"What-If" Moments When Living With Epilepsy
Last updated: December 2022
A common thing ill and disabled people experience – like those of us with epilepsy – is grief and grieving the person they could've been or the things they used to be able to enjoy.
For example, someone with an intense IBD might mourn the days they could enjoy food in peace. Someone with epilepsy might yearn for the days when they could go for their daily bike ride alone, but they can't anymore in case they were to fall, hit their head, and trigger a seizure on the side of the road all alone. I know I certainly hated when I had to stop riding my bike after my initial diagnosis.
Today I'm not going to talk about grief and the grief process (although 1 day I might). I'm just going to talk about a similar element that some might put under the grief and mourning category, but I just refer to them as "what-if moments." Usually, depending on the topic, the "what-if moment" is brought up by someone else asking if you feel like you missed out on something in particular – an experience, an event, or something you couldn't be part of because of your illness.
Epilepsy's impact on life
Lately, I've been thinking about my own what-ifs. I've been pointlessly wondering, "What if I actually graduated high school? How would that moment have felt?" I say it's pointless for many reasons:
- It doesn't change the present.
- It can't be changed even if I want it to be changed in the future.
- It doesn't play a role in my future.
Also, I still would've gone on to university far too early for my personal needs and abilities, becoming burnt out and leaving early. If anything, if I didn't take a break for a few years by leaving high school early, I probably would've either hit burnout quicker or not known that I can say "no." I could have destroyed myself like I know so many people have done in the name of higher education that can no longer be used in their future because they can't handle working in their studied field. And I would've ended up doing the work that found me this job that I love so much anyway.
My seizures' impact on school
And yet, with knowing all of this, I still wonder. Would I have felt a moment of pride? Would I have made my mum or family proud? Eventually, I would go on to distance education and then go on to leave high school early (polite speak for "dropping out") due to a mixture of not wanting people at school to see my seizures and bully me for them, falling behind in school due to being in the hospital so much for my seizures, my school not accommodating me for my illness, and the intense daily anxiety caused by both of these things at the same time.
However, the mainstream high school I went to before had a graduation tradition where they would read the graduating students' names out in order from who was the last to enroll at the school to who was the first to enroll. Where would I have landed in that list? Would I get much of a cheer from anyone in my cohort? Especially when they didn’t know how ill or disabled I was because, at that time in my life, I was hiding it all as much as possible due to fear of judgment. So, it's not like they would've been proud of the student that had to try harder to keep up. They had no idea what I was battling alone.
Why do I dwell on the "what-ifs"?
But even if I felt a moment of pride as my family and the whole school cheered in pride as I was called out in the middle of the list, would I even care about it today?
Graduation is so important to people who get to do it. But by the time they finish university or have kids they never think of it, or they may hardly remember the details of the event. It's not that important to them anymore as life goes on. So why am I so stuck on wondering what graduating feels like?
Because I didn't get to experience it.
I had to focus on my health and taking care of my body
I was constantly in and out of the hospital, too fatigued (or experiencing other postictal side effects) to go to school, or too anxious to attend school. So, I missed out. Even when trying my hardest I was falling behind in school, which just stressed me out further on top of the medical stresses. In the end, leaving high school early and not graduating was what was best for me, especially as I got worse as the years went on before I started to get better.
Taking a few years to relax, rest, and focus on my health and getting better without distractions was more beneficial than any high school diploma could ever be. Those few years also helped me find my community online, and discover that I have a passion for being a voice for my community everywhere I can be.
I got to hone in on that passion and advance my skills on it and I now work for a healthcare company advancing clinical studies and aiding clients through such studies, and for Health Union as you see me writing here on EpilepsyDisease.com. I also help Epilepsy Queensland Inc. and in turn Epilepsy Australia advance their programs, particularly the Ambassador and Peer Mentor programs.
Accomplishing so much with epilepsy
I'm doing all of this while being a disabled athlete training for abled-bodied competition for Taekwon-Do in the Olympics. And I now live in my dream city after fighting off homelessness for over a year. I have plans for my career – both with the aforementioned roles as well as being an athlete and the opportunities that brings – and I have plans to start studying with adequate aid in place at my dream university after 2024, which will only expand my dream job opportunities.
I'm so happy with where I'm finally at and where I'm on track towards! So why do the "what-ifs" matter? Well for the most part, they truly don't. As I said at the start, this particular "what-if" is pointless, as are most what-if thoughts. Yet here we are discussing it in 1,000+ words.
I don't know when they'll stop plaguing my mind, but I find peace in knowing I love where I'm at now. I try to squash the thoughts reminding myself how they're pointless and how I'm where I'm meant to be and, better yet, where I want to be.
What about you? Do you have these "what-if moments" too? What do you do about them?
Is increased screen time a seizure trigger for you?