Wear This Stigma

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epileptic – autoportrait, sepia print

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.

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About Sadi Ranson-Polizzotti

  • Sadi, what doesnt kill us makes us stronger.

    You are an inspiration to us all.

  • Sadi-
    Blowing me right away. Truly. And ditto on the inspiring thing. To say, “thanks for sharing” almost sounds trite, but Sadi – thanks for sharing

  • i’ll second that.

    amazing stuff.

  • I’m glad you’ve made peace with the fact that you must manage your life as it is and are not fighting it. We can only work with the material we are given. Some of us are more talented in crafting from scraps than others.

    One misconception that I’d like to correct, though, is that of the “one air bubble can kill you”. It takes much more than that. The reason nurses remove as much as as possible from the line is to reduce the likelihood of occluding the line.

    Generally speaking, unless you have a heart defect, the amount of air necessary to kill a normal person varies a great deal depending on position, chance, rapidity of injection, etc. Central lines are more sensitive to air in the line than peripheral IVs because a central line because it bypasses the lungs and leads directly to the heart. However, even then, a small bubble or two shouldn’t be a problem. Most air bubbles are easily absorbed in the blood stream and never cause a problem.

    Again, this is one of those times when my experience and knowledge can come in handy.

  • Great post, Sadi. I’m wishing you well! 🙂

  • wow! i love waking up and finding letters and missives from fellow bloggers and readers and really, those i would count among my friends. It means so much to know you care; that’s really all it takes is for one or several people to stand up to take away all of the hurt that others have caused with their ignorant and nasty comments. I’ll never forget, i was having a dinner party at my house and a girl who came wiht a friend and who knew i was epileptic, began to telll a joke about an “epileptic giving a blowjob” (her word, not mine). She finished her ‘joke’ (you can imagine.,..) and the whole room fell silent and all eyes were on me.

    I stood up calmly and asked her to “please get the fuck out of my house.” which she did in a hurry. i never spoke to her again and only saw her once at the funeral of the friend who had brought her along. Sad to say, she hadn’t changed at all and was the same nasty person she always was. I figured she is her own worst punishment,and i left it at that. But i will never forget that dinner party because it was the first time i really stood up for myself. I was calm but in an animal about to take down a gazelle kind of way : swift, precise and definate.

    Joanie thanks for the airbubble info. WE spent forever trying to get those little bubbles out of the iV, tapping away until they were gone. I have a hear murmur so not sure if that has anything to do with it,but we had heard from one of the (visiting) nurses to tap them out so we were quite religious about the whole thing. How funny to look back on it now and think of all we had to worry about, that was the least of it. The worst, and the worse still, is the cancer itself which is still not in remission and keeps rearing its ugly head but it will go away. If i could go two years with no surgery and no seizures, I’d be a happy girl…. so far, no go, but the future looks bright to me… or perhpas it looks brigher because i’ve stopp;ed trying to fight things I can’t control….

    the best advice i could give anyone: quit trying to control what is beyond your reach. Life is so much easier when you do that….

    sorry for long response; i’m just really touched by your comments, all of you…

    keep on swinging (Cary Grant, The Philadelphia Story),


  • WOW! What a story! Not sure how this will make others feel, but one of the big things that come to my mind is I have no business complaining about anything in my life when there are people like you that have such a harder row to hoe!

    Sadi – when you have these seizures and lose your memory…how long before it typically comes back to you…and does it all come back?

    I ask because I have a friend who had an anuerism and lost some memory…some of it, he never got back…

    And thanks for sharing…really.

  • Shark

    Sadi, you are the shaman of Blogcritics village. You cross over, come back to us, and describe it.

    We value you for that.

    As usual, I’m sending good vibes your way.


    re: Andy Marsh: “…I have no business complaining about anything in my life…”

    My wife is an Oncology R.N. — and every day, she reminds me that we really don’t have any problems.

    Good lesson to learn.

    And as Sadi rightly points out, for all of one’s pain/ills/misfortunes — there’s always someone much worse off.


    “Be Here Now.” — baba ram dass

  • Hi Andy: it took a few days before i really had a sense of who i was and who my husband was. I accepted him as a nice guy who came to visit and as someone i must have know, but as for the rest of it – like real stuff, it has taken since April and i still blank on things like spelling, for instance “sight” will become “site” “Chai Tea’ became “thai chi” (one of the better ones) so here are lots of word confusions tht i never made before. I always won spelling bees and now i can’t spell. also, bs have become ps which can also become qs or ds. The line on those letters is reversed if you get my meaning or flipped around. I also wear glasses all the time now because i somehow damaged the occipatal lobe which enabled me to see properly. They don’t really know why this happened, but alas, i have to wear glasses (i can’t wear contacts for other reasons, so i feel like freakin Selma in Scooby Doo which blows since i wanted to be the sexy one – ugh) But anyway, there are always people worse off. I look around the oncology ward when i am there and trust me, i’m not by far the worst case. Not by a mile and it’s important to remember that.

    shark – oh, how i adore the… I would travel down the Witness Tree any time for BC, thee. AS ever, many thanks and for you i write the following:

      First they glue the wires to your head

      a tangled sea of greens and reds,

      the metal probes near your nose, mouth,

      cheek, each a monitor of some

      electric hiccup. It grips you hard

      by the root, you bite your tongue

      until the blood runs and the bell

      is rung at the placid nurses station.

      They charge in with some brief,

      yellow pill, all promise and relief

      a sticky chemical spill, the pricked

      veins that do not bleed the same

      but sickly sweet with the smell

      of Dilauid and death. You lay

      rigid and seizing, wired for sound,

      an ancient mystic priestess

      all elbows and knees, you kick

      the air, suck great breaths

      despair, despair! Wait for

      the witch doctor, which doctor, the one

      who’ll throw the switch and you’re off

      down the hole, chasing a white rabbit.

      Catch him. He is your witness.

  • Thanks so much for a powerful account that articulates for me some similar issues. I have a neurological problem that sends random jolts of sharp pain through my head, and I’ve needed to change my life and juggle several medications–I know how it is to have friends misunderstand the situation about my “little headaches” and my apparently rampant drug use. Still, it’s nothing compared to what you go through, and again, thanks for the inspiration and the advice to “quit trying to control what is beyond your reach.”

  • It would seem to me that if I woke up and didn’t know who I was…I’d be scared shitless!

    The way you describe the letter thing, it almost sounds like dyslexia. Your strength in all this should be a message to everyone!

    I’ll also say that even though you may not have all of your memory back…you still write better than most people I know!


  • HI Gordon – you pain sounds pretty serious to me and i hope you’ve been given some real mediction to make the pain less…. My own pain (cancer-referred) is well under control with medication but my own family will say things like, “Oh, you ‘do’ too many pills” as if were somehow doing something illicit and not monitored every month by the pain clinic and not seen by truly the best doctors for this in the world at Dana Farber. Yet the insinuation is that it is always your fault – either the pain, the cancer, or the drugs, somehow, it all rains down on you. The reason for this is that people want to feel that it is not arbitrary; that it won’t happen to them becaue htey don’t do “x, y and z” that you do, even if you very clearly do not do those things.

    All that said, it’s no excuse and pardon me, but fuck ’em. I’ve had the worse things said to me by those who “love” me and now, i just don’t take their phone calls. That’s my solution. Whatever works for you is what you should do. For me, i’m content letting the phone ring and ring because in the final account, i have bigger fish to fry just now.

    keep strong – you sound it.


  • hah! Andy

    trust me when i tell you that the amount i used to write and the way i used to write has changed, from what i can tell and what the neurlogical tests have revealed.

    My husand disagrees with the writing part. With the memory part he agrees; i mean, he lives with me. There are times when i can’t remember just stupid things (like the Johnny Cash thing) or the name of an actor, and while this occasionaly happens to everyone, it happens to me daily. I also put the cereal in the fridge aned the milk in the cabinet and things like that. A few weeks ago we found my car-keys in the refrigerator. These are not a big deal, but still… not normal either.

    The b d p q thing is very frustrating for a writer as is the confusion of same-sounding words not to mention embarassing. To mix up “sight” and “site” when you do what i do for a living is dead wrong. Likewise with “its and it’s” which i clearly know the difference between them, for some reason i confuse them w/out even knowing it… a big frustration, but nothing earth shattering.

    The only time my health has been a real issue and i’ve had seizures in truly bad situations were places like air port security, immigration and naturalization (INS) Department of Homeland Security, and all because i was nervous (when they asked why i wanted to say duh! you have fucking guns on your hips and assault rifles ready to go…. wouldn’t you be nervous and isn’t that the point. And while many people judged me for “not being able to deal with it” they also can say that easy because they don’t have the physical threat of having or having had a Grand Mal – you know, convulsing and pissing yourself.

    So, that kind of judgment is like an annoying gnat that i want to squash but other than that, i blow it off. Walk a mile…. right… the expression exists with good cause.

    Anyway – thanks again, and take good care of yourself.

    rock on.


  • Baronius

    The frustration comes from not being able to trust your brain. You know the song on the radio, where the keys belong, and how to spell. It’s just that your brain doesn’t. It’s easier to distrust a freckle or know that your left arm doesn’t work right anymore – although it’s awful to think of any part of your body as the enemy. But the brain, when it becomes “the brain”, not your brain anymore. It’s a barrier between you and your body. It’s just so tiring. Sadi, you’re doing amazingly well.

  • Hi Baronius – it’s hard to, as you say, not always be able to trust that your brain will cooperate and not leave you seizing on some subway platform or wherever and when and if you wake up, whether or not you’ll be the same you as the “you” that went down. It’s all so confusing but one doesn’t want a big pity party – hardly , just to explain and help so that people stop assuming drugs and such….

    as for me, i manage, though it often doesn’t feel like it and i DO get tired, you’re right. i just get tired – it’s that simple. multiple reasons: medication, worry, stress, seizures, depression, all of it. it makes it hard to write as much as i would like at times, so this much is very difficult . i’m used to being a very productive person —- thanks for answering: in the other piece, i wasn’t singling out the Catholic church (not on purpose anyway), just any church that does this. I hadn’t realized that other churches could perform excorcisms sincei thought they had to be sanctioned by the Vatican or by a Bishop. My understanding, and i could be wrong, is that exorcisms could only be performeed by the Catholic church. I don’t blame the church as much as i have a problem with other factions or groups that take it upon themselves to do this stuff…

    Emily Rose may have been thirty years ago, but this is happening today and that scares me the most. Such people would do this to ME an dthat’s a terrifying thought….

    Thanks for reading both – sorry don’t have time to write more…

    cheers, and be well,


  • It still (somewhat) amazes me that in all of our so-called advanced technological society, people are still so prejudiced and narrow-minded about other people’s differences. We haven’t advanced very far at all with the way we interact with others.

    I truly admire how you continue — with such a positive outlook — with all that you endure with your health problems.

    I have other health issues, not epilepsy, but do have to take a medication used in the treatment of epilepsy in a rather high dosage on a daily basis as a preventative medication for the cluster migraines I have suffered from since the age of fourteen. On top of this, I take three medications relating to my heart, and two other medications relating to another condition.

    Like you, I wish I could just quit taking them all, but … that would be impossible to do (and survive).

    Your candid manner in sharing snapshots of your personal life are not only brave, but are also very inspirational to many. You are not afraid to show your vulnerability and, at the same time, show your strength of spirit in how you continue to persevere through adversity.

  • Hi Susan:

    It sounds like you have a great deal on your plate as well and while you gave some specifics, you need not give more for me to understand that it is often hard. I don’t know if you face any social stigma; i suppose part of it is that i can either choose to tell or not choose to reveal that i am epileptic. At work, for my own safety, i need to tell someone, even if it’s only one person so that if something happens, someone there knows what is going on and to call 911.

    Other than that, i don’t normally tell but i’ve outed myself on Blogcritics several times in the name of what i hope is helping people be more openminded and other epileptics finding these articles on Google and feeling less alone which does happpen. So, there is a lot of good there…

    You’re right about being vulnerable and strong at the same time. But perhaps in order to be strong, you have to be vulnerable to some degree to truly show your strength and who you are means opening up a little bit…. does that make sense?

    Well — regardless, thanks for reading, and all the very very best with your own stuff. I know how taxing it is (esp Migraines, i get them as well but they’re controlled w/ strong medicine now), but hang in there….