A few years ago, I found myself in a rather pleasant situation. I was visiting Los Angeles for the first time, joined by one of my college roommates, who I haven’t seen in years, to visit a friend who moved out to California a number of years previous. We would eat, drink and be merry, (to some excess at times) and visit other friends who moved out west as well.
But thinking back, for better or worse, I had my first indication of something wrong with my body. I was completely unaware of the situation taking place, but in the morning I was informed that I was making so much noise, from what sounded like gasping for air, they almost woke me to see what was going on… then it stopped. A few days later, heartfelt goodbyes said and hugs given, I was back in a bristling cold Pittsburgh, a time when cold outside mixes with dry heat inside and plays havoc with sinuses. At least that’s what I thought.
I began again having bouts where I wasn’t gasping, but actually wasn’t breathing at night.It was what I can only imagine an asthma attack might feel like and was usually alleviated with a sip of water. A quick visit to my doctor had me thinking very much that it was sleep apnea.
But then began the smells. Acrid scents like chlorine or bleach would fill my sinuses and jolt me awake, like some sort of subconscious smelling salt. That’s when I knew I was having a seizure. Was I shaking? Hard to say. Was I gasping for air? Not just not taking any in, the reflex to gasp and attempt to breath just wasn’t there. After freaking out for what could have been seconds or minutes, I was able to focus and get out of bed, going for that glass of water. Still thinking that possibly it was so dry in the house that my tongue was getting stuck to the top of my mouth and a sip of water would loosen that up enough for me to draw breath.
But as time went on, the seizures happened more frequently and I knew something was wrong. My memory wasn’t what it once was. I had to be reminded to breath during these episodes. Luckily man’s best friend, in my case my dog Faye, would wake me at times to get me out of this state. My girlfriend at the time also helped get me through these episodes. I put off going to the doctor for the same reason many people do, to wait and see if it would go away on its own.
Unfortunately, during a subsequent seizure as I tried to get to the bathroom and get some water, I collapsed to the floor. I was taken in an ambulance to UPMC, where I would undergo surgery for a benign brain tumor known as an oligodendroglioma.
Today, I am 33 and still dealing with rapidly fluctuating emotions of anger and fear, continued doctors visits and a barrage of testing and pills. I never expected this to start when I was only 30 years old. But then I started thinking – what is I were 6?
There are support groups out there for adults, research being done and doctors and the Internet to consult for patients, plenty of whom are on disability or social security. Adults have the time and resources between treatments to try to find answers and support. Now imagine you’re a child filled with pain and confusion, possibly hooked up to equipment to monitor and engage, and their parents taking time off of work with mounting pressure from employers, bills upon bills to keep their child alive, and some with nothing but a hope and a prayer that something can be done to help their child. That’s where the Children’s Tumor Foundation comes in.
The Children’s Tumor Foundation (CTF) is the world’s largest non-government organization dedicated to ending Neurofibromatosis (NF) through research. NF is a genetic disorder that causes tumors to grow on nerves throughout the body, causing blindness, deafness, learning disabilities and severe chronic pain. Currently, there is no cure for NF and there are frighteningly few treatment options. It effects nearly one in 3,000 births in the U.S.
CTF has multiple events throughout the year to raise funds to raise awareness and research into NF. For the first time this year, CTF will host its first event in Pittsburgh. To me, it feels like something that fits right in with the spirit of giving and the spirit of frivolity that Pittsburgh is so well known for. The event is Cupid’s Undie Run, a mile(ish) run in your bedroom-best on Feb. 15. No, we’re not crazy, we’re just crazy serious about raising money for kids.
To find out more about the Children’s Tumor Foundation and this weekend’s event, check out the Cupid’s Undie Run Pittsburgh website.
