Make my (awareness) day

Miss A’s look of shock at my surfacing anger…not really but gosh is she cute in this pic

This week I started to see reminders in my inbox and social media feeds that International Epilepsy Awareness Day was just around the corner, February 10th. At one point I think I let out an audible groan. Wasn’t it just epilepsy awareness month? Is it already time for another awareness day? I felt overwhelmed by the need to do something and underwhelmed by my desire to advocate. An Eeyore cloud settled over me and then, for the first time since Adelaide died, I felt anger. I’ve been waiting, even wanting for the anger to surface. You learn early in acting classes that anger is a much easier emotion to play than sadness and it’s true in real life too. Anger felt like a relief. We had been grieving Adelaide for so many years even prior to her death that I wasn’t sure that it would ever surface. Then, this week there it was, grinning back at me like Jack Nicholson in The Shining: Heeeere’s Kelly! All purpose, no BS.

While sadness had sucked the energy from my very being, anger somehow gave me life. Is this a healthy response? Unclear, but I’m running with it. I channeled the anger into the productivity I’ve been craving. In that moment I acknowledged that, yes, there are, in fact, many advocacy days, weeks and months, and perhaps that can be overwhelming or even annoying at times. But you know what? I don’t care. Until you’ve held your loved one while they’re seizing and there is nothing you can do to stop it. Until you’ve gotten the phone call that your loved one has had a seizure and you weren’t there to comfort them. Until you’ve sat across from a doctor pleading to find a research trial for a new med because none of the other treatments have worked. Until you’ve reached an unimaginable level of grief and desperation, you don’t get to have awareness fatigue. Or maybe you do, for like a day, but then you should probably move past it. Because those days give someone a voice, an identity, a community. Basically what I’m saying is that yeah, there are a lot of epilepsy awareness days and I am going to try and own every single one of them until we get the answers that will prevent these moments from occurring every day around the world to the 65 million people diagnosed with epilepsy and the countless others affected by proxy. Whew.

Three amazing must reads

Also, hi, it’s me, I’ve never needed a reason to talk about epilepsy but I’ll take a good advocacy day if it’s handed to me. So, wear your purple. Educate a stranger about epilepsy, (yes a seizure disorder is the same as epilepsy, yes there are many different types of seizures, yes you can die from epilepsy, no there is no cure). Donate to the epilepsy charity of your choice (this one happens to be near and dear to our hearts). Buy one or all of these books: After That Day: Stories of Epilepsy or Visions: The Inspirational Journey of Epilepsy Advocates or A Mind Unraveled. Read them then gift them to a friend, a doctors office, or your local school. Take a minute to learn epilepsy first aid and then teach it to someone else. Whatever you do, fight like hell for your loved one, for yourself, and for the 1 in 26 born today that will be diagnosed with epilepsy in their lifetime if we don’t find cures.

My two favorite young advocates, Purple day 2019

So, yeah, I’m angry. I’m angry that we still don’t have answers, that people are still having seizures, that my daughter had to suffer with one of the oldest recorded conditions and we were helpless to stop it. Her condition was neurodegenerative, meaning epilepsy itself didn’t kill her. But how much could we have improved her cognition and quality of life had we been able to control her seizures? Could we have slowed her brain degeneration thus lengthening her life? We’ll never know for sure. But the next time you are overwhelmed or annoyed by the next awareness day/week/month of the moment, remember the people that day is for and maybe try and learn a little more about that condition…. Or I’ll unleash my Eeyore soddened anger wrath on you. JK…maybe.