I have been withdrawing from something or other off and on for years. I started taking Prozac, at the suggestion of my therapist back in 1993. After a while, that seemed to wear out. I switched to Paxil. That worked for a while, and then I switched to Effexor, and mixed in with these I also took Wellbutrin (to help stop smoking) and Trazadone to help with sleep. The withdrawal from Prozac was perhaps mitigated by switching to Paxil, and the withdrawal from that, mitigated by starting Effexor. Not that I didn’t feel odd and sometimes terrible. I had achy muscles and odd nerve sensations. I felt water running down my leg. I would look but there would be no water. And at one point, I felt as if someone was trying to stuff a golf ball up my anus. I was afraid, feeling I perhaps had prostate cancer, not knowing that the pelvic floor has all sorts of muscles that can tighten up and twitch during a withdrawal. And this is not to mention the more subtle and diffuse symptoms of persistent fatigue, anxiety, and depression. Oh, and I need to add: terror and despair.
I had some idea, given these experiences, of what withdrawal might be like, and while they suggested withdrawals can be done, they also suggested that they could be just plain awful. Additionally, this time around, I was not withdrawing for some little, old anti-depressant, but from one of the benzodiazepines. This particular family of drugs has been around for some time. An earlier, popular version, was Valium. This you may have heard of, it having been featured in pulp fiction and films about depressed and repressed women in the 1950’s. I think it was probably the medication that the Rolling Stones sang about in “Mother’s Little Helper.” Another member of the family more lately in the news is Xanax, a drug young people today seem to be dying to get their hands on. I took that for a while, as prescribed, and found it worked too hard and too fast. It made me feel ragged. So instead I was prescribed Klonopin. That’s its brand name. Its “scientific” name is clonazepam, and it is considered, arguably, the worst of all benzodiazepines from which to withdraw.
I sure didn’t. When my therapist suggested I try Prozac, I went to my HMO psychiatrists, told them my symptoms and was diagnosed with dysthymia. Apparently this condition no longer exists having been replaced in the DSM-5 with “persistent depressive disorder,” which while not as technical sounding as dysthymia is a bit more descriptive. Yes, I was persistently depressed, and when I mentioned my panic or anxiety attacks, I was prescribed a benzodiazepine. “Here,” I was told, “these will help you feel better.” And I guess I did. Sure, there were side effects like dry mouth and some decrease in libido. But I figured there would have to be some trade-offs. And the first time I took Prozac–I was on and off it several times–I do remember feeling a new kind of energy that seemed to help me through my days.
At no time, did anybody in authority say, “Hey, get off those things. Get off that benzo especially because those are really nasty drugs, and withdrawal can be for some people pure hell.” At the same time, I have to say, lest it appear I am shifting blame, nobody ordered me to take those pills. Nobody forced them into my mouth. But I think I was short on information. Or, it could be I ignored the warning signs I did see because, as I said, it was a trade-off. But back in 1993 the web was not as “robust” as now. I looked, then, but did not find what I find now: web sites all over social media on the devastation wrecked by these drugs, national movements to get the sale of these drugs massively curtailed. Warnings everywhere: don’t do it! I would like to think had the warning signs been as egregious back then as they are now, I would have demurred and said, “No thanks, doc.”
But who knows. I read an article recently arguing that payday loan institutions should be outlawed in the state where I live. The article described the outrageous practices of these institutions, the exorbitant, usurious interest charged for loans, the bullying tactics used to get the money owed. The loss of homes, the destruction of families. And, yet, there were people, poor people, who argued for the utility of such loans. I don’t know what made me more angry: institutions , so-called businesses, that would prey on the weakness of people, or the people stupid enough, in the face of all they knew, who took out those loans. And then I thought” “Look who you are calling stupid.” When people are desperate, they will believe anything. They will believe that they can and will pay off that loan, or that this little pill, the product of modern medical science, will alleviate their misery.
I guess I was getting desperate. Things just were not falling into place as I would have liked. When I heard clear back in 1964 that Professors could get something called “tenure” and that this meant that they could not be fired for any reason, aside from outright criminal behavior or dereliction of duty, I think I knew what I wanted. Tenure. Toward that goal, I got a PhD and went on the job market for over ten years. The experts kept saying the market for PhD’s in lit. would pick up, but it didn’t. Humanities Departments everywhere were shrinking. Podunk U, in the middle of nowhere, could hire somebody from one of the best schools in the country. People like me from a 2nd rate Department were locked out completely. Working against me further was the need for Departments though out the country to hire women, because for years they had not done so. I understood that this inequity had to be addressed. The longer that I did not get a job, the more my credentials in effect wore out. By 1993, I was pretty much yesterday’s news, if I had ever been news at all. My dream of getting tenure and teaching at a small tree-lined liberal arts college where I might inspire young minds and become a much-loved, albeit somewhat curmudgeonly, Professor of Literature, was dead. In fact, I had given up applying for jobs in literature, and had started instead to look for jobs as a teacher of writing.
This was depressing. I was a victim of fate. All of this however did not keep me from trying as hard as I could to find a place where I might get on the tenure track. In the meantime, and in addition, I needed to make sure I kept getting rehired where I was teaching writing. For a number of years I had been on one year contracts, and then I was on three-year contracts. This meant that every three years I had to come up for a review, the academic equivalent of a bathing beauty contest, with about as much rhyme or reason as one of those. I was ranked in three categories: teaching, professional development, and program service. I was good at the teaching part, though even there you never knew. Sometimes students in their “evaluations” would write hideous things which some body somewhere in the bureaucracy might take seriously and put the kibosh on you. To increase my chances, and because I liked to think about what I was doing, I concentrated on professional development as a way to insure I got rehired. I wrote articles and got accepted to speak at conferences of the profession.
I went to a conference in Atlanta, Georgia. I was selected to speak for 20 minutes, along with three other people, on a literacy development project that I and colleagues had done with members of the California Conservation. I was perhaps ten minutes into the talk when I knew I could not go on. My shirt was stuck to my body with sweat. Sweat ran down my face. I could hear my own voice but it was not my voice. Some sort of hollow thing. I was in the throes of an anxiety attack. I was afraid it might get worse. In one panic attack, years before, my whole lower body had begun to shake and quiver. So I finished a paragraph, said “Thank you” and sat down with 10 minutes of my time left.
Honestly, those conventions are dreadful affairs. The room was hot and stuffy. I don’t think anybody noticed. At least nobody said anything about my abrupt and illogical conclusion. Or perhaps they refrained from politeness, or assumed I was drunk, hung over, or on drugs. I had been humbled, humiliated, and shamed by my own body. There’s nothing quite like it, to feel your own words turn to mush in your mouth, to look out on a room full of people who look like they are falling asleep, and to be overcome, for no reason, with terror. You don’t want it to ever happen again. So when a doctor offered me a benzo, guaranteed to reduce anxiety and the incidence of panic attacks, I said, “O.K.” in part at least because I felt that I would not be able to hold my job and possibly get a raise if I could not speak at conferences. Or get on an airplane.
Those were the circumstances, primarily related to my aspirations and my employment situation, that contributed to my decision to a) take an anti-depressant and b) go on a benzo. I consider those decisions, most especially “b,” to have been mistakes. I wish I had not made them. I wish instead I had decided to devote my life to meditation or perhaps become, as I have known others to do in stressful situations, a Buddhist. But I did not perhaps because neither course would have fit with my employment situation at least as I understood and practiced it. It all goes back to money, I guess, and how to make it. In any case, as I have indicated, retirement came along and I decided in those altered circumstances to get off the benzo I had been on for 23 years.
I was, at the time of that decision in 2013, by my calculations 67 years old. It is at the time of this writing 2018. I am 72 years old. I now consider my decision to get off those drugs a mistake almost equal in magnitude to the mistake of my having gotten on them in the first place. It has been 5 years and I am still in the throes of a debilitating and agonizing withdrawal. I had no idea at all what I was getting into when I started the drug and no idea what I was getting into when I decided to stop. Many people who have taken benzos don’t know. Certainly, it seems, though concrete evidence is scarce, that many people who take benzos for an extended period recover very quickly and are able to resume their normal activities and to feel their normal feelings. This is not the case, however, for a fairly substantial, though no one knows how substantial, group of people who suffer for two, three, four, five and even more years. And among those who have suffered this long, the question naturally arises, “Has my brain been permanently damaged.” Again the evidence, one way or the other is scarce; no one knows for sure.
Evidence is scarce because no one is looking into it. How many sick or dying people does it take before the government or the companies that produce these drugs to decide to look seriously at the problem? I have no idea frankly. I would say that one is too much. But what I say or think on this matter is neither here nor there. For the time being though I can say that one of the scarier for me aspects of this withdrawal experience has been the dawning realization that I have moved into a kind of medical no man’s land. Apparently, I gather anecdotally that many physicians don’t believe there is such thing as the benzodiazepine withdrawal syndrome as described in Wikipedia. Consequently, if a patient stops taking the drug or begins to suffer “tolerance withdrawal” and complains of withdrawal, the physician who believes there is no such thing concludes the withdrawal is not withdrawal but the return of the underlying symptoms that lead to the use of the drug in the first place. The natural solution, in many cases, sadly appears to be to give the patient more of the drug or perhaps to switch the patient to a similar drug in the same family of drugs. Or as so often the case, the problem is felt by the physician not to lie with the medication but with the patient.
There is not likely to be a “cure” for this withdrawal when many believe that there is nothing there to be cured. Fortunately for sufferers, there is the Ashton Manual, the Bible, as it were of the benzo sufferer, written by Professor C Heather Ashton DM, FRCP, out of Great Britain, that details the multiple hazards, the trials and tribulations of benzo withdrawal. I have not read the Manual myself, but I have seen many quotes from it. I gather from these and from the frequency with which I have seen them that the manual serves most importantly to assure people who are suffering from benzo withdrawal that the many strange and painful things they feel and experience are not just in their heads, as a return of the original problem, but an actual thing in itself, a biochemical thing having to do drug withdrawal.
I am no expert on this biochemical thing, and at this point I doubt I ever could be. Science is hard, and one of the symptoms of benzo withdrawal is “brain fog,” which evidences itself partly in an inability concentrate. The little that I do understand roughly goes as follows. The benzos act to increase something I believe call GABA that is a critical element in the entire nervous system. GABA seems to relax the muscles. If you listen carefully, as I have, to doctor or medical shows on TV, you will hear a doctor shout when a patient goes into seizure, “10 milligrams of diazepam. STAT.” Or words to that effect. Diazepam is a benzo, and it acts to quiet the muscles and the nerves that have brought about the seizure. And in daily stressful, non-seizure situations it serves the same purpose. It calms. Problems arise, however, when the drugs are taken for an extended period. I cannot make sense myself of the bio-mechanics of this problem. Suffice to say, the drug changes the brain. The brain becomes used to having the drug, and when it cannot get it, it screams. And when the brain screams so does the whole body.
In addition to acknowledging and describing the myriad of symptoms that attend withdrawal and the fact that withdrawals–always depending on the individual–may be extended, the Manual also argues strongly that one should not, if one wishes to withdraw, do so abruptly. Or in the parlance, one should not go cold turkey (CT). Depending of course on how long and at what dosage one has taken the drug, CT can have very serious consequences including seizures and other life threatening conditions. In this light, slow tapers are recommended. How slow is a matter of debate and depends really on how much one can stand as one withdraws. I consulted with a psychiatrist and decided, in light of my apparent high sensitivity to drugs, on a very slow taper from the one milligram of Klonopin I was taking daily at that time.
The mechanics of withdrawal are not as simple as one might hope, especially when one is suffering, as a symptom of withdrawal, from persistent “brain fog.” I can hardly remember now what I did and I am amazed that I was able to do it. According to some notes I kept on the withdrawal process, I did what the Ashton Manuel recommends. As I cut back on my one milligram intake of Klonopin, I started taking in ever-increasing doses (up take) of Valium. This move from one horrible benzo to another apparently less horrible benzo is strongly recommended. This whole process involved some hard addition and subtraction (the use of numbers) and uses of percentages and such. In my notes, I find the following now nearly incomprehensible entry:
Last night I drew out one teaspoon from my .25 liquid dose of Klonopin.
That’s from a 1/4 cup of water.
One teaspoon is 1/12 of a quarter cup.
So I am down 1/24 of the whole .5 dose.
I have only done this one day. I will do it for five. So this coming Thursday, I will reduce 1/12
yet again, taking me overall down 2/12.
That would be 2/24 of the whole .5.
If I can translate, apparently, on August 30, 2014, I cut in half with my trusty pill cutter a .5 milligram pill of Klonopin. I dissolved one of those halves in 1/4 cup of water. Then before I downed the dose, I took out with a teaspoon one teaspoon of the drugged water and threw it into the sink, thereby reducing the overall dose by 1/12 (there being 12 teaspoons in a 1/4 cup of water). I then swallowed, along with the watery dose, the .25 milligrams left when I cut the pill. In five days, the note suggests, I made this reduction again. And so it went day after day, removing one teaspoon and then another until I had finished off that .25 of liquid. And then I started in on the same process day after day with the remaining .25 until one day in January 2015 there was no liquid left.
That was one side of the equation. As indicated, I offset the reduction in Klonopin (to zero) by taking increasing doses of Valium. One milligram of Klonopin is said to be equivalent to 12 milligrams of Valium. So when I was done with the Klonopin , I set about withdrawing from 12 milligrams of Valium. By my calculations, the whole process took a year. At one point my psychiatrist asked for a written update on my progress. I include it here in part as follows:
The night before my last visit I had dropped my Valium dose by .5 milligrams, making my dose for the day 4.5 milligrams. 2.5 milligrams upon retiring, 1 milligram round 6 AM; .5 milligrams at noon, and another .5 at 6 PM.
I stayed at this level for two weeks, until Thursday, July 13. Those two weeks were pretty rough; most significantly at the start of the second week I had three nights running of nightmares. I call them nightmares because, while most of my dreams are anxiety sodden, these had elements of violence not usual in my dreams. The details of these dreams now elude me, though I remember in one pounding my father up aside the head because he refused to tell me something I wanted to know.
I have now (Monday, July 17) been on 4 milligrams. I lowered the nighttime dose from 2.5 to 2. I was surprised at how quickly my sleep suffered, though the whole sleep thing has been I know aggravated by the heat of recent days.
Yesterday, in my third full day on the new dose, I was pretty miserable. My nose kept running; I ached in multiple places (calves and buttocks most especially), and had trouble with body boundaries. I stubbed my toes twice, caught my fingers in closet door, and bumped my head on a towel rack, when rising from the toilet. In general, re that area, my gut is not great. Oh, we took your advice and now ingest daily fresh probiotics (the kind you keep in the frig).
This morning I woke with thoughts of degeneration, decay and death. Not a good way to start the day at all. Terror mixed with despair. Took me a while to get moving.
I will stay at this level until Thursday, August 27, and then I will drop another .5 milligram from the nighttime dose. Unless of course things get worse than they are at the moment. Then I will reconsider.
Apparently, during this period I would break the Valium dose into three parts. Frankly I cannot remember having done this or why exactly I did it that way. But I trust what I wrote having no reason to misrepresent. In any case, the whole process was miserable and occasionally I would updose, after much self-laceration, .5 milligrams to get some sleep. Also around this time I became very agitated by the persistent sounds coming from a construction project half a mile away. The high beep-beep sound made by tractors and trailers when they back up made me think I was losing my mind. I researched the issue of back up beepers and was horrified to find that they were legally required on construction sites. There was nothing I could do. I tried not to resist the sound. I tried to go with it. But there was no rhyme or reason to it. I bought noise cancelling head phones, and they did help a little. Finally, I realized I was not going insane. Hyperacusis, an increased sensitivity to ambient sound, can be a symptom of benzo withdrawal. While this realization did not make the sound or my agitation at it go away, it did help me to feel that this terrible sense of being invaded or attacked by a sound might go away when withdrawal was complete.
Yes. the withdrawal from Klonopin onto Valium was prolonged and miserable. But the Valium had acted, if not to curtail, at least to subdue, some of the symptoms of Klonopin withdrawal. Trying then to withdraw from the Valium with no medication to subdue its effects introduced me, as I wrote in my notes, to a “whole new level of misery. A level I could not have imagined or felt possible.” Still, in spite of that misery, I was able on 5 milligrams of Valium, in the summer of 2015, to get on an airplane and fly across the country and then back. For while I ached, I was not utterly wasted. While I was in pain, I was still loaded. I couldn’t see it at that time, at that moment. But when in December of 2015 I withdrew from all benzos, I realized that I had once again been living in a fool’s paradise. As I wrote at the time, plagiarizing myself, “I have reached a whole new level of misery hitherto thought impossible.”
In the world of benzo sufferers, the day one quits is marked not by the word “quit,” but by the word “jumped.” One says, “I jumped on such and such a date.” I think because it feels like that, not so much as quitting, as a falling into the dark. Eight days after I jumped I wrote in my notes:
I can’t find the vocabulary that would effectively convey this purgatorial state of being neither quite dead nor quite alive. I ache and go about half asleep it seems most of my waking hours; my sleeping hours are more like waking than I would like them to be.
Feeling frightened by my symptoms, I decided to seek out the advice and counsel of fellow sufferers on a website devoted solely to those dealing with benzos. I am not a member of the digital generation, and find this form of communication odd and little unsettling; nonetheless, after “lurking” on the site for a while, I posted in the general category of “Withdrawal After Taper” the following query:
2 Months Out: Is this Normal?
I have not taken any benzo since December 12 of this last year.
With each new day I seem to discover heretofore unexplored levels of misery.
Daily I experience the following: morning anxiety, dread, insomnia, aching muscles, loss of concentration, intrusive thoughts, brain fog, fatigue, hypochondria, fear of death, anhedonia, depersonalization, anger, and extreme flatulence. Oh yeah, and depression. With some variation but pretty much each day the same old song.
Allowing for individual differences and circumstances, I still wonder: is this more or less normal for two months out?
To which a number of my fellow sufferers responded, “Yes, perfectly,” and “Welcome to your new normal.” This may seem like cold comfort, but honestly, at sea as I was in a medical no-man’s land, it was reassuring to know that others had felt these strange things and had survived.
And there was something too reassuring about communicating, even digitally, with people pretty much in the same boat as yourself and not likely to believe you are making all of this crap up. In real non-digital life, one finds sadly that many people seem to believe one is making all this crap up. Instead, friends, not understanding what is going on, can fall away, and family can fail to be supportive. And, in a way, I suppose, this is understandable. The benzo sufferer is not distinguished by his or her suffering in any particular way. One is not missing an arm or blind and sporting a cane. One is not bruised or necessarily disfigured in any way. And yet one feels as if one is having a heart attack. One goes to the ER, sometimes repeatedly, and is told, “Nothing is wrong.” One goes to this doctor and that. To a psychiatrist and then to an endocrinologist and is told, “We can’t find anything.”
The Benzodiaepine Withdrawal Syndrome is a lonely syndrome. Indeed, if one can no longer work, one loses the company of fellow workers. One loses the company of friends who lose patience. Family and spouses too can fall away. And why not? The benzo sufferer doesn’t feel like doing anything. He or she is not good company, whatever that might be. He or she does not want to go out. Heaven forbid. One doesn’t want to drive. One doesn’t want to shop. One does not like crowds or finding a space in a crowded parking lot. One does not “party” because one absolutely cannot drink. All these activities of the so-called normal people are simply not doable. It doesn’t take much to knock the nervous system out of whack. One morning, driving to the grocery store, I narrowly avoided a fender bender. On the way back, I saw a pile of blankets on the concrete at a corner, and as I drove by realized I was looking at homeless person trying to sleep on the cold concrete. I was home by 10 AM, and I did want to go out again that day.
For my part, aside from my spouse and a few relatives I don’t tell anybody what I am going through. Once back when I was withdrawing from an AD, a friend asked how I was doing and for some reason I told the truth saying, “Honestly I am not here at all. I am coming to you now down from outer space. That’s what it feels like.” The look on her face suggested I should never be that truthful again. Instead, if somebody asks (this does not happen frequently) I say I am “fine” or I use my well-honed, age old standby, “I’m hanging in there.” Or wanting–I don’t know what–in a moment of weakness, I guess, I will say, “Oh I did not sleep that well.” And, if they should go further to ask if something disturbed me, I will say, “Oh, nothing really. I have struggled with insomnia off and on for years.” That usually works. Most people have heard of insomnia and even of people who are insomniac and usually inquire no further. Though the kind who like to help, sometimes launch into a run-down of all the things I should and shouldn’t do to get a good night’s sleep. All of which I already know.
Having taken my last benzo ever in December, 2015, I am still now two and a half years later in withdrawal. One is warned, by fellow sufferers, that withdrawal from benzo is not a linear process. By this people seem to mean that one does not get better gradually or slowly or over night. More precisely it appears to mean, one is likely to take one step forward and two steps back, or two steps forward and one step back. Overall, I suppose “not linear” means the process of healing from benzo withdrawal is sort of backwards and forwards and off and on again and so on and so forth. Sort of. Whatever is meant by the phrase, I understand it on the basis of my experience. I am now no better than I was when I started the horrible process. Though how that could be when I know some things have changed I don’t know. It’s as if one sx goes away only to be replaced by another. For example, I suffered terrible fatigue from insomnia. Later I would sleep longer, and realize to my alarm that I felt worse than when I had slept less. I don’t know how this is possible, but I swear that it is.
Additionally the slings and arrows of daily life can throw one for a loop. I have found no adequate way to describe this. But to say, it’s a bit like driving a car with poor shock absorbers. Little, even tiny bumps in the road, that you would never have noticed with good shocks, without shocks hit like an earthquake and rattle your teeth. This is a visceral thing, having to do perhaps with the startled reflex. I drive to an intersection and I am overcome by the blinking of stop lights, the movement of cars to the left and right, as well as those pulling up behind, of the aberrant movement of a pedestrian, a bicyclist up ahead, and a bus pulling from the curb and my heart suddenly is in my mouth. My chest is in a vice. I want to scream. But suddenly miracle of miracles I am through the intersection. This mercifully does not happen at every intersection. It does not happen every day. But moments like this seem to shock the system and whatever progress one may have made in withdrawal seems to be wiped away.
Lord knows what is going on. A year or so ago, I would wake at, say, two in the morning. All would be darkness, and I was calm; still wrapped in the warm cocoon of sleep I could get back to sleep relatively quickly. But if I woke at four or four thirty, it was a whole different story. I would be flooded with anxiety. It was palpable. My muscles ache, and my mind would fill with the ugliest and most useless thoughts. “Intrusive thoughts,” in the jargon of mental illness, that came out of nowhere. In that vulnerable place between waking and sleep, these thoughts would go right through me. They hurt. Or maybe it was the knot in my chest that hurt, and the ugly thought was just a way to explain the tension in the chest, the feeling that some rodent was scurrying around, like the Alien, looking for a way out. This experience of anxiety, while exhausting in and of itself, made a return to sleep impossible. And night after night this anxiety would come like clock work, like a train on its regular schedule.
This, in the jargon of the benzo sufferer, is “chemical” anxiety. There’s no rational “reason” for this anxiety. Certainly the anxieties of waking life may descend on it like flies to a piece of shit. But the shit itself is chemical, an expression of the body. The best people seem able to come up with by way of a physiological explanation is “cortisol.” And perhaps there is something to this because scientists claim that the brain/body emits cortisol to wake us up. The brain/body releases certain “chemicals” to help us sleep and others to wake us up. If this is so, then the anxiety train that would come for me every morning at four AM has deep roots in our evolutionary history. As I understand it, human beings and many other animals have adapted to the motion of our earth. At certain times a portion of the earth you inhabit is touch by the sun; at other times it is not. Human beings and other animals developed complex biochemical systems in response to this fact–systems that wake us up and put us to sleep. Perhaps this is an activity of the “lizard brain.” I don’t know. But I would feel lying that at 4 AM with the anxiety train coming into the station much like a lizard, not waking but becoming more and more torpid beneath the warmth of the sun.
It’s a miserable shock to wake once again at 4 AM. No sooner is one conscious of that–that one is awake–than one is completely awake. Full of a sense of defeat at having once again not managed to sleep through a night for something like a month. The frustration and fatigue and despair just mount up. Along with that, anxiety too. Just how much can one not sleep before something bad happens, like falling down the stairs from inattention. And at four AM to know that once again the day ahead, when the light appears, will be trudging drudgery as one just tries to get through another day. Because one is exhausted. So that on top of chemical anxiety, there is the anxiety about feeling so damn exhausted that one fears one will fall down the stairs. And one feels frustrated and powerless because one cannot seem to find a way to insure that one will not wake up again and again at 4 AM. Every day, forever and ever at 4 AM. Sometimes, at 4 AM, with every muscle in your body aching. Sometimes sweating. At other times, with blood pounding in your ears, going away, only to start pounding again. So that, lying flat on your back, you find yourself screaming in your head “What the fuck is going on?”
So even though you are full of anxiety, and over come with despairing intrusive thoughts about your horrible future and your wasted past, you still keep trying to get some sleep because you are so damn tired. Until, you begin to wonder, lying there, if this is it. Is this the day you will throw in the towel and simply not get out of bed. It’s not impossible. Other people have done it. They don’t get out of bed. The floor does not collapse, the roof does not fall in. They don’t get out of bed and life goes on within you and without you, as George Harrison said. Why not? But for me, for the time being, that’s where I balk, every day so far, that’s where I have balked. And I am assisted in my decision not to stay in bed by a full bladder and bowel. Thank god for that, for that natural bodily prodding. So I swing my legs over the side of my bed and open my eyes. Our eyelids are little miracles, opening and shutting like that, without our even thinking about it. Little shutters that bring darkness when closed and light when opened. And it’s not that the anxiety and fatigue have gone away, it’s just that the landscape is different. The dark thoughts that were there are pushed aside by the eyes as they engage the world in a prelude to movement.
These are my two worst sx’s I think: anxiety (fear, dread, terror, despair) and fatigue (exhaustion, innervation, despondency, despair). These are fairly ordinary but there are other less familiar, more exotic feelings, if I can call them that, that attend my mornings and hit me at unexpected moments the rest of they day. Upper most when it comes to the issue of getting out of bed is anhedonia. As I have mentioned, when I smoked I got out of bed to have a cigarette. The idea of a cup of coffee along with my cigarette caused me to anticipate a pleasurable moment. Mostly the moment itself rarely measured up in reality to the anticipation, but then I believe most pleasure is anticipatory. I think it very important to have some pleasures, no matter how small. They get a person out of bed. They are a reason for living. One needs to have something “to look forward to” and that looking forward is what gets one in motion. But anhedonia means the loss of the ability to feel pleasure. At one point, some time past, I thought I had things to look forward to. I would anticipate a movie coming out and look forward to seeing it. Or I would find a book and look forward to it coming to my door via Amazon. No more.
I played basketball in high school and have enjoyed watching the NBA for years. I watch it still, but it’s not so much a pleasure I look forward to, as a distraction from my ongoing misery. It’s a reliable distraction. I know what to expect, though I cannot watch my favorite team in real time. If I don’t know the outcome, the ups and downs are just too much for my nervous system. So I tape the games of my favorite team and watch them only if I know they have won. The others, the losses, I ignore. As a benzo sufferer, this is what you have to do. Over and over, people say, in effect, since there is absolutely nothing you can do about your sx’s as you “heal,” stay distracted as much as humanly possible. But good distractions in this world can be hard to find. Too many action movies have sudden and startling big noises that make me want to jump out of my skin. Others, especially those directed at young people, are so inane that they would fail to hold my attention under the best of conditions. A distraction that cannot hold your attention is not an effective distraction. For me, a basketball game can be such a distraction only if I know my team is going to win. But it’s hardly something I can say I look forward to since I already know what’s going to happen.
Actually, I don’t look forward to much of anything good or bad, pleasurable or painful. I don’t feel like there is much of a future. My wife will start talking about something she wants to do to our place, maybe replace the carpet with pergo, or redo the bathroom sink and counter. And I will start thinking about it a little bit, and then my chest will seize up and my stomach will knot because the very idea of doing something that complicated fills me with weariness. Just think of it. You would have to go shopping, possibly to several places, and that would mean driving, and then you would have to make decisions about this or that and what looks good and what doesn’t, and figure out when to do it, and doing it would mean strange people coming into our little place and doing things. And what would I do and where would I go–when I don’t want to go anywhere–while they are doing it. I imagine myself driven from my home, exhausted, and trying to take a nap in my car. So, I ask my wife, please, I just don’t want to talk about it. Because it’s impossible.
Travel?–the last refuge of a certain sociological level of the retired. Also impossible. Utterly and completely out of the question. I will not mention all the complex and miasmal issues involved in: how to go, where to go, when to go, why to go? It’s enough to say, “I can’t stand airports.” They fill me with loathing. They are horrible places full of irritated people, none of whom I know or would like to know, screaming children, and constant incessant television noise. Not to mention the ear splitting announcements about what is leaving and when. Or the anxiety of waiting and wondering, will we take off in time, if we don’t what will happen? And then wandering in a stupor down some endless corridor to find a bathroom that turns out to be full. I think Satan designed those places. And for what? To get on an airborne, utterly unnatural, mobile tube with a hundred people stuffed and sweating into it that you don’t know and don’t want to know. For what? To go to another airport. Once upon a time I did this. Yes, but I smoked and I was on drugs. Now I can’t imagine sitting in an airport with all that racket and the anxiety about whether or not the plane will arrive on time. I would not be able to stand it, not now, when simply trying to open a bag of Ricola makes me want to slit my wrists–it takes so damn long and the bag is so damn noisy.
And then there are the things I don’t look forward to and should do. Like get a colonoscopy. I was supposed to get one last year, according to my doctor. But I didn’t get it last year because I didn’t want to. It was impossible. A colonoscopy is a miserable experience even if you are not going through benzo withdrawal. I know because I have had a couple back when I was on benzos. They have all sorts of rules. Like the day before you are not supposed to eat anything after noon, I believe. And after that all you can have is clear liquid and jello, but not red jello. Just looking at the rules for what I am not to do to insure my shit does not obscure their view up my anus makes me want to have a fit. I mean a whole afternoon and evening of not eating so nothing will get stuck in me. And them, of course, there is this liquid you are supposed to drink that will completely clear you out so they can get a good view up your anus. Once even, when things were even more primitive, I had to lie on the bathroom floor and stick an enema up my ass. Really, is this civilized behavior? Is this what we have come to. In the name of health. And of course they try to scare the shit out of you with how many people die all the time from colon cancer. Who knows? Really. You tell me.
On top of the misery of the prep, you have actually to go into a place, lie on your side, with your ass sticking out, while one person sticks a tube up your anus and another one just stands there, in case of an emergency, I guess. Who knows? They never tell you anything. To help you through this completely unnatural and humiliating situation, you are offered a potion of some kind designed to produce twilight sleep, or something like that. But Beware! Many times those potions contain Versed. That is the brand name for midazolam. A benzo! So to get myself in for a colonoscopy, I will have to call somebody to find out what concoction they plan to give me before they stick a tube up my ass, and find out if it includes a benzo, and ask them, if they do, to leave it out, and what alternatives do they have, if any. And explain why I don’t want a benzo to a person, who may not believe in benzo withdrawal syndrome, that one of the worst things a person can do who has managed to get off that stuff is take some of it again. Because it completely screws up the system.
And over a year ago my ophthalmologist told me there was nothing more he could do for my vision corrective lens-wise, because I am beyond that now, and need cataract surgery if I am ever to see tiny print again. Just think of it. Cataract surgery, that’s what they do to old people. I must be, ipso facto, one of those old people, and if so am I headed also for macular degeneration like my father? This is depressing and anxiety producing enough. I am happy of course that the procedure in its more minimal form is covered by medicare, and the doctor I saw about doing it was more than happy to do it, I could tell. Hell, it’s practically a fad now among the elderly, socially de rigeur as it were. There’s a line of you and they ferry you in one after the other like a factory. It just takes ten minutes. OK. Fine. But how the hell, given the diverse options, is one to decide what kind of lens to have put in to replace the old one’s mother nature gave you. The really fancy one where you don’t need glasses? Or the one where one eye sees far and the other near? And I have a bad astigmatism. Is it bad enough to determine my decision? I have been unable to make any sense of it. And it tires me out trying to think about it. And once it is done, it is done, and there is no turning back the hands of time. To be clear I have no desire to die of colon cancer or to go blind for that matter. It’s just that the anxiety around the doing of these things at the moment outweighs the anxiety about developing colon cancer or going blind. And the doing of these things seems moot since I am fairly well convinced I have no future.
It’s not precisely that I think I will drop out of sight tomorrow. That, of course, is always possible, but seems a secondary issue to another, and that is that I have no future longer than a day or so. I am walking, as it were, on the edge of cliff high above a great fall, and I cannot, if I am to go on, worry about what might lie around the next bend, and what if it were something awful, well, I doubt I could go on. So I take the little energy that I have and put it all into taking another step and then another and so on and so forth. I mean after I wake, I sit for a while. And over and over the same process occurs. I have vague thoughts about the past that overcome me with misery and no thoughts for the future, expect perhaps what I will have for dinner. There is no energy there, I see as I sit there, for a big future oriented project like cleaning out the garage. The garage is a heaping mess, a twenty year accumulation of paper, computer parts, cables, VSH tapes, and books, books, books. Cleaning all of that out would require an enormous expenditure of time and energy. It’s a project, a future oriented thing, as Sartre would say. But why bother, if I look at the big picture, I will die and all of it will be thrown out with the trash. Thinking of the future overwhelms me with misery.
So I do, as I sit there, what I have done over and over again many times before. I say to myself: there is no use thinking of the past and no use thinking of the future. This is another day, like the one before it and the one that will come after it, for taking one step at a time. If I can hold this thought, I feel resolved, and get up from the sofa, taking in effect my first committed step of the day. I have, of course, before this taken literal steps or I would not be on the sofa. I have stepped from the bed and down the stairs and picked up the morning paper, and sat with a cup of coffee, and then I perform my natural functions, and make and eat breakfast, as a read the comics and ask my spouse what’s the news from her smart phone. I am not lucid enough doing these things to be committed. I am torpid with misery, but my body pushes me to the bathroom, and thankfully, I still have an appetite and want to eat. But these steps are not like the first step, the one I must make after my wife has gone to work, and I am sitting there facing the day, without the stimulus of my natural functions or cortisol to get me around and about. No, at this moment, I am disarmed, lucid, and empty staring at the day ahead.
At that critical point in my morning, I have thought more than once of my former psychotherapist. I visited her weekly for about twenty five years. Finally, at 80, she retired and abandoned me to my own devices. But before she did I had the wit to ask her an interview kind of question, “Olga, I said, “what do I need to know to deal with getting old.” “Two things,” she said, “Adjustment and Discipline.” She had apparently thought about it, and was not one to elaborate. But I knew what she meant by adjustment. I had been doing that already, adjusting to the fact there were things now I couldn’t do. Discipline felt, given my background, a bit punitive and old school. But I knew what she meant. She had been, as a teenager in Nazi Occupied Paris, a student of the piano and reached, before coming to the USA, the concert level. I don’t believe she had missed a day of piano practice–and she would practice for two or three hours–in the 25 years that I sought her help. Sure, she had colds and such, and once she had trouble with her thumb. But that was what I thought she meant by discipline. Lord knows what grief she was trying to hold down and grind away with all that practice. She certainly wasn’t getting better and over time she would forget the score she was practicing. But she did it hook or crook, no matter what. That was discipline.
There’s no practical reason to do. I think it has more something to do with mental hygiene. In fact, I believe, certain religions lay out the ablutions, the washing, and the trimming, and cleaning that one must do each and every day before one steps out into it. It isn’t really about being clean and free from disease (although it may happenstance serve that purpose) and not about getting disease on somebody else. It’s that first committed step, as a leap or act of faith. And doing it and continuing to do it in a world of filth is discipline. I mean you aren’t going to win and you know it. But you do it anyway. That’s what I think about anyway, sitting on the sofa, and looking out the window. And before I know it, I am on my feet and heading for the kitchen for my first “chore” of the day, washing the dishes. Yes, the dishes are endless. But that need not stop you from cleaning them each and every day. You do not let them pile up. That’s discipline.
That’s a first step in taking the day a step at a time. The next step, after washing the dishes, is removing all the paraphernalia from the kitchen granite and cleaning it with a granite cleaner. Once a week, I not only clean, I polish. After cleaning, I straighten and wipe down the kitchen. Then, depending on the day, I hoover the downstairs carpet and the kitchen tiles. Or, on an alternate day, I just hoover and spot wipe the tiles. I have discovered, doing this, that there’s a lot to keeping a place clean. I had never taken seriously the claim, “A woman’s work is never done.” If that work is cleaning and keeping things clean, then that is true. Once you start cleaning, you see how much there is left to clean, those spider webs up in the corner, the air vents on the oven need to be cleaned, perhaps with a tooth brush, since I can’t get my finger in there, and there are those crumbs in the toaster that are always leaking out. And the tiles are just endless. Since my eyes are going, when I stand erect, and look at the floor I think I have done my job, but when I bend over to spot wipe some stain suddenly a whole new array of crumbs and other detritus comes into view. So the individual steps it seems can be broken into individual smaller steps….
At this point, I have to stop and take a step back or I could find myself sinking deeper and deeper into endless steps. I feel overwhelmed. I must look at the forest instead of the trees. I have only so much time in the day. So I move onto some larger chore. I go to the grocery store perhaps. I go to Costco once a week. It is not far, but it requires driving. I do not much want to go, but I want to eat and going to Costco is my weekly stocking up. I go early, as soon as the doors open, to avoid the rush, as do many other elderly or old people. In fact I am surrounded by old people. They are very slow and irritating. That is one of the few perks of being old and retired. You can shop to avoid the crowds. But then you have to deal with old people who move like molasses. I do not shop. I have a list and know exactly what I am going to get and where I have to go to get it. I become very irritated when for no good reason the owner of the store sees fit to move merchandise about from place to place. I want it to be in the spot where it was the last time I bought it. I also become irritated when all of the bananas are over-ripe and I have to decide whether to get them here or at another store I patronize. I do not smile at my fellow customers or ever say a word to any of them. I am intent on getting to the checkout line before they become crowded. I do not like waiting in lines….
I do not understand why I should ever stand in line. A business should have all the people necessary to take your money as quickly as possible. I mean what are they in business for: to take your money. That should be their number one goal: to take your money. When I have to wait in line, I want to scream, Will somebody please come and take my money. That should be the one thing they do efficiently, don’t you think. Instead I get to the check out and half of the check lanes are not activated. Nobody is manning the registers, and people are waiting. Where are the people to man the registers? I see people wandering around in the back there. This is especially true at the pharmacy. There are always people in the back doing things, a line of people ten deep, waiting to give you your money, and one register has a person working it. At the pharmacy I scream in my head, “You, you, over there, doing whatever you are doing, and never looking up, and pretending not to notice the line is ten deep, why the hell don’t you come over here and please, please, please, take my fuck’n money! That’s the easiest thing you have to do, and you can’t seem to do it.”
I tell myself to take a deep breath. Go into the meditation mode! But it doesn’t work. I tell myself I am in no rush. After all, I am retired. I have no appointments on this day. There is no place to be. Why am in such a rush? But I can’t reason myself out of it. There is no reason. Waiting is just not my form of being in the world. My form of being in the world hates waiting. And why the hell should I have to wait? And while I am going through this misery that is aggravated by benzo withdrawal, I am suddenly through the line and out the door. And realize maybe I don’t like standing in line and waiting because I am so G-damn, f’n tired! So I take all the stuff out of my cart and put it in those grocery bags you have to buy now at the grocery store. Because I can’t carry those heavy boxes anymore. And put the bags in the trunk. Before taking the next step in my step by step day which is to go to another grocery store to buy things that do not come in giant family size twenty pound bags.
Every step in my step by step day seems hard. I mean where is the store that sells portions for the elderly. The whole shopping business makes me feel worn out and reminds me that I am 72 years old and could drop at any minute. The whole damn business is anxiety producing. I try to back my car out of its spot and a massive SUV swings into sight. I almost jump out of the seat. It passes, but now I am backing up gingerly, gingerly because I don’t want to hit anything. But it’s hard for me to swivel my neck, and I am aware that I am backing up really slowly and blocking the lane like those elder drivers I have excoriated, screaming in my head, “Go home. And go to bed. If you can’t drive anymore. Stay home.” And the other store is worse than Costco. The parking lot is a perpetual traffic jam, and you never have any idea how long the lines might be. And I have to walk by a cadre of the homeless who hang out on the side of the parking lot, and each time I pass, I have the urge to give one of them twenty dollars. But never do….
I get back to my condo. The whole shopping ordeal has taken maybe 45 minutes. It’s not even 11. There are a hell of a lot of steps left in this endless day. And that’s what the days feel like when I am at the end. I look back and I can’t believe I did that just this morning. I took that first step just this morning. It feels like this morning was yesterday. I am looking back over a massive expanse of time, divided into discrete steps, and every step took forever. Back when it was morning. The light was out. I sat with my coffee. Now it’s dark, and I must prepare for the next step, getting ready for bed. This too is broken into discrete steps–brush teeth, take meds, take blood pressure, get blood pressure to go down, blow nose several times. Fart, urinate. There is no higher meaning, just the visceral passing of formless moments into each other. There is no forest, only trees. And sitting there in the dark, I think, “I made it through another day.” That is it. That is all there is. I have produced nothing. I have not contributed to the betterment of society, or addressed a social or political evil. I have existed through another day, and I am proud of it. It’s a small victory but mine own. Because that’s what I am doing…waiting, waiting for this benzo suffering to pass and to do that I have to get through yet another day.
The days have names and I know them: Monday, Tuesday, Wednesday, Thursday, Friday, Saturday, Sunday. In the past I knew the days by what I had to do on them. Three days a week, for example, I had to teach. And Fridays–oh miserable me–were the days we had endless, meaningless meetings. Now I know it’s Sunday when I open the front door and the paper I still have delivered is extra thick. And I sit down to breakfast with the Sunday Comics which are full four pages. For some reason–I don’t know why–I suddenly realize it’s Sunday. Another week has passed. And I don’t have the faintest idea what happened to it. It’s as if for the whole week I have sat at that spot looking at the comics, and as I do so a whole week passes. I feel faintly ill and faintly terrified. Another week gone and one step closer to the grave.
And what do I have to show for it? Nothing. Positively. And that, from the perspective of a benzo sufferer, makes it a good week. You don’t, as a benzo sufferer, want anything to happen: no joy, no terror, no excitement, no boredom. Anything at all that happens suddenly and out of nowhere can make you jump out of your skin and kick your whole CNS into an uproar. It’s good that I am retired. Not working reduces the chances for massive irritation. I don’t know how people who are working could ever get off of their benzos. The aggravation of office work especially would destroy you, and just the need to get the work done, in your state of fatigue, could set off fire alarms of anxiety. Physical labor too, I have heard, can send the CNS into a tailspin. So I am lucky not to have to work. Because I know at this point I simply would not be able to do it, if I had to do it. At the same time, back when I worked it felt as if things happened. For example, back then there was the work week and then came the weekend. When I was in the work week I looked forward to the weekend. When that ended on Monday I lamented its loss. Now the days are all the same. The Many has become a giant, monotonous, mountainous One.
But while the days pile on days with monotonous regularity, the individual days are not perfectly so. In my case at least the morning hours are the very worst and the afternoon hours, by comparison, are, if not precisely better, less miserable. I don’t know why this is the case. It just is and probably has something to do with my personal metabolism and biochemical, as well as genetic make-up. In other words, I don’t know why. For some people this is not the case. They are worse in the afternoon or evening. But the morning is worse for me, and if I didn’t know sitting there before I take my first committed step, that this is the case, I don’t know how I could tolerate my mornings. I can tolerate them because somewhere deep in my body I am counting on things letting up a bit as the day goes on. My spouse, seeing me in my morning misery, tries to remind me that things will get better as the day goes on. But that’s no help. When I am in the morning misery, I cannot see out of it or past it. But as the morning wears on, every so slowly, the quality, if not the quantity, of the misery alters.
The change–and it is a change–culminates in my getting prepared to do the one thing I have found that I can do and change my mood and at the same time get though the f’n afternoon. I started this activity way back before I started this miserable withdrawal. Back in the old days, when I was still taking a benzo, my whole metabolism would tank completely in the early afternoon. I was fit for nothing, so I decided, when my schedule allowed, to take that time in the early to mid afternoon, to work out. By which I mean to say, “exercise.” I don’t work out if that means lifting weights and making grunting noises. I am way too old for that. I have had surgeries on both shoulders. I am not going to risk that part of my body with weights. Instead, I get on a stationary bikes, set to a medium low setting, and make my legs go in circles for eighty minutes. No more, no less, with no variation. My goals is not to improve my body or lose weight or put on muscles or achieve tone. No, I want to break into a sweat.
While I move my legs in a circle, I watch the TV that is attached to my stationary bike or a listen to my Ipod, that is set to a “classic rock” station, or I read from my Kindle. Sometimes I do all three at once or one after the other. I also run through the TV channels to see if there is a movie on somewhere that might prove distracting. I do not watch sports and I try not to watch the news. This is hard to avoid though at times because there are monitors on the other machines and huge monitors set on the wall in front of a row of treadmills. These are mostly older people, passed sixty at least, like myself. In fact we have in the early afternoon a bit of an elder crowd. Sometimes I speak briefly with my fellow exercisers, and I wave hello when they come in and goodbye when they leave. At heart I am a friendly person, and have nothing against anybody as long as they don’t make me wait or get in my lane or at sitting on the stationary bike I use everyday starting at about 1 PM.
As indicated I started doing this back when I was still on benzo and suffered from early afternoon tolerance withdrawal, and I have kept it up daily now for about three years. Every day at the same time. The people at the front desk look at the clock when I walk in and say, “You are early today. (like by two minutes), or “You are late today.” like by two minutes. And occasionally another regular exerciser will take a bike near mine and say, “Do you live here?” And I will joke like yea, I have a futon around the corner. I don’t know why people have to be irritating. I mean I want to say, “F U dickhead.” Because not so deep inside I am sure the other people at the club have staked me out as a raving weirdo who is here–have you seen that guy?–every f’n day. Something has got to be wrong with that guy. And, of course, I would be the first to acknowledge, there is. But it is hard as I have said to explain benzo withdrawal to people who have not experienced it. It doesn’t seem worth the effort.
The closest I get, with most people, by way of explanation for my daily attendance, I am here for my brain as well as my body. And I leave it at that. Maybe the horrible anxiety of the morning is by afternoon starting to retreat of its own accord. But I think too that the exercise with the changes it brings to my body also serves to soothe and level out my brain. I can read on the bike. I used to read all the time anywhere. Not any more. It’s a matter of concentration. Most of the time I just don’t have it. Some times at points in the day, I suffer from the “brain fog.” The term is pretty self-explanatory, but the web reports, this is not a technical, medical term but a commonly used phrase “that sums up feelings of confusion, forgetfulness, and lack of focus and mental clarity.” All too often in the day, I lack focus and mental clarity. This is a cause for me of great sadness. More than most people, I think, I relied on my brain to get me through the day as a source of entertainment and distraction. I was always a curious person. I wanted to know things, but this has gone away. I made my living reading, writing, and talking, and now I find it hard, a strain, to do any of these things. I will be talking with some one and my brain will get stuck on a word and nothing but a stumbling stutter comes out of my mouth.
Part of this is age, of course. We elderly are mostly scared to death that we will develop Alzheimer’s or become demented. We hear tales, and we see it happening to people that we know. So part of the brain fog is aging, I guess. But it’s also benzo withdrawal because much younger benzo sufferers report brain fog and odd problems with memory. So it’s a comfort in a way to sit on the bike with my legs going in circles, and feel that I can wend my way through a longer article, and perhaps even enjoy what I have read. I have to be careful though. A good deal of what I read is painful. It hurts to read about the misery and horror in the world. It hurts to see the stupidity and the cruelty. So I have to ration myself. It hurt back in the old days too, but as a benzo sufferer everything–I mean everything–hurts more.
And after I am done with the bike and my reading time, I go to the pool and swim a half a mile. Back and forth, no stopping at the ends, for 18 laps in this particular pool. As with my exercise, I don’t exert myself and I am restrained also by the thought that I might do damage to my surgically repaired shoulders. When I have finished my swim, I sit in a hot tub for fifteen minute, and after that I go into a steam room for fifteen minutes. I shower, then, and drive home. I have managed to tire myself out and drain away some of the misery that overwhelmed me in the morning. I am, of course, still miserable but it seems more manageable if only because I am on the verge of going to sleep. And that’s part of the point of the exercise too. I am convinced that the time I put into exercise each day is what allows me to drop off to sleep every night. True, I frequently wake up an hour or two or three hours later. But I am able to go to sleep easily without any form of medication because of the exercise. This is a blessing.
It’s such a blessing that no sooner am I back at my place than I take my sweaty clothes out of my bag and put dry ones in it, and take out my water jug, refill it, stick it to cool in the frig so that it is ready and waiting when I am once again getting ready the next day to head out to the club. And I know too that tomorrow at noon I will be so sunk in my morning misery that the idea of driving to the club and doing that exercise all over again seems just impossible. But the stuff is there ready and waiting to go. All I have to do is put in my Hoka’s and drive over there. Once again, that’s where discipline comes in. But for the moment, with my clean, dry clothes in the bag, and my water cooling in the frig, I can collapse in my big chair, hydrate, and watch the talking heads scream at each other for an hour. For all intents and purposes my day by this point is done. I am in the stretch as they say and can amble home. It’s getting dark, and I don’t go out when it’s dark. So no driving ahead. When I have put up the coffee for next morning, I will be done with my chores for the day. I have to clean my teeth of course and take my nightly meds. There’s a lot less meds now at night. I have not taken a benzo now in 27 months. If I am lucky I will get a night’s sleep. The anxiety train will come for me around 3, and I will wake up feeling like shit and lamenting my wasted life.
That, in a nutshell, is my day from dawn to dusk, from light into dark. And, as previously indicated, it’s pretty much that day after day. Benzo sufferers make frequent reference to that movie with Bill Murry, Groundhog Day, because it feels like that. You are just repeating yourself, but that is about all you can do. And discipline, discipline requires it. You take this step and then that step and yet another. And with each f’n step, you feel like a character in a Beckett play, saying “I can’t go on, I’ll go on.” I feel sitting there on the couch, or before I go to my car to drive to exercise, I feel “I can’t go on. And yet, I go on.” Because you know, as Beckett says, “There’s nothing to be done.” That’s right. There’s not a damn thing this way or that you can do to alter the situation. All that choice stuff is long dead, over and done with. There is nothing to be done. But wait. Or it’s like hell. You can’t go over it, you can’t go under it, you can’t go around it. There is only one way out, if there is any way, at all and that’s to go through it. If you are going to go on, that is. You just have to go through it.
But for all the boredom, all the monotony of it–there is some variation. I don’t think in this light that I have quite done justice to the variety of the sx’s. Mostly I have talked about anxiety, of course, and fatigue, and both of these together as depression. But there have been other things too, like anhedonia, with technical names. Two of the most prominent among these are depersonalization and derealization, or, in the benzo jargon, dp/dr. Honestly, I keep forgetting which is which. They seem to be interrelated. But according to the web, “derealization” is a feeling that the external world is not real. I suppose this is meant in some sort of literal way. Though I am not sure how. I do remember on one occasion looking at buildings against the horizon and feeling that they were actually card board cut outs. I mean if someone had asked me if they were cardboard cutouts I would have said no. But that’s what they looked like. If someone were to ask me if I believe the world ends when I end, I would say “no.” The world is real, and I am not. Perhaps that is depersonalization. But according to the web, depersonalization means looking at yourself from the outside. In this case it would seem you are the external reality you are looking at. I have read of people who under great stress, in situations of torture perhaps, who say that it feels as if they have left their bodies and are looking at themselves from the outside.
Maybe I have felt this. I am not sure. One day, as I sat on the edge of bed, as I was getting up, my arm moved. I saw it move and felt it had moved of its own accord. I had not willed it, I thought. It was as if part of me was no longer part of me. I suppose I was observing myself from the outside. But I do that all the time I less literal ways. In fact, I would say I am almost constantly observing myself from the inside, though the idea that you are observing yourself would seem to imply you are doing it from the outside. But I have to watch myself. Some days, I seem constantly to bump into things. The back of my hands and my arms are black and blue from bumping into things. If I want to avoid this I have to watch myself. When I get in my car, I anticipate anxiety and agitation, and think, “You had better watch yourself.” And in the middle of benzo misery, I constantly watch myself trying to fathom where the misery is taking me. And this goes on, I would say, almost constantly. I think it’s a bi-product of anxiety. I feel uncomfortable in my own skin.
But sx’s like these–dp/dr–are the kind that make benzo sufferers wonder if they are going insane. These sx’s though can be very confusing. People in dp/dr sometimes claim that they are empy and feel nothing, yet they must be feeling something or they would not be worried, upset, or concerned about feeling nothing. At moments one feels words are useless to describe the condition. “Words, words, words,” as Hamlet memorably says when he is getting fed up with them. It’s like those moments in the movies or real life when a tragedy of some sort happens, and inevitably some spokesperson say, “Words are inadequate.” Of course they are, but most of the time we don’t care or just don’t notice. Words do their work, pointing at this or that, or directing activities. Most of the time, in the pressure of daily life, we inhabit what philosophers like to call “natural consciousness.” But under the pressure and stress of things like benzo withdrawal the comfort, the connection with things that natural consciousness supplies, can break away and everything you had taken for granted can seem strange and not in a pleasant way. I look at my spouse, for example, and I feel that the word “woman” does not quite capture the strangeness of the fact that there are women. Or looking in the mirror the strangeness of the fact that there are men. I understand what women and men are for I suppose. Reproduction–but “honestly”–really? I mean, “Is that all there is?”
This may seem much like a thought, something philosopical. But, even if it is, it is accompanied by or participates in a feeling I feel in the pit of my stomach. I suppose it a precursor to nausea. And I have the image of being dragged down a long flight of cushioned stairs by my feet and on my back, and every time I go down a step, my head bumps on the level below. For the moment that my head rests on a step, I am unconscious, sleeping perhaps, and then my head bumps. And I am aware of falling, and then I sleep again. And it goes on and on like this all day. I am swimming, and I am in my body, and I am thinking of nothing. I hear nothing, I see nothing, and then I am awake again and aware that I am in the water and swimming. This goes on and on, off and on, all day. I don’t know when it will come, when it will come up behind me and hit me in the head. And I feel that feel in the pit of my stomach. I think it is fear.
I am out of my body, and then, with what feels like a bump, I am back in it. And sometimes, it is a real bump. I struggled to get out of bed. I am awake and now I am moving, and then I stub my toe or I feel a stabbing pain in my ankle, and I am over come by the reminder that I am old and decaying. This of course is happening everywhere to everybody. We are decaying. But most of the time we forget it, sometimes for long periods of time, but when you are old this capacity recedes as the possibilities for aches and pains increase. I am half way across the room and I groan. I bend over. I don’t know how to go on like this except, you know, to take another step, and one thing the withdrawal process has taught me: these things come and go. If you can wait, if you can breathe deeply, if you can take that next step, they go. This too will pass, the Bible says, and it does. The only problem is: it comes back. Day after day.
Perhaps the most commonly mentioned form of anxiety among benzo sufferers is what they call “health anxiety.” I think this used to be called hypochondria. But one thing for sure the benzo sufferer does not feel that he or she is in good health. Some have anxiety so terrible that the can’t eat and vomit in the morning upon waking. Or you have pains in strange places, as in the pelvic floor, and you begin to wonder if perhaps you have a really bad disease of some sort. This is even more the case for the elderly benzo sufferer, like myself, who sees people he knows dropping around him, not to mention the culture figures of his youth that seem to pass away daily. Time does not stop. Nothing can stop it. So as I read it, health anxiety is a mask for good old fashioned death anxiety. This is common enough I think. We do everything we can not to think about it, the way it gives the lie to all our works, and dreams, and hopes, and loves. People have been disturbed by the transcence of things for as long as there have been people. There’s nothing new in this; it’s just that benzo sufferer it never stops being new.
At this point one begins to agree with those among benzo sufferers who contend that
“withdrawal” is not the appropriate word to describe an experience that continues two years and sometimes much more after one has ceased to use the drug. I believe they may be correct. I have withdrawn, for example, from cigarettes, and while that was a painful process, I suffered that withdrawal, after I quit completely, for only a few months. One becomes more and more over time inclined to agree with those who contend that what the benzo sufferer is experiencing is not “withdrawal” but “brain damage.” While the brain of the cigarette addict wants or craves the effects of nicotine, I, as a benzo dependent, have never, ever wanted or craved a benzo in the way I once craved a cigarette. What I may well be experiencing is not “withdrawal” but the scream of a brain that has been laid waste by a prescribed drug.
In a way what one calls the experience makes no difference if that is, at one point, the withdrawal goes away or the “brain damage” is corrected. But the word choice does make a difference about how one experiences “it” whatever the word one uses to describe it. Those who tend to use the word withdrawal tend to be more optimistic. People withdraw they know and then what it was is over. In fact, among the optimistic, the horrible symptoms of “withdrawal” are cast as positive. The miserable experiences of anxiety, depression, muscle aches and so on and so forth are signs they say that “the body is working” to restore itself. These sufferers I would say also incline to be “purists.” They say, “Leave the body alone. Take no supplements, no other drugs. Clean up your diet. Drink plenty of water. Avoid over-stimulation. Do not drink alcohol. Do everything you can think of not to interfere with the body’s natural healing powers. And wait.” The others, whom I will call realists, tend to say, “No, the horrible feelings you are feeling are not signs the body is healing. They are signs, quite evident ones, that the body is in Pain! Pain is pain. And if you are smart you will do what you can to alleviate it.” This group is much more inclined to take other drugs, to experiment with supplements, and the various forms of marijuana now coming onto the market.
Perhaps the crux of the debate lies in the word “withdrawal.” One withdraws money from a bank. One does not spend forever making this withdrawal. One withdraws from a relationship; sure this can take a lot of time but one does not withdraw forever. “Withdrawal” implies a movement of some sort in time, and as such, it has a beginning and an end. Withdrawals end. That’s all there is to it. But “brain damage,” everybody knows, is not a motion in time. Brain damage has a beginning of course. But one knows it does not necessarily go away. Thus, among benzo sufferers, one finds people who say there is no cure for this. One must accept it. That’s all. In all likelihood one will continue in this reduced and diminished state forever. One is like a person whose back has been broken in a car accident and paralyzed forever from the waist down. You can complain about what happened. Beweep your outcast state. Or you can go on living as best you can with the condition. All you have to do is give up hope. And accept and believe that any life is better than no life at all. Except when it isn’t.
These are the kinds of questions and issues that might befuddle anyone with a painful and possibly terminal complaint. To go on in hope, or to give that up and grit one’s teeth. Or they might be the questions and complaints of a person not suffering any disease but trapped in an intolerable situation, in a prison, say or an internment camp, making do from day to day with no prospects for the future. Here one wants to say is where I am. I must live my life here and nowhere else if I am going to live at all. OK. But if the pain continues, if the restrictions and limitations persist, one is inclined to say, “Yea, OK. I am alive. But I am not living.” Benzo sufferers look out their windows and see people moving around and going about their business. Those are the “normal” people, people who don’t know what they have, as they drive effortlessly from place to place, doing what they do, not feeling their brain and their bodies dragging with every step. And the benzo sufferer envies those people and hates them. Yes, they are alive, and they don’t even know or value it.