I have been a lucky man. Life has, thus far, been kind. Those may seem absurd sentences for someone who has had Parkinson’s for 16 years, type II diabetes and even a heart condition thrown in for good measure. A year ago I had neurosurgery to implant electrodes that would control my shaking hands and restless feet. Hardly the medical history of a lucky man you might think.
You would be wrong.
I often feel a fraud. I know many with Parkinson’s, crippled by the vicious tarantella of dyskinesias and the agony of dystonia. I know many whose nights are full of terrors, stalked by demons, prey to wild beasts. Or riding that ragged edge between sleep and dreams toward the gates of delirium. I know diabetics, models of compliance, entering their later years as amputees, their digits, one by one plucked from them by neuropathies, vascular insufficiencies too numerous to mention, and the blackening of sores and gangrene.
Were these afflictions to afflict me, I would doubtless rail against the injustice, the savagery and relentless onslaught of the condition. But instead the Almighty, by whatever pronouns you know him/her, has seen fit to give me more time to reflect.
Before L-dopa, life expectancy with Parkinson’s was six years from diagnosis. That would take me to 2012. I would not have seen my eldest musician daughter graduate from university let alone my younger children. No paediatric intensive care nurse. No skilled paramedic. I would have missed all of it, serving only as food for worms. And even within a life expectancy of six years, they would have been pretty grim. A slow waltz into darkness.
Worst of all, I would have missed the last series of Game of Thrones.
Primo Levi, in “The Drowned and the Saved” touched upon it in the apparently arbitrary murders in the WW2 concentration camps. The suicide rates amongst survivors of the death camps reflected their inability to reconcile their own survival against the extermination of many other similar individuals. This paradox drove many (the author included in all likelihood) to take their own lives, unable to understand their salvation in the context of the greater drowning.
Yet others, better patients than I, can write with authority about the screaming agonies of dystonia, the tarantella dance of dyskinesia and the many invisible symptoms of this sordid syndrome. Not me. I may preach from the same pulpit but my words if not my authority are carried away on the breeze.
I am not alone. I know of others who whether vocally or sotto voce, feel equally uncomfortable. Often in the aftermath of successful DBS, our bodies react to this liberation by making us feel guilty about advocacy. I can (but won’t) name friends who feel equally uncomfortable. So how do you speak to the “drowning” from the comparative security of the lifeboat.
If one of the central pillars of advocacy is the acknowledgement of experience, then we are muted. Yet I would argue that it is that transition from drowned to saved that is, in itself, informative.
So brothers and sisters, perhaps you should be the judge of this. Is my voice no longer relevant or meaningful. Do we press on in the hope of regaining our authority or do we, like Stonewall Jackson recognised the need to collect our thoughts once more and “cross over the river and rest under the shade of the trees”.