To the applause of Canadians everywhere, the Toronto Raptors
won the 2018/19 NBA championship. Did you really care? Do you have some travel
coming up? Are you excited about it? Maybe you have lots of free time in your schedule
for the next couple of weeks. Are you looking forward to enjoying those hours
and days? You may be anticipating meeting an old friend, high school buddy or
long-lost cousin for coffee. Are you enthusiastic about that?
I thought I had experienced most of the symptoms of
Parkinson’s, or at least knew someone that had. However, I was ill-prepared for
one such attribute. It crept up on me
the past few months. It has proven a stealthy and deceptive enemy, masquerading
as a temporary circumstance brought on by any number of life events. It was
something I expected to simply “go away” as my life patterns changed. I found
myself making excuses when it did not, saying things like ”when (fill in the
blank) happens this feeling will disappear”. But it hasn’t. So now is the time
to name the unpredictable and elusive symptom apparently experienced by up to
70% of people with Parkinson’s. APATHY. Having capitalized each letter of the
word I must admit that it was for emphasis rather than because I felt strongly
about it. In fact, everything feels a little (or a lot) emotionally flat.
The shameful reality is that I have fallen victim to this
debilitating state of body/mind. Although I’m not continuously aware of its
presence, it can climb into my skin at will, like some form of alien. It seeks
to commandeer my days, pretending to be the result of fatigue, insomnia,
sadness or even depression. Apathy can sit on my shoulder, whispering in
response to any attempt at motivation, activity or effort, “Why bother? Just
rest for now. Perhaps you’ll feel better in an hour or two. Or maybe tomorrow. It’s not really that important anyway.”
Embarrassed now, I admit to having listened to these prompts and complied, or
rather succumbed, to their indifference.
To be completely honest and transparent, when I am caught in
the grip of apathy almost everything seems veiled in passionless passivity. The
things I used to enjoy don’t seem so important or even attractive.
Procrastination and indecisiveness prove stronger than self-discipline and
logic. Take this blog post for instance. I have been planning on getting this
written for weeks now. But it never seemed to make it to the top of the priority
list. In fact, there isn’t much of a list of priorities.
10 years ago, August 30, 2009, I began Positively Parkinson’s
in order to encourage others facing the day-to-day battles of PD. No candy-coated
aphorisms. No false promises. No venting, rage, or ‘woe is me’ narrative. Just
living out the adventure and giving hope as best I can. The 10th
anniversary of this blog should have been enough to rediscover the spark and
reignite some passion for the cause, given that I had been looking forward to
more time to write posts to share. But apathetic indifference struck a near knockout
blow before I saw it coming.
What exactly is apathy? It is not depression (although it
may lead to that I suppose). But the two have some similarities, as both are
believed to have neurological, psychological and emotional elements. Of course,
the Latin root words provide a fairly clear description of the word: “A”, means without” and “Pathos”, means passion.
That’s easy enough: without passion. And this may be a more pervasive state
than many of us realize.
As
Helen Keller said, “Science may have found a cure for most evils; but it has
found no remedy for the worst of them all - the apathy of human beings”.
My guess is that we all know what it feels like to be
apathetic, especially if we live with Parkinson’s disease. According to some
studies, 70% of us are affected by this silent joy-killer. But what are the
causes? And, perhaps more important, what is the antidote?
My own view is that apathy is not just a shortage of
dopamine, but a quiet, self protective response to the lack of hope. Hope for a
cure. Hope for a slower degeneration of normal functioning. Hope that there is
significance and purpose in it all.
The remedy? Perhaps the best response is a combined strategy
(to deal with the multi-pronged causation).
Make sure your meds are working properly to deal with the neurological
effects of PD as best they can. Second, enlist a support team to provide
structure and process, as well as encouragement and accountability. This could
include a spouse/significant other, family, friends and professionals of all
varieties. This can go some distance to rebut one’s own emotional and
psychological slide into apathetic darkness. And lastly, depending on the
supply of energy and commitment left in your tank, establish very modest goals,
typically one at a time. For instance, my goal was to write this 10th
anniversary blog post before the end of August. There is nothing quite like succeeding
at modest goals to give us the motivation to push ahead. That sense of accomplishment will help build
hope in future achievements.
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