Violet Femmes Ragnar Relay Team 2016
It’s September, so my Facebook feed is full of parents bemoaning their newly emptied nests. I am, quite frankly, jealous. When you're dealing with a child who has suffered tens of thousands of seizures, the future is a confounding mystery. Can she learn to manage her medications on her own? Would anyone ever want to room with a girl who seizes in the middle of the night? How do I prepare her for a life with limitations?
When our daughter Virginia was first diagnosed with epilepsy in 2004, we never imagined it would be this hard. It's been 12 years and we still don't have any answers. I have a file full of hospital bills and invoices from therapists that underscore the financial burden of it all. But how do you count the opportunity costs?
If Virginia is stuck at home when all her friends head off to college, the damage to her heart and soul will be so much greater than what her brain has endured. What if she has to give up her hopes and dreams? What if she can't go to Carnegie Mellon or Central Florida (long story), the schools she talks about so wisfully?
If she can't live up to her full potential because we couldn't stop her seizures, what will I say to her?
The people I know who suffer seizures and those who care for them have faced staggering opportunity costs. Here are just a handful of the sacrifices I know about:
“Epilepsy scares me more than any combat mission ever did—so much so I haven't gone out and had a beer with friends in 10 years.”—Army combat veteran who developed epilepsy after suffering a gunshot to the head in Baghdad in 2007.
"Before my first seizure, I was a completely different person. I loved my life. But after starting the drugs when I was 17, I stopped having emotional highs and low. I feel like a drone or a zombie that just goes from one day to the next. I can’t make plans with friends because I never know how I am going to feel on any given day."—30-year-old man diagnosed at age 19.
“The stress of epilepsy is what takes its toll on me. I never know when he may break through the meds and have another seizure. Will he have a seizure while swimming? While running and playing? At the beach or river where medical care is farther away? Or worse, when we’re all asleep and we don't know it’s happening?—Mother of 9-year-old boy diagnosed last year.
“On May 3, 2010 I gave up my driver’s license because I had a seizure while driving home. And I had to transfer colleges after my sophomore year because the doctors couldn’t figure out why I was seizing. I had to move back home with my parents.”—30-year-old woman diagnosed at age 19.
"Before epilepsy, I never imagined I would question my intelligence the way I do now. I spend a lot of time wondering if my brain will ever operate as it once did. I feel as though I am mourning the loss of who I once was." 31-year-old woman diagnosed at age 27.
I can't even begin to fathom the sacrifices of friends whose children are nonverbal and in wheelchairs. Or the friends who have lost children before they even had a chance to start kindergarten—nevermind college.
It doesn’t have to be this way.
Epilepsy is not beyond a cure; it is simply—and tragically—underfunded.
Remember, epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's combined—yet receives fewer federal dollars per patient than each of these.
Please help me close this funding gap by sponsoring my Ragnar relay team, The Violet Femmes. For the third year in a row, we’re running the 200 miles from Cumberland, Maryland, to Washington, DC. All the money we raise goes to CURE, which funds desperately needed epilepsy research.
We’re running for everyone who has ever lost an opportunity or a loved one to epilepsy. Please join our team.
If you think this page contains objectionable content, please inform the system administrator.