bought me this iPad it was like I was free!
What inspired you to write a blog?
There are a lot of reasons, I guess. It’s my outlet. I can vent; I can wonder; I can (hopefully) inspire. It’s a way for me to connect with people. I’m a little short on connections these days.
I’ve also found that if I’m sharing publicly it helps me look at things honestly. It’s like, I go back to proof and I can see when I’m not being honest with myself.
I am also a person who needs to believe that everything we go through has a purpose. I’m not religious, but I am spiritual. If my journey helps somebody else, this won’t be for nothing. Since I have NO idea what another person might find helpful, I just share whatever comes to mind.
It’s probably a bit of my ego, too. I think my thoughts matter. I can’t speak; this allows me an opportunity to share. Being truly silenced is something I
want to experience again. We
our opinions, and unless we can express them they might as well not exist. Unless we can express ourselves,
might as well not exist!
Then there are practical reasons, like the chronological documentation of my mental status. Some people have a hard time accepting that my disabilities are limited to the physical. Writing passes the time too — a girl can only play
much online poker.
Finally, I’ve raised $11,000 and I plan on trying the stem cell (adult, not embryonic) treatment to regrow damaged brain tissue as soon as the results are a tad more consistent. I’ve been following the research closely for about two years now and it’s exciting. I want to document my experience, whatever it is, so other people have a way to be like, “Oh, so that’s what I can expect!” I’ve only ever seen the “after,” I’ve never seen “before” or “during recovery” for stem cells in stroke patients.
My blog will be where I share my experience, one day. Hopefully soon.
Have you gotten feedback from blog readers?
Nobody has contacted me directly, but I like to think there’s a lot of silent support out there. Since I write for me, not approval, I don’t obsess, but it’s nice to be encouraged. When I do start recovering I’m optimistic about the feedback increasing though.
What would you like people to know or understand about you?
Mainly that I’m not a child and I’m not mentally impaired. I’m still 100 percent me; I’m just stuck inside a body that doesn’t work.
Also, stare if you must but don’t feel sorry for me. I understand that my life may seem unbearable to some people but when you look at where I was immediately following the stroke, you might understand how grateful I am to be able to do the things I can do — how hard I worked to get to THIS point. I don’t see how much LESS I can do compared to other people, I see how much MORE I can do compared to totally quadriplegic me. Kids are great with that. They might stare because I’m different, but they never treat me as less, just different.
To view Davis’ blog, visit: www. stuckinsidemyself.wordpress.com.