The past week has been good. My mysterious left leg phenomenon vanished almost as soon as I posted the previous blog. I noticed it in the car once or twice more, but other than that it’s been fine. I walked like Igor for a while. Not the Stravinsky one but the Frankenstein one.
The pitch change relating to light coming in my left eye I have confirmed over and over. At a certain time of day when the ringing is incessant I can manipulate the pitch by controlling light. I have a timely appointment Monday morning with my neuro-ophthalmologist and I will have plenty of questions.
The electric detonations in my head continue, though they are less intense due to the new medication. This week our orchestra is playing the "Doctor Atomic Symphony" by American composer John Adams. During performances I can't help but imagine miniature Los Alamos experiments inside my head every time one of my jolts occur.
The new prescription (Trileptal) instructs me to take the pills “twice a day” and I have worked out a way to take one pill before my brain shocks begin and another pill right after. This means taking the two pills as close as thirty minutes apart, but it is still technically “twice a day.” In any event, it does something to help during the worst part of my day. The shocks are better. But only a little.
Yesterday I ran into a friend and updated her on my condition.
“Wait,” she said. “In addition to the tumor you’re developing Epilepsy?”
I replied, “Maybe yes, maybe no. At least the medication is for that. A disproportionate percentage of craniopharyngioma patients develop Epilepsy.”
“I have Epilepsy,” she said.
“What?” (Why am I not notified of these things? I have known this person for years.) “You?” I asked.
“Yes. Since I was nineteen. Doctors didn’t know what it was.”
“Aren’t there, like, sixty different kinds? What kind do you have? I have light flashes in my left eye. I call them my electric butterflies. Do you have light flickers?”
“No,” she replied. “Mine are like auras rising up from inside me that occasionally lead to seizures.” She gave me the technical name. “Until I was diagnosed I didn’t know where to turn. I even tried exorcism.”
“Can you spin your head around? You could make a living just collecting bar bets.”
She was not amused, so I continued, “Anyway, it’s still early and there are so many different kinds. That’s if I have it at all.”
I thought of another little thing I have noticed recently and added, “I also have these slight arm or finger twitches.” I mimed a jerky motion with my left arm.
She nodded knowingly and donned a Welcome-To-The-Club look on her face. “Aha. So you're a lefty."
Saturday, April 17, 2010
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