Patient Champions Week – Advocating for One Another
Celebrating Patient Champion's Week.
Read MoreIf I could accuse my life of just one fault, it is that prior to my stroke – life had simply been too good to me. Up until that fateful spring day in 2019, my life had been lived in what is glibly referred to as ‘the fast lane.’
Abundant opportunities allowed me to travel the world, for either work or the simple pleasures of experiencing new landscapes, cultures, and people. I had been seduced by the colourful exotica of Mexico, awed by the somber vastness of Australia, and overwhelmed by Russia’s omnipresent spirituality.
With a father from Moravia, my curiosity about the land of his birth, drew me time and time again, to the Czech Republic and Prague, its beguiling capital city.
Changing Lanes
Now due to the stroke, I felt as if my wings had been clipped – literally as well as metaphorically. While it hadn’t dropped me dead in my tracks, the insidious arrival of Covid 19 certainly slammed down the shutters on hopes for a sustained period of recovery.
Following my stroke, family members, close friends, and professional colleagues all fulfilled welcome roles, offering sympathy, advice, and support in many varied forms. But the infallible truth is that with the best will in the world, those that rally round a stroke survivor, are often least equipped to deal with the unpredictable traumas a stroke unleashes.
Last year, despite Covid vaccinations, a low point was reached. As the Omicron variant emerged and reinfections surged, I felt the need to engage on a regular basis with an objective outsider. A therapist whose empathy and insight, would help me navigate the conflicting fears and emotions, jostling for attention in my fuzzy and disorientated head.
Fortunately, The Irish Heart Foundation – as part of its remit – stepped up to the plate with an offer of funded counselling: sessions commenced towards the end of August.
" Now due to the stroke, I felt as if my wings had been clipped – literally as well as metaphorically,"
Old Hand
Counselling is not exactly foreign territory for me. Twice before, I have been cloistered over several months with a therapist, as we interrogated personal relationships that had lost their way.
Little did I envisage at the time that years later I would be back in therapy, having lost my own way. In attempting to deal with a life of anxiety – due to the stroke and isolation – due to Covid, these daily afflictions, had led me onto the bleak shores of purgatory far too often.
In a previous article, I wrote about coping strategies that I hoped therapy might reveal as if there was a hard and fast rule with regard to predictable outcomes. This proved not to be the case of course and as my therapist was wise to point out, the very process of therapy is essentially, the principal coping strategy I so avidly sought.
Watchwords
Gradually, during our early sessions, keywords emerged. Ranging from negatives to positives these formed a clear guide to the ebb and flow of the many conflicting thoughts in my head.
Solitude, Loneliness, Boredom, Purposeless,
Mortality, Vulnerability, Resignation
Endurance, Motivation, Positivity, Focus, Hope
I had certainly dwelt too much on greatly missed friends, whose lives have been cut short – due more often than not to cancer – and although I constantly told myself to welcome the new day they have been denied, this proved to be an especially hard task; each dawn presenting the same mountains to climb, the moment I opened my eyes. These watchwords, succinctly illustrate the enormity of the challenges I have been facing.
In my bedroom, there are two photographic portraits of my English and Czech grandparents. Swimming into vision at first light, they remind me that all four survived two world wars; teaching me a great deal about survival in desperate times.
" On several occasions, a close friend has commented that when we are together, she completely forgets I have suffered a stroke.
The Slow Lane
In 1961, at the age of thirteen, and with little notion of where my life was headed, a musical opened in London called Stop the World – I Want to get Off. Thankful that my stroke hadn’t obliterated my memory, I mentioned this to my therapist. I was not harbouring suicidal thoughts, just a desire to step outside my self for a while; to observe what progress others see in me, that most days I fail to quantify or appreciate. He was quick to remind me of the immortal words of the Scots poet Robert Burns.
“O, wad some Power the giftie gie us
To see oursels as others see us.”
Encouraging my fanciful notion, is the fact that on several occasions, a close friend has commented that when we are together, she completely forgets I have suffered a stroke. Whilst consoling and illuminating to hear, is it any wonder my mind reached back into the dark recesses of its memory bank, and unearthed this musical omen?
On the subject of poetry, during the early sessions, my therapist and I discovered a shared admiration for a whole gamut of poets, writers and dramatists including the visionary Irish priest, philosopher and poet John O’Donohue.
Amongst all his writing, Benedictas – a book of blessings never fails to astonish me. A series of meditations derived from Ireland’s spiritual heritage, I have found these blessings perceptive, and profoundly moving in relation to survival in a post-stroke world.
From For a friend on the arrival of illness
“Now is the time of dark invitation.
Beyond a frontier you did not expect.
Abruptly, your old life seems distant.
May you learn to use this illness
As a lantern to illuminate
The new qualities that will emerge in you.
May you find the wisdom to listen to your illness:
Ask it why it came? Why it chose your friendship?
Where it wants to take you? What it wants you to know?”
From This is the time to be slow
“Try, as best you can, not to let
The wire brush of doubt
Scrape from your heart
All sense of yourself
And your hesitant light.”
Why do I find these various passages so compelling? Hesitant light is an evocative image that sums up perfectly, my sense at times of existing in a world of perpetual twilight; asking a person with an illness to consider it a ‘dark invitation’ from a friend wishing to take them on a journey, is an audacious concept, which puts a compassionate face on an unpalatable truth.
As a solitary only child, I cannot recall ever having an imaginary friend, but, since my stroke, my head is often teeming with dissenting voices. Sometimes they are gently cajoling, at others, mildly exasperated; however, the sensation is a reassuring one – it is as if I am being minded by concerned but absent friends.
In his book – The Voices Within – Charles Fernyhough describes five types of inner voices: the faithful friend, the ambivalent parent, the proud rival, the calm optimist, and the helpless child.
In discussing the nature of my ‘inner voices,’ they clearly adhered to those of the faithful friend and occasionally the calm optimist. Unfortunately, at times, I have to ignore the voice of the helpless child, no matter how persistently it wails in my ears.
During the darkest hour, when benevolent voices are deep in sleep, the helpless child is habitually wide awake. Even the promise of dawn adds little comfort for a restless brain refusing to stay in the moment, exploring the day’s worst-case scenario as if on an endless loop. We have all been there, and my therapist agreed. Lying in the gloom, with an unnerving sensation that a door in the back of the skull has opened, and a gust of wind is scattering random thoughts that refuse to be silenced.
For instance, the passing years and growing older – or as the eminent American psychologist Carl Rogers has observed – Not growing older but Older and Growing.
Other thoughts include the Trial and Error of managing medication; possibly the most unwelcome words a patient hears from a doctor? When I have nailed the healthy eating, liquid intake, and plenty of exercise regime, it is a source of constant stress, that I must juggle dosages of medication for anxiety, with those that help alleviate the unwelcome side effects – primarily constipation.
" Following my stroke in 2019, a career spanning over 40 years of designing sets and costumes for plays, opera, and ballet, was abruptly curtailed."
A Saving Grace
Following my stroke in 2019, a career spanning over 40 years of designing sets and costumes for plays, opera, and ballet, was abruptly curtailed. Subsequently, I was inundated with the inevitable question – when would I draw and paint again? My answer was simple enough– I had absolutely no idea.
During 2020 and 2021, writing articles for the Irish Heart Foundation, unexpectedly managed to fill up the day’s blank spaces, until the Foundation launched its competition to design a Christmas card. On the spur of the moment, I decided to test myself, to see if my various skills honed over so many years were still functioning.
Winning the competition with my design for The Nutcracker was just the beginning of my return to the artistic fold.
The Queen of Hearts, a card I designed to celebrate not only Valentine’s Day, but also the Irish Heart Foundation’s Love Run, proved to be a very worthwhile if hugely demanding second act. The ultimate challenge was the final act – a card for the blessed Saint Patrick.
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