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.
I’m so sorry. I’ve treated you like shit for the last 32 years and I’m sorry. It’s a wonder that you’re still with me.
I’m sorry for hating you. I am sorry for thinking such ugly, toxic thoughts about you. I’m sorry for all of the awful things I’ve said about you—in private and to others—and I’m sorry for never thinking you were good enough. I’m sorry for comparing you to impossible, unrealistic standards and shaming you for not being able to meet them. I’m sorry for starving you, for feeding you garbage, for trying to force you to change, to be something you were never meant to be. I’m sorry for not recognizing your beauty.
I’m sorry for the times I’ve ignored your needs. I’m sorry for the times that you were trying to tell me that something was wrong with you and I ignored you and pushed you farther than you could go. I’m sorry for forcing you to wash one more sink of dishes or do one more load of laundry when all you needed was to rest. I’m sorry for pushing you to the point of exhaustion. I know that I have caused a lot of your troubles and pain by expecting too much of you. You’ve had a rough couple of years, and I haven’t been sensitive to that change. I keep expecting you to function as though you were completely healthy—you’re not. I know that. And you may never be again. I’m sorry for putting those unrealistic expectations on you. I’m sorry for getting so easily frustrated with you. I know I need to accept that and help you learn to function in this frustrating new normal: seizures and side effects and migraines and exhaustion.
I’m hoping that—since you are still with me, miraculously—the future can be better for us. I hope to learn to listen to you and give you what you need. I hope to take better care of you. I hope to learn to love you just as you are, even though you are not what you used to be. I hope to help you keep faith. I hope to learn patience and practice it on you. I hope to appreciate you and be proud of you. I hope that we can learn to be strong together.
Please, don’t give up on me just yet.
I need you.