Wednesday, May 25, 2016

Seize the Day

Clonazepam. That's the name of my new medication — my teeny weeny little blue pills. I feel so Valley of the Dolls.

I really admire Dr. Shoja. I feel truly blessed to have a psychiatrist who is so invested in collaboration. I like how she puts me in the driver's seat. My seizures freak my friends out. They see me so helpless, they want to protect me, their reaction is to take charge but in doing so they disempower me.

Dr. Shoja was not at all freaked out by my seizures. She has seizure disorders before and she has seen brain scans of people having seizures. like mine. She knows what is happening in my brain and it felt so incredibly wonderful to see her so unflustered by my two seizures in front of her.

Clonazepam is a drug I can take on days when I feel the seizures coming on. I do not have to take it every day. We do not expect to stop them, but we expect to reduce their number and intensity. I can get through the mild ones quite handily.

The more severe ones are very dramatic. I do not want to have one of them alone in public, but I build up to the bad ones. Characteristically, I have several minor ones before the big ones come. So now, if I have a two mild ones, I can take a pill and know no major fall-down-limp, convulsive one is going to happen.

There is an "abnormality" in the brains of those of us who have seizures under stress. I have been feeling weak and a bit ashamed of the things that have been happening to me, but Dr. Shoja made it very clear to me (bless her professional heart) that this is not my fault by explaining what scans have revealed about seizures characterized by jerky spasms.

Clonazepam is for my specific type of seizure. It felt very good to hear her say this because I realized that there are so many people with this kind of seizure disorder that there is a specific medication for it. It feels great not to be alone with my challenge. You have no idea what it is like.

The only sensory thing that keeps working is my hearing. My eyes close or lose focus or dart around, I go limp and I can't talk or move. I am like a deflated balloon. Then I come out of the deep zone into the fog. In the fog, I drift in and out of my ability to speak. I cannot move and cognition is severely compromised — very severely. Then I come out of it either very, very slowly or with startling suddenness.

Last night, after having had about ten of them, I had a cluster attack. That is just one after the other after the other and I fall deep, deep into desperation and fear. I get very scared I am going to have a heart attack. It's feels a little like when friends, when you were young, held you under water against your will.

So when I came out of Dr. Shoja's appointment today, I asked Bruce to let me come home alone. I felt I could do it and I did. I felt so proud of myself. I feel my world is bigger.

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