I have to keep moving forward, regardless of what any doctor may say or any health official or anyone in the field. It seems I get yet more and more bad news and yet I am the furthest thing from a hypochondriac (in fact, I’m not even clear on how to spell the bloody word) and yet, I seem to bring with me a plague of illness ever since I was a young child.
For the most part, I have made my peace with epilepsy. I won’t bother it if it won’t bother me, though it certainly made its presence known in April when it caused seven or so hours of back-to-back grand mal seizures, which I may have written about here (or perhaps not, I can’t recall). All I recall of that day is the morning when I approached my husband to tell him that a “big tidal wave was coming.”
He of course reassured me that this was not so, yet part of me must have been prescient, knowing that some impending disaster was about to happen, because not a half an hour later, I made my way about half-way across the living room’s wooden floor before thinking “gravity is soooo heavy” and then falling.
I remember the hard slap of it. How I could not even put out my hands, and then everything went black. The rest of the day is in snapshots only, when I would regain consciousness for a moment or two, then fall back into the restless and blue slumber of the brain as it hisses and crackles.
For example, I recall a fireman’s red suspender and recall thinking “safe” because I knew that help had arrived. I remember being wheeled into the E.R. screaming “No, no, no,” like a little kid who had lost her way and was terrified, which essentially I was.
As to the rest of that day, I recall nothing except waking up for a while in a room where they were gluing electrodes to my head (for the second time apparently) and were in the process of admitting me to the hospital for a proper stay. You don’t have status epilepticus (seizures followed by seizures) and then walk out and go home and say, “What a bitch of a day.” It’s never so simple.
What I remember is that I did not remember. I did not remember my own name. I did not recognize my husband. I did not know anything about the modern age (president, my address, where I was – the usual stuff they ask). In fact, the only thing I remembered was the year of my birth, and so because of this, whenever the doctor asked me a question I told them the year of my birth. The first time I said it got such a hurrah reaction that I must have determined that this was the “right” answer for each question (obviously I was wrong).
To be fair, I did say of my husband that he “looked like a nice guy” and since I couldn’t go into the bathroom alone and wouldn’t let a nurse come, I chose him to which the nurse responded, “But you don’t know him.” “Yes,” I told her, “but he seems nice” and then the door closed and I made him turn around while I peed. Somewhere in the coiled labyrinths of my brain I must have remembered some intimacy with this complete stranger, otherwise, why let him in?
It took a while for my memory to come back and it came back slowly. I remember seeing Johnny Cash on television in the hospital and knowing that I knew him but not his name.
But that’s epilepsy. That’s just something I live with and you manage because you don’t have a choice. Cancer was a different thing entirely and I don’t feel like going down that long and boring and painful road because if a freckle can turn into something that could kill me (melanoma) then I can’t think about this because I have literally thousands of freckles that could, at any time, turn “bad” and since I cannot control this, I cannot think about this anymore. It has come and come back and gone and then come back again and for as much as I want to kick and shout about it, it is true that it could be worse and IS worse for so many people – so who the hell am I to complain? Pain is a relative consideration, and my pain, which was really painful, could always get worse. Just when you think things can’t get worse, they do.
Now, I find that one of the medications I have to take has caused my thyroid function to fly off the charts and that yet a new doctor is added to the mix. It’s not that I mind or that I feel sorry for myself; it’s that it is another detail of my life to manage, and frankly, there are enough details to manage as it is without this. I barely keep control of all of the medications now (they live in a large Tupperware box, absurdly large) and want more than anything to just stop taking them, if I could, but I can’t, and that is my reality.
I’m not sure where I am going with this other than to say that if you do have your health then value that. Then get outdoors in the sun (because I can’t) and soak it up and yes, be careful if you are fair as I am but otherwise, just live your life. These days, I feel like the youngest shut-in ever. I remember having to learn how to change my own IV and administer the medication through the IV and snap and tap the oxygen out of the line because one oxygen bubble could kill you. Thank god those days are over and I am free to walk – to walk – no wheelchair, no IV, nothing; rien.
So it is then that I am about to reluctantly ring another doctor and introduce him or her into my life. That I must do this because it is what is required for me to stay on the other medication that prevents me from having those brain storms all blue-flash lightning and cool-electric gas; that prevent me from lighting up like an electric shaman dressed in a coat of mirrors as I travel down the Witness Tree. This is what we must prevent, even though in some cultures it is nurtured and valued. That the village shaman, often or most often epileptic, is revered and not disdained or misunderstood or, as used to be, confined to a mental institution because some idiot muddled up epilepsy with a mental disorder when really, it’s a neurological disorder but no matter – anyone different just shove ’em all in the same hole because it’s there and it’s deep enough.
Still, despite social stigma, despite the risk of status, despite my absurdly high thyroid function, I must move forward and keep reminding myself that this is not as bad as it gets. That I’ve seen worse in friends who have died from far worse conditions, and that for the most part, I am functioning and fortunate. I can do so much that they could not.
Not too long ago, and I’ll end here because it only bears out my point, I was having an IM chat with a so-called friend in Paris when I began to have absence or petit mal seizures. I did not collapse or convulse, but these are seizures. Letters refused to line up and make sense; I tried as hard as I could to type EPILEPSY, but when I did, it came out like gobbledy gook. Not at all what I expected. He typed one word with a row of question marks. It was: “Drugs??????????”
This is how ignorant so many people are and this from someone who called himself a friend (obviously not and not someone I have any interaction with anymore – I see no point because I see no future with someone that presumptuous). That anyone who would assume that of me simply doesn’t know me. It’s not the first time I’ve heard it, but I admit it hurt more because I had overvalued this person. I remember being in Provincetown years ago, and while there, I had a grand mal seizure in a restaurant. All I remember is saying, “We have to go…” and then trying to stand and again, fighting gravity that would win out any day.
The ambulance kindly drove us back to our little shack on the beach and wished us good night (I had refused hospital treatment since I then felt fine now that the convulsions had stopped). The next day, as we were leaving, the old woman who ran the place told my friends that “she shouldn’t do so many drugs and alcohol – that’s what happens!” practically wagging her finger at me as we drove away.
I’ll never forget that. It was the first time I realized I had a stigma attached to me. I was wearing my boyfriend’s striped oxford and a pair of heart-shaped sunglasses. I turned away and looked out the window of the Lincoln Town Car and knew that things would never be the same again.