A disability or a blessing? (or both?)

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From Luke’s Journal 2018 | Disarming Disability | Vol. 23 No. 2

Diseases and disabilities are things that happen to ‘patients’, that is to say, ‘other people’. They do not happen to doctors, especially not to me.

Over the past decade this optimistic fantasy has been gradually replaced by reality.

From the age of 30 to 60 I did not notice any ageing. My height, weight, energy and fitness seemed very stable. Then I began to notice small signs of deterioration. Brushing my teeth became slightly clumsy. My handwriting was less fluent and I could no longer sign my name automatically, without thought.

I had surgery on my right hand to relieve nerve entrapment in Guyon’s Canal. Instead of the expected restoration of dexterity, the clumsiness in my right hand continued to worsen. I developed a slight limp in my right foot. When she noticed some twitching, my wife, an experienced GP, even wondered about motor neurone disease.

No! I do not want that! Is this some kind of cosmic joke?

After appropriate investigations my neurologist announced, “you have a progressive extrapyramidal degenerative condition, probably Parkinson’s disease”.

No! I do not want that! Is this some kind of cosmic joke?

For many years I had used the following question in tutorials with medical students. “If you could choose the way you will die, would you prefer to die suddenly and unexpectedly, or slowly and predictably?” On average, two thirds prefer a sudden death. I always said I wanted a slow death (with no symptoms, and expert care by a palliative care specialist), so that I had plenty of time to prepare. I could almost hear God chuckling, “Would 10 years be long enough? 15 years?”

That was 11 years ago. I do indeed have Parkinson’s disease, but it has progressed very slowly. I can still safely drive my car and use my two beloved chainsaws (to my neurologist’s horror). On wakening I am rather stiff (rigidity) and sluggish (bradykinesia) but so far, I have no tremor. I have not fallen, though I might agree that I am ‘a falls risk’. From my perspective, my biggest handicap is a soft voice and slightly mumbling speech (hypophonia and dysarthria). An hour after my first morning dose of Madopar, my nervous system function is almost normal.

… we have no way of knowing when our time is up, we will then begin to live each day to the fullest, as if it was the only one we had.

Elizabeth Kubler Ross, the famous pioneer of studying death and dying, said “It’s only when we truly know and understand that we have a limited time on earth – and that we have no way of knowing when our time is up, we will then begin to live each day to the fullest, as if it was the only one we had”.¹

I think I have reached that point.

In his book, Personhood and Presence², Scottish hospital chaplain, Ewan Kelly, describes an exercise he uses to help health professionals consider their mortality. He reads Roger McGough’s poem, A Youngman’s Death³, then asks participants to consider what for them would be a good death: “In order to facilitate a discussion about fears around death and dying, I then ask them what death they would not like and why”. Ewan concludes, “An awareness of our life being a gift of a limited time-scale rather than a right to ongoing health and longevity may enable us to embrace life more fully in the present and all that each moment may offer us.”

At present, the Western Australian parliament has a joint committee to consider end-of-life issues. Last week I appeared before the committee. The nature and purpose of suffering was of great interest to the committee. In a secular, materialistic culture people struggle to find meaning in suffering.

Disability, illness, divorce, imprisonment, employment and grief are all experiences of loss. They can all produce suffering. But, as concentration camp survivor, Jewish neurologist/psychiatrist Viktor Frankl says, “In all of these terrible circumstances, we still have a choice about the way we respond. We may respond with anger, bitterness and revenge, or with acceptance and forgiveness” (paraphrased⁴).

Reflecting on decades in Siberian prison camps, the Russian Nobel Prize winner Alexander Solzhenitsyn says, “Prison causes the profound rebirth of a human being… Your soul, which formerly was dry, now ripens from suffering… And that is why I turn back to the years of my imprisonment and say, sometimes to the astonishment of those about me: “Bless you, prison!…”⁵

My Parkinson’s disease will undoubtedly progress. Every year I will experience more loss, and will retain the freedom to choose my response. I am learning to follow Solzhenitsyn’s example, and say, “Bless you Parkinson’s Disease.” Or, in the metaphor of Leunig’s delightful cartoon, I can choose to relabel my ‘disabled’ badge to ‘enabled’.

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