#in my brain. she hurt her chin and then they put a bunch of bandaids and stickers on to feel better

[saturnsickle]

Polaroid from Roy's Fridge

[quirky-quizzical-queer]

My Trip to Wonderland

CW: This is about my own experience with epilepsy. It’s long, it’s raw, and it’s real. Read on if you wish.

Lewis Carroll, the author of the Alice’s Adventures in Wonderland series, is thought to have had temporal lobe epilepsy. Although there is little physical proof of such, due to the time period, his works of fiction have been taken as an allegory to what we now call auras. Even today, epilepsy is a condition that lacks understanding. This was the case even more so in the 1800s. Depending on culture, epilepsy was either thought to be divine, or a product of witchcraft for quite a while. During my diagnosis and subsequent events, I often described my auras as falling into a dark hole. I suppose I’ve spent a bit of time in Wonderland myself.

I wake up in an unfamiliar room. The lights are bright. They sing like high pitched crickets. Can anyone else hear them? Is anyone else here? Where am I, anyway? I try to move, try to speak, but I can’t. I must have made a sound of some sort, because I see someone’s face approach me. “Don’t try to talk. You had a seizure. We’re going to move you to a bed.”

A seizure? That doesn’t make sense. I don’t have seizures. Before I can tell this stranger that, I’m being moved by 3 people. I still can’t form words. I still haven’t figured out where I am, or who I’m with. I hear sirens. One of the girls has a stethoscope. They start asking me questions. I know the answers, but I can’t put the answers into words. I don’t understand what’s happening. The sirens get closer, and the larger group of girls starts to panic. Five of them still surround me, and they refuse to tell anyone else why sirens are approaching. These five must be characters in my own wonderland. The one telling me what happened is the Cheshire Cat. The girl who carried me to a more comfortable place must be the White Rabbit. The quiet one is the Caterpillar. The other two seem nice, but they’re giving me king and queen of hearts vibes. That can’t be a good sign. Now, the paramedics rush in with a bunch of equipment. They attach sticky pads to my chest and head. They poke and prod me with needles. They ask me the same questions as the girls. I still can’t answer them. I still don’t understand what happened. It’s frustrating. I know these are the good guys, but they really like to push my buttons. They’re the Mad Hatter. They rush me into an ambulance and out of the strange, bright building. I look out the back of the ambulance. I seem to be in the woods. How the hell did I get here?

The ambulance rushes me to a hospital that looks like something out of the 50’s. I’ve visited family and friends in hospitals before, and I’ve never seen anything like this. The five girls who were surrounding me at the cabin are still here. The only thing separating me from the psych patient in the next “room” is a thin curtain. I can hear all of her business, and I know that she can hear all of mine. The doctor asks me the same set of questions the girls and paramedics asked. This time, I can form one to two word answers. I still have no idea what happened that morning or the night before. Or why these five girls have taken such an interest in me, when I only know the names of two of them. I’m told that the sticky stuff on my head was for an emergency electroencephalogram. I don’t know what that means, but I’m falling in and out of sleep. My body hurts. This headache is like nothing I’ve ever experienced. And I’m hungry. I’ve been here for hours. Wait. I’ve been here for hours. Where is my family?

I hear the doctor whispering to the girls who came with me. He mumbles something about a psych transfer. I’m confused. Finally, my mom walks in. I don’t know where my dad is. She’s with her friend. They tell me they’re taking me to another hospital. I’m still confused, but too tired to argue. I just need food, first.

After a stop for food, my mom and her friend take me to another hospital. This doctor asks me the same set of questions, along with another set. He wants to know if I’m a danger to myself. I don’t think I am. Did I say something wrong? Had I told these girls something I didn’t remember? I don’t know. They tell me they don’t feel that they need to keep me for observation.

I leave the hospital around midnight. I have texts from strange numbers asking if I’m okay. I have a feeling I’m not okay. I’m not okay, and I won’t be for a long time. But I don’t really know how to answer that question yet.

It’s been about two months since I was given the official news. My EEG was abnormal, and I am classified as having “juvenile myoclonic epilepsy”. This wonderland is not one I’m accustomed to, yet. The name is misleading, because it’s not something I’ll ever grow out of. I’m still trying to wrap my head around that. I still don’t remember what happened that weekend before I fell into the rabbit hole. I still wake up twitchy every morning.

The insomnia is the worst part. I wake up in a cold sweat in the middle of the night, shaking. I’m not having a seizure, but I dreamt I was. In the dream, I was in a pool. Floating down the lazy river, when I began to seize. The pool was too crowded, and no one saw me. This is why I don’t sleep anymore. It’s easier to just stay awake. I’d rather not return to Wonderland anytime soon.

Another month, and I’m told I can drive again. This is a sense of freedom that had been stripped away after my first seizure. I’m ready for it to return. I’ve just returned from camping. I’m a bit tired, but I feel okay enough to go shopping. I think. I drive to pick up my friend, and we head to the mall. And…. into the rabbit hole I go. I remember nothing from arriving at the mall, to being awakened by paramedics. For some reason, I’m never wearing pants when these sons of bitches happen. The paramedics know me by name now. Their favorite question to ask me is, “who is the president?”. Depending on my level of lucidity, I usually make them laugh with my answer. At least I can be of comic relief to the people who save my life. My friend tries to tell them not to take me to the hospital, that I have a seizure disorder, but they won’t listen. My friend is quiet, but tries to help. She doesn’t visit Wonderland with me, but she’s there to hear about it afterwards. In my own wonderland story, she plays the role of Alice’s sister.

It’s another three months before I can drive again, but this time I can drive for quite awhile. It’s a feeling of freedom I haven’t known for a long time. That is, until I get myself into a situation at a swim meet. Maybe I have psychic dreams. Who knows. I can not stop twitching at the meet. I twitch so hard that I break my “Coach” clipboard. I’m lucky my iPad is still intact. I drive myself home, and remember nothing from there. I must have gone into the rabbit hole. My family greets me once I return from Wonderland. The good news here being, since I’m home, everyone knows not to call a paramedic.

After this, the seizures become more frequent and less life threatening. I was given rescue meds, just to be safe. They’re used once. And improperly. I sleep like a baby that day. And night. And the next day… and the next day. A seizure in Kroger, a seizure at the state fair, a seizure at the amusement park, seizures at work. They become a frequent occurrence. Simply a part of life that I would have to deal with. Luckily, my pants remained on for most of these. Despite the medic-alert bracelet I wear, so many people insist on calling paramedics. When four medications failed, surgery became a question. After all, why was I healthy for nineteen years, and suddenly I can’t walk out my own door safely?

One day in November, a year and a half after diagnosis, I walk out of my apartment door to go grocery shopping. I don’t know how long I am in Wonderland for this time. I am alone. No one familiar greets me when I return. This trip to Wonderland was different. I awake in an ambulance. These guys look familiar. The Mad Hatters. I try to talk, to no avail. I’m wearing a neck brace. This is not a good sign. I check. I’m wearing pants. I make noise to try to ask what happened. They inform me that I was found unconscious in the snow by the construction workers outside of my apartment, and I may need stitches. “Where?” I utter. They point to a bandaid on my chin while they take my blood sugar. Being curious, I rip the bandaid off. Yeah, I was going to need stitches. And some new clothes. At least I knew that was melted snow, and not pee. I notice that my glasses are nowhere to be seen, and my tooth is cracked. Great. I was nowhere near driving, but this is a major setback.

The less dangerous seizures continue. Falling in and out of Wonderland. It exists not only in seizures, but also in dreams, and in memories of seizures. Only being able to piece together events based on what I was told. Seizure on Christmas Eve, seizure at the zoo lights, random seizure here, random seizure there. The meds are not working.

January, I fall into Wonderland for a longer time. I’m there for three days this time. The actual seizure lasts thirty minutes, but the paramedics have to push meds to make it stop, otherwise I would be risking permanent brain damage. They rush me to a hospital, where I fall in and out of consciousness. They won’t let me get out of bed for any reason. I remember visitors, but I don’t remember who. I remember a lot of machines. I remember them finally changing my meds. This was another very different trip to Wonderland. No White Rabbit. No Cheshire Cat. Just me and the Mad Hatters.

After the med change, I only have one more seizure. I’m on my way to work, in the passenger seat, and I fall into the rabbit hole. It’s a quick trip. Uneventful.

And suddenly, the seizures stop. With one med change, they’re gone. No more rabbit holes. No more scaring the people I’m around. After three years of constant, terrifying, seizures; they’re gone. Alice has left wonderland. So to speak. Wonderland still exists. The nightmares are still ever-present. The memories are there. The twitches. I doubt those will ever go away. My journey in wonderland has been an adventure, that’s for sure. If I could change it, would I? Truthfully, I don’t know. It’s made me who I am. It’s made me mad, but after all, “we’re all mad here”, aren’t we? And I think the best are. I suppose if Wonderland is what it takes to gain perspective; just call me Alice.