Ten Years with Arthrogryposis

The first ten years with Arthrogryposis meant hospital, operations and walking with calipers. I didn’t know anything different and didn’t give it that much thought. This is my life, like your life is yours, and we just get on with it.

Arthrogryposis Growing Up
Jane (that’s me, chaps!) after various operations straightening my legs 1965-1966. The plaster is up to my armpits where I’m lying down.

I remember nothing of early operations; odd flashbacks to daft things like the plaster saw, which can take off my leg, not just the plaster. Even though I knew it simply vibrated, demonstrated by a nurse holding against their hand, by the time it reached my leg it was a bloodthirsty saw out to chop me up. I screamed – a lot.

Trouble on t’Ward

Arthrogryposis Growing Up | Break A Leg!
Queen of Hearts, circa 1970. I added a full length plaster cast to my leg after falling off the bed.

There’s the time I won a hospital ward fancy dress competition. A red balloon is my prize, which I happily bat about and follow – straight off the high bed, down to the floor, breaking my left leg. The traction, the pain and the straitjacket they put me in afterwards are vague memories. Well, it was a body jacket with thin straps that tied to the sides of the bed; no more falling off the bed for me. The orange drink during that first night I do remember; it tasted lovely.

At the end of Ward One is the Men’s Ward, housing miners recovering from knee surgery. A jackdaw regularly visited them, and once I could walk so did I. Open, tall doors, warm summer sunshine, a gentle breeze and a cawing, black bird on my head.

Friends let the skipping rope lie on the ground so I could step over it. I can’t recall thinking I was any different to the other children on the street, not in those early years. That came later, as I grew up.

I ran up and down the street, playing hide and seek and running from my Mum when it was time to come inside. I bent the metal of my calipers, fell down a lot and the leather of the straps rubbed my legs raw.

No gain without pain

Walking with calipers, circal 1968 | Arthrogryposis
Jane, walking with calipers, circa 1968

My Mum and I sometimes reminisce, how did I get up the next morning and put the calipers on again, when they’d been so sore the night before? We haven’t got an answer; I just did it without thinking in those early years, it didn’t occur to me to wonder why.

I went to a school for disabled children, trundling off every day in a big London taxi. Random memories include choosing to study English every day, which means I am rubbish at Maths. Learning to use an ink pen – in those English lessons I gave myself. And a teacher called Miss Salmon who married and became Mrs Mackrel – but maybe I’m making that up!

My operations during these first ten years were only on my legs; straightening my knees, fixing my ankles and toes so that I could walk. I gained movement in my arms and hands simply by learning to use them every day. Initially my parents encouraged this with a stick across my pram, placing my hands on it as they left me to sleep. One day, the story goes, they came back and found I’d lifted my hands to the stick myself.

Treatment today is different; the benefits of intensive physical therapy are known to help children with Arthrogryposis increase their movement. It doesn’t stop there; I might be over 50 years old, but intensive deep tissue massage works wonders for me now. It increases movement, releases tense muscles and reduces pain. No, I didn’t believe it either until I tried it, but it truly does work, and it’s part of a regular routine to keep me moving in my later years.