I was rereading some of my old blog entries, including those connected to the Great Headache Crisis, and thinking about my life and my state of health and why does this always happen to me? It’s become one of my personal mottos. I don’t mean that bad, tragic things always happen to me — though there have been more than enough of those — but that a lot of unusual things happen to me. I don’t know how much of the cause is my own personality and how much of it is just fate.
I seem to attract crazy people and I say I find them interesting. Yet I know several interesting, sane people. It’s just that the fact is most people I meet bore me and, though I don’t dislike them, I don’t want to come outside of my own personal reverie to connect with them. So when I find a person who is “interesting” it is like finding a rare and valuable object and I throw myself into the relationship.
Sometimes it becomes too much for the other person — and sometimes they are too much for themselves already. Many of my friends, online and off, are slightly dangerous to know. I don’t mean physically dangerous — none of them are violent — nor do I mean they would try to take advantage of me. I mean they are more likely than the average friend to turn psychotic all the sudden and rip my heart out. It’s happened twice times and each time, particularly the first time, it was devastating to me. I mean, like a bomb blast. I don’t want to go into details because I don’t want to defame anyone’s personal reputation.
Suffice it to say that I’m a wide-open target and very easily hurt. People whom I meet tend to be turned off by me than otherwise, and I usually don’t know why. And I make an easy victim when someone wants to lash out. That’s part of the reason how I was my brother Colin’s verbal punching bag for a quarter-century. (My therapists have suggested I actually have some form of PTSD when it comes to him, seeing as how I can’t stand to look at him and even being in the same room with him, even if he is not talking to me, is enough to seriously unnerve me. Michael can always tell when I had to be around Colin, because afterwards my behavior for the rest of the day is kind of shot.)
Now, I’m having to deal with another bully in the form of Michael’s third roommate, J.J., who is roommate M.F.’s boyfriend. (M.F. is a guy, incidentally.) When J.J. is angry, he can’t yell at Michael because Michael owns the house and there’s no contract and he could throw any of us, or all of us, out on a whim. J.J. can’t yell at M.F. because M.F. yells back and it causes discord in their relationship, and increases the chance of J.J. getting kicked out, since Michael doesn’t particularly care for him and only lets him stay out of loyalty to M.F., who is his (Michael’s) best friend. So J.J. yells at me. I find myself getting screamed at for offenses such as leaving a dirty plate which I intend to reuse on the kitchen table for two seconds while I throw away a pop can, or “leaving all your [stuff] out in the living room like a slob” when said stuff consists solely of a watch, a pair of sunglasses and a set of keys. J.J. yells at me because he can. I don’t yell back, and I have no power over him.
Of course, a lot of my propensity to attract bullies is my own fault. I cannot stand up for myself. I am constitutionally incapable of hitting anyone and can’t bring myself to hurt anyone’s feelings verbally either. When screamed at enough, I can be goaded into screaming back, but that requires a lot of provocation. I have no idea how to respond to deliberate acts of cruelty. Usually I don’t react to the person at all, just stare at them in silence. I try to get away from them if I can. My mother and several of my siblings bullied me at home (Colin’s behavior towards me went far beyond that) and when I started school it just got worse. Bullies were a large part of the reason I left school at the end of eighth grade — one of the best decisions in my life, because it lead me to OSU’s campus and to meeting Michael.
Anyway. All of this wasn’t what I meant to write about.
In the past several years I’ve had to deal with two serious health problems, both of which caused great misery and nearly killed me: the depression and the Great Headache Crisis.
The depression I was quite used to; I’ve had it since I was at LEAST eleven years old and probably it goes back longer than that. Once, in third grade, when I was eight, there was a time period of weeks or perhaps a month or two — I’m not sure how long, but too long — where all I did was sleep. I would come home from school, collapse in my parents’ bed (I liked it cause it was a waterbed) and sleep till ten, when they’d wake me up and lead me to my own bed. Then Dad would get me up at seven and I would go to school and spend the whole day yawning and drowsing at my desk, then go home and the cycle would repeat itself. I don’t remember hurting or having a fever or anything like that, I was just very, very tired. After I told the teacher I wasn’t staying up too late and was, in fact, sleeping all the time at home too, she sent a note home. As far as I can remember, though, my parents didn’t think much of it all and nothing was done.
Looking back, their irresponsibility is shocking to me. Healthy eight-year-olds do not suddenly start sleeping all day, every day. They should have taken me to the doctor and gotten me tested for meningitis or leukemia or whatever other illnesses cause those symptoms. But from hindsight, I think it was “just” depression.
My meltdowns at school started in, I think, fifth grade. By the time I was in eleven and in sixth grade, the people at school were talking about “chemical imbalance.” I didn’t know what that was, but even I knew there was something wrong with me. I felt this sense of impending doom, a feeling that the problem would get worse, like a brain tumor or something. (I don’t mean I actually thought I had a tumor — I didn’t — but I imagined my mysterious problem growing like one.) As before, my parents brushed aside the school staff’s concerns and just said I had these breakdowns because I was sensitive and hyper-intelligent and stuff. It just got worse though, as I thought, and I ended up having to leave school in the eighth grade. How much of my problems were caused by depression and how much by my undiagnosed Asperger’s Syndrome is a matter of speculation.
Though I flirted with counseling and later meds throughout adolescence and at college in Arkansas, I didn’t get proper attention and treatment until I was 22 and had a nervous breakdown. It was absolutely spectacular and, looking back at my way of thinking at the time, the way I was calmly and rationally planning to do the most IRrational things, it seems so utterly disconnected from everything else. I remember stating quite calmly that I was dying, asking my mother to take care of my pet rats because I was going to die and telling one social worker that I needed to “go home and finish this.”
During one of my daily evaluations with the doctor, I earnestly requested that he release me from the hospital so I could go home and die. I argued that it was his job to ease people’s suffering, and right now he was only prolonging mine, but he could eliminate it entirely just by signing a release paper. I assured him that his actions didn’t have to extend any further than that — the means I could take of for myself.
He did not dignify that with a response — only an incredulous look. Later on, after I got out, I put in a records request and got his notes and deciphered them, and for that day he wrote I was exhibiting remarkably poor judgment and insight. He became my regular psychiatrist and I know him for a direct, brutally honest, no-nonsense sort of man. We’ve butted heads from time to time, as strong-willed and intelligent adults tend to do, but I’ve learned to trust him.
In the hospital, as I was walking around in a fog of thanatos, there was one patient who was throwing a tantrum and yelling. He was actually the only patient there who aroused even slight interest in me, perhaps because he was the only one who was visibly crazy. I told him to show a little more respect for a dying woman.
For days, I could not lift my head when I walked. I could not look at anyone’s face. I could not speak louder than a whisper.
And then…it was over. Just like that. I came out of that madness like Jonah from the belly of the whale. I remember blinking in confusion and wondering what on earth had happened, because it all seemed like a dream to me. I could hardly believe the things I said and thought and done.
So I was formally diagnosed with Asperger’s (something that, by then, me and my social circle already knew I had) and, of course, severe depression. As what typically happens, it took forever to get my medicine right and there were several bumps on the road, some big, some small. Even after all seemed well, I had regular black periods (perhaps once a month or so) lasting anywhere from a few hours to a week. I just thought they were something I was going to be stuck with forever, and learned how to ride them out, but they were bad. Last year when I got diagnosed with mild rapid-cycling bipolar disorder and started taking Depakote, that the black periods went away.
I’m doing as well now as I have ever done. I still see a therapist regularly (as I have over most of the last four years) and I have a social worker. My biggest problem, now that the depression has been pretty much beaten into a coma, is dealing with my Asperger’s. I don’t buy into all that garbage about “Asperger’s is a wonderful gift, look at all the brilliant people who had it.” To begin with, retrospective diagnoses of people who lived and died hundreds of years ago are not going to be terribly accurate. And more to the point, Asperger’s Syndrome is an enormous pain in the butt and a great burden to myself and my family and my friends and Michael.
I haven’t been able to maintain even a semi-regular sleep schedule since I was twelve. No matter how great my affection for a person, I cannot connect to anyone — Michael says the computer is the only thing in the world that I really want to be around, and that MPs and figures from Holocaust are the only people who are real to me — and I unintentionally anger and annoy people everywhere I go. I have no conversational skills or social skills. I have plenty of theoretical knowledge on a wide range of subjects but no way to apply it. It’s like I know everything about violins, their history, how they’re made, the greatest violin makers, the greatest violinists, I can take a violin apart and put it together again…but I can’t play a single note. (I don’t, in fact, know squat about violins, but you get my point.)
I have incredible sensitivity to noise, touch and taste — particularly noise. I can hear things no one else can hear, and something like a buzzing fluorescent light might send me into a fit that is both agonizing and embarrassing. During these fits I may hit walls or tables or myself, moan and grimace, cover my ears, repeat the same thing like “make it stop” over and over, hyperventilate, rock back and forth, throw myself or objects against walls, and cry, among other behaviors. Apparently it really makes people freak out to see see all this, especially if they don’t know me and don’t know what’s going on.
Usually, if I can get away from whatever overstimulated me and caused the fit, I can calm down and reorient myself quickly. But there was this one time when I got a call from Michael with upsetting news and started having a fit. And I was strapped in the backseat of a car in the middle of an eleven-hour trip, so I couldn’t do the things I normally do to let the tension out. (In retrospect, I should have asked to stop the car and let me out to decompress.) I was reduced to pounding my hands against my thighs, over and over, and over, moaning and doing such rocking as I was able to do with the seat belt on. This lasted for well over an hour before I finally wore myself out. By the time it was done, the sides of both my hands (not the thumb side, the other side) were black from bruising.
Now, why would anyone want to be saddled with a condition that makes you do things like THAT?
I don’t know how different I would be today if I’d been diagnosed and gotten treatment back when I was little. I mean, there is stuff they can do for autistic adults (Asperger’s is a form of autism) but early intervention is so much more effective. Of course, back in 1985 when I was born, hardly anyone had heard of autism or Asperger’s, and I doubt there was much available in the Middle Of Nowhere that constitutes northwest Ohio. But even if there had been some way to help me, because of the incidents I recounted above, I doubt my parents would have taken advantage of it.
They think, now, that my father also has Asperger’s. He’s a lot higher functioning than me — no fits. But in some ways he’s even more socially clueless than I am. Both of my parents failed to protect me from my brother’s abuse and I resent them for it. But I hold Dad less responsible than Mom because Dad really doesn’t get it. He doesn’t understand the concept of hurting a person’s feelings with words. Time and time again I have tried to explain to him the damage Colin did to me and he has asked, in puzzlement, “But you know the things he said weren’t true. You’re not stupid or ugly. Your mother and I love you very much and we would never have sent you to an orphanage. So why would his saying those things upset you?” He did not protect me because, in his mind, there was nothing to protect me from.
And then there’s the Great Headache Crisis. Though not in and of itself dangerous, it nearly killed me too. The Cleveland Clinic’s I-MATCH program not only gave me my life back, but also saved it, because I am convinced that, if I had remained in that condition for much longer, I would eventually have died either accidentally from an overdose, or on purpose, not because of depression but because I couldn’t stand the pain anymore.
My depression was, more or less, under control throughout the GHC, though some of it may have been that I was in too much pain to feel depressed. There were times when it seemed the one could not be separated from the other — that is, I was so despondent over my condition that it was remarkably like a bout of depression. I said, repeatedly, that if I had to choose one or the other I would take the headaches, but as the GHC wore on I got more unsure on that point.
Back last November I ODed on prescription painkillers and almost died. This was the time when I cut my hand; you can re-read the entry and see the gross pictures if you like. You’ll notice that I told a tiny little white lie, claiming it was a drug interaction and not an overdose. I just didn’t feel comfortable at the time writing that I had overdosed, but indeed I had. I was all alone, house-sitting for my mother who was in Mexico, and my head hurt. All I wanted was for the pain stop. I would have done anything to make it stop. And I did.
The last thing I remember is returning to my laptop after taking the pills. Then I woke up the next afternoon and I’d wet the bed and, as I said in my entry, I couldn’t walk two steps without falling flat on my face — which I did several times. My mind worked, mostly, and I remembered I had an appointment to see my psychiatrist and clearly I was going to have to cancel it because I was in no condition to drive and probably wouldn’t have made it out to the car even. It took several tries to dial the phone number to his office correctly. I didn’t tell them the truth of the situation — saying “I can’t come to my shrink appointment because I took way too many painkillers last night and now I’m stumbling around like a drunk” would have resulted in the police knocking on my door. I said I was feeling a bit under the weather. I think my voice must have been slurry or something, because they were like “are you okay, do you need an ambulance” and whatnot. I said no, and they said, uncertainly, “well, call back if you feel worse.”
In retrospect, yes, I did need an ambulance. I considered it for about five seconds and decided against it because I didn’t want my stomach pumped, or awkward questions being asked. And then I cut my hand and bled all over the place, as I recounted before, and then went back to bed, and then the remodeling guy came and did what he could for the cut out of his first-aid kit. I went back to bed and slept for more than 24 hours, and when I woke up I felt much better, though still kind of thick-headed. I unwrapped my hand and saw, for the first time, how bad the cut was, and went to the urgent care clinic to get it stitched up.
Unfortunately I made a terrible mistake when I told the truth to the nurse about what happened. (I really, really wish, even now, that I’d just said I was drunk or something.) She totally freaked out and told me if I didn’t summon a relative to take me to the hospital, she was going to have the police do it for me. I remember she was like, “You seem kind of agitated, maybe you’re still suffering from the drug effects.” Which I was, but that wasn’t why I was agitated. I was like, “I am agitated because you won’t sew my hand up. Why won’t you do it? That’s all I want you to do.” She refused to do it, or to let me drive myself to the hospital, because she suspected, quite correctly, that I would have just gone home.
The funny thing is, she would not admit “I think you are crazy” or “I think you tried to kill yourself.” She would not admit that she wanted me to have a psych eval and focused entirely on the cut and the overdose, going on about toxicity and liver failure (though I pointed out I should have been jaundiced by now). It was ridiculous. When she called the hospital to tell them I was coming she described it as a suicide attempt and, I don’t know if this was a misunderstanding or what, but somehow the hospital was under the impression I’d taken almost six times more pills than I actually had. She behaved in a completely unprofessional manner (Dr. Easley agreed) and I later called the clinic to complain.
I don’t think she meant any harm. I think she panicked. But nurses do not have the luxury of panicking.
So there was Dad taking me to the hospital, and four hours of waiting and annoyance. They did the psych eval and I was extremely irritated by then and kept explaining, “I did not want to die. I wanted the pain to stop. I’m not depressed, I’m in pain. There’s a difference.” Then the nurse who did the psych eval took it up to the psychiatrist on duty — who happened to be my regular psychiatrist, who really let me have it when I went to see him next.
And another nurse told my confidential medical information to Dad, info I didn’t want him to have because I knew he would get mad at me. And he did. I threw a bit of a hissy fit when I found out and was ranting about the HIPAA Act in front of other hospital staff members (the violator was not present) but I never filed a report. It wasn’t worth it to do so. She was genuinely trying to help, and she was pregnant and I would not be responsible for a pregnant woman losing her job and possibly her nursing license.
Then, finally, I got my hand sewn up (it took like five minutes) and got sent home with a script for antibiotics, too agitated to sleep. I washed my pajamas and the sheets which I had urinated/bled on and then screamed in frustration and rage as I attempted to put the sheets back on the bed. It’s hard enough doing it with two hands; try doing it with just one. I didn’t fall asleep till like four in the morning.
I made an appointment to see Dr. Easley in order to give him my side of the story before he got the records from the hospital. When I told him what I had taken he was all like, “Jee-zus. Why are you still alive?” He asked if I might over-medicate myself in the future and I could not promise I would not. In fact, I pretty much guaranteed I would. The pain was just too great. And he was like, “You could die” and I said, “I don’t care.” He said, “Well, that means to me that you are suicidal.” I said, “No, not really. I just want the headache to be gone. One of us has got to go.” After that he was afraid to prescribe me anything. He really didn’t know what to do. Neither did I.
It was four days before the overdose wore off and I felt entirely all right again in my head. And it took awhile for the enormity of what happened to sink in. Some time later I was on my computer and opened up a writing project I had been working on and hadn’t touched since the night I had ODed. And I discovered I’d apparently tried to work on it after I took the pills: there were pages and pages of complete gibberish. I couldn’t make any sense of it and wound up having to rewrite it all. There was no punctuation, and mostly no words, and sometimes whole paragraphs of the same character over and over. It looks like I was passing in and out of consciousness in front of the keyboard. And I have no memory of any of this. Complete amnesia. That scared me.
In the final analysis, what bothered me most was not cutting my hand (which was gruesome and painful, but not a serious injury) or the four-hour hospital ER nightmare (very annoying, but it was over now) or various people getting mad at me for being stupid (also annoying but temporary) or even the possibility that I could have died that night (what better way to die than in your sleep from an overdose of opiates?) What bothered me most was the idea that I could have died, and for the rest of their lives my family and friends would have wondered whether or not I did it on purpose. There would have been evidence to the contrary (mainly that I didn’t take the whole bottle, not even half) and they would most likely have told themselves I probably had not, but there would have always been that doubt. A terrible thing to inflict on those who love you.
The scar turned out not to be as large or as prominent as I thought it would be. In fact it’s barely visible; people don’t notice it unless I show it to them. But I look at it often and remember how I got it.
The other near-fatal headache experience I wanted to write here about happened in the first few days of January. I had had what I called “suicide headaches” because they made me feel suicidal. This was the very worst of the worst. I had been in severe pain for several days by the time I woke up on January 4. Now, usually the Headache wouldn’t be there at all right after I woke up, and wouldn’t make itself known for at least an hour, then grow steadily worse as the day went on. Well, this time it started, fiercely, within ten minutes of my waking up at 5:00 a.m. In fact, I had even dreamed about the pain, something that only ever happened that one time.
The pain was the worst I’d ever felt during the entire 15-month Headache Crisis. It’s difficult to describe. I can’t use the typical words like “burning” or “throbbing” or “pressing.” There was no particular spot where it hurt more than anywhere else. All I can say that I had this mental image of a rotten apple, brown and soft and mushy, with the skin wrinkled and turning black and starting to slough off altogether. I had no meds at all — I’d had a Dilaudid script but had run out of it. I spent some time pacing around the living room, trying to keep my steps quiet so as not to wake the boys, trying not to scream. I made attempts to focus on something else, like a book or my computer. I was usually fairly successful at distracting myself from the pain, but not this time.
I was seriously afraid I was going to hurt myself. I kept thinking about kitchen knives and the tie on Michael’s bathrobe and stuff. I did not really want this to happen but it seemed like it might anyway, an involuntary reflex action, the way you yelp and jerk your hand when you accidentally touch a hot stove. During that time period, in Michael’s living room at 5:00 a.m., I was once again willing to do ANYTHING to make it stop. But there was nothing to do.
I had to do something other than pace around my boyfriend’s living room, but my options were limited. I didn’t want to wake the boys. I had no faith in hospitals anymore. What I needed was morphine, and I knew they wouldn’t give me that. But I couldn’t be alone. So I threw my stuff in my car and drove for an hour and a half to Dad’s apartment. He had no reaction to my appearance on his doorstep so early in the morning. I explained the purpose of my visit and we sat around for a few hours talking about any random thing, just to get my mind off my head that was splitting apart. I remember we talked about the dissolution of Czechoslovakia in 1993. I found I could distract myself if I had another person to converse with. It never gets any less but it becomes bearable that way. I remember actually laughing as I told Dad about some funny website I’d visited, laughing even through all that pain.
The whole time I kept saying that I wanted to die, that I could not take it anymore, I wanted to be dead, etc. Dad was like, “Do you need to go to the psych clinic?” And I said, “No, they can’t do anything for me.” And he said, “You don’t sound depressed” and I said “I’m not.”
Eventually, once the offices all opened up, I called Dr. Easley. Dad had an appointment with his cardiologist in Dr. Easley’s building that morning. I rode along with him and went to Dr. Easley’s office while Dad was seeing the cardio. I didn’t actually see him, just talked to a nurse and tried to explain what I was going through, which was never easy. I was desperately hoping for a shot of something. Dr. Easley agreed to refill my Dilaudid script but would prescribe nothing else. I think he wouldn’t have even done that if he hadn’t known Dad was with me, on account of being afraid I’d overuse it. (He also referred me to a pain specialist, but it turned out the guy didn’t treat headaches.)
In the hallway I called my friend Wendy the Minister and talked to her and told her I was in so much pain that I wanted to die, right now, right here. She said, “You don’t want to die, you want the pain to stop.” Dad and I went to the pharmacy to get it and right there in front of the counter I immediately took the maximum allowable dose, 8 mg, which like the equivalent of a horse tranquilizer. Had my father not been sitting right next to me I think I would have eaten the entire bottle, bought some vodka, downed as much as I could, sat down in some quiet place and never gotten up again. I was just so miserable.
After that Dad drove to Mom’s house with me. He was going to go there anyway to drop off his recycles (his apartment building doesn’t recycle, so he gives his recycles to her and she gives her garbage to him so he can dispose of it free in the apartment dumpster). Mom was of course surprised to see me with him. When we explained why I was there and what had happened thus far she started yelling at me. I was glad to get out of there. Dad took me to lunch, then to my chiropractor appointment.
With the Dilaudid at first, nothing happened and I thought it was going to be a hopeless failure like everything else. But after like, over an hour, it started to sort of work. It cut the pain, perhaps, in half. Which meant I was still in great pain, but I could stand it and I no longer entertained thoughts of death. I remained in that state for the rest of the day. Dad and I returned to his apartment, he put oil in my car and I drove back to Fort Wayne.
The pain level held for the next several days — that is, it didn’t get worse and didn’t get better — but I felt utterly hopeless. The only thing that was stopping me from completely checking out was my responsibilities to my family and friends, knowing that they would be shattered by my death. I was convinced I would be in pain like this for the rest of my life and it would never improve. I wrote to a friend:
I am seriously worried that one of these days, if something doesn’t change, I’m going to just absolutely go out of my mind from this pain and drive into a building or something… I am NOT depressed in the psychiatric sense, I don’t believe — when my head doesn’t hurt I’m cheerful enough — but the end result is pretty much the same… The only good thing I can say is that I handled this pain crisis much better than I did November’s.
I am convinced that, had I not gone into the I-Match program around six weeks after that day, incidents like that one and the one in November would have happened again, and continued to happen, until something broke. When I told Dr. Easley that one of us would have to go, I meant it.
I try to use the DHE, the magic bullet that stops my headache when nothing else will, very sparingly. I still have a Dilaudid script. I actually had a headache tonight and took 4mg, which took care of it just fine.
A lot of people have told me how “brave” I am for going through those horrible months of suffering. I don’t see what’s so brave about it. It’s not like I had a choice. I complained bitterly the entire time, just ask anyone. And I don’t think I learned anything or gained any particular insight from the suffering. The depression, perhaps because I had it for so long, I incorporated into my identity. I can’t really imagine myself without it. But the Great Headache Crisis was just something else, an unpleasantness I don’t think about too much anymore.
Anyway. I’ve gone on way too long about this. I’m pretty sure this is the longest post I’ve ever done.