Education can get you plenty of places. Denial has become my friend. I enjoy research. It is something that I was intrinsically good at from an early age. There were not many kids my age living around my bayou childhood home. Not any that I could play with. I was thin and frail. I was no good at any sport I attempted. Football, baseball, softball, volleyball, basketball, and the list goes on. Friends tried to help me. They gave up.
I could research for hours on the day. Books didn’t give up on the reader. The reader gave up on them. Of all the research I came upon, never was there anything about “breaking the gene.” I could find out about a lot of things, but the one thing that could set me on my path proved elusive again. The genetics test proved that even the highest of all tests could be inconclusive. I have a genetic break which is undocumented. The scientists don’t know if my genetic failures “break the gene” causing illness. This crazy illness keeps going on. I can’t even get a straight answer as to what is causing my pain. The closest reasoning is that there are multiple things going on. We were hoping the genetics results would pave the way to a resolution. What I found is the limits of science. We still don’t know.
Nine hundred thirty-eight different tests were performed and I failed them all except a few. And then, I didn’t fail them that well. If a genetic test cannot point the finger at my flaws, then how is a doctor supposed to ever identify what is going on?
My muscles have returned to being high on the spasticity rating. My pain level hasn’t fallen below 4 for months now. Occasionally, I arrive at 10 or above. I dread those. I’ve learned I’ve got a raving case of PTSD. With the help of old coworkers, I have been able to remember the specific incident when things went awry. I live in that moment. Memories of events cascade. They have no mercy on me. There are so many things that I would go back and work to change if I had a time machine, I wouldn’t even know how to start. I was an observer of events that caused many deaths. At the time of this writing, I can’t put down on paper what needs to be said. Partly, because of restrictions placed on my speech. Other reasons include being overly distraught at their recall. I don’t want to remember them. The cascade is terrifying.
Genetics failed. Where do we go from here? Do we even keep trying? What are the penalties for wanting to live my life with what I have? Do my muscles just keep tearing themselves apart?
We don’t know.