“In the event of a sudden loss of cabin pressure, oxygen masks will automatically descend from the ceiling. Grab the mask, and pull it over your face. Fasten your own mask before assisting others.”
I want to write about what the caretakers, the parents, the loved ones, feel when our children are affected by epilepsy. My goal here only to relay what it has been like for me, in the hopes it is helpful for someone. It seems each caretaker responds a bit differently to this situation. For me the experience has been, at its worst, highly emotional and exceptionally difficult. In the most difficult times, I greatly depended on hearing the perspective of others who struggled too.
Epilepsy is terrible. Seizures are terrible. They are frightening, disruptive, and can be dangerous. They are a demonstrative indication that something is wrong. Part of me hates them. I hate the way they look and sound. It connects to some very primitive part of my brain — probably the same part that recoils at the sight of blood, or a grotesque injury, or the macabre — that says “something is very wrong.”
Nora’s seizures were the most difficult thing I’ve ever dealt with. They triggered a primal response within me to defend her. I felt as though she was under attack, that there was a monster with her or within her. I would daydream that I could make the monster real, something I could see or touch, something I could pitch all of my fear, anger, and frustration against. But I couldn’t do anything for the seizures but wait and watch. So I took data; lots of it. I recorded the number of seizures she had in the morning, afternoon, and evening, as well as the medication dosages, how she slept the night before, whether or not she had a nap, what foods and supplements she had. I made models of pharmacokinetics to estimate how much medication she had in her blood at any hour of the day. I ran regression analyses to try to determine correlations to seizures with any of those factors, even including some time lag factors. At the end of each day I updated my plot of the number of seizures per day. Data keeping was a way for me to feel like I could do something.
One of the most challenging aspects of adapting to the new reality was that it was always changing. It was a roller coaster. First there was the shock of the initial tonic-clonics, then a period of hoping it was an isolated incident, then the disappointment of their recurrence, then the appearance of the myoclonics, again the hoping it was isolated, then learning about the terrible prognoses that myoclonics can signify, then an improvement in seizures as we changed medications, then a steady march of the myoclonics’ reappearance and worsening. Each brief period of relief and hope dashed with growing evidence that this was not going to be easy, that Nora may be impaired, that we will have to adapt to life as parents of a special needs child. I’m not a superstitious person, but I began to feel that to dare to hope or smile was just to invite the pain of falling when those hopes were dashed.
Mornings were the hardest. I woke up each day on the edge of tears. I would lay there in bed, waiting to hear Nora’s feet on the floor as she walked to our room to cuddle with us for the 15-30 minutes or so before we got up. The daily seizure count started almost immediately. As Nora laid with us, she would typically have 1 to 3 myoclonics. Time to get up. My feet felt leaden. “One foot in the front of the other” I told myself so many mornings. I trudged to the kitchen to put the tick marks on the refrigerator whiteboard, already anticipating if the daily seizure count would be above or below normal. If the trend was down, or up.
I was teaching a course that term — power electronics. I remember many mornings standing before my students as they chatted with each other in the minutes before the start of lecture. I would have my face down, pretending to read my course notes as I fought back tears. Take a deep breath. “OK class, let’s get started…”
I started to break under the constant pressure and stress. The first and only genuine panic attacks I’ve had in my life started coming. I remember one morning when she was a few weeks in on the switch from Keppra to Depakote. As we made the switch, her seizures dropped dramatically. She even had a few seizure free days. But then they started back. A little bit more each day. This was the most devastating time for me. There was no sugar-coating it: it was very bad news to have the myoclonics marching back through the new drug. This particular morning I was getting ready to leave and happened to glance over at her as she played near the couch, just in time to see a myoclonic. I felt the rush of hormones; the involuntary chemical cascade that tightened my chest and made me feel nauseous. I remember pacing back in forth in one spot and clenching and unclenching my hand. I felt like I was going to pass out. I felt uncomfortable in my skin.
I started to find it hard to be around Nora. Of course I loved her as much as always, but I just couldn’t handle the seizures. I would eat dinner standing in the kitchen instead of sitting with Christy, Anders, and Nora at the dinner table, as the dinner table seemed to be a prime time for seizures. Christy started to feel the stress of my stress too. So I started to branch out. I got much help from my other family friends, and I also started going to see a professional counselor to help me with anxiety management. Another excellent resource that really helped me was Michael Koskie’s book “Diet for Seizures,” which discusses his family’s use of the Modified Atkins Diet for their daughter. He has a section in the book on the emotional impacts to the parents that was very helpful.
When we switched to the diet and Nora improved, it brought me the much needed time and space to heal. There are still times when I feel the anxiety and fear come back, particularly if Nora is twitchy in her sleep, or if she is sick. But on the whole I’ve gotten much better, although it has taken a lot of time and persistence.
So we want to say to those whose hearts ache for their children and the uncertainty of their well-being: it’s going to be OK. Even if you don’t see how right now. Trust me. You are going to be OK. Your little girl or boy is going to be OK. It might seem so hard and scary right now, but it is going to get better. That doesn’t mean there won’t be more challenges or more seizures, or that it won’t take a while more. But it will get better. Keep going. Breathe deeply and keep going.
Misc words of wisdom:
- Kids are really, really tough. They don’t feel sorry for themselves. They just keep going. Take inspiration from their energy and happiness even in the presence of seizures. I remember being with Nora in the emergency room between tonic-clonic seizures (she had one about an hour prior, and there was one coming in just a few minutes, although of course I didn’t know it) and she was examining my cell phone with such interest. I felt sad and scared, but she didn’t care that she had just had a seizure. She wasn’t sad or scared. She was being an inquisitive child, as always.
- Each hard moment you make it through is one less on your path. Your child is going to have X number of seizures between now and seizure freedom. Each seizure means there is X-1 left. Each day you make it through brings you and your child closer to better medical knowledge of epilepsy diagnoses, causes, and treatments.
- It’s OK to be angry, sad, and scared. Stop and cry and when you need to. When it is time to get going again, put one foot in front of the other. One day at a time, one hour at a time, one step at a time.
- Use your friends and family to give yourself breaks from epilepsy care. It doesn’t mean you won’t stop worrying or constantly checking your phone, but it will do you good to get out of the house and in the company of others (e.g., your work, your friends, your hobbies) for a while.
- Though it can be hard, be grateful for what you can. It can always be worse.
- If you have a partner or spouse, recognize that sometimes the stresses of epilepsy will stress your relationship too. Take care of each other.
- Go see a professional counselor. Your medical plan may cover it. A counselor will be able to hear you out and share specific stress management techniques that your partner may not. Counselors helped me with anxiety management.
- Your child’s condition is not your fault, nor anyone’s doing. Human physiology is complicated and messy and sometimes things go haywire. What’s happened has happened and that’s that. There is no meaning to it. Having kids is tough business. We have no guarantees on their safety and well-being. When we have kids we take our hearts and put them outside of our bodies, at the mercy of entropy and the unknown. All you can do is the best you can do to care for them and love them.
Keep going. Breathe and keep going.
Any words of wisdom from other parents and those affected by epilepsy are most welcome in the comments.
We made it a Japanese themed day (on St. Patrick’s Day, no less, but at least we beat the crowds!). We had sushi at Masu Sushi, which felt like a fancy place but was low-key for lunch. Nora can eat edamame and sashimi until her belly is content, and here we found some dungeons crab rolls that both kids adored (Anders got the rice from Nora’s, a win-win).