Parkinson’s and the Art of Getting Better

I met an old friend the other day who, after a somewhat awkward handshake, asked me the typical, polite throwaway question, "how are you?" Feeling in a particularly self-disclosing mood, and assessing the risk as minimal, I divulged my PD diagnosis, to which he responded, "I would not have noticed. Is it progressing?". With no more than a tinge of sadness, I admit, "As is inevitable, it is getting worse."

Every day, often without realizing it, I conduct a self-assessment. Is my tremor worse? Am I stiffer than I was last week? Are there any telltale signs of new symptoms, such as problems with balance, shuffling gait or (shudder) cognitive dysfunction? Inevitably, at the end of each inquiry, I become resigned to the conclusion, "I am getting worse!" Slowly, like the flow of lava creeping toward a waiting village, Parkinson’s will increasingly have its destructive way. That is just the way it is. Fact. So what do I say to myself in response to this less than thrilling prospect? Get over it? Just give up. Ignore it? Get used to it? Fight back!

From time to time I admit using all of the above self-talk phrases, plus a few too personal to list here. Such is my human experience. But what makes my impending PD peril so different than that of every other human being? After all, who after the age of about 50 doesn’t to some extent have to admit, “I am getting worse.” Maybe not in pervasive ways like those who deal with diseases leading to premature death or disability. But in small ways, perhaps from our teen or early 20 something years, we are somewhat in a state of decline. Who of us after 50 find it easy to: Stay fighting trim? Avoid telltale wrinkles? Summon up more energy? Have broader and more inquisitive thoughts? No, not most of us as we are all living with the metaphorical white sand filling up the bottom of the hourglass. That is just the way it is. Fact. And your response to that is…?

So whether you have PD, MS, ALS or some other acronym-labeled disease, or simply recognize life for what it is, we are all in similar boats, headed downstream at an ever-increasing speed, or so it seems. The question remains, how do you grapple with this fact?

So when I am asked by some unsuspecting friend, acquaintance or stranger, “How are you?”, I automatically think of the day’s self-assessment, and am prone to answer, in effect, "I am getting worse". Few would disagree with that analysis, often eliciting a pitying, "I am so sorry". But if that is the only reality that I acknowledge, it is my choice. Perhaps my response is reflective of my belief that I am in fact getting worse. But am I?

I was challenged after that chance interaction with an old friend on the street corner in downtown Vancouver to reevaluate my response to him. Yes, my Parkinson's disease is progressing. It is, in fact, "getting worse". But am I getting worse? I suddenly realized that in answering the way I had I was replacing who I am, the I, with the Parkinson's disease that I have. In other words, I was letting the disease define me.

I am not "getting worse". I am getting better. I am better at relating to and caring about people who are hurting, grieving, suffering loss, feeling overwhelmed, or just plain sad. I am better at being patient with people who are slower at driving, moving, thinking or responding. I am better at remaining silent in recognition that I do not really have anything useful to say. I am better at taking advantage of opportunities that present themselves today, rather than putting them off. I am better at accepting the difficulties of life, recognizing that they can make me stronger, wiser and a better person.

I am committed to getting better.

A Secret

The upscale restaurant was quiet, except for the stealthy murmur of conversations at a few nearby tables, punctuated by a clinking of cutlery from time to time. We four lawyers sat by the window, sometimes peering out into the dark streetscape to watch a late evening commuter or two hurrying for home somewhere nearby. Paradoxically, I felt both tension and comfort at the table, as if two wrestlers were struggling for supremacy. But assessing the scene with the objectivity of a professional observer, I found this conflict almost normal and acceptable.  Except that I knew each one held a secret tightly and awkwardly in some hidden place.

There was Ed, the slightly tense, dark-haired barrister still in his court garb, having arrived earlier than the rest to enjoy a short liquid reprieve from the rigors of a trial that he announced was destined to run a number of weeks yet. He talked easily, as do those of our comrades who frequent the courtroom, somewhat preoccupied with the judicial battles of the day, most of which he had won. But he dared not disclose his secret.

Karen was confident, yet obviously caring and unconventional for a lawyer as she talked about the diversity of her roles within the legal profession. Her world seemed made up of people rather than focused on the technical issues that plague the billable time of most lawyers. Clearly she had the ability to succeed in any number of circles, as she described her relaxed relationships with names that everyone recognized. But she kept her secret safely hidden.

Ken, on the other hand, was casual. Older than the rest of us, he eschewed formality sporting shorts and sandals, regaling us with his counter-culture adventures as a reporter in his pre-law school days. There was a hint of homesickness in his voice as he reminisced about those days of his youth and its lopsided lack of schedule or steady income. He might have come close to betraying his secret, but he held back at the last minute it seemed.

I, however, was unable to contain my secret when the topic of Parkinson's disease unexpectedly leapt into the conversation like a lion's roar that could not be ignored and demanded of me my carefully concealed packet of truth. Ken had commented on a friend with PD and I knew I could protect the secret no more.  There was a barely noticeable catch in the breath of each of my 3 dinner companions, some forks hesitating in mid-air just a second as they each took in the news of my diagnosis. Their consequential questions were polite but understandably naïve because for the most part lawyers thrive in the rarified atmosphere of disease-free living. After 30 years of living out the role of a professional problem solver, advocate, diplomat and wordsmith, the old adage of "never let them see you sweat" was never truer.

It is not that lawyers lack compassion anymore than anyone else. It is just that in their world there is little opportunity to recognize or express vulnerability, or any other "softness". We are "fixers" who must stand firm and fight, staunchly and unemotionally defending our clients and protecting their rights. We cannot sacrifice the confidence of our clients; so no tears or looks of dread or dismay.

But despite how it felt to surrender my secret to my classmates, I knew that they had secrets too.  Ones that could only be unpacked when it was safe to do so, and where that "weakness" would not be despised or derided. Certainly, it was for those of us called to the bar a very rare circumstance that would allow any unveiling of the personally painful or the frightening. In fact, many of our professional friends will likely go to their graves wrapped in, and clinging to, their cloaks of self-confidence.

So my secret had been shared. But in doing so it had lost its power over me.  It was my hope that, opposite to that truly pitiful Gollum, the loss of my prized ring would empower and embolden others. And if not (even Gollum said, "They do not see what lies ahead"), I still do not think it was a mistake. For the truth will out, and better it is to be spoken first by me rather than about me. It has a marginally better chance of sustaining a semblance of reality that way, and I am less likely to be described as nearing my grave or courageously battling some crushing medical monster.

The tremor along my right side was more noticeable as I drove home that night. I wondered whether it was the disease inching along its inevitable path, or a physical manifestation of the regret that sometimes follows having told one's secret.