Being empowered, Healing, Heart, Hope, Life matters, Life medicine, My kind of people, Patient journey

‘CLICK & CONNECT’… why finding your tribe, is a UNIQUE and VITAL lifeline in a struggle…

You know how it is, your life turns upside down, while everyone else’s looks rosier than ever. Your Facebook feed is full of smiling family pics from the latest staycation hotspot (is it Donegal this week, or has it moved back to Kerry?). You even notice the odd ‘Playa de something or other’ creeping into the backgrounds these days. But in your ‘my life has gone upside down’ world, the playa seems like a scene from some Disney movie, whereas you are living in the reality of a life challenge that is more like Stephen Spielberg’s JAWS, including the dodgy music.

Now before everyone thinks I am having an awful week, I am not, I am just setting the scene. We have all been in our own version of JAWS at some stage in our lives, yes even the super smiley selfie takers. But at the same moment that we hit the bottom of our barrel/get the shark bite, it seems like the rest of the world, almost cruelly, is doing better than ever, smiling every time you see them, even laughing!

In your dire moment you just can’t relate to these people, especially when they talk about being worried about dining out options, because the bottom has just fallen out of that barrel you were crawling around in, and the process has involved being further exposed to the shark, a few extra bites and now having to nurse these wounds by yourself, because you feel sure if you show up bleeding on one of these playas, or dining out experiences, you’ll ruin the happy people’s selfies.

While our struggles are bad enough, the isolation of going through the struggle alone, can make them feel even worse. It’s not that our families and friends don’t try to ‘be there’ for us, but the reality is, that sometimes because they are not in the exact same situation as we are in, in that moment, despite best efforts to understand, it can be hard for either side to relate.

I remember in the high dependency unit, longing to hear that there was some other 38-year-old mother in existence who had been through exactly what I had been through, so that I could feel connected, less alone, less abandoned, less thrown to the wolves by life, and like there was some hope, that if she was alive, I might live too. Without meeting her, isolation took the place of company, abandonment took the place of connection, and terror took the place of hope.

It took me almost 3 years to find ‘someone like me’, someone who had survived that rare heart event called, SCAD (Spontaneous Coronary Artery Dissection) but even at that, she wasn’t fully like me because, lucky for her, she hadn’t needed open heart surgery, or hadn’t been left with heart failure as a result of her SCAD. Still, it was like both being ‘European’ in the Americas, we had some things in common, both parents with young children, both navigating the cardiac world in between the school drop offs and pickups, both dealing with the psychological impact of this out of the blue illness, and sharing that commonality of experience, which felt like a gift to my soul, because it validated, resonated, connected, and reassured me that I not alone, lost, or without crew, on the SCAD boat.

A number of years later, I met my heart failure buddies. Now these guys and gals were a real blast. Finally, people who I could communicate to about my wonky heart rhythms, ejection fractions, new drugs (steady on, cardiac meds is reference here), and also about things like the lack of recognition of the patient as an equal in healthcare, the lack of vital supports for heart patients living with life limiting conditions, the challenges of living with diagnosis in the real world in relation to mental health, family life, employment, financial instability, emotional trauma, purpose, hope and how to try and find our way in it all, while trying to help the next soldier entering the war too.

The emotional relief of unburdening and sharing, and the pleasure of discussing and advocating for patient issues, and the comfort of having such great feedback and support on real life challenges, was and still is interspersed with feist and humour too. You see we’ve all had a near brush, (or two, or three, or four) with death, the handy by products of which are, greater fearlessness (what’s the worst that can happen, I get a heart attack? Too late, I’ve already had one of those!), a greater appreciation for life’s irony (see you thought that flatline meant I was dead, but I was only fooling you), and a complete intolerance for bullshit (what do you mean it’s a super sophisticated, hyper extraordinary, technologically pioneering piece of equipment? All I want to know is, will it keep my heart beating? A yes or no will do). My kind of people indeed.

Where once we all had to trek around physically to find people like us, the blessed plus of Covid times (yes there has been one) is that we have technology at our fingertips, combined with a big societal shift that is encouraging us to find each other on WhatsApp, zoom, teams, a closed facebook group, a webinar, and in lots more technologically wizardy ways too. And geographical location doesn’t even matter these days, which means you can now connect with people like you literally anywhere in the world, yes, even in Donegal!

The perk of all this is that someday when you ask a question into some relevant group, you’ll probably get 15 replies all starting with ‘Yeah, I know what you mean…’ and that’s before you even get to the recommendations, options, solutions, phone numbers, addresses, or web links, which will be dished out by your fellow warriors to advance your moving to a better place.

Even without any problem solved, the identification, resonance, validation, company, experience, help, kindness, compassion, empathy, understanding, perspective, friendship, sharing, and general torch shining by others who have walked or are walking the same walk as us, in our darkest moments of the route, is pure medicine for our struggles and not the type that any pharmaceutical prescription, medical expert, or other professional, can deliver, because it comes from the heart of a fellow warrior, in the trenches with yourself, all muddied and starved and ravaged by the war, but still there, still fighting, still sharing the same experience, the same view, the same duties, the same fear, the same despair, the same weaponry, the same hopes, the same dreams, and if you’re extremely lucky, the same sense of humour too.

So, whatever the crises, do seek people in the same boat as yourself and hop aboard. These days, they are only a ‘Click & Connect’ away and who knows, you might find them nursing their shark bites on one of those Playas, or perhaps even somewhere in Donegal.

Le grà

Pauline O’Shea

© Pauline O’Shea

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Photo by Linda Eller-Shein from Pexels thank you Linda!

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