By Lucy Ambrose
Names have been changed
It started on the final day of our holiday in early July 2002. I wrenched a muscle while carrying my suitcase up some steps to the car. At home I shifted heavy flower pots out of the shade back into the sun: not a good idea. It wasn’t that bad, however, and I carried on life as usual. I had a design job with a deadline two weeks after returning from holiday. I finished the job and sent it in. Doing this work didn’t help, but I was still able to spend a day in London shopping and going round an exhibition at the Hayward Gallery.
I turned over in my mind as to whether to go to see an osteopath or whether just to wait to see if the problem corrected spontaneously. Eventually I decided to see an osteopath that I had seen before and who had relieved, though not resolved, back problems in the past. He was away so I made an appointment to see another osteopath in the practice. This was the awful, regrettable moment and the trigger for everything that followed.
I had two appointments. On the first she made an adjustment to my lower back which caused my torso to feel twisted and made the original problem seem insignificant by comparison. It seems stupid to have gone back — partly to complain, of course — but I did, and came away even more twisted and in considerable discomfort and pain.
I rang her to complain again. I was so angry when she insisted that she had done nothing wrong and even had the gall to suggest that the problem was persisting due to my drinking tea which she believed I might be allergic to! So that was that, I was now in a really bad way. I had to look for help elsewhere.
It was now early August and my spine was twisted and I was in continuous acute discomfort which nothing would relieve. All the muscles in my back now felt as if they were in spasm. What to do next? Who to go to? Who could be trusted? Not my GP: I have never met a GP who had anything to offer for back pain except painkillers. I knew there was a chiropractor in a nearby town who was supposed to be good. I knew of people who had seen him with good results and that my GP practice also referred patients to him. So, fingers crossed, unhappy and scared, I made an appointment. He was reassuring. The osteopath had got it wrong: nothing wrong with my lower back, two or three chiropractic treatments would put it all right.
How wrong he was. I was reassured of course. And so began the downward slide.
I see in others who are being treated by osteos and chiros — and doctors as well — the dependency that develops when in pain and fear there seems to be just this one person who might help you; sticking with them because being alone without any support is intolerable. After all, if this chap with this wonderful reputation is NOT helping you, where can you go next? And what guarantee that someone else will not be as bad or worse?
I saw this chiropractor, let’s call him Ted, twice a week — more often as I got worse — from mid-August until early October. He seemed totally confident as he went off on what seems now to have been some private crazy tangent of his own. I told him as accurately as I could what I was experiencing as I got worse, not better. He was patronising. He didn’t actually tell me I was neurotic: not in so many words.
I guess it is just as well that my memory has shut down on much of the detail of the deterioration. But I remember the first time I was unable to read. I was in the conservatory, a lovely sunny day it was; just sitting ordinarily in a chair propping my elbows on the arms. And the contortion and pain in my neck. I couldn’t read, I couldn’t lift the paper to read.
I lost the strength to use the brake in the car and steering became dodgy, I couldn’t turn my body to see to reverse. I couldn’t drive to appointments and had to rope in friends to give lifts. My spine was losing its stability, yet becoming more stiff and inflexible at the same time. I could hardly move without feeling something ‘give’ in my back. All positions were painful; I wasn’t getting much sleep. I was controlling my anxiety and trying not to panic, but I was going to the clinic three, maybe four times a week, desperate for some sign of improvement. Ted was unconcerned, quite light-hearted about it really. Perhaps it was this, his — apparent— confidence that kept me going.
Earlier in the year we had booked a cottage on the Welsh coast for two weeks’ holiday in early September. I didn’t want to go. Ted insisted I was OK: couldn’t see there was a problem. The car journey was awful: my neck wouldn’t support my head properly. I could barely walk the evening we arrived. My back was quite seized up the following morning: my spine feeling crunched, bent and arched, feeling about four inches shorter than it should be. Joe found it hard to believe that I was as bad as I was; after all there was nothing to see, nothing I could demonstrate. Nothing wrong with my legs, you see: I couldn’t really be ill if I could walk about. I felt lonely and a bit desperate.
We struggled through a deteriorating week. I could do very little. Joe went off on long hikes and I went for bits of walks, telling myself it would help, knowing it wouldn’t. I sat a bit outside, but I couldn’t lean back properly in a chair, so I wandered pathetically up and down and round the tiny garden, killing the time. Every position was uncomfortable. In bed I tried lying every which way, back, front, side, with one pillow, two pillows, no pillows. I put four pillows under my lower legs as there was no way I could lie flat. I crawled from the bed on to the floor thinking the hard surface might help, putting my body and all my pillows in every possible arrangement, feeling cold, frightened and lonely. Eventually at 3 am I woke Joe and said we had to go home. I phoned Ted in the morning and arranged to see him and we drove back. At least by this time I had the sense to lie right back in the car with a cushion under my head.
Why go back to Ted? It seems stupid. But I didn’t know — we didn’t know — where else to turn.
As September progressed the treatment went on. I hoped I was on my way to getting better. Before Ted went on holiday at the end of September, he carried out what he supposed was a final adjustment at the top of my spine. I understand now what he was up to. He was attempting to straighten out a small spinal curvature, what is unkindly called a ‘dowager’s hump’, at the top of my spine which had been there for years. My musculature was not adequate to support what he had tried to do. About 36 hours later I felt quite suddenly, as I turned my head to reach for something, that the adjustment was starting to slip.
Over the next few days I felt my upper back breaking up — a tumbling, collapsing sensation that I cannot really describe. I now lost most of the strength in my arms. I was only able to sit if I remained totally upright; if I leaned back in a chair my neck muscles would not support my head properly. I could stand up or lie flat on my back: that was all.
Early in October, knowing I was too fragile to spend up to an hour in a waiting room to see a doctor, I phoned the GP surgery and asked for a home visit. By this time I barely had the strength to hold the phone up to my ear. When she came the doctor examined my back and of course there was nothing to show. She did a nerve function test which was normal, but unable to find anything to diagnose, she told me I was depressed, prescribed anti-depressants and left. The criticism of me for calling her out and wasting her time was implicit though unsaid.
I tried at this point to persuade myself that I was imagining the whole thing. Late one night I propped some pillows at the head of the bed and settled down to read. Less than a minute later my body gave way like a broken doll. I had to fling myself sideways to fall out of the bed. I lay for a long time on the hard floor in semi darkness and began to face up properly to what was happening to me.
It was a very lonely situation for me at this point.There was nothing to see that demonstrated in any way that there was anything wrong with me. In a way you can see why I was not believed. My physical condition was totally invisible. There was only my word for it that I was so weak that I could not even support myself sitting in a chair. That I could only stand or lie flat; that I was too weak to open the fridge let alone prepare food; that I couldn’t hold, let alone read, a book or newspaper, and I couldn’t watch television, partly because I couldn’t sit back in a chair, and partly because my neck was too weak to hold my head in the fixed position required.
Joe lost his temper with me one evening. Coming back tired from work and finding me flat out in bed as usual, he shouted at me: why was I lying around doing nothing all day when he was working and coming home tired. Why couldn’t I at least prepare supper for him etc. etc. We spent the whole evening shouting at each other. Eventually, after several horrible hours, it occurred to me to say something to the effect of: you’ve known me for twenty years now; have I ever behaved or been in the least like this before? He slept on it and by morning, to my great relief, he had decided to believe me. At least now the most important person was ‘on my side’.
The doctor’s visit was briefly reassuring — the witch doctor effect. Then a few days later, out of nowhere, I felt a another strange tumbling sensation like a landslip in my upper back. It lasted about six hours and at the end I was even weaker than before. I became almost unable to eat. At first I knelt at the table, propping my elbows to hold cutlery. Then Joe cut up my food, but I found I was too weak to chew and could only manage very soft food and soup and, for a time, Joe had to spoon-feed me. Joe threw a lot of expensive and very tasty organic sausages out for the birds after I failed to be able to chew or swallow them even when cut up into small pieces. He was too distressed to eat them either. I was now unable to hold a glass of water or a cup of tea and had to use a straw and a small plastic cup clutched against my chest in order to drink.
Thoroughly frightened, I rang the doctor again (using the microphone facility on the phone because I couldn’t hold the handset any more) and asked for another visit. She rang back, clearly irritated, and would not come. My attempt to raise the issue of the chiropractic treatment was met with a curt dismissal. Of course it put the doctors’ judgement in question, as they referred people to Ted; and consequently criticising him prejudiced her against me. [Much later on I was able to talk freely to another doctor at the practice and they no longer refer patients to him].
In desperation Joe and I went back twice to Ted’s chiropractic surgery, first seeing a male colleague, who examined but refused to treat me. Interestingly and surprisingly he commented critically on Ted’s ‘old-fashioned’ chiropractic techniques. Later on, and memorably, I saw D, a female colleague. This time the fifteen minute car journey to the surgery left my neck so weak that I only just made it into the reception before dramatically falling over. A man and a woman with two young boys emerged from the surgery to stare in horror at this middle-aged woman lying prone and sobbing on the floor. It’s strange how the mind works: though my distress was real enough, lying there on the floor part of me found their reaction really funny! D was kindness itself. She read my notes and appeared shocked by what had been done to me by Ted. She carried out some gentle massage (what Ted would have scathingly called ‘soft tissue work’) but wouldn’t do any more than that. At this time I could feel that what I now know as T1, my first thoracic vertebra, the big joint at the top of the back where the back joins the neck, was displaced and very painful and uncomfortable. There was no way, however, that D was going to do any manipulation and get implicated in the mess that I was clearly in.
It was now the middle of October. Thoroughly frightened and still desperate for professional help and advice, Joe phoned Ted when he came back from his holiday and demanded a home visit. He turned up at 8 in the evening. He examined my back. Because he was standing so close to me, it was odd: I could feel the relaxation of relief in his body: he had not found something he was very afraid of finding. He told me to ‘pull myself together and get on with my life’. Joe tried to explain that I was too weak even to eat. Ted said ‘it must be something to do with her childhood’. The silence in the room after that was deafening. We waited for him to go. But he burbled on for a while and then went downstairs and spent a good ten minutes standing in the hall ingratiating himself with Joe. He left saying lightly to me, ‘Come and see me again in about a month’. The visit left us feeling revolted, even somehow violated; also questioning our capacity to be polite even in the most challenging circumstances! Interestingly he never sent us a bill for the visit. So that, for us, was the end of him.
So: back to the local GP practice.
I rang yet again and asked to see the senior partner. Joe arranged to take time off work to be with me as it had been clear from the last GP visit that there must be someone with me to give support and back up what I was saying.
Unfortunately the doctor arrived half an hour early and I was alone. He came with his script prepared: I was obviously malingering. I had been clearly told that I had depression. I had already wasted one doctor’s time with an unnecessary callout and now I was wasting his time. He didn’t examine me. We sparred for maybe ten or fifteen minutes. I remember, sitting bolt upright as usual on the edge of the bed, saying with as much dignity as I could muster, ‘I know I am awkward and shy and highly strung, but I am NOT A FOOL!’
Joe got back about ten minutes after the doctor left and found me out of control, sobbing and storming hysterically around the house not caring what I did to myself. And it wasn’t until about ten minutes after he got back that I was able to remember that, at the end of the visit, on the doorstep, the doctor had said that he would refer me to a consultant at the local orthopaedic hospital.
Half an hour later he rang us. He refused to talk to Joe, who had to hold the phone to my ear. ‘So you believe me now, do you?’ I said. ‘Well, I had to test you’, he replied.
No apologies, then.
It was now the end of October. I was sent for tests, blood tests, for some unpleasant diseases. But I wasn’t much concerned about this. I was, really, if only in a very limited way, the only person, apart from Ted, who could know at all what was wrong with me; I didn’t believe that I had multiple sclerosis or leukaemia or motor neurone disease or any other sort of cancer or disease. The test results came back negative as I expected and to Joe’s great relief.
So I was referred to Dr A, a doctor’s doctor, and as we found out later, one of only three or four doctors in the country with the expertise to diagnose and treat the condition I turned out to have. So my luck had changed at last.
We were told that we would wait at least four months for an NHS appointment so for the first time in both our lives we went private. We were told we would get an appointment in about six weeks.
By early November, I was experiencing increasing discomfort and pain around the T1 vertebra. It had become so bad that lying on my back, my only possible position apart from upright, was getting difficult. Over about three days the pain increased and there was a bulging, throbbing, ballooning sensation on each side of my neck. You can put up with a lot if you have no choice, but eventually, around midnight one night, I just found it too painful to lie down any more and, as I couldn’t sit, I was left only able to stand which in my weak state was quickly very tiring. I just wanted now to go into hospital.
Joe called the emergency doctor. She came fairly promptly, youngish, kind and sympathetic, but she said the rules were that while I could still stand I did not qualify for a hospital referral. She offered a childbirth scale injection of pethidine in my bum. She carried this out and departed. After a while I could just tolerate lying down and I even got a little sleep. I was woken by a sudden searing pain shooting like intense and violent forked lightning out of a black sky, flashing at great speed from the top of my head down to the base of my spine. I could see all this clearly, visually, in my mind’s eye as it happened. And then there was just a lot of pain and I was very frightened and lay quite still for the rest of the night, too scared to move at all. Eventually morning did come and I told Joe and we were both very scared for a while. After about an hour there was such a hugely welcome anticlimax as I realised that the pain was no longer getting worse, was starting to recede. We both breathed again.
Over the next few days I just lay in bed. I understood that the T1 vertebra, coming under ever-increasing strain, had finally and suddenly adjusted itself back into its right position and that the pain would probably go on receding and that in some sense this was the beginning, partially anyway, of some sort of recovery. It was also the beginning of a very weird time which lasted for a month or more — I can’t really remember — when I could mentally perceive my upper body as if it was a medical drawing (and I couldn’t choose not to do this). I could feel, and see in my mind, the muscles, coming up my back, meeting at the base of my neck, then wrapping over my head, and the muscles in my face as well. I was aware of the shape of each muscle individually and I could feel its fibrous nature; I could feel the ligaments as narrow cream-coloured ribbons criss-crossing between my shoulder blades and the nerves threading like cold white wires through my flesh. The nerves to eyes and ears come from the spinal cord out through the T1 joint. I became very sensitive to loud noise, and, though my sight was OK, my eyes felt very peculiar as the ocular muscles were affected by the traumatised nerves exiting from the damaged T1 joint.
Three weeks after the doctor’s visit there was a call from the hospital and we were given a cancellation appointment with the consultant on November 17th.
There was massive development and rebuilding being carried out at the hospital and we saw Dr A in the characterless environment of a portakabin situated at the end of a long featureless brick and concrete corridor. A burly, blunt no-nonsense Londoner, built like a small tank, Dr A is not a man who wastes energy smiling when he meets you. But I liked him, we both liked him. He told it how it was and underneath the scary exterior he was compassionate and even tender at times.
What Dr A had to tell us during the hour that we were with him (and, good man, he always addressed me, not Joe, as another might have done in the circumstances) was really fascinating and we listened agog to everything he said; but I felt almost transparent with weakness, a fraught and frightened wraith of a person in the tiny featureless consulting room. I didn’t retain a lot of what he said, so the account that follows is a bit of a combined effort with Joe, and it also draws to some extent on stuff we only learned later.
Dr A, we were told later, is one of a very few orthopaedic doctors in the UK who are not surgeons but physicians, and his approach to rehabilitation from injury is at the cutting edge of medical science.
He asked a few questions and carried out some simple tests. Then he said a few words, which were, for us, a turning point.
He said: ‘Your brain doesn’t know where your back is.’
He told us that the the neural pathways linking my brain with my muscles had stopped working. For the next fifty-five minutes he gave Joe and me a lecture on backs, brains, anthropology, muscles and much else besides. And this, as we remember it, is what he said.
A few million or so years ago on the African savannah, protein was a scarce resource for our distant ancestors and not to be wasted. The immensely strong core muscles that wrap around the spine and support the torso consume very large amounts of protein in order to maintain their strength — without them you could not stay upright at all. As Chloe, my physio, later said, “Without your muscles your bones would fall on the floor”! The physiology of ‘core stability’ muscles is quite different from that of ‘mobility muscles’ — the muscles that control and move your arms and legs etc. — because their function and purpose are different. Although we are normally quite unaware of them, these core muscles are perhaps the most important we have, and give us most of our strength.
The age of around twenty-five was — and still is, physiologically — a significant watershed. In the past most people would have reproduced themselves by then, so, according to Dr A, in evolutionary terms individuals over twenty-five are more expendable. For a younger person who suffers an injury, growth hormone automatically kicks in to rebuild the muscles, a protein-consuming process; however, for a person over twenty-five years old the injured core muscles need only to weaken by five per cent for the brain to decide that this individual is expendable; and badly injured core muscles will not recover. They will weaken and deteriorate and, in the past, the person would probably die as a result of their injury. In other words, in the distant past, evolutionary imperatives dictated the physiology of who would survive and who would not; and that physiological imperative still dictates our bodies’ response to injury today.
A happier aspect of all this is that our common expectation —that we necessarily get weaker with age — is a fallacy. Kenyans who run long distances throughout their lives show only a ten per cent loss of fitness by their seventies. Muscles that are kept fit remain strong.
Core stability muscles have long been known to exist, but their function was not understood until American researchers carried out tests comparing people with and without back pain. They found that everyone they tested who had back trouble also had weak core stability muscles; and conversely those with strong core muscles did not have back pain. Subsequent research, particularly in Australia, has shown how essential these muscles are to maintaining good posture and back health.
If the core muscles around the pelvis are weak, muscles higher up the torso will be forced to compensate and cause strain and then pain which cannot be resolved without rebuilding the weakened muscles in the pelvis. If core muscles remain weak the body will become distorted as inappropriate muscles become overdeveloped.
I realise now that my pelvic muscles had been weak for years and, as a consequence of the chiropractic injury, the core stability muscles at the top of my back had now packed up altogether. My upper body mobility muscles had kicked in to compensate in a limited way, which explains how I was able to carry on at all, but also accounts for the extreme weakness.
The core stability muscles cannot be consciously controlled by the brain, nor will a drug put them back in working order. Dr A told me that I would have to rebuild my body by rebuilding these muscles. There was no other treatment for my condition. The good news was that recovery was possible. The bad news that it would take four years. Also I would have to do an awful lot of hard work. I would start by working on the most important core muscle, the transverse abdominus, which wraps around the lower abdomen and pelvis. I would then have to rebuild in stages up my back. As a consequence the neck/shoulder area where the chronic weakness was would have to wait until the lower areas had gained significant strength.
There were two aspects to my rehabilitation. The first involved carrying out exercises which focused on locating and rebuilding the core muscles, exercises that would also rebuild the nerve pathways, restoring the link between brain and muscles. Also there would be cardiovascular exercise — mostly power walking, with a bit of jogging (we also bought a pukka exercise bike), pushing the body hard. The importance of cardiovascular exercise is that it is the only way for someone over 25 to generate growth hormone for muscle regeneration. As I was now so very weak, I must exercise enough to produce growth hormone while not tiring the muscles and exacerbating the damage. In my case this was a very fine balance as it turned out that I did not have the warning pain signals that most people have. During one examination Dr A pressed on a small area of my back, and Joe watched his face redden as he increased the pressure. To his surprise I felt no pain. ‘You are one of the rare people,’ he said to me eventually, ‘who has weakness instead of pain.’ My muscles don’t hurt like most people’s, they just get weak and stop working, which might sound like a good thing, but pain stops people overdoing exercise; I would have to be very careful as I could so easily exercise too much without realising. This would turn out to be a significant factor later when I found myself stumbling into severe setbacks which were to put my recovery back by months at a time.
We don’t know what Dr A thought about the chiropractic treatment that had made me so ill. He wouldn’t talk about it; he clearly didn’t want to get involved in any litigation. He diagnosed the cause of the breakdown as being a consequence of excessive computer work carried out while maintaining a poor posture and without proper back support. He told us he was seeing an increasing number of patients with severe symptoms like mine. His youngest patient so far had been only eight years old. Perhaps he is a pessimist, but he was predicting an epidemic of problems of this sort as a result of people spending long hours at computers while maintaining very poor posture, slouching with a hunched back and head poked forward.
An interesting aspect of this new understanding of the significance of the core muscles, of course, is that ‘manipulation’ of bones and joints will not help solve problems with a person’s musculature. So it is possible, or even likely, that the treatments routinely carried out by many osteopaths and chiropractors may be irrelevant to the underlying chronic problems of many, perhaps most back sufferers. It also explains why these practitioners anticipate, indeed recommend repeat visits — because the treatments they offer are likely to be only temporary in their effect. I think most people would prefer a cure. The release of muscle spasm through joint manipulation may relieve pain temporarily. The patient feels better for a while, and believes that it is somehow in the nature of things that further treatment will be required.
I took two things away from the consultation.
Yes, I could... would... recover.
But four years!
My body, I understood, was not programmed to heal. This long time and all that hard work was all up ahead. Psychologically, emotionally, there was a tough time coming; and what follows is going to be the hardest bit to write.
We got home at lunchtime and I phoned the number Dr A had given us for Chloe, a Chartered Physiotherapist. When he had told us during the consultation that he knew someone really good, we waited to be told that visits would involve long journeys to some distant town; but — relief!! — Chloe worked just four miles down the road. When I phoned there was an appointment that very afternoon. So weary as I was by then, off we went to the fitness centre where Chloe worked. And it was good that it happened this way. In one day everything was turned around and I was starting a new journey. I came home later with a plan to follow: the beginning of getting better.
But it wasn’t easy walking into the fitness centre, seeing all these machines and active, healthy people. Briefly, in the reception area, I made a good job, I think, of faking being a normal healthy person; but when I got into Chloe’s consulting room it all broke down and I gave way — because there was now someone who could help me and I wasn’t alone any more — to the anguish — and the anger — of the preceding months.
Chloe saved my life. Much later on I told her that.
And there wasn’t much more I could say of gratitude.
She was kind. She was gentle, she was endlessly patient. Constantly reassuring me, encouraging me, not letting me get disheartened, never letting me believe I would not get better. She was — is — also a very good physiotherapist, intelligent, thoughtful, caring and committed.
When she said to me, months later: ‘I hope you don’t mind me saying this, but, in seven years of private practice, no one has come through my door in as bad a state as you,’ it was actually sort of reassuring. So many people had supposed I was faking it, imagining it, that I was neurotic, so that sometimes I felt I had passed into some parallel universe where something horrible was happening to me which it was impossible for inhabitants of the usual universe to apprehend.
I did ask Chloe later how it would have been if I had failed to find a diagnosis and treatment. She suggested that some sort of limited healing might have taken place, but given how my body felt by this time I think I would have remained very disabled.
Putting together Dr A’s account of the physiology with what I actually physically experienced I could understand that my muscles had effectively become too weak to hold my body together properly, especially in my upper back and neck. That, though it’s hard to describe, is exactly what it felt like. My bones, the vertebrae in my upper back and neck, felt loose and unstable, and the sensation of instability and muscle collapse was spreading down my body and I had even started to feel that my hip joints were beginning to lose stability. I couldn’t lie on my side; if I did, then, after a short time, there would be weird and frightening sensations. So I lay on my back like a corpse; and my head had to be propped on either side to prevent it lolling over when I was sleeping.
While I had been deteriorating I had been taking myself off for walks. And I had the right idea as it turned out. But the walking I was doing — maybe half a mile twice a day out in the dreary November fields — had been slow and tentative. I was afraid of falling over and not being able to get up again and I would hide if I saw anyone coming because I felt so feeble and foolish. I described this walking to Dr A.
‘Trash exercise’ he called it! It could only have made me worse.
And in fact I knew that it did, but didn’t know what else to do: I believed that I ought to move or I should just lie in bed and all my muscles would wither. What Dr A told me to do instead was to go out three times a week and walk as fast as I could for at least 10 minutes.
So off I stormed every other day up the steep hill outside our house. Maintaining a raised heart rate would [among other benefits at a biochemical level that Dr A said were at the cutting edge of medical knowledge and too complex to explain] stimulate production of the growth hormone that would help my body to mend. This was good psychologically as well. I looked forward to doing it and had not to mind what people thought who saw me charging about looking a fright with my six-month uncut hair often unwashed and greasy. And if I did fall over, well — some passing person would have to pick me up and sort me out!
Chloe also started me off straight away on my muscle re-building exercise programme, so this gave me something else positive to do, though at first it was only about three minutes, three times a day.
It was late in November now. I should have felt so much better. The severity of my condition had been acknowledged. I had support from first-rate medical professionals whom I liked and respected. I was at last starting a real journey to recovery.
But it wasn’t going to be that simple.
Instead I began to slide into darkness.
A profound depression came over me. For the first time in my life I really wanted to die. I have been depressed in the past, in my teens, and again in my early 30s after a relationship ended; I have been very unhappy and thought of suicide. But nothing like this. I had never experienced anything like this. I now know why people kill themselves — in spite of the support and help that may be offered. This dark place; this deep dark well in the mind where there is no light and no hope is something that can’t be endured for long.
I got on with the exercise I had been told to do. I couldn’t read, or watch television: apart from muscle weakness, as a consequence of the damage to the T1 vertebra, my eyes were now affected in a most peculiar way so that I couldn’t hold my gaze looking at the screen even for a few seconds, without an acute and horrible sensation shooting between my eye sockets and the base of my neck.
Joe was at work all day leaving food prepared for my meals. I had got past the spoon-feeding stage and could lift food to my mouth though I couldn’t cut it up. There was Radio 4. God bless Radio 4 and all who sail in her. Thank you Melvyn Bragg for ‘In Our Time’, forcing me every Thursday morning to rise above my fear, to blank out the dark, and listen to this programme because it was just so interesting. And the newsreaders and continuity announcers: those steady reassuring, unchanging voices marking out the day (and I know this sounds daft but I could see them all standing on clouds, dressed in white and wearing halos — yes they were already angels, every one).
I found I couldn’t cope with any dark subject: death on the news (endlessly); even a children’s ghost story I had to turn off. I was shrouded in fear, like grey rags that I trailed everywhere. I felt that I was myself just a grey and tattered ghost, every morning waking up at the bottom of a deep and lightless well. My bedroom became a refuge I was afraid to leave: even a journey to the kitchen was an ordeal. I struggled however, and learned that if I made myself get up, have breakfast, move about a bit, the darkness, by midday, would start to shift; but each new day seemed to involve a colossal, monumental effort of will.
But — bad luck, good luck — I was lucky.
Around mid-December the doctor prescribed anti-depressants; it took a while but they began to work. Better than this, I am lucky enough to live where there are a lot of retired and semi-retired people. So I organized — with Joe’s help — a rota of visitors, and it was like this: Lisa on Monday morning, Beth on Tuesdays, Richard, my brother, on Tuesday and Wednesday afternoons; Jane, my cousin, on Thursday mornings and Helen on Fridays. By 11 am my mind would begin to clear. I knew that no visitor would come and keep coming if I couldn’t shift the gloom, so I had to shake myself out of it: be positive and welcoming. With a bit of help, I could produce coffee, and each visitor stayed a couple of hours. Only with Richard, being family, did I really let out more of what I was really feeling, and he, perhaps, is the person I am most grateful to: sitting with me from 2.30 till 5.30, two and sometimes three afternoons a week. Helping me to get through what was the most horrible part of day: the gathering darkness of the December afternoons chiming in drearily and insistently with the blackness in my mind. Remembering Dr A’s account of our distant ancestors, I think maybe that I was lying, helpless, alone and in the dark, on some African plain, waiting for the hyenas to come and get me. It was more awful, even aweful, than I can describe or explain.
I couldn’t sit in a chair so I did my entertaining lying flat in bed. My jaw muscles were very weak and talking in that position was difficult; and the sick room can’t have been a very cheery place but we managed and cheerfulness was the order of the day. I was, still am, grateful beyond words to all my visitors. I would not have got through it without them.
By Christmas 2002, I was able to sit again in a chair, one of the enormously expensive, but stylish, back supporting chairs we bought from an excellent specialist shop in Amersham. David, the proprietor, is another person to whom I am grateful. He had himself had a horrible double whiplash injury twelve years earlier, which is why he had opened his shop. He was the first person to fully understand my state of mind: the obsessive fear and anxiety. He spent a long time with me, talking, but more importantly listening. And at last here were some chairs I could sit in. I would be able to leave my bedroom at last and make a brave foray to the sitting room, to talk to my visitors while sitting upright. It was surprising how much courage it took.
By the end of January I could watch television for short periods and there was a wonderful moment in mid-February when I began to be able to read again — only a sentence or two in a newspaper to start with but soon it was a whole page and now I was really on my way! I was driving the car again in April and hoping to get back to work in the autumn.
As it turned out, this was a false dawn. The psychological impact of what had happened to me during all those awful months didn’t shift so quickly. When I strained my back in May 2003, I panicked, couldn’t cope, it was as if there was a furious, self destructive demon in charge of my mind. I could not control my fear and began a dreadful slide back down into weakness again. By August I had lost almost all my strength again, could not read or watch television, and had to start a second long journey to recovery. By the spring of 2004 I was again much better; but in the autumn of that year I had another setback.
I seem to have pushed a very large boulder up a very steep hill three times now and twice I have lost my grip just as I thought I could see the top of the hill, and the boulder has tumbled back down to the bottom, and I have wearily had to set my mind again to pushing it back up again. I could, but won’t, write about the first setback — how ghastly it was — how exasperating it must have been for Chloe, yet how she, metaphorically, held my hand through the whole thing, so that when the second setback came I was strong enough to cope on my own.
It is more than two years now since that last setback and I am in pretty good shape though not entirely recovered. I think, I hope, I have made a psychological and emotional recovery now, that I feel better in my mind and that I am letting go of the sheer horribleness of what happened. Writing this account has helped with that.
I now have (apart from the very top bit) a straight strong back, my ‘dowager’s hump’ (hurray) has gone, and, at 60, I am probably fitter and stronger than I have ever been in my life.
What remains to trouble me is that I have never had a proper diagnosis because health professionals don’t like getting involved in litigation. Dr A blamed computer work and refused to talk about the chiropractic treatment. It is true that I have had a long history of back problems going back to my twenties, and I know that computer work was an exacerbating factor, though I was careful to keep a straight posture and use a good chair. However I have no doubt that the chiropractic treatment was the cause of the acute condition that developed, and I did overhear a conversation that I probably wasn’t intended to hear, that confirmed this.
It is interesting that none of the practitioners I had seen in the past — and there were many, both chiropractors and osteopaths — ever suggested muscle weakness as the underlying cause of my problems, although it is quite clear to me now, after all the exercise work I have done to build up my muscles, that that was the case. Did they really not know, with all their training, that focused exercise could restore strength to my enfeebled muscles, providing a permanent solution to my ‘back problems’? Ted used to refer scathingly to ‘soft tissue work’ and seemed to feel that it demeaned him to do it. He prided himself very much on his chiropractic skills. I think that at some time he must have discovered that he had a real knack for joint manipulation and decided to make a career of it. Looking back at his method of manipulation, it was actually quite violent, which I suppose is what his colleague meant by ‘old fashioned’.
Chloe had an interesting angle on this: osteopaths and physiotherapists have a similar training and treat similar conditions, yet osteopaths spend most of their time manipulating joints whereas Chloe only spends five to ten per cent of her time manipulating joints. Chiropractors are even more highly specialised than osteopaths in joint manipulation, and from my experience appear to work almost entirely by rote and have difficulty seeing beyond their narrow specialisation. Chloe spotted my ‘flying shoulder blades’ — indicating chronic long-term loss of upper back strength — immediately, yet no previous practitioner had ever commented on this. If I had known Chloe existed and had gone to see her at the start of all this, then I imagine she would have made a proper diagnosis of my condition at the time,and either referred me to Dr A or dealt with it herself if that had been appropriate. I expect that from that point recovery might have taken several months of exercise and physio, but I believe that I would never have descended into the severe illness that was triggered by the inappropriate chiropractic treatment. On my first visit to Chloe, she quickly discovered what I will call (in ignorance) a point of dislocation half way down my spine, which had caused a lot of pain and discomfort for a long time. Ted made many attempts to manipulate the joint and each time it flipped back after about half an hour. Chloe spent maybe 3 or 4 minutes working the muscles, using massage to release the acute muscular tension around the joint and I had no more problems with it.
One of the issues for me now, is having a health problem without a name. There is no adequate, quick answer when I have to ask someone to carry something for me, or lay claim to the most comfortable chair, because ‘I am recovering from a back injury’. ‘Oh, what happened to you?’ people ask sympathetically. ‘It’s too complicated to explain,’ I reply briefly and snubbingly — and I can’t explain. It takes far too long and comes out incomprehensible. On rare occasions when I have, foolishly, tried to describe my experience, I go into a sort of unhappy obsessive trance and can’t stop talking. I have watched people glaze over and beat a hasty retreat, leaving me feeling rather chewed up and small.
It makes you reflect on the importance of the giving of names, as if an un-named thing cannot be seen or properly known.
And yes, in case you are wondering, I would have liked to sue the chiropractor. The lost income over four years obviously runs into tens of thousands of pounds and the consultant and physiotherapy sessions probably cost over £3000 though I’ve never actually added it up. Also there was the stress and distress that both Joe and I suffered for months on end. But without the support of the consultant and the physiotherapist I don’t suppose I would get very far.
Joe’s dedication to me and to my recovery has never wavered. Jim (his son) asked him once if he had thought of leaving, of walking out. ‘No,’ he said, after a short pause, ‘no, never.’ And I remember when I was at my worst, wondering if he would leave and understanding perfectly why he might, and not blaming him, and trying to work out how I might cope on my own when I was so ill and disabled. I know he was often quite as scared as I was, and the burden on him was very great; but he has been totally committed to my recovery, and I would not have been able to struggle through some of the impenetrable barriers in my mind without his love and support.
I have been on an unexpected journey of discovery. My experience raises a lot of issues that should be interesting to anyone with back and muscular-skeletal problems. There is little information available and most people are quite in the dark about the nature and cause of their back pain and what treatment will or will not be effective . Bad backs prevent people from working and are expensive for the sufferer and the economy. chiropractors and osteopaths — the back manipulation industry — leads sufferers to believe that back pain is a bone thing when it is likely in most cases to be a muscle thing. Bones are hard intractable things whereas muscles, you can feel yourself, are malleable. I also wonder how many knee and hip ops might be avoided if people got their feet sorted. GPs appear to know little about the cause of back pain and even less about feet! I could go on about feet and the positive whole body effects of treatment by a properly qualified podiatrist who specialises in biomechanics.
How can effective back treatment be funded? How can patients be persuaded that it works? The most important part of my treatment — the exercise — was not “funded” of course, I just got on with it, but then I was highly motivated, I was very ill and believed it would work to get me better. I know from my own acquaintance that many people just get resigned to having an intractable problem; the sort of muscle building I have done is a foreign land that they are not interested in visiting — and the apparent consistent failure of osteopaths and chiropractors to provide long term healing must feed this defeatist mindset. Should GPs prescribe Pilates instead of painkillers? Properly taught, Pilates really does really work in my experience. Would people need a financial incentive to join an exercise class? Well, they would if they didn’t believe that it would help. Firstly GPs need to know more about all this; and a good physiotherapist is a pearl among pebbles, but how do you find one? My consultant said that in the NHS there are some very good physios, but also many “who don’t know their heads from their bottoms” which is why he referred me privately to someone he had confidence in. Another medic has said to me that many of the best physios go private leaving the less good in the NHS. Failing the NHS, find a chartered physiotherapist. The Chartered Society of Physiotherapists is an independent body that has reliable, professional standards.
This is the simplest and most telling result of my muscle rebuilding programme, my long hard journey to recovery: for many years before I became ill, my weak back meant that I would tire after five minutes sitting without back support; now I can work at my computer, sitting erect, without support for a full day without fatigue or any aches or pains at all.
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