We Are More

We shuffle past,
Small steps
Accelerate
To keep upright,
Fearful of falling forward.
Then heeding hidden signs
We stop.
Stuck. Stiff.
Stone still
For no apparent reason.
Rigid like
Some street performer statue
Waiting as we tremble,
Hands and head
Refusing to relax,
Some hidden motors
Idling rough
Cause constant shudders.

But we are more
Than famous Michael,
Or Muhammad,
Or others who need not explain
That slow and slurring speech
Is not a mind gone numb,
Or worse,
But simply disobedience
Of rogue thoughts
Not remaining on their path.

And we are more
Than seniors
Struggling to smile,
Or flex a frozen muscle.
We can be young,
Of any race or creed
Who face a failing future
Far too soon,
Who lose our livelihoods
Before our plans are formed,
And fret the needs
Of loved ones
Unfulfilled.

No, we are more
Than those who suffer silently
And covet hope
Of cure
Or surgical invasion
Or some pills to pop to stop
Momentum of this cruel disease
That nags our waking hours
And sabotages sleep
With sadness.

And we are more
Than islands,
Floating far offshore
To leave your continent
Untouched for long.
We ring the bells
Not for ourselves
But you
Who soon may touch a silver strand
Or none,
And face the waning winter days.

As we are leaders
In the march to living well
When days are short.
We challenged few,
With faith
And wisdom born of pain,
Bring back reports
Of struggles with the enemy,
Whose terror tactics
Would spread fear
Were we not brave
And battle-ready,
Sharing all the secrets
We have learned through loss.

Yes, we are more
Than conquerors
With gritted teeth
And storied wounds.
For we have much to give
Our pride-filled world,
To teach of loss
And mourning
With resolve,
And barter breadth
For depth,
Trade selfishness
For sacrifice,
A better goal by far.

We are much more
Than diagnostic labels
Lacking names
And dreams
And futures.
For we are needed
More, much more,
To show the way
On life’s unraveled edges,
All in need of living,
To discover
We are more.

Apathy to Optimism - My Parkinson's Pendulum

Parkinson’s disease can test the toughest and most hardened, playing havoc with your emotions. Over time, the Parkinson's pendulum picks up speed. Sometimes it is like a swing, pushed so hard that it reaches a near horizontal plane at both ends. It is then that I feel insecure, a sense of being out of control. Yes, there is a rush as I speed from one emotional pinnacle to the next, from push to pull and back again. But I wonder each time that I fly by the safety of the ground, who or what is pushing me out of control. Or am I simply pumping my own legs to achieve the heady heights and speed.

Life with PD has been like that lately. One minute there is exhilaration at the challenge, and the next discouragement. I move with ever-increasing velocity from enthusiasm to apathy, optimism to cynicism, ready to take on the future then over-burdened by the present. I know it is related to the PD, whether it be the disease itself, the medications, or the psychological reaction to the uncertain but inevitably compromised future.

And yet there are moments, like now, when the spin cycle slows enough for me to gather my thoughts and remember my commitment to being positive. You see, I realized that it must be a commitment, a decision, for there are those who will beckon me to visit the land of negativity, all the while gripping their own half-empty glasses. They seek to defeat any sunshine that might creep ever so tentatively from behind the cloud that is raining on every parade it can find.

At every step along the path of Parkinson's there are choices I have to make. Will I be brought down by the pending problems, or buoyed up by the challenge to find the silver lining. Will I, by words and attitude, choose to encourage others and myself, or fall into the pit of despair, self-pity and depression? In a phrase, will I be positively Parkinson’s or sadly resigned?

Of course, this vacillation in living goes to the very core of who we are. It forces us, even if we do not face the challenges of a debilitating and degenerative disease such as PD, to ask serious questions we fear because we do not have adequate answers. What or who will we put our faith in? At the risk of "wasting" our time, energy and money, what investments in the future will we make? Despite how we may feel; hurt, alienated, angry, or isolated, how will we live each day such that each person we touch will feel cared for? These are not questions that can be answered once and then never revisited. Curious, but that is the way it is with most important issues. They must form part of the fabric of our lives, demanding of us a response, a commitment, a decision, on a continuing basis.

The emotional swing goes forward then backward. For every action there is a potential reaction. Most of my reactions are ill-considered, emotionally-driven and self-centered. But I have learned that it is often better to feel the sting, take the punch, and study the source so that my responses can be reasoned, tactful, sensitive and caring. It is the way I can slow the swing of the pendulum to a measured pace.

It is my prayer that the start of a new month will be an opportunity to re-commit to the goal of living out my Parkinson's positively rather than succumbing to cynicism. Let me point the way to Hope and in the process replace the panic and pain of the pendulum's swing with peace and purpose.

Monastic Musings on Parkinson's

The meal was eaten in silence. That is, except for the reader. He was perched above us in a small balcony protruding from the wall about 8 feet above the diners. Thirty or so members of the Benedictine community sat silently on simple wooden chairs on the outside of the U-shaped table arrangement, eating and listening to an echoing essay about the Roman Catholic church in Africa. Supper was comprised of bread, salad and a rice dish, with applesauce for dessert. Not being a social gathering, it was over in about 25 minutes. The food was plain, but tasty, and certainly adequate, much like the room in which the meals were eaten. It was 25 feet high at its steeple peak, covered with wood paneling rising from colored concrete floors to windows through which beamed the unusually warm January sunrays. A vibrant, iconoclastic style mural of Christ and his disciples filled one end of the hall, evidencing a reverent and loving dedication of thousands of hours of painstaking attention to detail. I have always been honored and humbled to be eating with these men who have voluntarily surrendered many of what we would call modern life’s benefits. Father Placidus, Father Mark, Brother Luke and Father Abbot John welcome me despite the fact that I am not a Catholic. This is a community that lives St. Benedict's vow of hospitality.

This setting, Westminster Abbey in Mission, British Columbia, has become a place of refuge and peace for me for more than 25 years. I come here to a world that has no rush hour, or rush at all, to step off the treadmill for a day or 2, or more. The guest quarters provide the rudimentary comforts; a room with a bed, a small desk, chair and a lamp, and bathroom, but no more. It is here, in relative silence, beauty and solitude, that I come to think, read, write, plan and pray at least a couple times a year. I have never found a place that is better for these contemplative activities.

It took me a while, and still does each time I come here, to get used to living without the constant barrage of noise, distraction, people and obligations. I recognize that this may not be everyone's idea of a good time. But this is the place where I can unbundle the many applications that I have concurrently running on the hard drive of my life. It is a time of retreat. A time to refresh, reboot or defrag, if you will, for the onslaught of spam, viruses and phishing to which I will return.

Perhaps, most significantly for me, this brief repose gives opportunity to consider the important, instead of just the urgent, matters of living. Since being diagnosed with Parkinson's 4 years ago this month, I find I need and value these times more. Perhaps it is the fatigue or vulnerability caused by the disease. But whatever it is, these times alone at the Abbey provide a much-needed rest stop in the race I run.

I have found that, while the 2 activities may seem similar, there is a significant distinction between isolation and solitude. As people with Parkinson's it is often easier for us to isolate ourselves rather than face questioning looks and the seemingly inevitable embarrassment of social interaction. But solitude is not hiding. Rather, it is meant to prepare us for engagement with life as fully as it can be lived. But without time for contemplation, how can we determine what it means to live fully?

I wonder why we are so often afraid to be alone with ourselves in silence?

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.