March 16, 2013

Page Seven


I can’t claim to have been a child endowed with forbearance. quite the opposite. when I think of the many children who are born with much more terrible illnesses than mine, and the myriad medical mayhem they go through, and that so many of them do this with a profound good grace, I’m embarrassed. I did not bear my childhood illness and the medical tinkering that went with it with such a grace. I bore it with sheer hostility, almost never expressed, held tightly inside most of the time. there were rare occasions when it erupted. I don’t recall ever throwing a fit about anything as a little child except having to go to the hospital (maybe I had fits about other things too, but if so, they haven’t stuck in the memory). sometimes if I heard my parents talking about going to the emergency room, I’d hide far back under my bed, screaming No, No! when my father tried to drag me out. at least once he got so worn out that he went away and whispered with my mother, came back into my room and said we were going to Grammy’s house. I was skeptical. really? I said. ya, come on, everybody’s ready to get in the car. a child, less than five, maybe less than four. a child who liked going to Grammy’s, my skepticism dissolved and I went. but of course we didn’t go to Grammy’s, we went to the emergency room. the hated oxygen tank, the hated shot of adrenaline. do I forgive my father that lie? do I forgive him other lies he told me in childhood because of my illnesses? I think, if I’m truthful (which I prefer to be), I have to say that I don’t forgive him, but I do, as an adult, understand him. as a very severe asthmatic, it was a fact that the more emotionally upset I became, the worse became the attack. my screaming and yelling that I didn’t want doctors only aggravated the cyanosis, the wheezing, all of it. my father worked for a living after all, and got tired. I can see that both because of my increasing blueness and his own weariness with this weeping child he feared might die in the next hour if he didn’t get her on a tank, that he would resort to lies. the path of least resistance (and least truth) is a popular one to take in my family, the whole extended family, and my father was shaped, at least in part, by such people.

back in the fifties they didn’t give sick children their own oxygen machines for the home. maybe they weren’t even invented. every time the stuff was needed, either the firemen had to come to the house with their tanks, or we had to go to the ER to use theirs. sometimes both things happened in the same night. I hated hated hated it. it was bad enough when a police cruiser came to the house to cart me off to the hospital, as sometimes happened — the embarrassment to me that the neighbors saw the cops coming to our house, and knew it was because of me, was serious. but far worse was the fire engine. this happened at least once, and I remember it even today with shame. the fireman who was closest to our house when my parents called, and had a tank with him, had just come from a kitchen fire or something and was riding around in the big truck. to save time, he came straight over in the screaming, howling red fire engine to give me breath. I was absolutely mortified, and remained ashamed of that night whenever I strolled around our little neighborhood for many months to come (on those occasions when I was allowed to walk).

the first ten years of my life left me not with gratitude toward the tanks, tents and needles that kept me alive, or toward all of the people who wielded those things. nor did it leave me with any good grace. it left me with a loathing of all things medical: buildings, offices, people, tests,  gadgets. I can’t always hide this contempt when I have to deal with a doctor, nurse, phlebotomist, whatever. if my insurance would pay for such things, I would use ayurveda and accupressue, hypnosis and homeopathy, etc. yet another instance where some money would give me some control over my own life. some money would lead me to keep western medicine miles away from me ninety-nine percent of the time.

I am not one of those good, longsuffering survivors of childhood illness. for many reasons, I wish I were, but, like it or not, I’m made differently than that.


read…    mugsy’s book...     kaikenlainen (a brother)

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July 29, 2010

Page Six

Yup, more sickness. We’re not past that yet. And I might as well say right now that we’re not going to get past it. It will change its manifestations over the years, but that’s the best you can hope for. I sit here typing, 57 years old, and I am still sick from my immune system on a daily basis. There ain’t no getting past it.

So it’s 1957, and I’m four years old. There was a big flu epidemic in 1957, but I found that out on public radio when I was something like 52. The lightbulb went on in my head: so that’s why I got pneumonia. I got the flu first. But more lights are going on: yeah, my mother did say something once or twice over the years about an epidemic and flu, but I’ve apparently been blocking those little notes for a very long time. When I heard all this stuff on public radio about the epidemic, I thought I was hearing it for the first time, but I wasn’t.  

I get the flu, and it develops into quite a champion pneumonia: viral and in both lungs, all lobes, etc. The total hospital stay was three weeks, two in, one back home, then another week in the clink. Yes, I was as beleaguered as if I’d been sent to jail. After all, by the time I was four I already detested doctors, nurses, and all things medical. These were the things that were going to kill me, in my child’s mind. All the anger over the illnesses got focussed on the medical machine that was trying to keep me alive, not on my immune system itself.

How many times I was moved around in these weeks is rather nebulous,  how many different rooms I was in, how many kids I met, etc. So the memories that do stand out vividly are probably not in chronological order, and I don’t attempt to give them back that way. These are just very distinct flashes about the pneumonia experience.

For a while I’m in a two-bedder. There’s a boy in the bed next to me, and they come to do things to him, but they don’t draw the curtain quite all the way around his bed. They take blood out of his arm, and I have no memory of ever having seen this before. It completely freaks me out. Surely I must have had blood of my own taken by this time in my life, but I have no recall of it. I see them do it to this boy, and I’m wigged. I dream about it, I worry about them coming to do it to him again, I worry they’ll do it to me.  But nobody knows I’m in this welter of anxiety because I’m not the kind of kid to say it or to show it. I act out over some things, but the rest I keep locked up. I don’t tell anyone the way I’m suffering over this blood thing. For the first time ever, I feel grateful for my oxygen tent. It’s just a tent. It’s stupid and embarrassing and I hate it, but at least nobody’s sucking the blood out of my arm.

During my stay, some wealthy couple donated a brand-new TV to the children’s ward of Beverly hospital. All of us who could walk were brought to the playroom to pose in front of the TV for a newspaper photgrapher. Actually, I think I was wheeled to the playroom in a chair, because I was under strict orders not to walk. I broke this stricture every chance I got. Anyhow later, after I was at home again, my parents presented to me the newspaper photo. When I got older, they gave it to me to keep. I still had it when I was in my twenties, but since then my mother has bit by bit chucked out a lot of my things, and that picture may have been among them.

I always maintained as a child that I was NOT as sick as the doctors were always saying, and for years I used that picture to back up my claims. See, I would say, pointing to myself in the photo, I don’t look as sick as those other kids. It wasn’t until I was in my twenties that I began to see the subtle signs of exactly how sick I was. The bags under the big, brown, four-year-old eyes. The slightly hunched position I almost always sat in because breathing was an effort. I’m round-shouldered to this very day from all that bloody hunching.

So I frequently tried to break the no-walking rule. I wasn’t supposed to even walk the few feet from my crib to my room’s bathroom, but was ordered to ring for a bedpan. A bedpan. Shameful to me, disgusting to me, sissy. Yes, those were my four-year-old judgments, and they haven’t changed much. As odious as the wheelchair was the bedpan. When I saw the hallway was clear of nurses, I would climb out of my crib and use the bathroom in my room. Sometimes I was caught. There was bitchy scolding. I argued: I’m fine. I can use the bathroom and it doesn’t make me die.

Similar contre-temps happened over the wheelchair. If I needed to go to Xray, or to the bathtub down the hall, or to the playroom, I was supposed to be wheeled. How many times did I whine with tears in my eyes: I can walk. Who knows. I remember particularly one of these battles on a day when I needed yet another chest X-ray. I was determined as all hell that I was going to walk down the hall, and the nurse was just as determined that I wasn’t. Over and over it went until she started to yell. Every attempt she made to physically put me into the chair had resulted in small, wiry me slithering out of her grasp. So finally she hollered. She won, of course, but she also caused me an asthma attack with all that nonsense. The X-ray tech commented on the attack, and said: See, that’s why you can’t walk, and I knew it was baloney. I knew that if I’d just been allowed to walk, there would’ve been no attack. It was the stress of all the arguing and wriggling and squirming that had made the damned attack.

During my pneumonia sentence in jail, Easter happened. On Easter Sunday afternoon, my parents came to my room with the basket that the Easter Bunny had left at the house for me. I wanted to know why the Bunny hadn’t brought the basket to my hospital room, to which my father replied that the Bunny knew they were coming to see me and he thought they should give me the basket. One of the things the Bunny brought me was a painted tin Peter Rabbit with a music box inside. I was nutty for music boxes, and still am. The particular kind of tinkly, bare-bones, unsophisticated chiming that they do enchants me. I remember being weak that afternoon, still in my bed under my tent while the other kids were in the playroom having Easter fun. I remember how grim my parents looked, each in their own way, when they came into my room. They would already have got the news at the nurses’ station: She isn’t well enough to have Easter in the playroom. She needs to stay in the tent.

But all weakness and grimness and parts of Easter that had been ruined by pneumonia fell into second place when I began to turn the crank of my Peter Rabbit. His song was Here Comes Peter Cottontail, of course, and I played it and played it and played it some more. My parents were trying to converse with me, and all they were getting was one-word answers.  I suppose they wanted some sign that I was happy they were there, but they didn’t get it. Remember please, that I have Asperger’s. And for 39 years, I slipped right into my own private world whenever the public one was too ugly. I had been happy that my parents were going to come, but when they’d walked through the door with the gloom on their faces, I knew nurses had talked to them and said the same old stupid (to me) things nurses and doctors always said, upsetting my parents, and I just retreated. And Peter’s beautiful music helped me do that.


As I’ve said, and yet cannot stress enough, I hated the hospital. I hated the crib. Everything that was done to me to make me breathe better, I hated. The doctors and nurses made me feel a deep, dark loathing just to look at them. Most of this hostility would stay bottled up most of the time. Except when it came to my aunt.

My aunt would come to see me in the early evenings, after my uncle brought the car home from work. It must have been still chilly out, in spite of it being Easter time, because she wore a big fur coat every night. Was it real or faux? I hope it was phony, but I really don’t know. To my aunt I would demonstrate my raw, unbridled toddler suffering, a woe I mostly didn’t dare display to my parents, because the doctors were already upsetting them enough, to my mind. There was a nurse with a horrible stern, nasal, mean voice who got on the PA system every night to quack: Visiting hours are over. Visiting hours are over. When she started, so did I.  Standing up in my crib, grabbing the sides of the fur coat and pulling on them hard, weeping and begging: Aunt Franny please, please. Just take me home! I’m little, I can fit under the coat! Every single time she came to see me. She would stay patient and calm and explain why the hospital was the best place for me to be, and she’d love to take me home if the pneumonia would only get better. But I would just keep on crying and pulling and begging.  I never willingly let her go, that I can remember. Every single time, a nurse, or two, would have to come and peel my little hands off the fur coat, holding onto my arms until my aunt was out of reach so that I wouldn’t clamp onto that coat again.

Many years later, when I was in my late twenties and had a young baby, Aunt Franny told me how those visits tormented her. How part of her wanted to stop going to see me so that she wouldn’t be crying in the car all the way home and crying when she got back into her house. This was the same aunt who had occasionally broken the no-cuddling rule when I was the infant covered in eczema and splints. One of the sisters of my father. She wanted to stop going, but didn’t. I wasn’t trying to make her miserable, in complete truth. I never had a motive like that. I just wanted out, and I saw Aunt Franny and her fur coat as my best chance.


read…   Spite and malice…   Poison and snowflake trees…                                                           

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July 13, 2010

Page Five

That was the beginning of the trouble: that arcane word, and all the childhood suffering it stood for in my life. That was the medical people’s first tip-off that my immune system was psychotic.

When I was a teen or pre-teen or some beast like that, there was a company (which one?) that put out a cream they said cured skin troubles. The damned TV ad ran all the bloody time, it seemed to me. And they would list the ailments their cream would cure:  “Eczema, Seborrhea, Psoriasis.”  It felt like those spiders of words were attacking my mind day and night from the cathode ray tube in the living room.

And dark little spiders of my own would crawl about inside my brain: Do they have to talk about that stuff? Who cares about that junk? None of that crap has anything to do with ME. Denial. The convictions born of denial, like my toddler conviction that medical people and impedimenta would bring me to my death, not the immune system flipping out inside me. And as I got older, denial that that word eczema had anything at all to do with me.

Well, that word had had a lot to do with the first three years of my life. It had plagued and distorted those years both physically and psychologically, and the scars of the eczema torment, all of which happened before my earliest memories kick in, are with me for the rest of my life.

I’ve been told that I was six days old when my mother found me covered with huge red patches, and screaming. A whole-body outbreak. I’ve been told that I was taken to the hospital and had to stay there for some period while the doctors did their thing, and that when I was released, I was wearing splints on my arms and legs. As I grew (which was only very slowly, as I’ve been tiny in height all my life), I had to be given longer sets of splints. No one was ever terribly specific about how long this went on, but when I evaluate the several versions I’ve heard, I conclude that it was at least six months.

That was the treatment for such a serious outbreak of infant eczema in 1953: Splints, little touching, and washing with coal tar soap. If the medicos tried anything else, I’ve never been told about it. The instructions from the doctors to my parents were to handle the baby as little as possible. Only what was absolutely necessary for feeding, tar soap washing, and changing. No rocking, cuddling, fondling. My aunt told me more than once that when she was babysitting me, she defied the doctors. She said I would scream and cry with the pain and itching of the eczema (and I imagine with loneliness too), and that she would pick me up and cuddle me for a few minutes, doctors be damned. She said she couldn’t stand not to see a crying baby get cuddled.


Why no touchy-feely? So not to exacerbate the pain and itching. Why the splints? So that I couldn’t take my non-obedient infant hands and feet and scratch what was tormenting me, making it bleed and ooze and become infected.

But today… today we know from research that infants absolutely must be touched and cuddled if they are to do well in both body and soul. Oh well. Between the immune system and the Asperger’s I was born with, I guess I wasn’t going to do well. Being a minimally touched infant with furious itching and pain and loneliness, and little relief for any of this, I guess I wasn’t going to do well. Maybe this infancy event is why loneliness remains a terribly painful experience to this day, escalating to the point where I literally want to die to escape the loneliness.

Eczema returned to me on a much smaller scale over the years; a patch here, a patch there. But in 2000, it came again with a vengeance. I developed a misery on the insides of my hands that was relentless and for many months misdiagnosed. It started with an itchy, bubbly patch, like poison ivy. The patches get larger, they scale, crack, bleed, ooze, itch, hurt. It turned out to be dyshydrotic eczema, and once this was realized, prescription steroid ointment was the answer. It only cleared up completely? in 2008. At its worst, before the steroid, I spent many dollars on over-the-counter things, including vinyl gloves to wear for animal care, dishwashing, showering, because the pain of  having even a small amount of water touch my hands was maddening.

I still get a warning patch on one of my hands now and then, but so far I’ve been able to nip it in the bud with a non-script product (I forgot to take my prescription stuff off onto the streets of homelessness with me). So far I haven’t needed to ask my latest doctor for a new script, but after fighting this battle with my hands for seven years, I don’t dare be foolish enough to believe it will never come back.


read… All my stars…    Stolen stars

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July 8, 2010

Page Four

I’ve made two statements of conviction already, as a three and four-year-old:  I already know I can’t survive and I didn’t feel like I was going to die. These seemingly contradictory beliefs that I held as a small child (and still hold) are completely logical to me now (as they were then), and bother me with no contradiction. One statement refers to one level of existence, and the second refers to another.

I didn’t feel like I was going to die. Well why would I at three and four and five years old? What did I know about how it felt to be dying? Nothing. So I just kept insisting to myself and anyone who might want to listen to me (hardly anyone) that I didn’t feel like I was going to die, so what was all the worrying about. In my own opinion, it wasn’t my illness that was going to kill me, but all the doctors and hospitals and tanks and tents and needles, etc. That stuff was going to kill me, not my immune system.

That certainty of my continued life was a conviction that had totally to do with physical survival, and only that. I was unshakably of the opinion that as long as I stayed away from all things medical as much as possible, I would live.

But the other statement, I already knew I couldn’t survive, refers solely to survival on the emotional level. I already knew I wasn’t like other people, in some blurry way that I could only partly describe, but that I knew was essential to fitting in, to feeling like you were part of all the human way of going on, to getting the things you wanted to have. In other words, I already knew I had Asperger’s. I didn’t know it was called that; I didn’t know there were others who had it too; didn’t know how pervasively it was going to contribute to making me unloved and to making me a failure in terms of getting the things I wanted for my life.


read…   Braonwandering…    Lucked out

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June 29, 2010

Page Three

                 For Christ’s sake, Dotty, she’s cyanotic. Are you blind?

That’s Daddy, yelling at Mummy when he gets home from work, and I’m three —  or four —  or five; it happened more than once. It happened when I was blue in the lips, and the fingernails, and just slightly tinged in the whites of the eyes. It went on for years, until I was ten or eleven years old. I didn’t know it very clearly then, of course, but what made the blue was a serious lack of oxygen.                                                                                                                             

And what made the serious lack of oxygen was asthma. It was no ordinary asthma; it was severe. An atypical case. I was supposed to die of it, and I heard that over and over again for the first ten years of my life. And before I would die, I would end up in a wheelchair, too weak and oxygen-deprived to walk. This was in the 50’s. There were no steroids in general use, and no handy little oxygen units like the ones you see people with today. When I needed oxygen (it seemed like all the bloody time to me then), we had to call the firemen with the big ugly tank, because they were the only ones who had it.

My parents were under instruction to take the child to the hospital every time she wheezes after she’s already taken a pill, every time her chest heaves after she’s already taken a pill, every time she’s blue (pill or no pill). What was the pill? Adrenaline. Jazz-you-up-nervous-as-a-kitten-you-won’t-sleep-all-night adrenaline. Pale orange in color, football in shape, bitter and nauseating in taste. Over six or seven years I took more of those damned nasty things than I care to think about.

My illness in its acute phases sent my father into blind, phrenetic panic. Not that he didn’t behave like an adult and do what needed to be done — he did. He’d been a soldier in two wars, and knew how to perform in an emergency. The panic was in his yelling at my mother when he came home, found me blue, and she hadn’t called the firemen. The panic was in his plainly wretched face. The panic emanated from his brown Greek skin.

As a very little kid, I couldn’t understand it. I certainly didn’t feel like I was going to die, and I absolutely loathed the various doctors for telling my father all this exaggerated garbage and getting him all worried. If only those stupid doctors would get the hell out of my life, I’d get by with the nasty pills, and my father wouldn’t be terrified.

My father loved me then, those first ten or eleven years, I was sure of that then. After that, and for the rest of his life, I was never really sure again. He loved me, and so of course the idea of my dying was frightening. But I had to get a lot older than five before I understood how terrifying the impending loss of a little child is to a parent, and before I could look back on the behaviors that had so annoyed me and made me inwardly roll my eyes, as understandable panic on the part of a parent who had serious anxiety to begin with.

Both of my parents suffered from severe anxiety, as do many other people in my extended family, as do I. And though in my mother this anxiety didn’t often seem too aggravated by my illness, for my father the severity of my asthma and allergies was a diabolical trigger.

In my teens, a period when my ashtma was much, much less severe, we could talk sometimes about the cyanosis and the panic and the firemen and the impending death in a joking way, laugh a little at it; but in the days and years that it was going on it was, as far as my child eyes could see, the blackest, ugliest thing in my father’s world.

And me? All I was consciously aware of at the time was bitter annoyance. But in thinking earlier today about writing this, I realized that I didn’t start buying myself anything blue until I was forty-two years old. No blue clothes, curtains, blankets, pillows, dishes. Once in a while a piece of jewelry with a blue stone, but that was it. Until I was forty-two. I wonder now, today, if I didn’t hold some kind of subconscious grudge against the color blue for decades.



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June 10, 2010

Page Two

It’s 1956, and I’m three years old. We have chickens, two or three dogs, two cats and a parakeet, and we all live on a little dead-end street called Leigh Road in Hamilton, Massachusetts. There’s a lake beside this neighborhood, and I love it, but I’m not allowed to be taken there very often because I get sick from the lake.

It must be Saturday, because Daddy hasn’t gone to work and I’m watching cartoons. I’m not sitting in front of the TV, though, I’m over near the table where we eat, standing up, looking across the room at the cartoons. I start wondering if I can make cartoons inside my mind, because I need things that feel safe to hang on to. I already hang on to animals, and I hang on to my family, but they can be hard to be safe in. I don’t seem to be like other people, in a lot of ways, and I know already that I can’t survive. I can’t survive because of the sickness the doctors keep saying I’m going to die from, and I can’t survive because everything about the world around me is too hard and too loud and too ungentle. I wonder if I can make the cartoons, and use them as another thing to hang on to.

I try it. It works. I can make a story in my mind with pictures and voices and falling downs and standing ups and everything. I smile there near the table, and that’s a big thing, because I don’t smile a lot. I smile because I can do it, I can make another life for myself in my mind where things are more gentle, where I can hang on. I will do this for the next 39 years.



The life I made in my mind was not  — please spare me any moronic riposte  — schizophrenia or delusional activity or any other psychotic nonsense. It was a typical way, I now know, that some autistic people use in order to cope. To withdraw in whatever way they can into the autos, the self.  My alternate life included all the things that real life does: illness, injury, lies, divorces, mean kids, whatever. It was no happy fairy land. The crucial differences between my created life and my actual one were these:  1. In my mind, I had a lot more confidence in myself, and I spoke my mind more often.  2. The other characters in my created life behaved and conversed in ways that I could figure out and understand, even if I didn’t agree with them.  3. There were some people in that life who valued me.


(felix and tweetie bird at

read…   Alternate universe…   Neverending solitaire

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June 8, 2010

Page One

8 June 2010

I’ve always been depressed, from the earliest days to today. Always afraid, ever unsmiling and deeper than my years. I’m dead now, on this day at this age, in every way that has any real significance for a life. Everything I wanted most and needed most to keep, has been taken. And being in this way dead, I try now to describe what all this was — all this everything that I wanted and needed in order to still be alive.

This is the only advice I have to give myself at this age, on this day, that has any real validity in the context of what was the past:

                          Bite the hand before it feeds you,
                          feeds you poison, feeds you shame.
                          Bite the hand before it beats you,
                          beats you to a bloodless name.


I wish with fervor, wish with regret, wish with tears and remorse, that I had been this sort of person. That I had bitten and run before anyone, ever could get too close. Like a frightened animal, which, in many other ways, I have really always been.

 Forr the fourteen stolen, murdered friends, which disaster has left me the mostly dead soul I am at this moment:
Manchmal wünschte ich,
            meine Gedanken wären ein Buch,                                                    
                                und ihr könntet darin lesen.              
                                          Was ich glaub’, was ich denk’,
                                         was ich zu tun versuch’.
                    Was richtig, und was falsch gewesen.                             
 Ihr könntet darin blättern                                                                                                          und euch sehen;                                                       
es erzählt euch                                                           
Zeile für Zeile,                                            
Gedanken, die ich mit euch teile                                                   
ohne das Worte                                                                                          
                       deren Sinn
                                                                        ~~  reinhard mey
                                                                              (with license)
read…  Braon…    Stolen stars                                                        
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