Situation #1: I had just escorted the new client into the boardroom. We sat across from each other exchanging pleasantries until he leaned towards me, placed his elbows on the broad oak table and clasped his hands together as he told me his story. It seemed as if he could easily slip to his knees on the floor in an attitude of prayer, as he might have knelt beside his bed when he was a child. He seemed earnest, too earnest. He was trying too hard to make me believe what he was saying. Insist that we might, he was not believable. I found myself backing away from representing him.
Situation #2: It was a typical stand-up cocktail party, the kind where you move aimlessly around the room making small talk with people you may have never met before, and may never meet again. Everyone seemed at least slightly uncomfortable, most of them thinking about something other than the superficial conversations they are apparently engaged in. But the couple I was speaking to responded with more than the easy answers to my relatively innocent inquiries. It seems as if there was a reason for them to be disclosing, to be honest, even transparent. Within minutes there were tears shed, great pain acknowledged and difficult things shared. The truth had drawn virtual strangers together, if only briefly.
Situation #3: Our paths had crossed at several junctions, yet we had never had an opportunity to exchange more than polite pleasantries. But the couple I was seated next to at the wedding reception seemed to have a story to tell, a confession to make. In short order the secret was out. Despite the pained expression on their faces, there was also relief. The truth was known, and it was freeing. Of course, the admissions of past failure were not made without risk. There is always risk in the telling of the truth or a lie. So what is the difference? There is no potential for freedom in telling a lie. There is no potential for depth in relationship when wearing a disguise. One can only be loved to the extent one is known.
And so, too, with Parkinson’s. It seems that, despite the long history of this disease, there are many who know nothing about it. Of course, we who have it are anxious to disguise its symptoms. Self-conscious, we sit on our shaking hands or stuff them in our pockets to avoid the questioning glances. We avoid social situations that demand agility and fine motor skills to navigate crowded room with a drink in one hand and a plate of canapés in the other. We hide the ever-increasing loss of control, as if admitting to our ailments were a sign of weakness, the painful recognition of our diminished value in a society that praises proficiency and power.
April is Parkinson’s Awareness Month, but I find myself wondering what that is supposed to mean. Sure, there are fundraising events and television campaigns. And, perhaps, the general public becomes marginally more aware of something called “Parkinson’s disease”. But in a culture where life is lived at the speed of a Google search, and retention of information is limited to the overloaded capacity of human (and digital) memory, “awareness” often becomes a vague and overstated achievement. Ask any person at the end of April how much more he or she now knows about Parkinson’s disease. Not much, I expect. Why?
I have a new idea for “Parkinson’s Awareness Month”. Let those of us who have this chronic, degenerative and incurable disease just tell the truth to a few who might be interested in listening. Certainly, there are risks, but isn’t it better that the truth be told, the whole truth and nothing but the truth? How can we advocate awareness when we are afraid to share the truth?http://www.youtube.com/watch?v=IH-1-00cQok