I saw my neurologist yesterday at the UCLA clinic. I told her what I always do, that my headaches haven’t changed in frequency. I had hoped she would be able to put me in a research study, like one involving transcranial magnetic stimulation that we had previously discussed. To my dismay, she said that there wasn’t enough funding for the study so it isn’t happening this year.
“Is there any other type of study that I could be involved in?” I asked hopefully. She shook her head with real remorse in her eyes, which I don’t get often from doctors, especially neurologists. No, sorry. There was one, but I didn’t qualify- my migraines are too frequent. They want to experiment on an easier case. She has me on her list and will contact me if anything else comes up.
We both agreed that I have tried nearly all the preventative drugs so there wasn’t much point in going that direction. I’m tired of feeling the side effects without any actual benefit. She thinks that the surgeries aren’t likely to help and are too dangerous anyway. She suggested that I consult another specialist since we seem to have hit a wall in my treatment. “A fresh pair of eyes might be useful,” she suggests. My heart breaks a little but I appreciate her honesty.
I don’t know what to do now. It’s weird not having another new thing to try on the horizon. On top of this, last week I saw the film Cake. It is about a middle-aged woman with chronic debilitating pain. It made me FEEL so much, which has been pretty uncomfortable for me ever since I ran out of that theater when the credits rolled to go cry in the bathroom. The main character Claire, played expertly by Jennifer Aniston, is living a lonely life that I have always hoped to avoid, one in which she has let her anger and grief push everyone away that cares about her. She unabashedly abuses painkillers, washing them down with bottles of white wine. I never want to become that person. My biggest fear is that another decade of chronic pain will turn me into her, this flat, hopeless person that no one wants to be around.
Our situations are very different though. Not to spoil too much, but she has a major accident to blame for her pain with the scars to prove it. She had this terrible event happen to her, with a very specific thing to blame for it. I have no such thing, which I am thankful for, yet I can’t help but wonder if having this THING to blame would make the pain a little bit easier to bear or explain. I can’t point to an MRI and say, “Right here, this is why my head always hurts.” I can’t prove it. This thing that takes over my life and makes everything so much more difficult and taxing than it is for most people – I can’t explain it.
“What if I am just fucking crazy?” I ask my therapist, throwing my hands up in frustration.
She smiles gently at me. “Real crazy people don’t question their sanity.”