It is great to see Coach Mike Hart out and about just a few days after a scary situation on the sideline. I share much of the sentiment on this message board post and the thread below it. I also share the undesirable attribute with Mike Hart of having a one off seizure in adulthood (I was in my mid 20s, but mine was not on a national broadcast with over four million people watching). It was my only seizure for a few years, but in 2020 I had another. It elevated my condition to the technical definition of epilepsy, and got me a prescription that I will take every two times daily by mouth indefinitely. 

I wanted to write this the moment I learned that his collapse on the sideline was a seizure, which was my guess when I saw him carted off seemingly in pretty good shape, looking healthy if not a little shaken up mentally. I should start by saying I am not a neurologist, so don't take any of what I say here as medical advise, but given my experience, and given how people in my life (including me) reacted to my situation, I wanted to put this in a place where people would see it. I'll first share my story, in case it resonates with anyone who may be going through it now. I don't know how much traction this will get here, but certainly there are readers here beyond me living with epilepsy. There may well be someone newly diagnosed. Even more certain is that many of you will know someone who has gone through something like this, either as an observer or a patient.

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My seizures were different than Mike Hart's. They both occurred while I was sleeping, which was terrifying for my partner (then girlfriend and now wife), who is the only person to see me have one. Both occurred in the same manner -- in bed at home shortly after falling asleep as I transitioned into deeper sleep.

The seizure itself is almost a non-event for the patient. You are aware of your existence, and then you are not. It lasts however long it lasts, but then you enter a Netherland of consciousness that is hard to explain. For me, after my first seizure, my first memory is being wet in a cramped elevator strapped to a wheelchair. My partner had doused me with water to try to get me to breath again because I was turning blue after about a minute of convulsions. My leg hurt because I had shaken myself off the mattress and onto the wooden edge of our bed frame and continued to flop for about a minute. My tongue was swollen and bleeding because I had bitten down on a good sized portion of it for that entire minute.

I remember being loaded into an ambulance, the cold night air, and feeling safe when I saw my partner getting into the ambulance after me. I remember a couple college kids on the sidewalk watching this happen. I lived in a college town. I remember the paramedics asking me questions in what could only be described as an alien language of a seafaring people from Andromeda that was utterly unintelligible to me. I remember looking at my partner in terror looking for her to save me; although, I couldn't recall her name when asked. I remember starting to understand the questions but not knowing the answer. I recall a deep rage of frustration at that state of affairs. I didn't know my name, her name, the day, or much at all, really. I was able to make memories though, clearly. I remember the paramedic, who is a handsome and tall man that I saw in a grocery store a few days later and thanked deeply. 

This state of confusion left kind of all at once. The first question I answered correctly was the president's name -- "Obama, but soon to be Clinton," I answered confidently (lol). It was around 1 AM when I got to the hospital. I was back home by 6 AM. I felt normal beyond my bruised leg and mangled tongue. I slept until the afternoon. I felt a weird depression for a few days about how I had lost control over my life. My driver's license was revoked. I was a graduate student, so it wasn't the end of the world, but this was very much not the case for my second seizure, which made my 30 minute commute to work rather challenging. I was able to work remotely, but in a reduced capacity for a couple months, and on days I needed to get to work, my partner drove me early with enough time for her to get to her own job, and then I worked a long ass day so she could come get me after she finished work. She is my hero, or just really likes me making money.

It is both.

 

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The part I wanted to really share in this diary is this. People don't know what the hell to do around someone who is having a seizure, so if you ever see it happen, at a minimum, do this:

• Secure them on their side
• Don't put your hand in their mouth, you might get your fingers chomped, and they will not choke on their tongue, but they may vomit and choke on that.
• Put something soft under their head -- if you don't have anything soft, put them on your thigh while you sit on the ground and secure them. 
• Stay with them until well after the seizure stops.
• Talk to them informatively in simple language when they come back to consciousness. "You had a seizure. You are OK. I am with you."
• Be patient after the seizure is over. It may take some time for them to recover.
• Do not leave them until either they are clearly conscious and able to make decisions for themselves or they are under the supervision of a medical professional or another trusted person in their life. 
• Some people with more frequent seizures than me will disagree on this point, but you should call 911. My partner did both times, and the second time I was able to still avoid the expensive ambulance ride after explaining to the EMTs that I was clearly aware of what happened and that I was going to have my partner drive me to the ER immediately.
• Check up on them frequently in the following days. They will feel normal physically, but they will potentially fall into a pretty severe depressive state. I had never dealt with depression before my first seizure, and it was intense for a few days after. I was told my a few doctors that it is common. 
• Offer to drive them if they lose their license. Our country is terrible at public transit, and even though I live in the footprint of one of the better transit systems in the county, my life was altered quite a bit.
• If you oversee a person at work who has a seizure, please give them space to recover, and be patient and accommodating with their recovery. Talk with them and make a plan that works for both them and you.  

The other part I wanted to share here is that epilepsy is challenging to live with and also to know someone who has it. There is a social pressure to be "normal" after. Both the patients and their friends/family/colleagues will feel this pressure, but things are certainly not normal at least for a while. I suddenly couldn't drive. I was suddenly depressed for the first time in my life. I was suddenly unsure if I had control over my body, and I was fearful that it would happen again in a more precarious place than my bed.

The hardest part was seeing how traumatic it was for my partner. She thought I was dying. To this day, she feels uncomfortable falling asleep before me. Years later now, she doesn't like me to go on trips without her. 

The debate this week on this blog and on the associated podcasts over whether or not Mike Hart's seizure affected the team was disheartening. It abso-fucking-lutely did. They momentarily thought their coach died in front of them, and even after people who would know -- e.g., their numerous team doctors -- told them that he was OK, they still couldn't unsee what they saw: their brains had credibly stored a short term memory of their coach dying in front of them, and then shortly thereafter they had to perform in front of four million viewers on TV, a stadium full of people, and their teammates, who were all feeling the same thing. 

I was told by my neurologist -- no less than a former head of neurology research at UCSF -- that 10% of all people will have a seizure at least once in their life. This number continues to astound me. She convinced me that it was normal, but it didn't feel normal. I felt alone. It felt unsafe to be alone.

My brain told me that if 10% of all people have seizures at least once, then surely more people would talk about it, but there is a strong stigma, and so that social pressure to be back to "normal" quickly shames people with epilepsy into a culture of management  and of hiding of their condition. I take my medicine every day, at 11 AM and 11 PM. I take it at 11 AM often in front of colleagues. I took it once while given a presentation at a conference. I don't mean to suggest that I walk around with a EPILEPTIC pin on my lapel, but I do mean to suggest that you know someone who has had a seizure, and you very well might not know about it. 

Seizures are a part of my life, and they are a part of Mike Hart's now. I hope this post helps it be a part of all of your lives too.