“Mom,” he warbled, “I’m having a hard time.”
I looked up at his face and watched his lower lip tremble as he fought to keep it from frowing. I nodded, and then I held my arms open to give him the choice to be embraced.
He stepped into me. In that moment I wished I could squeeze out every bit of frustration, isolation, and confusion he felt.
“My brain feels so fuzzy,” he sniffled. “Please be gentle with me today.”
This is epilepsy. Epilepsy isn’t about the seizures, at least not in our family.
It’s about his anxiety that comes with unpredictable lapses of consciousness. It’s about the general malaise. It’s about how much more complicated making a decision becomes for his brain that has been overworked. It’s about insecurity and uncertainty and inconvenience and frustration. It’s about how scary it is coming to in a place that is different from where he remembers being, even when I am right beside him.
It is being hyper-aware of temperature changes, because being too hot or too cold lowers his seizure threshold. It’s about the intense energy and the speedy Ferrari brain that is too fast for me to keep up with. It’s about recognizing that Ferrari brain often runs so fast that it needs to be reset, which is the service a seizure performs. It’s about the immense joy and crushing despair that happen within minutes. It’s about the craving for extraordinary stimulation except for the 2.4% of time that it’s too much. We never know when that 2.4% will show up.
It’s the backing out of plans because it’s a rough day. It’s backing out of plans because the seizures from two days ago continue to impact his little body with headaches, exhaustion, and anxiety. It’s the backing out of plans because he doesn’t feel quite right, which means the seizures will arrive in the next 24 hours or so and we’ll have a fresh opportunity to back out of something else, too.
It’s about feeling helpless and hopeless. It’s about rolling him on his side after a convulsive seizure and watching his lips turn blue while I monitor him to see if I need to start CPR. It’s about taking his rescue medication everywhere. It’s about finding the terrifying balance between giving him the space to live like a normal five-year-old and protecting him from harm.
It’s about keeping meticulous logs (there is an app for that) of everything from sleep to food to poop in addition to the frequency, length, and type of seizures. It’s about studying the brain and understanding how different kinds of seizures impact different areas. It’s about studying him to learn his early indicators so I can get him to a safe place. It’s about being the expert on how epilepsy manifests in his body, 365 days a year and 24 hours a day.
Epilepsy is fierce every day. We have become more fierce.
Epilepsy invited me to learn about my son in a way I hadn’t before. It encouraged me to find his patterns and work to support them rather than against them. It pushed me to accept that plans don’t work so well for our family; possibilities are where it’s at.
With epilepsy in our family, I see how important it is to really see someone. To listen and to respond and to process and to be open without judgment. I know that a body and brain that feel well are a body and brain that do well, and sometimes all you can do on a rough day is be present.
I appreciate how valuable acceptance is. He feels vulnerable when his brain is fuzzy, and he knows he can tell me about it and I will be beside him the entire time. He has learned to recognize his early indicators and talk about them. His anxiety and fatigue mixed up with revved up weirdness . . . I accept all of that as being a part of this experience with him. In that space without judgment, he can rest. He can experiment and recharge and do whatever else he needs to do while he reclaims himself.
When epilepsy moved in with us, I saw it as something to fight and vanquish. Now it is a partner – a member of the family. It has welcomed vulnerability and honesty such that we can say what we feel and what we need and know the other will listen and honor us. It has moved us to value our time and each other differently.
We have learned so much.
Epilepsy has been about getting to know ourselves and each other. Epilepsy has driven us to learn how to love differently.
Epilepsy gave me permission to accept what I could not understand.
November is Epilepsy Awareness Month. There are more than 40 varieties of seizures, and most of them don’t look like the convulsive seizure (i.e., tonic clonic) that is usually portrayed in media.