“Is this a normal size bed” I whispered timidly.
“Yes.” My husband just stared at me…not sure what to expect next. “Why?”
“It feels like I’m too big for it. Like it belongs in a dollhouse.”
“No. I promise, everything is perfectly normal sized”.
I had only woken from my coma a few days prior and things were still a bit foggy. We really didn’t give that a second thought considering everything else.
There was never a shortage of things to worry about and focus on with my recovery. Sometimes the issues were mundane like headaches, which you’d expect after brain trauma. Other times, the problems were bizarre and complicated and as impossible to describe as they were to believe. I routinely saw snakes. Not actual snakes, but snakes made out of triangular prisms. I always explained it to doctors the same way each time: one triangle is right side up, the next is upside down, then right side up, and so on until it forms a chain…or a snake. They are semi-translucent and shimmery like prisms casting rainbows. They slither through my field of vision. Only appearing in my left eye. Always just my left eye. It starts with one, then two, then there are so many that I cannot see out of my left eye. It can last anywhere from 30 minutes to two hours or it can stop just as quickly as it started. None of the doctors could figure out what was causing the snakes…except to say it wasn’t my eyes. My eyes were perfect. Well finally! SOMETHING on me got a clean bill of health! The overwhelming assumption was that the episodes were ocular migraines and there was really no cure. So I learned to live with them.
As my recovery progressed, new problems popped up almost weekly it seemed. I went to speech therapy to help my memory. I went to Occupational Therapy to help focus my vision issues. I went to Vestibular Therapy to help with my balance and dizziness. I saw Neuro Opthamologists for the ongoing vision problems that no one could explain. I was having trouble focusing despite having perfect vision. I couldn’t get my eyes to communicate what they were seeing to my brain. The snakes were making appearances three times per week or more and I was really beginning to hate them. It got to the point that my husband could just look at me and see the expression on my face and say “snakes?” And I would just nod my head.
As a survivor, I feel like I am constantly going to the doctor or finding things that are wrong. It’s overwhelming and disheartening. I was keeping things to myself either because I didn’t think they were important or I felt like I was being a hypochondriac. I had this vision that the doctors see my name and think “oh gosh, her again…what NOW?!” So I just tuck things away and hope they’ll go away on their own or, at the very least, not kill me.
I had been struggling with weird feelings of the room or the furniture being too small for me again or everything pushing away in a tunnel. And so many times, I had to stop when I was walking because the floor was moving. It felt as though I was always on a people mover or an escalator and I couldn’t get my footing. It was the strangest feeling to walk into a room and all of a sudden, it felt like the ceiling was coming down on my head. I had mentioned this a few times to my husband, but never to the doctors because it just seemed weird and I’ve been laughed at for the snakes before, I could only imagine what this would cause.
As I learned to live with all of these new problems and navigate my daily headaches, I had the spell at Chik-fil-A that I recounted in Episode 14. That issue actually brought me some closure that I wasn’t expecting. On that particular day, the ER told me my potassium was dangerously low and they seemed to think that was the end of it. I followed up with my neurologist the following week though and they initially wanted me to see a cardiologist, but as we talked through the symptoms I had and what exactly happened, they decided that it would be ideal for me to see an epilepsy specialist for a 7 day EEG. I was full of emotion…perplexed, scared, defiant…I didn’t have epilepsy! That’s not what this was. Seriously…hadn’t I been through enough?
I succumbed to another doctor and more tests. After all, I’m the one that wanted answers.
I went for my tests and as the days passed, they weren’t able to find anything definitive. They kept me sleep deprived to trigger a seizure, which wasn’t hard since I don’t sleep anyway. They’d see blips on the screen where I’d get close to one, but it would never fully form into the wave. And then the doctor came in to talk about what he had seen and the experiences he heard from me. Based on all of my symptoms, he believed that I did, in fact, have epilepsy. Seizures can start any time after brain trauma…from months to years afterwards so this wasn’t unusual. He also thought that I had something called Alice In Wonderland Syndrome. I actually started laughing at him because I thought he was kidding. Then I thought he was making fun of me. Turns out it’s actually a disease and I had it.
I left the hospital that day with new diagnoses and more medicine to add to my massive pill caddy. I was struggling somewhere between relief that I wasn’t crazy and anger that there was yet another thing wrong with me.
It’s been 10 months now and I’m doing much better. I’ve had some seizures…mostly when I get extremely tired or worn out. The seizure medicine has stopped the Alice In Wonderland episodes for the most part…occasionally I have episodes where I am too big for a room and that seems to also happen when I am exhausted. And a very interesting success was that the snakes have entirely disappeared. It turns out, they were seizures as well. When I noticed they had stopped, I mentioned them to my epilepsy doctor. I had never considered mentioning it to that team before because I never considered that they were seizures. So finally, after 3 years, I have said goodbye to the prismatic snakes that haunted me several times per week. I’m learning to take things in stride and I have found an even deeper love for Wonderland.
Maybe Alice had it right…
“You’re entirely bonkers. But I’ll tell you a secret. All the best people are.”
