I didn't see it coming. Before I knew it, nearly everything I valued and had earned disappeared. I remember the exact moment when it dawned on me that the life I had known was over, and I clearly recall lying in my hospital bed with these words echoing inside my head,
“So this is how it all ends, with a whimper.”
It was about nine months earlier that I began to wonder whether something – I didn't know quite what it was – was beginning to happen to me, something depleting, something grinding me down as if somehow somebody had increased the strength of gravity all around me. I was getting tired, sore, lethargic and everyday activities were beginning to take far longer to perform than they had in earlier times.
One's vision in hindsight is always so very clear, but these insights are not particularly useful when it comes after the fact. During the period where it all was starting to go wrong in early 2009, I had no real inkling that my days of independent living were coming to a premature end. Just as a frog stays in the bottom of a saucepan of water if the heat is slowly increased from room temperature to boiling point, I remained blissfully ignorant of the true extent of the changes occurring inside of me.
The reason for this lack of insight, I think, was that the narrative that was going on inside my head took every piece of evidence that I was experiencing a deterioration of my disability (such as pain, fatigue, changes in skin sensation and reduction in strength) and attributed it to a range of other causes. This was not a conscious form of self deception, I just seemed to pass off these changes as occurring because I was over tired and needed more rest, or needed a holiday, or had been working too hard, or been going out too much, or had injured myself due to some external reason – I filled my head with all manner of excuses and explanations. And I believed every one of them.
I sat there in my castle of self delusion waiting for things to improve, and I kept believing that things were just about to get better, I just had to hold out until I got more sleep, or until the weekend came and I could rest, or until the next time I took annual leave – every excuse or explanation had its corresponding remedy, I just had to sit tight and wait for things to resolve. My mind was ignoring what my body was saying.
It was at this time that I really began to feel the strain mentally, I was finding it increasingly difficult to keep all the balls that made up the juggling act that was my life in the air simultaneously. Balancing work, friends and family obligations with the enormous burden on my physical and mental resources that living independently placed on me became increasingly difficult until figuratively the entire superstructure collapsed taking me, literally, along with it.
In April 2009 I had two falls from my wheelchair in three days, both occurring in my own home. I landed in hospital with a significant concussion and other resultant injuries. As it happened, just a couple of days prior to my first fall, I had taken a weeks’ leave from work on the recommendation of my GP to recuperate from exhaustion and the pain I was experiencing. Whilst hospitalised post-accident, investigations were conducted to try to deduce and better understand what was happening to me.
It was then I began to realise that there was a reasonable chance that my congenital neuromuscular condition had awoken from its slumber. I will discuss this more completely elsewhere, however up until this point – age 33 – I had believed since childhood, based on the best medical advice available, that the damage to me from this disease had occurred primarily in utero. I had always thought, and again quite reasonably so, that after ravishing me as a foetus, this disease had become permanently dormant; its malevolent mission complete.
In later years, I learnt that my disease is almost certainly caused by a genetic mutation, But in the 1970s and 80s as I was growing up, and continuing into my adulthood, my family and I believed what had been the medical consensus at the time; that my neuromuscular condition was likely the result of some type of illness or affliction my Mother probably suffered during pregnancy, of which she was unaware at the time. This, then, resulted in damage to the foetus of the type that would lead to an inability, possibly as a result of the denial of certain types of amino acids or proteins, in my muscles to grow and develop correctly.
To me, before I understood (with the benefit of modern testing) the genetic basis of my condition, I imaged that a battle had been fought before birth, one which I had lost. I pictured the process in military terms, the disease had launched a surprise attack at the time in which I was most vulnerable (i.e., in the womb) and had scored a relatively easy victory, reminiscent of Hitler’s invasion of Poland. The goal was not to completely destroy me, although there were times in my formative years where this nearly occurred as I suffered illness after illness.
The cellular destruction subsided and the enemy inside me shifted from aggressor to occupier. It ceased open hostilities and allowed me to live beyond infancy and build a life for myself. Yet it was a life under the jackboot of this mysterious occupying force. I never forgot that it dictated much of what I was permitted to do in life, as it controlled my body. But I came ever more aware from the earliest days that I controlled my mind, not itself an insubstantial entity. Life flowed more harmoniously, however, if I avoided conflict between these adversaries except where absolutely necessary.
As I grew and developed physically, and as my confidence and faith in my own abilities and intuition rose, my mind prevailed with increasing regularity. I liken these instances to the victories won by the Vietcong during the Vietnam War. I would attempt to outwit my foe, to succeed using unconventional methods or alternative means of performing tasks, thereby, in a sense shifting the battlefield. I knew that in a direct clash between my brain and my body, in the absence of utilising some small speck of ingenuity or creativity or otherwise altering some of the variables in my environment, my disease would control the battlefield – especially when the problem was strength or mobility related – and hence would win.
I had been told quite often over the years that as I got older, I would experience a decline in my physical capacities to a greater extent than a non-disabled person would. It made sense, as when people age their bodies slowly deteriorate over time but it is not until a person becomes significantly elderly that they generally experience significant impairment of function. This is because most people as they go about their daily living tasks are operating at only a fraction of their total physical capacity primarily as a result of our modern lifestyles and creature comforts. So whilst as people age their physical capacity declines, they usually have significant reserves to call upon so that it is only when these reserves are substantially depleted as the ageing process becomes considerably more advanced, that major age related disability results.
I will discuss this in greater depth elsewhere in this blog, but living independently as I did for a decade placed an enormous strain on my body as I needed to operate at the upper limit of my physical abilities simply to complete the basic tasks of daily living such as showering, cooking and going to work. For example, my weekday morning routine (as I would call it) could take anywhere from 2 to 2 1/2 hours just to shower and dress myself before work.
My independence was the most important thing to me, and I considered this physical burden to be merely the price to pay to live as close to a ‘normal’ life as I could. At that time, I would not have changed anything; my independence was at the heart of self identity and it defined who I was and who I understood myself to be. It was never negotiable.
Consequently, in the back of my mind I always knew that I would likely begin having increased physical difficulties by the time I entered my late 40s or early 50s. That was based not only on the neurological advice I had at the time but also my own subjective assessment of my own physical functioning and stamina.
I never suspected that by the time I was 34 my independence would be taken from me by the enemy I had always imagined I would outrun, at least for longer than I did.
I believe I did all in my power to recover as quickly and as completely as I could. I went through an exhausting period of in-patient physical therapy and a graduated return to work. Still, I felt it slipping away, it was like I was in quicksand; the more I struggled, the deeper I sunk. The greater the pain grew, the more intense the fatigue and I felt I was trapped in an ever descending spiral until in mid-2009 I was so debilitated that I could barely sit up unassisted.
I was hospitalised again for a second time in three months, and was bedridden for close to a fortnight. It was at this time that those closest to me began to appreciate the ramifications of my deteriorating functionality. I refused to accept the medical advice I have been given, that my neuromuscular disease had worsened irreversibly and now I was no longer capable of caring for myself independently and that my condition was most likely to deteriorate with time.
I refused to give in, and I pretty well considered that everybody around me was completely insane. I could not understand why people didn't realise that all that was happening to me was temporary, all I needed to do was heal, rest and recuperate and I would then be able to resume my life once I had taken time out to convalesce.
I agreed to stay with my Mother until I recovered and I genuinely believed I could turn my fortunes around, even if all I could use was the strength of my own resolve. My Mother modified her home to more easily accommodate me at significant expense to her. She could not have done any more than she did to love and support me through this period, as did my Father, my Sister and her husband and my close friends.
I took extended, unpaid leave from my job. I had hoped to receive income protection payments; given that I paid compulsory premiums as part of my superannuation arrangements, but the insurer in their eternal wisdom and infinite mercy chose to disallow my claim on the basis of pre-existing disability. I can only hope that the trustees receive the same treatment should they ever end up in a similar situation.
I never returned to live as I did in my unit, nor did I ever return to work following this second hospitalisation. Much happened in this period, and there is still so much that is unfolding and will continue to change as my life continues. I will talk more about this elsewhere, but I can't help but internalise this entire chapter of my life as the time ‘I fell’, not just literally but psychologically.
For so long I arrogantly considered that I could meet any challenge, that I could out-think any problem and that by operation of the sheer force of will power alone I could see off any threat to the life I had created for myself, or to my independence more particularly. I definitely had a degree of hubris and some sense of satisfaction in my own achievements. I often looked at other people in wheelchairs who might not have been fortunate enough to live in my circumstances and think to myself that I had somehow solved the riddle, and they had not.
I never believed that I was better than anyone else, but I certainly thought – and I think that it probably came across, as well – that I had unlocked something, that I had access to something (maybe it was access to a more ‘normal’ state of being, I'm not sure really what it was) that they did not. Maybe it was that, considering I use an electric wheelchair, being regarded medically as severely disabled – I thought I was a member of a small elite club, those that escaped somewhat the confines of their disease. I guess it is not that dissimilar to people who come from disadvantaged backgrounds to achieve fortune and fame whilst forgetting, or not acknowledging, their more humble origins.
I have learnt a very hard, and probably not undeserved, lesson. I have felt, and continue to feel, enormous shame, guilt and embarrassment about what has happened to me and how quickly I ‘capitulated’. Intellectually, I realise that these feelings are misplaced but I feel them nonetheless. I can't help but wonder whether – if I had my time over again – there would be anything I could have done, should have done or should not have done that somehow may have changed the outcome, but I know that such thinking doesn't serve any worthwhile purpose or effect my life as it is now.
I understand that dwelling on the past can't change the here-and-now, but sometimes I question some of my choices and wonder whether I tried to over-reach. There are times, quite often, when I think of the tale of Icarus in Greek mythology and I see myself in that story. I wonder, Did I try to fly too close to the sun?