On Tuesday we wear purple
Next week, on Tuesday, March 26th, the epilepsy community comes together for Purple Day, one of several epilepsy awareness days throughout the year. While my commitment to this community certainly hasn’t waned, I recently had to acknowledge that my sense of urgency has. Perhaps this is to be expected. I’m no longer administering medications five times a day, fighting with insurance, or holding my daughter as she seizes.
In years past, our family spent Purple Day visiting Jackson’s school, with Adelaide in tow, where we would read a book about epilepsy, answer questions, and try to bring awareness one classroom at a time. Between the pandemic and grieving, it’s been years since we did anything like that. This year Jackson’s spring break falls over Purple Day – though I don’t imagine he would be as welcoming of us coming to his middle school to talk to his classmates about epilepsy as he once was. Perhaps next year I will try to resume this tradition with Anessa’s kindergarten class.
This lapse in my advocacy urgency was brought into focus a few weeks ago when a friend reached out to me with a slap in the face. Not literally, but it was a wake-up call all the same. Her friend’s grandchild had recently been diagnosed with a specific kind of epilepsy and was having uncontrolled seizures. They were working with a reputable medical center but weren’t getting the help or answers they were looking for and were understandably terrified and upset. Aware of how intricate various epilepsy diagnoses can be, (if you know one person with epilepsy you know one person with epilepsy) I connected her with a friend who has a child with the same kind of epilepsy. And then I moved on to the next item on my to-do list.
Of course, that worried family couldn’t just move on. I’m embarrassed to admit this, but when I was first told that the child was having multiple seizures a day, but they had a diagnosis and an epileptologist, my first thought was, “yeah, that sucks, but that’s epilepsy (insert shoulder shrugging emoji).”
What is wrong with me?!
Before I tie myself to the stake I have to remember that at one point Adelaide’s seizures were so prevalent that they had to last for more than 20 minutes before I became alarmed enough to call her doctor. She had to be unresponsive with low oxygen levels that I couldn’t bring up on my own before we took her to the emergency room. This was our regular life, our normal. Despite all my efforts to mitigate them, daily seizures were as common as Jackson forgetting where he left his shoes.
But it shouldn’t have been this way.
Any number of seizures is too many seizures. Families are desperate for answers, treatments, and cures and they are not coming fast enough. They don’t get to be jaded and we shouldn’t be either.
When I was preparing for last week’s blog about the early days of the pandemic, I came across a post created by an epilepsy mama featuring photos of medically complex epilepsy kiddos holding signs that read one word of the following statement, “We’ve endured the unimaginable more than most will brave in a lifetime. Covid-19 should not be added to our list. Please stay home.” Of the children in the post, I was able to immediately identify three who had passed away from epilepsy-related conditions. Three - that I knew of.
The strength that it requires to care and advocate for our children, to create a community, and then look on helplessly as community members grieve the loss of their beloved child is almost unfathomable. Except it’s not because I know hundreds of you who survive, thrive and keep on keeping on, each and every day.
So, next Tuesday, March 26th I ask you to wear purple. To educate someone about epilepsy. Share an epilepsy-related post and talk about someone you know or love who is affected. Make it personal. Donate to an organization like CURE Epilepsy which is fundraising and funding research with a sense of urgency we should all strive to achieve.
The road ahead of us is still a long one, but that doesn’t mean that our goal of a world without epilepsy, a world with no seizures and no side effects is not attainable. It just means we have to be a little louder and a little stronger for a little while longer.
Written in memory of Ozzie, Ellie, and Zoë
Photo ID: Jackson and Adelaide ages 7 and 3, lying next to each other on Adelaide’s bed with Jackson kissing Adelaide’s cheek. They are wearing matching purple t-shirts with a Minnie Mouse head outline and Mickey Mouse gloved hands making a heart shape. Below the hands are the words “epilepsy awareness” written in the classic Disney font.
