There is a documentary about a cross country ride to raise awareness for Huntingdon's Disease. I watched not because anyone I know is afflicted, but to be a witness to one family living with it. The Longest Journey follows an eight day continuous ride by four members of a team, with a support vehicle and posse of friends and family.
There was a quartet of sharp contrasts that caught my attention. The first was that when a person is diagnosed with HD, there is no guidebook. The physician who specializes in dealing with it said she had no promises of what life will be like. Which means that each patient has to forge their own path.
This was quite different from the Ride Across America rule book in the van. It outlined the precise route, the time table for achieving each of fifty five segments, and unflinching rules dictating how riders trade off.
Then there was the endurance of the patient, who in this story is Sharon. Her mobility began a decline which started with diagnosis and will end with death. She has grown weaker with each of the five years they have participated. But the four bicyclists, including her husband, are tough as galvanized nails. Their sinewy thighs and muscular arms grow stronger each time they compete. Her waning energy empowers them to grab more.
Thirdly, I noticed the paradox between the man on the bike, and the people around him. The latter shone a spotlight on his path at midnight. Friends joked from the open window, or drove ahead to get food. Others studied the itinerary, or ran out to buy spare parts. Sharon's daughters, neighbors and comrades did all they could to keep the men on the bike. But there was one thing they could not do.
Push the pedals.
The last dichotomy pivoted on freedom. Sharon did not sign up for the journey of Huntingdon's. But the people who love her leaped into their roles of back up with no holds barred.
I guess this is how it is. We vacillate between the stripes of what we understand and what we don't. Sure there are ten commandments, but when it comes to application we are not all in agreement.
It is unavoidable that age brings with it a decline in strength. And yet have you been in the presence of a grandmother whose convictions are like reinforced steel?
Sometimes I picture the throngs of angels, on earth and otherwise, who consider themselves lucky to be on our squad. They appear when we feel empty, or the road is dim. But there is a finite limit to what they can do. Some of the effort is up to us.
Finally, I find myself face to face with conditions I never asked for. But it is within my purview to respond. Which is incredibly liberating.
