Friday, August 17, 2012

Hope for People with Parkinson's?

Everyone in the room noticed as a casually dressed man in his mid-40s stumbled a little when he got up from his chair. Brian, his name boldly printed on the lapel card pinching the collar of his shirt, excused himself as he carefully sidestepped in front of those seated in his row of folding chairs. Having made his way to the center aisle he grasped the chrome stand holding up the waiting microphone as if for support. He was an intelligent-looking man of average height and build, but the frame of his body was slightly slumped, as if he couldn't quite stand up straight because of an invisible weight on his shoulders. He raised his head to look at the panel of educated experts who had been expounding on the advances in scientific research and its progress towards a cure for Parkinson's disease. To me, the only person with Parkinson's on the Q & A panel that followed the scholarly presentations, Brian's face looked tired. 
"What should I put my hope in?" he asked with a tone of desperation, as if daring someone to answer. Brian was impatient. Parkinson's had stolen so much from him, his work, his family, and his future. And it wasn't finished yet. When no one answered he seemed to consider it an invitation to push harder for an answer to this question. "You tell us that you're excited about the long list of recent discoveries that have been made. But no one is saying we are actually any closer to finding a cure. Millions of dollars are being spent every year but we may be no closer to a real breakthrough than we were 10 years ago. It's easy for you to walk around your laboratories and medical facilities proclaiming that there have been significant developments. But you use noncommittal language and words I don't understand. All the while I'm struggling to shuffle around the block a little slower every day. I feel like I'm bleeding to death and desperately in need a bandage that no one seems to be able to find. Tell me, what should I hope for?"

Several panel members rose and attempted to underscore the fact that progress was being made in many areas, but it was complex disease. Brian was not satisfied and he turned to make his way back to his chair. "What now?" everyone seemed to be thinking. 
I stood, partly out of empathy, and partly out of a desire to stop the silence from filling the room. Hope. What is hope? Is it just na├»ve optimism? Is it a belief in the tooth fairy, Santa Claus or "they lived happily ever after" endings? Why do some people have it and others do not? Why do we need it to survive? I had to say something before the language of hopelessness went viral. 
"What's the alternative? What if we don't hope for a cure? What if we don't act on that hope by committing ourselves to finding ways to improve the lot of those of us with PD? What if we stop supporting the efforts of the researchers, clinicians and those who fund them? What then?"

"We must hope. We must place our hope in those who have devoted their lives to finding a cure. If not for our generation, then for those in the future who will suffer the plight of Parkinson's." 
My words were inadequate, not thought through and poorly organized. I had not really answered the question, and I knew it.

Having thought more about it since, I have begun to realize hope is not delivered to us because we weep a tear or cry out in pain. Hope does not happen because frustration and fear permeate our sleeping and waking hours. Hope is a decision that each of us can make or refuse to make. Yes, we can "feel" hopeful, but feelings flutter in and out like the shadows of butterflies. We cannot capture feelings.

So how do we find hope? How do we build hope? I welcome your thoughts, but for now I have concluded it requires action on our part:

  • 1.     We must be willing to step out, to seek, to dream, to risk, to make mistakes. Fear is the enemy. To tremble in the hopeless darkness is to refuse to live.
  • 2.     We must acknowledge that disappointment, discouragement and unmet expectations are byproducts of having hope. The past only defines what has been. It does not limit the future.
  • 3.     We must recognize the world is bigger than ourselves. Living is not "all about me". A generation that demands "what's in it for me?" betrays its ancestors and steals from its children.
  • 4.     We must be patient. Risk and reward, investment and return, effort and accolades, desire and gratification are often separated by time. Even by a great deal of time.
  • 5.     We must have faith, be willing to suspend our disbelief. Cynicism is simply a refusal to be hurt.  But there is a purpose behind it all, even if we don't understand it.
  • 6.     We must choose our words carefully. The language we use can help others build hope or smash it. We rise to the level of the language around us.
  • 7.     We must understand that hope is a choice for each of us to make.  Not just once but daily. Another soul may give us hope, but we must choose to hang onto it.

In the end, to give up hope is to abandon our humanity, to desert our destiny, and condemn our children. And to my friend Brian: choose hope.

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