Sunday, May 29, 2011

Michael J. Fox: Canadian or American?

At 5'4", Michael J. Fox could be typecast as suffering from "little man"syndrome. Regardless, in recent years the world, and especially we, the people with Parkinson's, have bid up his stock considerably. Now, despite his height, he is proving himself a giant of a man who has handled affliction, notoriety and some political mudslinging with determination, humor and equanimity. My favorite Michael J. Fox quote is about what PD does to him.

“On a deeper level, it gives you a real humility, because you have to deal every day with the fact that you compromise, to a certain extent - so then you explore what that compromise is and 'how am I compromised?' And for everything I can't do, I find that there's another ability that's been developed or another avenue that I've gone down."

It is hard for us to imagine having to explain Parkinson's disease to friends or strangers today without having the ability to refer to MJF. I would dare say that, for many, Fox is not just the "poster boy for Parkinson's" but holds the hopes of health and even healing for many in his hands.
Last Friday Michael, the "lapsed Canadian", received the highest civil honor in the country as he was appointed an Officer of the Order of Canada. Of course, this garnered some controversy given that some time ago he took on American citizenship (supposedly to the exclusion of his Canadian birthright). I, for one, am proud of the fact that Michael is Canadian (whoever else may have adopted him). He has not really renounced his Canadian country of origin and upbringing, but rather embraced his country of longtime residence. Who could fault him for that? He is, in my books, a true dual citizen who should not be compelled to choose love for one country over another when there is no need nor benefit to do so. One may love both without being a bigamist. Fox was born in Edmonton, Alberta, and grew up in Chilliwack and Burnaby, British Columbia, as well as North Bay, Ontario. "Being Canadian is intrinsic to who I am," Fox said. Let us leave it at that shall we?
So Canada is celebrating Fox for who he is, not a humorous actor so much as a humanitarian activist. Rather than just recognizing his superb acting abilities, the Order of Canada medal is a reflection of his service to humanity everywhere, millions of whom are living with Parkinson's disease and hoping for a cure. The Michael J. Fox Foundation is the largest nonprofit funder of Parkinson's research in the world. In fact, yesterday his Foundation announced a $50 million matching grant, "...made possible by a leadership gift of $50 million from Sergey Brin and Anne Wojcicki". Of course Brin, as cofounder of Google, can afford this generous gift given that he has an estimated personal net worth of 20 billion bucks, but the fact is, he gave $50 million of it to Michael and no one else.

There have been some suggestions that Fox and his Foundation fund only American-based research. This may be generally true, I am not sure, but can anybody blame him for spending the money in the country where he raised it? There are criticisms that he has gone too fast, been reckless and made mistakes. Better that than going too slow if we are to find the keys that unlock the mystery of PD. Some say that MJF is simply grandstanding, using his disease for his own personal purposes and profile. But in all of this, surely it is the goal and not who gets the glory that matters. And in that context there is no evidence to suggest that Michael J. Fox is designing his own "get well soon" project. Certainly, his interest and motivation for the work of the Foundation is grounded in his personal experience. However, recently he was quoted as saying, “I think self-interest is a great starting point, but I don’t want it to cloud my thinking, and I don’t want the foundation to ever do anything with me in mind. This is a responsibility we have now. I want people with Parkinson’s to wake up knowing that there is someone trying to get this done. We want to be accountable to ourselves. I have this image of bursting a door open and watching people go through it. And then, at some point, putting my own coat on and walking through the door.”
Seriously, Michael J. Fox may simply be a Hollywood personality with Parkinson's, but he has proven what one vertically challenged man can do. He and his Foundation have kidnapped a lazy and lethargic area of research and energized it with urgency. He is deserving of an award. I am glad it is as a Canadian.

Thursday, May 26, 2011

Retreat! Retreat!

There is such a thing as strategic retreat. Military history is filled with battles where retreat, planned strategically rather than simply fearful fleeing, became the pathway to victory. Such is true in life generally, as it is in the battle with Parkinson's disease.

The vintage watercraft, "Lazee Gal", rested at anchor in Bedwell Bay as she had many times before. The water, rhythmically patting the hull, scarcely rocked the guest stateroom starboard lower berth where I awaited the imminent arrival of sleep. It was a soothing and blissful moment away from the busyness and breakneck speed of life; a retreat, an oasis of silence.

It took only an hour at 10 knots for the 62-foot Grenfell-designed boat to bring three of us to this bay. It was more of a narrow inlet than a bay, bounded by steep slopes that made for deep water, the bottom lying more than 50 feet below us. Protected, out of the currents, winds and waves, it was a perfect retreat location for we three long-time friends.

Each time I have spent time aboard this teak-decked beauty I am reminded that she and I are similar in age, she being commissioned in 1953, while I entered the world in 1952. I felt a sort of pride for her, she having weathered her story-filled years so valiantly as she continued to serve others well. I wondered whether I could honestly say the same. She had survived striking a deadhead log or two (once under my careless control of the helm) and remained fully functional, if a little shaky for a short while after. I, on the other hand, run the risk of physically shuddering to the point of being taken out of service. We both tend to need a little more maintenance these days, perform better under gentler seas, and can break down at the most inopportune moments. Yet we both seemed to continue to perform our appointed tasks with determination.

Several times a year, as busy calendars permit, my two committed friends and I escape our meetings and obligations for a day or two. It is not, as you might expect, a male bonding time filled with activities, but rather extended time loaded with dialogue, presenting each of us with the opportunity to take stock of our lives, share the lessons learned, recount our current challenges and disclose those dreams we dare whisper not too loudly. It is time to be accountable, to be encouraged and to experience honesty in the reflection of two “mirrors” that can be trusted.

For me, an acute sense of vulnerability accompanies the day-to-day demands of a degenerative disease that cries out for safe harbor. While the comfort and constancy found with my lifelong companion and wife is certainly the refuge of greatest value, yet it is buttressed, made stronger, by the availability of committed friends who seek to listen and understand. They have permission to prod and pry in order to unmask my fears and failures, but they do so for no other purpose than my own best interests.

After 20 years of experience I am convinced that there is a necessity for retreat, reflection, and recharging the batteries. Whether in luxury or simplicity, it is strategic time to ponder and to plan. For life is a long-distance race, an exhausting battle, and rest, renewal and refreshment are needed if we are to engage the evermore demanding demons that would defeat us.

Saturday, May 21, 2011

The Wisdom of a Wounded Healer

The young skateboarder with the torn jeans and dirty, wrinkled T-shirt, slouched in his chair. He looked terribly alone as his head leaned back against the wall, staring blankly at nothing, his eyes angry and ready with tears. The small cubicle in the busy emergency room had no space for a bed, just two chairs, the other one occupied occasionally, but briefly and uncomfortably, by one of his friends. One at a time they would seem to begrudgingly leave the small group of young men who had gathered in the waiting room, laughing and playing cards, bored and apprehensive, unaccustomed to the antiseptic smell of the hospital.
It was not immediately obvious whether the disheveled young man sitting opposite my daughter and me was injured or ill, but as I watched him I noticed his right shoulder sloped lower than his left, and he carefully cradled his right arm with his left hand as if holding it in place. "Compound fracture of my collarbone. I broke it in 3 places" he said in answer to my questioning. Tenderly letting his right hand rest in his lap he pulled back the neckband of his logo-laden T-shirt, exposing a jagged piece of his collarbone jutting through the skin of his shoulder. Despite the Tylenol 3 he had taken, he was still clearly in pain. However, there was more hurting than his broken bones and bruises.
He winced as he described the accident that started with attempting a stunt at excessive speed and led to being catapulted off of his long board onto the concrete, landing him in emergency. Then he told me why he was really hurting. "What really sucks is that my wife could not bother to come to the hospital." It was obvious that the physical pain was being eclipsed by the heartache he felt, alone with only his haphazard friends to comfort him. "She would rather stay at the party then come to be with me." The rest of the story came gushing out like water as if a high-pressure tap had been turned on. He was 21 years old, and had married his 18-year-old sweetheart when he was 19. With a twisted grin, physically mimicking the simultaneous pain and irony of it, he said, "till death do us part I vowed... I meant that!"
In just a few minutes, after having asked a couple of innocent questions, the young man's heart was beating out loud for all who might care to hear. Despite the bravado, the physical environment of the hospital, even the injuries that brought him there, conspired to lay bare his soul. I felt his pain. I was humbled by it. Yet I was reassured by his willingness to openly share this hurt with a stranger who had little in common with him.
I have noticed that there are two basic responses I have to pain or loss of any kind, including my diagnosis of Parkinson's disease. The first and more prevalent reaction is that of stoicism, a type of denial that tries to convince everyone, "It is not that bad. The last thing I want is for you to feel sorry for me." What I expect really comes through is, "I am uncomfortable with being portrayed as weak, afraid of being in need, demanding my independence." This has the initially desired effect of keeping people at bay, ensuring that uncertainty and lack of confidence, that soft underbelly of humanity, are not exposed. We try to fool people with heroics, hoping that they do not see the fear in our eyes. But, of course, the consequence of this "mental toughness" is to convince others that I do not need them; it is an obvious lie.
The alternative response is when I react to pain or peril, illness or injury, by crying out in a mixture of anger and shame. Like the Simon and Garfunkel 1968 hit, “The Boxer”:
In the clearing stands a boxer and a fighter by his trade
And he carries the reminder
Of every glove that laid him down or cut him
‘Til he cried out in his anger and his shame
I am leaving, I am leaving, but the fighter still remains.

We are, after all, vulnerable and human, sometimes bruised or bleeding. To think, talk or act inconsistent with that reality is to mislead others, and ourselves, pretending to be what we are not. We are all in need of love, and at least some expression of it, especially when we are most vulnerable. To deny that need is to deny our humanity. But perhaps even more importantly, our façade of fearlessness rejects or holds at arms’-length those who wish to care and express their concern. And in the process we remain self-imprisoned by our secret pain.

In a sense, we are all in the hospital emergency room, at least from time to time, with our own hurts and heartaches, waiting to be discovered or known despite our proud resistance. Waiting for those who would stay with us, and pray with us, and share our pain and sorrow. And in that way we all may learn the wisdom to be wounded healers.

Saturday, May 14, 2011

Inhospitable Hospital

It was 1030 PM on Tuesday. The rain seemed to have driven the sick, the suffering and the simpering into the packed hospital emergency waiting room. My daughter, grimacing due to inflamed and infected tonsils, had been there since mid-afternoon. I had just arrived for the late shift, waiting, not so patiently, to see a doctor.

The waiting "priority system", although impossible to discern in the melee of comings and goings, was explained to me by the harassed intake clerk. Behind the heavy safety glass partition she vacillated between being halfheartedly sympathetic and stressed out. She had reacted with exasperation to my "how long will we have to wait" query, as if I had asked her a dozen times. "We cannot say. We take the serious cases first and others in order of arrival." This answer struck me as the slogan for our medical plan’s "priority system" for every illness and injury. The problem is that the definition of "serious cases" can fluctuate for any number of reasons. It did not escape me that rarely does Parkinson's disease hit that list so it tends to languish in the "incurable" waiting room.

Moments after hearing the receptionist's wait warning, a tired-looking nurse barked my daughter's name into the suddenly silent room. We were ushered past the electric-lock security door labeled "Emergency Personnel Only - Do Not Enter". Leaving behind the waiting room collage of broken bones, crying children and anxious family members, I felt guilty. I wondered whether my daughter's situation was now deemed serious enough or whether she had waited long enough to earn entry into the inner sanctum. Regardless, we were "in".

It was a deceptive feeling of success. We were shown to one of more than a dozen of those bed cubicles separated from beds on either side by sheets hanging from overhead tracks. We waited, as if holding a lottery ticket, not knowing whether we would get medical attention in minutes or hours. There was one doctor clad in hiking boots who walked hurriedly from patient to patient, grabbing clipboards, reading and uttering to nurses in unintelligible medical terms on the fly. Again, my thoughts segued to patients with Parkinson's, who were so often left holding onto hope of getting answers from overworked doctors.

As opposed to PD, my daughter got the needed medical help after another hour of waiting, and the intravenous antibiotic began its magic healing as it dripped from its elevated bag into her arm. If only PD were that easy to heal, rather than requiring the endless string of pills just to keep limbs from seizing or shaking out of their sockets.

As we waited that night amid the anguish of those in desperation, those in need of emergency care, I realized there would be waiting ahead for me. There seems to be an abundance of patience required for millions who wait for healing before the demanding nature of Parkinson’s disease has its way. But I will continue to believe that there is hope. It may not come through an IV needle, transplanted stem cells or the electronic stimulation of depleted dopamine production. Still, there is hope even now.

Sunday, May 8, 2011

How a Mother's Heart Hurts

Laura and June
Laura, although I never called her that, was not yet 65 when she died. It was cancer that took her in 1979, before she enjoyed much of the leisure her life of labour had earned. She had lived a hard life at times. I sometimes saw the painful memories in her eyes when the rest of us were playing Crokinole and she stood alone washing dishes while staring out the kitchen window into the darkening country sky. But whatever those buried sorrows were, never did she lose the honest warmth in her smiles and hugs, both so freely given. She died too young. Like many mothers of her era she had selflessly given her life to her husband, her three children and her 10 grandchildren, of which I was blessed to be one.

Olga had lived an even harsher life than Laura. At times it was overflowing with hardship and deprivations. No time for her to learn to read or write, yet her intelligence was unmistakably poured into her children, all of whom knew the meaning of hard work; many of the younger ones excelling at school. She gave birth to 16 or 17 children, by some counts, but she also suffered the crushing losses of babies at birth, a toddler by fire and a teen at the hands of a drunk driver. Sometimes there was a faraway, stony look in her eyes while she muttered to herself in German as she rhythmically pumped the pedal of her spinning wheel, making wool yarn while I, her eldest nearby grandson, played nearby on the patched linoleum floor in the farmhouse kitchen. She lived a long life, into her 90s, perhaps too long, for her final years seemed spent longing to go to her place of certain rest and reward.

June, who never seemed to mind that her first and last name rhymed as a result of her marriage, benefitted from the hard work of her mother, Laura, and the daycare provided by her mother-in-law, Olga. But she did not escape suffering completely. Parkinson’s disease became the thief that stole my father’s “golden years”, and hers along with his. And it was the diagnosis of the same villain that brought her tears and a sense of helplessness and sympathetic pain that mothers often feel for their adult children. Yet even this cruel offence does not crush her courage and faith to drink of life as best she can.

I am the beneficiary of a rich inheritance, made possible through the pain and losses of three “mothers”.

From my perspective motherhood is, perhaps, the best and most endearing human example of love that most of us will ever experience. Once a woman becomes a mother she can never not be one. It is like a permanent tattoo emblazoned not only across her body by the strain of childbirth, but also her heart and soul. Most mothers willingly, day-by-day, give up their lives for their children. They would do anything to take their pain or suffering, or shield them from its harshness. Therefore, if as the book of John [paraphrased] says, "greater love hath no woman than one who would give up her life for another”, then certainly a mother’s love is among the greatest.
While we live in a generation that often seems to have forgotten the essential nature of motherhood, and the fundamental need of a mother’s love, Mother's Day still stirs the hearts of even those who have long since lost the physical presence of their mother. For good, or otherwise, the impact that a mother has on her children is indelible. Today, it is for each son and daughter to praise their mother “and call her blessed” as that great Proverb says. None were perfect. But with few exceptions, they did their best with what they had.
I know that I owe my “mothers” a debt I can only pay by passing on the best of what they gave me to those I can.

Wednesday, May 4, 2011

The Honeymoon is Over?

Tall, tanned and with a voice to match his authority, the highway patrolman was professional, polite and proficient as he presented the ticket he had written up through the open window. For some unknown reason there was no indication as to the amount of the fine noted on the pink copy, leaving us fearful of the worst. What I did know is that we had been pulled over for blowing through a stop sign at 50 miles an hour. Frustrated, discouraged and anxious, for reasons not immediately obvious, this seemed both ironic and significant.
37 years ago today, it was a very young and naïve couple who exchanged vows, convinced that statistics would not make their commitment a casualty. We lacked the maturity, life experience and wisdom to make that bold assumption, but it proved to be correct. Despite many struggles and stresses, the welding of our two lives withstood the struggles and strains and remained unbroken, becoming even stronger over the years. When trials threatened to slam the brakes on the relationship, we hung on and kept going. Any temptations to stop, give in, or quit were brushed aside. The honeymoon may be over but the love has stayed firmly anchored.

Even when the diagnosis of my Parkinson's disease was flung into my face like a bold four-letter word stamped in white on a red octagon sign, there seemed no reason to obey its demand. Life did not lurch to a stop. Rather, my wife and I committed to live to the fullest each moment of relative freedom we had. We remain, like escaped jailbirds, Bonnie and Clyde, who know that we will likely be caught in the ugly snare of increasing debilitation, the shaking and stiffness that squeezes me tighter in its grip each passing year. We refuse to be "victims of this unattractive disease", as stated in The Washington Post column, “Having Parkinson’s Disease is Nothing to Celebrate” by Phyllis Richman, person with Parkinson's and former food critic for that newspaper.
Yes, there are times when, because of this "unattractive disease", I feel lonely, even with my wife by my side. I know that sometimes I opt for the "cozy", preferring the use of words such as "challenged" rather than "suffering". But what is the alternative?
I may be guilty of disobeying stop signs, ignoring "realism" and its statistics and disregarding my imminent arrest and imprisonment by Parkinson's. This may be self-delusional, spitting foolishly in the face of fate, but I have a faithful lifelong partner with whom I will continue to live life to the fullest.  With the many obvious risks and sometimes daunting challenges of both marriage and life with our concerns, even when the honeymoon is over I will remain committed to my vows to keep going, keep loving and keep doing my best to elude the ultimate stop sign.