Sunday, November 21, 2010

truth: spiraling.

Things are completely out of control.

Even since my former post, seizures have worsened and we are unable to get the right help we need. Apparently after you have one seizure, the medical community is no longer concerned and your case is no longer considered urgent. Or they condescendingly inquire about any stress in your life. Yes, doctor-THIS.

I think, but I am unable to move, to speak, to react. A familiar heaviness covers the pathways from my brain to my heart, my limbs, my eyes, and my mouth. I am completely disconnected from my own body.

Lately, there's been no clear beginning or ending...just an ongoing sequence of unresponsiveness, stillness and unconsciousness, followed by confusion, followed by more unresponsiveness. Mix in a couple of convulsions and we have Saturday night at the Lipps'.

I spend so much of my effort attempting to stave them off by trying to keep my mind "distracted"-but I am always overcome eventually. It turns out that mentally reviewing multiplication facts, the first 26 digits of pi, or my favorite words in alphabetic order are futile opponents against this relentless force. (Oo-"relentless"-maybe that will be my new "r" word.)

What's that expression about losing the battle, but not the war? This is a civil war (me against my body) and either way, I lose.

Thursday, November 4, 2010

the new norm.

Unpredictability has become a predictable foe during my recovery. Recovery is not over just because my hair is growing back. "Recovery" is a process that I am still in. I am reminded of that fact every. single. day.

I look normal and act like everything's normal, but it is far from normal...unless you had a brain tumor and are having reoccuring episodes from the after-effects.

Medication seems to help during the day while I am working. But every evening, I crumble, despite a second dose. People (besides Tim) don't see that. So they like to think it's not happening. They can't handle hearing about it. So I suffer in silence. God forbid I make anyone uncomfortable.

This world of neurolgy and neuro-oncology and EEGs and MRIs has become a regular staple in my schedule.

Roswell Park is not just a place I sang in with a choir or that my students sent letters to (while thinking I did some good deed). It is a place I know well. There is a particular scent there: the stench of impending bad news.

Since my seizures are still not controlled by medication, I need to have another long-term EEG monitoring done. That means a week at the hospital with probes glued to my head. The next week I have off from work is in December. Merry Christmas. If that test shows epileptic spikes (which showed in my 30 minute EEG last month), I may have to have a second brain surgery.

I will have to relive this nightmare another time. Start over. "Recover" again. Have another scar from having my head sliced open. Have another artery cut. Have more cells removed from my brain-maybe the part where my memory is stored. Maybe the part where language is stored. It depends on where the seizure focus is. If the surgeon is off by a millimeter, I could become paralyzed.

Even if the test doesn't show constant epileptic spikes and the episodes are actually psychogenic, I will need to continue medication. Medication that currently makes me dizzy. Medication that makes my limbs heavy so that I fall off the couch, unable to move.

In addition, there is a 10% chance my tumor will grow back. "Oh, that's good!" they say. But that's 10% more than they will ever have to face. There is a 100% chance that I will be on medication for life. There is an equal probibility that I will live in fear all of my days.
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