He looks so normal
I want to thank everyone who has watched our “Day in the Life” documentary. It is so hard for people unaffected by epilepsy to understand just how dramatically it effects EVERY aspect of our lives. Your supportive and caring comments lifted me up and I am so grateful. However, I do want to address one recurring theme in those messages: quantifying and comparing trauma and impact. To be fair, I did ask folks what they could relate to in the video – but this was not intended as an exercise in competitive epilepsy. I want to be very clear here, epilepsy sucks a whole freaking lot regardless of specific details. You or your loved one doesn’t have to have seizures every day, week, or month - or to have died from them. Someone with epilepsy can lead an outwardly ‘typical’ life: physically, emotionally, behaviorally, communicatively and the impact is still all-consuming and over-whelming.
So, when Carrie Buck reached out to me with a guest blogger piece about her experience with her son’s epilepsy, the timing could not have been more perfect. You see, her son is significantly higher functioning than Adelaide was but that doesn’t negate the struggle. My family’s story is tragic, but epilepsy doesn’t have to be a worst-case scenario to deserve to be acknowledged or seen. I could go on, but Carrie does a pretty fantastic job of making her point on her own…
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A few months ago, I saw Kelly’s post about guest bloggers. I paused, a sudden nervousness hitting me. Was I supposed to submit a sample to her? Then I read further: “Topics must be in line with past Inchstones by KC topics,” and I thought, “Oh, that’s not me. My son has epilepsy but he’s alive. He goes to school. He can feed himself. He’s not missing milestones.”
Except as I thought about it more over the next day, I realized maybe he is missing milestones, things he would achieve or be able to participate in – if he didn’t have epilepsy. And I reread Kelly’s list of sample topics: “epilepsy, medically-complex life, rare disease, disability, loss, grief…” While my “epilepsy, medically-complex, rare disease, grief” story looks different from Kelly’s, that doesn’t mean I don’t have one.
For example, despite the passing of almost a decade, trying talk therapy and EMDR, and writing about it (which my therapist said is a desensitization tool), nothing has totally healed the trauma of that first seizure…the one after which Cody stopped breathing, a little toddler corpse laying on my bathroom floor until the ambulance arrived. I can talk about it without crying now...usually...sometimes. I still get nauseous though. And anxious. At the same time, I feel something inside shutting down. A lid being very firmly pressed down on feeling too much. Remembering too much.
I was probably the only mom fighting a panic attack on the kindergarten field trip to the local fire station - which held an ambulance with little kids gleefully climbing in and out, THE ambulance that had taken my unconscious, grey child to the ER at 2 a.m. a few years earlier. The ambulance that came to our house again 14 months later after another seizure, the seizure that led to hearing, “Cody has epilepsy”.
Just as painful, I’ve also heard, “Taking epilepsy and putting it aside, here’s what I’m seeing...” And I’ve heard, “He looks so normal!” Both from school personnel who should have known better. Both of which diminished our trauma, our grief, our everyday struggles with two types of epilepsy, ADHD, five medications and their side effects, and an auditory sensory issue called misophonia.
I finally felt I wasn’t crazy or just making things worse than they actually were when a nurse at Cody’s epilepsy clinic noted, “He’s a thousand-piece puzzle.” Someone who saw severe epilepsy every day and yet validated our “he looks so normal,” not-severe-epilepsy experience. So yes, my story is different from Kelly’s, but I have experienced the various emotions and trials that go hand in hand with an epilepsy diagnosis.
In thinking about all of this, I realized that, even if the tip of the iceberg looks different, what lies beneath is similar for all of us impacted by epilepsy. And what lies beneath has the power to sink each of us.
Have you or a loved one had the label “epilepsy” attached to you? Then you know grief.
Have you dreaded the next seizure, whether the last was minutes or years ago? Then you know anxiety.
Have you heard someone joke about seizures? Worried what someone would think, how they’ll react to you saying, “I (or my child) have epilepsy” Then you know stigma.
One other thing I know is that I only started to heal when I started to talk about it. And in being open about something we had hidden, I heard other people say, “I don’t know anyone else with epilepsy!” And I saw a glimmer of healing start in their eyes too. No epilepsy story is the same. And no matter how “easy” your epilepsy story is compared to that of others, no epilepsy story is ever easy.
I’m friends with several moms, all of whom I only know because of epilepsy. None of our children have the same specific type of epilepsy diagnosis. Our kids have cumulatively tried virtually every anti-seizure medication (and most have failed several). The journeys include varying seizure types and control (or lack of). But when I see them, they get it. We all need someone in our lives who gets it.
So, don’t discount your story. Every epilepsy story matters. And maybe it’s exactly the one someone else needs to hear.