‘I looked like a tortoise trying to lift my head’

2011-09-01 00:00

IN 1954, after a wonderful first year at Grahamstown Teachers Training College, I returned home to Bulawayo for Christmas. As Christmas ­approached I felt dreadfully ill. On ­December 25, I lay on my bed wishing I was still young enough to have something to play with. The next day, feeling awful, I had to get my young sister down off huge granite rocks, and the following day was persuaded by my brothers to make up a tennis four.

I got home and collapsed, paralysed, only able to move one leg. I was taken to Gwanda hospital and put in a little back room, where I had two crises, two nights running, falling out of bed each time.

The rivers were in flood, and the low-level bridges under water. When the water subsided and the bridges were passable I was taken into Bulawayo, where a wing of the Isolation Hospital had been set aside for polio patients. I was under a heart specialist, and a lumbar puncture ­revealed polio. A physiotherapist ­visited, and said I had lost at least 50% of my muscles.

After six weeks I left hospital, ­dragging my bad leg, and 18 kilograms lighter. My mother, ­sister and I stayed in a boarding house so I could have physiotherapy and hydro­therapy at the municipal pool. How I hated the pity of the able-bodied school ­children — “shame” was ­repeated by each as they passed ­me. My only prayer was that I would look normal.

Home to Gwanda, where I walked, swam and did tapestry but, unfortunately, “carried” my ­weak arm. ­Fortunately a doctor uncle visited and suggested I go to the polio clinic in Salisbury, run by the Red Cross under Mr Nangle. My elbow was broken to straighten my arm, but my shoulder was left frozen and my curled fingers were left as the tendons would be transplanted into my thumb which pulled backwards. I had a leather brace which pulled the thumb into a normal position, but was always breaking.

After a year off, I returned to college and completed my three-year ­training, but spent much of the July and December holidays having to rest due to the enormous effort of, not only the work, but making myself do everything else — sport, dancing, etc. Being different was not an option. I learnt that some people do not like people with disabilities from two lecturers. When we had to demonstrate before examiners, I was given music and had to make figures with pipe cleaners. I played the piano with the knuckles of my polio-affected right hand. The­ ­examiners must have admired my ­efforts as they gave me a distinction. In January 1958 I had the tendons transplanted, and started teaching with my arm in plaster. What a painful operation. A year later the operation had to be repeated as Mr Nangle misjudged the extreme weakness of my hand.

In 1960 I married, still weighing ­only 44 kgs. We lost the first child I carried, and then had two sons. Only after the second was born did I put on weight, and my skeleton right arm filled out. In 1965 we lost the child I was carrying, and the Dilation and Curettage caused ­severe back ache, which has remained but become less severe since I retired. My third full pregnancy was difficult and painful.

I taught on and off until 1974, and then full time until 1986 when headaches and backache were unbearable, and I was really ill with spells in hospital. It was all labelled stress and sinus. Cortisone injections in my back had kept me teaching.

In 1990 I had an unfortunate back operation which only aggravated my problems, and the road back to walking was long and hard. In 1993, after visiting seven doctors and three ­specialists and often being shown the door, I went to the Addington ­pain clinic. I was put on hormones and told to swim long distances. The headaches were totally out of control. I looked like a tortoise trying to lift my head, but everyone insisted I would lose the existing muscles if I wore a brace.

In 1994 our son saw an article in an English newspaper headed, “The grim legacy of the polio epidemics”. So I learnt about post-polio syndrome. After many years of working hard to get muscles not affected by polio to work for those destroyed they were wasting due to overuse and pain, weakness and fatigue was the result. I joined the British Polio ­Fellowship and the International ­Polio Network in the United States, and getting the post-polio syndrome newsletters and help from the hospice doctor, I tried to get pain and weakness under control with heavy doses of valium.

A polio clinic was opened in St ­Thomas’ Hospital in London in 1996. My two-hour consultation with the doctor was wonderful. Someone who understood, and for the first time I had X-rays and blood tests without pain. The result was a brace for my neck. Back home to a neurosurgeon for MRIs — sadly not with the same care — and the realisation that there was nothing anyone could do except try and control the adverse symptoms. In 1998 we returned to St Thomas’ Clinic to get my medicines correct and an exercise programme from the physiotherapist.

I led a full life, only giving up sport when the effort became more than the enjoyment. Then turning to bridge. My hand, though claw-like, produced hand work of a very high standard and I have received awards for embroidery and knitting, at the Agricultural Royal Show. The right side of my body is losing muscle. Four vertebrae in my neck are tilted and so I now need a brace all the time, and even playing bridge causes tiredness. Fatigue ­controls much of my activities. Excellent medical people, steroids and ­occasional anti-­inflammatory pills or injections keep the pain under control most of the time — I have scoliosis and severe osteoporosis.

We ran a support group for a number of years and I spoke to Monica Fairall on our radio service, and at the launch of the polio vaccine in Cape Town. Two of us spoke at the launch to a hall full of children and parents who were not keen on the vaccine. However, when they saw and heard the result of an attack of polio they rushed for the vaccine.

The International Polio Fellowship keeps us up to date with any new developments, which help with coping with the many problems relating to post-polio syndrome.

We hope that the Gates foundation and Rotary International are ­successful in their aim to eradicate polio by the end of 2012. Their aim is that no child will ever know the ­crippling ­effects of polio. There are still four ­endemic countries — ­Afghanistan, India, Nigeria and Pakistan.

DO you have a story to tell about a health condition, procedure or medical drama that has happened to you? We’d like to hear about it. Please describe what it involved in 600 to 1 000 words, and send it to features@witness.co.za

POLIOMYELITIS, often called ­polio or infantile paralysis, is an acute viral, infectious ­disease spread from person to person.

Although about 90% of polio infections cause no symptoms at all, affected individuals can exhibit a range of symptoms if the virus enters the blood stream.

In about one percent of cases, the virus enters the central nervous system, preferentially infecting and destroying motor neurons, leading to muscle weakness and acute flaccid paralysis. Different types of paralysis may occur.


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