Care Free – A stroke survivor’s tale of life during Covid

By Joe Vanek Coronavirus News   |   20th Oct 2020

As Ireland enters level 5 COVID restrictions, stroke survivor and member of the Irish Heart Foundation’s Crumlin Stroke Support Group Joe Vanek, reflects on learnings from the first lockdown and shares some valuable coping mechanisms.

Is it perverse to be grateful for the timing of a stroke, or any other major life-changing illness for that matter?

In my previous article – Dispatches from the Dark Side of the Moon – I imagined courteous and benign gods, guiding me calmly and purposefully along an as yet unknown road to recovery. Struck down in the early summer of 2019, I was fortunate enough to benefit from three months of intense hospital rehab – in the MISA building at St James’s – and while writing the Dispatches article, had been at home with daily morning care, for five months.

I was getting out and about; finding my bearings through exercise classes at a local Primary Care Centre, yoga and the Crumlin Stroke Survivor’s Group meetings. I had even summoned up enough energy and determination to attend the Wexford Festival Opera and plays at the Abbey Theatre and the Lir Drama School at Trinity (where I teach stage design, on the Master of Fine Arts course). Also in the mix of ‘ getting my life back on track’ were several gastronomic get-togethers with close friends and colleagues.

I won’t claim that any of these diversions were easy to undertake, as I was still experiencing disorientating stroke aftershocks, but, little did I know then, that on the road I was so optimistically travelling, COVID 19 was lying in wait.

" Thus began, what I now refer to as my 40 days in the Lockdown wilderness,"

Joe Vanek

 

 

My free-care story

The HSE free care package was activated in September, and during the months leading to Lockdown, two care companies were provided. Company A, delivered an erratic service which provided more than a dozen carers, of variable qualities. Speedily replaced by Company B, due to the proximity of the festive season, implementation had to wait until early January. So for three weeks, I experienced my first taste of flying solo with no COVID clouds on the horizon.

By comparison, Company B was a well-oiled machine, providing the same two carers for weekdays and weekends. They were punctual and attentive, and all was progressing smoothly, until COVID 19, surged across Europe, infections spiraled, and it made its malign presence felt on Irish soil.

On Sunday, March the 15th with full Lockdown about to be announced, an unnerving incident (concerning the lax use of hand sanitizer and carelessness with protective gloves), forced an on the spot decision to start self-isolating. The carer was sent away immediately and I felt greatly relieved to be Care free. Thus began, what I now refer to as my 40 days in the Lockdown wilderness.

" A stroke is the equivalent of a volcanic eruption in the brain, resulting in death or a near-death experience,"

Joe Vanek

From restrictions to lockdown

On Wednesday, February the 12th, my physiotherapist Solomon Popoola printed my personal exercise program in the Meath Primary Care unit. His initial mixed ability balance class was during the first week of March, but a week later, it had been canceled indefinitely. Closing down this class, became just one small element within a rolling set of strict measures introduced by the government, once the primary source of the virus’s transmission became apparent: other human beings.

In common with most people, my initial response to the looming crisis and the need for a Lockdown was one of total disbelief. The outbreak, over eight thousand kilometers away in the Chinese city of Wuhan, was a grim reminder of the frailty of sprawling and overpopulated cities, not just in the far east, but worldwide. For the virus to present itself on the doorsteps of Ireland, and especially Dublin, seemed so unlikely, that I have to admit to initially being a curious but detached onlooker. That was until the trajectory of the virus, and the mounting death toll in its wake became impossible to ignore.

Throughout Lockdown, my thoughts focused a great deal on mortality. A stroke is the equivalent of a volcanic eruption in the brain, resulting in death or a near-death experience. For those that survive, the brain is in a state of trauma, with the body derailed and out of sync. The brain needs time to evolve and discover new pathways to help the individual get back on track. During this lengthy and often bewildering process, (and usually, we are talking years, rather than months) an individual may become introspective and withdrawn: an unwelcome symptom I have experienced, exacerbated by the whole Covid 19 phenomenon.

" I thought about the survivors of 2020, being thrown a double whammy in the form of a stroke and further cruel limitations imposed by COVID 19, How were they feeling? "

Joe Vanek

The stroke survivors of 2020

During my self- isolation, I constantly thought back to the previous summer (spent mostly in Handel Ward at the MISA building), and the hours of slow, agonized walking – with a frame – down its endless blue/grey corridors. For much of my journey, my eyes would be fixed resolutely ahead, fearing to look or even glance into the single rooms with their open doors, inhabited by patients in far worse predicaments than myself.

I also thought about the survivors of 2020, being thrown a double whammy in the form of a stroke and further cruel limitations imposed by COVID 19 (as if their worlds were not sufficiently turned upside down?) How were they feeling? How were they coping? Hospitalised still, or valiantly trying to manage at home with family and partners or maybe like me, solo with the creeping dread of COVID ever-present?

For most of my life, designing for the stage has entailed isolated periods of intense creative focus, in tandem with bursts of extreme social activity. I believe that over the years, I have honed the skills necessary for minding myself. Therefore, short periods of isolation were nothing new; self-isolation with stroke repercussions proved to be a very destabilizing experience.

In my solitude, I obsessed over electrical appliances failing. How would they be repaired or replaced? I feared for the unwanted invasion of my safe D.8 kingdom. How safe was it to let someone/anyone into the house? Then in April, around my birthday, the arrival of a package via DHL, and even innocent-looking envelopes, fanned the flames of mistrust. Suddenly, there was nothing more alarming than not knowing who or what posed a threat of possible infection.

" Ball throwing and catching, paper plate rotation for wrist flexibility, and the transference of coloured pegs around the rim of a bowl. All playing their part in strengthening the left hand,"

Joe Vanek

Coping Strategies

The stroke affected the left side of my body, leaving my head with a fuzzy, lightheadedness and an unwelcome sense of dislocation (which is still very much with me). I referred to this previously as a sense of existing on’ the dark side of the moon’. While my ability to balance and walk has returned speedily enough after 16 months, and my left arm is reasonably under control, the hand remains depressingly obdurate, demanding regular and repetitive exercise to wake it up.

Sad to relinquish my weekly one-on-one yoga classes, I incorporated several beneficial aspects of the discipline into my daily exercises; Mudra (or hand poses), were the starting point. Further hand exercises became less spiritual and more prosaic; ball throwing and catching, paper plate rotation for wrist flexibility, and the transference of coloured pegs around the rim of a bowl. All playing their part in strengthening the left hand, so that now I guide a fork towards the mouth with a higher degree of accuracy.

Though spoilt for choice of online exercise options (ably marshaled by Les Carroll, the Irish Heart Foundation Group Coordinator for Crumlin and Tallaght) I chose to stick mainly with the tried-and-true I’d grown comfortable with since returning home. These included the hand exercises, fast walking (forward and backward with small steps to negotiate), nine seated and standing exercises to further improve balance, plus a daily thirty-minute walk (weather permitting). But, life after a stroke is not solely about exercise: self-care needs to be addressed too.

What I have learned is a well worn but undeniable truth – never take your body for granted: it is now more vulnerable than ever, from falls to bleeds, calling for increased vigilance in all aspects of daily life. On an anticoagulant for the first time, I am amazed at the daily appearance of minor cuts, grazes, or bruises, but I try not to let them alarm me.

" The moment loss of smell was added to the COVID arsenal of symptoms, I made sure a single bloom was positioned close to my bathroom door, for a reassuring early morning sniff,"

Joe Vanek

A cautionary tale

During our early Lockdown summer, my garden has been a source of great pleasure, but also of potential hazards. One afternoon, in a fit of enthusiasm, I decided to cut some yellow roses and didn’t bother with gloves. I mean, what’s the worst that could happen? Answer – only a minor scratch on the back of the hand, drawing little blood. Then, when checking it a second time, I saw how close it was to the main arteries, (fanning out like the tributaries of the Mississippi river). A valuable lesson had been learned.

Happily, my roses possess an intoxicating scent. The moment loss of smell was added to the COVID arsenal of symptoms, I made sure a single bloom was positioned close to my bathroom door, for a reassuring early morning sniff.

Wise words

The worst aspect of Lockdown for me was a sense of friendships waning. Not simply because of physical absence, but in phone conversations that once were lively and informative but now felt bleak, with little or nothing to say. Friends’ fleeting visits with gifts of food, (to ease my dependence on the nightmare scenario of securing supermarket delivery slots), were tempered with profound sadness as we viewed each other masked across the permitted social distance: curbside to doorstep.

Yet the support of friends also added immeasurably to help me face the many daunting challenges of each day.

These positive and eloquent words are those of actor/director, colleague, Annie Ryan. “Practice inviting peace and calm in yourself. The truth is we are only and always in transition.”

Amen to that.

Joe Vanek. October 2020.

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

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coronavirus Covid-19 Joe Vanek stroke stroke carers stroke rehabilitation stroke survivors

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