Yesterday, I took my three kids to our local Epilepsy Foundation Family Picnic. To tell you the truth, I dreaded going, particularly after Sophie had her usual morning seizure and remained clammy and drooly for a couple of hours afterward. I felt obligated, though -- obligated because I had told the foundation that I'd be there, and they have so many good people in that organization. I have taken a sort of sabbatical from all things epilepsy during the last year, giving up my positions on the boards of these organizations and limiting my work as a writer and advocate to only paid contracts. I didn't even participate in last fall's epilepsy walk, and aside from some private counseling for new families, I've steered away from formal activities, fund-raising and even the mustering of excitement when new drugs and therapies are announced.
I'm burnt, to put it mildly. Burnt and jaded and profoundly cynical and certainly not optimistic that Sophie's seizures will ever abate through traditional means.
Yesterday, I met some new families, wonderful parents and children who are all struggling with this terrible disease. Despite advances in treatment, though, and all different modalities, including diet, drugs and surgery, I didn't talk to one parent that wasn't overwhelmed and one child that didn't appear drugged, drowsy or just plain out of it. I have no idea what the answer is, and the older I get and the more years of doing it, the less engaged I become. I imagine it's a survival mechanism -- a means of living day to day when a more appropriate response might be a continual wailing and gnashing of one's teeth and perhaps some homicidal thoughts toward the drug industry, the callous doctors, the ineffectual systems in place, and those systems that are completely lacking. When you throw in the relative indifference of the political system and the culture in general to the plight of the disabled and the strength and perseverance it takes to continually advocate and fight for a better life for your child, yourself and your family -- well -- there is, if not a breaking point, then certainly a point of surrender when you can't think about or do it anymore.
Yesterday, I sat and had a slow, labored conversation with a very sweet young girl who had started seizing when she was five years old, out of the blue and for no reason. She was eleven now and according to her mother had been on thirteen drugs, been through brain surgery, wore a vagal nerve stimulator and was just initiating the ketogenic diet. She was also on two anti-epileptic drugs that, along with the seizures, made her speech and reasoning slow and her eyes dull. I also spoke to an adult who had a stroke during her second pregnancy twenty years before. As a result, she had epilepsy that was difficult to control and was on several medications, and while she was cheerful and active, there was also something off about her, something I couldn't put my finger on, a missing filter, perhaps. She told me that the new drug that she was taking, Vimpat, made her feel terrible -- nauseous, irritable, dizzy and headachey. Sophie takes the same drug, and while it helps her seizures somewhat --
I think -- I agonize over the side effects and wonder just how shitty Sophie might feel.
Depressing post, right? I'm just getting it out, plucking the words, attached to vague and nauseating feelings that I, and apparently most, parents of children with uncontrolled seizure disorders and other disabilities probably share.
I suppose it's good to be in a beautiful park, a camp setting, with your family and many other families who share your life in some respects. I didn't know, though, whether to feel camaraderie or incredible isolation. I guess I felt both. Sophie couldn't do most of the activities but loved walking in a giant field of grass.
A little later after this picture was taken, I was encouraged to let her experience a zip-line, and while she seemed to enjoy it (her intake of breath and startled expression told me) -- I felt more like downing a shot of liquor, straight-up, watching her.
Henry and Oliver participated in the teen activities, mingling with other siblings and older children with seizure disorders. Their dare-deviltry included climbing walls and other acrobatic feats -- and while Oliver froze at the top of a very, very high structure and had to be coaxed and talked down by two heroic young men who firmly talked him out of a rising hysteria, I never felt anxious watching him.
I'm grateful for that.
Henry scrambled up all the structures like the athlete that he has become. My stomach lurched, once or twice, when he yelled for me to
LOOK! but otherwise, I felt only pride at what my boys have made of their short lives.
I have no idea where this post is going other than to describe a day where I held both anger and lassitude, fear and content, despair and hope, resentment and gratitude all at once, in balance, in either hand, a lifetime shortened to five hours in a verdant park in an inchoate city on one tiny, spinning planet in a vast universe.
