I am constantly surprised how incompletely people recall their illness once they have begun to recover. Perhaps the most dramatic example I have come across was a young man in his twenties who was admitted to our Intensive Care Unit with a severe, life threatening soft-tissue infection of the floor of the mouth and the neck, with involvement of the mediastinum. He had classical necrobacillosis (link,) caused by mouth anaerobes, notably the fusobacteria group. These bacteria produce powerful toxins which include a very potent endotoxin. We aspirated fluid from his swollen neck and immediately gave a combination of intravenous Co-amoxiclav and Metronidazole. We grew Fusobacterium necrophorum from the aspirated fluid; this strain, though resistant to penicillin, was sensitive to the antibiotics given. He made a speedy recovery and was soon out of the ICU. After a few days we gave him oral antibiotics. I visited him daily, and he, I think, looked forward to my visits. He remembered my name from day to day and understood the nature of his illness. He had a keen and active mind, and asked me questions about the bacterium which had caused his illness. He was amused to find that its name, translated, means 'spindle-shaped rod, bearing death'. He made a full recovery and started back to work; he was a foreman at a factory which was then a major employer in Bedford. Medical Microbiologists do unusual things; my work has taken me to the local abattoir and to Her Majesty's Prison, and, a year after the above episode, it took me to that factory. I was taken round the precinct by the company doctor. One of the first people I saw was the man who had had necrobacillosis. I asked him how he was. He looked at me blankly. A brief conversation revealed that his entire illness had been expunged from his memory. 'I believe I was in hospital for something,' he said. This memory-loss seems quite common. How much of it is due to pyrogens and cytokines interfering with the hippocampal allocation of memory and how much is due to a psychological withdrawal from the edge of the existential cliff-face is difficult to determine. I guess the latter may have a larger part to play; he had, after all, recognised me from day to day at the hospital, but he clearly found my later allusion to his illness uncomfortable.
Persons with chronic infection with C. pneumoniae often seem to experience this memorial mis-reading of their illness. Sarah, as her MS became worse, developed thought-processes which she now can't remember; now, in fact, the final months before treatment began are a kind of blank to her. I remember that period very clearly, and even now find it terrifying to recall. Like David Caspar Friedrich I can go very close to the edge of those existential cliffs (link), and can look down with trepidation but without vertigo. But I am amazed at how quickly people can subvert the realities of the past. I recall a man in his mid-twenties who had MS; it had begun in his teens with bilateral optic neuritis following a respiratory infection. He woke up unable to see. Although he recovered his sight, progression set in early; by the time I saw him in 2004 he was able walk no more than ten paces unaided. He made a very good recovery, and after only a year could walk several miles and could run. He and his wife were naturally very pleased with the completeness of his recovery. Yet, a further year on, he had largely forgotten his disability. 'I can't really think why I took the treatment,' he said. What astonished me was the fact that his wife agreed with him. 'So you don't think the antibiotics have helped,' I said. They both agreed that they hadn't. Then I asked him how far he could walk. 'Several miles,' he said. I reminded him that, when I had first seen him, he could manage no more than ten paces, and those with a laborious, wide-based gait. They both looked at me with a kind of shock. 'I had forgotten that,' he said.
This is a long haul. Sarah is still finding improvements three and a half years after starting treatment. The most recent is the disappearance of motor fatigue in her right hand; this had been evidenced by a decline in strength during sustained extension of the fingers. Six months ago extension could not be maintained. No fatigue is now apparent. (Motor fatigue is common in progressive MS, and, in the natural history of the disease, recovery from it is rare.)
I think the purpose of this essay is to draw attention to the frailty of memory, particularly here where treatment is lengthy, and how the very realities of the past are altered by the more immediately accessible reality of the present. I now recommend that anyone thinking of undergoing treatment for MS or CFS should carefully and objectively chart their disabilities before beginning. In the case of MS the EDSS is useful; it has been criticised for placing a great deal of emphasis on mobility, but I think that Kurtzke knew what he was doing. Disorders of mobility are very common in MS; the motor tracts run for a very long distance within the CNS. Walking is a complex process involving many different pathways. Why should such charting of disability be important? Because modified hindsight can cause people to abandon treatment prematurely. I have seen this myself, and, regrettably, in persons who were actually doing well.
[A humorous footnote, which demonstrates the subjectivity of memory. When I lived in Oxford, my mother phoned me, asking me to buy something she needed from a certain store, Bright's. I agreed. I wandered all through the city looking for this store. Eventually I asked its whereabouts of people who looked like long term residents. 'Bright's? Why, In Cornmarket Street.' A finger was pointed in right direction. I walked to Cornmarket Street. No Bright's there. 'Bright's is in Broad Street, next to the White Horse.' It wasn't. 'Ah, Bright's, h'mm. Next to the typewriter shop in The Plain, I'm pretty sure.' I knew it wasn't there. 'I may be wrong, but I think Bright's is in New Inn Hall Street.' No, I had just walked down that street. And then it came to me: there is no Bright's in Oxford. Bright's is a Bristol store; it is situated in Queen's Road. My mother had momentarily forgotten that I had moved from Bristol to Oxford. And all those helpful people in Oxford had manufactured a false memory in answer to her momentary forgetfulness.]