Tuesday, May 29, 2012

Rwanda: Genocide and the Heritage of Hope

It was the children that touched me most. Their smiling faces were pinned on postcards line upon line around the room. The fact that these young lives were brutally cut short, sometimes by horrific, prolonged, torturous deaths, was inescapable. Yet, it was impossible to imagine what would possess anyone to commit such atrocities to defenseless human beings. Children were forced to watch the torture of their parents, the rape of their mothers, the mutilation of their fathers, the death by machete of their siblings. All this left the seemingly unanswerable question: "Why?"
Our first stop of the day was the Genocide Memorial comprised of a garden surrounding the mass graves of over 250,000 people, and a commemorative building that told the stories of the deaths of hundreds of thousands in a period of time not much longer than our around the world trip would take. It was a sobering and somber time of reflection. It was a soul-searching experience that could not be described by words. It left me searching my own psyche. Could I commit such atrocities under the right circumstances? Could the perpetration of such evil lurk behind the smiles, the handshakes, the pleasantries exchanged by friends and neighbors, even family members? How could a nation ever recover and rebuild after suffering such a bloody national stain?

I must admit that I was anxious to leave the Memorial, as I had never been confronted with such a graphic example of man's inhumanity to man. Our schedule did not allow us to linger, and I went reeling into the remainder of the day carrying the images of callously murdered children in my mind.
The next engagement was with representatives of the Kigali Bar Association (misnamed for historical reasons, as it is actually the Rwanda Bar Association). The meeting provided a helpful overview of Rwanda's extraordinary efforts to deal with its own unprecedented crimes of genocide at a time when the legal profession, judges and the justice system had been decimated. Rwandans are proud people who, despite the still painful scars they bear, insist that they must deal with the injustices. It is as if to say, "You were not here to help stop the slaughter, so how can you help heal our country?" Yes, Rwanda has been the beneficiary of foreign aid dollars. Yes, nonprofit organizations have been, and continue to be, an important part of rebuilding. However, it is the Rwandan people who bear the burden of confronting the horror of their history. It is the Rwandan people who must reconstruct the shattered trust of their fellow citizens. And it is the Rwandan people who must create a new heritage of hope.
While statistics are only one aspect of any story, the executive director of the Bar Association gave me the following information:
-         In 1997 there were 37 advocates (lawyers authorized to represent people in court) left in the country Rwanda. Now there are approximately 767. This works out to one advocate for every 15,000 people in Rwanda (Canada has approximately 1 advocate for every 700 people, and the United States has 1 for every 500 approximately).
-         64% of the advocates are in their first few years of legal practice.
-         There have been as many as 120,000 prison inmates, including genocide criminals and those awaiting trial. This number has been reduced substantially.

Later that afternoon I had the extraordinary privilege of a meeting with the President of the High Court of Rwanda.  He is the equivalent of the Chief Justice of the Court of Appeal for the country. While thrilled to meet him, and thankful for the opportunity, I fully expected the visit to be perfunctory, polite and short. Instead, I was honored with a meaningful time of discussion where real issues were addressed for more than 90 minutes. While he was confident, I did not detect any arrogance. And while he recognized the huge burden and public nature of his responsibilities, he spoke with passion about the resilience of the Rwandan people. While he readily admitted imperfection in the system, significant progress has been made through the use of alternate dispute resolution techniques, community courts focused on reconciliation, and rebuilding of credibility in the country's justice system. He was obviously well read, well informed and well educated, while at the same time maintaining a sense of humor evidencing he did not take himself too seriously. When asked what he wanted most for others to understand about Rwanda and its justice system, he was ready with an answer, generally as follows. The wealthy nations of the world could have stepped in to stop the genocide, stop the injustice and give hope to the hopeless. They did not. The media could have assisted in alerting the world to the plight of helpless Rwandans in 1994. They did not. But now they are quick to judge us. If they must do so, let them do so on the facts, on the evidence. Rwandans have no motivation or desire to harm Rwandans. On the contrary, Rwandans must be given hope, a faith in their future, and an ability to move on.

I had the opportunity of meeting with several other Rwandan lawyers with extraordinary stories of personal tragedy and yet these men and women maintain an unfailing commitment to a bright and hopeful vision for Rwanda. While the lawyers and judges of Rwanda have a series of seemingly impossible hurdles ahead of them, they are working courageously and diligently to contend with these challenges. While not without stumbling from time to time, and despite international criticisms (some deserved and some not), having looked in their eyes and heard the passion in their voices, I believe they will succeed.

If the people of Rwanda can rebuild their lives, restore their faith in a future and reignite hope for their country after the devastation of 1994, then how can we in the West do any less? And to those of us with Parkinson's disease, men and women who have experienced life-changing diagnoses, can we not commit ourselves to battle for a better tomorrow? We can learn much from Rwanda about resilience and the ability to move on from unimaginable pain and loss. For all of us, nothing less than leaving a legacy of hope for those who follow, for the children, is acceptable.

Sunday, May 27, 2012

Positively Parkinson's in the Pulpit

I stood behind the music stand/makeshift pulpit, gripping its tilted top tightly with both hands to minimize the tremor. Was the microphone turned on? I wasn't quite sure, but someone helpfully adjusted it and flipped the switch so that my voice could be heard in the big auditorium. It was then I had a good look around. It finally sunk in: I was speaking to people who, with a few exceptions, I had never met. What could I possibly say that would be meaningful in the context of a church service? While I have gone to church my whole life, the spot behind a pulpit was not a place I had often occupied. Carson, on the other hand, is, among other things, an ordained pastor, familiar with such places. Wellspring Foundation shares its campus with an international church that holds its services in English. Naturally enough, Carson was invited to speak, and suggested I might tell my story as part of his sermon. I agreed, having committed myself before making this round the world trip to speak at anytime and anywhere I was requested to do so, given my goal of encouraging others.

The night before I had attempted to make notes, but this proved problematic. I had no printer, therefore making notes on my computer would not be of much assistance (unless I carried it up to the platform only to spend far too long trying to hit the right keys and inevitably risk losing my place, and my composure). Having no alternative, I resorted to pencil and paper, painstakingly printing my speaking notes in very short form on one page. This was not a narrative, but rather point form notes to remind me of the key issues I wanted to cover. But just the thought of standing in front of a large audience of strangers increased the amperage on my tremor, making my notes look more like wobbly and indecipherable hieroglyphics than clear printing that would have to be referred to at a glance. And, as is often the case with me, additional thoughts came to mind, which were added to the already scribble-covered page.

Although I carried the paper with my notes in my badly shaking hands, I did not read it or refer to it much. Rather, I spoke directly from the heart, more than from memory. I wanted to be sincere, honest and transparent. For the most part, I just told my story, using the analogy of Parkinson's disease as a different language (in the context of Carson's sermon). It went something like this:

"On January 19, 2006, I was given a new language to speak. It was based upon the fact that on that day I had been diagnosed with Parkinson's disease. It was a language that came from having something chronically, incurably, degeneratively and debilitatingly wrong with the way my brain produced dopamine, a disease that would ultimately rob me of much of my body functioning. It was a language resulting from the frustration and pain, embarrassment and even humiliation I would experience. But I determined then that, regardless of the source of this language and its negative vocabulary, it could be transformed and used to encourage, bring perspective, enable understanding and give hope each day. "

As I shared with a woman after the service was over, "Pain is too important to waste". For it is through our pain, our difficulties, our failures and our weaknesses that we can understand the language of others. That is not to encourage self-pity, judge others or deprive others of their dignity. Rather, with gentleness and humility, we can share the burden of living that sometimes must be borne; just as we can celebrate the conquering of challenges. We each have a calling, a contribution to make, and cause to serve. We must handle adversity well, share our struggles with it, learn its language, and use it to hear, understand and encourage everyone you can as a result of it.
 Of course, there were many ways in which I could have improved my presentation, including making sure my notes were typewritten in large font that I could read without having to hold them in my shaky hands. But hearing the responses from others after was very affirming.

While I am no preacher, there is a story I need to tell, and a message I need to share (even if preached from the pulpit): Parkinson's disease, although it may be powerful, will only beat us if we let it. There is hope, not just in a cure, or for better medicines, but for every day. We can choose to encourage others to become and remain Positively Parkinson's.

Saturday, May 26, 2012


It was an innocent mistake, one left turn instead of a right. But, perhaps for the first time on this round the world trip I experienced a distinct sense of vulnerability.
Our host in Rwanda is Wellspring Foundation, an organization started by two fellow Trinity Western University alumni approximately 9 years ago. Wellspring has done a phenomenal job of modeling the best of educational practices in this land where teaching has not always been as respected a profession as it is in other countries. On returning from Butare, and thanks to our host, we settled into the guest apartment located on the Wellspring school campus in Kigali. I decided to take a short walk to buy some groceries to tide us over the next few days. Despite being in an unfamiliar town I felt confident in making the 1 km walk by myself. As soon as I was out of the gate I found myself the only white person in a steady stream of darker skin pedestrian traffic walking here and there. Problem was that I began to realize I didn't know where "here and there" was exactly.
Coming to a T-intersection I turned right. I was hesitant to ask directions, perhaps fearful of looking foolish, or just fearful. After walking over two kilometers I had to admit that I had made a wrong turn. I did so by asking the first white people I met; a young man and woman who had also just arrived in town for a Peace Marathon taking place on Sunday. Curiously, they were also looking for a grocery store but were not sure exactly where one was. We retraced the steps I had just taken, assuming that the correct direction was to have turned left at the T-intersection. Two kilometers back and then a further two kilometers later we found a grocery store (although it was not the one I remember passing on the way to the Wellspring campus).
Trolling repeatedly up and down the narrow aisles and trying to discern what purchases to make, I kept passing the same shoppers who must've wondered why I was having such difficulty choosing a few groceries. However, after an intimidating thirty minutes in the small store, I managed to check out and pay. The total bill was 18,900 Francs! Our host had exchanged some of my American funds for Rwandan Francs (exchange rate of some Fr.600 to one dollar), as we were unable to find any ATM that would accept either my debit card or credit card. Visa, not Mastercard, seems to dominate the African market.  Oh well, Carson's Visa will be working overtime.
Sweat-drenched, I arrived back at our temporary home almost 2 hours after I had left (having worried our hosts somewhat). No sooner had I begun explaining the course I had taken to find the grocery store than smiles appeared on the faces of our hosts. I had turned left out-of the front gate instead of right. At least I had a good workout.
After a shower (strongly suggested by my roommate, Carson), I joined Carson and our hosts for pizza, while everyone had a good laugh at my expense. Then the lights went. While power outages are common where we live, this was a sudden confrontation with an unknown darkness. It was not fear, but a sense of vulnerability that I felt. It was like being lost in a city I did not know. The feeling was both familiar and new to me at the same time.
Being lost in a strange city, experiencing a power outage or just traveling in new territory can be isolating events. In a sense, despite what may be the number of people around you, you are alone and prone to become uncertain. In fact, you sense that confidence may be your enemy, causing you to blunder ahead when caution should prevail. People with Parkinson's know what this feels like. When my tremors worsen, especially when due to increases in my adrenaline, it is as if I am the only white face in a crowd of black faces, or alone in the dark wondering what to do next.
It is at times like these that realize I must step back from the feelings and relabel the circumstances. Being in a strange country with different cultural norms, services, foods and language are all part of an adventure. Even being caught in a power outage can be enjoyed as candles are brought out and conversation continues around the warm glow and soft shadows. Parkinson's brings its own potential for adventure. Each day brings new challenges. Then again, perhaps life itself can be seen as a series of adventures, whether we make the wrong turn and have to retrace our steps or grope through the darkness to find an alternative source of light.

Shake Hands with Tomorrow

The National University of Rwanda students were as intelligent, bright-looking and hopeful as any I had ever seen. But as we stood to speak to this group of 75 young people, it was hard not to think about what it must have been like for them as very young children during those bloody 100 days exactly 18 years ago. The image of those days was not because I have any actual recollection of the events of 1994 that changed everything for Rwanda. My perspective has been primarily based on reading "Shake Hands with the Devil" written by Romeo Dallaire, the Canadian Lieutenant General in charge of the United Nations troops in Rwanda at the time, as well as seeing the Oscar award-winning movie, "Hotel Rwanda". Whatever the source of my limited perspective, approximately 1,000,000 people were the subject of mass murders during that hundred day period.

It took us 2½ hours to travel the 125 kilometers from Kigali, in the center of the small country, to Huye, the city of less than 100, 000 residents in the south (still known by its old name, Butare).  During the drive we learned a great deal from our host, Jeff, about the significant transitions that have occurred. It seems clear that great economic advances have been made, apparently outstripping other African nations for the last two years. But the morning's car ride was interesting for additional reasons. First, was the overwhelming number of people that were walking from place to place, many of them carrying large bundles of firewood, fruit or vegetables, salable goods or large containers with whatever in them. Sometimes bicycles were piled so high with material that they were impossible to ride and really served as two wheel carts. What I did not realize was that this country, which is the size of Vancouver Island or Belgium, has the densest population in continental Africa (in excess of 400 people per square kilometer) and the seventh most dense population in the world (of countries in excess of 1 million people). By comparison, Canada has a population density of less than 4, and the United States 32, people per square kilometer: this explains a great deal. 
Faced with a lack of any excess arable land, the use of terracing in this country of 1000 hills is logical from both a food production and the erosion protection point of view. Driving through the country one is struck by this small, landlocked country's greenness and cleanliness, the carefully tended small fields everywhere, and the apparent cheerfulness of its people. I also noticed that there is a lack of heavy-duty equipment of any kind, including farm machinery. Hand labor is the way things are done. While it may seem less than efficient, it does provide work. This is just one of the things that anyone visiting this country must come to grips with. The reality is that this is not a Western nation, despite its significant strides in attaining progress beyond what anyone would've expected 18 years ago.

Our presentation to the students about leadership and life challenges (including unanticipated events, such as my Parkinson's disease) seemed to go very well. They understood, as opposed to many in the Western world, that life brings adversity that must be dealt with. They also understood that these tragic events will leave scars that heal slowly. But my sense from the students, who appeared anxious to learn more, was that while they recognize the pain of the past, both personally and nationally, they are prepared to accept the challenges that lay ahead.

I learned a lesson from those students, whether they learned anything from me or not. Perhaps in the same way Rwanda is an object lesson to the world and its people. Whatever the horrific events of the past, whatever the overwhelming demands of the present, and regardless of the odds against a successful future, we must all have hope and a vision, courage and conviction, and the desire and discipline to accept our challenges and move forward. We must all shake hands with tomorrow.

Wednesday, May 23, 2012

The Eyes Tell All

Even after a "warm up and wake up" cup of coffee, I was still cold and my eyes betrayed a definite lack of sleep. Four hours of sleep to be exact because at 5 AM we were back on the same open truck with the same guide. Last night's sightings of 4 out of the Big 5 meant that we only had to find a leopard and, as our driver joked, "Then we go back to hotel, right?". Carson warned me that it took him 6 times before he saw the Big 5, and then it was a glimpse of the cats (lion and leopard) at a distance. The quality of last night's sightings was up close and personal and we could not expect the same, especially with the leopard, which is rarely seen at all.

There were only 4 passengers on the truck and that meant I had the responsibility of handling one of the spotlights (until Carson relieved me, my hands blue with cold and shaking fiercely). This job was much harder than it looked and I was now the inept neophyte. I tried to swing the light in sweeping cycles through the darkness in an attempt to illuminate the grass, bush and trees where animals might be lurking. But I was far from fluid in my motions, imagining the whole time that I was either seeing strange beasts hiding behind clumps of tall grass or, worse, fearing I was missing herds of wildebeests or parades of aardvarks. Then, just when I thought it was all useless, I saw them, blinking at us like Morse code signals in the dark. It was their eyes that gave them away. The animals seemed hypnotized by the bright light and stared at it without bolting for the shadows. The phrase 'deer in the headlights' phenomenon actually worked, with eyes glistening brightly from several hundred meters away. Despite the extraordinary natural camouflage, and even in the pitch black, the eyes gave them away. Even though humans lack the "eyeshine" of most mammals (produced by the "taptum lucidum" in their eyes), I thought of how important the eyes are in understanding another person. Thus, the saying, "the eyes are the window to the soul".

The morning wore on, with sightings of impalas, proud kudus, some grand bull elephants with huge tusks and even graceful-looking giraffes (in the distance), until the sun rose to reveal relatively flat but rugged terrain, strewn with scrub, trees, rock buttes and grass. Time was running out. Then a half shout, half whisper, came from the driver. "Leopard", he proclaimed excitedly. The regal cat stood silhouetted against the African morning sky as he stood overlooking his territory from on top of a barren clay hill. It was a perfect, unobstructed sighting from 200 meters away. But this wasn't enough for our driver.

Our large vehicle inched its way towards the leopard, lurching along a heavily rutted path. When we were about 100 meters away, the big cat slipped down the back side of the hill, out of view. All four passengers let out a collective breath that had been held since first sighting the leopard. Excited, everyone started talking at once, but the guide hushed our excited babble, "Wait, he will come back" he prophetically said. And, sure enough, just then the graceful creature reappeared and slowly moved directly towards us, stopping from time to time to stretch, or look out to the horizon. At no more than 50 meters he turned and walked parallel to our truck, glancing warily at us from time to time. He was magnificent as he slowly strolled past us only 20 to 25 meters away. It was impossible to look away from this creature and his perfect coat and his lithe muscles which stretched underneath it as he moved. He was the picture of elegance and danger, beauty and speed, as he seemed to glide past us. But it was his eyes that I was drawn to. They seemed to confidently say, "I am in control. I do not fear you. You will respect me or know the consequences."

The truck followed the leopard as he made his way toward the bushes, where we watched him disappear. Gone, we again erupted in jubilation, our driver repeatedly telling us how fortunate we had been to not only see our last of the Big 5, but to see him in such close quarters and for so long. It was as if the big spotted cat had permitted it. We had been favored.

Just as on the heights above Machu Picchu, I felt a sense of reverence, a state of awe. The eyes of the leopard seemed to peer right through me. The eyes said it all.

Tuesday, May 22, 2012

Washboard, Bladder Control and the Big Five

When the sun set at just before 6 pm it turned cold quickly. Riding in an open truck, intensely peering into the darkened landscape for the slightest movement in the scrub brush or tall grass, did not sufficiently divert me from that fact, even though this was the much-acclaimed night game drive through the otherwise closed Kruger National Park. We were traveling over washboard roads at a pace that left you moving about your seat like popping corn. Everyone was shivering and vibrating at the same time. I was laughing on the inside. Between the cold, the road and the adrenaline rush of spotting a water buffalo, elephant, rhino, lion or leopard, all 11 passengers looked like they had Parkinson's disease, making my symptoms indistinguishable.

We had been warned, in rather somber terms, that we might see nothing at all in the three-hour ride.  It's like reading the back of a prescription medicine I am taking to combat malaria. There may be no effects, or some rather nasty side effects. You will not know until you take it. Fortunately, our ride started out well, encountering a large herd of impalas, and graduated shortly thereafter to a significant group of water buffalo. One down, four to go. But then it started to get really dark, and the only apparent means of spotting wildlife was by way of two fellow passengers (one of whom was clearly struggling with the task) waving about two high-powered spotlights while bouncing down the road in the back of the truck. It was like fishing with a bare hook. I expected nothing but the odd stump or giant anthill to be illuminated. I satisfied myself that it was worth the trip by gazing at the brilliant southern hemisphere stars, all the while trying to ignore the cold and its effect on my tremor (not to mention my bladder).

But, before the next hour was over, we saw two rhinos, looking ominous even when running away from our vehicle. Shortly thereafter our driver smelled (as did everyone else except me apparently) the presence of a heavily musk-scented male elephant in heat nearby. Soon, a fair sized herd was discovered, which after a short photo-op session retreated into the night. Three down and two to go. Add to that the sampling of other animals, some quite rare, such as a civet, pack of wild dogs (only 200 of which are said to exist in the entire Kruger Park, a steenbok, porcupine and mongoose, and the night was turning into a frenzied "catch and release" session.

Then came a long stretch of silent peering through the blackness, following the frenetic spotlights as they stabbed into the wilderness, pausing here and there for a split second. It was nerve-racking work, and largely unsuccessful… at least by the passengers. Almost all of the animals spotting had been done by our driver/guide (how he did both I'll never know) without the benefit of any artificial light as if he knew where they were all along. Had I been a little more skeptical I would've guessed that the animals had been tethered in place for each dramatic discovery. After all, the two tourists shining lights into the night had the rather magical effect of keeping us all preoccupied rather than talking or complaining about not seeing the next animal on the list. However, as matters unfolded any scheme of artificiality or contrivances was completely discounted.

It was about 8:15 PM when our driver, using extraordinary peripheral vision developed over years of practice, noticed a movement some 50 yards off the road. The lights swung in the direction of his pointing, and soon discovered a sizable pride of lions, with at least five or six cubs romping along with them. All of the other animals, including the three "big five", had been viewed from a distance of a few yards. The guide muttered something like, "we're too far away to see properly" and veered off the road, bouncing slowly across the terrain towards the lions. Given that this was an open truck (except for the driver's cab, which was curiously fully enclosed), which did not have four-wheel off-road capability, I wondered about the advisability of approaching three or four (or more) lionesses, with young offspring to protect. And who knew where daddy was? We followed them at a distance of about 30 or 40 feet, awestruck and totally focused on what we were seeing, until they sauntered into the night, seemingly unconcerned about our intervention. Wow, four out of five in one evening's drive. The chances of that happening are incredibly low.

Picking up speed, while still notionally looking for the leopard (which would've made it a perfect five out of five), I knew we were headed for home. The increased speed had the effect of decreasing the body temperatures in the back of the truck, as well as shrinking bladders. Everyone seemed ready to call it a night. And yet, there was one more surprise: a rhinoceros family, single child following obediently, appeared at the side of the road and stopped long enough to show off their mud-slathered sides (apparently they roll in it to remove ticks). An inspiring finish to the day. And tomorrow… who knows?

PS. Pictures to follow!


Perched on the edge of Kruger National Park, the night was filled with sounds. Having spent most of our time in the densely populated urban areas of Lima, Santiago and Buenos Aires, we were used to harsh blaring of horns, screaming sirens, and alcohol-fueled bellowing in the night. But this continuous dialogue outside our room's sliding glass doors was the natural nocturnal language of the wild.  
There was no reason for me to be up at 4 AM, but I was. It is a typical occurrence, which reminds me again that I have Parkinson's disease and, despite being tired, insomnia is simply one of the common symptoms. This situation dictated the common response. First, I made the obligatory bathroom attendance. Unnecessary, but it seemed to be the thing to do when one wakes up in the middle of the night. I thought I had become quite adept at moving about in any given hotel room completely in the dark. However, just as pride goes before a fall, I proved that I did not have the stealth of any other nocturnal animals by promptly knocking the lamp off of Carson's bedside table onto the floor. If the crash (which was extremely loud to me even without my hearing aids) had not awakened him, then certainly my fumbling about in the dark to put things back in their place did so. He admitted later that the first thing he had checked after the heart-stopping crash was to make sure that I was not in my bed, not wanting to anticipate what to do if I was there. I was definitely awake now; more like on high alert with my heart racing and, at the same time, feeling apologetic and pathetic.

Faced with the impossible task of returning to sleep, second on the agenda was to check for incoming e-mail and commentary on the blog. Given the hours of time difference, it was not even late on the North American continent. I managed to noiselessly unplug my charging computer and retreated to a chair strategically placed in a corner of our room. Apparently, our room was close enough to the lobby area (the only Wi-Fi zone in the hotel) that we received a temperamental and weak signal in that one corner. This enabled me to connect to the Internet without having to get dressed and exit the room through an incredibly squeaky door, thereby avoiding Carson's slumber further.
Having completed my Internet diversions, I crawled back into my now cool bed and listened to the changes in the symphony that rang out through the trees as the darkness began to pale ever so slightly. Although hardly a lullaby, it seemed calming and sleep returned.
It was past 9 AM when I awoke. I immediately felt stressed, my PD tremors returning to my limbs with a vengeance. My thoughts raced into reality. I was in Kruger National Park. There was no time to be lost. There was so much to be seen. I was wasting the day by sleeping so late. As those thoughts flooded in they frightened off the peacefulness that remained after the personal nocturnal concert I had been gifted.

Sunday, May 20, 2012

Sleepless But Secure in South Africa

The facility was fortified. With four strands of electrified wire tilted to the outside, and razor-sharp glass embedded in the concrete, both found atop 10 foot high, 18 inch thick brick walls surrounding the entire compound, it seemed impenetrable. The only ready means to enter the property was through two man-doors and a car gate, all of which were remote controlled and constructed of heavy gauge steel without visible hinges, locks or handles that could be broken off to gain access. It would've taken either very large equipment or military vehicles to breach the security perimeter. Even the call buttons to gain the attention of the occupants were protected by a heavy barred steel box. Once inside the gate, safety awareness continued a priority. Each window of each building, even the upper floors, had bars cemented in place. Each exterior door was, in fact, two doors; the outside one being heavy gauge steel and deadlock bolts. I suppose one just needs to be careful, even if it is the bed-and-breakfast where we are staying in Johannesburg.
As I lay awake our first night in Africa, having endured a relatively sleepless transatlantic flight, I wondered if everyone in this country had safety and security on the top of their mind? Does fear, like a low-grade fever, simmer just below the surface for residents of the most wealthy and "western" country in Africa? I asked our South African contact, once the chief of security for Nelson Mandela during his term as the first black president in South Africa. "It's all relative." he said. And as an international consultant on personal security, he should know. We went on to discuss the concept of "normal". While homeowners living in the suburbs and outlying areas around Vancouver might well leave their doors open while down the street visiting the neighbors, and bars on the windows or doors are not dreamed of, that is a "normal" based on a different circumstance. Safety and security in one global location may be either inadequate or overkill in another. In places in South America we were told to keep the car doors locked and windows rolled up when driving. We were instructed that it might elicit gun fire to take pictures of the slum areas. Thievery of money or valuables, such as cellular phones, watches and jewelry, are matters to be mindful of in many cities around the world. It is all relative.
Perceptions of personal safety and security needs have profoundly changed, especially in our post-9/11 world. Gone are the days when a young child could walk to primary school alone, as I did starting in kindergarten. We do not leave keys in the car. We wear seatbelts. We accept the need for multiple levels of security screening at airports, even if illogical - like confiscating my 3" nail file only be given a 6 " stainless steel knife with my dinner on board.  Even entering public buildings often requires a metal detector, which we have accepted as normal. We are given instructions on how to protect ourselves from identity theft. Helmets are required to ride bicycles. It is certainly a different safety and security "normal" than it was 30 years ago. One that cannot be ignored.
Having now traveled more than 20,000 km on our trip around the world, this topic has been top of mind almost continuously. As foreigners in each location, we are labeled as exposed and vulnerable. But one cannot live by fear. If we do, the terrorists, whose sole strategy is the generation of fear, win. Fear is like Parkinson's disease. It immobilizes, causes us to tremble, and muddles our thinking. How then can we respond to the fear that PD produces?

I found some answers based on the words of an experienced international security advisor.
1. Understand the threat. Ignorance and fear of Parkinson's produce paranoia.
2. Anticipate the opposition. How will the disease attack us? How has it in the past?
3. Plan for and prepare the response. This is your life. Develop a strategy with the best chance of succeeding. You decide.
4. Have faith in your ability to prevail. Confidence is to have faith in the resources available, including your own.
5. Persevere. Fear, and PD, will not just go away. We must be mentally tough if we are to effectively face our opponents.
As Franklin Roosevelt said, “…it is time to speak the truth, the whole truth, frankly and boldly. We must not shrink from honestly facing the harsh … conditions … today. … And so, I wish to reassert my firm belief that the only thing we have to fear is fear itself.”
It feels perfectly safe in South Africa, despite the indicia of things to fear. However, I may feel differently tomorrow as we enter Krueger National Park in search of "the big five" (lions, elephants, leopards, rhinoceroses and cape buffalo).

Saturday, May 19, 2012

Argentina to Africa

A nine hour flight aboard South African Airways 227, nine time zones away from home.  It is 9 PM Buenos Aires time.  Upon landing we will have spent 19 days on the road.  Flying east, into the night, we are on the longest leg of the journey so far.  From Argentina over the Atlantic to Africa in one giant leap.  What a leap.  It seems impossible.  From one continent to another, both very different from my own.
It still feels surreal; stepping out of a dream world and into a real world of realized dreams.  Before my eyes the dreams, like rivers, born long ago in far off springs, spill into an ocean of memories.  And these moments fill and form my life, moments packed with glimpses, smiles, words, looks that give it meaning.  Truly meaningful moments have defined these past days.  I struggle to somehow keep them from merging with nearly 60 years of yesterdays.  Life seems too limited to hold them all.  I fear the lessons will be forgotten, the beauty will fade and that time and human frailty will erase the significance.

Friday, May 18, 2012

Don't Cry For Me Buenos Aires

It's raining and we are off to the airport shortly. Perhaps it is a sort of a sad farewell.  We are leaving Buenos Aires, Argentina and South America. It is the end of an episode, a chance to reflect, to ask questions. Has it been what we expected? How does it feel being 18 days and 12,000 kilometers from home? How are we managing generally? Have we got any clean clothes left? Good questions.
The Shake Up My World Tour has been a subtle shakeup so far. Important lessons galore, but nothing devastating or explosive. South America is a continent of contrasts. There are places of stunning beauty and other locations that generate a stomach-churning revulsion. We have seen beggars and businesswomen; briefcase-toting salesmen and burden-bearing human mules.  From an objective perspective, this part of the world has held few surprises.  But it has far from disappointed us.
We came to meet people, and that is where we have had our expectations exceeded.  We came to Lima, Santiago and Buenos Aires as strangers, knowing not a soul.  We are leaving with our relational investments having generated an abundant return.  We have been the beneficiaries of much love, time and kindness.  Those who have acted as our hosts (Pastor Samuel in Lima, James in Santiago and Catherine in Buenos Aires) have become remarkable friends of the first order, ones we expect to see again.  We are rich in experience because of them. 
For me, Santiago and Buenos Aires have convinced me that the global north (especially North America and Europe) have much to learn from the south.  We in the north have been smug in our plenty and largely ignored our comrades in the PD community of South America.  We need more effective communication between continents and cultures to learn from and support each other. We in the “have” nations must not overlook the needs and struggles of brothers and sisters here.  Take the work of Dr.Pedro Chana and his wife, Daniela, heroes in my eyes as they happily build CETRAM (the movement disorder clinic in Santiago, Chile, with a collaborative, innovative and integrated perspective) and encourage fellow Parkinson’s warriors, like Agustin, to take control over treatment of their disease.  Or consider the tireless commitment and leadership of Sarah Sodoti, who keeps ACEPAR (the Argentina Parkinson’s Association) functioning largely due to her own personal sacrifice.  And consider neurologists, including Nelida and Sergio at the Ramos Mejia Hospital in Buenos Aires, who donate time to provide creative experiences such as tango classes for people with Parkinson’s.  We all need to champion causes outside our local communities and share ideas, personnel and resources with others in the worldwide Parkinson’s community.  In a sentence, we must promote a readily accessible, interactive and mutually helpful Parkinson’s network, bridging all disciplines, associations and leaders in Parkinson’s communities from every nation in the world.  We cannot continue to act solely in our local best interests.  We have a common interest.  We have a common responsibility.  As Agustin said, we must not remain islands.  We will all benefit by global cooperation.

Now, off the soapbox, we have learned some things about round the world travel:
1.      Communicating with home is much easier than I thought it would be.  Skype and Facetime, not to mention email, are extraordinary tools allowing for face to face chats at minimal cost.  However, we are completely dependent on internet connections, usually WiFi (and slow internet is the bane of our existence, limiting the posting of pictures and otherwise frustrating us to the point of tears);
2.      Leaving North American expectations behind improves the quality of the experience.  We are neither the center of the universe nor the pinnacle of societal development.  We have a lot to learn from less urbane cultures;
3.      We need extra rest and time to process our experiences.  It is easy to get behind on sleep and blogging, and difficult to catch up on both.  “Cram and Jam” schedules do not work well when doing this kind of traveling;
4.      Ask lots of questions.

By the way, we have mostly clean clothes due to fast dry shirts, socks and underwear (and an inexpensive laundry service at our most recent hotel).
PS.  Sorry, but pictures would take more time to upload than I have available.

Thursday, May 17, 2012

Argentine Tango: A Threat to Dignity?

The dancing was intense, passionate and purposeful. Juan and Veronica moved as one.  This was not surprising, as they are professionals. But instead of a sumptuously decorated room with spotlights following them across a spacious dance floor, they were "performing" in a small room in the Neurological Department of the sprawling Ramos Mejia Hospital, which is found near the center of Buenos Aires.  There were 20 or so people in the tiled room when we arrived. They were part of a class, but it was not a typical dance class. Half of the "students" were people struggling with Parkinson's, displaying the shaking, shuffling and occasional freezing that can accompany the disease. It was an incredibly curious juxtaposition, fluidity interspersed with forced, struggling movements, confidence contrasted with clumsiness.

The tango embodies the pride of Argentina. It is a dance performed with strong, sometimes abrupt movement made in an open but committed embrace with hands and head held high. At the same time, it is incredibly graceful and passionate, filled with freedom and improvisation.  There are no “basic steps", although there are some classic moves, and protocol requires movement around the floor counter-clockwise.  Tango music speaks with distinctive and dramatic delivery, often with staccato, power and agility. Its essence is nostalgic, like two lovers walking, silent but both flooded with memories.

For some time dancing has been touted as a therapy preferred in treating this disease or other movement disorders. The use of music to compel repetitive movement can transform the hesitant, stumbling steps of a person with Parkinson's into flowing movement and momentum. Of all the types of dancing, the tango has been suggested as the best therapy. Perhaps it is because of the need for core focus, balance and a "walking" dance style, acting in concert, all the while maintaining a consistent embrace with one’s partner.

Whatever the reason, Argentine tango therapy is a lot of fun. It was evident when I entered the room that, despite the studied expressions on every face, there was a sense of enjoyment and accomplishment. It was as if the tango offered a momentary retreat from the mastery of PD; a welcome surrender to the memory of musical movement.  There was laughing and smiling, a sense of excitement as new moves were learned or old ones remembered.

At the urging of Sergio, the Bolivian doctor who was supervising the session (which he did without compensation, entirely on his own time), I participated despite my fear of total embarrassment.  How could I dance their dance when I could not even speak their language to beg forgiveness for my interloping?  Alas, I did better than I thought I would, thanks to excellent, patient partners.  The class obliged me with a group photo (video clip to follow). Even after a short time together, there was a feeling of camaraderie.

Before leaving to meet with others in the hospital, each person in the room gave me a kiss.  This is an almost universal custom in Argentina that took me some time to get used to.  When you greet or bid farewell to a personal acquaintance (or a friend of a friend), you shake hands or embrace with an appropriate degree of formality, and exchange kisses on respective right cheeks.  Well, you don’t actually kiss, but you do pretend to do so by making a discreet “smacking” sound on cheek contact.  This is whether the parties are the same gender or not.  It is not so much an expression of affection, although it may be that, but rather a letting down of the guard; an acceptance and respect.  The standoffishness of a handshake is replaced or supplemented with the cheek-to-cheek faux kiss.  Not a bad custom really.

The Unexpected Souvenir

"30 soles" the paunchy cab driver said too quickly when I had asked the fare.  We had learned to fix the price before stepping into a taxi or, in this case, agreeing to follow the cabby’s florescent yellow racing bomber jacket along the dark sidewalk thronged with passengers and cabbies. Jorge had been happy to accept the 25 Soles I offered (roughly $10, the fare we paid the day prior to get to the station).  We understood each other only to a limited extent but the driver took the opportunity during the 25 minute cab ride from Poyho train station to our hotel in Cuzco, Peru, to practice his poor English.  However, he chose to do so by teaching us words in his native tongue; Quechua, for which he knew the English equivalents.  It proved to be a short lesson.

The cabby knew the Terra Andina Hotel where we were returning after our one night stay at Aguas Caliente (near Machu Picchu), but decided that roadwork was going to make it difficult to get his car close so unilaterally decided we needed to get out several blocks away.   All this was in Spanish, which proved somewhat problematic as he instructed us as to how to navigate the dark, torn up streets. Then came the real problem; paying Jorge.  Carson and I had enough money between us, but not the right type apparently.  The driver refused Carson’s 20 Soles bill (and required coin), pointing out that a small corner was missing from the bill.  It seemed laughable, but he stood his ground and insisted we pay with another bill.  Carson had no other so offered American dollars.  They were refused.  Remembering I had a 100 Sole ($40) note left, I handed it to him hoping he had enough change.  Without so much as a glance at the bill he pushed the money back at me, grabbed the 20 and stormed around to the driver’s door, got in and drove off, muttering all the while in his native tongue (apparently not words he had taught us). 
Despite a couple of wrong turns, we managed to make it back to the hotel where we made arrangements to check out early the following morning in order to catch our plane to Santiago, Chile. Hungry from the long day, we decided to enjoy a late Peruvian meal (our last) at the hotel, and immediately thereafter fell exhausted into our beds in an upgraded room that we would not get to really enjoy (the nicest we'd stayed in so far).

It was not until the following morning that the altercation with the taxicab driver became logical. I was at the front desk paying for the meal that we had enjoyed after checking out the night before. I handed the clerk the 100 Sole note that had been so brusquely returned to me by the cabby. But before I could get it fully out of my wallet the expression on the clerk's face changed. Her eyes narrowed, she looked more stern, and said one word as she touched the bill and handed it back to me. "Paper", she said. In short order, she demonstrated that this note was clearly counterfeit currency. The fact that I have received the bogus bill from a Scotia Bank ATM in Lima several days prior was of no comfort. I had an expensive and unanticipated souvenir.

Traveling has made it harder to disguise my Parkinson's symptoms. The lack of proper sleep, tense interaction in a foreign language, a stressful schedule from time to time, plus the physical demands we are facing, all contribute to amplification of my tremor (at least at times). The reality is that with a modicum of observation skill I am immediately recognized as a "counterfeit". That is, what I sometimes seek is acceptance for something I am not. Faking the role of someone who does not have Parkinson's disease is tempting for me. However, it is unsustainable and falls into another falsehood; that somehow I am less acceptable as a result of the disease. I realized, through this experience with counterfeit money, that I do not need to be a counterfeit, somehow attempting to pass myself off as something more real. If I cannot accept myself, "warts and all", then others will be less able to do so. Despite being different, those of us who have disabilities are as real as any others who do not struggle with those particular challenges.  No counterfeiting required.

PS.  Internet is slow and intermittent here, making picture uploads painful.  They will follow.

Saturday, May 12, 2012

The Deconstruction of Normal OR, The Search for a Clean Washroom

The muddy footprints coming from the men's washroom in the Cuzco airport boarding area allowed ready interpretation to the sign in Spanish outside the door.  Obviously, men were at work. A new concrete and tile floor was being constructed and I was in somewhat of an anxious search for an alternative facility. Despite having arrived two hours early, leaving no concern about catching the plane from Cuzco to Lima, my inquiries confirmed that there was no other boarding area washroom, and I would have to go back through security.

Immediately across the store-lined hallway from security I located the “banos” [pronounced, "ban yos”]. As is often the case in airports there is a need to protect the security, and ensure the sanitary nature, of these amenities utilized by thousands of travelers each day. Not surprisingly, an attendant with his mop and bucket was standing just inside the doorway. He was young, and anything but diligent-looking. But when the interior of the men's washroom came into view, my skepticism evolved into certainty about any usefulness the young man may have had.

WARNING.  This blog is rated PG-14.  No pictures were taken by me to make this blog so your imagination may be required.  The men's room was small with one wall lined with three wash basins (all but one of which were occupied), one wall lined with three urinals (all of which were occupied), and one wall comprised of two stalls (both of which were occupied). I stood patiently, at least at first, beside the washroom guard, who as I then noticed had something of a glazed, faraway look in his eyes.

Now for reasons I need not go into, I was interested in the availability of a stall, which I began to study more closely, having no real alternative in my "wait next in line" position. The construction of the toilet enclosures was peculiar to say the least. They were both built out of odd pieces of plywood, two by fours and other lumber assembled and then painted in somewhat of a haphazard manner. It appeared that the normal metal cubicles have not been in place for some time.  I found myself wondering whether someone like me had been hired to build the homemade versions [not a compliment] and how long they had been standing, not that it mattered to me.

Fortunately, I had to wait as the current cubicle occupants had arrived just before me. I say that because I saw both gentlemen struggling to secure the doors after entering. But, in short order I was relieved when the closest cubicle door opened. However, I immediately realized the apparently departing occupant had only temporarily exited, his cubicle, carefully holding his unbuckled pants up. Looking frustrated, he took an allotment of sturdy toilet paper from a single large roll of the stuff that hung on a spike piercing the upright between the two stalls. Expressionless, the attendant’s eyes shifted to watch the gentleman retreat into his cubicle.
As if on cue, a curiously dressed, disheveled fellow pushed by me, apparently not noticing my "first in line" stance. Obviously, he was not at traveler (at least not by air) and I suspect that had I not lost my sense of smell years ago due to Parkinson's disease I would've noticed his odor before I saw him. Wearing an oversized, tattered, faux leather coat, with the bundled look underneath, the man bustled into the center of the room and peered into the mirror over the shoulder of a traveler who was busily washing his hands in the sink. In short order, the ragamuffin removed his toque, looked intently into the mirror, rubbed his upheaval of black hair, shrugged and replaced his stocking cap.  The man who had been washing briskly deserted the sink, which the scruffy fellow then occupied. With a little flourish he pulled from his pocket a 2 blade safety shaver and a bar of soap.  Somehow he successfully stopped up the sink, filled it up with water, lathered his grubby beard with the bar of soap and proceeded to shave.  The caretaker looked on, apparently unconcerned. 

It was then that I noticed the man at the sink next to the shaver. A worker, complete with safety glasses and orange safety overalls and vest was putting water in a liter-sized container and dumping that in a 25 liter pail on the floor.  He was one of the workers from the boarding area washroom project ferrying water from this bathroom to that.  

The frustrated man from compartment number one finally left, and I walked into the cubicle with my estimate of needed TP from the roll on the nail. Surprisingly, the stall sported a sink, but a quick test proved there was no water, not to mention the lack of any drying material.  However, the most disconcerting part was the absence a toilet seat.  This circumstance left me mentally anticipating the choices.  I quickly realized that there were no particularly graceful or sanitary alternatives.
On my return to the boarding lounge, passing classy shops selling expensive merchandise, I found myself smiling, even chuckling out loud. Yes, the bathroom scene might have been laughable, but only when viewed from a specific cultural norm. I grew up with outhouses being common (with catalogues instead of TP).  Had I fallen victim to an ignorant or arrogant definition of "normal"? Had I brought my North American expectations on this journey around the world? Had I proven to myself that I, too, was prone to see other countries and cultures through my own seriously myopic perspective?

Having Parkinson's disease is teaching me that "normal" is written in sand. A diagnosis, a wrong turn, a harsh word or a financial misstep can eradicate one's idea of what is normal. I expect that the days to come may well erase, or at least further challenge, my concept of "normal". That is probably a good thing.

Friday, May 11, 2012

We Are a Community

Her tears were real as she sobbed and struggled to find the words in Spanish to express her heartbreak. She was the mother of a 33-year-old man who had recently been diagnosed with Parkinson's disease. She knew it wasn't her fault, but even so she felt painfully helpless. He was too young and she would've taken it upon herself if she could. The other men and women in the room waited patiently and understandingly for her to express her sense of loss. I was a stranger who had asked an innocent question that had touched her tender heart. When her words were finished I felt like a friend drawn to hug this woman whose name I did not know. She accepted the hug as if knowing that, despite not understanding her words, I understood the ache of her heart.

CETRAM is not just the clinic in an old building in the Independencia district of Santiago, Chile. Nor is it simply a teaching facility for medical profession students at nearby universities. It is a community, a cooperative of professionals and people with movement disorders.  A group of friends who confront the unique demands of the disease with the collaborative assistance of other friends; neurologists, occupational therapists and physical therapists. But even that description is entirely inadequate.
This facility is not well-known to the public at large, as was evident from the fact that the taxi driver who took me there checked his maps repeatedly, and then drove to the wrong location, an upscale building behind a gate with a security guard. Perhaps I had misled the driver to expect something different, given that I wore a jacket and tie out of an abundance of caution (my rule being, always slightly over dress when uncertain about what is appropriate). In reality, the Center is located in a "casual" (completely unimpressive from an architectual view) single level building that was a mixture of mostly small, functional rooms. I was early and let myself in the front door and wandered through several rooms before locating a large recreational area in which a group of some 25 young people were laughing, talking loudly and enjoying what appeared to be a light meal. Upon appearing at the door, Daniela, the woman I spoke to on the phone the day before in order to confirm arrangements, quickly stood up and came to greet me. Like a number of others I was to meet, she performed numerous roles within the community, from exercising her professional credentials as an occupational therapist, to lead in administration, marketing and promotion, external affairs and all-around cheerleader. Her eyes and smile were filled with an infectious warmth and passion that I was to discover came from a heart that cares deeply about the people she served and served with.
Introduced to the students (who were there for the purposes of performing a practicum for their particular professional medical career studies), I was shown various occupational and physical therapy inventions, at least some of which were unique to this Center. A number of these "aids" were actually "homemade" from secondhand materials by members of the community for their own personal use. They were practical, inexpensive, and gave their users a sense of pride in the creation of them. In short order, joined by Dr. Pedro Chana, the lead neurologist and founder of the Center, I was led on a tour of the single-story building, stopping to be introduced to each person we met along the way, all of whom seemed genuinely warm and happy to be there.
Having been signaled that things were ready, Daniela and Pedro led me to a small meeting room in the center of which was what appeared to be a large kitchen table. Around the table sat 10 people, with several others occupying peripheral seats around the room. I shook hands with each one, starting with the president of the Friends of Parkinson's Group organization, Agustin. It became obvious that, despite dyskinetic movements that betrayed his PD, he was very capable at expressing himself (occasionally in English), often with humor and a mischievous inclination. I was given the opportunity to share freely the vision for my round the world journey and this blog, that being to encourage people in the Parkinson's community, and others who like me need positive input every day to battle their own unique experience with a degenerative, incurable disease. There was an excitement and warmth that filled the room as I seemed to instantly be accepted as one of the "Friends". It was not only Pedro and Daniela (who, as well as working together, were married) who expressed passion and pride for what is being created at CETRAM. But every member of the community seems to feel strongly committed to and appreciative of the community . In a sentence, it was evident that most everyone, doctors, patients (2000 of them), therapists, workers (and even the rotation of students) truly care about each other and about the inspiring mission of this humble facility.
As Pedro drove me back to the hotel I coaxed him to tell me more of his well-grounded ideals and servant-hearted approach to medicine. I felt refreshed and encouraged by him. It was clear that not all the medical profession (and hopefully not all in the legal profession either) are self-absorbed. There are clearly some who wish to redefine their calling from being a "helping oneself profession" to a "helping others profession".

It is passion-driven professionals, like Daniela and Pedro, as well as other members of "Friends", who must continue to be encouraged to come to World Parkinson Congress 2013 in Montréal. It is by sharing their story that it can be repeated and even refined by communities of "Friends" all over the economically challenged globe. In this way we can not only share each other's tears and sense of loss, but empower each other to grapple effectively with the disease that would otherwise define us. As Agustin wrote in an e-mail thanking me, we "have an island country..., but now we know that an island and other islands form an archipelago and that this can become a continent, which in our case is to achieve a better life and improvement for all of us, remember that we must be realistic, we must ask the impossible".