Every disease is a heart disease

My father had trouble sleeping. He’d been that way for about five years but I only really appreciated it one night, at 3am, when clearly I was having the same problem. We shared the same symptom of different afflictions. One day dad, looking like a walking wax figurine was taken by bus from the local 24 hour clinic to a special facility nearby dedicated mainly to people suffering from mental illness and recovering from substance abuse. His illness was less of the mind and more of the brain: Parkinson’s Syndrome. He was finally diagnosed with it at the facility after a couple of years of confusing and almost heartbreaking under and misdiagnosis. Mum would become a quasi expert on the syndrome as part of her uncompromising efforts to support her husband. I knew Parkinson’s basically as a deficiency of some substance called dopamine; which meant less to me than the fact that it meant dad suffered, in addition to sleeplessness, a debilitating constriction of his muscles and organs that would only get worse until his death. Not to mention the associated anxiety, depression and other spin-off symptoms. Those things were all I needed to know. I’ll never forget that day at the clinic, when I gave him a hug before he got on the bus and worried it might be the last time he would even register an act of affection between us. We still weren’t sure what was wrong. And we were hardly relieved by the eventual diagnosis; even though, with the right medication and environment, at a glance he seemed no different from any healthy man in his late-50s or early-60s. In fact this appearance of relatively good health was often actually a cruel source of misunderstanding. To put it in perspective: no one is surprised at the one legged stranger’s inability to sprint. My father’s body and mind were quite healthy, but he wouldn’t have wished his brain on his worst enemy.

It was those five years later that my restless thoughts turned to dad, who was once again at the facility after apparently suffering a dramatic escalation of the illness. While visiting him a few days earlier he’d mentioned his loathing of the prospect of, once again, trying in vain to gain more than an hour or two of solid sleep in a hospital room and bed that during not quite two weeks had both become associated with further defeating memories of insomnia. During recent history the cause of my sleeplessness, besides normal things such as noise, heat and discomfort, had been the prospect of surfing the next morning. Understand, after more than 10 years of surfing, it wasn’t fear which kept me from resting; it was anticipation. As far as pastimes go surfing was the second longest activity I’d committed to, next to reading, during my 28 years, and such things have a way of deeply affecting the mind – not to mention the heart and soul. I guess for dad it was life and the prospect of spending the rest of it progressively more ill that had caused him, like me, not fear but exaggerated contemplation within an atmosphere forbidding of sleep. Perhaps, for him, sleep was at once literally a dream from which he would forever more wake to the nightmare of Parkinson’s, and something the very same curse kept from being firmly in his possession. For me, at the time unemployed, girlfriendless and with few close friends, I guess sleep was something my sub-conscious knew I could do any time even though I’d try to do it at those times considered “normal”.

It was raining that night, but still warm and windless. I thought of dad when I put down a magazine while smoking under the back veranda. I hoped as all family of people with illnesses probably do sometimes that I had momentarily taken on a symptom of his disease, if not the disease itself, and relieved him of it for a blessed eight hours. But I knew this was almost certainly not the case and he was lying awake on his too soft hospital bed or on the floor in front of it – trying with cruelly ironic exhaustion to fall asleep. That (usually) simplest and most common of human occupations. Everyone reacts differently to sleep deprivation. For me it can cause agitation, a lack of focus and even a strange sense of delirium. Because at the time I had so few obligations beyond those potentially pleasurable the sleeplessness did not, as it had while employed, cause me any depression or anxiety. For dad it was different. During his 20s, he was a professional footballer. When he was forced by injury to retire he became a pro-businessman and pro-father then pro-grandfather as well. Like the vicious syndrome attacking his very livelihood, his passion for being needed, being respected and being the best at every small and great thing he did had only grown all his life. Until, of course, his passion for life and Parkinson’s passion for dragging him down had clashed. The battle, though ultimately decided, rages on, but it’s a silent conflict. And for all the support my father has from his family and friends, it is also a very lonely fight. Because as the troops fall and the injuries mount, he is forced to spend more time with the people who know his disease, and less time with those who know – and love – him.

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