I Wonder Who I'll Be Without My Seizures

I had my first seizure 10 years ago.

It was terrifying. I don’t remember it, and that’s part of what makes it so terrifying. I know I was confused and didn’t feel in control of my body at all. What followed was a long and harrowing journey towards a diagnosis.

After my fourth or fifth seizure, the doctors determined my seizures were non-epileptic — a stroke of luck that I happened to have a seizure while undergoing an EEG. At the time, seizures were the most prevalent part of my life — I’d have them daily, sometimes multiple times a day, and would lose control of my body. They hurt, they made me physically sick and weak, and I am filled with dread every time I feel one coming on. Ten years, hundreds of seizures, and six concussions (that I remember) later, I’m at a new point in my life.

It’s been months since my last seizure, and it’s no longer a constant risk at the back of my mind. Sure, I know the possibility is still there — it will always be there, but it isn’t a part of my daily existence. I’ve waited 10 years for this moment, and now that it’s here, I’m surprised that I don’t feel more… recovered? Healed? I don’t know how I thought I would feel, but I thought I would feel better somehow.

Some medical conditions have cut and dry timelines; many types of cancer consider five years cancer-free to be “cured,” while some medical conditions require only a few months of being symptom-free. It can vary for seizures — some say two years, some say five years, and some say you can drive after just one year. I’m not sure what my timeline is, but I do know this is the closest I’ve ever been to “seizure-free.”

Getting here hasn’t been easy — the past year has been exceptionally difficult because as much as I hated having seizures, they provided a reset of sorts. It was intense, extreme discomfort and pain for a relatively short period of time, followed by some fog and disorientation, but ultimately felt like a cathartic release. It was the only way for my body to release pent-up stress and trauma when I had no other tools. Not having seizures means I feel things that much more intensely, and the pain and trauma stay in my body until I work through them.

I want to be clear on something: I am immensely grateful to have gone this long without a seizure. I never thought this would be possible, and even if it doesn’t last forever, I’m glad to have made it this far. I’m proud of myself for setting a new record every day. But for better or for worse, my seizures are (were?) a part of me. Without them, I feel incomplete in a way. A part of me misses them. Having seizures became weaved into my identity, a “Fun Fact” about me, and a defining characteristic that led to my strength and determination.

I’m beginning to wonder how long it will be before I can no longer call myself someone with seizures. It took me a long time to not be ashamed of my seizures, and now that I’ve made it here, I haven’t had a seizure in months. When I think of not having seizures altogether anymore, I begin to wonder who I am or who I will be without them. It’s almost like I’m having a mini identity crisis. In accepting my seizures, I began to see them as any other characteristic — the same way I see my thick, dark hair, or my short stature. If I don’t have those defining characteristics, am I still me? Am I still strong if I don’t have to deal with seizures? Am I still inspiring if I don’t have that hurdle to overcome? Am I still worthy of love and care if I don’t struggle in the ways I used to?

I’m not asking to have seizures again, I’m happy to continue racking up seizure-free days until I can officially consider myself seizure-free, but I think it’s important to talk about this strange middle ground we go through when we heal from something that has been so central to our identity and being.

When I look back on the last 10 years of my life, I can’t look back without seeing my seizures as a central part of my experience. Now, when I look forward to the next 10 years of my life, I’m trying to imagine what it will look like without having to consider seizures. It feels a bit new, unknown, and scary. I never thought that I would be seizure-free, and I still don’t know that I will ever be. I could have one tomorrow, or next month, or next year. But this is the closest I’ve come to entertaining the possibility that perhaps there’s a future for me without seizures in it.

With that possibility comes a lot of questions. Who am I without seizures? What will my life look like if I don’t always have to plan for the possibility of a seizure? How will my body change now that I may no longer have seizures? How will my mind change? Will the muscle fatigue, chronic pain, and other physical challenges that came from seizures go away, or is that going to be a different battle to face? How will I move from seizures being my reality to being my past? Will people still love me and want to care for me or show up for me? Will I still be seen as strong and determined and a fighter? Will I become weaker, or be seen as weaker? Will I lose the right to talk about how hard it’s been because it’s in the past?

Part of me feels silly for asking these questions when I know I’m nowhere near being considered officially seizure-free, but these are new feelings and questions that have been coming up as I heal more and more every day. I wish there was more space to talk about the potential fears and losses that come with healing. We think of healing as this amazing thing (which it absolutely is), but we forget that there are two sides to the healing coin. And I wish I felt more support and space to talk about how scary and lonely it feels to be losing something that has felt so integral to my being, even if my goal all along has been to lose it. I hope that we can begin to see healing in a nuanced way as a complicated journey, versus an amazing endpoint that feels amazing all the time.