Dispatches from the dark side of the moon – my stroke and me

By Joe Vanek Stroke News   |   4th Jun 2020

In this beautifully crafted essay, Joe Vanek, a member of the Irish Heart Foundation stroke support group in Crumlin in Dublin, shares his personal experience of stroke and how he navigated the rocky road to recovery.

When my GP received my discharge details, he phoned me in shock: he felt that of all his patients, I was the least likely to have a stroke.

Although I had been on high blood pressure medication for several years, it was a low dosage. I hovered it seemed, in a grey borderland that was not considered a threat; in fact a few months earlier I had been on a 24 hour monitor that indicated a level playing field.

My good fortune that the effects of the stroke had been less calamitous may be due to my daily walking at considerable speed across Dublin (where I have lived and mostly worked for 23 years) and that during the eight months prior to my stroke, I attended a gym twice weekly, with a personal trainer.

Released without warning with all the ferocity that the god’s on Mount Olympus could muster, the thunderbolt struck me on the left side of the head as I was in my bathroom one early morning in late May 2019.

As I slid unceremoniously to the tiled floor (fortunately breaking no bones), I knew instinctively that this phenomenon was way up on the Richter scale of fleeting dizzy spells I’d experienced while bending down during the previous eighteen months.

Crawling on all fours to my front door to summon aid, I snatched a phone from its cradle and dialed 999. Whilst awaiting a response, my savior materialised; a neighbour about to unlock his car parked directly in front of my house. Gasping and asking me what was the matter, he squatted down immediately to mind the shivering wreck that I’d become. During the few minutes it took for the ambulance to arrive, I surfaced briefly to discover that my crouching minder was none other than the towering form of rugby player – Devin Toner.

" The thunderbolt struck me on the left side of the head as I was in my bathroom one early morning in late May 2019."

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A Classical World

Within twenty minutes and, with all the on the spot tests and questions completed by the calm and efficient ambulance crew, I was in the Emergency Department at St James’s Hospital in Dublin surrounded by a head consultant and team, all weighing up the chances that my symptoms indicated an inner ear infection or even more likely – a stroke.

Following a few days in the Hyper Acute Stroke Unit (HASU ward) and an MRI scan, this latter diagnosis was regretfully confirmed. My stroke had been a cerebellar infarct, caused by a blocked blood vessel in the brain resulting in reduced and damaging oxygen levels. Thus began my three-month odyssey in the Mercer’s Institute for Successful Aging (MISA) building in St James’s Hospital in the auspiciously named Handel Ward.

Allusions to a classical world consolidated when one of the first male nurses I encountered, turned out to be called Ulysses. During my stay, a polyglot of staff revealed equally emotive first names – Emmanuel, Beatrice and Isolde for starters. In fact, by the time of my discharge, I had been cared for by almost twenty other members of the ward’s staff, several hailing from Ireland, but the majority, from Nigeria, the Philippines, India ( Kerala ) Canada, Portugal, Slovakia and various Baltic nations.

" A fellow stroke survivor I have subsequently met at a support group has corroborated that the sensation in his head is of a radio station not properly tuned in,"

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Ataxia, double vision and dizziness

As for my prognosis, positives first. My face, speech and memory were thankfully unaffected. But the left side of my body bore the brunt of the onslaught and it soon became apparent that my arm, leg and hand were AWOL, my balance compromised, thus I was unable to stand, let alone walk. I had ataxia, which in layman’s terms, is a lack of muscle coordination.

While my basic vision seemed to be unaffected, my perception of the world that surrounded me was subtly altered in increasingly alarming ways. As a designer for the stage for more than forty years, my work involves model making and detailed technical / architectural drawing. Over the years, I have naturally developed a spatial awareness, linked inextricably to scale – proportion and perspective.

Double vision came first; grid patterns on the ceiling of the HASU ward resembled colliding train tracks. In tandem with this effect, the bright blue curtains surrounding my bed started to undulate; their marbled patina overlaid with crude yellow rectangles and amber dots, only made the sensation worse.

Seeking relief by looking at the linoleum flooring around me, no respite was offered, as over printed swathes of colours – mostly blues, greys, creams and ochres –became a constantly eddying miasma reminiscent of waves on shingle. Trying to focus on my surroundings was well nigh impossible. This disorientation was further added to by my awareness that nothing was level; every surface was sloping away and down, pulling me inexorably to the left. As the days passed merely sitting vertically became a challenge.

Then – my head. Yes, where was my head? Assuredly still on my shoulders as before, stoically endeavoring to deal with every curved ball the stroke had lobbed at it.

Yet, in all honesty, it felt more like it was on the dark side of the moon. Befuddled and fuzzy, dizzy and disconnected from the unexpected new reality surrounding me; I felt it was firing on only a few of it’s available cylinders. I still do. Fortunately, relief from this perpetual lightheadedness was only achieved whilst lying down, an activity that swiftly became part of my daily routine in dealing with what was now known as – ‘ The New Normal.’

A fellow stroke survivor I have subsequently met at a support group has corroborated that the sensation in his head is of a radio station not properly tuned in, which makes complete sense to me. Finally, one other sensation I have while standing (to date unique to me it seems) is of soft ground beneath my feet, whether the surface is concrete, wood or stone; accompanied by the sensation of my insides juddering even when standing stock still. This has resulted in a constant sense of vulnerability no matter what at any precise moment, my logic is telling me.

" Over the weeks, with persistent instruction, abilities returned for some.'

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The interior of an exploded house and kitchen encounters

Following confirmation of my stroke, medication immediately kicked in. First a blood thinner to keep the arteries flowing freely, coupled with a Beta blocker to lower blood pressure, slow the heart rate, and keep the arrhythmia (Atrial Fibrillation or irregular heart-beat) under control. A third medication was added to the mix to reduce excessive stomach acid (an inevitable byproduct of the other medications it would seem), and finally, on discharge, to aid with sleep and the liable anxiety arising from the whole psychological impact of the stroke, a fourth was added as vital support for my return to the outside world.

On the subject of byproducts (or, as they are better-known, side-effects), it is worth noting that the most common side-effect experienced by the majority of patients after a stroke is acute fatigue, often intensified by an individual’s response to medication. In many cases, it can be severe and destabilising; affecting concentration, stamina and confidence. This condition, demands regular rest during the day (which has certainly been my experience).

During my time in Handel Ward, there was an intense, structured, program for basic physical and delicate manipulative recovery, often of several sessions per day. Physiotherapy in the gym, and Occupational Therapy adjacent, in what could only be described as an exploded house interior, with the domestic elements scattered around two rooms.

In the gym, physio work was mainly between parallel bars for security and much needed support. Then, with a gradual building up of confidence, and a few stumbling steps achieved, simple games between and beyond the safety of the bars were introduced, developing leaning and balance skills. In other sessions, basic ball games for mixed ability patients were aimed at the sharpening of responses, and improving coordination. Boxing featured too; strengthening arms with jabs, hooks and upper cuts, plus there was always step work; relentlessly up and down on single treads at varying heights, wearing weighted black canvas waistcoats (bearing a chilling resemblance to bullet proof vests), with endless jokes flying around inevitably, to counter the perennial lack of confidence and unease we all felt at times.

At some point in the day – Kitchen Encounters. Opening cupboards, washing dishes. Horror of horrors- making a cooked breakfast. Topped off with sundry tasks such as, bed making ( duvets not allowed), loading and unloading a bizarre cardboard washing machine and pegging up a motley assortment of clothes.

Then, getting in and out of the front seat of a truncated car and always somewhere, stairs to climb – (tucked around a corner in this case). Over the weeks, with persistent instruction, abilities returned for some. But often, during the most challenging of physio tasks incredulity surfaced of a ‘ you cannot be serious’ nature – e.g. being asked to walk backwards – or stand with both feet together for sixty seconds EYES SHUT.

Seemingly less demanding at first, was the constant emphasis on the refining of basic motor skills – from catching balls to stacking coins. Relearning the art of bending down to retrieve a host of dropped items from a small cardboard carton to a credit card ; balance and flexibility constantly challenged, in preparation for a world where we were warned, gravity was king and the majority of items to be dealt with on a daily basis, always seem to end up on he floor. (So true!)

In hospital, all these activities were accompanied with a litany of phrases: ‘ Take your time ‘or ‘Listen to your body’, and when finally home, the inevitable and uniquely Irish – Mind Yourself – (more often than not, from taxi drivers, as I eased my way out of their front passenger seats).

The Irish Heart Foundation's 'Life after stroke' Facebook page provides much needed and vital support, for those feeling isolated, of which there are many.

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Home again and  Joni Mitchell

I have now been home for almost six months, and am able to face the changed realities of my life with the welcome support of an HSE Supported Discharge Package of home care; essentially comprising an hour each morning of domestic support provided by an out-sourced care company. Although I order food and other domestic necessities on line for home delivery, I do manage most days to get out and about to local shops. I am still learning to master the formidable tyranny of the ‘ sell by date,’ that had never bothered me till now.

At home, I am persuing my own personal program of physiotherapy – put together with staff from the department at Tallaght hospital – (performed to the minimal compositions of American composer – John Adams or the plaintive and mesmeric voice of Joni Mitchell). Also, I am fortunate to live a stones throw from the Meath Hospital Primary Care facility, and through contact with their community nurse have recently been under observation from its physiotherapy department, and I now master its own balance exercise regime on the premises, during weekly two hour sessions.

Additionally, since last October, I have returned to one on one yoga classes with the principal emphasis on regaining left hand and leg control as well as improving balance and inner calm. For a limited period, counseling has figured too (both weekly activities, privately funded).

Once a week, I attend the Irish Heart Foundation Stroke Group Meeting in Crumlin; there are also a further 21 such groups around the country.

These can offer eye-opening conversations with fellow stroke survivors alongside often challenging exercise workouts provided by Siel Bleu Ireland. Not all members are able to undertake these fully, due to their varied stroke relate disabilities.

One of the support group leaders introduced me to the private Facebook site called ‘Life After Stroke,’  which is run by the Irish Heart Foundation. It has proved invaluable in offering a forum for experiences to be related, questions asked and answers given. It provides much needed and vital support, for those feeling isolated, of which there are many.

Various facts and figures make sobering reading; for instance, over 1,800 people die from strokes in Ireland each year and of the more than 500 people on the Facebook page, an alarming number are in their twenties, thirties and forties.

" I am told I am doing well, though this is hard to perceive sometimes as I look out from this traumatised body at the world I previously embraced, hurtling around me."

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So after all this – what have I learned?

Primarily, that filling up every available moment with activity is no longer an option. I had been used to a life of fast – thinking, fast – talking and fast – walking.

PATIENCE, TIME and REST are the watchwords to constantly bear in mind now, and of course the most important of all – EXERCISE.

I have also learned, the long-term folly of neglecting what I refer to as The Hand That Time Forgot. It is easily done if the left arm and hand is affected. At all times, it must come equally into play with the other limbs, doing tasks that have never troubled it before.

I count myself fortunate that as a right-handed artist this is just one of the elements I have to deal with along my road to recovery. Every stroke survivor must come to terms with the unpalatable fact that the brain and body is in massive shock and incapable of ‘ bouncing back.’ any time soon. Both need all the help they can get.

I am told I am doing well, though this is hard to perceive sometimes as I look out from this traumatised body at the world I previously embraced, hurtling around me.

Though I still have the wrong kind of ‘ spring in my step’ (the left leg is apparently on an invisible piece of elastic) stepping out from my front door presents immediate challenges; a sudden gust of wind, a toddler’s shriek or a yapping dog dragged past on a lead, are all major threats to stability.

Strident mobile phone conversations behind you or in your ear, coupled with the general public’s constant blanking of any person displaying signs of a disability, all adds to the unease of being back on the streets. Crossing roads is panic inducing at most times, mainly due to speeding vehicles and wayward cyclists, absorbed by their playlists.

I walk at a reasonable pace again, but always with extreme caution, and carry a cane. I use it but rarely, (mostly to help negotiate the step up or down from a curb)

At home it is banished. But when inside, safe and sound, there are still a few ominous experiences lying in wait.

To combat these, I wear an alarm bracelet in case of falls, linked to a 24 / 7 monitoring service (to date, three minor falls only) but, even with grab rails, showers are still fraught with anxiety. Making or changing a bed with any degree of finesse is almost impossible, and trying to prise apart or open any packaging, is a nightmare, without exception.

By taking medication to thin the blood, cuts and bleeding are to be avoided; opening a tin of tuna with a ring pull is only marginally less scary than finding you have opened an actual can of worms.

Finally, another thing I have learned is the true meaning of the word Existentialism. Familiarity with this area of philosophic thought, has mostly eluded my waking days, too cluttered with the business of doing. Since my stroke however, its theory emphasizing the individual as a free and responsible agent in the determination of their development and ultimately – fate, has never seemed more apposite.

I now see myself clearly for who I am. A self-contained, 71 year old single male with a formidable focus, and a life that has been bound by pressure, discipline and intense work challenges for almost 45 years. I have many caring friends and neighbours, (primarily in the medical profession as well as the arts). Rarely have I needed to rely on ‘the kindness of strangers,’ (with the obvious exception of my recent hospitalisation.)

While I am endeavoring to remain positive about my progress over the past nine months, and into the coming years, inevitably I am still prey to the occasional Dark Night of the Soul (or more often in my experience, pale grey dawn).

Following a stroke, the egoic sense of self, built up over decades, is obliterated, leaving an unforeseen and alienating void. How this is filled during the lifetime that remains, is a daunting challenge for every individual and is not to be underestimated.

At the recent funeral of a dearly beloved colleague, plucked from our midst tragically early, I was overwhelmed by the response of coworkers, delighted to see me back on two legs, and, as far as they could tell looking reasonably well and healthy. “How soon would I be back at work?” was the welcome and common response.

Having survived a stroke, I have no choice but to go forward in a spirit of optimism. As to what further improvements I make along my new road, and where its destination lies, remains to be seen, and may just lie in the lap of the gods.

Joe Vanek –February 2020

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.

We are here for you

The Irish Heart Foundation’s nurse support line is available five days a week. Anyone living with heart disease and stroke who has concerns or questions about the coronavirus can contact the nurse support line on 01 668 5001 or support@irishheart.ie.

The Irish Heart Foundation’s new heart support group is on Facebook. Anyone who lives with heart failure or another heart condition or has a family member living with a heart condition can join here: www.facebook.com/groups/heartsupportnetwork/

The Irish Heart Foundation runs 21 stroke support groups and 5 heart failure groups around the country. All these groups have moved to telephone and online support. For more information, see https://irishheart.ie/get-support/.

The Irish Heart Foundation in conjunction with the HSE National Stroke Programme, has launched a new telephone support service for stroke patients who have recently been discharged from hospital. For more information, see here.

Please support our work

If found this article helpful and would like to donate to the Irish Heart Foundation please see here.

 

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