Before my deep brain stimulation (DBS) surgery in 2014, despite significantly increased Parkinson’s symptoms, I was overall happy and at peace with life. I also had a deep-seated conviction that DBS would change everything, including my sense of spiritual well-being. Physical happiness trumped spiritual well-being, at least at this early stage, however. It was reassuring to know that DBS offered a relatively good chance of substantially improving my daily life, if only temporarily,
Now, seven years later, it is clear that Parkinson’s has overcome much of the positive influence of DBS, and monthly—if not weekly—disease progression is becoming more evident. The network of DBS brain wires still helps reduce some symptoms, and those symptoms that have returned are not identical to those experienced pre-DBS. Notably, DBS is still effective in mitigating the worst of my painful right-side dystonia.
On the other side of the ledger, my speech is arguably worse than before brain surgery. Unintelligible slurring is becoming more common by mid-morning, a challenging symptom to predict. I had forgotten the mini nightmare of a sound mind trapped in a body that could only produce the appearance of severe degradation. The required increase in my daily intake of Levodopa, which acts as artificial dopamine for a Parkinson’s patient, allows me to move but also causes the wild flailing and uncontrollable, painful writhing of dyskinesia.
Mornings are now the only reliable time for me to drive safely. My activities are limited by early afternoon to reading or watching movies for the most part, usually while fighting to break out of frustrating brain fog. By mid-afternoon, disease-induced fatigue, exacerbated by the morning battles and medication side effects, is overwhelming.
It is here when I am at my physically weakest and unable to think clearly, when anxiety’s gnawing horror rears up in psychological surprise attacks, that my situation borders on the untenable. It is disconcerting not being able to access the comfort of a deep breath. Having accepted the disease’s eventual outcome without reservation, it is the road getting there that can appear impossibly daunting.
Inevitably, when this happens—which is at least once most days—I remind myself to walk outside, to stare at a flower or spider web or the cloud-filled sky, in frightened silence until I can replenish that foundational part of me, the essence of my being, my soul.
A foolishly giddy smile invariably crosses my lips when this happens as I revel in the cosmic joke, an improbable artifact of life’s guileless beauty. Unadorned by the brutal conveyances that surround, I reach a moment of surrender, laugh as my chest finally fills with breath, and marvel at life’s great circle of fortuitous circumstance, grateful for the day.