The Moment That Changed How I Felt About Epilepsy Support Groups
I keep trying to convince my roommate that we should get a cat, that I need a cat. I’ve already reconciled myself with the reality that I can’t have a dog– something to do with my tiny apartment, lack of funds, a full-time job on top of being a full-time student, and not being able to take care of one properly. Still, I haven’t given up on getting something small and fuzzy and loving that will cuddle with me when I’m wandering through my darkness.
I use all the tools available: I tell her that I’ll take care of our new buddy; I promise that I’ll pay for everything; I implore her to rescue a street kitty with a missing ear who will fit in with our makeshift family, that he’ll fit in on the Island of Lost Toys with us; I play on her guilt, I tell her that I need something uncomplicated and loving in my life right now. I manipulate her love for me so that I can have something I believe I need. I am confident that her promises to take back the stray if I impulsively get one without her are bluffs, that she just hasn’t had a pet and doesn’t understand that kind of love.
I make jokes about how it will be my “epilepsy service kitty” and will help me. She tries to hide her cringe. I try to ignore the fact that she’s started checking in on me when she comes home late, making sure I’m in my bed and not off somewhere having a seizure or wandering around in a postictal state. I know that my ability to toe the line and play on her sympathy is temporary, but I know it’s there. She is concerned for me and knows I am fragile right now: she knows that I need something to take the edge off my loneliness.
She also knows that a cat won’t solve any of my problems, but I generally refuse any constructive coping mechanisms. My standard approach is to compartmentalize and go from there. She has learned over the years that she shouldn’t push me.
But every once in a while, when I’m particularly lost or just had another episode or the weight of it all gets to be too much, I do consider the idea of group therapy, again. Maybe it’s because that’s what was drilled into my head throughout my teenage years or just my attempt to deal with this thing “head-on” and not let myself spiral as I have so many times before.
I can hear my mother asking me if I thought the group could help me. “Maybe the people there could help you figure out your meds or with ways to remember to take them.”
She attempts not to seem overbearing, quickly followed by my attempt to perform a casual brushoff. “Those people just wallow, Ma. They live their lives surrounded by this thing. I don’t want to be like that.”
In reality, I was 16 when I started having seizures and didn’t want to talk about my issues or acknowledge that I was different from anyone. As a kid who never fit in all that well to begin with, the last thing I wanted was to seize and make a scene on the school field trip. Nothing screams “defective” or “freak” like someone calling the paramedics because your meds haven’t been straightened out yet. Nothing makes you want to be more invisible than someone knowing who you are because they heard about your seizure.
But I’m not 16 anymore, and I’m not supposed to be ashamed of being different from everyone else. I’m 23, damn it. I’m a twitch and proud of it. Or at least I try to be.
The first time I was talked into group therapy, I was 20 and so depressed that my mother eventually wore me down. Nothing else was working, so I said I would go.
My mom drove me since I wasn’t allowed to operate a vehicle. She waited in the parking lot while I was there. She knew I didn’t want her in there with me, but she also knew that I could be a flight risk, so she offered invisible support from afar. As I walked into the building, feeling my mother’s concerned eyes on me, I wanted to make a break for it or hide in the bathroom for the hour and a half. But I have a lot of pride, and I said I would do this.
Sitting in that room, I willed the clocks to move faster; I kept my arms crossed and uncharacteristically slumped in my chair, trying to make myself invisible while simultaneously hoping that they would see my discomfort and skip me. They did not excuse me from share time; they probably would have if I had asked, but my pride was still with me in Rock Bottom again. So I told them my history, trying my best to keep my voice steady and avoid the tremulous emotions I kept buried.
Group therapy is an odd thing: there’s a particular structure to the process of sharing. You introduce yourself: Michela. You explain what kind of epilepsy you have: generalized grand mal seizures (tonic-clonic for the new age epileptics, but it always sounded like a drink to me, so I keep with the classic). Length of time affected: since I was 16, about three years. Medication(s): Trileptal, in the process of switching to Keppra, side-serving of folic acid to balance things out.
They don’t ask how often you have seizures, but you can tell which ones have more: who can blend in more than others. My first time in group, and the few times I went after that, I always left furious and manic. All I saw were broken people, so absorbed by their disease that they ceased to be anything other than that disease. I saw people struggling as I was to be normal and was infuriated by anyone who could even entertain the idea that they were grateful for epilepsy because it made them who they were. Consumed by my grief and pain as I was, I believed those people were full of shit and just saying what they thought they should be saying.
Support groups are designed to help specific groups of people deal with a shared issue, whether that be a disease, loss, or something else, but the people who gather are meant to help each other cope. They are resources who understand what everyone there is going through. I should have felt comfortable with these people, but I just felt like I was drowning. These casual settings that were supposed to help only made me worse. I blamed these people; I blamed the very idea of support groups and swore that only people who liked to wallow belonged to them.
But then I went for two years and five months without a seizure. To the day. After going two years without incident, I could have started to be weaned off my meds; they could have seen if I had been cured. I chose not to because I was so stable that I didn’t want to risk it. But then that stability ended, and it was like I was new, again.
I came out of my postictal phase — the altered state of consciousness after an epileptic seizure — wandering down Comm Ave at midnight on a Sunday night and had no idea what was going on. I had walked a mile in this state, a state that typically lasts from five to 30 minutes. I had changed clothes, put on shoes, and grabbed my purse. I had left my keys and phone in my apartment. I have no idea where I thought I was going, but I was trying to get somewhere. When I came out of it, it took me a little while to figure out what had happened to me; at first, I was convinced that I had dropped my phone while walking and more concerned with finding it than why I was out at midnight.
And then the pieces started to fit together. I did the body check I always do after a seizure. I checked my limbs for pains and sore spots; I checked my head for bumps and blood; I checked my tongue for bite marks. I realized what had happened after I felt the cuts on the side of my tongue. When someone has a grand mal seizure, it’s typical that their jaw locks, and in that process, they bite down on their tongue. It’s where the myth that you have to jam a belt or stick in their mouth comes from. Disclaimer: never do that if you want to help a person seizing, it will just break their teeth. And I always have plenty of fresh bites to add to my collection after a seizure; my tongue has serrated edges of scar tissue.
Luckily, my apartment door doesn’t lock, and I didn’t feel any shame buzzing everyone in my building until someone let me in. My phone was sitting on my kitchen table next to the hummus and carrots I was eating before. No chair or cup was knocked over. I had closed the door behind me. It was almost like it hadn’t happened. But then I called my mom, and I could hear the panic in her voice as she heard me break down before I even got the words out. I could feel through the static on the line as she guessed. She was always scared of what happened when I didn’t answer my phone or whenever she felt a “disturbance in the force,” as she puts it.
I might as well have been 16 again. I depression slept for a week; I kept bursting into tears in the worst places: trains, works, school — silent tears streaming my face, unable to stop them. As with most life-long diseases, epilepsy comes hand in hand with depression. About one in every three people struggling with epilepsy are also treated for some form of depression. Between the trauma of the seizures and the copious side effects of the medications, it’s not surprising. Most people get recommended group therapy to help them cope, but I had already tried that.
It was during my week of sleeping and wallowing that I realized I needed help all over again. And then I decided to give the support group another shot. There is only one epilepsy support group in Boston that meets face to face, and they were meeting only two weeks after my episode. I decided to at least give it a try.
Upon going in, I felt the same way I did years ago. I didn’t want to be there. I didn’t want to be reminded by these people how broken I was and am. I again debated running, my mother wasn’t there and would never know, but again I had too much pride. But then Susan, the woman who runs the group, asked us to go in a circle and introduce ourselves (most were regulars, but there were a few new people like me) and tell the group about a problem they were having that could help them.
The first guy to speak was somewhere in his 50s. He told us about his seizures and meds, and then he said that he was having trouble finding a cable package that would give him free HBO. That was his issue. That was it. The next woman wanted our opinion on the dress she had gotten for her niece’s wedding. It was a lovely dress. Another woman told us about her kids and how hard it was to deal with them while finishing her residency. People joked about calling her “Doctor” the next time they saw her.
And that is when I saw them. I saw these people were like me. Some worse off, some about the same, struggling to go beyond their sickness and be more than that. They wanted to watch TV like their friends and neighbors, but at a reasonable price. They wanted to look their best. They wanted to be good parents to rambunctious kids. And they were doing their best to be what they wanted to be. They were encouraging each other and joking around. They were at ease with each other and themselves — something I am still struggling with, seven years in.
I listened to these people, and then all of a sudden, it was my turn. I was ready with my name, type of seizures, medication and years as a member. But that’s not what I ended up telling them. I told them that I had gone almost two-and-a-half years without a seizure. I told them what had happened and how I was scared to be alone now. I told them I was struggling with it. I told them that I was angry and sad. I admitted that I wasn’t doing well. That it was hard. I cried; the man sitting next to me put his hand on my shoulder. When I was done, they told me similar stories. They gave me advice on medications. And then they asked me what else I did. They asked me about school and what I wanted to do with my life.
And for the first time in my life, I understood why these people met every month. I understood why they were involved and why they needed each other. I finally understood that they were meeting because they saw each other without illness. That it was something that united them, but not how they saw each other.
I am still a long way from not being affected by the seizures in my life. I may never be OK with them, not truly. I would not wish seizures on anyone. I have a medicine cabinet filled with medication and vitamins that are supposed to help me with the side effects. I have not driven in years; I do not like to drive. I avoid clubs because of strobe lights. But I now have a group of people who I know will be there for me. I have people who understand what it’s like to be “defective.” And I no longer judge them for needing support. I do not judge them for wanting to be with people who get it. I don’t judge them for their illness. And I think that’s a step toward accepting my own condition.
Getty image by SeventyFour.