I once wrote a post which began “no-one told me that I was terminally ill….”. As events have turned out, a piece that was about generalised fear and its origins proved to be prescient. Last week I was diagnosed with Parkinson’s which, although not strictly a terminal illness is nonetheless progressively debilitating. As my kindly neurologist put it “In itself, Parkinson’s doesn’t kill you but it makes death more likely”. So should we regard it as a terminal illness? Certainly there is no cure nor is there any substantial likelihood of remisssion. However, the progression of the condition is, by all accounts, uncertain at least in terms of timescale. All that appears certain is that the symptoms get progressively more severe for as long as the patient lives. Little by little, one loses functionality of movement, expression and speech and, in this loss, says farewell to much of what makes one human. With ironic luck, dementia may take away self-awarenesss to a sufficient extent that humanity departs un-noticed but, nonetheless, the prospect of a future in which there are few certainties other than an accelerated rate of the natural deterioration of age remains daunting to say the least.
So what to do? How to respond? How to conduct oneself? I would like to think I might face the future with stoicism and dignity but let’s face it, I’m scared shitless. Not of the pain and disability but rather of the helplessness and dependence upon others neither of which come at all naturally. In particular I dread becoming the property of others, doctors, nurses, carers and so forth, giving them access to my private moments and surrendering my volition. Worst of all, being forced to abandon myself to the kindly tyranny and enforced communality of a care home, being unable to ever be properly alone again.
Whatever may be lost, anger remains and that at least gives me energy so there’s every fucking reason for channelling this and for devising the biggest and best dammed bucket list I can imagine, one that will not only fulfil but that will provide sufficient distraction. But guess what? I can’t think of a single really exciting item for the list. Unlike my youngest daughter, I’ve no desire to jump out of an aeroplane or to go diving. I don’t want to run a noble fundraising marathon and, to be truthful, all I can think of is somehow finding the means to apologise to those who I’ve wronged or hurt and asking their forgiveness. This seems a modest enough aspiration until one looks at it’s practical impossibility.
So, once again, what to do? One thing seems certain : that I need somehow to emerge from this transfixing state so that I can use what quality time remains before the hammer comes down. Watch this space!