“Three years ago, epilepsy came into our lives with no warning. We were unprepared. We weren’t ready.
But we’ve made it through. And we’ll keep making it through.”
Those were my words, just about a year ago. I wrote them near the end of a piece detailing the three-year struggle since my eldest daughter, Amelia, was diagnosed with epilepsy. I wrote that piece, and several that followed it, as part of an effort to drum up support for the first annual Salt City Walk for Epilepsy and to help raise awareness and understanding of this often under-discussed and misunderstood condition.
Those words, and the ones that followed were part of my efforts to make a difference, albeit a small one, in the fight against epilepsy. My family and I were determined to make something positive out of everything we had been through. We raised over $600 for the Salt City Walk and parts of that piece I wrote became an appeal letter for the local Epilepsy Foundation.
I was so determined to really do something that I created a new blog called Team Amelia, named after our “team” at the Walk, and began doing research into starting a not-for-profit foundation. I even listed myself as an “Epilepsy Advocate” on my LinkedIn profile.
And then… something happened.
Or, more accurately, nothing happened.
This past January, we took Amelia to Strong Memorial Hospital in Rochester, NY for in-patient monitoring. She had been struggling for months with an inability to sleep, behavorial and emotional issues, and a series of symptoms we were convinced were signs of seizures. For the better part of a week we stayed in the hospital observing and watching, being observed and watched, and doing everything we could to provoke Amelia into an “episode.”
In the end… well, in the end: nothing.
She was exhausted. She was suffering from sleep deprevation. She had abnormal activity in her brain, yes, but they were “benign” discharges. She wasn’t having seizures.
In fact, the idea was raised that she might never have had them at all. (This, despite countless EEG scans showing them and the fact that my wife, mother, father, and I allsawher have at least one.)
I wrote one more piece after that. And then, until just recently, I shut it down. From January 22 to July 1, I didn’t write a word. I didn’t advocate. I didn’t fight. I didn’t demand second opinions or argue with the doctors or take her to yet another hospital for yet another test.
I crawled into my metaphorical bed and pulled the covers over my head and tuned out the world.
To most, that would make no sense. Most of our family members were overjoyed. This was wonderful news, they said. No seizures is great, they told us. We prayed so hard nothing would happen while you were in the hospital, they said. Aren’t you relieve, they asked.
In a word? No.
My wife termed it a setback. I had several more colorful words for it, some of which even had more than four letters. But no matter how we referred to it, it always amounted to the same thing.
We were back at square one. No idea what was happening. No idea why. No idea how to make it stop.
We – I - bailed on the fight.
People far more charitable than I will argue that isn’t true. They’ll point out just how hard this has been over the last four years. They’ll cite everything we’ve gone through and everything we’ve done for Amelia. They’ll point to the strain it’s put on our family and the stress and the toll it has taken on all of us.
We can be forgiven, they’ll say, for stepping back a little.
But we can’t be. Because in a fight like this, you can’t just quit or take the day off , or – in my case – five months.
Which is why now, with the 2012 Salt City Walk approaching this weekend, I’m not asking you to support Team Amelia. I’m not asking you to help us.
I’m asking you to help the people who never take that day off: the staff and specialists and counselors of the Epilepsy Foundation. The ones who have worked tirelessly, not just to get the Walk up and running, but to raise awareness on a daily basis. They’re the ones who devote their days (and night and weekends) to fighting the disease that has tossed a pipe bomb of confusion, fear, and uncertainty into my family.
They’re the ones who train the first reposnders on how to deal with an epileptic seizure.
They’re the ones who spend hours scouring the Internet to find useful information and things we ought to know.
They’re the ones who help coordinate services and assistance for those who, unlike Amelia, might not have anyone else to help.
They run Camp EAGR, a special place where children like my daughter can go and be with other kids who are facing the same sorts of struggles and fears. A place where those kids don’t have to feel alone, different, or isolated.
They’re the people who set out every day to raise awareness so those kids and adults and their families don’t have to feel different or stigmatized no matter where they are.
They are people like Sarah, my contact at the local Epilepsy Foundation who, despite not hearing from me for months, remembered me and my family well enough to send us a personal letter when we signed up for this year’s Walk. Remembered us enough to ask after Amelia, and upon hearing hor rough the last year has been for her, promised to introduce me to someone at the Walk who might be able to help.
These are the people I am asking you to help. The people who never crawl into bed and pull the blankets up over their head. They don’t hide. They help. This Saturday, when 260 (or more) people walk in Onondaga Lake Park, Sarah and her co-workers and colleagues will get a first hand look at just some of the good they do.
One day hardly seems like enough.
Team Amelia will be among those 26o people. This year we’ve gone from four to sixteen walkers, and we would love some more. We want to do our part to raise awareness and funds to help in this fight. And we’d like your help.
Please take a moment to donate. To register and walk. To join Team Amelia and all the other teams of walkers in a show of support, not just for those like Amelia who suffer from epilepsy, but for those who work every day to help them.
Last July I wrote about what three years of living with epilepsy had taught me. If this last year has taught me anything, it’s this: the fight is harder than you can ever imagine.
Please join me in doing what we can to make it just a little bit easier.
To show your online support, like or join Team Amelia on Facecbook.