Twelve years, five doctors and a little over $100k is all it took to confirm what Google told me in a few minutes for free: I (probably) have epilepsy.
The first time I really remember time traveling is when I was sitting in my office at my first ad agency job when I was 24. I kept having these strange moments of deja vu and in my head I would hear over and over a line from The Simpsons, “Dental plan. Lisa needs braces.” The weirdest part is that I would completely forget where I was. I could see through the doorway and that there was a hallway and a wall. But I had no idea what was beyond that hallway. And I have curly hair that frames my face, and at times, I would have no idea what was beyond my hair. People? Rooms? A park? A window into space?
At some point, I got used to the episodes and they just became a normal part of my life. They were so hard to explain and I often felt like I was blipping into another reality. I would have visions in my mind’s eye that I quickly forgot as soon as it was over. I didn’t talk about it much because it sounded completely crazy, but at some point I mentioned it to my cousin and he nearly fell over — time traveling! It happens to him too! What he described — the deja vu, the visions, the anxiety and sweating and feeling the need to pass out — was so exactly the same to what I had been experiencing. He always called it time traveling because he thought the visions were of the future. And time traveling somehow sounded less terrifying than blipping into alternate realities or being completely crazy. So that’s what I started calling it, too.
For several years, the episodes would continue for both of us. At some point, my cousin began having tonic clonic seizures and he was diagnosis with epilepsy. He sent me links and information on his particular flavor — Temporal Lobe Epilepsy. It was disappointing and terrifying to see my time traveling episodes so perfectly described as a brain disorder. Around that time my mother had a massive stroke that destroyed half of her brain, my father died suddenly from cancer, I had rage quit my job (and lost my health insurance) and my cousin was suffering from uncontrolled seizures. It was all a little much and I couldn’t believe that I had something like epilepsy on top of it all. I was merely a periodic time traveler having a mild midlife crisis.
I tried to ignore it all as best I could, but the episodes just kept coming. And soon they began coming in clusters that would last as long as two weeks. My memory was also slowly dissolving. I was losing my longterm memories and having trouble with the immediate things, too. I began to get scared and confided in my desk-mate at work when it would happen, for fear that I was having a stroke like my mom or about to literally disappear and slip into another time and place. And then, one day it hit in a big way while I was at work. The strongest deja vu. The anxiety and dropping and feeling flush. It left me so tired and confused. I couldn’t read my emails or remember what I was doing. I thought it would be a good idea to go home sick for the rest of the day, but when I got out onto the street, I couldn’t remember where anything was. I live less than five blocks from my office, but it was like I had never seen this city before and I couldn’t remember my way around. I had been ignoring these episodes for eight years, but I couldn’t ignore them any longer.
So, I finally grit my teeth and told my regular doctor that I was having visions. I was time traveling. I was experiencing deja vu on the regular that nearly brought me to my knees. I was forgetting my life and my words and where I lived. “Sounds like temporal seizures,” she said. Next up would come a referral to a neurologist and so would begin my education in the American health system.
It took three months to get a thirty minute appointment with my first neurologist. I learned in that appointment that mentioning time traveling takes the conversation in a different direction than dizziness, deja vu, forgetfulness, anxiety, and random memories. I also learned the importance of health insurance as I was scheduled for my first EEG and MRI. He thought my symptoms could also be caused by a heart condition, but that we should get some tests to be sure.
My memory gets spotty around this point. What I recall is that I didn’t hear back about those test results and didn’t hear back from my doctor, either. Going to the hospital for an MRI and EEG and being in a neuro ward with people like my mother who had had a massive stroke was really challenging. Kind of depressing and horrifying, really. So, I was ok with with letting it go and not getting any results.
Maybe a year later, I had a physical and my regular doctor asked how things went with the neuro. I mentioned it all went quiet but that I was still time traveling. From there, I somehow ended up seeing a cardiologist. That began my descent down a two or three year rabbit hole. Lots of tests and doctor’s appointments. I went to that hospital so many times. Watched as they remodeled the lobby and moved the Starbucks. I got to see my heart moving and beating during and echocardiogram and that was cool. I had low blood pressure and a couple of tachycardias. But as a runner, I also had the cardiovascular endurance of a “super normal 15-year old female.” Pills and more pills and the order to “liberally salt” my food. Through it all, I ended up with high blood pressure and I was still time traveling.
I saw my neurologist again at some point as I became more and more concerned about my memory. I was losing my childhood and family vacations and my episodes were coming in more and more distinct clusters that left me feeling fried and unable to keep up with my work. This time he referred me to another neurologist for autonomic testing.
Autonomic testing… mild electrocution. Having little triangles burned onto my skin was worth the hour that doctor spent reviewing my symptoms. All of his tests were normal and he was the first to say epilepsy. He also recommended I stop taking the heart pills and see how I felt. (The only result was that my high blood pressure went away).
I reached out to my neurologist one more time when I began hallucinating. I woke up in the middle of the night time traveling. I had the deja vu and anxiety and the vision in my mind’s eye and I was drooling when I noticed a fake plant in my room was spontaneously changing shape. I then remembered waking up a few weeks prior seeing spiders all over my bed and pillow. Imaginary spiders and shapeshifting houseplants were a pretty clear indication to me that something was super, duper wrong with my brain. The doctor agreed to schedule me for my first 72-hour inpatient EEG and said the scheduler would reach out.
They never did. It was during the pandemic, so I tried to be patient. But after a few weeks I started making phone calls. Eventually, I found out the hospital wouldn’t schedule an EEG unless I met first with one of their epilepsy specialists. Finally, twelve years after I started time traveling, I had an appointment with an epilepsy doctor.
She diagnosis it pretty quickly: partial seizures. I had the option to start taking pills immediately or do the inpatient EEG. By this point, I was weary of medications and diagnoses, so I opted for the EEG.
I checked myself in to the hospital (during the pandemic, no less) on a Monday. I had been to this hospital dozens of times over the past four years to meet with neurologists and the cardiologist and so many tests. This time, it was all pandemicky in a slightly apocalyptic way. Arrows and plastic partitions and temperature checks and little circles to stand in. I had been here a few weeks prior for another MRI and 45-minute EEG, so I knew the routine. I eventually got to the room where I would be staying for the week but didn’t quite understand what I had gotten myself into.
They glued the leads all over my head and confined me to the bed. I had cameras watching my every move and an alarm that would blare if I got up. A nurse had to watch every time I went to the restroom, in case I had a seizure. And I couldn’t sleep. The hope was that sleep deprivation would trigger a seizure. I had books and a sketchbook and crappy tv and shockingly unhealthy hospital food for five days. I had moments of euphoria and rage and depression and boredom. I talked to myself a lot after those first few nights without sleep. I spent too much time looking at that wall. And through the little window across the room, I could see it was snowing outside.
And my IV popped out. I had one of those young nurses they were trying to train who jabbed both my arms and both my wrists unsuccessfully before I raised the flag of defeat, mentioned I was about to pass out, and asked them to stop. Every night, they stabbed me in the stomach with a drug to prevent blood clots, like the one that caused my mother’s stroke. I started to dread each time a nurse would appear in the doorway with some new, unexpected need for more blood or another IV or another injection. But in the rooms around me there were really, really sick people. Some of them screamed at night. Others were watched by family members desperate for a good update. I kept my curtain closed, grateful every moment that I was ok, actually healthy and strong and going home soon.
There was no time traveling that week. Not a single blip. Confirmation, without a shadow of a doubt, that I was having seizures would continue to allude me. My epilepsy doctor was still sure, though. Officially, for the first time since I began time traveling 12 years prior, epilepsy was put on my medical record. My doctor gave me a prescription for Keppra. It’s a pretty common epilepsy medication but it made me feel so, completely tired. The fatigue was worse than the seizures, so after 9 days and with my doctor’s permission, I stopped taking it.
It must have done something because for almost four months, I was firmly planted in the present. No time traveling. No deja vu or visions or hallucinations. I really, truly thought that this time it was over. I would never have another seizure again. Epilepsy could be stricken from my record. I was healed!
Of course, it has come back with a vengeance. I’ve spent the past week and a half having daily and nightly episodes and this time they’ve brought two new symptoms. My left hand and left leg have started going numb when it happens. And, for the past few days I have been left with a persistent, profound, ever-present feel of… something being off. It’s like a constant deja vu in the back of my mind also somehow paired with a constant jamais vu. Everything feels slightly new and unfamiliar and yet also like I’ve seen and done and experienced it all before. I tried to get another appointment with my doctor, but the soonest they can see me is in three months. So, I’ve just been trying to embrace it.
It many ways, this week it feels like I really have been transported to the future, to this life I’ve built for myself throughout my adulthood. I have a home and a career and a membership to a meditation studio down the street. I’ve felt euphoric this week as I’ve become overwhelmed with gratitude for what I have, as if being handed this complete life just now, for the very first time. I’ve also felt fear and sadness at the memories I’ve lost in just the past ten days. I was watching a show on Hulu last night but it’s like I skipped a season and have no idea how the plot got to where it is. I can only hazily make out the work I was doing for my job and last weekend is reduced to some pictures and journal entries. There is a new blender in my kitchen. A blender that I apparently bought on Amazon. I remember it now and I remember the box it came in, but until I could find the order receipt and see how new it looks, I couldn’t figure out what the charge was on my credit card. And I can’t remember going to yoga last weekend. It’s one of my only pandemic social outlets, but it’s lost to me.
These are little things, but big things. The 5-day inpatient EEG cost as much as all of my college degrees combined and each of those MRIs was ten grand. Those visits to the cardiologist and all of those tests? And the autonomic testing and other doctor’s visits over the past four years? It’s cost a lot in more than just money. I’m grateful to have health insurance and understand, more than ever, why insurance needs to be available to all people. And, I think I really am finally accepting what my cousin and google said all those years ago and what my doctor has finally put in my medical record. I have epilepsy. Time traveling has been a fun way to describe it for 12 years, but the seizures are frying my brain and I need to work with my doctor to get it under control. If you experience the deja vu and the visions and blip into alternate realities, I hope it won’t take you 12 years to get the confirmation you need.