Life in the Lean-to

The Baker family has volatile brains. People on both sides of my family tree have suffered strokes, and on this day in 2012 it was my turn. The most recent victim of this family curse was my poor Dad, in mid 2018, and his stroke was much more massive than my own.

I used to be a plucky & frequent traveller, but dread being cooped up on a plane post-stroke. Nevertheless, I’d been planning to make that long 18 hour journey to my hometown this year for Dad’s 80th birthday (a landmark that warranted me putting on my big boy pants). But Dad’s sudden stroke last year meant that I went down there ahead of schedule, in June 2018 (with my brother Jo) when all Baker siblings converged on the hometown hospital to offer support. Knowing from experience that the period just after a stroke is critical. 

I had not been to Armidale in 10 years (Julia & I were planning a visit in 2013, but were prevented by my own stroke in 2012) and the usual nostalgia funk of a visit to my hometown (which always carries mixed emotions) was compounded by seeing someone I love go though the horrors that I’d dealt with myself not so long ago. On my own D-Day in 2012 I was not always aware of the brittle emotions that loved ones experienced as they awaited my nerve-wracking outcomes, but in 2018 I had a ringside seat as Dad navigated that harrowing metabolic gauntlet, while we all anxiously waited.. Thankfully Dad survived, but will need constant care for the rest of his life.

I’ve visited 3 times since Dad’s own D-Day to offer what support I can (once in 2018 and twice in 2019) though my experience was very different from Dad’s. Firstly, a 48 year old body deals with such trauma better than a 79 year old body. Also, our affected areas differ (left side of my brain, right side for Dad) and thus the effects too. The causes of our strokes aren’t the same (haemorrhage for me and blockage for Dad). But most importantly of all, my brain damage is about the size of a large grape, whereas Dad’s is the size of a grapefruit. Seeing Dad’s brain scan made my scalp bristle; it’s amazing that Dad can function with that much of his brain destroyed, but he is the same person. In Dad’s own words; “I’ve still got all my marbles, but many of them are cracked.” Clearly his sense of humour survives, and he’ll need every bit of it now.

At stroke survivor/support meetings I’ve met computer programmers who’ve lost their ability to write code, and chefs who’ve lost the fine motor skills required to work in a kitchen. As a lifelong cartoonist, being robbed of my drawing arm was a devastating blow, and one I still wrestle with today. Dad is an academic, and therefore supremely qualified to spend his elder years happily in bed, surrounded by his books. However, his stroke makes reading and writing extraordinarily difficult for him now. Strokes are cruel in that they punch you hard in your self image, and what you most enjoy about being YOU.

The first few years after my stroke I was very narrowly focussed on recovery, trying to muster every bit of my diminished energy, and marshall my greatly reduced mental and physical resources into simply healing. Then figuring out how to navigate the ruins of my old life, now spread out around me like a maze. But as I’ve healed, I’ve seen more & more of my friends and family hit with their own traumas. Not a stroke perhaps, but maybe cancer, or the death of a loved one. 

Tragedy should be something we all prepare for, given our inherent human frailty, but we are often surprised when it inevitably comes, as if we are invulnerable, rather than frail little bubbles of mortality blown on the cosmic breeze. Of course, many people do believe in the immortality of the human soul, but even they have a very hard time dealing with grief & tragedy. Perhaps because grappling with diminished abilities and acceptance of our physical frailty & impermanence is something our society doesn’t talk about. In fact, ‘acceptance’ is often seen as tantamount to failure, but I don’t think of it that way. Active acceptance has been a big part of finding peace in my new life.

Last month, when I was most recently with Dad, we often talked about dealing with our diminished abilities. Given the vast differences between our strokes, the best advice I could give Dad about the bomb that exploded in his brain amounted to this;

Your life will never be the same again. You constantly crave what WAS, and feel the loss of what you can no longer do. But after a setback, it’s important to make that effort to sculpt something new out of the leftovers of your life. Even if you’re not exactly sure what you’re making, as you make it. Your old house is gone, flattened by the explosion.. and yet, you can build a lean-to out of the ruins. Perhaps in time, even a nice little cottage that you can be genuinely happy in.

Dealing with setbacks is a constant, and a big part of living a real human life. Stroke, or no stroke. Our movies and stories mostly end in success. There’s a setback in the 2nd act, but then a rally and triumph; ‘THE END’. Whereas a real life setback may be permanent. When we are hit with such a true tragedy we are often flummoxed, as are the people around us, who might be grieving themselves.

To provide people with the tools they’ll inevitably need to navigate such times, we need to share more stories – both fictional and from real life – about making a satisfying life in reduced circumstances. Not a Hollywood style ‘Happy Ending’, but showing that a rewarding life is possible after ‘failure‘..

17 thoughts on “Life in the Lean-to”

  1. Jamie! Your words are eloquent and inspirational. I’ve missed those days working together, and will always appreciate your support and kindness; never taken for granted. Thanks for the wisdom and friendship.

  2. James,

    My son would say I am stalking your stories.
    To write from the heart with such clarity is a gift. To share it is a service to all.


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