Why I Don't Believe My Epilepsy Is Here to Teach Me a 'Life Lesson'

I was diagnosed with epilepsy when I was 24. I had a job I loved as a community organizer with faith congregations, but as my hours got longer, I started having panic attacks: an instantaneous feeling of overwhelming déjà vu and terror. Sometimes I would lose the strength to stand, dry-heave or struggle to think between dizziness and splitting headaches. Eventually, I had so many that the time between attacks began to blur, making me feel like I was floating.

This went on until the morning I woke up on the floor with paramedics standing over me, barely understanding when my partner explained I’d had a seizure. I learned that what I thought were panic attacks were actually textbook partial complex seizures, and that I was lucky not to have had a grand mal earlier. Before too long, I knew I had epilepsy. I knew it was serious. I knew it wasn’t going to go away. But I had to believe that everything would be OK, that epilepsy would not change the plan I had for my work and for my life.

That was the first lie, and I needed it.

 

Looking back, it’s amazing I kept believing it would all be fine – as my medication made me unable to stay awake or remember what I’d done the day before, as I screamed and broke dishes over disagreements about who would cook dinner, as small mistakes like giving my partner the wrong directions to the pharmacy made me cry. I kept it up as I worked 70-hour weeks riding the bus across the county, no longer able to drive. I kept it up as I filled out the psychological health forms, explaining that yes, I had felt overwhelmed. Was it the seizures? The medication? The work stress and the public transit hassle? Coping with a chronic illness? All of the above? Hard to say.

The lie didn’t wear thin until six months later, when I found myself in a deeper depression than I’d felt before – unable to get out of bed or look forward to anything. I started taking comfort in what I called the “bad thoughts,” thoughts about not having to be sick anymore – or do anything anymore.

I started one antidepressant, then another, upped my anticonvulsants and spent two terrible weeks on hormonal birth control, falling asleep in the middle of dinner or at my desk. I started having seizures again, first scattered ones I could explain, then a more regular pattern. Sometimes I told my doctor, sometimes I didn’t.

I needed a new lie. I started to believe that what was happening to me – the pills and the doctor visits, the long bus rides and the depression days, the way I felt when I saw mothers and their children and the fear I had about never having my own – was a life lesson. I believed that epilepsy was teaching me something: how to take a break, how to be vulnerable, how to stop being a perfectionist, how to show compassion to others, how to feel hope in hard times, how to celebrate my own strength. I wanted so badly to believe it all had a point.

Last month, the day after my 26th birthday, I had another seizure. I was starting my third week at a new job, an important job, one I had worked hard to get. I was gearing up for more long weeks, more hard work. And then, sitting in the morning staff meeting, I felt the familiar sense of dread and déjà vu, the numbness in my right arm, nausea rising in my throat. I knew it was over: I called my doctor, lost my driver’s license, lost the job.

I struggled to understand what lesson this was teaching me. Coping with failure and adversity? Learning to value myself beyond my working life? None of it fit.

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As an organizer, I teach people that the only way to fight injustice is to know who you’re fighting against. It’s the hardest thing to do, because it means losing faith in the things that are supposed to protect you: your government, your boss, the police. It is only in losing that faith, in understanding how vulnerable we are, that we can fight the injustice in those institutions and stand up for ourselves. You can’t enter a boxing ring believing every move your opponent makes is in your benefit, even when they haul off and hit you in the stomach. You can’t fight for your health care when you believe that somewhere, behind the scenes, the people proposing taking health care away from millions of people are somehow going to make it turn out alright.

As I learned this year, my representatives are not friends of mine – they will bargain with my life on the Senate floor. I wasn’t surprised by this, though I can’t pretend it didn’t hurt. I’ve fought too many public officials to have had much faith.

Here is the harder truth: my epilepsy isn’t a friend of mine, either. It’s not there to teach me life lessons or to make me strong. It’s there to run electric shocks through my brain. It feels so intimately a part of me, something I carry not just in my very skin but in my mind, that it is hard to believe it actively works to hurt me.

Epilepsy took a lot from me before I realized it. It took my memory, my sleep and my mental health. It took my driver’s license and my pride, my ability to go to the grocery store by myself just because I want to or because I need some milk. It took my job and the health insurance that came with it. One day, it may take more: I stay up at night wondering if it will take my chance to have children. There is no way to know.

It’s hard to be sick. It’s harder, in a way, to be sick when you acknowledge there’s no point to it. And there isn’t – epilepsy did not make me strong. I was strong already. Epilepsy did not teach me how to be compassionate. I was compassionate already. Epilepsy did not teach me about the important things in life: I knew them already. I’m still working on those things, like everyone is. I’m just don’t believe anymore that the zombie feeling of anticonvulsants, the time and money I spend at the doctor and the depression that still creeps up on me sometimes are some kind of asset in that work. They’re not.

Maybe one day this will feel like a kind of freedom. I’m not begging epilepsy to teach me any more lessons. I’m not trying to be inspirational in my sickness – because if epilepsy isn’t here to teach me lessons, it’s sure as hell not here to teach you any. I’m not operating under the belief that if I ignore it, like you would a classroom bully, it will go away. I’m angry with it. I will be angry for the rest of my life. I will never see the point. But at least I know who I’m fighting against.

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Thinkstock photo via MarinaMays.