I would not say I have a “disease” – more like a chronic condition. It’s invisible, if you don’t count the involuntary writhing, the sliding off my office chair and the occasional tears. The six inch scar along my spine is almost always hidden.
The pain, which I first experienced as a youngster, was diagnosed as “growing pains.” It is a sharp, quick, stabbing sensation in my right scapula area. It feels like a bolt of lightening. It went away for a few years and returned on an irregular basis in high school. My sophomore year of college, it came back again and was truly debilitating. I could not always make it through the night or make it to class. The folks at my school’s medical clinic said I may have pulled a muscle. One morning I woke up in such desperate agony that I went to the hospital emergency room. I didn’t know what else to do or where else to turn. They gave me some extra strength Tylenol and told me to get some rest.
That summer, which I spent at my parents’ home, my family doctor prescribed an MRI (something nobody, him included, bothered doing in all those years). I had a spinal cord tumor, which would require surgery. I was able to schedule it for a bit later that summer, with a wonderful surgeon in Philadelphia. I was privileged in that my dad knew a man on the hospital’s board. I was also privileged to be covered on my parents’ healthcare plan. I don’t know how long the wait might have been if my family didn’t have a connection. I don’t know whether my surgery would have even happened had I not had insurance. Hell, I don’t know that I’d have even been diagnosed.
The tumor turned out to be benign, but the surgeons were not able to remove it all. When I returned to school I underwent radiation therapy for two months. This was fall semester 2002. Every morning I went to the hospital for treatment and returned to campus for class. Since then, my treatment has consisted of pain management and MRIs every couple of years. Right now one of my medications is a narcotic and the other is an anti-spasmodic. I have to get a written prescription for the narcotic from my doctor every month and present it in person at the pharmacy (as opposed to calling to refill). I don’t know what I will do if I lose my prescription drug coverage. I’d have no desire to live if that pain were a reliable part of my daily life.
What’s rough about chronic pain (besides, you know, the pain) is that, like I said, it is invisible. Most people expect an able-bodied young women to be able to carry a 20 lb box up a flight of stairs, but I can’t. Well, I can, but more often than not I end up in pain a few hours later. Any super strenuous activity eventually comes back to haunt me. Nothing about my appearance says “I am in pain,” so people have to take me at my word. I left work early one day last week due to pain. I know my boss knows about my back, but I still wonder whether people doubt me or suspect that I use my tumor as an excuse to get out of things.
Luckily I have more pain-free days than painful days (and by “pain” I mean nerve pain; the dull ache is constant in the background), thanks to my drugs. But I don’t know how long it will last. The body adjusts to drugs, requiring more to keep it comfortable. I already take the maximum dosage of the anti-spasmodic; there is nowhere to go from here. I hope that within the next few years (or even decades), new and better treatments are developed. I just don’t want to pump myself full of these drugs every day for the rest of my life. But I will if I have to, because preventing current pain is more important to my quality of life than worrying about the destruction of my stomach lining.