I have been sick most of my life. I'm 38 yrs. old now and spent two decades seriously ill. That means I've practically lived in and out of hospitals and emergency room from age 8 until I was 28. I've lost so much of myself during my whole brain tumor diagnosis and the aftermath of all my treatments that I have no idea who I am or what makes me happy.
I went from being a lover of gymnastics to a girl who couldn't walk properly. My balance never really got better. I think I've just learned it isn't natural. But that's what I get.
From the " no handed cartwheel queen" to the useless left hand guinea pig. The physicians checked my hearing & followed up with me enough to make me feel like they were playing some strange game. Like chess. What's the next move?
Radiation followed. The six weeks living in Manhattan were fun, courtesy of my mom. She took me to every tourist attraction and gave me many hugs when I wasn't well and when my hair started falling out. I wore my wig with a bow around it, Madonna-style.
Treatment was done by age 13. Now I had to wait for my hair to grow back and to not think about falling down the school stairways. I never did. I changes schools for high school and students didn't know about my brain tumor. I felt I needed to explain my bad balance, etc. but, no one really cared anyway. No one noticed; I don't think.
Year 14 was an awesome one. I started to smile again. My hair was back and I was adjusting to my new life.
Age 16 started off fantastic. Mom and I moved and my mom had a super-duper slumber party for me. She always has the best parties for me.
The worst day of my life was when I punched my face at 2 AM in 1989 to end this horrific pain that woke me up, diagnosed as trigeminal neuralgia. Pain wasn't respected in 1989 and no one wanted to treat a child in pain. Plus the internet wasn't around. I was in agony all day and night. I was scared to breathe, scared to move, etc.
Somehow the pain didn't kill me from the hundred or so medications that I was given. It was OK to dope me up, make me convulse, or pee in my pants because they weren't"narcotics". Their conscience ( the physicians) was clean. They didn't do anything wrong except give me crap that didn't work.
My pain wasn't managed from age 16-28 years old. That's the time of the prom, SATs, decisions about college, college degrees, continuing education, first jobs after college, etc.
That's how my life moved forward. But it was also two unsuccessful surgical procedures, one damaged my cornea permanently (my vision), and we took many trips all over the USA to the best physicians.
I am now under treatment for my pain. Dr. Kevin T. Sperber saved my life. Someday I would have died from the medications I was given, that didn't work anyway. But Dr. Sperber looked at me like a person. He wanted to know which of the pain medications that I was given worked best.
I think I became a person that day. Not some sick person, some drug addict, etc.
Dr. Sperber is such a humble man. He has no understanding of what my life was like in pain. I tried living as normally as I could. In college, my life revolved around my pain. What friends would take me to the ER? I was in a sorority but couldn't drink because my pain would worsen. My mom took me to the ER weekly when I lived at home. I have no idea how she was a single mom, worked full-time, and took me to the ER weekly. She is my hero.
My life is finally the best it's been. I have a beautiful home, have a job, am making connections in the brain tumor world, etc. Things are good, not full-filling but, OK.
I spent so much time admitted into hospitals, waiting to find a pain specialist, waiting for the correct treatment, waiting for medication to be out of my system, etc. I know that I did some normal activities. I have friends, went on vacation, etc. But everything really revolved around my tumor.
I used to love talking on the phone, polishing my nails, making collages, etc. I had enthusiasm for life. And now I feel like I'm thrust into the adult world with no transition time. I'm on disability and therefore can only make a limited about of money. But maybe I could work full-time in the right field? Or maybe I should go back to school? But for what? My only passion is educating about benign brain tumors and representing chronically ill children (like me).
I just miss my enthusiasm. It will come back. But now would be nice. I'm lost. And I tried reaching out to The Innocence Project, a non-profit that helps people falsely imprisoned get back on their feet. I want to connect with their Social Workers to help me. I connect with those survivors. It wasn't their fault and they suffered. Now they have to deal with the loss of time, missing family events, financial issues, etc. I guess I'll move on without them.