I recently read the story about Dan Gilbert and his stroke and it hit close to home for me on many levels. While I may not be a billionaire, I’ve been walking through the stormy weather as a brain injury survivor for 20 years. Many of the challenges Dan Gilbert now has due to his stroke, I also deal with. The post symptoms I live with every day due to my brain injury are left side paralysis, double vision, headaches and moments of dizziness. It’s been 20 years since my AVM and I still have my struggles.
I was 14 when the brain bleed happened. It was a normal Friday until I got a headache and my left side began feeling tingly like it was falling asleep. After a trip to the local doctor, I later found myself in the back of an ambulance and vomiting with the driver turning on the sirens to get me to the hospital as quickly as possible. The ambulance driver asked my mom if that was my father following behind in the screaming ambulance?
The driver said he can’t do that and that was the last thing I remember before going unconscious for the next 6 months. I don’t remember the doctors telling my parents to call all family and religious clergy because I may not make it through the night. I don’t remember all the friends and family visiting me and supporting me. I don’t remember Steve Yzerman coming to see me and giving me the jersey he wore in the Stanley Cup.
After surviving and going through physical, occupational and speech therapy I was finally able to return to start over my freshman year of high school. It was challenging but I made it through the school year and was feeling confident and ready to take on the sophomore year. It may not come as a surprise that when you go through something as traumatic as a brain injury you often feel like it could happen again. Especially when your left side goes tingly for a moment and you’re unsure when the numbness will go away, which it usually does, except the numbness increases and you have a headache realize you’re having a brain injury again.
Almost 1 year after my first brain injury I had another one due to complications from the first. I remember sitting in the office at school when it began happening and thinking, are you kidding me?
Unfortunately, it wasn’t a joke and the numbness was only getting worse along with my right eye unable to open and a bad headache. My parent’s set up a time for me to get the first MRI available which was at Henry Ford Detroit hospital. I still remember sitting in the waiting room of the hospital and saying to my mom, please don’t be sad if I die.
Death seemed likely especially after we got the MRI results from the neurosurgeon following my scan. I still remember feeling the chill of that sterile hospital room as we waited for the doctor to deliver us the results. My parents were loving and comforting me and I can’t remember if I were hopeful or beaten down. I think it was the latter but that all changed once the doctor walked in and set the mood for us all. Looking back, even though I was a teenage boy I wish someone would have given me a teddy bear to hold before hearing the news the doctor was about to deliver.
In walks, the neurosurgeon with the MRI results and I can’t remember all he said. The only thing I remember is him mentioning there was nothing he could do making it seem like I was hopeless and hopeless is how I felt. I was young, vulnerable and just wanted to live a normal life. No young boy ever expects to be hospital ridden and fighting for their life but here I was, unsure if I was going to live and be there with my younger brother. Unsure if I’d be able to grow up to be a man and live a long life. Unsure if I was going to live.
After we got the unfortunate results from the neurosurgeon my parents went into superhero mode and we drove home to Clarkston to pack our bags for Akron, OH. Akron is where my original neurosurgeon relocated so we took a road trip. Akron ended up being quick because my neurosurgeon said there was nothing he could do although he referred us to a surgeon in Buffalo, NY to try an experimental laser surgery. Buffalo was an experience in its own and not the best time and place for someone who is suffering a brain injury.
When we arrived to Buffalo after our visit to Akron, the city was a mess. It was Sunday or game-day for the Buffalo Bills and the streets, hotels, and restaurants were filled with football fans pre-game partying for the New York Giants versus the Buffalo Bills game. I just remember getting lunch with my parents in a crowded restaurant and finding the last hotel room available in the city. Eventually, we got to the hospital where they tried the laser surgery and it failed. After this, I was feeling once again hopeless and ready for death. I was ready to die and death didn’t sound all that bad considering I could barely walk, talk or eat. I needed to catch a break and luckily that break was coming.
The last stop of our road trip was to the University of Michigan hospital in Ann Arbor where we met with Dr. Gregory Thompson who told my parents the surgery was high risk but he can do it. Dr. Thompson is the same surgeon who performed Kelly Stafford’s brain surgery. Sorry, Kelly, I had him first.
I remember being shocked by how many people came to support me before the surgery. So much to a point, I was getting tired of having visitors. Only people who have been sick and held up in a hospital would understand that. I didn’t know some of the people who visited me even liked or cared about me that much but humans have a knack for supporting people they love.
My younger brother gave me a teddy bear which I held during the surgery and Dr. Thompson put bandages around the teddy bear’s head just like mine after the 9-hour surgery. Luckily, I survived and haven’t had any complications, since, knock on wood.
Although, you don’t hear about brain injuries a lot they happen more often than you think. I’ve come to discover there is an entire community of brain injury survivors going through the same things that Dan Gilbert and I go through such as paralysis, headaches, dizziness, vision and balance problems.
All of this led me to create Brain Talk. Brain Talk is a website and resource with stories that brain injury survivors can connect with. www.braintalkmedia.com