How was my Halloween? Eventful. Scary for my husband. Depressing for me. But I’m getting ahead of myself.
I have epilepsy. It isn’t a secret or a revelation, it’s just kind of always been there. When I was younger, my doctors and parents thought I had epilepsy and specifically absence seizures (then called petite mal seizures). Medication didn’t make a difference and as I got into my late teens a few neurologists questioned if I had epilepsy or even had seizures. It became a power struggle of sorts. Doctors arguing about if I did or didn’t have epilepsy or seizure activity. Most acknowledged seizure activity but questioned if I actually had a seizure disorder.
In college, I had two major episodes that I now understand were focal seizures. Before that I was only familiar with absence seizures, where I am gone for three to five seconds. I don’t shake, but sometimes my eyelids will flutter. I have no muscle control during them and cannot function. If I’m talking, I stop immediately. If I’m holding something, I drop it. If I’m walking, I stop. I cannot move during these seizures and just freeze until they’re over. I don’t know I’m having them because they are so short and don’t have physical after effects. I only know I have them if I fall or drop something, but don’t remember doing either. So with these timing is everything.
But in college, something else happened. The first time something happened, I was headed to class. I was walking up the steps to the building and that’s the last thing I remember until I came to nearly thirty minutes later. I was confused and did not know where I was, where I was supposed to be, the day or time. It took me about ten minutes to regain any awareness. I was on the other side of campus. I was embarrassed but didn’t follw up on it because I never considered that I had had a seizure. (It’s now confirmed I have focal seizures, and with these you continue to move/function but don’t have often lack awareness. Wandering and other things are common.)
Two months ago, my diagnosis was confirmed definitively. I had epilepsy and I was having dozens of seizures a day, both focal and absence. I was aware of a few absence seizures, but had no idea I was also having focal seizures (I didn’t even know what focal seizures were at that point). For several months, I have been impaired cognitively. Memory, tracking and could not focus on anything to save my life. Since my diagnosis and treatment with medication, I am more me again. Tracking, memory and focus all back to normal – almost. And while I am still aware of absence seizures, more than I should be having, I thought we were moving in the right direction. Until Halloween…
My husband, Roy, and I were driving home. I was really excited this year. I had sorted and counted out all the candy. We had to pumpkins carved to perfection. We both had Halloween outfits on and I had laid out costumes for our pets (we only dress them up for Halloween and Christmas) – the cat was going to be a devil, and our dog an Angel. Both were incredibly fitting.
Roy was talking about using candles to light the pumpkins when I felt funny. There was a pounding in my ears. Not a ringing, but like a mallet made of air – hard, painful ear punches. Then I felt hot all over and it was hard to breathe, when my stomach rolled angrily. I put my hand to my mouth, because I expected to puke then and there as I was hit by the worst vertigo I have experienced in years. Roy noticed and said my name, asking what was wrong. I touched my lips to indicate I couldn’t answer without getting sick, and that’s all I remember.
When I came to, I was on a hospital bed, with staff swarming. I couldn’t see Roy and didn’t understand where we were or what happened. I thought my blood pressure had bottomed out and I had passed out because that used to happen when I was on dialysis and what I experienced felt a lot like that.
“Ah!” I cried out as someone jabbed me with an IV. No one was talking to me, until a doctor came up and asked me my name, the year, and where I was. The last one I struggled with. “A hospital,” I replied because I had no idea where I was specifically. I’m grateful he didn’t ask who was president because I would have refused to answer that one.
He tried to convince me I had had a seizure, but I didn’t believe it. I was sure it was my blood pressure, but he assured me that my blood pressure was fine, but all of my labs were off in the way they should be after a major seizure. I kept demanding proof while simultaneously convincing them that it was not my shunt. With my shunt, you never have to wonder if it is. But I guess that wasn’t a question, it was really, “Is it the shunt, too?”
I had a CT scan and all the normal stuff, I guess. An hour later, I had been successfully convinced I had had a tonic clonic (grand mal) seizure. Roy told me in the car I became completely unresponsive and started to jerk in my seat. Luckily, he was three minutes away from a hospital. He pulled into the ER drop off and by the time he came around I have started convulsing violently. He held my head as he yelled for help. Several people took me, holding my body as they immediately injected me with Ativan to stop the convulsing. The emergency staff convinced me what they saw was a tonic clonic seizure. There wasn’t any doubt…
To say this bothers me is an understatement. I’m still processing. I have never had a tonic clonic seizure before with the exception of on my 25th birthday, but that was due to a 109-degree fever and never happened again, so it really doesn’t count. The idea that this is a new reality for me, isn’t one I want to face just yet. I love my new neurologist, but she was frank (which I appreciate) rather than just saying what I wanted to hear. It’s extremely rare for adults to develop new types of seizures. Typically, it happens in children and adolescents, so here I am being rare again. But having had one, opens the door to having another. It’s not just possible – it’s likely.
No one wants to have this kind of seizure (or any kind of seizure really), but for me there are so many things that make it scarier. First, my shunt. If my head is even slightly bumped, my shunt usually breaks. This is a device in my brain to drain spinal fluid and stop swelling. When my shunt breaks, I only have a few hours to have it fixed or I’ll die (I have gone catatonic before when pushing the deadline). Fixing it means brain surgery. Brain surgery isn’t exactly easy or without risk. And pardon the language, but recovery is a bitch.
If that weren’t enough, I have brittle bone disease. Basically, I am super breakable. I can stub my toe on furniture and break my foot. My bone density is nonexistent and there is no treatment or cure for this, it’s just reality. So what happens when I’m standing and start to seize? I’ll fall. I’ll bang myself on the floor and on furniture. It’s very possible that a single seizure could result in multiple fractures. Epilepsy runs in my family on my mom’s side, the same side the brittle bone disease comes from. So I have seen the damage this kind of seizure can do. And again it’s more than just possible, it’s likely.
Then there is the whole emotional thing. I mean this reality and unpleasant consequences are anxiety-inducing sure (which is funny because lack of sleep and stress are my two biggest seizure triggers) but it’s more than that. Friends and family have died from these kind of seizures, including my Aunt Linda who was so special to me. I was devastated when she died and we were so close I’m the one who wrote and gave her eulogy – I was twelve. There isn’t a day that goes by when I don’t think of her, remember her with affection and feel sad we didn’t have more time. Now with this, I can’t help but think if I’m going to end up like her. We were so alike in life, are we doing to be alike in the end? It’s morbid, but this is just, such a trigger that brings up so many things for me. It’s impossible for it not to.
And of course, I hate myself for letting it. Because I have to be strong. To me it means no crying, no fear, no vulnerability. It means being a warrior; whatever faces me have met their match, when there was never a match at all. And usually I am. Brain surgery, heart surgery, autoimmune disease causing my kidneys to fail – I’ve faced them all with little or no flinching (okay, the kidney failure was a little more than just flinching but I quickly recovered). But this, it’s just hard. I mean, I’m sure I will eventually. But this reality isn’t some force I’m familiar with (like surgeries and fractures) or something I can imagine as some foreign demon to vanquish. I’ve handled worse, I know that rationally, but this – this is my own personal boogeyman. It was the thing handpicked for me that would make me want to hide under the covers and cry.