Seizures! The Latest Trend!

I don’t think I’ve ever written specifically about what its like to have a seizure. I figured I’d satisfy your curiosity, since I had yet another seizure on Monday night.

When I first started getting seizures, I had this long period between my first seizure (conscious, but with expressive aphasia) and the big generalized seizure, another way to say Grand Frickin’ Mal or tonic-clonic seizure.

Expressive aphasia is a very strange thing to experience. The first time, I could say some things, but not others. I knew what I wanted to say, but it wouldn’t come out of my mouth. Eventually, my mind was thinking one thing but my fingers were doing something else entirely. I was filling out paperwork at the ER and I wrote my maiden name twice. I knew it was wrong, but I couldn’t get my fingers to write my married name. I don’t remember anything after that. The doctors were concerned I was having a stroke, so they took me right in (remember that little trick). Apparently they asked me if I knew my husband. I nodded. They asked me to write his name. I wrote gibberish. Then I had a generalized seizure. That whole episode – expressive aphasia to generalized seizure probably took 2 hours or so.

A generalized (or Grand Mal or tonic-clonic) seizure is the kind that knocks you unconscious. You shake around for about a minute, clench your teeth – usually biting your tongue or your cheeks, and wake up slowly – ever so slowly – trying to get your thoughts back in order. For me, I’m thinking clearly again and chatting with the EMT normally about the time we’re 5 minutes or so away from the ER at Stanford.

One of my seizure episodes was a status epilepticus – a fancy way to say I had repeated seizures without regaining consciousness between each one. If these aren’t brought under control, it could lead to brain damage or death. Which is a scary wake up call. ‘The brain tumor may not kill you, but this acquired disorder might!’ After this episode my medicine was changed (adding Lamictal) and I got emergency meds (Ativan) to help stop the seizures from continuing past the first one.

Since that status epilepticus experience, my expressive aphasia period (also a seizure, in case you missed that the first time) has gotten shorter and shorter. I now have a little fuzzy moment where I feel like a conversation is on repeat, my vision goes kind of wonky (the official term) and then I’m out cold. Not enough time for me to get Ativan in my own mouth.

I went for nearly a year and a half without a seizure of any kind. That record was broken in February and once more again on Monday. Ativan (placed in my mouth by my husband) did what it was supposed to do. The ER doctors (consulting with the neurologists) increased my medicine again – taking into account when I’m having my seizures (right around dinner time). They’re calling them break through seizures, not progression, so that’s good…I think. No one wants to leave me alone and frankly I can’t blame them. I’m not sure how that’ll work in the long-term, but we’ll figure it out. Our dog is lovely, but I’m pretty sure he can’t get Ativan in my mouth OR call 911. No service dog skills at all.

My mom is here now helping to drive us about and run much-needed errands (especially needed after our youngest got a nasty stomach bug last night). Her help came at just the right time, but eventually she’ll need to go home.

Seizures come in many sizes, shapes, and colors. Some are minor and some are not so minor. I’ve talked to people who have many a day, but they’re not the kind that knock you unconscious. I know there are many who have generalized seizures on a daily basis, which has got to be a living hell. Some of them are related to tumors or brain damage as a result of tumors/surgery and some aren’t related at all. But I do know that seizures are stupid however they’re delivered to your doorstep.

If anyone is looking for a part-time job babysitting a grown woman , let me know.

Alone Time

I know that some people get energized from being social and having a full schedule of interesting (and sometimes mundane) things to do. My husband is often in this category. He gets home from a long day at work and wants to visit with neighbors, play with the kids, go to shows or events. He is an exuberant and enthusiastic extrovert.

I however, am an introvert (opposites attract?) and have a brain injury. Introverts re-energize by getting lost in their own thoughts, having quiet time, reading a book, mostly things that don’t require talking to someone else. This means that the alone time I need to re-energize is no longer optional, it’s mandatory. I get overstimulated with a full schedule and socializing, even with the people I love most. This overstimulation means that I shut down – I can’t hear conversations, I can’t focus, I get exhausted, and I have to say, ‘it’s time to go’ with little warning. This is exacerbated if I didn’t sleep well the night before – tiredness leads to tiredness or something like that.

Luckily, the people who know me and have been there through the last 18 months know that what I’ve described here is immensely better than it was in the early months. Then, I had to wear earplugs everywhere, visits were limited to very short periods of time, I excused myself from the room without warning, loud noise (including music, and my definition of loud was just above a whisper) was intolerable and it wasn’t unusual for me to nap twice a day. My family quickly learned the signs that I was being overstimulated and gracefully, generously helped me enter my cocoon of solitude.

For people who don’t know me or my ‘situation’, I can only imagine what they’re thinking. I don’t look like I’m sick, so when I find it difficult to have a normal conversation, I’m aloof or a bitch. When I get to the end of my tolerance for noise and stimulation and I look at my husband, giving the signal that it’s time for a speedy departure, I’m ungrateful or a bitch. When I no longer attend concerts or events with my husband, because my low tolerance would completely ruin his experience – we’re clearly drifting apart or I’m a bitch. When I need to excuse myself from the room abruptly to get a moment of quiet so I can go on, I’m just a bitch.

I have good days and bad, just like anyone else. My bad days will find me entering into my Hobbit hole for a nice long nap. I don’t want to talk to anyone. I de-prioritize everything on my to-do list. I read a book. I have another nap.

My good days – when I’ve gotten enough sleep the night before, I can spend an entire day taking kids to San Francisco. I can clean the house from top to somewhere in the middle. I can garden with focused intent on ‘growing things we can eat, dammit’. I can run errands at a super hero pace. I am overjoyed at being able to speak without hesitation, finding every word needed. I make valiant attempts to fix our dryer that won’t start. I cross things off my list at a steady pace and feel no need to add ‘shower’, ‘eat’, ‘get dressed’ to the list, just so I can cross them off. Good days rule! And then I go take a nap and have some alone time.

Post brain cancer diagnosis/treatment, I’ve had to relearn and adjust my understanding of my limitations. I understand that my body and brain can only handle so much. I sometimes feel guilt for needing to retreat into solitude, but I understand that it’s needed. I have a brain injury and a seizure disorder and the overstimulation is exhausting. I want to do it all, but I know I can’t. I want to fill each and every day with seeing friends, volunteering, writing, playing non-stop with my kids, or escaping into nature. But I can’t do it all. Perhaps its cliché, but I have to take care of myself so I can take care of others. I have to take care of myself so that I can continue the fight energetically.

I see people who are so busy that they’re taking or making calls while completing their everyday activities – dropping kids off at school, walking the dog, grocery shopping and my least favorite – while they’re on the toilet. But EVERYONE needs alone/quiet time to just breathe, appreciate what you have, smell the flowers in bloom, feel the warmth of the sun, do something for yourself. Even my very social husband needs his alone time – playing drums, exercising, or walking the dog. Maybe the amount he needs is smaller, but he still gets re-energized by doing something for himself.

I write this post more as an acknowledgement of my needs, giving myself permission to escape into solitude without guilt.

But take time for yourself every once in a while to appreciate all of the amazing things you do, enjoy something you love, and nurture your soul before you go back to the daily grind.