Today I got to take the “Mr. Marketer / BrandChef” hat off for the afternoon and spend it at the Iowa State House with my wife and my eldest son to lobby for a cause that, over the last year, has become very dear to our hearts – The Epilepsy Foundation.
The Epilepsy Foundation, with no budget, little staff and less awareness, threw our family a buoy after we discovered our son had epilepsy. They cleared blinding smoke, helping us find direction, community, support and confidence in a future of living with epilepsy. Without The Foundation, my son, my wife and our whole family would be marred in a broken medical system loosely supported by an even more broken political engine – one that seems to have put the well-being of its citizens, especially those most in need of support, on the negotiation table, cutting funding for The Foundation and it’s programs as well as struggling to pass Iowa Senate Bill 374, assuring safe medication and product selection for patients.
So, with a dozen-or-so other parents, young adults and advocates living with Epilepsy, we stood in the basement of our glorious State Capitol handing out 6″ Styrofoam plates of fruit and vegetables and lemon cake in the hopes of bending an ear to listen to our cause. With any sign of interest came a plea from our group for support and a vote as well as a handy bookmark outlining, in quaint black and white line art, the signs of a epileptic seizure and what to do in case you’re confronted with a moment having to “deal with one.”
“What would you do?”
For me, it was humbling. See, I’m a “professional communicator.” I engage in “solution-chat” on a daily basis. Talking intangible concepts to C-Level sorts (and those whom aspire to be) is in my blood. And bringing attention to issues that “need change” (albeit the bottom line and sales in most cases) is the return on my daily investment. But today, for those around me, the ones that carry the flag and work in the trenches with The Epilepsy Foundation, it was another day of darting glances and humiliating small-talk in the hopes of bringing attention to their case. So we stood in line, dishing up “did-you-knows” for glossy-eyed mumblers taking a break from the monotony of their civic duties upstairs… where I assume they left their compassion. But at the front of the line, in the face of the politi-zombies meandering through the buffet line, with all his charm and fresh, sweet optimism was my boy.
My son, Simon, who just a year ago was running the fields of Carlisle Middle School, kicking a soccer ball with his teammates when he suddenly froze, fell to the wet, mud-soaked grass, stiff as a board and started to have a tonic-clonic seizure. What we used to call a “grand mal” seizure, the homogenized tonic-clonic swept its way through my son’s brain and through his nervous system, causing every muscle in his body to contract and convulse in ridged, staccato jerks. While his mental “reboot” took only a few minutes, the recovery and the subsequent path to lucidity took a good 15 to 20 minutes more, stretching to his first ride in an ambulance and a good, long stay in the pediatric emergency ward of Mercy Hospital. Since that day he’s had a dozen more tonic-clonic and uncountable “absence” seizures. Some were less severe, others were frightening to watch – let alone imagine experiencing. He is a reluctant veteran of epilepsy now. At 13, he held his head high and shook hands with the legislators of the Iowa State House and told his tale of determination and the fight to live a “normal” life with epilepsy.
I couldn’t be prouder of my son than I am today. He’s my hero. He’s my guiding light. In the face of all that seems impossible, my son, my 13 year old boy, stands with his shoulders square to the world and says, “I can deal with epilepsy. I can deal with you.” Fearless and forthright, “I’ll shake your hand, be your poster child and play your game, because I can deal with you. I am strong, and this is my case”
And I watched as men 5x his age walked on more interested in getting the last piece of lemon cake than caring about his cause.
But I’m old and sour to reality. I see what a 13 year old won’t. I see what Man has built and is ashamed of owning.
To my liberal, overtly sensitive heart, “living with epilepsy” shouldn’t be politicized, campaigned on or against or delegated to or from any one political party to another (if they would have it). But in the true form of American due diligence, from 6 to 60, we lined up, kissed ass and palm-pressed with the best of ’em. We chased legislators up and down the stairs of our great, golden dome. We waited for announcement and entry into chambers, “off-limits” to the common man. And in the end we were addressed face-to-face by Senator “So-n-so” of “Who-gives-a-shit” and given 10 minutes to watch him ebb and flow from lucidity himself, as he tried to show he cared.
SO where does it go from here? Who carries on Simon’s and The Epilepsy Foundation’s cause?
Our political structure, as flawed as it may be, allows some actionable items that can be an agent for change.
Contact your local representative and tell them to get the funding for programs like The Epilepsy Foundation BACK into their budgets. A simple $100,000 bump (as Senator Jack Hatch’s efforts showed) would make a years worth of funding possible for many of these struggling programs and create strength among those afflicted with epilepsy and any number of medical conditions. If you don’t know WHO your Iowa State representative is (like me, until today) HERE —> FIND YOUR LEGISLATOR.
And tell your representatives to vote on and PASS the Iowa Senate Bill 374, assuring safe medication and product selection for patients. This bill FORCES the medical system to regulate medications both generic and branded to the SAME standards allowing patients to have confidence they are taking the same mixes, dosage and is compatible with the same drugs as prescribed by their doctors!
Do it today. Take a Pause… For the Cause.
Andrew B. Clark
Simon’s Biggest Fan