Stroke survivor Joe Vanek on learning to accept life with the long-term side effects of stroke

Since my stroke, there are many aspects of my radically altered life that I am destined never to forget; the stair mantra being one. I can still hear the soft voice of my physiotherapist at St James’s Hospital, as she gently reminds me that I must ascend staircase with my good leg first – as if to heaven – and then, when descending, lead with my stroke affected leg – as if to hell. Heaven and Hell – what a thought – battling it out for supremacy in my poor befuddled head; how ironic and yet how true.

Most days, my moods veer between these two polarities, and now three years later, the time seems right to take stock and evaluate the point along the road to recovery I have reached, since my stable and focused life was turned abruptly on its head, in May 2019.

It was the poet John O’Donohue – prescient as ever – in his blessing for a friend on the arrival of illness, who first introduced me to the notions of ‘a dark invitation’ and ‘a frontier you did not expect’; propelled in the blink of an eye across this frontier, the invitation was dark indeed. Endeavoring to retrace my steps during the intervening years – and rediscover my lost sense of self – has been a daunting journey; during which time, I have stayed mindful of all those for whom a stroke, is tragically, the ultimate and darkest invitation they will ever receive.

Reflections

Looking back to my early days of physiotherapy, I recall staring aghast at a male figure in a mirror. It appeared disjointed and was listing badly to the left. Surely, this couldn’t be me? The distraught face may have been oddly familiar, but the twisted stance of the body – unable to stand without support – had to belong to someone else? But reflections never lie, and the me I had grown accustomed to over seven decades, was now an alarming and inescapably new me, and despite a huge shock to the psyche, was urgently in need of nurturing and acceptance.

Fortunately, nurturing was in ample supply during my lengthy stay in hospital, and much to my relief, produced tangible results. Acceptance, however, still remains one of the hardest pills I must swallow daily, to maintain a grip on life. It never ceases to amaze me how I struggle with the simplest of tasks that had never bothered me before, and John O’Donohue truly understands and elegantly phrases, the nature of my previous existence.

“You barely noticed how each day opened.
A pathway through fields never questioned.”

Now, due to ataxia – a loss of muscle control and coordination – and despite copious finger exercises, deficient motor skills with my left hand are still a daily trial. This often leads to acute frustration when typing or dealing with buttons, shoelaces, and cutlery; at times, keeping despondency at bay is far from easy. As this affliction, shows little sign of further improvement, I have no choice but to constantly coax my wayward left hand into partnership with my good right, so that another day can pass with a semblance of normality.

Stairs

Normality? How does a stroke survivor determine this ever shifting, state of being? No two days are ever alike in relation to how I feel, both emotionally and physically: each day in some form, I feel ill. Diverse challenges target me daily from all directions – some I rise to, others I defer for another day – yet either way, the end result is a remorseless wave of exhaustion that drains the spirit as evening approaches.

In the early days, I discovered that when lying down or just reclining, my befuddled head eases and a welcome sense of calm descends; during these stressful years of readjustment, I have learned that an early night in bed with an absorbing book, is to be cherished. But earlier, I was reminiscing about stairs, and to reach my bedroom there are fourteen to navigate.

Ascending stairs seemed an insurmountable ask, especially after achieving sufficient balance control that occasionally I took steps on flat surfaces, without the aid of walkers or canes. But, nevertheless, there they were – a neat set of treads – tucked away in a small back room of the physiotherapy wing, exerting a siren call that was impossible to resist.

Now I had a new mission, and yet another hurdle to clear. My physiotherapist was plagued daily with the same question – how soon could I attempt to climb them? When the auspicious day finally arrived – though my first steps were stumbling, and I clung desperately to the tubular handrails – I felt a profound sense of exhilaration, as my legs sprang naturally to propel me upwards. No longer did they feel like the dead weights on which I’d shuffled up and down endless hospital corridors during the early days.

Currently, I climb the stairs at home, mostly without a second thought, and though grateful for the extra handrails – added to blank staircase walls – rarely use them. Out in the wider world, since the spring of 2020, I have jettisoned the use of a cane, although on occasions, if I am expecting unsympathetic terrain, I carry one that folds neatly, and fits discreetly into a small canvas shoulder bag.

Shopping

On shopping expeditions, friends who accompany me are anxious and amazed – in equal measure – as I step effortlessly on to escalators or off a Luas tram, and head at speed into the hurly-burly of the city (often leaving them in my slipstream). But such confidence comes at a price, which is the acute need for vigilance at all times. Too often, a sharp turn of the head – assessing traffic before crossing a road for instance – can lead to dizziness and disorientation, as can looking up at street signage too quickly, or down at a curbstone.

Also, in the apparent safety of my own home, I need to approach domestic activities fully aware that I now exist in the slow lane, and that to rush at anything only courts disaster.

Recently, while doing laundry in the utility room, turning too fast, I managed an almost perfect pirouette, and as the floor rushed up to meet me, I was grateful that my good right hand could catch a collapsing ironing board, thereby deflecting a nasty blow to the head.

Noise

One of the anomalies of my post-stroke life, is the unpredictable impact of noise, and its power to distract and cause distress. This is all the more surprising, because I can listen to any number of symphonies, choral works, and piano concertos at high sound levels, without noticeable side effects; but then for me of course, classical music is definitely not noise.

During this summer, I decided to test the waters of my defunct cultural life, with several visits to art galleries and theatres, and my firm intention was to enjoy – in a more relaxed Covid world – plays, operas, concerts and dance. Encantado, a rumbustious contemporary dance production from Brazil at the Abbey Theatre, featured an intoxicating soundscape of rhythmic clicks and rattles. These increased rapidly in tempo and decibels, as the semi naked dancers – resembling jungle predators – added hair-raising screeches and howls to the score. Forced to put fingers in my ears, this brought zero relief, so reluctantly – much as I was enjoying the performance – I had to leave.  Meanwhile, to my amazement, a slack-jawed, mask-less audience appeared impervious to this nightmarish aural onslaught.

A few days later, arriving early for a matinee at the Smock Alley Theatre, the airy open plan foyer beneath its spectacular banqueting hall, reverberated to the sounds of a wedding reception in full cry. Again, the noise level was intolerable, and I left, to seek solace before the show with a friend in a nearby coffee shop. But, here too, there was no escape from noise. Due to the hissing and clanking of the Wurlitzer sized coffee machine – working at full throttle – and the incessant clatter of cups and saucers on metal shelving, I found it impossible to concentrate let alone hold a conversation.

A month or so later, the cool inviting gallery spaces at the Royal Hibernian Academy promised serenity and focus, in which to view the annual summer exhibition. However, my expectations were dashed, when two mothers pushing strollers through the galleries, seemed unfazed by their babies’ persistent shrieks and cries, which sent my anxiety levels into overdrive.

We live in a cacophonous world, and I feel that no one but me notices. Nonsense of course, but this heightened sensitivity to the sounds of the outside world, I find very stressful to live with. To combat this, a return to one-on-one yoga, is a heartening twice weekly panacea, and the sweetest words I hear all week, is when my Colombian teacher reminds me that “I can leave all the duties and all the worries, outside the room for the next hour.”

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 known 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.