Diagnosis P1 - It's Always Ourselves We Find In The Sea

I hope the above title for my first blog entry is more than just a catchy headline for a blog about Alzheimer’s. For those who don’t recognise it, It is the last line of a poem by e.e.cummings (full transcript included at the end by way of a conclusion - I should point out that the laissez faire approach to punctuation is reflective of cummings’ lazy attitude regarding capital letters and orthography generally, not mine. Its inclusion will become clear by the end of this inaugural entry, I hope).

Some autobiographical detail about me, to kick things off and also to link back to the quotation and the sea. I grew up in Dover and whilst the town itself was quite nondescript (and I believe it has got worse; please don’t post messages of wrath and outrage if you disagree) I loved the White Cliffs, especially when walking my dog and looking out towards the French coastline (visible in clear weather); it was equally thrilling and comforting coming back from France on a ferry. My father was an engineer on the ferry route to Calais and Boulogne, and as a result a significant portion of my childhood and teenager years was spent on the waves. I am constantly drawn back towards water, and it adds meaning to my memories both before the diagnosis of Alzheimer’s and also following it: many memories have been erased and others are fading into darkness, like sepia photographs.

My memories, residual, clear or lost, are a fillip to me to make the most of time in the days, months and years to come, and to help with embracing (or at least negotiating) the future. I want to squeeze times out of time like a chronological flannel, helping me to lay down new memories and curate older ones for as long as possible. I have discovered mindfulness since my diagnosis, which I heartily recommend as a means of navigating the tides and storms of everyday life; it certainly has helped me to relax and find (or at least approach) the range of analysis and perception I used to enjoy. I had no safety valve before, and thinking or processing information in recent years caused my mind to blow a fuse on two occasions. I also see the road ahead as curating time rather than just spending it. Naturally I want to pursue as many grails as I can in the years left for me, but I also want to explore and manage the odd sensations I regularly experience - well, the positive ones anyway. I’m not too keen on the unsettling or downright scary moments when my hyperactive brain pops out to the shops temporarily and I am suddenly aware of another facet of time; where meaning is present in a sudden, overwhelming, frightening moment that feels like eternity; a moment that is momentous. A single word towards the end of Part II when I received confirmation of my illness should make this meaning clear(er), I hope.

Just writing this introduction has also reminded me (sorry, slightly irrelevant detour here, but bear with me please) of the fact that English words “thing” and “think” are linguistically related, as they are in Latin: “res” means “thing” in Latin, and its verb infinitive is “reri”. Here endeth the lesson [and if the words are spliced together they make “Herendeththelesson” is also the name of a Viking in one of the Asterix books, a series that I loved throughout my childhood and into adulthood]. And the point of all this is what? I hear you cry…well, it reminds me that my days are numbered, but the rest of humanity has a mental calendar of works and days; it’s just that others can get a new one in December and fill in all the blanks where required… but the time will come when my column is empty. I will think no more. Things will be around me but I will be unable to think about them in a meaningful way: to explain; relate; enjoy; understand; banish; fear; accept; dismiss. The link between two simple yet powerful words is gone, physically and linguistically.

Let me return to my main topic, and provide a little more autobiographical information. I have suffered with depression for around 13 of my adult years, and had various medications to combat it (whereas in reality it just mitigated the symptoms - slightly). I had my first breakdown in February 2016, but the black clouds had been gathering for at least a couple of years. Clinical taxonomy has increasingly demonstrated correlations between depression, Alzheimer’s and damage to cells in the brain. Cause and effect is blurred: between physiology and pathology; psychology and psychiatry. In February half term week in 2016 the four of us went to Treyarnon Bay in Cornwall, staying in a lovely cottage just behind the beach. It was a restorative, relaxing time for all of us, but not long after we had returned home I had my first full breakdown, mentally and physically. I was unsteady; had a wildly erratic sleep pattern; was disoriented on waking; crying frequently; my memory seemingly shattered.

I was being managed by my GP throughout this period, and was put on new medication, but had to take six months off work. I made a gradual progress back to “normality” (however that is conceived; it’s as nebulous as “God” in my opinion) but I had ongoing short term memory issues and acute sensitivity to noise. I went back to work part-time in September 2016, and then back to full time in January 2017, and managed the year quite well both at work and at home, with no new or significant events health-wise. This lasted into 2018, with no damaging or dangerous moods or depression, but the memory remained untrustworthy, hiding in some distant part of my head and refusing to come out except on its own terms, like a recalcitrant dog. So - a hiatus (or quietus in a non-Shakespearean way) .

In the autumn of 2018 however things (or thinks - sic) took a sudden turn for the worse. There was a sudden onset of acute anxiety; panic attacks; and brain freeze: cold and chilling; completely different from the transformative moments I highlighted at the start, or any rational anxiety, but characterised by what I can best describe as an icy cloud engulfing my thoughts and rendering them insensible to anything but fear, raw, inchoate fear. I added hyperventilation and full bodily shaking to my growing list of symptoms; the noise sensitivity escalated; I found myself having completely uncharacteristic and unpleasant episodes with alcohol, which frightened me and my wife. What made the alcohol bit worse worse was that I was doing it secretly. This was a huge betrayal of my wife and her care, and I am still ashamed of it; but I stupidly thought it could erect a barrier against all the horrible explosions going off in the wasteland of my mind. It was a betrayal of those around me and I really don’t want to be in that position again, or undermining their concern and trust in such a hurtful (and futile) way.

In December my wife took me back to the GP, and, as Winnie the Pooh might have put it had he had episodes like mine, we pointed out quite assertively that the memory issues were a Very Bad Thing and I Couldn’t Think Properly and sometimes I was Flying Through The Clouds Holding A Balloon and sometimes I was crashing down to earth through the branches of a Very Tall Tree. Could we be referred to an Owl elsewhere if possible? because it would be A Very Good Thing if they could sort out this mysterious cause and effect of anxiety versus memory loss i.e. which caused which? So - we were referred to the Memory Clinic (with human doctors, not a group of dodgy badgers in The Hundred Acre Wood) for scans and neurological testing. As Winnie the Pooh would have put it, this was at last A Very Good Thing (medically at least. Emotionally, domestically and mentally it was a b***dy nightmare).

I’d like to return to the title of this blog entry: “it is always ourselves that we find in the sea”. I hope it is somewhat clearer now. I mentioned Dover, of course, and its importance in my childhood, but it runs deeper than that: holidays abroad as a child and then with my wife and boys; reading Tonio Kroger for German ‘A’ Level: a delightful short novella by Thomas Mann, my favourite German author, set in Mann’s home town of Lubeck on the north German coast (which will assume more importance in Part 2); the trips to Wales; the holidays on the coast in Britain or the Mediteranean with my father-in-law after the death of my mother-in-law…there is a current that runs through both my studies in literature and our married life that links the sea with memories; childhood; holidays; restfulness; peace; pleasure; experiences; family. But it also reminds of loss and grief.

I inserted the Cummings poem below to foreground these conflicting currents in our lives. The style is lapidary but rich; the lack of capitals, lazy grammar, punctuation, and spacing suggest carelessness, but are actually a sepia tinged reflection both of and through childhood memories. The narrative is seemingly witnessed through the eyes, voice and style of a small child. It connotes innocence; coloured through the prism of childish experience in an enduring, positive sense that both consoles and influences us in adulthood. The last couplet alludes to death and loss (of others and ourselves - a you and a me - my underlining), and we find ourselves in the sea, not by it - even something as small as a preposition is semantically freighted in Cummings’ work. Sorry: ‘cummings’. Does that connote death? Or transfiguration? Or both?

maggie and milly and molly and may (e.e.cummings)

maggie and milly and molly and may

went down to the beach (to play one day)

and maggie discovered a shell that sang

so sweetly she couldn’t remember her troubles, and

milly befriended a stranded star

whose rays five languid fingers were;

and molly was chased by a horrible thing

which raced sideways while blowing bubbles: and

may came home with a smooth round stone

as small as a world and as large as alone.

For whatever we lose (like a you or a me)

it’s always ourselves we find in the sea.

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