Now and again

Dogs are always popular, and they are great at living in the present. Plus I have lots of dog photos and don’t have to worry about copyright.

Tomorrow I go in for my second ‘DBS tuning’ and I am hopeful that I will see further improvement in some of my most troublesome Parkinson’s symptoms. But DBS is not a cure. It has reset the clock somewhat - in many ways I feel better than I have in many years. But that will not last forever. As Kate 2.0 continues to emerge, powered in part by the deep brain stimulation (DBS) device in my head, it’s time to take another stab at that recurring question - what, and who, do I want to be when I grow up, and how do I cohabitate with this degenerative brain disease for which there is no cure.

By not believing that I can be cure, hhave I doomed myself to failure? Embraced limitations that are not there? Perhaps, but since no one has been cured of Parkinson’s, and it is clear to me that science really does not understand much about the brain, I carry on with the notion that I won’t be cured and with the awareness that things will degenerate over time.

So, if we admit to these constraints, what do I want to accomplish with the time that remains? What helps me is to differentiate between behavioral,  performance, and outcome goals.

Behavior goals are straightforward - what are the actions we need to take on a daily basis. For example, behavior goals include developing good sleep hygiene, proactively managing stress, eating lots and lots of veggies, and getting regular exercise. These activities sound simple, but of course, enacting any sort of behavior on a consistent basis over the long term is hard. Especially when good sleep hygiene does not always lead to a great night’s sleep, eating vegetables doesn’t prevent or cure any illness, much less Parkinson’s, and regular exercise sometimes just leaves me tired and sore. But I always come back to the fact that there is data that at least correlates doing these things with better health, greater happiness, and a potential slowing of symptoms progression.

Performance goals are interesting, as they follow from right living (aka, behavior goals). For the young and healthy, there is often a direct line between behavior and performance - good sleep hygiene leads to good sleep. However, aging in combination with a complex syndrome like Parkinsons’s means that daily behaviors don’t necessarily lead better performance. At the end of the day, when the stiffness sets in, it feels like all the yoga in the world will not make a difference. And in fact, over time, I may lose mobility despite consistent work on my part. And so I circle back to the behavior goals - today is the only reality so we must do what we can and let go of the rest.

I don’t set outcome goals at all. The idea that we control what will happen is illusion at best. If I decide that I am in fact a human of unlimited potential and that I want to win the Olympic gold in gymnastics - at a minimum that’s going to lead to wasting a ton of energy and time. At worst it will leave me injured or paralyzed or dead. And so I do not declare that I’m going ‘beat Parkinson’s’, nor do I ‘fight’ it. It is what it is, and I’m stuck with it for the rest of my life. My choice is in how I work with it, how I experience it on a daily basis. The trick is to embrace my behavioral goals without expecting any particular outcome. Statistically, key actions improve the odds of maintaining health, but at the individual level, well,  there will always be chronic smokers who live to 100, while their clean living counterparts die of aneurisms while out running.

So we come back to staying in the reality of the present, building meaning from the small things, the repetition of actions, of days, months, and years. If, as Aristotle would have us believe, excellence is derived from our habits, then meaning is derived from an appreciation of the present moment, consistently and constantly. The trick is to not grasp too tightly at outcomes, while continuing to create the future that we want. We must hold lightly to the preciousness that is the now, accepting that if we are lucky, we will be gifted with a tomorrow that brings us a measure of joy.

“If you remain generous,

Time will come good;

And you will find your feet

Again on fresh pastures of promise,

Where the air will be kind

And blushed with beginning.”

― John O'Donohue, To Bless the Space Between Us: A Book of Blessings”

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By Grabthar’s Hammer, My Head is Lumpy