Adulting for Epilepsy

Dan | 10:19

play
Listen to Story

"What I'm starting to understand pretty clearly is that I need to embrace adulthood."

Epilepsy Auras Diet Alcohol Caffeine Lifestyle Dogs Pets

Story Transcript

Interestingly, my backstory with epilepsy is that throughout my early twenties I was experiencing something that I've now learned at 35. What they call auras, a sort of sensory reaction, sometimes visual, sometimes a sense of smell, sometimes a little bit of sound. Or I'm sure, quite a mix of other things that other folks experience. I have been experiencing those since in my early twenties and had gone to doctors throughout my twenties and asked them questions about it. And had never really gotten a satisfactory response. But when I was about 29 or 30, I believe 30, I dare I say, woke up one night and I woke up to my girlfriend at the time screaming and really intense sort of confusion and immediately people that I didn't recognize or know sort of pinning me to the ground. So it was a very 1984 kind of feeling. I tried to fight these people that were in my bedroom and in my living room. I had at the time dogs barking and didn't really understand what was happening. Then I woke up in the emergency room a couple hours later, and it was explained to me that I had a full body seizure, something that I had never had before and I didn't really understand. And it was very, very painful and my body was sore for a number of days, but beyond my body being sort of sore because my whole body apparently had contracted for a short period of time, the sensory and sort of memory reaction of that happening was way, way scarier and way different than anything I could have possibly imagined. That was about five years ago. I've had now, unfortunately, about four other seizures since that time, so I'm exactly one a year, but something close to that and none of them have been as physically or emotionally painful as that one was. But it was a weird entry into this world of being an epileptic. That I didn't realize was a world I was entering and certainly wasn't a world that I understood.

Throughout the next few years, I had similar experiences while going to doctors pretty regularly and sort of making the assumption that doctors would, at a certain point, with enough evidence, be able to hand me a solution. I certainly did a lot of Internet research, a lot of Googling, a lot of WebMD or Mayo Clinic reading. And over time I realized that not only does the medical community not have a really great understanding of what epilepsy is, but, that our medical community overall has a pretty bad understanding of how to deal with and how to handle patients that may have emotional sensitivities or confusion or a lack of understanding around complicated conditions. Maybe is the best way to say it, around conditions that there are no easy answers to. So I would go in and folks would say, Oh, boy, this is a weird one, or Well, yeah, we don't really know the answer to this. And instead of anybody sort of reacting and supporting in the fact that they didn't know the answer, I would get kind of nothing from folks and then go home and worry a little bit and try to pretend like everything was normal. And that worked for really for the first two or three years until I realized that it was a consistent, relatively consistent pattern and that despite the medications that I was on I was likely to be looking at, if not a big chunk of time, then perhaps a lifetime of having nearly or, occasional seizures that both took away my driver's license, took away physically my ability to do much for three or four or five days at a time after they occurred, and really threw my day to day life into kind of a strange and scary chaos. So once I settled into that understanding that the medical community didn't have a whole lot to offer me, and that despite my friends and my family support that nobody else really knew what to do, I had to come up with new understandings and new approaches and rhythms to figuring out exactly how my life could feel normal and sensible and easy to deal with at a relatively young age, as somebody that experienced this for the first time when they were 29 or 30 and quite fun and urban and exciting. It was a really strange thing, as a young, seemingly indestructible person to realize pretty quickly that you're very destructible. So I reached out for sort of all the things that I possibly could. I read that young people, people largely in their teens and below had had great success with ketogenic diets. So I switched my diet to low carb, at least Atkins, if not a fully ketogenic style diet. And the upside of that, at least, is that I lost a few pounds and I look handsomer. I'm not sure that has helped anything related to my epilepsy, but it's certainly trimmed my belt by it by an inch or two, which is great. And I also started to rely on my friends and family, telling people around me more and more what was going on with me trying to shed any shame about what was happening and make sure that folks, that we're going to see me on a regular basis, understood and were able to react to the problems that I was having.

But largely the thing that I realized through research, not necessarily medical advice but mostly through research about medical findings, was that I needed to drastically reduce my fun party lifestyle that I needed to reduce my consumption of alcohol, my consumption of caffeine and essentially anything in my lifestyle that would really change the way that my body was operating on a regular basis. So don't get dehydrated. Don't get drunk or too drunk at least, and don't stay up all night. Don't misbehave. Don't put your body in a position that stretches it beyond its normal boundaries. And throughout my years, of probably my early thirties, say, 31 or 32 when I was really denying that I had to deal with this up until 32 or 33 when I started to make amends and really think about this seriously. So now in my 35th year and approaching my 36, I've made a lot of pretty substantial lifestyle changes, some of them fun and some of them wonderful and worthwhile. Others that I wish maybe weren't the case. And what I'm starting to understand pretty clearly is that I need to embrace adulthood in a way. I need to be a person that's comfortable with going to bed around 10 or 11 p.m. Getting that full seven at least, or maybe eight hours of sleep, if I'm lucky. I need to be a person that has one or two drinks on a night out with friends instead of the honestly eight or so that I might have been having as a younger person. And I need to be a person that's comfortable with allowing those routines in my life to be kind of consistent. And I need to find things in my life that encourage that consistency. One of the biggest pieces of consistency in my life has been my wonderful dog. My, I would say puppy, but she's getting a bit older, Trixie, who is a Australian Cattle Dog and Labrador Retriever, I think, mix. I've had her for now over six years. She is in, presumably her eighth or maybe even ninth year. And while she can be quite annoying from time to time, she is also an absolute delight because she really is my partner in good behavior, bad behavior sometimes too. But certainly she keeps me sleep-wise incredibly regular. Wakes me up at the crack of dawn every day, not just Monday through Friday but Saturdays and Sundays as well, and is a constant reinforcement of the more mature, more adult behavior that I truly need to be embracing at this point in my life. I wish it wasn't the case. I wish I had a dog that could pee on the carpet and I could sleep in and forget about. But it is nice to know that if this is a change that I need to make and something that is incredibly important to my health, that I can do that at the same time as helping and embracing a puppy that I absolutely love. So at this point, begrudgingly, it is quite the win-win, and I think having a pet like that can really support a change that people might need to make similar to mine.

X