I had a serious physical illness which, together with the treatments affected my nerves, nervous system, my brain and mind. Obviously I’m not the only one.
I found myself travelling in a rather nice train through northern Italy with delightful new friends, one of whom kindly offered to give me a good shave. Unfortunately he had never done this before and I ended up with blood all over my face. Another passenger, who turned out to be an American pilot on leave, offered to clean me up and arrange for me to get shaved every day by a member of the train company.
Then we pulled into an ancient city and our group was merged with a bunch of women from Nepal. We all had a party in a hut in a humid jungle but we only had one record to play, the Ink Spots’ 1940 recording of Java Jive! The song hung around in my brain for quite a while till I had to track it down.
Hallucinations aren’t fun
This is just one of the many hallucinations I had in 2020 as a result of developing an illness caused by one or more infections. The condition featured fevers, delirium, seizures, and hallucinations; also impaired cognitive ability, and damaged memory. I found that hallucinations weren’t fun, someone else was writing the scripts and I was forced somehow to go along with whatever was going to happen. Some hallucinations were downright frightening, and more than once I felt that I was unable to breathe. Another frequently-run story or scene required me to attend to the recently dead in an old house in London’s East End – and I felt half dead.
“There is a condition worse than blindness, and that is, seeing something that isn’t there.” – Thomas Hardy
It seems highly likely that the hallucinations occurred mainly when I was semi-conscious or unconscious, though possibly not always. As I was starting to get better, I arranged with my wife to use an agreed word if I talked to her on the phone while I was still in the grip of an hallucination. We found that this helped to ground me in the real physical world.
But I now shudder to think how I might have presented myself to doctors and other hospital staffs while I was in the grip of an hallucinatory fantasy. How I might have unwittingly misdirected them or gabbled about things that weren’t actually happening.
Another lesson I learned was that hallucinatory happenings can be profoundly absorbing, to the point that they crowd out the real world. For I’m afraid that some of these fictitious stories were actually less frightening than what was actually going on around me, and indeed to me. This is, I think, a truly dangerous situation and it represents a pretty big challenge to medical doctors, nurses and other healthcare staff. After all there must be numerous people like me whose cognition, memory function, and emotional responsiveness were impaired as a result of chemical and other physical changes wrought by infections, physical traumas, or other injuries to the brain.
The most vulnerable
There must also be a lot of people with mental health conditions, or personality disorders perhaps, but who are in a hospital primarily in order to have physical ills treated, Covid for example. Also, I wonder how many people are in general hospitals because of the onset of dementia. Certainly I was aware, that in one general hospital ward, I was in there were quite a few older patients who appeared to have experienced a total break with reality.
I think patients like these are among the most vulnerable of people and, as such, they deserve appropriate support and medical interventions. But my hospital experiences lead me to conclude that many doctors and nursing and healthcare staff aren’t equipped to help adequately. I’m also aware now that my only contact with mental health specialists occurred when I took a new anti-epilepsy drug which had the effect of heightening my suicidal thoughts.
Perhaps the problem lies with their training, a lack of proper resources, or maybe their expectations. Certainly, in a least one ward, I was very aware that staffs’ expectations of patients’ ability to get well was cruelly low. To this can be added a strong sense that the ward, and hospital itself, were beleaguered and stressed by the consequences of inadequate resources. I leave others, who are better placed than me, to comment of the adequacy or otherwise of these staffs’ training.
Trivial?
As with other aspects of my illness and treatment I found, to my subsequent surprise, that some of the most mentally distressing and unhelpful episodes arose from seemingly trivial events. For instance, I had a brief row with a junior doctor who’d borrowed my phone charger. The row was silly and unnecessary and arose because I’d misheard him. I did tell him that I had very slight age-related hearing loss and had misheard, but he then spoke immediately and loudly to another doctor about how difficult it must be for patients who are profoundly deaf! This silly man also appeared to have no idea about how wearing a mask and full-face visor can muffle voices. I was ill and in a noisy ward – did I need an antagonistic and patronising doctor as well?
I’m afraid that a few nurses upset me too, as did some healthcare assistants. For example I remember that on many occasions I hallucinated that my legs were shrinking by about a half; I both saw and felt them shrink. During some of these horrendous episodes, I recall that I asked them to help me get out of bed because my legs always seemed to return to their original length once I was standing. Oh dear, I still hate to remember this – my memory suggests that some of the staff found this delusion quite amusing…
On the other hand, I remember a healthcare assistant in another ward telling me on more than one occasion the name of ward. He told me to say the name to help ground myself, especially when I was in the midst of the weirdest hallucinations. He was right, this simple device, so friendly and helpful, really worked.
Testing times
I should mention the tests used to measure the extent to which patients were confused, because they came to be major emotional features. In one ward in particular, in which there were many older men, these tests were really feared because they were seen as the gateway to leaving the hospital, or an insurmountable barrier to discharge. I found that the tests were all very similar and were basically memory tests: what’s the Queen’s name, what year is it, what’s today’s date? You had to answer each question promptly mainly, it seemed to me, because the junior doctors who administered them were very busy. In fact one of them admitted to me that he couldn’t have handled the test as well as I had in the time!
But, although they were real instruments of fear, I found that there was little or no understanding among medics of their impact on patients’ mental health and wellbeing. I ceased to fear them once I started to get well.
I’ve found that now I’m out of hospital I still have to work to put my hallucinations into their proper place, I’m also having to learn how to handle the physical aftermath of the illness and the treatments I underwent. There are still ‘bad’ days, days when I feel physically unbalanced and where my brain seems unable to get my visual acuity working 100 per cent. There is also the occasional bad day where numbness in some fingers makes it difficult to do up my shirt buttons. There’s the occasional episode featuring mood swings, they last for a few hours – basically I swing from feeling clever, loquacious and speedy, to slow, incapable, and terribly bleak.
Thankfully these episodes and bad days are now diminishing in every way, though even nearly nine months on from hospital discharge I find that, when I’m very tired, the nerves in my left hand don’t seem to work very well. And although I don’t know if I can speak authentically about my brain, I sense that it’s a little bit damaged.
It seems likely that I will self-repair in time, but I now know that at least one of the drugs I was given caused some of the distressing effects and my eyesight really was affected by the illness. So I wish medics had paid more attention to my nervous system, to my brain and to my mind at the time, and afterwards during recovery.
‘For a man of your age’
Finally, psychologically this illness and the months of treatments and being unwell have wrought a change, or rather changes. As a result I feel my age a bit I’m afraid, but equally I’m really resentful and angry about any instances of ageism I see or hear. I resent the fact that I was so unwell, but equally I resent the casual ageism that I experienced coming from health staff, including unfortunately some of the doctors.
But above all I don’t want to be a patient anymore, I just want to be a person again.
“Never go to a doctor whose office plants have died.” – Erma Bombeck
