Most of us know someone for whom life has been irrevocably changed by an event that is largely beyond their control; a divorce, an unplanned pregnancy, a pandemic, the outbreak of war. These life-changing events can be sudden and blindsiding but usually, when the immediate impact passes, life returns to a new normal. We may have changed somewhat, but we are largely the same person in different circumstances and people see us as such.
But what if an irrevocable life-changing event is so profound that it is not possible to reach a new normal that remotely resembles our life before? Are we profoundly changed as a person, or is it the way that other people see and respond to us that is profoundly different?
Profound changes to our physical capabilities and cognitive capacity may occur due to critical or chronic illness, disability, even old age, but our desires, our likes and dislikes, our ambitions, religion, politics – our worldview often remain unchanged.
If you ask residents in aged care, most will tell you that what they see when they look in the mirror does not match the person that lives inside their head; our bodies may deteriorate, our cognition may decline, but the same person still lives within us.
person, as written by B.J Neblett, is:
“…the sum total of our experiences. Those experiences – be they positive or negative – make us the person we are, at any given point in our lives. And, like a flowing river, those same experiences, and those yet to come, continue to influence and reshape the person we are, and the person we become. None of us are the same as we were yesterday, nor will be tomorrow.”
B.J.Neblett 1
The development of “self”, as influenced by our life experiences, is a slow-burning process over a lifetime – life’s ups and downs may sharpen our edges or round off our corners, but our core identity remains.
When a sudden incident or illness means that life will never be close to the way it was before, it may seem to others that a person’s core identity has suffered the same unrecognisable change, but this is rarely the case.
Such unrecognisable change shaped the life of theoretical physicist, cosmologist and author Stephen Hawking. When he died in 2014, Hawking had lived with Motor Neurone Disease for more than 50 years. This debilitating illness slowly eroded Hawking’s physical capabilities and changed his physical appearance, but his vision and his intellectual curiosity remained unchanged. Despite losing all mobility and the ability to speak, Hawking continued his ground-breaking scientific research, writing papers, theorems and books, which won him prestigious awards for his work until a couple of years before his death. Hawking said he preferred to be regarded as:
“…a scientist first, popular science writer second, and in all the ways that matter, a normal human being with the same desires, drives, dreams and ambitions as the next person.”
Stephen Hawking2
When a disability, illness or condition is seen before the person, the identity of that person becomes overshadowed and undermined. I have some personal authority in making this claim: at 19 years of age, I was struck down by an auto-immune disease that was to devastate my life as I knew it:
My Story
I had gone to bed unaware that I was anything but healthy, but when I put my feet on the ground the following morning, I was unable to bear my own weight. What followed was decades of pain, immobility, confusion, frustration, drugs and their side-effects until finally, I was lucky enough to be accepted onto a course of treatment that put my disease into remission. What hurt, almost as much as the physical pain, was the change in the way people behaved towards and around me.
The same friends I had been nightclubbing with only weeks before, now spoke to me in hushed tones, as you would to a small child; with a slight tilt of the head, they would ask, sympathetically, about how I was feeling. Conversations would stop when I entered a room – my friends were afraid to talk about normal life around me, because my life was anything but normal. They assumed that I would not want to hear of nights out, new loves, that fabulous pair of shoes. They saw my illness and disability before they saw me, their friend; to them I was altered and our relationship was different. Not being included in their conversations about “normal life” made me feel abnormal, isolated and devalued. These were good people, caring and considerate friends, but the hurtful impact of their changed behaviour towards me did not match their intention of protecting my feelings.
It is easy to forget that our intentions, however well-meant, can be unsolicited, unwelcome and unhelpful. If we launch our arrows of good intentions without first understanding their impact on our target audience, we risk missing the mark or worse, causing harm.
J’s Story
A young friend of my family suffered a catastrophic accident at the home of his pal one sunny summer afternoon – a momentary lapse, that left him an incomplete quadriplegic.
Prior to his accident, this fit young man was a gifted footballer, a strong and active teenager with every opportunity in front of him. It was a devastating time for him and for all who cared about him. In dark times like this, it is common for friends and loved ones to experience feelings of helplessness; we scratch around, desperately searching for something positive to say that might improve the outlook of the situation.
I remember going to see our friend in the earliest days of his rehabilitation; to soothe my own feelings of helplessness, I trawled through medical research, searching for innovative treatments for spinal cord injuries. Having learned of successful trials using electrical implants, I was excited to offer my friend the hope of being able to walk again – his response was not what I expected: he told me how frustrating it was that everyone thought his main goal in life would be to be regain the ability to walk; in actual fact, his main goal was to be able to manage his personal care without assistance, which would restore some of his privacy and dignity and allow him to spend time with his friends, without embarrassment or the guilt of feeling like a burden on them.
His second priority was to be able to improve his hand function, so that he could hold and let go of a bottle, enabling him to “crack open a frothy”. The realisation of my mistake hit me like a road-train: this was still the same person, albeit in very different circumstances. His interests, his likes, his dislikes, his love of football, of having a beer with his mates remained unchanged. I had been clumsy; I had seen the outward signs of my friend’s disability before I saw the person I knew him to be; I had made assumptions when I had little idea of how much the accident had impacted on every aspect of his life and no understanding at all of how he felt about his new situation – because I hadn’t asked him. The next time I visited, I took him the latest footy magazine, something I had previously thought would be an unthinkable gaffe – he was delighted with it!
Theoretically, a life-changing event could happen, or start to happen, to any one of us by the time we have finished reading this blog. We all know of people in the public eye for whom this theory has become a reality:
- athlete and mining engineer, Turia Pitt, whose life and appearance were irrevocably changed when she was trapped in a bush fire during a marathon;
- Christopher Reeve, known to us all for his super-hero action movies, lost much of his mobility following a riding accident;
- AFL star Adam Goodes suffered life-changing mental health issues following an unexpected life event.
All of these people have continued to pursue the things that were and still are important to them despite their dramatic change in circumstances. The courage and generosity of these celebrities and others, who are sharing their experience of life-changing health issues via the media, are helping to shine a light on the issues and challenges that frustrate millions of people every day.
Personal insights, from people in the public eye, eloquently demonstrate that though life may change how we are, it doesn’t necessarily change who we are.
Despite high-profile advocates, progress on accessibility is slow. Having experienced mobility issues myself, I have a heightened awareness of the accessibility fails in so many places: from cafes with disabled toilets but a corridor leading to them which is too narrow for a standard wheelchair, to venues with steps and no ramp.
People with mobility issues are like the rest of the population; maybe we love to drink coffee, go to the beach, the movies or shop at the market – maybe we don’t; but we do want the choice and the ability to make that decision for ourselves.
At some point during the pandemic, all of us experienced being denied access to things that we want or need. Whether it was not being able to leave our homes, not being able to access the gym, or the library or not being able to shop for whatever we needed whenever we wanted to – we have all experienced barriers to doing or getting what we want.
Were we altered by this dramatic and unexpected change to our lives? Possibly. Maybe we are a little more appreciative of family and friends, maybe we make fewer excuses for not going to the gym, but most of us were the same person in new and very different circumstances.
My years working in the aged care and disability sectors offered me the great privilege of really getting to know our clients beyond their care needs. Time spent talking and listening to your clients and what makes them who they are, who they have always been, is a wise investment in avoiding conflict and behaviours of concern that would require far longer to manage: Below are two examples of how knowing your client better can avoid a difficult and distressing situation or even a crisis:
A Supermodel
“S”, a client in an aged care facility, had been a supermodel. For most of her life, she had dressed in beautiful clothes from the most exclusive fashion houses in the world; her family often brought her high-value clothes of the quality she was used to. Inevitably, the high-volume laundry processes of an aged care facility could not provide the delicate care that these items required and many of them were ruined. When the client’s daughter informed the management that her mother’s expensive clothing had been incorrectly laundered, she was asked to provide cheaper clothing for her mother, as a remedy for the problem. The daughter was affronted by this suggestion and lodged an official complaint to head office about the facility and the care being provided to her mother.
The intention of the manager was to remove the distress being caused by the client’s expensive clothing being ruined in the facility’s laundry; The impact of his suggestion however, was that the daughter took offense on behalf of her mother and made an unjust association between the lack of care for the clothing and the standard of personal care her mother was receiving.
A great deal of time was spent by staff and management, both locally and at head office, in investigating and resolving the complaint.
The vital triangle of trust between client, family and service provider was compromised.
Had the manager understood who the client was beyond her immediate care needs, he would have understood that what made her feel whole and secure had little to do with the quality of her clothing but everything to do with maintaining her identity – for this client, the way she dressed was an important part of “self”.
A War Veteran
“L” was a war veteran who suffered from Post-Traumatic Stress Syndrome; he also had dementia, but his long-term memory was excellent. A sensitive conversation with him was all it took to unlock a invaluable insight into his behaviours of concern: Understanding that our monthly fire alarm tests triggered this gentleman’s anxiety, by evoking traumatic memories, was a breakthrough in managing his wellbeing and the safety of our other clients and staff; though we were unable to avoid the mandatory tests, we were able to schedule a coinciding activity into L’s care plan that meant that he would not be triggered by the sound of the alarms.
It is vital, when caring for someone of any age, with any type of challenge, that we see the person first and foremost, putting them at the centre of everything we do and say. A simple “memory board” at the entrance to a client’s room can offer opportunities for staff and clients to connect, providing clues as to how we might tailor a person’s care in accordance with their individuality and avoid harmful insensitivities.
It is well documented that a person who appears to be wholly changed by the ravages of late stage dementia, can still be reached with a familiar song; the person will often “come to life” singing along, word perfect, whilst visibly experiencing comfort and enjoyment from their positive reminiscences and there is evidence that these periods of clarity last for some time after the music stops.
I have had the privilege of witnessing this wonderful phenomenon and need no further proof that, though we may be shaped by everything that happens to us, at our core, we remain true to our “self”.
I would encourage anyone who works in the caregiving profession to view the following video, which perfectly illustrates the benefits of person centred care for both client and staff.
References
- George (Part One) by BJ Neblett © 2009
- Stephen Hawking https://physicstoday.scitation.org/do/10.1063/PT.5.030870/full/ 2015