Losing One's Grip
First Published in the Listener, September 1979, R.A. Stothart of Wellington chronicles an illness that temporarily put him in the land of the disabled.
As a physical educationist by training, a recreationist by occupation and a games player by inclination, I was dismayed to realise that I was gradually losing strength in my arms and legs. At first I thought it must be fatigue – I had been painting my house and shifting of extension ladders and scaffolding was tiring. But a round of appallingly bad golf and the persistent fatigue, convinced me that something was amiss. A visit to my doctor and then to a neurologist confirmed that I had polyneuritis (Guillain Barre syndrome), a strange and perplexing neurological disorder which inhibits the transfer of messages from the brain to the motor neurons which move the arms and legs. The condition is relatively rare although about half a dozen cases are seen each year in Wellington Hospital. Curiously this disorder does not affect the sensory neurons and throughout my stay in the world of the disabled I maintained full sensory perception. There is no pain, just mounting frustration and dismay as physical control, mobility and independence diminish.
Polyneuritis is characterised by gradual loss of strength in arms and legs (in severe cases, the muscles of breathing) until some unpredictable bottom plateau is reached when gradual improvement occurs. The process may take a few weeks, a few months, or in some cases, more than a year. The usual treatment is rest – almost every case recovers with or without medical intervention.
In my case the gradual loss of strength, and hence of movement, was frightening. I was desperately afraid of immobility and I relinquished my independence parsimoniously. I learnt to adapt as strength and control faded.
I continued to drive my car even though the operation of the handbrake was awkward, but when I needed to use pliers for added leverage to turn the ignition key I decided that I should stop.
I had difficulty at first in lifting my arms above shoulder level or having sufficient strength in my fingers and thumbs to pull my socks on. I could not handle zips, turn a door handle, do up buttons, hold a book, turn pages of the newspaper, operate a transistor or help in any way around the house. I fell, or more correctly, collapsed a few times in a heap as the muscles holding my skeleton in place could no longer prop me up against the pull of gravity. I was unable to dress, undress or to feed myself.
At first I resisted the aids offered by the occupational therapist in my optimistic (but vain) belief that next week I would begin to improve. I had to learn to let people help me: to let people invade my personal space. It was not a question of embarrassment but one of desperately wanting to retain my independence.
One morning after my wife had gone to work and the children to school (and before I realised I was as weak as I was) I had a bath and found I couldn't get out. In one flash I glimpsed my geriatric future: I saw myself as old and fragile. Eventually I managed to roll out, crawl to the bedroom and force myself up onto a bed to await the return of the family. Child-like and fragile, I contemplated once again an inactive future, I saw myself as a constant burden on other people, demanding considerable time and effort every day.
Grip strength faded so that holding a knife and fork became impossible and I needed to be hand fed. This was the greatest loss of independence; to be hand fed by one's family requires a change of attitude I was slow to accept.
The bottom of the plateau was reached after five months deterioration that resulted in almost total loss of movement. At this point I spent some weeks in hospital. Through this low period I experienced the quick panic of claustrophobia. I felt trapped in my body, unable to react except inside my head. I felt as if my head was on someone else's body. I didn't recognise the body I saw and I certainly didn't want to claim it.
Household organisation had to revolve around me and with a working wife and two busy secondary school children I knew that I was demanding much of their time and patience. I listened to them doing the household chores with feelings of annoyance and inadequacy. I watched a year's chores mount up outside the house and in my impatience to recover I often passed on my frustration and irritation to my family.
I cast aside professional matters except that I always wanted to talk about them with colleagues and friends. But I couldn't cope with professional reading or decision-making. I deliberately diverted my mind towards optimistic and pleasurable thoughts. I knew I would recover in time and this sustained me and eased the black periods.
But I was bedevilled by thoughts about loss of confidence and diminished physical prowess. Would I lose permanently the ability or the confidence to learn new physical skills? Would I lose enthusiasm, energy, concentration and the ability to communicate? What was happening to my body through 12 months of enforced idleness? Would I be able to play golf again or ski or dance? Would I be seen by others in future as suspect or somehow below standard and hence vulnerable and doubtful? At times I was acutely embarrassed about being seen publicly as a disabled person but embarrassment passed as I realised that the alternative was loneliness and increased depression.
I was confined to a wheelchair for about three months and I learnt much about the problems of the disabled in relation to transport and access. But I learnt even more about myself. As a physical educator, I had frequently worked closely with disabled people and regarded myself as being able to establish good rapport and to empathise effectively. As I became increasingly disabled I realised that I was in fact, prejudiced. Intellectually, I could cope, but as I was thrust inexorably into the realms of the disabled, I recognised that I didn't want to be like them.
When I fully accepted that I was disabled, I enjoyed regular sessions of physiotherapy and the constructive help and advice of the occupational therapist. On one occasion, the therapist produced a swinging arm device which enabled me (after some practise) to feed myself again. This was a monumental leap forward in regaining my self-confidence and independence.
The device fitted easily on to my wheelchair but for some unexplained reason the wheelchair was recalled and I had to use any available chair. The feeding arm and tray did not fit these chairs and I had to be hand fed again. A change of wheelchair may seem minor but to me it was the most important thing in my life for three days and I was very depressed until the original chair was returned, thanks to the efforts of physiotherapists and the occupational therapist.
One of the treatments for polyneuritis is a course of steroids. Not all patients respond to this treatment, and some receive an initial boost and then relapse. In my case the effect was rapid and dramatic. From almost total inertia I perceived significant sensations of movement within 12 hours of the first injection. The first week of this treatment was joyous, I could feel sensations which had been absent for months. I could change position and sense recovery.
Recovery has taken a long time me. As I achieved greater control, I progressed from the wheelchair to elbow crutches, to a walking stick. I had to measure each footstep and to be careful about uneven ground. Heaving myself on to a bus was an effort while grip strength was still weak and once I didn't quite make it: As I tried to step on to the bus I lost grip and leg strength and gently rolled back into the gutter. It was 10.30 a.m. and I am sure that the driver and passengers thought I was an early morning drunk.
Throughout this experience I was greatly sustained by the reassuring advice of the neurologist (and hospital staff and support services) and particularly by colleagues and friends who dispelled my loneliness and occasional depression and introspection.
My family were models of equanimity and reassurance. No doubt they view me now from a different perspective but like me they learnt much of value.
I learnt about myself, but, more particularly I learnt about the disabled. I am convinced that as a principle the disabled should have a much greater say in the management of their own, everyday affairs, and most disabled people wish to be treated 'normally', particularly in inter-personal relationships.