This month has been about bravery for me: I painted my toenails bright blue, I bought some crazy leggings, and I drove my car for the first time in two years. I got my driver’s license back. I feel like I’m 16 again. (Hence the leggings and blue toenails.) I sobbed when I opened that letter: reinstated. It felt like my entire life was being reinstated. Reinstatement meant independence. Reinstatement meant freedom from my rigid, hyper-planned schedule. Reinstatement meant that I didn’t have to rely so heavily on my husband and my grandma and my parents and my in-laws and my sister. I had become so used to planning my life around other people’s availability (because I always needed a chauffeur) that I had forgotten what true freedom felt like. When you have epilepsy, driving is scary. These past two years have been filled with anxiety and fear: epilepsy is such an unpredictable disorder, and just because a medication is working now doesn’t mean it always will. I was terrified of having another accident or causing an accident or destroying someone’s house or killing a pet dog or hitting a school bus full of kindergarteners...okay, I have to stop now. I can’t let myself fall down that rabbit hole of horrors. I can’t live my life in constant fear, even if those fears are legitimate. I’m more hesitant than I was at 16--I have driven twice now, and I did ujjayi breaths before I even started the car. But just getting behind the wheel was a huge, terrifying, life-changing step for me. Starting the car was another. And driving six miles to the store to buy my own groceries with pink leggings and blue toenails? That's bravery.
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In my house, there are 57 rolls of toilet paper. Three people live here.
(I just got up from the computer and counted. Um, toilet paper rolls. Not people.) I have 37 blank notebooks and 43 brand-new mechanical pencils. I have 45 spools of ribbon. Up until Sunday, I had 8 boxes of Annie’s Bunny Grahams, 48 cans of Spicy V-8, and 3 unopened jars of Pace salsa (plus the open one in the fridge). It occurred to me recently that this miiiiight be overkill. I know parents of five who don’t have as much stockpiled as I do. (When I made this realization, I donated six boxes of Bunny Grahams--among other things--to the food shelf.) What would possess me to buy 45 spools of ribbon or 57 rolls of toilet paper?? Well, you know...just in case. Just in case we all contract dysentery and NEED that much TP. Just in case I need to craft 1,000 paper cranes with that notebook paper. Just in case I need to make an emergency Maypole or escape from a second story window on a hand-crafted rope of ribbon. Just in case I need to suddenly feed 64 kindergarteners a snack of Bunny Grahams and make three vats of chili for their parents. Yeah, every excuse I came up with was equally ridiculous. So I started thinking about why I feel like I need so much extra, and why I keep buying in spite of knowing that I already have more than enough, and I came up with this: it's all about fear. Losing my driver’s license was a terrible loss of independence. Something as routine as grocery shopping became impossible to do alone. I can’t drive, and not driving means that I can’t drive to the store. (The closest one is five miles away.) I can’t pick up my foster daughter from swimming lessons or take her to soccer practice. I can’t make plans to meet friends at a restaurant or to see a movie. I can’t drive myself to the dentist, or the doctor, or the chiropractor. Regardless of my inability to drive, life goes on. All of those errands still have to happen, and they do, but they now involve zillions of phone calls and nearly as many polite refusals from people who are already busy going to their own doctors and buying their own groceries and working their own jobs. So, when I get the chance to go to a store, I buy in bulk. I’ll buy two or three (or eight) when one would do, just because I am afraid of making those phone calls, of hearing the “Oh, I’m so sorry, but I have to _____ that day, so I can’t drive you. Maybe another time, though?” Having enough stuff around to supply an emergency underground bunker for three years makes me feel kind of...safe. It keeps me from unnecessarily subjecting myself to the “Oh, I’m so sorry, but...” spiel. (I still have to ask for rides, but they are mostly limited to necessities: appointments and perishable grocery items.) Having a disorder as unpredictable as epilepsy has made me carve predictability into the changing landscape of my life in any way that I can. Bulk shopping offers some predictability, but it hasn’t solved the root of the problem: my loss of independence. Perhaps I have carved away too much. Having 45 spools of ribbon isn’t improving my quality of life, and it’s not going to gain me any independence. (Unless I use it all to make 4th of July pom-poms. Then it might help a little.) I’m afraid of needing others, but I’m also afraid of not being reliable in a way that I once was. I’m afraid of running out, of seeing more lack and gaps in my life (even Bunny Grahams). Epilepsy has made enough lack and gaps. And I can’t exactly fill those holes with toilet paper. Tomorrow I’m going to the Mayo Clinic for a brain surgery consult.
It’s not surgery (yet). It’s just the consult. Still, I am scared shitless. I’m scared because I have been backed into a corner by my own body. I don’t exactly have any other options (other than continuing to have seizures, and those are slowly causing me brain damage). If I want to have any shot at a normal life again, this is pretty much the only thing left for me to do. I’m just not all that excited about having a part of my brain...killed. Or zapped with a laser. Or scooped out with a spoon or whatever. I’m not exactly sure what they do, but I know that it does involve removal of the part of the brain where there’s seizure activity. My doctor seems to think that I’m a strong surgical candidate. He’s been suggesting this option for a long time, and I’ve been hesitant to pursue it because...well, would you want part of your brain destroyed? Any other organ, I’d be totally down. But my brain? Um...not so much. Especially since no one seems to be quite sure what the right temporal lobe even does in right-handed people. (They know in left-handed people, but not in right-handed ones.) I’m right-handed, but I'm also slightly ambidextrous (I can only shoot pool left-handed, I favor my left hand when I use a pottery wheel, and I can write fairly well with my left hand, among other things), so the thought of them messing with this particular region really freaks me out. They said I’ll probably lose...something. I mean, of course I would--part of my brain would be gone. But they can’t tell me what I’d lose, and that’s terrifying. However, living in fear and expectation of seizures freaks me out, too. I cannot decide which fear is greater. I am so weary of my identity being wrapped up in this disorder. I can’t go anywhere without someone asking me how things are going. I’m grateful for people’s interest and concern, but the answer is always the same: The seizures are still happening. Nothing has worked to stop them. And having to tell the story over and over sucks. Being able to drive myself to the grocery store again is a small dream. Being able to leave my house alone is one, too. Surgery could make those small dreams possibilities, but I can’t help but wonder: at what cost? |
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January 2023
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