March 26th is Purple Day, an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. It was founded by a nine-year-old named Cassidy Megan in 2008, who I am now super fortunate to call a friend, and have as a sewing model for me for the women’s garments I design and make as a hobby. She is an amazing and amazingly classy activist, as not all activists are by any means, and it is a joy to watch her in this role, from formal events to informal weekly online sessions she hosts with her Mom to help support those wanting to reach out, share, learn, whatever. Some of the achievements by this phenomenal young woman is in the Wikipedia page for Purple Day, and the Purple Day website itself are just astounding, and I am wishing her, and all others who celebrate Purple Day, whether or not they have epilepsy, the best for the day and year to come!
Myself, I’m not sure I have epilepsy. I’m not sure if that qualifies as “interestingly enough”, “oddly enough”, “curiously enough”, or some “otherwisely enough”. However, I’ve been on medication for it since I was ten, when I was struck in the back of my head by a frozen orange hockey ball from a slap shot. Some guy didn’t look during warm-ups to see me going to pick out some balls from a goal net that were there from shots on target, which removed them from use until someone picked them out. I was knocked out cold, but brought back to consciousness in the parking lot where we played, and actually played with a sore bump on my head, which I didn’t of as being anything more until that night when I had my first seizure. It was slightly violent that after some initial wild movements in bed, I would flex all my muscles and do so for hours, resulting in me being very sore the next day, and several days after that as well. You try flexing all your muscles for as long as you can, breaking occasionally if you need to, for like 4-6 hours and see how that feels! A day long or longer headache also accompanied the soreness, just to make the aching uniform throughout the body, it felt like.
In the coming weeks, months, then a few years, more seizures followed, but only in my sleep after some mentally tiring days or evenings. They weren’t predictable, probably averaging a month or so, on average, which was still a decent part of life being sore. For this, I was prescribed phenobarbital originally, even though my neurologists weren’t sure I had epilepsy. I could have had what could have been concussive side effects. The electroencephalograms (EEGs) they had me take, tests that detect electrical activity in the brain using small, metal discs (electrodes) attached to one’s scalp, weren’t conclusive, either. It didn’t look much like what they had seen of other epileptic patients. However, I had seizures, and there were seizure drugs, not limited to only certain causes of seizures, so I got prescribed seizure drugs.
When the phenobarbital didn’t work well to reduce my relatively low frequency of seizures, while causing other symptoms, my neurologists moved me to carbamazepine. That reduced it the seizures to an average of once every 2-3 months, even though they were still unpredictable, without any noticeable side effects. Further, over time, we determined I could take pretty much the minimal dosage produced and get this benefit, while taking more didn’t seem to help any. As such, we stuck with it, and I have stuck with it ever since.
These days, I might have seizures only once every year or two. However, its spectre still looms that I don’t go without the carbamazepine because in a few trials where I went without it, I either had or felt onset of those seizures, needing to wake up and really engaging my mind fast and furiously, like washing my face with really cold water, but then prolonging it like with a hot shower, self cranium massage, and such, so I don’t fall asleep again soon. But then it leaves me really tired for the next day, of course, and in less than optimal state for any high performance, whether mental or physical, for the next few days. With some general health insurance in Canada, it’s a $9.10 prevention every 3 months with no known side effects, so really, why not?
But still no idea whether it’s epilepsy.
But what do I think, then, if it’s not clear? In general, I don’t walk around thinking I have epilepsy, no. I’ve never felt like I had it, as in epilepsy being a disorder that can limit me from anything, either. Compared to those who suffer from it, which is often far more than anything I have to deal with, I almost feel like an imposter to claim it! Those nightly singular lowest dosage pills? They might as well be just a vitamin, because I take them with one different, focused vitamin each night, knowing multi-vitamins are generally a waste of money for how some counter absorption of others, among other features that render them relatively ineffective compared to how many people think they work. I just take two vitamins, basically, as far as I’m concerned.
That said, I counterbalance the contradictory thought that I do have epilepsy. I’ve just got it controlled, and am growing out of it very slowly, that it’s been decades since I’ve even thought about it as having any real impact in my life so that I don’t really have epilepsy the disorder, condition, or whatever you want to call it, but rather epilepsy the annoyance. That’s not to offend those who truly suffer from it, but it’s my situation. I can hold both contradictory thoughts and views because intelligent minds can, and I have one.
Perhaps the biggest indicator of how I don’t think I have epilepsy has been my lack of association with the cause all these decades. I just didn’t feel I could relate to those suffering the disorder. However, I’m realizing that while my perception could disagree with my reality, my behaviour doesn’t have to reflect that. I could, and should, do more to help the cause. So for this Purple Day, I will pledge to learn, participate, and contribute more to my friend Cassidy’s Purple Day cause in the next and coming years. How, I don’t have enough knowledge to detail specifics now, but I see lots of opportunities from my exposure to her work, what others have shared with her via her online support sessions, among other things. That includes getting some purple clothing, or probably making some since they’re hard to find for a guy and I can make some, because the only purple garments I have right now is a cotton T-shirt of the Louisiana State University Tigers (LSU), and one purple and one mauve dress shirt!
We’ll just have to wait and see. I’ll report back in a year.
p.s. When I get around to doing the good versions of some muslins I’ve been making for Cassidy, they’ll be purple, too! She was a model who inspired some design challenges for me with the purple inclusion criteria!