INERTIA#2 (Or: Do I Dare to Eat a Peach?)

As that eminent sage, diarist and philosopher Bilbo Baggins put it: “well, I’m back”. And the topic is still “Inertia”. Obviously. My apologies, but to be fair I did promise a second blog on the subject, and I like to keep my promises. Let me first congratulate myself on the brilliant idea to procrastinate over the next sparkling entry and remain immune to criticism for choosing the same title. More seriously, it is delay in a negative sense, linked to lack of self-esteem, nervousness and an increasing lack of teamwork between me and the soggy, soapy sponge bag that claims to be my brain; an organ that is supposed to be the rational, thinking part of me (the ego in Freudian speak). If I am forced to provide a candid, honest end of term report on Johnny Brain’s work this term, then it will far from glowing. Must try harder; stay behind after thinking; would do well to concentrate more rather than disappear down rabbit holes: that sort of thing.

Back to reality, or at least as close to reality I can achieve. Some news first of all; known by many of you already. But for those of you who are new, I would like to confirm that I am no longer working. I’m still employed by my company but am furloughed (sort of) via an external company that manages employees with long term illnesses. This has come as quite a shock. On the one hand, I feel relieved; on the other, I feel as if I have lost part of what makes me who I am. Not logging in to my employer’s and our client’s network and web sites on certain days and at certain times feels really weird (I do log into my employer’s site very occasionally, but only to see if there was anything urgent. I also miss seeing, working with, and exchanging banter with my friends and colleagues (even though F2F contact was become scarcer thanks to Covid; but there were still online meetings and phone chats. I can even get almost nostalgic (note the word ‘almost’) about the quotidian journey to and from work: it was a cloak of purpose, meaning, and self-awareness. In my more rational moments I remind myself that it was quixotic and mendacious to think I was capable of functioning at the same professional level as before my illness; I would have been a liability to myself; my employer; and the client. I have crossed my Rubicon. Alea iacta est.

It was the right decision, however, and the positives outweigh the negatives by a country mile. Talking of miles (neat segue there), the rapid evaporation of work imperatives enabled my wife and I to go away for a week’s holiday, for example. I started writing this particular blog entry in St. Mawes in Cornwall a few weeks ago, on a rainy day. Having had two holidays cancelled in 2020 thanks to Covid, assisted by political vacillation and a lockdown strategy that can only be described as a game of political blind man’s bluff (not helped by four different countries having four different sets of rules) meant that we had to be lucky with both availability and mobility, and of course thousands of other UK families were thinking along similar lines. My wife is nothing if not tenacious, however, and luck was made redundant through her assiduous and careful evaluation on the web of what was available and when. As always, she came up trumps: a small but lovely fisherman’s cottage in said resort; dogs welcome; the village had lots of restaurants and shops and views across to the headlands of St. Anthony’s and Pendennis (where Falmouth’s castle stands); and only a few minutes’ walk to the harbour, beach, shops and pubs.

We hoovered up our youngest and his girlfriend from uni on the way down so they could share the first few days with us as a long weekend before returning by train on the Monday. No one should have expectations of good weather in Cornwall in late September, but we were very lucky - we managed to plan and time our visits and activities around the scheduled forecast and it too kept its promises. We were on the beaches and the coastal paths in the sunshine on most days, and the highlight of the week was a visit to the Lost Gardens of Heligan. It was only on the Friday that the weather thwarted our plans.

As we head into autumn, meteorologically, physically and mentally, and the leaves become shields of burnished red, gold and bronze, I wanted to talk a little more about the illness and how I am coping. I am conscious of how much time has elapsed since I last went ‘public’, and jokes and excuses about fatigue, fear, inertia, lack of confidence, and a recalcitrant brain only go so far. I would like the blog to be both pleasurable and informative, to me and its readership; but of course it has a serious side too. I think friends and family like to understand and empathise with how I am coping with Alzheimer’s, as well as appreciating the humorous side of its manifestations (I hope).

I think I mentioned before that the diagnosis of Alzheimer’s took me completely by surprise, and the only word I could summon up as we sat in the consultant’s room in the London hospital was “wow”. At that time I honestly did not pay full attention to the consultant’s explanation of the symptoms and the outlook generally. As a result I have not really suffered from depression post diagnosis in the manner that led to my nervous breakdowns a few years ago; nor have I adopted a solipsistic, selfish standpoint regarding the prognosis and its “terminal” conclusion. I distance myself from it, and I am more upset and troubled by the impact on friends and family. As an avid student of lexicology I tend to take refuge in humour, metaphor and euphemisms for the benefit of myself and others.

To answer that “final question”I have become fond of words like decease, demise, dissolution, end, exit, expiration, expiry, fate, grave, great divide, passage, passing, quietus, sleep, curtains, Lethe, the underworld, slipping away, resting in peace, the bourne from which no traveller returns, departed, shuffle off this mortal coil, the last inn, number being up, time being up, vale (Latin not valley), the last walk, resting in peace, camping in the Elysian Fields, curtains, gave up the ghost; lost one’s battle, “I shall depart into the West”…

I think the increased awareness of my own mortality (and the vocabulary to match) is not because of the symptoms or the life expectancy of 10-12 years (which still seems a long way away), but because the symptoms seemed to have speeded up ahead of the predicted curve. Which does strike me as being rather unfair. Stick to the script, guys. And given that one of the drugs I take is meant to slow down the arrival and progression of symptoms, then it’s even more unfair.

In the short term the symptoms have included horrible experiences I call “brain freeze” - an unsettling fear and pounding in my head that lasts for a several seconds that seems like an eternity. Fortunately I haven’t had one for several weeks. I generally wake up each morning with my nervous system transformed into a Strictly Come Dancing episode - lots of neurons bouncing around the cerebral dance floor, some days smoothly and beautifully (which is not normal but is actually quite pleasant if a little unsettling); on other days however the choreography gets thrown out out of the window and disintegrates into neurons colliding with, and stamping on, other neutrons, which is disquieting at best and frightening at worst. It reminded me (younger readers, you’ll have to look it up) of a TV programme called “The Prisoner” which started in 1967 (the year I was born). I won’t bore you with too many details, but it concerns a British intelligence agent (!) who is abducted and incarcerated in a mysterious coastal town (actually Portmeirion in Wales). Anyone who attempts to leave is pursued by a huge, white, bouncing balloon that forces them to turn back. (OK, that sounds ridiculous but it petrified me as a small boy - the line between the risible and the frightening is exiguous). Even when such episodes abate or disappear, I am still nervous the majority of the time, the nervousness seemingly wrapped in foil to keep it warm. I also have chilling moments when an image, recollection, or event pops into my mind, but before I can identify it, it immediately elides into oblivion like a cerebral firefly, but makes my heart heave into my chest and leaves me petrified for a few seconds.

Fatigue has also increased markedly. I am exhausted when I wake up, whereas before it would catch up with me during the day like a child at school, and by the early evening I am struggling to stay awake. 9.30 is usually the latest I can manage before hitting the sack (not to mention punching the teddy bear in frustration). Domestically I try and do as much as possible at home whilst I still have the energy and strength to do so, overseen by a series of lists (although even here I can forget, if I don’t consult the lists often enough - when such mistakes become egregious, a new surveillance routine will be required). I don’t know whether the fatigue causes the nervousness, or the nervousness causes the fatigue…let alone perhaps the drugs are responsible for either/both?

I try to find ways to take refuge in the days and nights. By day I see the world perpetually cloaked anew; rain refreshes as well as repels: it flows and we flow with it. All night I sleep in Elysium. When the sun is generous with its presence, I can melt into its blue; on a clear and sunny day, clouds seem dressed in soothing white; I see natural shapes and promises like balm in transfigured drops of moisture; life is fresh, anointed, clean, promising, gentle; we walk along cliffs and marvel at the ungraspable millions of years of ocean and tides and eyes and those who walked before us. It is however more frequently the darker admonitions of my brain break in: I forget so much but my brain is infuriatingly and reliably accurate in its recalling of diagnosis and prognosis, however much as I would want to forget, or at least question, its warnings..I know my brain is only just doing its job (for once) but there are times when the reality is delivered too starkly; counselling me to face to the darkness and uncertainty that lies beyond the horizon. I find myself railing, almost child-like in my tantrums, against the unfairness of this situation, like Lear on the heath (and I have done enough walking with friends over the years to know what it is like, standing on a blasted heath in the midst of darkness and foul weather!). All night, however, I sleep soundly in Elysium…

Nervousness and confusion and fears about the future can be extremely debilitating, as it is for the eponymous Prufrock in The Love Song of J. Alfred Prufrock by T.S.Eliot:

There will be time, there will be time

To prepare a face to meet the faces that you meet;

There will be time to murder and create,

And time for all the works and days of hands

That lift and drop a question on your plate;

Time for you and time for me,

And time yet for a hundred indecisions,

And for a hundred visions and revisions,

Before the taking of a toast and tea.

I daily have more than my quota of indecisions, visions, and revisions. I make cups of tea or coffee and then instantly forget them and even make another (cliched I know but still an accepted marker). That is just one small example. I have difficulty following lists or steps of instructions, ,making cooking an interesting challenge for both me and diners. I have difficulty recalling conversations (including those that occurred a few seconds or minutes ago). Visually, I cannot recall holidays we have taken as a family, or the layout of houses that friends and family live in (including my own sometimes). Names of people I’ve known and spoken to for decades are tricky on occasions. Ultimately I will of course forget myself. Forgive me if I hesitate “prepare a face” to meet any of you: there “will be time for you and time for me”. Prufrock as a character is a prism for both my inertia and my forgetfulness. Eliot’s poem has resonated with me from adolescence through to adulthood, and I have turned to it often for solace, and here for psychological context. Putting aside the failure of his love life described in the poem (in which regard, thank heavens, I am very lucky), it highlights his social awkwardness and difficulty in negotiating the world through which he hesitatingly moves. His inertia, like mine, is prompted by an affliction that is confusing, overwhelming and debilitating: there will be “time yet for a hundred indecisions […[ and for a hundred visions and revisions”. Like Prufrock, my mind swirls and twists in a chaotic, intractable dance, and like him I find solace in less threatening everyday realities, “the taking of a toast and tea” for example. Communication can also be stymied, sclerotic:

It is impossible to say just what I mean!

But as if a magic lantern threw the nerves in

patterns on a screen:

Would it have been worth while

If one, settling a pillow or throwing off a shawl,

And turning toward the window, should say:

"That is not it at all,

That is not what I meant, at all."

I said above that fear, forgetfulness and nervousness are now an ever-present for me. Cause and effect are difficult to separate however. Does the fact that I forget easily make me nervous? Or is it the other way round? And what do I actually feel? My wife asked me several weeks ago “how are you feeling?”. What she meant of course, was “how is all of this affecting you?”. The focus up until now has been medical; it’s the psychological side that I have neglected, whether out of fear or ignorance, I cannot tell. The truth is that I am difficult to read, and she doesn’t know in depth what I am thinking…my thoughts and fears; my avoidance of being led to “the overwhelming question”…My response has often been as flat and unhelpful as Prufrock’s: “oh, do not ask ‘what is it?’: a stalling question to overcome his crippling inertia and reluctance. Small questions become ridiculously swollen, and range from the trivial (“Shall I dare to eat a peach?”) to the sublime:

“Would it have been worth while,

To have bitten off the matter with a smile,

To have squeezed the universe into a ball

To roll it toward some overwhelming question?”

But like Prufrock, I can usually manage to keep a sense of proportion:

“That is not it at all,

That is not what I meant, at all."

I don’t know how many years I have left, only that their sum will be circumscribed. But I aim to make the most of them; enjoy myself as much as possible and lay down as many memories as I can, for me and those I love and those whose friendship I value. In fact the next edition will be a retrospective on the summer just past - and all the positive reasons for making it live long in the memory (for me too, I hope! - although some help may be required) and guide the future. For too many weeks and months I have been ‘looking through a glass darkly’ (Corinthians). I want to live life to the full now that I have the time and the incentive.

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