Chiari Online Support Group

Spotlight On Our Member: Stephen from BAF

There are so many fantastic people who make up the community Ben’s Friends! And every one of us has a story to tell. Periodically through Spotlight we’re going to “spotlight” a member and their story. With that in mind, meet Stephen:

To which Ben’s Friends community do you belong?
I belong to the Brain Aneurysm Support Community

Where is home for you?
I live in The Northeast, United States

Tell us a little about yourself and your family.
I grew up in New York City. I graduated from college with a degree in theater. I returned to New York after graduation and worked as a recruiter for software programmers, an office manager at a theater company, and institutional sales and options trader in finance. After the 2008 subprime mortgage crisis, I went to graduate school to get my MFA in creative writing. Subsequently, I became a teacher and was able to teach undergraduate creative writing classes while I got my degree. Later, I taught English classes in Macau (on a Fulbright Grant), Hong Kong, and middle and high school English and writing classes at an independent school in The US for students with ADHD and learning disabilities. Outside of teaching, I’ve published a lot of short stories, and my first book entitled Pavement comes out on July, 24th, 2019. My folks left New York for South Carolina a little over a decade ago, and I have a younger brother who is a doctor.

What was the first sign you remember that indicated something was wrong?
I started sweating profusely, as if I had just run a marathon, but I hadn’t been doing anything strenuous.

Tell us something about your journey to the diagnosis you have today.
I was going to visit my parents, and thankfully I was at the airport when I collapsed on the jetway as I tried to board my flight. I passed out soon afterward, and I was taken to the hospital. Everything that could have gone wrong did so. I had multiple bleeds, a blood clot, pneumonia, and Vasospasms. I was in the ICU for three weeks, and I have no memory of that experience. The first night, I got out of bed, fell, and broke my nose. I also removed the drain from my head. Eventually, I had to be restrained, and a sitter was with me 24 hours a day. However, everything which could have gone my way also did.

What has been the most difficult part of having your life touched by a rare disease or condition?
Losing the confidence I felt I had and feeling out of step. I remember things being a certain way, and now many things are different. I had been working full time as a teacher, though I had recently quit my job. My brother and his family had lived near me; Lebron James had been on The Cleveland Cavaliers (This wasn’t really a factor; I just wanted to illustrate a point). When I regained cognizance, all of those things had changed.

How has your condition changed your life?
My priorities, and perspective, with regard to what I think is important in life have changed.

How did you discover Ben’s Friends?
I had been looking for a place where I could find support and be supportive of people who had gone through similar experiences.

How has Ben’s Friends made a difference in your life?
Everyone has been extremely helpful with aspects of the recovery which had been overwhelming.

Having a rare disease isn’t funny, but do you have a disease-related story that will make people smile?
When I was lying on the jetway, I told the first responder who had been tending to me “I can’t miss my flight!” He laughed and assured me they would get me on a later flight. Of course, that would not happen, but he had made me feel more relaxed.

Do you have a cause or a hobby that is dear to your heart?
I spend the majority of my free time writing.

What is one (or two, or three) of your favourite things?
One of the aspects of my recovery which had been more frustrating, and has become mostly a nuisance now, is the effect the aneurysm had on my taste buds. Sweet foods have a metallic tang to them. After I had been released from the hospital, Ice cream, which I used to love eating, would taste like I had a mouthful of pennies. Thankfully, like some other things, it has gotten better over time. So, my favorite flavor of ice cream had been chocolate or a variation. My favorite food is pizza, and again while it still doesn’t taste exactly the way it used to, it is slowly returning. If I were to choose a main course for a celebration dinner, it would be a steak.

ABOUT MEMBER STORIES: Want to share your story or the story of a loved one? Drop an email to: modsupportazurelle@gmail.com