One in Thousands E-Book

Dorrit Barrett

• Herausgeber: Books on Demand
• Kategorie: Sachliteratur, Reportagen, Biografien
• Sprache: Englisch

Seitenzahl: 301

Veröffentlichungsjahr: 2023

Beschreibung

Ehlers-Danlos Syndrome is probably the most overlooked physical handicap in the world. A genetic hiccup changes your body completely, and as you look "normal" , nobody understands why you can't BE normal. Not even your doctor, who may have forgotten all she ever heard about the rare syndrome. The author has fought for a "normal" life for 77 years. It didn't become normal, but both interesting and meaningful in spite of her invisible enemies: Her own shame of not being like everybody else, and an environment - including the medical world - that was convinced her problems "were all in her head". Her kind of EDS, the classic, only appears in 1 in 20.000 people. Some believe as few as 1 in 40.000. Other variations - there are 13 in all - are far more common. You may have heard of people who suffer from one of them. You may even know one.

Leseprobe

This book is for my son, Kristoffer S, who gave my life so much meaning after all.

What do you do, if you are inattentive for a moment and suddenly have a 10 cm long, open gash somewhere on your arms or legs?

Depends on who you are.

I think, oh, shit, not again! I had plans for this afternoon!

I have Ehlers-DanlosSyndrome, Classic. It has happened to me more times than I can count.

And every time the biggest problem is that nobody has ever seen anybody like me before.

Table of Contents

You Have What?

From Before the Beginning

Big Sister

In Another World

Parents

The Center of the Real World

Curiouser and Curiouser

Are You A or B Material?

Frankenstein’s Bride

Studying - the First Glimpse

Best Friends

Student And Housewife

Extra Curricular Activities

The Annus Horribilis

Fiancée - Yea!

Married, Episode One

Divorce, Episode One

If at First…

Dumb Blonde Makes Good… Money

Suburbia

Married, Episode 2

Expecting a Child

Chaos

Modern Women

Married/Not Married?

How to Work 10 Hours on no Sleep

Writing

Writing for a Living

The Crash

Disasters And Miracles

Men And All That

Change of Venue

Guilty Without Being Charged

Migratory Birds

An Extra Lease On a Full Life

Come on! We Need Help!

Getting - Old

Spanish Spain

A Near-fatal Decision

Free - and Home

Status Quo - And Maybe Hope

What Can YOU Do?

We Are Here - But...

1. You Have What?

Nobody in the medical world has as much theoretical knowledge about symptoms as a newly-minted doctor. He or she is brimming over with information, most of it learnt from books. Some symptoms will be present in a large percentage of their patients, some they will never see.

In the late 1940s Dr.Theodore Woodward, professor at the University of Maryland School of Medicine, instructed his medical interns: “When you hear hoofbeats behind you, don’t expect to see a zebra”.

In other words: look for the more likely solution, not the exotic one. Hoofbeats usually come from horses, and many of the things a GP meets in her surgery can be cured with healthy living and time - the stuff a skilled grandmother would prescribe.

But there ARE zebras in the medical world. And more often than not they are treated like horses. Because what they suffer from may be known, but appears so rarely that doctors have forgotten that it exists. Zebras are likely to be overlooked, disbelieved and - worst of all - ridiculed.

I am one of the zebras. This is how we may sound:

What symptoms do you remember having as a child?

I see my kids suffering with nose bleeds, bed wetting and I can close my eyes and remember facing the same struggles growing up.

They cry in pain and I just want to hug them. Just a few short months ago I discovered the world of EDS and I cried for my psychologist saying I thought everyone lived in pain. I thought it was normal and everyone just managed it.

I was told my entire life I was lazy and exaggerating.

I don’t want to raise my kids this way.

Do you mind sharing the list of symptoms you remember having as a kid? I want to become a better mom and understand their pain and recognize the signals to be able to help them cope.

Thanks.

Two Brazilian zebra-foals. Photo and text by permission of Mangalpady Âû L Patricia

This post and picture on the Ehlers-Danlos website on Face-book are not the reason I wrote this book. I had decided to write about my life several times, but somehow, no matter how often I tried to do it, it always came out as somebody else’s. story. Stories which had heroines who resembled me, but were strong, capable and everything that I was not. The kind of girl l would like to be.

After several attempts that didn’t ring quite true, I came round to the idea of simply writing a kind of autobiography. Telling about what my life was like - as me. Warts and all.

I wrote in Danish, it was meant for my family and friends, and for the grandchildren. They are so close to me, but in other ways more than two generations away. They can’t remember a telephone or anything else without buttons and “press one for…” And they have never heard of hard times, family nights in front of the radio, or looking up something in a book.

That makes my life-story a bit of a historical comment, too. An American friend that I have known for 50 years though we have probably not spent more than 48 hours together, said he was looking forward to reading it.

So I left out the very personal family-family things and started rewriting it in English. After all, as a Danish politician became famous for saying: Denmark is too small a language to have a ballet. And I wanted to give more than the 5,8 million Danes a chance to read about me - and especially Us. The unalterable misfits in a world full of change.

I started ab ovo - from the very beginning. Why not? In 1759 Laurence Sterne published the two first volumes of Tristram Shandy, a novel of a life-story that would end by being nine volumes long. The hero wasn’t even born till the third volume. But it still sold well...

In the first draft I put an old medical joke at the top: “Do you know what to give a man who has everything?”:” A really broad-spectrum antibiotic.” And then I added a few contrived sentences about being a woman who had everything and couldn’t get anything for it.

Then I found - not God, who has honestly not played a large part in my life - but an EDS-site on Facebook. Hundreds of people like me - or different versions of me. I was drunk with the pleasure of “coming home” for weeks. I had always wanted to be part of a crowd, and this was my crowd.

A crowd of people asking the questions I had asked my whole life, and sharing answers and information that would have changed it, if it had been available. To doctors, social workers, nurses, bosses. Me. If it had been published. And read.

Why does a Brazilian woman have to ask the same questions today that I could have asked 50 years ago in Denmark? Not as heartbreakingly beautiful and not to so many readers as she can ask it today. But our syndrome - the result of a genetic quirk-was first depicted two thousand years ago. It has always been there. But without anyone wondering og trying to explain why. It was just Nature.

So people had to live on it or die from it. You could become an attraction in a cirkus. Like midgets or giants or a two-headed calf. Living on it was debasing but easy, but living with it not so. Few medical persons were interested in abnormalities that only affected a few people and couldn¨t be cured. They were mainly an interesting topic of conversation at dinner: “Guess what I saw, today, darling. A young woman who could stretch her skin several inches from her face, and put her palms flat on the floor in front of her. Her mother, who was at least forty-five, could do it, too! Really quaint. Nature is amazing”.

Some of these amazing creations may have ended up in asylums, because they complained about pain in a new place every day or got hysterical pregnancies. Their stomachs swelled up, they threw up and fainted. If they were virgins, and claimed they had never been with a man, so that God or the Devil must be the father of their babies….well, maybe a few EDS-girls were burnt at the stake.

At least that hasn’t happened in recent years. But a psychiatric diagnosis or at least a suspicion that we were hysterical or “highly strung” has been hinted to most of us at some point in time.

I know above all of this from the EDS-sites on Facebook. My original idea was to quote bits about our troubles anonymously from the sites to prove my point, and I asked for general permission. Some people thought it a brilliant idea, and some threatened litigation. My favorite group was no longer accessible the next day.

In a way this is not really surprising. Some of us hate the idea of anyone knowing. I did for a long, long time. I hid my problems, because I wanted to be NORMAL at all costs. Being an ivalid? Being handicapped? NO!

People vent on the sites. They don’t want to risk being recognized even by a favorite phrase or their general style.

The problem in connection with this is that WE are the ones who hear about all our problems. Others don’t. And far too many haven’t the faintest notion we exist. Including a large number of the people we depend on for help.

I have tried my damndest to hide my rare and painful syndrome all my life. The shame of suffering something I had absolutely no influence on, has been my number one handicap. It has ruined parts of my life.

Telling about it is the one thing I can do. It may help somebody. In a sense it has already helped me. I’m no longer ashamed. A lot of the shame is turning to anger. Why are we still overlooked and harmed by so many incopetent people in the medical system?

This syndrome, this collection of odd, often invisible and debilitating bodily phenomena, is there to stay. At least for now. My variation, Ehlers-Danlos Syndrome, Classic - the one that leaves gaping scars - is so visible that it is usually diagnosed. It is there, but it is rare, one in more than twenty thousand people, they think. But at the moment 11 different types are known, and there may be as many as one EDS - affected person in every ten people. They are just not so visible, and in fact quite a few never get a diagnosis.

There are loads of information out there, but too little gets through to the patients or the people capable of making us feel a little better.

In my opinion many factors share the blame for this. Money. Lack of funding, of course, but also lack of status for doctors who don’t work with a scalpel or find a cure for something that scares the Hell out of everybody like cancer or Covid 19.

Add to that the general perception of women as weak, physically and mentally. Maybe there are more women than men who suffer from EDS, but they are also more prone to speak up and see a doctor. So it appears as a female problem. Women are also the ones who give birth, if they choose to do that - or if they don’t have a choice. Add to that that women often have two jobs: one that they need to get food on the table, and one equally tiring at home. Women’s lib has given them the possibility of working, but it has not rooted out the old idea of Kinder, Kirche und Kücke still being women’s god given duties, too. Practical equality is relatively unheard of except in the Nordic countries, and in the intellectual, progressive and moneyed classes in the West as such. So the women suffer most.

If women can’t hack it, they are fired. If they risk admitting they are not like everybody else, they are probably not hired in the first place. A man, on the other hand, might be. Especially if he showed his scars openly and was in a wheelchair. Because he is the breadwinner. He might even be the token handicapped of the firm and have ramps built for his wheels. Be a photo opportunity for the local newspaper with his trousers pulled down and his splints showing. But who wants a picture of a perfectly ordinary woman who just can’t do anything for long - even sit in a chair?

Maybe you have seen photos of the adorable, sad looking Toby, the cat with EDS, whose sagging cheeks and sad look have charmed the world.

But photos of positions EDS-people found comfortable were deemed gross and offensive party-jokes and not admitted on some sites.

Disabled animals are cute, and you feel an urge to help them. Handicapped people must be brave or be quiet. Helpless women are adorable, too, but only if they are healthy. And preferably quiet.

Well - I am no longer beautiful, and I have never been quiet. Only about the one thing that really mattered. I don’t think I can change the world or cure EDS, but I can sure as Hell tell people that it is there, that it is a bitch, and that it needs more understanding, help and attention than it gets so far! We have the means now. So what is the excuse for not using them better?

2. From Before the Beginning

Denmark was occupied by Germany during WWII. We received information of the Liberation on May 4th in the evening. It came from London over the radio, preceded by the three opening notes from Bethoven’s Fifth, and every Dane has heard it at some time in their life.

Black-out curtains were torn down and burnt in the street, candles appeared in the windows. The next day Copenhagen celebrated in the town-hall Square. My mother, who was young, fair, strong and 5 months pregnant, climbed a lamp post to get a better view. My father stayed on the ground, looking after her. The way it was from day one between them.

So I was there although I wasn’t born till August 18th. I have later found out that I was probably the result of a New-Year celebration, which my mother has never confirmed or denied. She and Dad were mad about each other, newly-weds and young. She was totally inexperienced, whereas he had ”a bit of a past”- not a bad combination.

If some of you do the math, you will see that the dates don’t fit the usual gestation period for human beings. I was 6 weeks premature. Many years later my mother cried with relief when I told her that “we” usually are. She had always thought that her antics in bed had provoked an early birth. But the amniotic sack “belongs” to the fetus and has the same – faulty – genes.

Nobody knew at the time, and a lot of people still don’t

One of the recurrent questions on EDS-sites is about giving birth. Is it “normal” to give birth prematurely?

The answer is yes. It is also relatively “normal” to have a really troublesome pregnancy. And to suffer damage yourself. My mum was lucky, She was young and strong - and healthy. My EDS was a mutation. Nobody in the family has it. And of course nobody had the faintest idea what I was.

God I must have been a disappointment to my sporty mum!. Small, bluish pale, bald as a billiards ball, wrinkled hands and feet. Skinny and rather lethargic. When the matron of the private clinic walked her rounds, my mother defended me: “She was born prematurely” to which the starched apron answered: “So I see.”

Being premature, I later learnt, gives you a bit of an advantage in life, if you are “finished” enough to function. While the others stay in the oven, you begin to live and experience life outside it. I learned everything early, including not to disturb my parents. My mother was told, as mothers were at the time, that it was a bad idea to spoil babies. They should sleep in their own cot, preferably so far away from the bedroom that screaming out of scheduled feeding hours did not disturb the parents’ sleep.

These ideas about how you MUST treat a baby change regularly. Somebody sees the light, prints a book, and insecure mothers do what they are told - even when it goes against their own feelings.

I’m told I was an easy baby.

I also began to get around and walk early. But not very steadily. And that is when difficulties began. My first encounter with the Emergency Room was at 10 months. My mother loved to sew, and automatically used the upholstered back of her chair as a pin-cushion. I was staggering about in the same room, and as she suddenly couldn’t locate her needle, she started to look at me…

At the ER they found it. It was stuck above my larynx, the x-ray showed. My mother, who was only 21, was frantic and guilt-ridden. As she pleaded with the nurses to tell her what would happen, a nurse hardly older than herself told her selfim-portantly that it was a good hospital and “sometimes they could save even babies”.

Nurses could be like that. They would like to be in charge, but they always play second fiddle as women are usually told to do. In innocent white coats. At that time they even wore little white caps like maids, and until not so many years ago they were evaluated regularly by the matron, who would even comment on body odor and general appearance. Some were even struck in the face for answering back or committing other inexcusable sins

Etta Lake, “The Elastic Lady”, obviously had EDS Classic. She appeared in cirkus as one of the “rarities”, alongside “The four-legged Lady” and “The spotted Boy”. The photo is from 1910.

Well, they did save the baby, and mum had to invest in a new needle. The one they fished out of my throat with a pair of special pliers was exhibited in a cabinet like the pea that proved H.C. Andersen’s princess was a genuine princess.

I, too, would have made a fine princess. Everything left a mark on me. My skin was soft and milky-white; if you pinched me, there would be a bruise, if you took hold of my skin and pulled, it would stretch endlessly like in a Tom and Jerry cartoon. And it split for next to no reason.

Ehlers-Danlos Syndrome, classic.

My mother’s uncle was a brilliant GP of the kind who would take your appendix out on the kitchen table if necessary, and he diagnosed me early. There was no one in the family who had it, and as there was of course no internet; he must have simply read his way to a diagnosis that was really rare. At the time the name of the syndrome, which was first described by Danish Doctor Ehlers and French Doctor Danlos, was connected with people who were contortionists and “Elastic Ladies” like Etta Lake.

The double-jointedness was so strange in itself, that a lot of other symptoms were not mentioned, and nobody had the faintest idea what caused the entertaining abnormality.

It is all a question of genes, one of mine is just odd and has decided to make all connective tissue hyper elastic and brittle at the same time. As connective tissue connects every bit of your body to something else in it, this individuality makes it very hard and insecure to live with.

As a young child I could stretch my folded fingers out in front of me and lift them over my head and continue round the back without bending at the elbows. At 77 I still occasionally place my hands on the floor in front of me just to see if I can still do it. I can. The downside of that is that I’m always the one who has to pick up stuff one of us drops on the floor.

School at the time taught “gymnastics” one hour a week.. Physical education had very little to do with being healthy. Girls were taught to be graceful, not strong. I had no problem lying on my stomach and curving my back, till my toes were on my forehead. Charming and feminine to be so plyable. Looked healthy. Recently I saw a video where an EDS-lady crawled through the dog-flap because she had forgotten her house keys.

It’s fun presented like this, but it was also hard, and what made it even harder was that eventually it leads to pain. And that it is not very visible. I look rather normal – especially in the winter, in pants, long sleeves, or skirts below the knees. But the abnormality has been both physically and mentally crippling for me. I have been ashamed not to fit in. Ashamed to ask for help, to cause trouble. attract attention or even comments. Example? For years I went swimming every morning. It took some time to get around to it, because I was so ashamed of being in a swimsuit that revealed it all. One morning a little girl asked her mother: - Why does the lady have such ugly, blue knees?

My mother would have killed me for asking something like that, but this was at a period of time where many parents subscribed to an idea of not correcting their children, because their pursuit of knowledge might be harmed if their curiosity was curbed at all.

So, the mother said: - Why don’t you go and ask her?

She did. I answered, barely politely, that I had been in an accident.

But in reality you might say that I AM the accident. Of Nature.

This has resulted in victories and disasters.

In childhood the ER became a home away from home for years. My rubber band ligaments made me dislocate joints and above all stumble. Whatever hit the ground first got bruised, and especially if there was bone underneath it, the skin would split. My forehead was full of scars in all shapes. At the time things like butterflies or surgical glue were unknown, so everything was sutured together. With sutures like twine.

There were two general beliefs among surgeons: one was that children quickly forgot pain, and the easiest thing was just to fixate them and go ahead. The other was that children mended well. No need to give anesthesia* or take special care with the wounds. So I was a wreck on the way to hospital every time, even after my mother was allowed to hold my hand during the recurring procedures of stitching me back together. If they hadn’t seen me at the local ER for a time, they told me that they had been quite worried something might have happened to me.

The wounds did not mend well. They took their time, were often infected, the scars widened, and even the scars from sutures remained highly visible. My forehead looked like patchwork. When I was old enough to decide or question stuff, I got bangs.

I don’t remember much about most of the episodes, because I was so young. But I remember later times when I split my knees and shins. Sometimes doing nothing at all. ‘

I was not allowed to play dangerous games, and on this occasion, like on many others, I was just watching, standing on a bicycle stand. That is a steel construction meant for fixating bicycle wheels. There were lots of them in Denmark where everybody had a bicycle in those days. They consisted of two curved steel tubes about 5 centimeters apart. My foot slipped down between them, and the skin on my shin was curled up like a potato peel.

I walked up the stairs to the third floor where my gran lived, leaving splashes of blood on every step. When there was one flight left, I started crying. Mum came out, white-faced, and I said, - Take it easy, mum. It’s not as bad as it looks.

But it was. The treatment meant that shocked nurses poured peroxide into the open wound, a young intern called a more experienced doctor who called a surgeon who had no notion what to do. He decided to root around for the tip of the triangular flap of skin and start somewhere. It lasted forever. And still no anesthesia for children. I would have forgotten by the time I was home.

Well, it was more than 70 years ago, and I remember it like it was yesterday.

Pain was a constant in my life. I got accustomed to it. Not only pain from being patched up, but from staying too long in the same position, from joints, from blood vessels that burst for no reason, and from sudden movements that dislocated something. Stomach pains. Growing pains that kept me and the rest of the family awake for days. Doctors told us it would pass. They still do. Today desperate EDS-sufferers tell us that at 25 they are STILL told that they suffer from growing pains. Or, alternately the favorite explanation from doctors who have no idea about EDS or its symptoms: That it is all in their heads. Because they are too young to have these symptoms. Or too old. Or too - much! .

When I was a child many things were less painful than the growing pains, but still rather frightening. For instance going to the loo. If I pushed too hard, a bit of my colon fell out, and I couldn’t push it back in without help. So I yelled: “Somebody – I’m inside out again” until one of my parents came to my assistance. I was really worried that this would happen when I started school – who could I ask for help with something like that?

It happened less frequently as I grew up. But I never went to the school or any other public toilet, if I could avoid it.

In my family we were lucky enough to have several doctors, and hospitals in Denmark were - and are - free. We had no need for expensive medicine, for there was nothing that could alleviate the pain, anyway. So I was not a financial burden to the family. We were a proud - sometimes a bit snobbish - middle-class family that didn’t ask for help, and we were never offered any. I learnt to grin and bear it. Recently somebody pointed out that my married name is actually pronounced just like “bear it”.

I would avoid things that were too risky, when I could. Take up exercise like badminton, skipping rope, playing ball-games where you didn’t run on cinders or clay etc. In the summer we all had swimming lessons in the sea. You had to look out the window in the morning, though. All the sewers of Copenhagen ended in The Sound, the narrow stretch of sea between Denmark and Sweden - and if the nearest Dannebrog – Danish flag- showed easterly wind, you would literally swim in the feces of the neighbors.

Children played outside all year round. “Go out and play” meant “get out of my hair” and you heard it every day. Being in your room was a bit of a punishment. It usually meant that the grown-ups were talking about something you would have liked to hear.

Toys were few and uninteresting, and all a girl could do was paint a picture in a book or maybe look through a kaleidoscope. Boys had soldiers, often handed down from older brothers. Life was lived outside. Summer and winter. Just a question of clothes.

We lived in safe surroundings, a little village of semidetached houses in one of the suburbs of Copenhagen. Modern houses, pretty enough to win a prize – brick, mortar and wood. Hundreds of mainly young couples and lots of children. Little back gardens with the latest thing from America – a barbecue. A Kitchen with room for a table and chairs, a living room with an adjoining small room for the live-In maid, whom nobody could afford. Most families pulled down the wall and got a larger sitting room with a dining table for dinner parties. The family always ate in the kitchen. Upstairs were the master bedroom, two smaller rooms and a bathroom with a tub you could sit in. Luxury, even though all the upper-floor walls were slanting and the small rooms were close to triangular. Only I could get into the bath without problems.

The basement we never entered. The boiler was there. Coal arrived in lorries and were shoveled into the basement by strong men with black faces. And the old-fashioned washing cauldron with a wringer was there. Washing took a whole day every week.

A very child-friendly environment. We played in the street, a kind of soft ball, for instance. There were community lawns surrounded by bushes perfect for hide-and-seek. We played with marbles – terra, it was called – and with chicken hoops; exchanged pins with colored heads, collected paper napkins and glossy pictures. Had paper dolls with different clothes, some of which we designed ourselves. The most popular paper dolls came with a metal jar of biscuits. A grown white woman, a white and a black girl. We had never seen a black person in real life, but black dolls, or as they were allowed to be called then, negro-dolls, were popular.

We watched very few films, and most of them were Danish. If the plot required an African, it was usually some popular, fat Dane, who was painted black and had an equally fat Danish accent.

Until Disney conquered the world of children, globetrotters showed films from Africa. Grainy black and white silent dancing in grass-skirts and with naked breasts. Nudists gave lectures about the healing rays of the sun on your naked skin and showed even grainier films where you might get a glimpse of a bare ass or breast.

Plastic was entering our world. Many things that had been made of rubber, porcelain or glass were now plastic - the perfect material that didn’t rot, splinter oir dry out. Cars, dolls, badminton ketchers, and a million little thingummies that became the craze for at time.

Civilized people were properly dressed, that is they wore bras, ties and jackets. Unless they were workers. Women were in high heels to go shopping for groceries, didn’t smoke in public and usually had a couple of hats or at least a head scarf. You went to the hairdresser’s once a week, and no married women had straight or loose hair. Very few dyed it, and peroxide was the only way to become a blonde. The average hair- color was lovingly called “liverpaste”, and hairdressers were women. Many of them could be recognized by their front teeth, which were chipped from opening hairpins.

I was three when we moved there, and my mother was pregnant. I had been told that I would soon become a sister and not just be by myself. The idea didn’t move me one way or the other. I remember that we came back from the clinic and my excited parents withdrew to the kitchen pretending to talk. I was left alone with the little, red-faced bundle on our modern, green and white upholstered sofa. I just looked, and eventually started playing with something. So what? He didn’t even look like a child. That the insignificant bundle would make such a difference in my life, I could not imagine. And no, he did not have EDS.

3. Big Sister

But being a sister turned out to mean being responsible for someone, and I learned I didn’t like it. Sisters took care of their little brothers, and mine - like most others - was difficult to take care of. He did dangerous things, climbed everything, threw things and broke things. He was very much in the way, because I was not allowed to lose sight of him, and he was a real nuisance other girls wouldn’t accept. We fought incessantly.

Once in the car my parents threatened to throw us out and leave us if we didn’t stop and desist. After two minutes’ truce we were at it again and found ourselves in the street miles from home.

After a short, intense parley we began to walk, hand in hand, in the direction we decided was home. About ten minutes later our frantic parents and the car glided up to the curb next to us. They had parked round the corner and expected to find us, crying and contrite, where they had left us. When they located us somewhere totally out of the way, we were still holding hands.

This sibling rivalry never really stopped, but it changed, as Lars grew stronger than me. We were very alike on the outside, fair, high cheekbones, a good bone structure – but we could not have been more different mentally. We both tried to be in charge, though. From the start only by physical means. I was three and a half years older than him, and I was supposed to look after him – so why would he always oppose me? It often came to blows. Once I bent him backwards over the metal frame of his bed and just kept on pushing till he yelled out, and my mother came running and found an angry bruise on his back. We both denied knowing anything about how it got there.

He must have been seven and I was eleven when I backed him up against an open cupboard full of shelves - and tried to close the door. When he cried out, and I let go, his shoulder and arm looked funny: hanging limp at his side.

I was cold with fear and remorse. We decided it would be best to go to the ER about six kilometers away. I helped him into his jacket, and we walked to the bus stop and waited. We had bus-passes – there was nothing strange or dangerous about children riding a bus on their own.

At the hospital we waited for an hour until somebody asked what had happened. We delivered an acceptable version of the truth, the white coat took my brother, arm still dangling, to get an x-ray. I was trying to think up a plausible explanation for later, when our parents came home and found him in a plaster cast.

Not that we would be beaten. We never were, though it was quite normal at the time. I remember only one time as a teenager when my mother slapped my cheek in desperation, and she has later confessed that the look I gave her made her afraid to ever try again. But we were punished. We were grounded, which was terrible for my brother and suited me fine, because it meant I could read. My modern but very young mother played the only alternative card that was acceptable at the time: disappointment. Loss of trust. Cool behavior. Guilt. Terrible for me, completely insignificant for my brother.

Well, my parents didn’t find out about the trip to the hospital until we were grownups. My brother came out from the x-ray, shook his arm into its normal position, and said he felt much better. He went through the whole charade without batting an eyelid. After that we were both more careful, but occasionally we still blew up.