When disruption arrives in the body of a four year old girl

Disruption isn’t an event or process. Disruption interrupts process. You respond, manage and deal with disruption – you do not orchestrate it. That was a lesson I learned when I was four.

I have vague memories of when I was four. Images and feelings, some played out like internet gifs in my mind, interspersed with stories from my family. Letting me piece together an event, a disruption, in my life with a mixture of facts and emotion and feeling. A process that shaped so many aspects of my physical and psychological well being for many years, but one that I only have an incomplete recognition of, like a jigsaw puzzle – with not only missing pieces, but pieces from other boxes shunted together daring me to accept that they fit, when I know deep down they do not.

I remember my neck feeling stiff and my mother taking me to our local doctor. She shoved a wooden stick so far down my throat I immediately puked on the paper lining the bench in the office. I remember the neck brace the doctor, having failed to identify what was wrong with me, had given me to wear. Looking back, with the facts and the real story, this doctor never could have known what was to come.

I remember my father carrying me in his arms through a parking lot. In my memory it was snowing and I was watching the flakes fall as he ran for a door at the end of the parking garage. I do not know if this was the case, if it really was snowing, I have never cleared up that ‘fact’ with my mother. My mother told me my father had me walk to the car at our house not realizing – probably hoping – I wasn’t as sick as I was. At the hospital, he carried me.

I don’t remember my mother finding me in bed, my lips purple, my fever so high I was hot to the touch. I don’t remember the ice bath the doctors and nurses at Mass General Hospital in Boston put me in in a attempt to bring down my fever – which was so dangerously high one doctor remarked that I must be very strong, he had seen adults go into convulsions with lower temperatures. That part of the story was told to my mother.

I remember the fever hallucinations. The way the world felt unreal, all my perspectives were off. I felt like if I grabbed something chunky, it would feel like a thread. I felt small – I remember hiding under tables, like a mouse, hiding from the doctors. My memory of that is clear. I was small, I should have been small enough to hide – but I wasn’t. I was found. I don’t remember the ice bath, nor the spinal tap, I was given.

I bit a doctor, as he tried to take blood from my left arm. A child physiologist was called, I was a child out of control. The shrink told my mother she understood why I bit the doctor – the doctor hadn’t explained what he was trying to do. He had just grabbed me, like I was doll with no understanding, and tried to stick a needle in my arm. I don’t remember fighting back. But in the crook of my left arm is a two inch scar – the scar from the botched and aborted needle attack – that proves I did fight back.

No one knew what was wrong with me. My lymph nodes were inflamed. I was yellow. My lips were purple. My temperature was way over 100 degrees F.  I had had a myocardial infraction (otherwise known as a heart attack). The doctors wanted to open my chest and look at my heart.

They didn’t know what was wrong with me. They wanted to explore. They wanted to discover. They needed to learn.

‘Unless you can tell me why, you are not opening up my daughter’s chest,’ was how my mother replied to the team of doctors at Mass General Hospital – considered to be some of the best medical practitioners in the world.

I don’t have a scar on my chest.

The doctors could not explain what they were looking for, they couldn’t justify the intrusion.

My next memory was of my aunt. She appeared at my bed and I was confused. She was wearing a mask and a blue suit. She couldn’t touch me because there was plastic between me and her. I remember asking why she was wearing a mask and why she couldn’t touch me. I was angry. ‘My aunt is here, she will get me out of bed and take me home’, I thought. Her home where she lived with my grandmother and grandfather. But she didn’t. She didn’t pull back the plastic to take me away from the doctors and nurses who turned me this way and that way and poked and prodded me and forced me to take pills. I was was angry at her. I turned away.

My mother wanted me moved from intensive care – from ICU. The unit was in full view of the emergency room at the hospital – a hospital in the middle of a urban city. I had told her a story that morning when she arrived of a man covered in blood. Of people shouting. Of people using words like ‘gunshot’ and ‘wounds’ and ‘police’. I have a picture in my head, of a man falling to the floor of the hospital – his shirt red and soaked. But that picture is not from my memory – I do not think – I think it was constructed from my mother’s words.

I was getting better, I could be moved. I was relocated to the unit with all the babies. I was surrounded by cribs and crying. All the babies were sick – they were sick like me. I was awoken one night – there were many people rushing and moving around the crib next to me. The masked people, the people in blue. They weren’t yelling in anger, but in urgency. There were noises and bleeps and squelches. One of the women turned to me and urged me to go back to sleep – but I watched. This one is my memory.

A woman was pushing, she wasn’t wearing a mask, she was being pushed back from the crib by hands and bodies. Then everything went silent, the people in masks, dropped their arms to their sides, and I heard a scream.

It was scream I would only be able to describe 30 years later. I read a novel a while ago, written by a man, who described the noise made a mother who had lost a child as ‘that of a wounded animal.’ This scream was no wounded animal. I have seen animals in pain. They howl and groan. They nip and bite you, out of confusion. They look up at you with trusting eyes as you pat their heads while a veterinarian sticks a needle in their leg to stop their hearts.

This was the scream of a person who wished they were the one in pain. The bone chilling horror when you realize that you can’t change places with your child. You can’t take away their pain. You can’t exchange their death for yours. I couldn’t place that sound, until I had given birth, until I had become a mother. My mother kept her noise from me – that is her memory.

I had mucocutaneous lymph node syndrome otherwise known as Kawasaki disease. Today, especially in Japan and the United States, it is a rare, but well known childhood syndrome. No one knows what causes it. Environmental factors have are thought to play a huge role. Many children had been exposed to new cleaning products and chemicals prior to experiencing symptoms. (My nursery school had just had its rugs cleaned)

From its more common name, you can guess it was first diagnosed in Japan. It predominately affects boys, under the age of five, and often they are children of Asian ethnicity. In the 1970s, no other child on the East Coast of America, and no Caucasian child, had been diagnosed with the disease. Mass General Hospital is one of the best, most advanced hospitals in the world – and no one knew why I was sick.

Disruption had arrived in the body of a four year old girl. And the doctors and nurses, my parents, my family – my two year old brother – all had to deal with it, in their own way.

To this day I can recognize others. Other adults who had spent a significant amount of time in hospital as children. A tiny part of them is held back, removed from others, a bit of control your mind needs to hold on – in order to make sense of a time when you were certainly not in control.

My husband ran across a road in Cheltenham in Gloucestershire, UK when he was eight years old. The next thing he remembers, a couple of months later, was lying in a hospital bed laughing at a story his mother was telling him about his two year old sister doing his piano practicing.

He had been hit by a van that hadn’t seen him. Doctors had taken apart his skull and pieced it back together. They urged his parents to turn off the life support machines, because even if he did wake up, he would be a vegetable. His mother, a former nurse, nodded and then dismissed the doctors, and continued reading her son passages from books by Spike Milligan.

The next few years of my future husband’s life was spent learning to talk and walk and function with a new brain that had been disrupted and put back together again.

When we are faced with disruption in our industries we are tempted to break it apart – with the pretext of learning – the justification that discovery and learning are goals in itself.

Unless you can tell me why, you are not opening up my daughter’s chest.’

When things seem hopeless, when disruption only shows destruction and hope is hard to identify – it is advised to fail fast, to move on, to hit the kill switch.

She nodded and then dismissed the doctors, and continued reading her son passages from books by Spike Milligan.’

Disruption isn’t something you welcome, nor is it one you should avoid. Disruption is inevitable and a part of life. The lucky among us experience disruption in milder forms than sickness or a via the broken body of an eight year old boy. But there is no formula for dealing with disruption – there is only a myriad of ways to manage it.

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