Take four Dilantin (take four), two Clonazepam (take four), three lamotrigine (take three), six different hormonal concoctions, an array of strong pain medications (take 8 of one, four of the other at a high milligram dosage) for layover cancer pain from too many surgeries, mix all with water and a small amount of food– ah, the caveat, you may require that nausea medication to keep all of this down and as I recently found out, between all of the pills, this amounts to a handful of pills every hour on the hour, no shit.
No, I am not some television watching hypochondriac who just has to try the latest medication to be fashionable. I am technically, still a cancer patient who has a rare autoimmune disease and a form of epilepsy (temporal lobe) that is, these days anyway, totally out of control and has, for the past year, left me seizing practically every day, unable to make sense of my world and more importantly perhaps, unable to communicate in any real way with those around me.
This year alone I have had status epilepticus several times (that’s several times I could have lost my life – or to be honest, every seizure is a potential life-costing event or at least, life altering, depending on the severity ) but we go on. We troop on and I do not write now for pity, because pity does nothing for me at all and besides, pity is boringly monotonous and the same and the same and the same and no, I don’t’ want a marathon or walk held in my name or any such thing unless it is to raise money for the epilepsy foundation, long forgotten because we lack the glamour of the more exotic diseases and besides, epilepsy is still so poorly understood.
But I don’t care about that right now. I’m not on any kind of crusade to get epilepsy recognized. All I feel is the weight of this back-breaking depression that weighs on me more and more every day, leading to dreams of my dead brother (suicide), dreams in which I join him, or beg him to let me join him because it seems like the better alternative at the moment because I have become not simply a burden unto others (though that in itself would be enough), but a burden unto myself, and that part is unbearable. I am at a loss. It is so simple… I am at a loss…
I write now because I have to try, because these days, no matter what I read, no matter what I watch, no matter what news I read and plan to write about or how excited I am in the moment, when push comes to shove, the only thing on my mind is this: this extreme fatigue, this vicious epilepsy, this unbelievable head pain that leaves me vomiting too many nights, limp and hanging over the toilet, the drug side-effects that no, I cannot live with even if they will save my life because the cure in this case feels worse than the disease and no matter the disease may kill me, what’s the difference whether I decide to kill me or the disease does? In the final account, doesn’t it add up to the same thing? I think it does. Nor do I wish, contrary to what may seem to be the case, to spend the majority or even a small portion of my life tucked and settled in bed under the blankets, safely sleeping away because I am simply too tired to function. I want work again, a fulltime job, a thing to throw myself into and i actively seek it hard; aggressively and things are looking hopeful. I find myself praying and thinking constantly of ways in which i can improve myself or my odds of finding such employ – i try. I try harder than i have ever tried, and i know, logically, that this to will pass, only it does not feel that way at the moment. At the moment, it feels like sinking, deeper and deeper.
A friend said, “You used to be so vital. I miss that you.”
And God, can I tell you how much I miss that person? That it seems years since I saw her. That I miss her.. Has it escaped the mind of anyone who loves me, and yes, I am grateful they care, but really, do you think that this is easy for me? That living a perpetual zombie with pasty pale skin and circles under my eyes and virtually no personal affect whatsoever is any kind of way to live? I am told not to work. I am told not to do a lot of things, yet still, I do them or I attempt to do them. Despite doctor’s advice, I am still looking for a job and even though epilepsy is largely why I lost my last job, amazing to see how much prejudice still exists in the workplace: had I had a child, I would be given several months off with pay. But since I just had seizures for several hours and lost and confused and scared and I could have died, then the hell with it, it’s easier to just get rid of me because the truth is just too hard to grasp and epilepsy, like being overweight, often seems to me one of the last acceptable prejudice.
I used to write every day – an article, several poems at least. Even if it was shit, and some of it was, I wrote, and even if this is shit, it is my attempt to try to regain, to get back to some semblance of order, of something good, because the truth is, I do have that file for story ideas and some of them may be damn good. The problem: I just can’t seem to wrap my mind around them – they seem to complex in the moment, in the now. This is how epilepsy toys with the brain, either that or I’m too tired, or the medicine is affecting the way my synapses fire and so my thinking is dulled, short, slow. I feel an idiot. As Lewis Carroll, himself an epileptic, on seeing an epileptic in the village called him “A mouthing idiot…” Is this what I have become? Or is this what is to become of me?
Christ, I know this is absurd. that there is no reason at all to think I’d become an idiot, that in fact, it has always been the reverse – that epileptics were capable of great artistic expression and so on, and yet… those were epileptics who went largely unmedicated and who refused their medicine and who were noncompliant and who contrary to what the doctor’s orders were, went on to do their own thing and though yes, many of them wound up committing suicide for the correlation between epilepsy and depression is a strong one, they still managed to do great, great things in their lifetime and things that will not be forgotten.
Would I, not on medication, be capable of the same? Perhaps, though I find it doubtful. On medication? Impossible. I find it difficult even to stay awake and I write this now as a means to an end. As a way of coming home again, because I miss writing here every day, or almost every day as memory serves, because I still have that file of ideas and some of them are good and while undoubtedly, some of them do suck, I know that I could, perhaps, find my way back. That although it’s medication every hour on the hour and although it is mind-numbing and I am so full of fatigue and I am tired of this, I also know in some ways that I am still relatively young and while these days, I feel like an eighty year old (or more), a shut-in, an introvert, a shy old lady, an unproductive sloth – this from someone who used to be of the most productive people, or so I was told – I am tired. I realize this article, perhaps like my thinking, may be dull and boring in which case I simply ask that you not read or not comment because I already know all of the catty, nasty things that can be said because I’ve already said them to myself. I do every day.
That said, I hope this is a beginning. I hope I am finding my way home. I look upon this as mere practice.
thanks for reading.