My Adventures as a Cyborg: Epilepsy Monitoring Unit, Day 1

1. Me, pre-Frankenstein. 2. The electrode headdress. 3. Dots made by blue eyeliner to mark electrode attachment points. 4. Gluing on the electrodes. (This smells horrible.) 5. Finished product. (See how excited I look?)

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So, here I sit—confined to a hospital bed for the next 4-7 days, restricted to button-down tops and blue gowns, with what feels like a thousand electrodes glued to my scalp (and hair).  I’m in the epilepsy monitoring unit (or EMU) in Rochester for an extended seizure study.

I’ve tried two (sort of three) epilepsy drugs now over the past two years, and they have failed.  Since switching to Keppra alone, I’ve been suffering very frequent seizures, but they have been minor, so I haven’t really been writing about them.  They’ve just become part of my routine.  I’m tired afterwards, but I am not convulsing or hurting myself anymore, so…?  Not a whole lot to say.

I’m here at the EMU to pursue other treatment options, to see what is possible, because I am coming to terms with the fact that I really am disabled, and that I will not be able to do much as long as things are this way. 

It’s a pretty shitty realization, let me tell you. 

I had a 7:00 check-in this morning, and hubby was my rock—I love that man.  He got me here last night, watched Downton Abbey with me and found me apple pie and ice cream after 9 pm—quite a feat on a Sunday night—and then he snuggled me to sleep in the Kahler Grand Hotel (a historical relic—the amenities reflect its age, but it’s still a cozy place).  He carried my luggage, checked me in this morning, ordered me breakfast, asked the nurses and doctors all the right questions, and he helped me to the bathroom twice (I cannot get out of this bed without assistance—frustrating—and now that they have reduced my medication, I require this contraption that looks like a baby jumper, lest I fall and sue the hospital for neglect—see pictures).  He also watched several morning talk shows with me, told me I looked like a sexy cyborg, hugged me the best he could given my headdress, and kissed me goodbye.

Sexy is a stretch, but cyborg may be accurate.  I have dozens of colored wires glued to my head and that are all hooked up to a computer.  (This is why I am bed-ridden—well, that, and in case I have a seizure.  They don’t want me to hurt myself.) That’s the purpose of this study—to have seizures.  They’re reducing my medication to increase the likelihood that I’ll have one, so they can capture my brain’s activity using this nifty headdress thingy and try to figure out what’s going on inside my head. 

I’m not sure I want to know, to be honest. 

But I must be brave and find out. 

1. Doctor's orders--I need help to get up. Ugh. 2. Sliding my arms through the baby-jumper thingy. 3. The ceiling track that helps catch me if I fall. 4. Bathroom selfie. (It was very, very hard to pee wearing all these wires.)