It’s difficult to imagine a large chunk of bone and brain missing from your child’s head. The movie reel is of a surgical pie spatula with serrated edges gently extrapolating the grade ‘B’ meat that has rotted my eldest son’s life for twenty years. I wanted this day, prayed for this day, but the reality that a surgeon will gleefully agree to saw his skull, make a hole, remove a lobe– this I’m less prepared for then I thought. I know the great events he could experience if he no longer seized, but also the great events if there were to be a human or non-human error. I know what can happen if we’re told ‘no, there will be no metallic feast on face today, Tina,’ no braaaaaaiiiiiinnnns for the gallery.
I did some research, and the Cleveland Clinic campus has a number of vegetarian restaurants/menu options, and we’re taking our shillelaghs for Notre Dame glory on the 15th. This will be a week for him to become a radioactive Strong Sad, and I’ll enjoy my warped vacation away from home, bills, and chaotic ennui of stay-at-home motherhood.
A week+ in a recliner, you ask? (You didn’t, in case you forgot.) I’m the child who wasn’t punishable. To my room? To the corner? I live inside my head, so please, mother, give me the quiet. If I tell the Boy I’m writing, or practicing my Russian, he may lessen the hours spent talking about snakes and swords. I’ve begun to plan what I’ll do to him for days and days while he is unable to move from underneath the wires on his head and radiation injections in his arm; he is a machine and I am his nightmare. If you haven’t heard the Javin laugh with a thousand drums in his throat, you’ve missed a great event.
This is where we were two years ago:
Most people feel some sympathy, perhaps some fear, when they consider what life with an epileptic may be like. Let me show you:
Epilepsy has it’s funny moments, too. Take this instance postictal where, despite the later cost to me, Javin stuffed himself between a louvered door and the dryer, a space about five inches, before he Hulked-out:
It’s difficult to describe what it’s been like to have twenty years worth of Asperger’s and epilepsy, but I could fill volumes with stories that redefine ‘special needs’ into something much more beautiful, unique, and usually hilarious. From the outside looking in, especially when added to the remaining herd I’ve birthed, living in this mode 24/7/365 appears unbearable. I’ve lived a thousand lifetimes where evolution happens in weeks or months rather than billions of years, and know it’s impossible to remain as you were in the beginning. There’s devastation in lost cognition and brain damage, but there’s hope, joy, and gratitude in learned sarcasm, practical jokes, and the vacuum for humanitarian service that pervades a person who has quite literally nothing going for him.
If I didn’t believe in God when I had him at 18 (I did), I would have by now; what we imagine of divinity has very little to do with what it really is– a spring of survival inside a bottomless well of suffering. We can wish it, wash it, will it away, but when I don’t have the luxury of enough money, time, or space to court escapism, and inebriation is too dangerous for days I may have to follow an ambulance or brace myself against 200 lbs+ of epileptic inertia at the top of the stairs, I have to believe that Joseph Campbell would qualify my call to adventure worthy of some greater reward, even if it has the banality of the Everyday.
Yes, Javin suffers, and he is a hero. But five other siblings have given up their mother for their brother, and have grown up to know that life doesn’t skip around and hand out picket fences. The ‘least of these’ have somehow managed to forge their own identities around their brother’s, without the slightest self-pity or resentment toward their lot.
Could we be so humble?