The one day that I did forget my morning dose, I didn’t actually know it. There was no fear or dread that day, I simply woke up covered in dirt and gravel as the seizure came on while we were playing softball. There have been other days when I did realize I hadn’t taken my dose, but I caught it early enough during the day that it was still far enough away from my next dose that I could take the pills and be alright. The first time this happened, I experienced panic, and quickly searched online how long ahead of my next dose I could take my pills.

But beyond that, I’ve never had any kind of panic, dread, or worry about missing a dose when I realized I missed it. The paranoia comes in when I constantly check my daily pill case to make sure I did take my first dose of the day.

And this is where I have to acknowledge my privilege when it comes to epilepsy. I’m a member of a discord with a group of others diagnosed with epilepsy, and they talk a lot about their constant seizures, sometimes multiple in one day, or surgeries to try to help with their condition, or all the side effects they experience.

Sure, I have some side effects from my medication. Mostly they come in the form of being tired more often and needing more sleep, and sometimes my mental state is affected. There have been times recently that I’ve experienced some interictal-related aphasia. But in general my “normal state of being” doesn’t seem any different to me than it was before November 2019¹. My seizures are under control, with the last one coming because I was distracted and missed a dose of my medication.

But there are still so many things that I experience that aren’t physical or directly related to seizures that many others with epilepsy experience. I imagine one of those things is a sense of pressure constantly building the longer I go without a seizure. Did you know that as I write this, I’m 528 days seizure-free? That’s 1 year, and approximately 5 months.

There is a lingering fear, for the lack of a better word, in the back of my head that any day now I will have another seizure to break the streak. The longest streak I have had to date since being diagnosed was 794 days (just over 2 years). But it was broken by something as stupid as missing a dose of my meds. So yes, there is this pressure there to keep up with my medication, knowing that the next seizure is potentially around the corner.

The paradox with this is that I would also feel a sense of relief if that happened. Maybe it would last a few minutes, and then I would go back to being dejected about my seizure-free streak being broken. But there’s that short window of time where the pressure is released, and I can stop living in fear of the next seizure.

It’s a strange thought and feeling to have in parallel with the desire to NOT have a seizure.

[1]: If you want to know how normal I feel, I just realized while writing this that I passed the 5-year mark since my first seizure: November 9th, 2019.

In short, I need a series of deadlines. I don’t claim to work best under pressure, but I am certainly an expert in procrastination if I don’t have a definite goal to work toward. Case in point, rather than continuing to work on my essays, I have been scouring various sources to come up with some sort of project timeline.

And so I have come up with a framework. A popular project timeline out there is the “12 Week Year”, espoused in the book of the same name by Brian P. Moran and Michael Lennington. I tried to read about it and glean some insight into how I might make it work for me, but all of the posts about it focus heavily on the book and everything felt like a gimmick.² Unfortunately that’s the case for a lot of productivity “hacks”. I buckled down Sunday night and wrote up a first draft of my timeline, and refined it yesterday during my lunch break. It’ll be at the end of the article.

One of the problems with my first draft of the timeline was that it lacked structure, and in some places was too specific. That might not make a lot of sense but it didn’t allow for flexibility. What I like about my plan below is that there is room for flexibility; each 3-week section is organized as a specific part of the process (organization, creation, then 6 weeks for review). If there are any setbacks, and I’m sure there will be, I can shift things around as-needed. There are some things — such as the idea of getting a beta reader — that I recognize should be further up, but that part of the process also isn’t strictly necessary in these 12 weeks.

In actuality, I don’t really need to complete the entire thing at the end of 12 weeks. This plan is to keep me moving forward. Without any structure, or a deadline, I might leave it as something I’ll get to when I get to it. With this plan, I at least have a goal date to hit.³

I liked this so much I implemented a similar plan for a weight loss goal. It’s a little more loose but includes specific check-in points along the way. The first week is about establishing a base line weight and picking out goals, organizing the plan, etc. After that there’s not much to do except keep going with what I’m doing and making any necessary adjustments.

Anyway I hope that this example of a 12-week plan for a project is helpful to you in organizing your own project. I also hope that this doesn’t come across as gimicky in any way — that’s what turned me off of a few things and almost halted my planning process. Let me know what you think of my plan!

1. I have already written some of these essays! You can read them in my profile. But a lot of them are either not going to be used, and in some cases re-written (or heavily revised).
2. This book has been turned into a blog that is trying to sell you things. Gimmick. Keep in mind the book was published in 2009.
3. As of this writing, October 15th.

Specifically the outline of his (her?) project, structuring it into a “9 week year”.¹ I am working on a project myself, to create an essay anthology about my experience with epilepsy. My goal — a bit lofty — is to publish it as a book. It would be nice to send it to a capital-P Publisher, but self-publishing is easy enough as an eBook and print-on-demand services. Either way — I’d like to see this as a physical, soft-cover book.²

Unfortunately I am also very disorganized. I have waffled between writing new essays, reviewing older essays, and brainstorming different topics. I don’t have a structured plan for working on this thing, so the timeline for finishing it is “whenever”. Or, ¯\(ツ)/¯

So, I very clearly need to come up with a reasonable timeline to get something done. The idealist in me would aim for a general “end of 2023” but I should probably start by determining how long each step of the way will take, and work from there. I suspect that will take me into early 2024, which is fine. I don’t want to rush anything.

It’s an important project for me, and I want to get it right. This isn’t some sort of blog post (although, ironically, some of the essays will be taken from blog posts), it’s a story of my life in the last 4 years. I really should get that right.

Before I work on the next essay, then, I will come up with a timeline. That’s goal number 1.

[1] I tried searching to see if this was a “thing”, but just got results about pregnancy and converting weeks into days or whatever. Not very helpful.

[2]I do not like hardcover books.

It’s around 7:15 am and I’m out walking my dog before going to work. It rained the day before, and again overnight, so everything is wet. I see some other people walking their own dogs, but for the most part, the roads are empty. Squirrels are running around and birds are chirping and cawing. Otherwise — it’s calm.

I’m reminded of a campground the morning after a rainfall. Sure, when it’s raining, it’s disappointing (that’s a day “lost” from your vacation), but you figure out something to do. Sometimes you can sit outside under the canopy and play cards or travel board games, sometimes you do the same inside. We played Crazy Eights or Spoons when we had the cards out. For the life of me, I can’t remember how you play Spoons, except that it involves grabbing spoons from the middle of the table. There aren’t enough spoons for everybody, sort of like musical chairs.

But the morning after the rain — people are still lazing in their sleeping bags, keen to stay dry. That’s what it felt like this morning. Maybe it’s because our neighbourhood has big, old trees, the kind you tend to see in campgrounds. The kind that gets knocked over by wind storms. Either way, no one is rushing to get out the door, except maybe me.

It takes a perfect confluence of elements to create this specific feeling of calmness in the morning. There’s a calmness in a sunny summer morning but it’s not quite the same as the feeling after a rainfall. Sometimes it seems like that feeling can’t be recreated.

I enjoy it while it lasts.

This question popped into my head recently, along with an immediate answer. I can think of one movie I would be okay with as my only movie to watch, ever. The rest of Hollywood can disappear, but this one movie can stay. But then another movie popped into my head, and another. I have good reasons for all of them. So of course, I cheated with my answer.

Return of the Jedi

This is definitely not the popular vote for people’s favourite Star Wars movie, and it’s certainly not the best Star Wars movie. I fully admit that — but it is well-crafted, and delivers on the promise of being a fun science fiction/space opera film. It also has what I consider to be THE BEST space battle of all the Star Wars movies — perhaps even of all films that come to mind. The closest a Star Wars film has come, at least, is the opening rescue of Chancellor Palpatine in Revenge of the Sith. But you’re not going to convince me that the full fleet-on-fleet battle over Endor can be topped.

Growing up this was probably my favourite Star Wars movie too. Not only did it have all the cool action, but it looked good visually — I could tell A New Hope was an old movie, and Empire Strikes Back was better, but still looked dated. Plus, if I remember right, I probably only really loved the AT-ATs on Hoth.

The final battle between Luke Skywalker and Darth Vader was great to watch, but I think the lightsaber duel in ROTJ is much better. It’s punctuated well with the ground battle on Endor and the space battle going on outside the Death Star. Oh, and about that Death Star? It looks cool, even though it’s got a quarter left to go. Let’s not worry about why the Empire thought it was a good idea to build another one.

But then, I think about another movie.

Back to the Future

This is a movie I watch almost every year on Christmas Eve. I know I can’t be the only person with a “Christmas” movie — a movie that they watch every year. I’ve heard of at least one person who chooses The Wrath of Khan, and another The Undiscovered Country.

Fine choices, but they’re a little too cerebral for Christmas Eve. For a few misguided years in the mid-to-late 2000’s I watched The 40-Year-Old Virgin but I eventually came to my senses and returned to BTTF.

It’s a near-perfect movie. It has comedy, drama, and action — more comedy than any of those Star Wars movies. It has time travel! Well-defined time travel (until it gets muddied in parts II and III, at least), with hard and fast rules.

We get to see a teenager see what his parents were really like when they were teenagers — surely, they didn’t have to deal with the same problems you do. It’s different now. Except it’s not! The teenagers act pretty much the same in the 50s as they did in the 80s, just with different fashion styles and pop culture touchpoints.

It gets even better when you realize 30 years is NOT that long a time difference. It only seems that way when you’re a kid. For instance — forgive me while I bring up Star Wars again — when the Star Wars Special Editions came out in 1997, it had only been 20 years since the release of the original Star Wars. To me, it really felt like 1977 was ages ago. I also can’t help bringing up all of the movies in the 90s based on TV shows from the 60s — hey, that’s a 30-year difference too…

At the end of the day, if I’m willing to watch this movie every year at Christmas, despite knowing all of the ins and outs of the movie (including all the easter eggs and trivia notes — trust me, I’ve read about all of them) — then surely, I could watch this movie and this movie alone for the rest of time.

But then…

The Great Muppet Caper

This generally unheralded Muppet movie from 1981 is one of my favourite comedies, ever. That’s no exaggeration. This movie is tonally different than the other two I mentioned, with only two things possibly linking them together: all three films are from the 80s, and they contain some sort of action sequence. Calling the action sequence in TGMC might be a bit of a stretch, but I’ll count it.

One of the great things that this movie does is have the human actors play everything straight against the Muppets. At the beginning of the film, Kermit and Fozzie introduce themselves as brothers to a newspaper editor, and it’s totally accepted.

Miss Piggy tries to become a model, and eventually, Charles Grodin falls in love with her. It’s interactions like these that make you forget you’re watching a bunch of strange puppets parade around the screen (which, I guess, is also what makes Yoda work so well in ESB/ROTJ).

I can hear almost every musical number in my head, with the opening “Hey a Movie!” being the one that is the clearest. It has what is probably my favourite joke and one I try to re-use in as many places appropriately as possible: “Boy if that’s the Happiness Hotel I’d hate to see what the sad one looks like.” A close second might be “Is that a bear?” “No, that’s a frog. Bears wear hats.” But that doesn’t come up very often.

To top it off the film is filled with all sorts of cameos: Peter Ustinov, John Cleese, and even Oscar the Grouch! There are probably others, but being 1981, I probably do not recognize many of them. Just one more cameo: did you know Columbo is in this movie?

Coming into writing this piece I was expecting to remain undecided between the three films, but I think I’ve argued my way into selecting The Great Muppet Caper.

So, what is your choice? What movie do you keep while sacrificing all others?

One Movie Survives was originally published in Bouncin’ and Behavin’ Blogs on Medium, where people are continuing the conversation by highlighting and responding to this story.

Throughout 2022 I was doing a great job at both, to the point that I improved the shape of my teeth and gums at my last dentist appointment. Occasionally I would skip one or the other (or both), but because I had worked to build up the habit, it wasn’t a big deal to skip just one night.

But at some point, in January — probably when Vanessa and I were staying with her parents for the month — I got lazy. One night turned into two, which turned into three, which turned into several. It started innocently with brushing. I gave that up, apparently trying to save time by flossing only. But suddenly I wasn’t flossing at night either. I had taken one too many breaks.

It’s been this way until the beginning of April, maybe the end of March (I’ve only been tracking since April 1st this year). There have been a couple of other small habits I’ve dropped, but this is probably the smallest-yet-most-significant little thing that is just as easy to skip as it is to just do it.

That’s something I’ve been thinking about over the last couple of weeks. Small habits — like flossing — seem extremely easy to pick up at face value. But if you’re trying to turn it into a daily habit, it’s incredibly easy to put up a mental block and it quickly turns into a monumental task. Suddenly, you are performing all sorts of mental gymnastics just to convince yourself to just floss your darn teeth! It’s not that hard.

To get myself in the habit again, I started tracking in my journal every time I flossed before bed. There’s no punishment, and no reward, simply a box I’m filling in on my calendar every day I complete this tiny task. But what if I told you there actually is a reward?

You probably think I’m exaggerating, and you’d be right! The reward is psychological; I find that when I get going on a streak with something I like to keep the streak going. I think this is common, and the most famous anecdotal example is Jerry Seinfeld’s “Seinfeld Strategy”.

It works for me, and the best example I can point to in my life is how long it’s been since I stopped drinking: over 1200 days (about 3 and a half years). I continue to choose not to drink for a variety of reasons and one of those reasons is that I don’t want to break the chain.

There have been a few times in the last few weeks when I almost succumbed to temptation. Thoughts in my head suggested that it’s OK to skip flossing tonight — you’re tired, what’s one day? But I decided to ignore those seductive thoughts and powered through anyway and kept my flossing streak alive. That’s one of the little tools I’ve kept in the back of my mind to keep up with regular flossing, and it is easily summed up by Nike’s slogan: Just Do It.

Every time I think to myself “I don’t feel like doing it today”, I immediately tell myself “No, I’m going to do it anyway.” There must be a good reason to NOT do it, otherwise, why shouldn’t I? Flossing takes what…2 minutes, maximum?

It’s not a labour-intensive thing. Similarly, I log my food intake every day, and there have been some days where I thought about not doing it — the only reason being “I don’t feel like it”. So, I pushed through and logged my food on those days.

It takes a little bit of willpower but so far, I’m doing it. Every time I floss, or log food, or brush my teeth, it’s another part of the streak. And I’m one day closer to successfully forming a daily habit and then can stop tracking my progress. As for bigger habits? I’m not quite there yet, but I hope that these little steps will add up to continued success with loftier goals.

I talk about my progress with epilepsy a lot, so I feel a little like I don’t have anything new to say. To illustrate that a little better, when starting this draft, I began by creating bullet points. As I write this paragraph, I have two items:

• Two years seizure free
• Full journey: 3 years, 5 months

That’s not a lot to go on. So, as I come back to this a day later, I added one more bullet point: what if I talked about the positive outcomes of my epilepsy diagnosis? Whenever I write about epilepsy I tend to focus on the negatives — my struggles — but I don’t really think about the good things that came out of it.

One of the most trivial positive outcomes that come to mind is that I am now a bona fide home run hitter in softball. Now, this has nothing whatsoever to do with how my brain is affected by random electrical impulses.

Rather, it is a direct result of my series of seizures in early 2020 that seriously hurt my shoulder. I should have gone to a physiotherapist soon after the hindering pain I experienced in my left shoulder, but it was the height of COVID lockdowns. If I remember correctly, physio offices were among those shutdown.

My shoulder got a little better in the months leading up to the start of the softball season (delayed that year until late summer, instead of the usual May start date). But it was not healed enough that I could swing the bat in the same way as I was used to.

It turns out that I was swinging the bat “wrong” — sure, I could hit the ball well, and often to the opposite field, but given that it hurt my shoulder quite a bit to swing the bat, I was clearly swinging with my arms rather than using my hips for power.

I took to re-learning how to swing. But instead of trying to adapt my swing to accommodate my shoulder, and likely weakening my ability to hit, I learned to adopt a “proper” swing using my hips for power.

It wasn’t an overnight change; because we were waiting for our league to start, we held several practices with teammates and with friends from other teams. I got a lot of tips from players who were home run hitters, and with practice, I developed my new swing.

It took another season until I really started hitting home runs. It started with going to physio in 2021. Through the course of several weeks from March to August, I worked on my shoulder to regain my expected range of motion. In the 2021 regular season, I hit 11 home runs (including a grand slam in a game when I hit 2 home runs and recorded 8 RBI) and then another 3 in the playoffs.

I didn’t track my statistics in 2022 but I know I hit fewer than that by far — although a memorable home run for me was the last game of the Fall Ball season when I hit a lead-off home run to start the game — pulling it right down the left field line, something I don’t normally do.

Those seizures in 2020 — and resulting shoulder injuries — gave me a newfound appreciation for physiotherapy in general. Previously I would have never considered it — I was young, and I could recover on my own. But this shoulder pain was something else; I couldn’t reach for things on the top shelf at a grocery store without my arm snapping back.

Physiotherapy was the answer, and it worked so well for me that I went back after I slid into first base in the 2022 season and banged up my other shoulder. I will forever encourage people to find a good physiotherapist to help recover from injury.

Another plus: we got a cable box in the bedroom for our TV! OK, I kid a little at that one. We already had a TV in the room, with a Chromecast & Apple TV box hooked up to it. But when I started getting seizures at night Vanessa didn’t want to go to sleep until I had; so she started watching movies more regularly.

We added the extra cable box in the bedroom so she could watch live TV as well. These days, she’s not completely over it but lately, we’ve been going to sleep at the same time (sometimes, her before me!). But it’s nice to have the ability to watch live TV in the bedroom.

I also consider my vigilance about my mental health to be a good thing, too. I point to my medication as the number one thing that messes with my head, but I had never done much self-reflection before my diagnosis.

When I learned of the extreme side effects of my medication, I thought it would be smart to keep tabs on my mood (for a time, I used the app “Daylio” to note how I was feeling). Since June of 2022, I have been writing daily in a journal — although that is also part of my efforts to write more regularly.

The very fact that I can think of positive outcomes out of all this is itself a positive outcome! It’s very easy to only look at the downside, and I know that a lot of people in the epilepsy community do that.

But I have also found a group of individuals on a Discord server to connect with, and we are all able to laugh at our situations despite having to deal with different aspects of the condition every day. I think this is extremely important, and I guess if you live with something long enough it gets easier to find things to laugh about.

Having epilepsy is not a great thing, at all, and I would not wish it on anyone else. But I appreciate the positive outcomes — as trivial as they may be — and I don’t think I would change very much in the last 40+ months.

I manage a small team of 4 employees (now down to 3) for a regional radio market hub in the Traffic department — no, not THAT kind of traffic; we schedule the commercials that sales reps sell, which are then written and produced by the Creative department.

We are essentially in the business of managing inventory, which feels a little weird when you consider our inventory is “air”. We are the gatekeepers to that inventory and take care of adding and removing commercials (or as we call them, spots). It’s a specialized job in radio, one that has rare job security.

Even though we don’t generate the revenue for the radio stations, we are directly responsible for ensuring that the revenue stays in the building and is reported accurately. This can be a tough job sometimes, and we had our toughest test in March 2020 — when the World Health Organization declared a worldwide pandemic.

February

We had been hearing stories about COVID-19 for weeks. At the time news outlets were still referring to it as a “novel coronavirus”; I find it a little strange that we moved on from “corona” memes and refer to it only as COVID these days.

In January, in Canada, we still felt like this wasn’t going to come across the pond and be a big deal for us. We dealt with SARS in the early 2000s, but it was contained to Toronto and Southern Ontario. Surely, we would be fine.

In February our company issued the edict that we should make sure to bring our corporate laptops home at the end of each day in case we are told not to come into the office. My employees asked incredulously if they really needed to bring their laptops home each night. COVID wasn’t going to affect us, remember? I had to tell them that yes, according to our disaster plan, they absolutely needed to bring their laptops home every night.

They begrudgingly lugged their laptops back and forth to work each day, thinking that this step was a completely unnecessary burden.

March

Everything was flowing like normal: we’d come in each day, reconcile our commercial logs, enter orders, edit our logs, file paper copies of our orders…normal, pre-pandemic stuff. We didn’t know what was coming in two weeks’ time.

Over the weekend of March 14–15, we got notices from upper management that we were officially working from home. On Monday, March 16th, our department was absolutely scrambling to respond to a multitude of advertisers cancelling their ad campaigns — pulling off the current day and the rest of the week.

Suddenly our logs were full of holes — not that March is typically a very busy month in advertising, but that’s when campaigns start to heat up leading into Spring. Still, losing thousands of dollars of revenue in a matter of minutes is amazing (and terrifying) to see.

For some reason I thought it was important for me to go into the office for a few hours to print out some orders I entered in the prior week from home; at this time, we were still printing physical copies of orders and filing them. We even filed away 2019 orders in the basement to keep for seven years. That’s a victim of the pandemic that I am glad to see die: paper copies of everything.

But I remember March 16th for something else — in the afternoon because of all the stress of the morning, I had another seizure (my fourth of the year, and fifth overall). So not only did my team and I must deal with the Morning From Hell I had to leave them in the lurch because I was essentially incapacitated the rest of the day. I know there was nothing I could have done to prevent a seizure, but that doesn’t mean I can’t also feel bad for my team.

Adjustment Period

It took quite a while for everyone to adjust to the “new normal”. While I had a plethora of monitors at home to use (my wife had recently bought me a really nice 27-inch monitor that gives me ALL the room to work), my team at different points went into the office on their own accord to grab monitors and keyboards from their desks so they can work properly.

I think technically they weren’t supposed to do that, but eventually the company made arrangements for people to “officially” obtain the equipment necessary to work from home, so all’s well that ends well. And even I asked to grab an office chair and bring it home because I had some back pain issues — so everyone had what they needed.

It’s funny to think about the trouble the team had adjusting to working from home as we are returning to the office in a hybrid format. The idea of working from home was, previously, a nightmare. Now it’s the opposite, and I don’t blame them! In our job, there really is no need to be in the office.

Occasionally there is a need to talk to people face-to-face (something that applies more to me as a manager than my team), but for the most part, productivity increases leaps and bounds from home compared to being in the office. And no commute! That is definitely a benefit missed when returning to the office.

I appreciate what my company did in the early days of the pandemic as well. We had many company-wide updates to what the company was doing and thinking in terms of responding to the pandemic. There were many local meetings to check in with people too; I don’t think we do this kind of thing nearly as often although we are encouraged to check in with each other more often.

Overall, I think the pandemic lockdowns taught us a lot about how to work and think differently. There are certain things we chucked out the window (using paper!) and introduced new ways of doing things.

While the rest of my story might seem like there are a lot of negatives, I think there were far more positives that came out of this — at least for working — although I can confidently say I would rather not do it all over again. That said, it’s hard to make progress and shake things up without a pressing need to go with it.

We’re not out of the COVID woods yet of course; I sincerely hope that everyone can stay safe and take care of yourselves.

I have epilepsy; I was diagnosed late in life, almost 4 years ago at the age of 35. I’ve told the story many times but suffice it to say this came as a complete surprise and there was no discernible cause nor any signs leading up to my first seizure. Before this, I only knew of my uncle — not related by blood — who has epilepsy.

My neurologist gave me a hand-wave answer of “genetics”, which is apparently a common source (although nobody really knows how it ties together). Since my diagnosis, I have learned there are many people around my life who have it and many famous people across the world. I may be 1 in 100, but it’s a lot more common than you’d guess.

My Struggles

The obvious struggle I can point to is seizures. In the last 1200+ days, I have had 7 tonic-clonic seizures. I almost wrote that I experienced 7 seizures, but that’s not true at all.

Every time I had a seizure, I woke up not knowing what happened, feeling fuzzy and in the most recent seizures, nauseous, sore all over, and generally drained. The truth is that my wife experienced the seizures, and the entire prospect of watching me go through a tonic-clonic seizure is terrifying for her.

But a lot of struggles aren’t always visible or don’t occur to people. Mental health has been a huge change for me, in large part due to the medication I was started on. Both Levetiracetam (known commonly as Keppra) and Lamotrigine (known commonly as Lamictal) can be occasionally prescribed to bipolar patients, so beyond blocking my seizures, they affect my brain in other ways.

“Keppra Rage” is well-known in epilepsy circles; one of the highly publicized side effects of the drug includes mood changes, and “rage” is one of them. For most people, it takes about 2–3 weeks to adjust to the side effects, and that has mostly been the case for me.

When I first started the drug, I knew for sure there were a few times I lashed out uncharacteristically. I feel that I’m lucky that I now only occasionally feel that kind of mood swing; but beyond that, these drugs made me feel very tired in the immediate weeks and months, and would often be ready for bed before 9 pm.

Mental health is something I’ve been more aware of in the last 4 years though, and not just the “Keppra Rage” aspect. I have seen far more “down” days than ever, and I even had the worst-ever breakdown of my life in January this year, set off by the littlest thing that went wrong (I forgot my work pass at home and had to drive back).

I deal with this by journaling every day, something I only started this past June. I haven’t missed a day yet, even though I might be “cheating” by writing an entry for the previous day as well as the current day, but it’s my journal — I make my own rules.

There are many other struggles and I recently found out that despite not having constant seizures, we all deal with similar issues. Epilepsy is not one-size-fits-all but there are common struggles and I recommend talking to other people with epilepsy — you’re not alone.

What am I doing now?

I try to talk about epilepsy all the time. Well, that’s not exactly true. I don’t bring it up every chance I get, but I try my best to bring awareness to the disease when I can and take part in awareness months — such as November, and March; this article itself is intended to be part of a campaign by Epilepsy Ottawa called “#Iam1in100”.

I’m supposed to take a picture of myself holding a poster, but I feel that’s not my lane. Instead, I write about my experiences and share the various images and graphics on social media posted by various epilepsy groups (including Epilepsy Ottawa).

One thing I wish I could be better at is stopping people when they make jokes about seizures. People often make side comments about flashing lights or burnt toast (although I think that one is for strokes, isn’t it?). On a recent trip to the dentist, the hygienist made a comment about smells and seizures, and I let it pass.

Should I have said something like “please don’t make jokes about that”? It doesn’t bother me personally, but I know it bothers other people. I would be making the world better for someone else. I’m not that type of person to be confrontational, which is the same reason why I tend not to speak up about other controversial topics.

In general, I’m taking care of myself. Beyond epilepsy, I’m actively trying to lose weight, and I think that this has side benefits that can only help me prevent seizures. We figure that lack of sleep is one of my triggers for a seizure, and I believe that weight loss helps with better sleep.

I also feel that if my body is in better shape, that can only help my brain function better. I haven’t had alcohol since 2019, and despite thinking about taking up the occasional drink now that I’m almost 2 years seizure-free, I think I’m going to keep the sober streak going (it helps that good non-alcoholic beers are coming out left right and centre). As I write this, I feel great and in the best shape I’ve been since — ever.

I am 1 in 100, but I don’t let my diagnosis define me.