Just Leave Me Alone!

When life’s circumstances seem to trap you, squeezing you in their grip, applying increasing pressure and demanding a response to questions that are bombarding your universe like incoming meteors, everything gets messy.

We feel out of control (as if we ever were). Death, disease, disability, discouragement, depression, disorientation or disaster - and these are just the things that start with the D - threaten our daily existence. We find ourselves scrambling for cover, digging a foxhole, curling up in a ball, or hiding our eyes to shut out the fear, the pain, the inevitability.

“Just leave me alone!”, we shout to no one and nothing in particular. Can’t we just make it all go away? Can’t we just fix it?

The answer is “No”. We might be able to deny the situations we face for a while. Difficulties might be delayed somewhat. But ultimately, we must deal with the tough stuff, face our fears, fight back, accept suffering and sacrifice as necessary, or at least inescapable, parts of living.

Lately, too many friends are being confronted by the harshest of realities; difficulties from divorce to dying, and a veritable invasion of other sad events. Sometimes, like missiles, these struggles come in clusters, as if the destruction caused by one is not enough.

When it all seems too much, too hard, where do we turn? The Greek philosopher Epictetus said, "We cannot choose our external circumstances, but we can always choose how we respond to them".  But let me add, doing life alone, especially in the crucible when heat and pressure so easily overwhelm, is not the answer.

We are designed for interdependence, relationship, community. We cannot hope to prevail on our own. We need to share the burdens, the pain and the tragedy, especially when they don’t make sense. We need the freedom to ask” Why”, while knowing that there is no obvious answer. We need caring listeners to be our mirror. We need allies to help us fight back, maintain the hope regardless of the odds. But in the process we must risk being misunderstood, rejected, and disappointed by others. After all, we are far from perfect ourselves.

P.S.  While drafting this post I felt alone. I had planned to be attending the World Parkinson's Congress in Japan next week.  I was looking forward to being there mostly to spend time together with friends from around the world who are part of Parkinson's disease community. Unfortunately, I will not be there.  Maybe 2022?  In the meantime, let's stand together. As Michael J Fox said,“We may each have our own individual Parkinson’s, but we all share one thing in common. Hope”

Parkinson's Disease: An Unexpected Journey

It was pure fantasy.  Old, almost classical, make-believe worlds populated by strange characters with even stranger names.  And yet it was stuffed full to overflowing with significance, like a stocking hung by the fireplace on Christmas morning.

The story is about an unassuming fellow, who enjoys his books, a warm fire, good food and casual times with friends.  He had lived what we would call a simple, comfortable life in which, apart from a celebration now and then, each day was predictable.  But the unpredictable happened.  Shock, frustration, denial and confusion flooded into this unsuspecting character’s life, and in the process swept away his innocence and uncomplicated existence. 

“The Hobbit” was written by J.R.R. Tolkien 75 years ago.  It has taken Hollywood that long to do justice to its imaginary tale.  Its story is both simple and complex, suitable for children (except the very young or overprotected) and challenging for adults.  It portrays both evil and good, but recognizes the shadow of one in the other.  It shows the wizardly wisdom of Gandalf happily coexisting with simplistic naïveté of Bilbo Baggins, the hobbit.  Courage and camaraderie combine to thwart the seemingly insurmountable destructive powers of darkness and despair.  But it was its subtitle, “An Unexpected Journey”, which led me to conclude this story could be an allegory for life with Parkinson’s disease.

Seven years ago my life was pretty simple.  Staring into the future as far as I could see it all looked predictable, even comfortable.  Little did I know then that my life was about to be figuratively and literally shaken to its very core.  I was totally unprepared and left reeling from the January 19, 2006 diagnosis of Parkinson’s disease.  Life would never be the same.  The path ahead became unpredictable, leading through fields of false hope, black nights of fear and into narrow tracks in the unknown.  At times I found myself lost and alone in what seemed like a maze of caverns. 

But the truth is that, like Bilbo Baggins, I would never exchange the unexpected journey, with its challenges, friendships and adventure, for a predictable, comfortable, stay-at-home life.  No, despite the many setbacks, I would not give up the invaluable lessons I have learned along the way.  Like Gandalf said when questioned about allowing Bilbo Baggins to come along on such a dangerous journey to challenge such a formidable foe.  Some believe, he said, that “it is only great power that can hold evil in check, but that is not what I have found. I found it is the small everyday deeds of ordinary folk that keep the darkness at bay. Small acts of kindness and love. Why Bilbo Baggins? Perhaps because I am afraid, and he gives me courage.” 

Indeed, “it is the small everyday deeds of ordinary folk that keep the darkness at bay.  Small acts of kindness and love.”  The power of Parkinson’s disease in my life has been held in check by the small, everyday deeds of my friends and family.  Their reassuring words and simple acts of kindness and love give me courage to continue fighting. 

Whatever your views about Christmas (whether you are the “Happy Holiday” type or something else), there is something compelling about the story.  A baby, gifted to humanity by God yet born to ordinary peasant parents, he was destined to hold evil in check and keep the darkness at bay through sacrificial acts of kindness and love.  Why?  Perhaps because when we are afraid he gives us courage. 

Perhaps you’re a little like me as I anticipate with some trepidation the New Year, 2013.  If you are, maybe reciting words of Bilbo Baggins will give each of us courage as we embark upon the path ahead.  “I am going on an adventure” makes more sense to me than “Auld Lang Syne”.

                      

Parkinson's and the Fear of Forgetting

“How are you feeling?” I asked him too casually.

Fred and I were having coffee as the early afternoon sunshine warmed us through the large kitchen window. It was unusual weather for an October day. It was also unusual for me given that it was the middle of a workday and I was chatting, seemingly aimlessly, with an elderly friend as if I did not have any billable work to do at all. The opposite was true of course, but I had business near his home and was inexplicably drawn to stop in for a quick coffee with Fred. At his age and health, as well as his state of mind, and my too busy schedule, I was not sure I would see him again, at least not soon or be able to converse with him in the easy way we were doing that autumn afternoon.

"How are you doing?" I asked again when he hesitated in response to my question. Clearly troubled about something he slowly drew in his breath in a labored fashion. The worried expression on his face immediately made him look older than his 80 years. “Well” he said, "I am not as compos mentis as I once was. You see, I forget things. I lose things. I just cannot remember like I used to." When I responded, "Join the club!", that discussion ended and we moved on, the customary cheery smile replacing the anxious frown. But soon examples of what he had been trying to explain began springing up with embarrassing frequency. He asked me how my children were doing and how old they were four times during our time together, each time as if the queries had never been asked before. I felt mildly frustrated at having to repeat myself, and guilty about my internal reaction and impatience. When the phone rang, he tried to explain to the caller who he was visiting with. Finally, with a pained look on his face, he turned to me and said, "What is your name again?"

Although I was simply an observer, I felt Fred’s anguish, the humiliation and the discomfort with something happening that neither he nor I fully understood. It was something frightening. It was the fear of forgetting.

This episode with my friend, Fred, had an immediate impact. It beckoned memories of that same look on my father’s face as we drove along very familiar roads in the Coldstream Valley farm country where we had lived for all of my childhood. He looked at me confused and asked me where we were. It was like a jolt of electricity running up my spine.

Is this my future? Am I also destined to begin peering through a mental fog at some point? In the years to come will Parkinson's disease fill my head with cotton, as it has begun filling Fred’s mind?

How does one grapple with the fear of forgetting? Since cognitive impairment has a greater potential of striking those with Parkinson's, it is not groundless apprehension.

First, I asked myself, "Is there anything I can do about it?" The answer, like most answers given by lawyers and neurologists alike, was "Maybe". As unsatisfying as that may be, it is better than "No!". Studies have shown that regular mental exercise helps fend off the fear of forgetting to some extent. So keep those crosswords coming!

Second, I recognized that it would be unwise for me to let the fear of future forgetting paralyze the present (although I shudder a bit when I hesitate too long in order to remember someone's name). Focus on what I have, not what I might possibly lose.

Finally, I decided I needed to spend more time with my friend, Fred, and others like him. Facing one's fears, even when reflected in the face of a friend, allows us to nurture courage and compassion. Maybe it is like a blood donor donating blood on the premise that one day he may need it himself.

I was sincere when I asked Fred how he was feeling. The least I can do is hang around for the answer.

Parkinson's, Wine and Old Friends

Relationships with old friends are like wines; the good ones usually improve with age, becoming richer, deeper and more intoxicating, while the others of lesser quality lose their flavour. This was proven last night.

It actually started 30 years ago, in September of 1976, when some 179 mostly young students (me being one of them) met for the first time in classes or the "Interaction Area".  Someone lacked creativity, but that is what they called the lounge area in the bunker style building of the University of British Columbia Law School. Three years later, almost all of us were unleashed to "practice" law on an unsuspecting public. Can you imagine the fear of those first clients if the truth had been known? "Hi, my name is Gerald and I will be your lawyer today. I have a law degree but no experience so I will be practicing on you."

Of course, we learned about the law at law school. However, we never learned how to actually be lawyers until we began to "practice". In retrospect, it was like handing a scalpel to medical students, who had never performed an operation or even watched one (except on TV), and suggesting they go find someone to "practice" on. Young lawyers do not get supplied with cadavers for “practice”.

Fast-forward (and I mean fast) 30 years to a gathering of those same people, at least a reasonable sampling of them. The scene at the 30 Year Reunion of the Law School Class of 1979 was fascinating for numerous reasons. The usual differences in appearance were stereotypical. Some had aged well and others, well, they had aged.  Some put on weight and others looked like models.  Some were in Armani suits while others were in jeans.  There was the array of careers from personal life coach to an expert in “meteor law” (true!). There was a mining executive with a UBC librairy named after him and a significant number of judges.  And some of our class did not come for obvious reasons.

I was charged with giving a tribute to our classmate and friend, Hugh. As part of that 'in memoriam' I read my October 1, 2009 blog entry, "Round Multicoloured Bruises", which off-handedly mentioned my Parkinson's disease. I did not want to make a big deal of this disclosure, but I did not want to hide it either. I had tried to prepare myself for what I thought might be the responses. I knew that there would be no collective inhaled gasp, lawyers are far too controlled for that, but I was anticipating a variety of responses. Like uncorking a bottle of wine, I honestly did not know what to expect.

I was struck again by how awkward even old friends seemed to handle the news (only a few in the room knew of my diagnosis). Despite trying to be casual and take a "it's just a card I've been dealt" attitude with a chaser of "lots of people have it worse", few classmates mentioned it. Maybe they did not hear me, as apparently I was reading too quickly in my attempt to keep to my time allotment (something most lawyers find difficult, as was ably demonstrated by others later in the evening). Those that did comment seemed to have difficulty with words (not a common occurrence for members of the legal profession).

It seems to me that dealing with a person who has a disease or disability is difficult, even for my friends. There seems to be helplessness felt that does not sit comfortably with those more at home with corporate mergers, complex court cases or solving problems generally. PD just does not fit. And it cannot be hidden (at least for long) before an explanation needs to be given for the symptoms. So I had concluded that the risk had to be taken.

It may be groundless, and even a touch of paranoia, but I drove home wondering if I had just been labeled by most of my classmates.

Like the bottles of wine we auctioned for a law school scholarship fund, we all seem to want to know names and details so that we can define what, or who, is inside.  But it is time, which ages all things, that will provide proof of character and content.

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.