Open Writing

Eventually, we find the hospital and miss the entrance. It’s a dual carriageway so I must continue on until I can turn around, drive past on the other side of the barriers, turn around again and hopefully discover the entrance without the fast moving traffic crashing into us from behind. The car park seems to be randomly plonked at the side of the long driveway. The hospital can be glimpsed in the distance between some trees. At every step, I feel James tense with pain.

We stand for ages at the reception desk. The young woman ignores us and continues what sounds like a social conversation on the phone. When she finishes, I pass the bit of paper we’ve been given across to her and without looking up she gestures vaguely off to the left.

‘Follow the yellow line on the floor.’

More walking. The yellow line runs out. Apart from a cupboard, we appear to have come to a dead end. James is white with fatigue. I try a giggle at the ridiculousness of it all, to lift our spirits. It sounds mad. I wonder if I’m losing my mind.

Someone pops out of the cupboard. There is another long, narrow passage. We come to a small room with very busy people rushing about.

‘Your details?’ asks a woman sitting behind a computer. She holds her hand out. We stand silently whilst she transfers information to her machine from the bit of paper I give her. We answer her questions and are then sent back to the first desk.

We wait in hard chairs and feel like aliens in this world where we don’t know all the words or rules. James is given a test that involves sticking lots of square plasters to his chest and connecting them by wires to a machine. The technician is cheerful and answers all James’ questions. Then we’re sent back to the cupboard room for another test.

I want to scream, to tell these people that every step for my son is agony but I don’t think they’ll hear me. Worse, I don’t want my tantrum to turn them against James. It feels like they’re just people at work, doing their job in the enormous factory called a hospital. We are the irritating patients (and worse, parents of patients) they have to work around.

At last, we head home feeling completely mangled and despondent, enraged and helpless. I have to do something. I stop at the library and find a book called ‘Love, Medicine and Miracles’ by Dr Bernie Segal. Once home, I start to read. It’s full of excellent advice about how to begin to regain some control, to lessen the awful feeling of being a helpless victim.

In the middle of another sleepless night, I get up and write a letter to Dr Edwards. I tell him all about James as a person and how important he is to us. I thank him for his treatment of Howard and James but also outline the appalling events of the day. I feel better for getting these thoughts and feelings down on paper and manage a little sleep.

*

One of my earliest memories was when my family moved out of Detroit to a ranch style house in a much more rural area. At four years old, I was allowed to take my two year old brother, Keith, out to meet some other children, on our own, for the first time. I stood at the edge of the road, tightly clinging to Keith’s hand, and looked both ways loads of times before daring to pull him quickly across, despite there being no cars for miles around.

My first friend, Gail, lived just down the road from me and we were inseparable for a few years. I remember the night the nursery school teacher came to our house to explain to my parents why this best friend, whose birthday was exactly a month before mine and a few days before the admission cut off date, would start proper school a full year before me. I never forgave the woman. As far as I was concerned, it was also her fault when Gail moved away not too long after that. My other memory of nursery school was when my hands stuck to the frozen chains of the playground swing.

I never really had another best friend in that neighbourhood. I was always too old or too young for the other girls that lived nearby. By the time my youngest brother, Charlie, was old enough to follow his big brother about like a puppy, it was clear Keith preferred this ‘hero-worship’ to the bossy meddling of his sister. Despite their endless squabbles, they didn’t really want to include me in their games. I used to wade into their disputes and try to protect Charlie, which wasn’t appreciated by Keith. He and I always seemed to be arguing and were once sent to another room to ‘sort ourselves out’ during a meal. Without an audience, we soon ran out of steam.

However, Keith was my brother and I was the only one allowed to fight with him. Walking home from school one day, I came across a bully, larger and older than I was, beating Keith up. The anger that exploded in me made me feel about seven feet tall and without hesitation I flew at the brute with my metal lunchbox until he ran off.

It was the early sixties and children’s TV was becoming popular but my mother felt that children should be outside and in motion to keep healthy so we were regularly turfed out. I rode my bike, joined in the neighbourhood hide-and-seek, kickball or softball games, climbed trees, rerouted streams, made dens and watched cloud shapes. In winter, gangs of us used to ice skate on the ponds, play hockey, build snowmen and have snowball fights.

But I still spent a lot of time on my own. I found escape in books and expression in writing. Often, I found that getting thoughts down on paper made them more manageable.