How Having a Seizure Changed My Life

Suddenly, Last Summer: The Story of My Seizure

A campfire on a comfortable summer night, followed by a late-night shower to wash off the many smells of the day—bug spray, smoke, sunscreen, wine. A smile as I climb into bed clean, pleasantly drunk, and ready to sleep. 

And then: A glass of orange juice pressed to my lips. Hands holding up my head and neck. Panic-stricken eyes staring at me. A woman in blue polyester asking questions in a calm, confident voice.

Hours later, I hear about how my body convulsed and writhed. I find electrode stickers on my ankles and chest, but I will never recall the paramedic putting them there. I ask questions as though this thing happened to someone else, because for all I can remember, it might as well have.

Eventually, I reflect on the night before the seizure and realize my series of small, cumulative errors. I remember how earlier in the evening, I had overeaten to treat an intense low blood sugar, and how I then took too much insulin to treat the resulting high blood sugar, and all of this while continuing to drink alcohol. I’d made countless other good choices that day, and these three small mistakes were innocuous enough—until, for whatever reason, they weren’t. 

In the days and weeks after that fateful morning, I receive many tight, concerned hugs. There are words of comfort, concern, and support. An almost overwhelming amount of love is poured on me from all sides. 

I feel grateful and humbled, but also defeated. The countless knitted brows I encounter tell me that I must make a change. I must do everything I can to restore the sense of security that we’ve all lost. 

And so, my shoulders sag as I open my laptop. My head hangs as I type my address, punch in my credit card information, and click “Order.” A few days later, the continuous glucose monitor (CGM) package arrives in the mail. I barely resist the urge to stomp my feet as I set the box on the kitchen table. I stare at this unwanted device for a good while before opening the packaging. I don’t want you, I think. I never wanted you. 

Reflecting on One Year of CGM Use

It has been one year since my seizure, which I first wrote about in this post. Prior to this incident, I had always resisted the idea of using a CGM. In hindsight, this was mostly a way of exercising some bodily autonomy. I couldn’t choose not to take insulin or test my blood sugar, but I could choose not to wear a CGM, damn it. 

I told myself that I was opposed to wearing a conspicuous medical device on my arm, but what I was really fighting, in my own illogical way, was diabetes itself. After one year of CGM use, I can no longer imagine living without the now-familiar device attached to the back of my arm. 

My CGM is not a perfect piece of technology, and it is not a cure for type 1 diabetes. But it does give me access to so much more information than I ever had before. This information helps me make many of the countless decisions involved in managing my type 1 diabetes on a daily basis. I can not only make better choices, but I can also make sure that multiple small errors do not snowball into one big consequence like they did when I had my seizure. 

Wearing a CGM has also helped me rediscover my confidence. Each night, I go to sleep knowing that my CGM alarm will wake me if my blood sugar dips too low. I always know what my blood sugar level is and whether it’s rising or falling, which makes everyday life much easier to manage. Simple tasks that used to be frequently affected by bad blood sugars—like grocery shopping, driving, and exercising, to name just a few—are far less stressful than they used to be. And for the first time since I was 15 years old, I can leave the house without carrying a glucometer. 

Why We Need CGM Access for All

Wearing a CGM has been liberating in ways I truly hadn’t expected. One thing that has been less than freeing, though, is the cost of the device. At $299 a month, my CGM is a hefty expense. Even though the Assistive Devices Program (ADP) in Ontario provides funding for insulin pumps and supplies, this program does not currently include funding for CGMs.

For many people with type 1 diabetes, as well as for parents of children living with the condition, the cost of a CGM simply can’t be accommodated—even if that means a greater risk of poor glycemic control, related complications like seizures, and even sudden death.

The benefits of CGM use for type 1 diabetes are clearly supported by research. These devices help users reduce A1C levels, which is a measure of average blood sugar levels over 2–3 months. They also increase time in range, which is the amount of time users spend with their glucose levels in target range. They reduce the frequency of severe low blood sugar, which provides peace of mind to patients and parents of children with type 1 diabetes alike. 

Taken together, these benefits represent a huge improvement to quality of life. They also have the potential to prevent complications associated with diabetes, which currently represent a significant burden for our healthcare system. It’s no wonder then that Diabetes Canada and JDRF Canada are both advocating for CGM coverage across Canada. 

It’s true that healthcare is a complex, multi-faceted issue. But to me, the basic safety of people with type 1 diabetes isn’t political: it’s personal. I want everyone with this condition to have the option of using a CGM, no matter their means, so that they can feel the same sense of security I have gained. I also believe widespread CGM usage has massive potential for preventative care, which—to get political for just a moment—benefits all taxpayers equally.

Of course, this type of change doesn’t happen all on its own. Provincial funding for CGMs will only come about through clear scientific research demonstrating the benefits of this technology combined with advocacy by active citizens. With that in mind, I decided to take action by sending a letter to the Premier of Ontario, the Ontario Minister of Health, and my MPP via this form provided by Diabetes Canada. I hope that by sharing my perspective publicly (through this post) and directly (through my letter), I can contribute to this necessary policy change.

If you feel the way I do, I encourage you to do the same. The website linked above provides a pre-written letter that you can customize or leave as-is, and it also auto-populates the recipients based on your postal code. If you’d like to share this post with your friends or family to raise awareness on this topic, that would be incredible, too.

As cliché as it is, the truth is that together, we truly can make a difference.