A Blog About Why I Can’t Seem to Blog

Ironic as the title may be, I have been pondering, even wrestling with and obsessing over this very question for months now. If I had spent a fraction of the time writing as I spent in the emotional/mental ‘doldrums’ thinking about writing...well, you know what I mean.

Having completed my contract at the University, I have more discretionary time than ever before. In response to the question, “What’s next?” I had shared with many that I enjoyed writing blog posts and would be rejuvenating my “Positively Parkinsons” soon. But, despite my best intentions, this has not materialized. So, why the seeming immobilized state?

Time to be brutally honest. Here are the causes/sources that I have considered for my apparent writer’s block.

Maybe this battle of the blog is simply a manifestation of the ever-evolving grip of my Parkinson’s. Like the “frozen gait” that stops some of my PD pals in their tracks; the mind says move but the legs don’t get the message. Or it could be like the stiffness I experience when I forget to take my meds on time.

Moving on to some of the non-motor symptoms of PD, perhaps it is fatigue that plagues my sleep-deprived body of energy, leaving me spent at the end of most days with no energy to be creative.

Or, maybe it is the lurking devil of depression, which can lead to dreary and dark thoughts of hopelessness and a “why bother” response to the challenge of creating and refining a worthwhile blog post.

I have been experiencing a crisis of confidence (not sure if it is a cause or an affect). Is my writing worth publishing or posting? Am I any good at it? Is this writing thing a thinly veiled attempt to attract attention, compliments or, heaven forbid, pity? Is it worth the effort/time? Does it really encourage people (whether with PD or not)? Am I just procrastinating, being lazy or undisciplined?  Maybe it’s just time to move on.

All these potential sources, unanswered questions, and more could be at play in my “writer’s block”. So what do I do?  This is the question I leave with you.  What is your advice?

From Graduates to Grandparents

It has been a very long time; 40 years. And yet four decades seems to have sped by in an instant. Memories had somehow been compressed and stored in the archive function of my brain. Recall was the problem.  Without the name-tags, facial recognition left me stammering, trying to identify the elderly person holding out his or her hand in greeting. Once identified, by furtive glances at name-tags, my classmates and I launched into storytelling and exchanges of status reports.  As I moved about the room from small group to small group, each person took awkward small sips from their wine glasses.  The 40^th reunion scene reminded me of hummingbirds hovering momentarily, probing newly-opened blossoms and then moving on

Careers had come and gone in the past four decades. “Retired” had been added to the biography of many. A whole generation has grown up, and in the process made many of us grandparents. The graduates of 1979 UBC Law School were as diverse bunch, at least in terms of personality and background. The career paths of those in attendance stretched across the gamut from well-heeled executives, who had never practiced law, to retired judges. There were politicians of every stripe and practitioners of every calling. A curious and incongruent crowd of older folk, so disparate in their views and appearance that an observant stranger would not have easily identified what they all had in common.

Admittedly, I attended this event with some trepidation. The legal profession rewards confident men and women who show no sign of weakness or vulnerability. It was no secret that I had Parkinson’s disease.  There was no effective disguising its symptoms. But, scanning the list of those of our class who had passed on, I realized it was a privilege just to be in attendance.

Why do we hold reunions? Sure, there are those who are simply curious and attend in order to extract the latest news, the juicy bits, just to be “in the know”.

Perhaps to others, the reunion was a sort of  a tontine, or death pool, where the last person alive “wins” and we attended to record the fact that we were still contending for the prize.

But I think there is something more benevolent in play.  Those years in law school were formative.  Not just because of the legal principles we learned together, but there was a recognition, if somewhat ill-defined, that our relationships with one another were important. Despite how different from each other, we survived the crucible of those 3 years together. Despite the competition, there was a genuine interest in each other, and even a recognition of the need for mutual encouragement.

Life, like law school, and Parkinson’s, is best lived by taking the risk of sharing the experience with others.  Otherwise, the challenges can easily drive us to retreat, giving into the fear of rejection and misunderstanding.

Driving home from last night’s reunion I thought of those of my classmates who did not join us, and I wondered why they had stayed away. Could it be they did not want to be judged or compared to others?  It may take some courage, but whether it is attending a reunion of old classmates or getting together with others who struggle with PD, the benefits of taking the risk far outweigh the certainty of loneliness.   

In Praise of Weakness

On the fourth of a series of four double axels, Kurt Browning, the superstar figure skater, fell to the ice, spoiling his otherwise perfect display of athletic artistry. The crowd in the arena drew a collective breath as he bounced back onto his feet, regained his composure and skated through the remainder of his routine. But his smile was not quite as carefree as it had been earlier in the evening's show.

He was not the only one to fall in the filmed-for-television premiere of "Holiday Festival on Ice". Other stars, like double Olympic gold medalist, Katia Gordeeva, missed a jump as well. Seeing any performer stumble evokes a reaction. But when world and Olympic champion skaters fall the scene leaves you feeling anxious and tender toward them. Your heart goes out to them. "I know how you must feel" you whisper to yourself. All that skill, hours of practice, fighting through hardships and challenges, only to fall when it counts, in the final analysis, the grande finale. “Disappointed” is not a sufficient descriptor. Shaken, self-doubting, crushed or even devastated, may be better. We have all been there.

The humanity of each star who had a flawed performance became even more evident when the audience was invited to stay for the retakes that were deemed necessary for taping of the television show. Kurt managed to pull off the same three spinning jumps but noticeably injured a muscle on the fourth jump, causing the 43 year old Canadian ice star to limp off, shaking his head, frustrated with what his body told him. There was no disdain for the failures the skaters experienced. No faultfinding or blaming. Instead, it was a perfect display of how to handle our human frailty, our weakness.

"Weakness" is not an attractive word. But there can be depth in the damaged soul, breadth in the battered body, and toughness in the tested and troubled mind. Did you ever notice that we are all drawn to share our struggles, our failures and weaknesses, with those who share theirs? It seems as if we are not really attracted to the famous, the flawless and the faultless when we feel bothered, burdened, or buried.

No one aspires to fail or evidence weakness, but to deny its existence is to allow it to breed no benefits. Even though we avoid our own vulnerability, we see the value of openness in others. We often feel most human and alive when life squeezes us longer or harder than we would like. In that sense, “No pain, no gain”. After all, name one person who has impacted the world for good that has not been brought low and tasted the bitterness of pain, sadness or loss. Greatness has little use for the spoiled and self-satisfied among us. They are pretenders, posers, too 'perfect' to lead us up out of hurt and rejection. It seems we cannot rise up unless we are first bought down. Indeed, our true heroes are chosen from the humble and homely.  They are deeply admired and loved because they show us real beauty and how the basest "beast" can become the best and most "beautiful" of our race. Take last year's mega-hit "Slumdog Millionaire", or almost any classic story.

Parkinson's disease too can mold men and women into models of human perseverance. Sharing our weakness can draw others out, allowing them to be vulnerable; who they really are. Author, Dr. James Houston once said, “True friendship is based on the mutual sharing of weakness”.

Weakness compels us to realize our need for others, allows us to be cared for; be loved. No one in a suit of armor touches real life. It is the bruised and battered that that draw us like a vacuum and can give us courage to man the battlements of our own often beleaguered lives.

Out of the crucible comes wisdom. Raw intelligence can often be just a braggart or a thief masquerading as the stuff of life. But it is a beggar who finds bread who is driven to share the source with other hungry hearts; while the proud and powerful disdain the weaknesses.

Parkinson’s or flawed performances, we can all benefit by sharing our human weaknesses, using them to learn how to live with and stay fighting those we cannot yet conquer.

Unshaken Friendship

Time tests all friendships.

Sitting around the kitchen table sharing a bowl of tortilla soup, corn bread and a glass or two of sangria was the picture of comfort food with comfortable conversation. Crisp with the feeling of fall outside, the warmth of old friends wrapped us in easy memories. It was an old, soft blanket we shared together. At times the blanket held sadness and heartbreak huddled silently in its folds, at other times a reassuring hug had been held beyond simple politeness, and was tangled in its tranquility. Many occasions of raucous laughter meant uncontrolled tears spilled to be absorbed by its memory-filled fabric. Friendship like this cannot be adequately described, it is cherished with eyes closed and hearts filled with its sounds and smells, warmth and easy rhythm.

Bill and Shirley (not their real names) have been a part of our lives for more than thirty years. No, it has not been continuous congenial contact, for on occasion there were years between some visits. But getting together was like bringing out that warm wrap and knowing that the sweet ‘hot chocolate’ aroma of mutual acceptance and caring would soon fill the room. Last night we went onto the back deck and howled at the full moon together, confirming to our neighbours that we were indeed a little crazy. We shared some hurts, some achievements, some concerns and some celebrations. But most of all we simply shared ourselves, and it left me with a satisfied “Ahhhhhhhh.”

When a life changing diagnosis, like Parkinson’s, befalls you in life, you get a number of responses from friends and family. There are those who simply ignore it, something like the denial I utilized when first diagnosed. “I don’t know how to deal with this and so I will just pretend it does not exist. Maybe it will go away.” Who has not felt the discomfort and inadequacy in responding to a “wounded” friend?

Some choose to safely intellectualize the subject. “Well, I knew a person with PD and they said… Aren’t there medications to deal with that?” This effectively dehumanizes the experience and simply segregates it as a topic of scientific conversation.

Of course the opposite of that is the emotional response. “”No! Not you! You don’t deserve such a devastating disease. How are you coping?” Well, I was feeling fine before you asked. Thanks!

But in my opinion the best response is an honest acknowledgement of the diagnosis and the affirming acceptance of the person with the problem. Those people care and are sincerely concerned, but we move on with a common commitment to making the very best of it. Despite feeling entirely unprepared, we have the years of growing friendship to sustain and encourage us.

For me the preferred reaction to my PD challenge is neither dramatic or dispassionate, disinterested or detailed. Seek understanding, yes, but remember that the most important ingredient in the mix is the person not the disease. Our closest friends know that.

One recurring theme: Difficult though it may be, in order for others to be comfortable with us, we must be comfortable with ourselves. We can avoid the drama and denial with caring friends.

The Lone Ranger Did Not Have Parkinson's

Vietnamese food is one of my favourites. I am especially fond of coconut curry chicken. But a mutual love of the cuisine was not the reason "Big Jerry" (he prefers that over Big Mike) and I were meeting. We are both lawyers with Parkinson's disease. In fact, we found ourselves laughing about how much we had in common. He was diagnosed younger (he is more than 10 years my junior), and after I was told I was positively Parkinson's. We don't have the same types of law practices. But we journey along together on this challenging obstacle course called life with PD. Somehow sharing the fears and the funny stuff makes the whole thing a little more manageable. Even our wives benefit from this friendship as the four of us get together for a nice meal every few months.

For some the bigger support group serves the purpose. For me, at least at this point in time, a few friends of the PD persuasion, like Jerry and Patrick, are a great comfort.

Of course there can be discomforting risks of meeting with other PD people. I remember my first encounter with a fellow PD person. The first thing she said as she struggled into the coffee shop, sat down and focused on my face was, "Oh, I see you can still smile.". She then launched into a litany of symptoms that she prophesied would soon befall me. It was like being pelted by punches, and I inwardly groaned at the images of me in some future state of pathetic incapacity.

Life with PD can be a lonely affair. Sometimes we feel anything but socially acceptable. People may avoid us like we are carriers of the H1N1 flu pandemic. But for me it is critical to silence those inner antisocial hecklers, like Waldorf and Statler, the Muppet characters spewing negative comments from the balcony.
To listen to them is to let the PD win, defining you as not acceptable in social environments. To be accepted by others we must first accept ourselves. And learning this with the encouragement of PD friends has been enormously encouraging to me.

The Lone Ranger did not have PD. But even so, he had Tonto to stand by him and encourage him. He wasn't the "Lone" Ranger at all.