Life lessons living with a spinal cord injury - Forward Ability Support

Life lessons living with a spinal cord injury

This article has been submitted by one of our members who wishes to remain anonymous. The views are of their own.

Well, there have been some personal triumphs shared by Forward contributors. Truly courageous to put your story of decades into a few paragraphs.

Like them, my physical change came as a shock. Professional accountant. Grade rugby training as a 35 y.o. fourteen years ago. In a coma for weeks, C3spinal (neck down, i.e. tetraplegia) and the slow slog of recuperation and managing every day, still continuing 740 weeks later.

I used the shock of changed attitudes to my professional competence to not just call out this crazy new normal (that’s easy but pointless) but to suggest solutions, always bringing in others. Grumpy confrontation is self affirming but doesn’t get ‘the room’ onside. No one listens to whingers.

Somehow I ended up being on a number of advisory boards, local, state and federal. From a ministerially appointed and reappointed Chair of the Disability Council of NSW for years, to a similarly Ministerially appointed panel advising the Board of the NDIA. The accountancy training helped in calling out feel good arguments that had no evidentiary legs–always with a smile.

So the following are life lessons that have got me through the shock. Many unforeseen events–many potholes, the occasional bridge collapse. I envy the courage of others who’ve written in this forum. I’m just a journeyman compared to them.

1. If you focus on the daily regime of pain, and heavy meds, you’ll remain their prisoner. To the chagrin of some lazy medicos, all pain meds habituate (i.e diminishing effectiveness over time/ dosage). Have you ever noticed how pain vanishes (temporarily) if something unexpected, distracts? The proverbial dog jumps on your bed, surprises and pain vanishes for a few seconds. There are clinically proven therapies that successfully use this ‘gate’ theory of pain relief. It works for me but you need the discipline of habit and a trusted mentor.

2. I somehow came to see my failed body from the point of view of an observer. I’m a man of Faith, although not a Buddhist but know that they have a similar outlook. I get my detached mindfulness from daily deep prayer. The body is just a vessel. The soul, spirit, personality is not constrained by the physical body. Somehow unemotional observation gives a considered detachment from the hurly burly of the occasional incompetent carer nearly dropping you out of a sling or leaving you with an infection from a wrongly placed catheter etc.

3. Don’t confuse family with professional caregivers. Too much reliance on family, spouses is a false economy and for some a relationship killer. There I’ve said it.

4. You’ll learn to manage your time and energy levels –To prioritise. I have to allow 3 hours from around 0700 for the most basic morning routine, and around 90 minutes for the most basic pre-sleep routine. Every second day there’s training. Trite but true that physical training habits have kept this now 49 y.o. (with a brittle 69 y.o. body) alive–Physical immobility results in low lung capacity (lung infections) reduced bone density(brittle bones)etc etc. There are machines (like my RT300-look it up) that have my muscles top and bottom wired up like an arcade game. It’s intense and sweaty and fourteen years later the physical benefits and endorphins are testament.

5. Whether you’re so called ‘able bodied’ or otherwise, it’s a continually interesting world outside. So find out what grabs you intellectually and pursue it, really pursue it. I have an agenda to get some last century NFPs to work together, to synergise for their clients so finishing my MBA at the AGSM opens their doors. For you, it might be your passions in the arts, sciences, the classics. Much better than the default of ‘World of Warcraft’ etc etc on a flat screen in a darkened bedroom on your own.

6. Many of ‘us’ end up with a sizeable financial payout often from insurance and/or free property/assets. Regrettably, you will over the years (not just ‘may’) be preyed upon for assistance. I’ve seen appalling examples amongst peers. Perhaps similar to ‘elder abuse’. Refusal–often to family/ extended family is toxic to all.

I need every cent for my therapy over the decades.

Two solutions that have insulated me are (I’ll try and put this politely) having a completely trusted (and polite) Rottweiler, actually an extended family member, who has a power of attorney over certain accounts. We both spent different times, decades ago, in the Army Reserve. There’s a concept in combat assault drills of the ‘IA’ (the instant action)–If the enemy takes various actions, you have a considered response planned, coolly, well in advance.

I come from a very large culturally diverse extended family, where property, assets, funds are culturally seen as communal. So when I get the inevitable “Uncle I need to go to the funeral of X in (overseas), I’ll pay you back when I get back’ etc etc, I have an authentic response, “that’s important, please call (name),you know him, he handles my bank accounts. Of maybe 30 requests over more than a decade, none have called him.

7. For those like me who need on occasion to have highly skilled 24/7 in home residential care, a small shared home (e.g. 2 others) of compatible house mates is simply more cost-effective and with better emotional outcomes–and always with a surprising sense of humour/ the absurd than being alone in the suburbs with a panic button. Having said that, any more than 3 in total I find and it becomes less a home and more like an institution and its complications.

8. For dealing with medical professionals, and major investment decisions have a group of trustees, professionals who command respect. I’m blessed with mine. For no recompense, these three who didn’t know each other before but are now close friends have set up, and direct a tax effective trust structure that has weathered my unpredictable fates. They are my constant foundation. Their solidarity has kept me alive. Its inexplicable. They’ve been with me since soon after I came out of my coma, I wish I could name them in 100 point font here.

9. Some takeaways from elsewhere? I’ll try and summarise three volumes, over 2,000 pages of what is colloquially known as the ‘Vaillant’ study. The Harvard Medical School, commencing 1942 and continuing over the next 75 years following, questioned 268 of 1942/3/4 Harvard undergraduates and 468, non-university local youths of similar age. Continued testing, interviews and monitoring over many parameters until their early 90s. Over many, many confirmatory data points the conclusions for longevity and emotional health, resilience resonated:

Traits, habits that mattered:

  • Social connections
  • Forgiveness
  • An ironic sense of humour (literally a shrug of the shoulders: “Go figure’)

10. And finally “A main conclusion is that the warmth of relationships throughout life has the greatest positive impact on life satisfaction. Put differently, the study shows: “Happiness is love”