ON SUBJECTIVE TIME
‘I know this much: that there is objective time, but also subjective time, the kind you wear on the inside of your wrist, next to where the pulse lies. And this personal time, which is the true time, is measured in your relationship to memory.’ Julian Barnes
Next month, on August 7th, S. and I will have been married fifty-five years. Four years longer than my lovely but troubled my father lived. We had already lost him by the time we left university together and decided to get married.
Fifty-five years. Over half a century. They tell me the emerald stone traditionally associated with this anniversary signifies resilience, hope and enduring love. I can’t help but think of Dorothy, the Lion, the Tin Man and the Scarecrow’s journey to Emerald City in the Wizard of Oz, dreaming of being something more than themselves, seeking for someone who will give them qualities such as bravery, learning or love; only for them to find they already possessed them. They just needed the Wizard to point that out.
Fifty-five years. Over half a century. Fifty-five years ago I married a young man who dreamed. A young man who slowly learned to craft those dreams into beautiful, poignant, funny, sharp, political and magical pieces of theatre and opera. A young man who wanted to listen to people’s stories, share people’s stories and find meaning in people’s stories that might help us think how best we might live our lives in this troubled world.
I had imagined that young man and I might go on following those dreams together, always and forever … Until death us do part.
But life is not always as kind as it should be. And nothing in our lives together, in the dreams, the stories, the theatre, the music that was part of them prepared us for life’s cruelties. Nothing prepared us for the desolation that would follow the loss of one of our sons. And nothing prepared me for learning, soon after, that I would also lose that young man with dreams I married all those years ago. Not in ‘the ordinary instant’ of sudden death that Joan Didion experienced, nor through any wilfulness or deliberateness on either of our parts. Instead through the slow unravelling of the knots I had imagined would always bind us by a disease that causes the atrophy and eventual death of the nerve cells in the front of the brain. It is a disease that cements the brain in a kind of rigidity, keeping it permanently fixed in the present tense and immediate experiences, destroying one of our most beautiful capacities as humans to let our minds wander, closing down our ability to imagine things being otherwise and, cruelest of all, removing the ability to daydream.
Oh Rose thou art Sick …
It’s probably important at this stage for me to explain a little more about behavioural Frontotemporal Dementia. For this is the disease I am describing. It is one of what are called the orphan diseases. Not because of the physical impact they have on those who suffer it or those who care for them, although the term often feels metaphorically appropriate for bvFTD, but because they affect less than 5 people in 10,000. There are only 7000 orphan diseases in the whole world. It’s rareness means it is relatively unknown even by the medical profession. It has no clear markers. No fixed symptoms. No predictable pathways. As yet there are no known causes, no treatment and no cure.
Like ‘the invisible worm’ that ‘flies in the night’ in Blake’s poem, bvFTD acts by stealth, silently eating away at the frontal and temporal lobes, disconnecting them from the rest of the brain and in doing so altering behaviours, destroying personalities and causing a distressing loss of empathy and understanding of the emotions or feelings of others. The damage it inflicts on the neural networks means those parts of the brain responsible for self-awareness, for reflection and deliberation no longer operate.
Those suffering from it also suffer from something called anosognosia, or a lack of understanding that anything is wrong with them. All this makes it notoriously difficult to diagnose. It also makes it the most isolating of the degenerative brain diseases to deal with for carers.
All Things Counter
It’s difficult to pinpoint when things really started changing for the dreamer I married. Or more accurately when I, and others, started noticing things had changed.
I wonder now if there might have been portents during Covid. But all of us were living in a strange space in those times. It became impossible to imagine anything other than living in our weirdly cocooned worlds. For the first few weeks of lockdown we were afraid of even leaving the flat. When we eventually came out of our self-imposed isolation we began to go for what we bizarrely described as ‘walks’ – despite them being little more than covering a few hundred yards back and forth along our little canal basin. Sometimes we invited neighbours to join us – always keeping the correct distance – sharing stories of the lives we had all lived other than in London. Some mornings we got our bikes out early and rode into the centre of the city. The streets were empty and we had the capital to ourselves. We took what now look like oddly disturbing photographs in which we still wore our masks even when there was only the two of us there. It was as if they had become part of us. The whole world was topsy turvy and disjointed and so were we.
FTD begins with small almost unnoticeable changes things. No one journey is the same as another. The first thing our friends mentioned was a heightened concern with working out everyone’s best routes home. Often as soon as they had arrived. Like most young actors he had always had a ‘side’ job. Hospitality, building sites, office temping, teaching English as a foreign language. Cycle couriering was the one he loved best, as he created a slightly roguish character with suntanned muscular legs in his cycle shorts and singlet. A rogue who managed to snap bike frames in two through overuse, occasionally got stopped ‘by the cops for going the wrong way up one-way streets or other minor infringements’ and answered to the call name of ‘Ginger’ – on ‘account of his hair colour’. Cycling madly through the streets of the city dropping off packages, artwork, documents inevitably led to the odd accident on slippery roads and the resulting cracked bones. But, like once getting a casting at a company he used to deliver to, that was part of the craic. It also meant that like most taxi drivers he probably developed a larger hippocampus as he began to know every single street in London. If developing a compulsion to work out people’s ‘best routes’ home, even to the extent of knowing which part of the platform to be on for changes on the Ubahn whilst in Berlin seemed odd, it also felt like a quirky revisiting of old skills.
There was the period of compulsive, almost driven, walking along the same routes day after day which is typical of FTD. In his case it meant losing so much weight his doctors sent him for every available physical test, including MRIs, to try and find the cause. The coupling of this with a deep and heartbreaking concern for not having creative work, a growing inability to grasp basic social skills such as standing in queues, realising one wouldn’t necessarily get served as quickly as one wanted in restaurants or clearing the table before everyone else had finished eating eventually led to a diagnosis of extreme anxiety. When this was accompanied by a need to retell our recent loss in great detail to strangers as well as friends, the possibility of PTSD was mentioned. Medication generally advised for psychiatric disorders such as OCD and anxiety was prescribed. Nothing worked. And no one knew why.
There were other random indicators. A rapidly diminishing ability to read others’ responses which led to unpredictable confrontations. Some of which, like the time he met Peter Mandelson in the park and asked him when he’d last spoken to Epstein, were funny when whe recounted them. There was a time he insisted a fellow volunteer at the food bank, who was a fierce supporter of Israel, might want to listen to the story of his friend who had died in the Gaza bombings. And a day when he responded to a woman who told him Jeremy Corbyn was a ‘moron’ while he was delivering campaign leaflets with ‘maybe you are the moron, madam’. But if he didn’t any longer grasp why apologies might be needed in such circumstances none of us were inclined to insist.
A shifting sense of present and future time began to mean setting off hours too early for everything, constantly arriving prematurely for appointments, and increasingly pre-empting tasks around the home like setting tables for meals long before needed.
Diagnosis of the behavioural form of FTD is famously difficult and is almost always preceded by years of misunderstood symptoms and mis-prescribed solutions. No one is to blame. It’s rareness means most doctors have no experience of it. It took an agonising month, when his whole character seemed to fall apart, when everything that had made him the person he was disappeared in a tumult of agitation, which we later learned was almost certainly exacerbated by the wrong medication, to send us looking for more help. A fortunate alignment of holiday rotas at our local GP surgery that meant we had to see someone other than our regular doctor finally led to meetings with the one female doctor who had come across bvFTD, for her to tell us she was ‘95% sure’ this was what it might be.
Endless rounds of appointments with neurologists, psychiatrists, social workers, MRI scans, blood tests, memory tests, more MRI scans coupled with voraciously reading what little research there is to be found online, means that like my fellow carers in the online support group I now belong to, I have become a ‘lay expert’ on the condition. Our need to explain as carers, even to many health workers, that while bvFTD comes under the umbrella of ‘dementia’ it has little or nothing to do with Alzheimers has somehow placed those of us who do the caring in the role of a Greek chorus, acting as intermediaries between the protagonists and audiences, or in our case patients and doctors.
Like a Greek chorus we are also the collective voice of the trauma, witnesses and participants, observers and questioners, often possessing insights and knowledge whilst needing to give voice to our own bewilderment and confusion. As the Elders in Brecht’s Antigone explain, it is a role few of us would have chosen.
Writing things down, whilst adhering to the need to ‘read, learn, work it up’ and ‘go to the literature’ that Joan Didion speaks of, especially during times of trouble has always been one of the ways I begin to make sense of myself and the world. My close encounters with bvFTD are beginning to feel like a way of turning my casting as ‘Chorus’ into something that might help others understand this complex condition and its impact on those who now find themselves ‘carers’.
Postscript: Pied Beauty
At the final prize giving at my Catholic convent grammar school in 1967 I was presented with a book of religious poems. I remember taking it from the hands of the nun who had made our lives such a misery in our final years and wanting to tear it up in front of her. It wasn’t even a beautiful book. It looked cheap and the pages were rough and grey. It also included a lot of poems by the nuns’ favourite Jesuit poet Gerald Manley Hopkins, whom we’d been forced to study alongside Ten Twentieth Century Poets for ‘0’ level. Needless to say I had been vociferous in my essays in stating a preference for Edward Thomas, Edwin Muir, Robert Frost at the time. At sixteen I had little sense of, or desire to understand, the dark night of the soul or profound spiritual crisis it seemed Hopkins was speaking of.
The past few months have changed that. Rediscovering Hopkins through coming across the lines in Carrion Comfort where he shares his determination not to submit himself to the bleak but tempting comfort of Despair, I find myself unsettlingly reassured by his ferocious wrestlings with God, his faith and hope. His willingness to lay bare his internal struggles speak to me now in ways I could never have expected. The uncompromising rawness of the language, the abruptness of the rhythms that once jarred and confused seem to echo and trace the fierce maelstrom of emotions imposed by what I have come to know as anticipatory grief. The grief we sometimes feel at the change of seasons or changes in our lives, Hopkins explains perfectly in Spring and Fall, are so often caught up with that mourning of the loss of selves we once knew.
His almost electrifying delight in the ‘swift; slow, sweet; sour’ paradoxes of this world in Pied Beauty has become something I find myself wanting to capture and give voice to. Even when things seem so unfair, so random, I am beginning to recognise there is joy to be found in the ‘dappled’ imperfections of nature and discover a new love for:
‘all things counter, original, spare, strange;
Whatever is fickle, freckled (who knows how?)’
Pied Beauty
As I try to take this determination to celebrate all things counter and different forward I am also wondering if, perhaps in time, Mr Hopkins might even reconcile me to the nuns?
