Smell the roses

It was a helluva decade, my fifties, some of the greatest ups in my life and some of the scariest lows. As it wore on, epilepsy inevitably began to dominate, the damage of a lifetime, and memory evaporated, and executive functions, and finally the ability to hold a job and even write articles. If you’re epileptic you know it’s gonna happen, you just hope it waits till later, much later, but it happens early, too early. Hell, it was giving me huge problems in my late forties, just when my life’s ups were becoming so up. I just hid it well, so I could keep working and getting writing gigs and not look like a spaced out fuck up. One of those.

But the real downside is the financial cost. You have no idea how expensive epilepsy is. Between the cost of medication and finance charges incurred taking out loans to buy the damn medicine–I couldn’t function without it, couldn’t drive, would be scary–it has cost us $40,000 in three years. And that was just for the medicine. Figure in the loss of income this past five years and the total cost gets into the hundreds of thousands. Hundreds of thousands of dollars. She’s already disabled. Still, we went from being a successful hard working middle class couple, completely self-made, to having little more than a roof over our heads and epilepsy incurred debts that suck up every loose penny. And you can’t get disability for epilepsy unless it is incredibly severe…and I’m not, I’ve just got a lifetime of damage that leaves me about as useful as a burnt out computer. You can’t get any assistance at all. No relief on utilities. No nothing. It’s just like being a normal person, except I can’t work.

So we enter our sixties flat broke but with a roof over our head. Rent control is such a blessing. But otherwise we have no idea what will happen next. The last decade was a series of surprises. You get fatalistic. I never was before. I am now. You just expect the worst and when it comes you shrug and deal with it, if you can. Though neither of us have the brain capacity anymore to deal with much of it. We just blink and wonder what to do.

Still, she just came back from the store with a steak and a six pack of beer and a bouquet of freshly picked flowers from the hillside, and there’s a mess of vegetables of all kinds from SuperKing and we’re going to have one helluva birthday feast. Life is good. I mean life is fucked up, even doomed, but it’s good, and we both take it a day at a time and stop and smell the roses.