From doctors’ appointments to dental visits, life is not without its challenges for people living with stroke, writes Joe Vanek, Stroke survivor and member of the Irish Heart Foundation’s Crumlin Stroke Support Group.

A Tentative Life

During the late spring of this year, I read Maggie O’Farrell’s enthralling and award winning novel Hamnet. Chronicling the death of playwright William Shakespeare’s only son in  1596, midway through the book, there is a stomach-churning chapter that has haunted me all  summer long. It charts the journey of a box of glass beads from Venice in Italy to Stratford – on- Avon in England; lined with assorted rags, the box also harbours a flea which carries the  Bubonic Plague. Its release from captivity shapes a drama of appropriately Shakespearean proportions.

Fast forward five centuries, and in the early days of 2020, travellers to Ireland from infected areas, unleashed  Covid 19 upon an unsuspecting public, both north and south of the border. Within a few weeks, almost every county on the island of Ireland, was reporting cases of this new, and potentially lethal disease. Contagion no longer had to rely on arduous sea voyages, followed by laborious transit over dry land – as depicted in O’Farrell’s novel –  throughout the 20^th and 21^st centuries, aeronautical and tourist industries, accelerating the ease of travel, paid little heed to the speed with which a pandemic could be triggered and its likely devastating toll on life.

SAD NEWS

So, here I am in the middle of summer, at the age of 73, sitting in my ivory – no – white tower in D8, feeling protected, and  safe in the knowledge that I am ‘ double jabbed’. Reading an English newspaper on line, the first shock came as I read an obituary for a well-known opera director, who had died at 67 from Covid complications.

A few hours later, I receive a phone call from my closest friend in London, with the shattering news that she has Covid; the symptoms are a perfect textbook case. Sadly, due to the high risk of anaphylactic shock – to which she is prone – she had chosen not to be vaccinated. Having followed all the  precautions scrupulously, she talks about the nightmarish sensations of an unwelcome entity within her body, over which she has no control.

I listen in appalled silence, unsure how to respond, recalling the fifteen minute wait after my own two vaccinations, in case of an allergic reaction (which in some cases, can be life threatening). Later I return to my notes for this article, but my head is reeling, and not just from the double shock of what I have read and heard ; the unpalatable truth is that since my stroke in May 2019, my head has in many ways, never stopped reeling.

More than two years later, and despite the initial euphoria of my COVID vaccine, I am still leading a tentative life.

GUT REACTIONS

Before my vaccinations, a realization that maybe something was not right with my stomach had been festering for several weeks. The essential plumbing system that in the past had operated  in almost total silence, was now a source of rumblings and gurgling, accompanied by a feeling of the stomach lurching, and that water was slopping around inside. As the months passed, these varied symptoms grew more alarming, so that trying to concentrate or relax became a greater challenge than ever. My GP at the time was reluctant to arrange an endoscopy, hoping to alleviate these symptoms by upping the dosage of two key meds for stomach acidity and general anxiety, but regretfully, these changes saw no discernible improvements.

Deciding to do a little research, I discovered, much to my amazement, that the human body contains not one brain but two – the second residing in the gut. They are inextricably linked by a veritable national grid of nerves, with anxieties in the brain – a common condition following a stroke – giving birth to butterflies in the stomach, or a feeling of the stomach tied in knots.

Anxiety takes a physical toll on the digestive tract, interfering with the gut’s microcosmic flora and fauna that help keep it in check. So, were all these symptoms basically provoked by my emotional state, or indicative of actual underlying medical conditions?

ENDOSCOPY AND AFTER

With a certain amount of reluctance, my GP eventually referred me to a consultant gastroenterologist at a south Dublin private hospital – the endoscopy followed a few weeks later but firstly, a word of warning. For stroke survivors in particular, any medical procedures involving sedation, carry a degree of risk. The alternative, which I chose unwisely, was an anaesthetizing throat spray: the advantages being its immediacy, and that within half an hour, it wears off completely.

My charming Slovak nurse assured me that if I imagined the endoscope tube with its camera, light and biopsy snare, as nothing more than a boiled sweet, and swallowed hard, it would slip easily through the oesophagus and into the stomach without discomfort. How mistaken she was, because what followed was one of the most frightening and unpleasant experiences I have ever had (other than the stroke itself ).

Following the ordeal – which seemed interminable – I thought I might never be able to swallow again, yet within the promised thirty minutes, I was able to enjoy a late breakfast in the recovery room, while all around me, patients who had chosen the virtuous path of sedation, lay sprawled in various catatonic states.

The endoscopy and biopsy results revealed just two conditions – Barrett’s Oesophagus and a Hiatus Hernia, neither of which were felt to constitute a health threat for the foreseeable future. The Duodenum, or small intestine, was normal, nor were any stomach infections detected. The upshot, was the continuation of a major stomach med, and another endoscopy in three years’ time (which will certainly be under sedation !).“So, where do we go from here?” I asked my GP. His response was inevitable: with the help of a food diary, an investigation into diet and food intolerances, and to explore further, anxieties generated by my foggy brain, possibly a course of psychotherapy.

THE DAILY GRIND

Anxiety, is one of the most unwelcome gifts a stroke bequeaths, and this was reinforced in  late June, by a dental visit with a chipped front tooth. The recently repaired tooth, should have lasted several years as opposed to months, and my dentist was quick to point out that if I was suffering from anxiety, the damage was likely due to me grinding my teeth during sleep. Despite  my skepticism, he was absolutely certain, and a bite-guard was duly recommended. My initial response, was that this seemed an extreme and grotesque solution, but nevertheless, a mould of my upper teeth and gums was taken, and a rigid acrylic facsimile produced to fit over them.

Although easy enough to insert, it proved impossible to remove without the use of both hands, the left of which – despite copious hand exercises – still has poor motor skills. It also cut into my gums while I slept, adding alarming amounts of blood to gums already prone to bleeding from blood thinning medication. It was another of this summer’s stomach – churning experiences.

Eventually, a replacement was provided in a softer, malleable plastic, with the texture of a blanched wine gum, and so far, it has been easier to manage with just my right hand, and to my relief, all my teeth are still intact! A final bonus is that it plays less havoc with my gums, so that mornings are generally, less the stuff of nightmares.

HEARTS AND FLOWERS

Towards the end of August, the Irish Heart Foundation held a gardening competition called BLOOMING HEARTS and invited stroke survivors and those with a heart disease, to submit photos of their gardens. Much to my astonishment and delight, my sculptural – if modest – city patch was awarded joint first prize.  Sitting in the garden, on the last of the month’s precious few sunny days, I tried not to dwell on its frost bitten transformation in the bleak midwinter, but this image proved impossible to dispel.

Some days, I feel as if I am living in someone else’s body. My left hand used to be able to hold and rotate a fork, now suddenly I watch in disbelief as the fork escapes my grip and slithers across the kitchen floor.

My left leg once strode out confidently before me – mostly, it still does – only some days it seems to have a mind of its own, and needs to be brought to heel.

Fully vaccinated since the end of April, I had hoped that the boost received from the vaccine would more than compensate for my occasional fall from grace – fretting over my bodies lingering waywardness or my head’s perpetual fog –  but the unexpected emergence of the Delta Covid variant which is twice as contagious as the original Alpha strain, coupled with its rapid global domination, has cast a pall over the optimistic hopes of the first few months of 2021. With new infections of fully vaccinated people accelerating, and the inevitability of further Covid strains emerging, as 2022 hovers on the not so distant horizon, I have to admit to nursing a heavy heart.

POSTSCRIPT

My friend has made it through Covid. Following three weeks in hospital with severe respiratory problems, she is now home, and currently staving off  the worst excesses of Long COVID.

Food allergies have been addressed, with the exclusion of acidic fruits and spicy foods, and the introduction of probiotics; results to date, have been encouraging.

Weekly psychotherapy sessions started in late August, kindly facilitated by Les Carroll and the Irish Heart Foundation. It is still early days, but my hope is that in time, they will shine a welcome light on coping strategies, for the uncertain road that lies ahead.

Joe Vanek

Joe Vanek is a well renowned English designer for theatre, opera, ballet and contemporary dance both internationally and in Ireland. 

He was Director of Design for the Abbey Theatre from 1994 – 97, and Design Associate for the Wexford Festival Opera from 2006 – 2008.

Joe is principally know for his designs for Dancing at Lughnasa by Brian Friel, which received 2 Tony Award design nominations for the production in New York on Broadway. 

He is also a member of the Irish Heart Foundation’s Stroke Support Group in Crumlin in Dublin.