Acceptance of multiple sclerosis is very difficult to think or write about because it is not a finite act. Two years ago I could have said, and believed it to be true, that I had accepted the fact that I had multiple sclerosis, but I have discovered since that one continues to learn to accept different feelings and conditions as part of the same illness. Perhaps others are more clear-thinking and clear-feeling, and acceptance is for them a once and for ever process.
Although with hindsight it is now realised that I have had multiple sclerosis for many years, there was no question of acceptance until the diagnosis was made. When the diagnosis was finally made I was so shocked that it did not really mean anything. Probably in the first few days I hoped to remain an ostrich and carry on with my usual tactics of taking no notice and working rather harder. After the car crash, and when I finally stayed at home and rested, I remember feeling stunned with a very real sense of loss. The only time that I have felt this feeling before was when my father, of whom I was very fond, died.
It has been said by others that the diagnosis of any chronic and intractable disease such as multiple sclerosis can have the same effects as a bereavement. Bereavement has different effects in different people but seems to follow a fairly recognisable course. The first phase can be one of shock and bewilderment. There may be denial that anything has happened and a complete failure to realise its significance. I know that during the first weeks I felt quite numb and existed through each day in a mechanical sort of way. It was probably fortunate for me that all the children were at home and I continued going through Acceptance the motions of getting breakfast, getting them off to school, pottering about the house doing a few chores and getting a meal for their return in the evening.
I had a great many letters, largely because my mother told many of our extended family and friends. I answered the letters, again in a trance-like state. I was commended for my courage— this I felt to be quite mistaken because I could not believe I was showing any courage while running away from the facts. I had become accustomed to using selfdiscipline through previous periods of ill-health. It was relatively easy for me both to lose weight and keep to a non-animal fat diet because of the long years when I had to discipline myself hard to keep going at all. The fact of keeping to a diet probably helped me during the early weeks because even in my stunned state I realised it was something positive to do. Possibly I developed an obsessive attachment to the diet and this helped to keep other problems out of my mind.
This initial stage of shock and stunned bewilderment is followed by a sense of realisation of the loss. This realisation may be accompanied by either the open expression of grief or with outbursts of anger about what has happened. Certainly I realised at some point that I had something wrong with me physically that would not go away and over which I had only limited control. I think the full implications and horror of becoming disabled only hit me and still does hit me when I am working and get so incredibly tired.
The idea of a body image is now widely accepted but was fairly new when I first heard a talk about it almost twenty years ago. I am not invariably impressed with new psychological concepts but this one impressed me at the time and I have remembered it. Two people who are both of more than average height can have entirely different views of themselves. I have seen this happen at very close quarters. My mother and I are exactly the same height but she would describe herself as a tall woman and I have never thought of myself as anything other than average height except when buying cheap dresses in chain stores! My own feelings about height seem to have been accepted by both my daughters who are fractionally taller than Acceptance I am but seem entirely happy with the image their bodies have for them. In the very early months of pregnancy, although there is no actual change in body size, the body image can change very much so that the pregnant woman feels quite a different shape. The reality and the image can be widely different.
I experienced this change in body image. Apart from clumsy hand movements and some difficulty in walking, especially in the dark or on uneven ground, nobody would have noticed anything wrong with me; yet at that time I had sudden and repeated views of myself as maimed and disfigured. There were times when I felt a very real revulsion for myself and felt that everybody must feel as revolted by me as I was. These very negative feelings caused depression and sometimes an almost paranoid feeling that I must be disliked by everybody because of the physical change in me. It is easy to dismiss this as the foible of an unbalanced mind but I have discussed this problem since with a woman in a very similar position, and again with no visible disability, and her experiences and mine are almost identical.
Looking back one can see the lack of reality in this conception of oneself but at the time it was very real indeed. This period of depression over the change in my body image passed, but at times it has returned and for a while caused as much suffering as it did originally. Gradually I reconciled my mentally conceived body image with reality. The reality was that I was slimmer than I had been for twenty years and with no visible signs, at least to the casual observer, of disability. After I had the opportunity to re-equip myself with a considerably smaller size in clothes and found pleasure in borrowing my daughter’s clothes, my negative feelings became less. I lost my sense of revulsion and regained my self-respect as a slim woman instead of as a considerably overweight one.
I did not consciously feel anger or bitterness about having multiple sclerosis, but probably these were feelings that I could not allow myself to experience. I might have felt better if I had.
I could have felt angry that the diagnosis had not been made many years previously when it might well have been, if I had been seen by a neurologist instead of a psychiatrist. There is no doubt that this misdiagnosis caused me a lot of difficulty and even suffering but on the other hand I could not have believed that an earlier diagnosis would have changed the course of the illness of multiple sclerosis a great deal.
In retrospect I think my anger was directed against myself thereby causing periods of depression instead of being directed outwards against some convenient medical figure. I can only guess, but I think my overdependence on doctors in the early months was also a queer way of showing my angry feelings. I know that anything I was told to do became a matter of law and I had to achieve any goal that was laid down for me including the one of weight. I became easily agitated and alarmed by trivial events and expected medical help to sort out problems which in my normal frame of mind I should have managed alone. Now it is reassuring to know that medical help is available should it be necessary. Perhaps in a sense I was taking it out on doctors—different doctors—who had in many ways in previous years ‘taken it out’ on me.
The third stage of a typical reaction to bereavement is said to be one of apathy; this I do not remember experiencing. By the time I was back at work and had recovered a little from my dejection and period of mental confusion, there were so many problems to be solved each day that I would have been unaware of apathy. The times since when I have come nearest to it have been those when I have felt intensely isolated and lonely, and lacked the energy to do anything about it.
I live in an isolated place far from old friends and relatives and I was and often am alone, but when well I never feel either lonely or isolated. Now that travelling is becoming increasingly tiring I can see that contact with old friends will be more difficult and these patches may well increase. While there are always people with whom to make contact and things of interest to do here, these actions do need a certain amount of initiative and drive. At recurrent intervals I have neither. Strangely enough at the worst times I have often had a totally unexpected telephone call or letter which seems almost like an answer to an unexpressed cry for help.
The fourth and final stage of bereavement is described as readjustment, rehabilitation and acceptance. This stage I certainly went through and, indeed, continue to go through it, particularly after times when the going is tough. I found that I made a sort of mental balance sheet of what I had lost and what I still had to my credit. I had to do a great deal of mental spring cleaning and sort out those things in my life which were of real importance and jettison some undertakings and ambitions which were of less value. I am beginning to realise that many of my initial judgements were fanatically hard and that perhaps I should be better if I allowed myself a few more of the interests which give me pleasure without being too tiring.
In making my mental balance sheet I realised that I might well have lost longevity. This did not greatiy bother me and I realised that I should be happy to be around for another ten years to see my family through to independence. The expense of the children’s education had always been my contribution to the family budget and while the possibility remained that my husband might retire I did not want to unload that responsibility on to him.
I realised that loss of my mobility was a possibility but again this did not worry me unduly. I should be sorry to give up travelling but while I still had family ties I should not want, in any case, to run the risks of immunisations which can have a bad effect on multiple sclerosis. Otherwise the thought of my mobility did not worry me very much.
I have been a bookworm since my early years and there has always been a collection of books waiting to be read. Less time spent rushing around and more time spent quiedy reading could be a welcome change. I have many sedentary interests including a great fondness for listening to music and my large collection of records and good stereo could keep me happy for more hours in the day than I have to spare when mobile. In the past I have done a great deal of sketching and painting, and from the room where I should spend most of my waking hours, if less mobile, I have wonderful views over the sea, the cliffs and a fishing harbour.
While I was at home and my right hand was getting steadier I started playing around with pen and colour wash, and there is no doubt that the harbour views will provide many pictures!
My family must come first as long as they need me. I have realised that in putting my family first that there are enormous difficulties in keeping away from all thoughts of martyrdom. Adolescents do not want to feel grateful and neither do they want to know that a parent is existing primarily for them. Nothing must stop them from getting free and able to lead their own lives in their own way. In this direction I have made and continue to make many mistakes.
I think it is important to learn a certain degree of selfishness so that they need feel no guilt in the pursuit of their own interests. I had to learn to say ‘no’ when asked to take on new commitments. Previously I had found difficulty in refusing a demand but now decisions could be made more clearly and at times more ruthlessly because there was a definite measuring stick. I have realised since that there is a very narrow margin between restriction of activity, which is good, and hibernation, which is bad and destructive of self and even of family.
I also had to do a physical spring clean because I found that life was simpler and less tiring if everything stayed in a reasonable place. Tidiness has never been one of my virtues and it is still very difficult for me to be orderly! However, it is worth the attempt because it is very much less tiring if one knows exactiy where are the paper clips, kitchen knife, white cotton and the car keys. Effort spent looking for things is effort wasted and when fatigue is a constant problem, the expenditure of effort has to be spread very carefully.
I am sure that acceptance of an illness like multiple sclerosis is necessary before life can continue. Life can never go on as before but will have to progress more slowly and possibly in a different direction. It can take a long time to learn to achieve the things that are possible rather than habitually fail to achieve those that are impossible. The difference between the two will result either in growing happiness and a renewed sense of fulfilment or repeated frustration and despair.
You may say that acceptance is the wrong word to use and the wrong attitude to take. ‘One must learn to fight an illness such as multiple sclerosis’. I would agree with this if a fighting attitude is used in a constructive way towards rebuilding a future and surviving to the best of one’s ability. I have seen a fighting spirit used in the wrong way antagonise doctors, family and friends and lead to many disrupted relationships and bitterness. Willpower and a fighting spirit can probably do little to control the disease in multiple sclerosis but if used rightly they can help in making the best use of mental and physical powers.