When we use swear words in speech, there are certain do’s and don’t’s. These have somewhat changed over the years, but I notice that despite the loosening of taboo, most people are cautious when using these words, and would agree with the statement, “It depends on the situation.” I know a few people who choose not to use these words ever, and others who come out with the “F” word a number of times in each sentence they utter.
Toward the end of his life, Joe used the “F” word indiscriminately. It wasn’t that he was angry, but rather that he’d adopted it as an adjective to use in a way that I use the word “wicked” in a sentence. I believe he was hardly aware that he was doing it, and had no clue that someone might not like hearing the word. People around us realized this, and lovingly forgave him. They knew that when he came up with the “F” word, it was more often than not a sign that he was overwhelmed with positive emotion, or extremely impressed with something, such as, “That’s fucking amazing!” I forgave him as well, even though I was occasionally embarrassed at places like restaurants where there were families seated nearby who may not want their kids to hear.
Which brings me to my next point: these words are still considered “adult language.” So in many families, it is considered taboo to say these words in front of kids or to teach a child to use them. We are warned of songs and movies that contain “adult language.” In many situations, it’s the law that this disclaimer is stated in reviews, introductions, and previews. If “adult language” shows up in a movie, it may be given a rating that indicates it’s meant for older audiences. If a movie is rated G, rest assured that you won’t find a single swear word in it. But of course it’s rather naive to believe that a child won’t learn these words as his or her English vocabulary increases.
As a kid growing up in the sixties, I was a latecomer to this type of vocabulary. To shelter a kid from “adult language” was the norm in those days. Sure, my dad would come out with “damn” at times if he accidentally hit his finger while trying to hammer in a nail, so it wasn’t like I hadn’t heard the word. It is weird how a kid mind works. For whatever reason, if “shit” had ever been uttered in my presence, it didn’t register at all until I was taught the word by another kid, who told me it was a sin to say it and made me promise I wouldn’t taddle on her. Eventually, we decided that some swear words were “dirtier” than others, so we ranked them. “Damn” was barely a swear. “Shit” was fairly bad. “Fuck” was an absolute no-no. We didn’t even think about “ass.” Ass was a kind of farm work animal that was mentioned a zillion times in our very own Bible, which of course among us Jews meant what the Christians refer to as the Old Testament, or, more specifically, the more holy part of the Bible, the Torah, or Five Books of Moses. Yeah, there are asses all over the Torah. I don’t recall hearing the word “asshole” until well into college. These swear word compounds, such as “motherfucking” or “bullshit” weren’t used much back then, at least to my recollection, with the exception of “Goddammit.”
My dad said “damn” and “goddamn” quite a bit, but usually he’d mutter these under his breath and never used them in his “lectures” to us about poor grades or about the evils of faking an illness to stay home from school. He’d swear to himself while fixing things if the fixes weren’t working out. Occasionally, he’d get pissed and say, “Goddammit, Julie, can’t you see I’m busy?” or something like that. My mom generally didn’t swear.
When I was in second grade…let’s see, I must have been just turning seven in the middle of the school year, in January…we went skiing and I had a bit of a tumble. I had a minor ankle sprain. I think I spent only a day on crutches, maybe two or three. It didn’t hurt but it was a good way to get excused from stuff I didn’t really want to do, such as making my bed or cleaning my room. My mom, remembering the advice of an aunt, had enrolled me in a music class, but I used the sprained ankle as excuse not to go. (Actually, this kid Robbie Blake, who used to tease me horribly, attended this class and terrorized me with a clave drenched with his saliva. Claves are generally used in pairs. These are wood sticks you hit together that make a nice plunking sound upon impact. I haven’t a clue if he had the other clave in his possession, but my main worry was the germ warfare.) So I was delighted to use the sprain as the perfect excuse to get out of going to this music class. My excuse worked brilliantly. A few days without being tormented by Robbie was very nice.
It came time for Show and Tell. Do they still play this game in schools? I got up in front of Miss MacDonald’s class, my homeroom, and did my little song and dance about “damn music lessons.” I was clueless that this wasn’t said in class or anywhere at the school. Miss MacDonald took me aside and lectured me on my inappropriate language. I was so, so embarrassed and I rarely made any presentations for Show and Tell for quite some time.
I believe I was in junior high when my brothers made an amazing discovery: Philip Roth’sPortnoy’s Complaint. Yep, they had leafed through the pages and bookmarked (a real bookmark? Huh?) the pages where there were zillions of swears. We read this in secrecy, over and over to ourselves and each other, clueless as to what was going on in the book. Looking back, I am fairly certain that our absolute favorite passage was just someone’s rant. There was a big problem that my brothers and I ran into when this paperback book ended up with its spine creased right at that page. I think it was then that our parents found out. I was embarrassed. We weren’t punished, though. The book was right on the bookshelf and not hidden away somewhere. It wasn’t like we’d gone leafing through my mother’s underwear drawer.
The word “nigger” had long since change status, but was far from the swear word it is today. My mom explained that the proper word was “negro,” and that “nigger” was bad because it was slang. We weren’t allowed to use slang, believe it or not. The explanation as to what constituted slang was very confusing. Slang was for low-lifes, my mom explained. We are a proper Jewish family.
In our neighborhood, we kids joked that parents, upon hearing their kids swear, would put soap in the kids’ mouths. We kids debated at length whether this constituted morally appropriate punishment. I heard rumor that there were a handful of parents that did, in fact, do the soap thing. They were probably from the same families where having Dad take off his belt to dole out punishment was an everyday occurrence, but that’s pure speculation on my part.
I believe it was one of my brothers who sang the praises of the word “fuck.” He pointed out that it was perhaps the most versatile word he knew. What I know now is that when a word becomes that versatile and flexible in the way it is used, it automatically becomes meaningless. After all, if one were to say “fuck you” to someone, what is one saying specifically? Nothing harmful, really. It does not constitute any kind of threat in the legal sense of in any other way. It says nothing that is tangible, so how can it truly be an insult? Saying “fuck you” causes no bodily harm. Bad vibes, yes, if you see human relation in terms of vibes. One thing is clear, though, it is generally considered to be a rude thing to say. One has to be careful when saying it in friendly manner or in jest, because surely it can be taken in a way that is not intended.
The last time I said the words “fuck you” to anyone, if I recall correctly, was while I was a patient at Walden Behavioral Care. This was after I had gone to my room and burst into tears in utter frustration because once again, I’d tried to make a point while in a group and I’d been interrupted and told that what I was saying was “inappropriate.” The staff absolutely loved using the word “inappropriate,” a word that is often used while correcting a child’s behavior. Of course, I hadn’t even finished making my point. My point was quite appropriate. I was interrupted mid-sentence, in fact. As a writer, I abhor censorship. I was furious. This was the one meeting I literally walked out of.
When you’re locked up and completely under control of these staff people in an eating disorders unit, that is, all bodily functions controlled and monitored by staff, all conversations monitored and eavesdropped on for “appropriateness,” you feel so, so vulnerable. If you have never been to one of these places, you just don’t know. The idea is that we are to completely give up all control over ourselves and bow down to these staff and their so-called research-backed “treatment.” They make every attempt to brainwash us into thinking that we know nothing, we are totally wrong about the world, and they are always, always the right ones. For some unfortunates, this brainwashing lasts a lifetime, and this is precisely how people are turned into chronic mental patients. I’ve been there, trust me.
In my utter despair, I ran to my room, burst into tears, and let myself have a nice good cry. I sobbed aloud. A staff person came in after a while and, assuming wrongly I was approaching a state of mental instability instead of reaping the benefits of letting out my frustrations aloud, attempted to tactfully calm me, saying, “Julie, deep breaths….” I was so furious, only because of her attitude, that is, her desire to censor my nice good cry in the name of keeping this unruly patient “under control,” that is, control of staff, that I blurted out that lovely two-word phrase, “Fuck you.” The look of shock on her face was priceless. I knew all along that the three actions I’d taken, that is, walking out after being censored, sobbing loudly, and then making the statement, “Fuck you,” were symbolic acts done as a matter of principle.
So in comes the covering weekend doc to see patients. Let me tell you about weekend doctors: These are highly paid folks who see patients for about two minutes each, or not at all, and charge a zillion to their insurance. At Walden, specifically on the eating disorders side, our weekend docs varied in quality of advice and prescribed “treatment” doled out. Most were residents from nearby hospitals. It is the law that while inpatient you have to be seen by a doctor every day, or at least I think it is, so this was all done as token so the hospital could say it had been done. We were told by staff that the weekend docs really couldn’t do anything, anyway, except to prescribe something like an antacid or Tylenol, or, in rare cases, to respond to an emergency. The weekend docs varied, like I said. From my point of view, some were worthless, some were…shall I say, assholes?…and some were darned interesting to talk to. Once, one of them took the time, quite a bit of time, actually, to carefully read my chart, but this, trust me, was a glaring exception, and this didn’t take place at Walden, hardly. (Let me add that most doctors of every specialty in most hospitals do not read patient charts but lie and say they do.)
It was no surprise to me, after having made this “fuck you” statement, that I was assigned as first in line to see the weekend doc. The staff, or, rather, most of the staff, probably figured I needed to be heavily medicated, that is, chemically forced to shut up and obey. Meanwhile, I had done quite a bit of written analysis of the situation. I considered myself well-prepared to see this doc. And I hoped I wouldn’t have to deal with one that fell into the “asshole” classification.
I walked in. The young doc I saw before me was a bearded guy, wearing, if I recall correctly, the classic hospital uniform often worn by nurses on medical floors. They no longer wear white, neither males nor females, except for their lab coats. This garb consists of loose button-down shirts or shirts that are snapped and have handy pockets, and drawstring or elastic waist pants that resemble the “johnny” pants often worn by patients. Women might wear flowery tops, and nurses in pediatric wards might wear teddy bear tops or tops that have candy canes, confetti, and ice cream cones printed on them, or perhaps cutesie cartoon kittens and puppies. You get the idea. The guy had a pen in his hand and my chart already out there before him.
He grinned at me. I grinned back. Our eyes met.
Anyone who sets pen to paper is a writer, but I was the only patient there, to my knowledge, with graduate training in writing. My training gave me incredible ability. I was only then beginning to realize this power, to seize it and put it to good use. So the fact that I had my notebook, with my writings inside, right in my hand while I sat there gave me all the confidence I needed.
The doc had already been primed by the staff, of course. I knew they’d told him I was “out of control.” I knew they’d hoped he would medicate me so I’d be less of a nuisance and less of a threat to them. I was a threat, actually, because I challenged the lies they used to keep control over the entire patient population.
The person he saw before him was hardly out of control. She was intelligent, well-educated, well-poised, witty, and articulate. In fact my skills in these areas were emerging rather suddenly and were a delight to me. With my written notes to back me, I told him in the most organized fashion I could, the story of what had happened. I ended with the statement I made a bit ago regarding the absolute harmlessness of the phrase “fuck you.” I pointed out that I had not hit anyone or caused bodily harm and I had not harmed myself. Then I said, “You know, doc, I could have said something far, far more hurtful, but I didn’t. I could have said, “You’re fat.”
Even before I said this, I had already won him over. We launched into a lively, intelligent, and enjoyable discussion. We laughed quite a bit. He seemed curious about my writing, so I shared a bit about my history, how I earned my degree…stuff like that. I asked him questions about his own life, how his studies were going, and I must say, of all the talks I had with doctors the entire time I’d been there, this was the most enjoyable and stimulating. I skipped out of there, precious notebook in hand, grinning at the nurses, whom I guessed would soon hear of the outcome: no meds, no chemical restraints for me. No sirree. Mostly because of my well-thought-out analysis of the words, “fuck you.”
Yes, writing is empowering. It’s the most empowering thing I’ve ever done. But powerful writing cannot be overdone or it loses its power. If you use too many exclamation points, they lose their power. If you use all CAPS, you risk discrediting yourself. And the same goes for overuse of swear words. Depending on your style, a swear word can be used to shock or amuse, or both. You might have one of your characters swear, and the meaning, intensity, and perhaps shock value of the swear will vary depending on the character. If the reader sees too much “fuck this” and “fuck that,” the word “fuck” fades into invisibility, losing all meaning and power.
I learned this the hard way while writing my chapter “Walking the Line” in my soon-to-be release-in-paperback memoir, This Hunger Is Secret: My Journeys Through Mental Illness and Wellness. The voice of my character, that is, my voice, is a bit different in this chapter from the voice I wrote in in other chapters. My awesome advisor at Goddard, Beatrix Gates, was quick to point out my overuse of swear words. She made many suggestions as to how I could trim them out of the text, showing me line-by-line examples of how I might do this. I immediately saw what she was saying and realized how my overuse of profanity weakened my writing. In fact, all at once it was quite glaring and obvious to me. So I began the enjoyable process of very careful editing. I paid attention to rhythm and timing, and kept in mind the subtle humor I meant to convey as well.
Unfortunately, I did a reading of this piece far too soon, before I had done adequate trimming. It was the only reading I did while at Goddard that I’d say completely flopped. Not only that, but the glaring faults in my writing came clear to me while I was actually standing there, reading aloud to the audience. I watched in dread, out of the corner of my eye, the faces in the audience fall, and fall, and fall, not just a couple of faces, but what seemed to me like every single face before me.
Oh shit. Shit shit shit shit shit. I let my audience down. I disappointed them. I suck as a writer. I am an amateur, a coward. And so on.
Since then, I’ve been very careful when choosing what to read to an audience. Whether the work contained swear words or not didn’t matter so much as whether the work was adequately polished. I vowed that I would never, ever suck in front of an audience again. I decided that if I were to present an unpolished work, that is, a draft, it had to be presented in a certain way otherwise my presentation would flop miserably.
Yes, I have read unpolished works in front of audiences since then. But I learned my lesson. Remember the show “Candid Camera”? This was unpolished work at its finest. Before us, we didn’t see professional actors, but ordinary people with no training whatsoever who didn’t even know they were being filmed. And yet the show was hilarious. It was tastefully done, ironically, by lacking taste. The scenes were filmed as is, and then–hey, listen up, this is important–the film was clipped and edited and introduced with oh-just-so-perfect explanation, not too much and not too little, taking into account the concepts of suspense and anticipation. My guess that after all these decades, the show is still on air and still well-loved by young and old alike.
So I kept this in mind, quite a bit ago, when I read from my work, The It Notebook. This work is in fact what ended up being what I might call a “focused journal.” I’ve never altered any of it from its original, unpolished state. And yet I felt the work had enough merit and was timely enough that I wanted to present it to a live audience.
I picked out excerpts for their emotional intensity. I made sure that there was not only variety but stark contrast between the segments I chose. I kept my my entire reading relatively brief. I put all my heart, guts, and soul into my delivery. What I was presenting was a window, a rare glimpse into a very painful part of my life that had only recently ended, almost too recently. I stood there and wept while I read, not a lot, not in a way that interfered with my reading, not in a way that would make me appear helpless or out of control or someone to be pitied. My tears, which were of course involuntary, represented my candidness and honesty and depth of sharing. And you know something? It worked. It worked damn well.
This reading, done at the now-defunct Mouthful Reading Series, was in a way a closure for me on a chapter of my life, the chapter I think of as the time I spent with It. This time period seems like so, so long ago now, like history I guess. While I was going through it all, I had no clue if I would spend years with It, or if It would go away fairly quickly. In fact, the latter was the case. The act of writingThe It Notebook was what It was all about. The notebook had to be written because it was an intrinsic part of what I was going through. Never mind that while It was happening in my head, there was little else I could do but write.
I wrote. I empowered myself. It was all just so cool, now that I think of it. Looking back, I was beginning to find my Power long, long before it became clear to me that I was anything but powerless. This Power lay within the act of writing. It was always, always there, waiting me to grasp onto, and for the sake of survival, hold deeply within me, with full commitment, ever so close to my heart.
No, I haven’t actually made it yet, but I’ve been thinking about making one for a long time. It’s now in the rough planning stages and I’ve made a couple of decisions about what I want in there and what I don’t want in there.
Why now? I feel that I need to do this very soon and not wait. I find that I am losing my ability to converse out loud with other humans. It’s not because I’m shy or scared having a panic attack or agoraphobic. It’s not because of low IQ and I am not autistic or on that spectrum. I’ve never been diagnosed with a learning disability or communication disability and I’ve heard that everyone has their own “learning style” and “communication style” and that there is nothing inadequate about mine in either respect…or used to be. My hearing is fine so it’s not that, and I don’t fit into any of the dementia-type categories. I haven’t had a stroke (guess that would go under communication disorders) and last but not least, I’m not dead.
This inability to converse properly may be from nutritional deficiency as it influences brain activity.
Let me remind the world (and the mental health establishment) that the above isn’t “fixed” with antipsychotic medication.
My body weight is not “dangerously low” according to any chart. So low body weight is not the cause of this speech problem.
I am devastated over my recent weight gain, by the way. I am suicidal on and off. My level of despair and feelings that my life is not worth living and that my body is ruined like this…it’s just awful. I don’t care for myself, don’t go out anymore, don’t shower, don’t put clothes on, don’t brush my teeth or do anything with my hair.
I dread the day someone tells me how much better I look now. And then what do I do? Fucking murder this person?
Just look at my life. I mean, really look at it. What is this well-meaning person looking at? My fucking weight? Do you even see the tears in my eyes and my expression of desperation, and hear what I am saying?
Can’t murder the person. It would be messy. Guess I’d just walk away.
So anyway, I am so, so isolated right now, completely alone all day long for days and days on end and that is another main reason, I think, why I have become conversationally-challenged.
And another thing is that at this point I lose myself in a lot of gibberish thinking. I was told by a freaking expert that “There is no such thing as psychosis that turns on and off.” Well, fuck you, here I am. Remember It? Last year? Sometimes It was there, and sometimes It wasn’t there, and yes, I was taking antipsychotic medication, and no pill fixed It. Remember The Thing? Sometimes, The Thing was there, and sometimes, The Thing wasn’t there. These were both disabling experiences. I had a bunch of tests such as MRI, EEG…they suspected hormones and then decided maybe not.
At the end of 1996 they told me there was nothing that could be done and that I would have The Thing for the rest of my life. They would teach me to live with disordered thinking the best I could.
I cried. I cried and cried. But you know something? It wasn’t for the reason you think. I cry now when I think of it. All of my treatment was centered at idiot McLean Hospital at the time where many of them were all haughty big-wigs that had a lot of money and not much regard for the chronics. The person who told me this was speaking from his heart. He was a lowly medical student, that is, low on the totem pole, a seeker, perhaps, very much seeped in academia still. He didn’t know what medical field he would end up in, if it would be psychiatry or some other. He didn’t even have to be spending this time with me. He chose to do so out of the goodness of his heart.
I knew he was being straight with me, eye to eye. We were out in the open, in this cafeteria type place, and no one else was around. He told me plainly and simply so that I could understand his reasoning and how he had come to think this. And I’ll tell you why I cried. I’ll tell you exactly why.
It was because someone, finally, believed what I said, treated me like a dignified human being, and took me seriously. I mattered. What I thought and felt mattered. I wasn’t disposable. I wasn’t garbage. I wasn’t a freak. Someone cared about me. Someone wanted me to have a better life.
All the rest of them, by that time, were so damn frustrated that their “treatments” weren’t working, including shock treatments, that they had told me that The Thing was my own fault and that I was “doing it to myself.” Yep. They couldn’t fix it so they said I had made myself that way.
They can’t get away with treating cancer this way or there will be a lot of backlash, won’t there? Okay, let me break this down some. They do. I’m going way, way out on a limb maybe. But don’t they blame the victim in a lot of ways? Like, “It’s your own fault for smoking.” Or, “You weren’t responsible with your diabetes care.” Or, “You didn’t exercise.” Or, “You were always overweight.” Or, “You didn’t practice safe sex.”
Or, “You shouldn’t have gone into his apartment.” Or, “It was your choice to hang out with the wrong crowd.”
Judging. Uh huh. It isn’t going to cure anything and it’s not helpful to anyone.
So when my insurance ran out for certain types of care, they suddenly said I didn’t need this care anymore. Makes sense, right?
The only thing my insurance covered was the state hospital. They said I needed the state hospital.
So…square one, square one, square one everywhere you go. This is where I’m at once again.
And my You-Tube. With gibberish threatening to set in and getting worse and worse as time passes, I need to do this soon, because I want to make sense when I speak on camera. I don’t want to be reading from a script because I can just post something here. I want to have notes and I want to have it planned out, of course.
I do not want to talk about the medical definition of anorexia nervosa because you can look that up anywhere on the Web. It’s not helpful and the medical definition of anorexia nervosa is not what it is. Go talk to someone who has it. We know more and can tell you a lot, lot more. Go read a memoir if you don’t have direct access to someone who has it. Talk to me or read my blog.
I don’t want to talk about my weight or past weights. You can find this all over the Internet. I do want to talk about the experience of wanting to be ridiculously thin and what that feels like.
I want to talk about what it feels like to have everyone scared to be around me.
I very much want to talk about all this and what it’s like to experience anorexia nervosa AS A WRITER. BEING A WRITER AND THINKING AS A WRITER.
Because you see You-Tubes of skinny people all over the place, and You-Tubes with shock factors in them, and You-Tubes telling people there is hope, and so on.
Nope, mine will be none of these, just something done from the heart.
I will be seeing Dr. P today. Hopefully, she won’t spend the entire session lecturing me about my weight. I think we have been over that a zillion times. I will start the session by saying, “I have a list,” and hopefully this will start off the session without the lecture!
First of all, I will mention the vertigo I have been experiencing. This is how I will present it to her:
When I wake up, I feel just okay. I’ll tell you about that in a minute. I shower and walk Puzzle. Then, I feel fabulous. My mood is really high. I feel absolutely terrific. I have a smile on my face. I even feel good when I pick up the poops. [I have more to say about this that I’m going to not say here–not about poops but about something else.] Then, I come home and have the first morsel of food of the day. Within ten minutes, I get vertigo. Dr. K has confirmed that this is vertigo by the way I have described it to her. I even feel dizzy while seated.
At this point, my mood rapidly drops. Recently, the vertigo has started to become extremely distracting, and I have started to become mentally confused. Fifty percent of me suspects that the vertigo is a sign of the return of “It,” given that so much of “It” was physical. At this point, my day is ruined. I can’t do anything for at least 2-1/2 hours, often more, waiting for the vertigo to end, and even after that, I feel crappy for hours, usually into the afternoon. Every now and then, the vertigo has lasted all day.
Here’s what I want to say about the bingeing:
I have had maybe three bingeing episodes since I last saw you. These happen two or three nights in a row, then I stop. I’m not talking about two sandwiches. I’m talking massive binges. I do not throw up. I repeat, I do not throw up. The binges have to do with self-destructiveness and sudden dip in mood. As you know, I do not binge voluntarily. They cause really bad edema. I am extremely concerned about the health consequences of these bingeing episodes. My list of physical consequences, in addition to the edema, is something I want to get into with Dr. K, but it’s serious, and I’ve got to stop.
Here’s what I’m going to confess about that Trileptal:
I cut back on the Trileptal back in April. I halved it. This immediately stopped the swaying. I had to do this to enable me to run on the treadmill. As you know, I have been diagnosed with arthritis in my right knee and have been advised to stop running and walking for fitness. The treadmill is a thing of the past. I chose to bring the Trileptal back to its original dose as of nine days ago. The swaying returned. A couple of things about the swaying that might interest you include the fact that if I don’t sleep well, the swaying is worse, and if I take a nap that’s too long and I’m groggy, the swaying is extreme.
She will ask, “How’s your eating?”
I will say, “Good and bad.” Bad, actually. “Mixed.” Of course, my response means nothing.
I don’t know what she will say to that, except, “Your last weight wasn’t good.”
I will probably hang my head. Not so much in shame but in hiding the fact that I am hiding the fact that I am hiding something. Well, I am not hiding but leaving out the facts. I am not ready to tell her. I am not ready to tell any human all the details of my food problems. Maybe, I will write them down and let it all spill out in this Notebook.
The session will end there.
As we speak, I am experiencing the vertigo I experience almost daily. It’s pretty bad at the moment, and has been going on for about an hour and a half. I am sitting here typing at the computer. I am sitting here, discouraged. As usual, except for Puzzle’s walk, it’s not a good morning. I wish there were answers. Maybe Dr. P will have some.
This is a part of The Starvation Transformations: How hunger befriends me, nourishes me, and betrays me, a new section called “The It Notebook Part Two.” It might take me a while to write this entry.
I suffer from vertigo. I get it in the morning most of the time, and I find it crippling. It lasts for a number of hours just about every morning. Every day, I plan to go out, but more often than not the vertigo comes, making going out impossible, so I cancel my plans. Apparently, I get the vertigo whenever I take the first bite of food in the morning. If I don’t eat, I’ll faint. So I eat, get the vertigo, wait until the vertigo goes away, then I may go out, or maybe it’s simply too late, so I stay home. Welcome to my life.
This morning I experienced strange sensations in my body. I don’t know how else to describe it. I was frightened. I didn’t know what to think. I was afraid that I was losing my mind. I was afraid that I was becoming psychotic. I was afraid that I was losing control. More and more I am afraid that It is coming back.
It is a psychosis that takes control of my mind and manifests itself in my body in very distinct ways. One part of It is dizziness very similar to the vertigo that I am experiencing. The vertigo started May 24. Was this the beginning of the return of It?
I am also beginning to notice some confusion along with the vertigo. The vertigo is extremely distracting now. I cannot concentrate. I have started doing things that don’t make sense, like throwing things out that shouldn’t be thrown out. I am putting things in the wrong places. I am noticing some sensations in my lips. When I get It, my lips tingle. The lip tingling has been going on for maybe two weeks. Another similarity is that It was always present in the morning, and as the day went on, It diminished. I had a grand time in the wee hours, knowing that at least for a little while, I was free of It. Welcome, welcome to my life.
I just got over being crippled from a knee injury–an arthritis “flare-up,” actually. I was told to stop running. That alone changed my life. I told myself this morning how happy I was to be able to walk normally again, how happy I am to be able to give Puzzle her full walk.
And then the vertigo starts up. And then the confusion, fear, and strange sensations. Now, it is my mind that is crippled.
It is gone now. I waited, incapacitated, just doing nothing in particular, and after a while I was okay.
Is this the return of It? Is it?
I read these excerpts at one of the Mouthful open mics in Cambridge, MA recently.
I went to see the neurologist today. It was a very interesting experience. I talked his ear off about It. I told him all about It and The Thing, which was the 1996-1997 version of It. Here is my current version of my description of It, that I gave to the doctor:
INFO ABOUT “IT”
I used to call it The Thing when I was 38-39. I am older, and hopefully, wiser. I turned 53 in the hospital. My new name for it is “It.”
This is what happens:
First of all, I get pressure in my head. Kind of a gooey feeling. Not exactly a headache. It is not painful at all. In 1996 and 1997, this feeling ended up lasting for a fair portion of the day. Lately, this has occasionally been the case…or not at all.
Then dizzy spell hits me. It lasts 10 to 15 minutes. Often it is an up and down feeling.
I get tingling around my lips, and occasionally my entire lips and jaw area. Lately, I’ve been getting tingling around my upper arms as well. Once, the tingling was all over my body, and I couldn’t stand up or walk.
Then, confusion. My thoughts are all jumbled. They make no sense to me. Still, I am able to speak and communicate with others, but barely. At this point, I am completely uncertain as to whether I am making any sense at all.
It gets worse. I can no longer speak in sentences and don’t make much sense. It is interesting that I am generally aware of this but can’t control it. It’s like my thoughts aren’t right so I can’t get the right words out. Once, when I was in this state, I was given a PRN, and spilled the water all over myself while trying to drink it.
In the hospital, there were a handful of times when I was completely unable to rise from a seated position off of my bed for extended periods. This has happened a few times since coming home in my desk chair, but not for as lengthy periods, only for about three or four minutes. This was in January.
In 1997, I had a problem I called “torture,” which was a phase of The Thing in which The Thing performed mental torture on me, but I was able to verbally communicate with others. This returned as of 1/30/11.
It is became more and more like a person or being, but this is no longer the case.
Haldol stops this problem in 15-30 minutes, 45 on rare occasions. Now and then, the Haldol doesn’t work. Taking Haldol in the morning will not prevent It.
It lasts 45 minutes to four hours. I get one to three Its a day, sometimes not at all. I generally don’t experience It late at night, and never in the wee hours. It is unpredictable. I never know when I will get It.
I had double vision, vertical diplopia, for a year. But I have had significant vision change and need to see the eye doctor soon (I am overdue) because I can’t see out of my glasses. I saw the eye doctor in December and he said I needed new glasses, but I know there have been more changes since then. He referred me to an eye muscle specialist to see about the double vision. I have not yet made the appointment.
In 1996 and 1997 I had every test in the book done: MRI, EEG, EEG telemetry, even hormone testing, and they found nothing wrong.
While this is going on, I do not feel hunger, nor do I feel the urge to urinate. I am generally unable to eat, but I am able to force myself to drink water.
If I limit my sleep to six hours or less, I do not experience It. If I get six hours and fifteen minutes or more, I get It. This was an amazing discovery. So I learned to control It. I am comfortable sleeping five and a half to six hours a night. Occasionally, I need a nap during the day, and when I do, I sleep for 15 minutes, and then feel rested.
Before I learned to control It, my life was completely unmanageable. Since I discovered the sleep trick, I have been able to manage my life. Unfortunately, I occasionally oversleep.
The doctor asked me many questions, and looked at my EEG findings, which didn’t show much. There were temporal lobe irregularities, which he said were probably unrelated, could be from the medication, and were inconsequential. He doesn’t think It is a seizure. He has no explanation, however, for the consistent numbness in my lips and head pressure and dizziness. He did say, though, that if It was a seizure, Haldol would make it worse, not better.
So that’s where we stand with It. He said it’s a good thing I discovered the “sleep trick” to control It, and that nothing needs to be done because I am improving.
You see, the whole reason I got It in the hospital was because I got eight hours of sleep every night, at least. That explains it completely. I came home and started limiting myself again, and got immediate relief.
Most of the time, I wake up before the alarm rings. Occasionally, I wake up with the alarm. Knowing that I’m doing this to avoid It and improve the quality of my life makes it easier to get out of bed in the morning.
You may have noticed that I ended the It Notebook a while back. Or maybe you didn’t. I still get experience It sometimes. But the notebook is done with. Some of the notebook I haven’t copied over and published here yet. This I will do, probably in two entries–one for the remainder of the McLean papers, which are shorter and won’t take much effort to copy over onto a Word file and paste onto an entry–and the other for the entries I did at the community hospital I was in (I choose not to name the hospital) most of which were originally hand written to begin with because my Internet access was limited to maybe ten minutes to a half hour (a full hour if I was lucky) per day, or not at all. I did quite a bit of writing at the community hospital as this was the way that I healed myself. In fact, it was through writing that I was able to figure it all out, and to realize that I needed to move on, from working on suicidality to working on other issues: depression and sadness, It, and my eating disorder. And a few entries ago, I realized that it was a good time to end the It Notebook. As you can tell, I’ve still been writing here, quite a bit, but I’ve focused mainly on my eating disorder and not on It or on sadness. I’m not saying that this won’t change. After all, I’m seeing the neurologist next week, and I’ll be speaking with him quite a bit about It, and I’ll have a lot to say about It in here following that appointment! I haven’t a clue what he’ll say about It. No clue whatsoever. Is It a seizure? Is It a weird depression? Is It psychosis? Am I just making up It for attention? Am I just making up It so that I’ll have something interesting to write about in the It Notebook?
There was a another secret catalyst, though, that triggered me to end the It Notebook. I will share this with you in the coming weeks….
At some point, I will explain to you that the It Notebook is about something else besides what you think it’s about….Stay tuned….Actually, I only came to realize this recently….
I plan to write an Introduction to the It Notebook, as well as an Epilogue, or Afterward (I don’t know what I’ll choose to call it) which I will not share here. Although I started the It Notebook January 28th, four days after I left McLean Hospital, I choose to include the McLean Papers, because they are part of my history. I plan to include in the It Notebook my account of the Winter Classic 5k race I ran on December 19th, which precedes my relapse by two days, which will be the Prologue. I also will include some very brief journal entries that fill in the blank spaces. While I was writing the It Notebook, I had to transfer it from a 1″ notebook to a 1-1/2 inch notebook. That’s how many papers are in it!
My last entry was dated 3/28: What I Know Is True. Of course, I have written plenty since the end of the Notebook in this blog! So I actually kept the Notebook for two months. I printed out every entry. I shared parts of some of the entries with my T. She has never held the Notebook in her hands, though.
You, readers, have held the Notebook, in a way, in your hands. And meanwhile, I have continued to write here, and will continue, your hand in mine.
Well, not really. That just sounded good. My hands are both busy typing.
Today is Monday. I don’t have a record of this, but I think it has been just under a week since It has bothered me. I experienced It in the library. I probably shouldn’t have gone to the library because I was dealing with It, but I went, anyway, armed with a bottle of Haldol. I was uncertain as to whether what I was experiencing was actually It. But as soon as I was certain, I took a Haldol. When the medicine kicked in, It was gone. It has not bothered me since. It was a daily occurrence while I was in the hospital, often severe. It is possible that this may be due to the fact that I only allow myself maybe six hours of sleep at most per night. Less sleep means less likely to get It. If I get a full eight hours, I yawn all day, and am sleepy or groggy even. And I think getting say seven and a half hours will put me at risk for getting It.
Today is Monday, and I’m working on making my life with It a thing of the past. Tomorrow I have an EEG, which stands for electroencephalogram. It’s a sleep-deprived test. I have to stay up all night before the test. They want to see what my brain is like in a very sleep-deprived state. They are going to put little sensors on my head and test electrical signals. The test will take about an hour. It should be interesting if It shows up on the test. Something tells me that this should have been done months ago.
Today is Monday. My eating has sucked for months. I am coming to realize, more and more, that I have a long, long way to go with my eating disorder. Before It began, I thought I was doing okay with eating. Now, I realize just how much work I have to do.
For a couple of months, It overshadowed my eating issues. It became the focus. I could not manage my daily life. I could not think straight. I didn’t shower and didn’t know how to hold a toothbrush properly. I couldn’t dress myself. I had to wait for It to go away before walking the dog, and this sometimes took hours. Slowly, I put my life back together. Now, I have to deal with what remains.
But eating and weight are just on the surface. There is a lot under there. Yes, I don’t eat right and don’t take good care of my body. Granted, I now brush my teeth a lot but that’s the extent of it.
Somewhere in there I made a choice to live. Maybe it was several times. Maybe one of those times was when the cops came and I went with them willingly. Maybe another time was when, rather than begging people to set me free, I begged not one person, but a number of people, to stop me from doing what my thoughts were telling me to do.
So you would think that now, I would make that choice again, fully. But taking care of myself means so much. Like I said, there’s a lot under there. I’ve gotten the daily tasks down that were tough because of It. But now, I am faced with more long-term challenges.
I have not eaten normally since two days after the race. I have mostly restricted. I have lost weight. I have done stupid things to my body. I have not loved my body. I have not cared for my body. I have not treated my body with respect. This has been since December 21st. I need to wise up. I can no longer use It as an excuse. I can no longer use depression as an excuse, because I am getting over my depression. I may have funky teeth, but there are plenty of foods that I can eat. So I have nothing to blame now except what’s raw and inside me: my eating disorder, and it’s my eating disorder that I now have to face.
We’ll see how it goes.
I wrote this by hand on March 13, 2011, and am copying it over now. I think the neurologist will find this incident very interesting and relevant, so I will mention this to him when I see him.
My experience of It this morning 3/13/2011 Sunday
I am so shook up. My experience of It a while ago was so intense, so Other….
It started with the usual numbness in my lips and up-and-down dizziness. Lately, I have had an increase in vertical diplopia while experiencing It. (This diplopia began in April. The diplopia went away in December when I became ill but returned recently, now chiefly during It and them continuing for about an hour after.) My thoughts were wrong, and I had some incidences of intrusive thoughts. Au usual, I was fully aware that this was happening. At the time, I thought that It would pass; it usually does.
Suddenly, It traveled from my lips to my shoulders to my arms, down my chest, down my legs and into my feet. The numbiness was no longer in my lips, but all over my body. I felt tingly all over, like teensy needles. Alarmed, I stood and tried to walk to the door. I don’t remember where I was planning to go at the moment. I was unable to walk because I had barely any feeling in my feet and ankles, an no feeling whatsoever in my toes to my recollection. I sat and waited, aware that I needed assistance from staff.
Finally, my roommate came into the room. I asked her to get staff. The staff took a long, long time to come. One staff came and took my blood pressure: normal. I waited some more. A staff came. He was one of the ones that I do not like or trust. I couldn’t tell him a thing, so I asked for my nurse. I trust her. I waited. And waited. The doctor came, whom I no longer trusted. I could not tell her t thing, but she did relay to the nurse that I needed Haldol. Bingo! This guaranteed that the nurse would come. But I ended up waiting for what seemed like forever.
The nurse brought the Haldol. By then, It had begun to fade somewhat. I knew I was on the mend, and that the Haldol would further improve the situation.
I am writing all this down around an hour after I took the Haldol. It hasn’t completely left me yet. But I needed to record all this immediately, while the experience was fresh in my mind.
Two days from now, that is, Tuesday the 15th, I am scheduled to see the neurologist at McLean. I need to reschedule, because I am here. It is obvious to me that I need to have this appointment. Something very weird is going on, very, very weird.