By Sadi Ranson-Polizzotti
I am in a bed with bars on either side that are protected with sea-foam green padding (the green that hospitals seem so very fond of. If it ever had a calming effect, it no longer does because one associates it with some emergency; an obvious conclusion. You’d think they would have changed the color by now, but no. It remains hospital green.)
If the bars had you thinking this visit was a mental health stay you couldn’t be more wrong. The bars exist to protect me from falling to the hard ground and injuring myself should I have an epileptic seizure. I am epileptic, and this hospital visit is a stay to monitor my epilepsy – a neurological condition that affects the brain and causes myriad varieties of seizures from blank staring spells, those petit mals, to the more difficult to explain complex partial seizures that involve a mental loss of consciousness, sometimes an outright faint, and have aphasia, strange motions of the limbs sometimes, an inability to communicate at all. A complex-partial seizure can often be confused with someone who is on drugs or alcohol which means that unfortunately, a few times I have tried to get help, only semi-conscious, I have been written off as someone on drugs until I went into true convulsions. Sometimes the seizures come with warning, sometimes without.
With most seizures, you tend not to remember what has happened, only that time has passed and that you have with no recollection of events; you lose time. Then there are, of course, the grand mals – those big, convulsive seizures that on the outside are so dramatic and that most people associate with epilepsy. It is the complex partial seizures, which are just as serious, that are over-looked or all-too often mistaken for drugs or alcohol, thus the epileptic in public often goes without help until the seizure progresses.
As for me, I have all kinds of seizures but most often, I am in the middle with complex partial seizures in which I am not home, not really conscious, and for which I have total amnesia. I have gone into complex-partial status, which means that I have had continuous seizures with no break in between. The last time this happened, I had seizures from about ten in the morning until about seven at night and awoke with total amnesia – not even knowing my own name.
I tell you this not for pity or empathy because I wish neither. My goal here is to tell you why I was hospitalized – so they could see where the seizures are coming from since they have changed . This “epilepsy monitoring” is supposed to be done on a regular basis to check and see if the seizures have caused any lasting damage and more, to see if there is new seizure activity in a different part of the brain. So it was then that for over a week just recently that I found myself in one of Boston’s most prestigous hospitals (which also happens to be a teaching hospital) and I was hooked up with electrodes all over my head, monitors everywhere, a constant video of me in my bed and a microphone in the room all of which would be evaluated. While one understands the necessity, it is also important to note that because of this necessity, one loses, sadly, any privacy (which would not be so awful), but worse, any self-identity. You are, in short, to those who do not know otherwise, treated like a ‘mouthing idiot.’
If you want to know how to create a power relationship, strip an accomplished person of their clothes, stick them in a johny (which I refused to wear, choosing instead my husband’s oversized oxfords), confine them to a bed with bars and padded sides, stick wires about the head like some electrical grid that could power a small third-world country, take away their medication and see what happens. It is a de-humanizing experience – I am not longer “me”, but some “perception” of me that is totally out of context. These doctors, and especially residents – the “I’m too clever by half” routine, have no understanding of my professional standing etc. I finally simply told them to just Google my name if they wanted some context and my husband printed out the Wikipedia page about me as a hand-out. It may have been a bit like blowing a raspberry, but one must fight back or be relegated to a world in which you really are treated as a lessor person.
Day one, I was admitted and the doctors slowly began to take away my medication to see what if any of them, were causing seizures. The running and popular theory was that it must be (of course) my Ritalin that was causing the seizures. It could not possibly be any other drug. Ask yourself why this particular drug was targeted and the answer is easy: doctors are not comfortable with controlled substances. If you are on a drug like Ritalin, whether the doctor openly acknowledges this even to him or herself, the assumption is that you are in some way, a junkie. Perhaps you are abusing the drug. Perhaps you cannot function without it because you “don’t really need it.” Whether the intent is there or not, I can say generously that on some subconscious level, doctors, and especially young residents, are inexperienced and make unfair assumptions – perhaps they are taught this at Harvard Medical and if so, that is a problem right there.
Ritalin, like the opiates I also am on (all prescribed legimiately by the pain clinic at the same hospital and for pain from a major cancer surgery and blinding head-pain that surpasses any migraine – a diffferent glass altogether), make doctors uncomfortable. They make them uncomfortable because they have drugs like Ritalin and opiates have a stigma attached, unlike say, Prozac or Cialis or Viagra. It is the fact that, after my doctor and I tried about 38 different medictaions for post-cancer pain and major head pain we finally found two that work, but the assumption, made very clear during this recent stay by certain residents and one full doctor is that I must not really need the medication. It must be that I like it. That I get off on it.
During this stay, one doctor (to whom I showed the bottles of my medication, absurdly proving that yes, I am on these drugs and they are legimiately prescribed) even said to me, and I quote verbatim, “If I were on that high of a dose of those drugs I would be unconscious.” Well, thank God he is not on these drugs, but to even note how HE would feel is totally irrelevant to my situation. He’s also not on anti-convulsants and yet that was not an issue. Take the drugs for recreational purposes and sure, they’ll knock you sideways and silly and dopey. Take the drugs for pain and they simply bring you to an even keel and able to function without pain.
Pain works like this: if you are in pain, the drugs, the opiates, will only control the pain and will not make you high because they are too busy working on the pain. If you are not in pain, the drugs may make you high or loopy but since I have never taken the drugs without pain, I base this information solely on my reading and experience of others. Whether or not the good doctor would be “out cold” is irrelevant and more, it was a judgement passed on me and my use of such medication. What he did not know is that I had, of my own free will, stopped taking all of the medication for about six or more months when I could have easily gotten a script. I had no “Trainspotting” moments. I did not shiver, throw-up, etc – I did not go through any withdrawal, regardless of whether I “should” have or not, I simply did not. I cannot say more than this. The facts are the facts.
More, I do not ever take the full-dose of my pain medications –even though I am technically supposed to take it as prescribed, I am a noncompliant patient in that I only take it when things get really bad. Note that this is against my doctor’s orders who strongy encourages me to take the full dose – and note too that this doctor is no “quack” but is one of the most senior pain specialists at the very same hospital where I was admitted and that has the best Pain Management Center in the country.
I have learned to live with a certain amount of pain. What the doctor doesn’t know is that every month I have at least twenty pills or more left over from the last month. That I go to the pain clinic to keep my prescription current precisely because of doctors like him who pass a judgement and I fear that the drugs may be taken away from me and that I will again be in pain that, until I was treated with opiates – pain so intense that it sent me to the hospital about three times a week to be cured with a shot of Demerol, and even there, in the ER, I was often treated like a person trying to “score.”
Even then though, the emergency room doctors treated me as if I were practicing “drug seeking behavior.” It was never a thought that perhaps, just perhaps, I am a woman with real and intense pain and that I have dealt with it remarkably well – but that I am tired of living a life in pain when there is, as my pain doctor said, there is “no good reason” to live in pain, and frankly, she is right. That I had a good part of my shin removed due to malignant melanoma and my leg has never been the same since, yes, this causes pain. That my head pain, wherever it comes from, is like that of meningitis (which I also had in 1996). No. None of the obvious facts could be true because these drugs carry a stigma and I am immediately and without cause, lumped in with the unfortunates who practice “drug-seeking” behavior. To be frank, I don’t like those people either because they only make it harder for those of us with legitimate use.
I hate those people who are drug-seekers because they make my life harder – but what I hate more are doctors who don’t know me and who make an assumption without knowing the first thing about me. And this is what happened to me during my last hospital stay.
The first drug to be taken away was Ritalin (my neurologist was vehement in his belief that it was surely the Ritalin causing these new seizures; it simply did not occur that perhaps it was the newer drug that was causing the seizures.).
Day one I am taken off of my Ritalin completely. Not titrated down – which I imagine would be more responsible, not to mention safer– but taken away full-stop. Did I mention that besides my epilepsy, I had a sleep study (at the request of the neurolgy department that also treates my epilepsy: oh irony!). The sleep-study showed that I had no ability to stay awake and would fall asleep if allowed to sit-down at all. This, they said, either was narcolepsy or very close to it, which means that I would fall asleep in the middle of a conversation for a few minutes, then wake up, repeat, etc. Hard to live any kind of “normal” life if you constantly fall asleep.
Before I was treated, I literally slept about seventeen hours a day and my weight plummeted to a size two (I was never awake long enough to eat). This made not only my life a living hell, but also my husband’s. How can you have a relationship with someone who, for all intents and purposes, is “absent.”?
So day one without my Ritalin I remember very little. I remember a team of neurologists, likely residents, coming into my room to evaluate me. I remember one woman with an accent and an unfriendly face and tone of voice saying to me, in my half-sleep twilight, “How do you know you have narcoplepsy,” she said snipply. “Vat makes you think you have this?” It was aggressive, challenging, but I don’t remember much after her question because I fell asleep before she could finish her interrogation.
Then there was, the same day, a neuropsychologist who tried to test me but to no avail because again, I kept falling asleep and she finally gave up. I should point out that I remember of these incidents only snapshots. I do not recall my husband visiting me that night, or the phone calls that friends informed me they made. I remember nothing except that one woman’s nasty and judgemental statement, then falling asleep. Perhaps she believd me then?
Day two I was put back on the Ritalin because it was apparent to all that I could not work with the team of doctors – respond to neurotesting etc – for the simple fact that I could not stay awake. So, for the doctors who doubted the sleep disorder (one or more actually said to me pointedly, “How do you know you have a sleep disorder?”) here was proof positive. The fact that it was this very department – neurology – that had set up the sleep study in the first place and that the results were clear and that during the sleep study I was taken off of all of my medication, thus, it could not be medication induced fatigue. No. It was quite simply that I have narcolepsy, or something very close to it, and during this stay when the questions were asked of me, I did, without intent, simply fall asleep again before I could answer. Perhaps this is how we know I have narcolepsy? Point made.
I had said multiple times that I did not feel it was a good idea to take me off of my Ritalin, the fact remains that I am the patient and the doctor is the doctor. Never mind that s/he does not have to live my life – s/he must know best. And besides, what does s/he truly care? They see me once every six months – I am the one who would have to try to live a “normal” life in a state of almost constant sleep, making it impossible to do what I do for a living…frankly, one cannot have any meaningful life is you spend most of it asleep or in a state of semi-somnolence.
Maybe they thought that through sheer force of will I could stay awake. Or more to the point, the implication quite clearly was that I was a flim-flam artist who had duped a series of doctors into prescribing Ritalin because I wanted to get off. Of course – why didn’t I think of that! What a good actress I must be to have fooled some of the best neurologists in the country and more, to fake a sleep-study to such an extent that I even controlled the wavy lines of the EEG. If all of that were true, I really did miss my calling – I ought be an actress, not a writer.
Nurses and younger residents are another matter. Of course, the human mind is funny and perhaps it is to some extent to literally “look down” on a patient in a hospital bed. The result of the patient being rendered helpless in the padded bed, vulnerable in her johnny, off-center because all medicine has been withheld creates an imbalance of power. The patient (read: not person) is then infantilized. I note too that doctors and nurses alike speak to me as if I am deaf or stupid or both. Words are spoken slowly and loudly as if I could not comprehend or keep up with the normal pace of conversation which is also condesending.
How many nurses and residents condescended to me by speaking to me loudly and slowly as if I could not follow any real conversation. I wondered, would they treat me this way at a dinner party? More, what if – and god help us – on off-chance I should be perhaps smarter or more accomplished than they? Do you immediately reject this idea because a doctor went to medical school and as a writer studied I studied graudate and undergraduate. Is it that I chose not to be a doctor that by default, makes me inferior? A writer must be no match for a doctor, no matter how good or accomplished because writing must be “easy” or perhaps not a “real” profession. Bullshit. That I have worked for the best magazines in this country, been widely published, etc etc is not a known fact among my doctors, nor do they seek to find out because my professional accomplishments (I would guess they assume I have none) must be “irrelevant” to the to my assessment and treatment when, in a real view, nothing could be further from the truth. In fact, the very fact that I must sit here now and “defend” my position is absurd.
Interestingly, epilepsy monitoring includes psychological testing which means that during your stay – while you are off of all epileptic medication – you will see at least one psychiatrist. It is, I was told, simply part of the ‘treatment.’ Why? Here is a therapist who meets me for one hour of my life and who is there to make some ‘”assessment.” During this hour, she will assess me and after, write a report about who I am and my present state of mind.
Does it strike anyone else as out of context? How is anyone going to assess my entire life in one hour? More, what if I am upset by real-world events (the death of a friend, other stressors) and that being in the hospital due to many seizures – which took me there in the first place – could this be part of my mental state? What if I have a private psychiatrist and make that known – I have an established relationship with that person and yet I must play nice with the psychiatrist and god help you or me if I appear upset because the first question will be, of course, “Are you feeling suicidal at the moment?” Any sign of upset may be a sign that you are “unstable” (doctors, of course, never get upset – they must be immune to life’s hardships and curveballs. Perhaps as writers, as I am doing now, it is our turn, my turn, to assess them. It seems to this writer that many of the psychiatrists in particular had a “superior” attitude and that the more frustrated one becomes, the more upset one is by their probing questions, then this is used as yet more “evidence” against you. To state it plainly, the more you are treated like you are crazy, the crazier you become, only proving their point. It’s a kind of set-up. Book me the Sylvia-Plath Suite at Mcclean.)
I wonder, what was the diag-nonsense?
I can understand the neuropsych (different from pure psychiatric testing) to see if you have had any brain damage or deterioration from the seizures. And I liked the neuropsychiatrist; she looked like she could be a member of my family with her red-hair, green eyes and pale skin. She was also, like me, foreign. She did not treat me like a mouthing idiot. She simply did her job, which although parts of it may seem degrading, they are a true measure of the brain and I reminded myself of this.
So I copied the shapes she made with building blocks, I drew a strange and curious picture from memory, I repeated stories she told me, I remembered words, I was tested for left- and right-handedness. I was given a 300 question form to answer (which was essentially about five to ten questions all worded differently, as if I wouldn’t notice this glaring fact…).
One of the questions really struck me; “Have you ever been arrested.” An interesting question for the assumption would be if you said Yes, that if you had been arrested it must have been for something “bad.” Perhaps a felony – rape, murder, armed robbery, theft, etc etc.
But what if you had been arrested in the cause of something good. It seemed unthinkable given the wording of the test. To carry the point further, let’s say you were protesting vivisection or animal testing; what if you were protesting nuclear plants and nuclear energy; what if you protested a war that you felt was corrupt (aren’t all wars about something other than what we say they are?).
I thought of myself in my twenties as an animal rights activist. I vividly remember that General Motors was crash-testing live pigs in their cars (why?) and how this was cruel. I remembered the video made by General Motors in which a live, unsedated pig, is strapped down while someone took a blowtorch to his skin to see “what would happen.” All of this, of course, done to demonstrate, supposedly, what would happen to people should they be in a car crash. Not that pigs are people, mind you. Never mind that crash-testing a sentient being is cruel at best, it was what General Motors was doing at the time.
I remember that we drove a General Motors car to a prominent dealership and I remember standing on top of that car, dressed in a rabbit suit (to protest the Draize eye test) and weilding an ax and totally destroying the car and how this brought a lot of attention to our cause – so much so that G.M. stopped their crash-testing. One can make a difference in this world, even if reduced to such radical tactics. Then I remembered the police hauling me away. Was this important, I wondered? There was no space on the form to write in the details of my run-in. It was a simple Yes or No quiz. So again, what if I had been arrested, hauled off because I was protesting cruelty? What if I had been protesting apartheid as I did in college? Does that mean that I should have sat idly by why, because of the color of their skin, certain people lacked basic rights and freedoms. What about Nelson Mandela? Would the neuropsych see him as corrupt as well? Let me remind you Mandela said in his inagural speech: “It is our light, not our darkness that frightens us.”
It was a misleading question, as were many others – answer them honestly and to the narrow mind you look like an unscrupulous criminal.
In non-western culture and among the Inuit and Native American and other cultures, the epileptic is and was revered as one who went into altered states and could commune with the gods and goddesses. The shaman would travel, in this altered state, down the witness tree and speak to the gods and ask (sometimes) for much needed things on behalf of the whole village. The shaman would placate the gods and it was only the shaman – very often epileptic – who had this power and thus, was a sort of holy person in the village.
Compare that with western culture that has in the past and still to some extent, views the epileptic as the ‘spastic’ or the idiot. Granted, this was more so in older times and the Victorian era when epileptics were confined to mental institutions (again, epilepsy is not a mental disorder but a neurological one, which only serves to highlight the ignorance of those who fail to see this.) I have a booklet that is a sanitarium for epileptics that details the various treatments and ‘causes’ of epilepsy. The pamphlet is from the late 1800s. According to the pamphlet, the major cause of epilepsy is masturbation. Cures ranged from hydrotherapy for men and for women, and this is where we really see the perversity of the ‘doctors’ – for women, the treatment involved wearing a chastity belt (to prevent the underlying cause of masturbation), but the ‘cure’ involved regular visits to the ‘doctor’ who would stimulate the female patient to orgasm. Thank you Dr. Freud. Thank god I am a Jungian – which I find much more sensible and logical.
Of course, I don’t need to point out the perversity of this ‘treatment.’ The women who rebelled against the treatment were ‘histrionic,’ suffering from fits of ‘hysteria.’ Or perhaps, like me, and I like to think most reasonable people would agree, the women who rebelled and saw a treatment that was highly perverse, fetishistic, as well as abusive and simply hiding under the guise of ‘treatment’ when it really comes down what is essentially, sexual assault.
Do I need to tell you that none of this had anything to do with epilepsy? Must I really point out in this day and age that epilepsy is not caused (and never was) by masturbation but by head injury, brain abnormalities, or present from birth or sometimes a complete mystery. We may have moved away from the fetishistic doctors and their so-called ‘cures,’ but the stigma of epilepsy persists not only among the general public, but in the medical profession.
No doctor, other than the one doctor who has known me for many years, asked me what I do for a living. Nor did they ask, after finding out that I am a writer, which books I have published, or where I teach, which publising houses or magazines I have worked for. Thank god for my attending physician who has known me for years and in a more proper context.
The psychiatrist who walked in with her perfectly coiffed her, her carefully lined eyes and powdered-nose, nicely knotted scarf and a skirt that was appropriate but still allowed for other (male) doctors to admire her womanliness – she no doubt took one look at me (no make-up, no clothes, all wires and tears) and made her judgments. I too could make judgements based soley on what she was wearing; that she was inappropriately using her sex in a hospital setting with male doctors, to what end I cannot say, but this much seemed apparently clear. Is this too not a sign of some insecurity?
But what if she saw me on any other day – if we passed on the street. What if she were in the audience when I lectured at the very school she attended? Would her assessment be the same? And more, why or who is she to assess me? She is just another doctor in a hospital with a degree. Should I assess her writing skills? Ah, I know, you say, “But she is not there to be assessed….” Yes, but I was not in the hospital for psychiatric testing – so why is she present? I covered this ground earlier so I will not repeat, but you get the point.
One hates to be like this – to keep a running tally of one’s accomplilshments yet it is almost forced in some effort to not only be an advocate for yourself, but to make sure that you do not lose your identity. It’s really not so different from the armed forces in which you are stripped bare of your identity then built back up with another self instead. I entered that hospital a successful writer if I had bought into the way I was treated, especially by the psychiatrist, I would have believed fully that I am a weak person, falling apart, depressive, manic, and maybe even falling apart. Thank god I have a strong sense of self and an inner-core of being.
In all, while I found most of the treatment helpful and am no longer having such bad seizures, it turned in the final account to be one of the newer “anti-convulsant” medications that was causing the seizures in the first place. We all know that doctors are encouraged to prescribe the newer drugs for myriad reasons and in the final account, the patient becomes a guinea pig. It was not the Ritalin, the opiates as all had suspected, but one of “their” drugs.
I have no more to say about this subject, only that I remain, as a poet and a writer and yes, an epileptic, more inline with the Inuit, non-western view, that I am a kind of shaman – that through my writing and more, my poetry, I am able to express things for which others cannot find the words. That is the true measure of who I am, that is what is real. Why this doesn’t count in western culture remains a mystery to me – and no doubt, it would also be a mystery to Van Gogh, Edgar Allen Poe, Lewis Carroll, Lord Byron, Hippocrates (ah, the father of all modern medicine), Socrates, and countless other epileptics… but what do I know. So I end by saying, “Hi, my name is Sadi and I am epileptic.”
Thanks for listening,