Ever since I was a teenager, I have experienced physical and sometimes mental “episodes” that I had no clue what they were or meant. But they never happened often enough for me to think about seeing a doctor. These episodes would occur randomly, maybe 2 or 3 times a year with no warning, no pattern and after a minute or two I would be fine. To the best of my memory, I can only think of a couple of times in the last 25+ years when an episode caused me to lose consciousness.
Then COVID happened.
Last July, after returning from a trip to LA, I tested positive for the COVID 19 virus. The most common way for COVID to enter a person’s body is through the respiratory system. Except, the way the virus entered my body was abnormal. The existing condition that I had, but was completely unaware of, allowed the virus to enter through my nervous system. It is rare, but not unheard of. This meant that my symptoms were also abnormal. I did not have the cold and flu-like symptoms that my boyfriend had or that most others experienced. I had body/muscle aches from hell that kept me horizontal for a few days and headaches that made me feel like my entire brain was on fire.
According to the multiple doctors I saw and spoke to, COVID was not a causing factor but a big fat trigger. The metaphorical switch that essentially “opened the flood gates” for my epilepsy, bringing on a full blown epileptic seizure that landed me in the hospital for a super pleasant overnight stay. <— P.S. Captain Obvious and Major DUH want you to know that last part was sarcasm.
Since then I have been bombarded with SO MANY questions from friends and family. I had been keeping most of the details to myself because there was always that little bit of hope that the doctors would come back and say “One time thing caused by COVID and you don’t have anything to worry about! ALL BETTER!”
Pppffftttttttt… deep down, I knew what was coming. But even after getting removed from limbo, I needed time. Time to process and adapt. I needed to cry, then cry again, then cry some more. I needed to scream and get angry so that I could snap myself back into a mode that refuses to be a victim of anything.
Now that the dust has settled, Im ready to talk. But instead of repeating myself a million-gazillion times, Im going to tell you all at once. Here is the play-by-play that I am willing to give…
A week after testing positive for COVID, I went to bed on a Friday night only to wake up a couple of hours later in the hospital. Not long after going to bed, I had a tonic-clonic seizure (also known as a Grand Mal Seizure). This is the worst kind of seizure a person can have. My body experienced every symptom in less than 2 minutes which included biting my tongue and the insides of my cheeks, loss of consciousness, convulsions that separated my collar bone, and more. I was very lucky to be in a position of laying down on a soft surface. I was also lucky to have my amazing boyfriend there to call 911 as soon as it started. But even now, almost half a year later I still don’t remember much of anything in the time between going to bed and then waking up in the hospital. I have some memory flashes of the ambulance ride and one vague memory of the EMT trying to make me laugh by repeating the word “doughnut” over and over… at least I think that was the word he kept saying. Again, memory not so good. OH, and I remember his Hitler mustache.
In the last 5 months, I’ve seen multiple doctors more times than anyone would ever want. When I first started getting tests run, I kept telling the doctors there was no history of epilepsy in my family. Other conditions that can cause seizures like Diabetes and Dementia? Yup. But not epilepsy. It wasn’t until a couple months later when my mother informed me that there is, in fact, a history of epilepsy on her side of the family. Once I told this to my primary doctor, and after taking into consideration my Grand-Mal seizure, previous episodes, current episodes and symptoms that decided to stick around, she basically told me it was not just likely that I have epilepsy, but probable. However, without my EEG results and speaking directly to the neurologist, she could not give me any official diagnosis.
On November 14, 2022, I was finally able to see the results of all the tests and I was given an official diagnoses from Emory Brain Clinic. I am 38 years old and I have Epilepsy.
Even if you don’t know me that well, you probably still know that I am typically a physically active person if you pay even the slightest attention. I was a sponsored yogi with 9 different companies that I represented for yoga products. But lately, on some days, just getting up from the couch would make me light headed and stumble. That pretty much ended any routines of “getting upside down” or holding myself completely balanced on one set of tippy toes. Now, I constantly feel tired. Having to sit down and take a few breaths every 20 to 30 mins is exhausting in a way I never thought was possible.
I am also a very passionate photographer (I WILL NEVER STOP) that has worked with bright, flashing lights on a daily basis for years.
None of that will ever be the same as it once was. But I will NOT stop doing any of it. I have medications that are helping me with getting back into my yoga practice. I am making appropriate changes to my photography (different equipment such as lights that stay on vs. flash with the shutter). These are all the things I love and can continue to love and perform with the right changes.
What you may not know is that I am also someone who LOVES her brain and loves to self educate. The one thing that I have been having the hardest time adjusting to is the obvious cognitive decline. I have studied the brain for years in efforts to understand different behaviors. I like to read about different ways the brain can process things according to lifestyle, diet, etc. I’ve read up on the different effects of different substance abuses such as alcohol and drugs, and even sugar intake. I’ve studied the biological and psychological differences between a woman’s brain and a man’s brain. I’ve followed and researched the work of Dan and Tana Amen of Amen Clinics and read multiple books by each of them, as well as others that are also leaders in their field.
I guess you can say that my recent physical limitations do not bother me as much as the mental limitations. I don’t like feeling stupid. I can’t process information as quickly and I can’t remember simple words. Just the other day I was staring at a big beautiful oak tree and ended up verbally assaulting its description as “the really big oxygen producing nature stick thingy” because I couldn’t think of the word “TREE”.
Trust when I say that I could give you many more examples that would have you laughing so hard, your eyeballs would be leaking. And I often make fun of myself and find it hilarious even when others don’t. But I’ll leave those for future writings of entertainment.
The cognitive decline I am experience is demeaning, depressing and often makes me angry. There is so much more to Epilepsy than just the risk of having a seizure. There is no cure for Epilepsy. There is only managing and controlling the symptoms with medications. Getting diagnosed as an adult is harder too. Many children diagnosed with a form of epilepsy at a very early age eventually grow out of it and no longer need medication. That is not the case with adults.
So whether I like it or not, it is what it is.
I have epilepsy.
It’s here to stay… BUT SO AM I!
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