November is Epilepsy Awareness Month and I apologize for not posting earlier. I really tried but found myself bored while reviewing the usual. All stuff we need to share, I’m sure, but I just wasn’t feeling any of it.

Struggling with my motivation and finding a topic to create awareness around, I sat down to write and decided to simply start where I’m at. Checking in I noticed I’m really, really tired and fairly grouchy. That’s a huge improvement, was the real observation. Even though my son has been doing great for a while now, I honestly feel like I’m just beginning to recover from my bullshit journey with our favorite tormentor, epilepsy. So I thought I’d take this opportunity to shine some light on the mental health of us parent/caregivers.

All art by Jackie Dunn Smith
Flying Panther Tattoo

I’ve been wanting to write about this for some time, which is why I introduced you to Elizabeth, Cindy and Mary Lou a few months ago. When we all met for breakfast, my child had been seizure free just over a year and I still felt like a hot mess. They have been living with epilepsy for decades, with so much grace. “How is that possible?” my broken self wanted to know. I unexpectedly ended up in such a deep, dark place afterwards that I emotionally couldn’t revisit our discussion to write about it. They each have such bold, beautiful lives that just hearing what they’re up to was reassuring for me. But learning more about how the trajectory of this disease has played out over the long term for each of their children was arresting. Cindy Mitchell and I engaged in a lot of talk across the table. Its been years since her son was seizure free, but he has been before. For years. And now he’s not. Gulp.

Even in their comforting presence, everything inside my body screamed, “I AM NOT UP FOR ANYMORE OF THIS.” And I noticed that I’m still bracing for the next seizure.

I wonder if I have been coping with my own version of Post Traumatic Stress Disorder. This diagnosis breaks down common ways people respond after a traumatic event, including symptoms of re-experiencing, avoiding, increasing arousal (i.e. irritability and hypervigilance), and declining mood or cognition. You can read more about the symptoms here. I can label my experience since I’m on the other side of it, but while we were in the throws, the seizures and accompanying trauma were coming at me so fast I didn’t know what was going on or how to cope. Caregiver burnout is a baby form of what I experienced.

Jill Hitchman Osborn, who writes a raw, beautiful blog about intractable epilepsy, notes the inadequacy of the PTSD diagnosis in meeting our needs. She created a new distinction for us called SN-TSD: Special Needs Traumatic Stress Disorder. She correctly observed that what sets SN-TSD apart from PTSD is that the traumatic event is never “post.” It’s current, chronic and unrelenting. In fact, another key, defining feature is that not only do the traumatic events never go away, they can’t go away. So experiencing trauma becomes a typical and regular occurrence, despite all best efforts. That in no way ever makes a seizure normal or no big deal, it makes life a war zone.

I’d like to continue Jill’s conversation. Clinical languaging found in the definition of PTSD can’t even begin to describe the absolute sickening, horror I felt physically, mentally, emotionally and spiritually every time my son seized. In combination with the depths of my vulnerabilities, the level of constant pressure felt far more extreme than “stress.” And to describe our responses as “disordered” seems kind of hurtful and uninformed. Any otherwise weird reaction makes perfect sense under these circumstances and I challenge anyone to hold it together any better. No label captures the experience of watching the darkest, scariest, shadow permanently attach itself to your child. A shadow in the form of a disease that beats them up all day, erases who they are and might even kill them in their sleep. The closest I can get to reworking our own special diagnosis is “Chronic Horrific-Trauma Integration Experience.” Or just “f*cking bullshit” works too. Not that I need a diagnosis for being real, but they are useful for suggesting interventions.

Along these lines, I have an interesting intervention I’d like to throw out there. My friend Jennica Mills is also a social worker and she specializes in treating trauma. Her approach, called Neurogenic Yoga, sources the body’s innate ability to restore balance to the fight and flight system. It feels important to share because it is a fairly new and different treatment option that is unlikely to have landed on your radar. Interestingly, war veterans are finding it very effective in treating PTSD.

It is based on a combination of yogic wisdom and Dr. David Berceli’s “Trauma Releasing Exercises” (TRE) that are designed to encourage a physical tremoring that releases muscular tension. The theory is that this gentle vibrating calms down the nervous system and helps to release the deep chronic tension created in the body during a traumatic experience. I encourage you to watch this video to learn more.

Like I said, it is unique but something about watching all those soldiers in army fatigues tremoring in a group setting made it seem like something I could try at home alone. Frankly I would have tried almost anything to get myself back and my results have felt like a damn miracle.

The key to healing trauma is found in empowerment and that’s exactly what this treatment provides. Jennica taught me what to do in a handful of sessions. I now do these simple exercises by myself, often when I can’t sleep, and within seconds my anxious, distressing symptoms go away. I have yet to find a meditation technique or medication that works as quickly and effectively. Who knew?

Good “self care” is key to building resilience and I am grateful to be able to add this to my routine. It’s critical to take any minute you can find to reconnect with whatever it is that comforts you. Chiropractics, Zumba, yoga, essential oils, energy psychology like Advanced Integrative Therapy and TFT, reiki, church, hiking, clean diets, medication, EMDR, Cognitive Behavioral Therapy, bibliotherapy, Dr. Wayne Dyer’s I AM THAT I AM meditation, babysitters, a good cry and getting us all together (sometimes with a bottle of champagne) are other ways the moms in our group keep sane.

Being with parents in our same boat helps a lot. We need support from people who get it, but we need compassion from our families and larger community too. We often don’t find it. Friends and family getting lost in the fall out of epilepsy is a common theme. I get that our challenges can be so frightening and ugly that we can be intimidating. But it shouldn’t be that hard to support us and we can help you along. Jill breaks it down for folks here. I liked her suggestion not to ask if you can help, but to just help if you see a need. I also resonated with her request to save the platitudes. “Silence at least conveys the gravity,” she writes.

Being the parent of a child with intractable epilepsy is traumatizing. Learning to live under these conditions is . . . I have so much reverence and respect for all of us. Please be gentle with yourself, this month and always.