Tuesday, June 12, 2012

Playing for Time, Never Enough

It is unforgettable. You are 43 years old. Outside is the cold and dark of January. Inside, in a small examining room you and your wife need answers. You look at the man you wish could give them. "How long have I got before incapacitation?" Your doctor has been expecting this question, but is unable to suppress a momentary look of... Pain? Irritation? He attempts an evasion " I'm always wrong" he says, offering a show of weakness as the ransom for release from our implacable need. Merciless, we press. "Ten, maybe 15 years" he finally says. A quick mental calculation immediately yields a goal. You want to see your son graduate from college in ten years. That time seems impossibly distant. The path is steep and cut with streams that threaten to wash it from beneath your feet. You shoulder your pills, your fears, your responsibilities and your hopes, strike up a dirge and begin the climb. To your great surprise, and with the help of many hands, that day arrives in brilliant sunlight. So you will celebrate. You will celebrate your beautiful son who has graduated with honors in a demanding field. You will celebrate your stalwart partner of over thirty years. You will celebrate the generosity of family members who come to be with you in this moment of reprieve from the inevitability of loss. You will celebrate the vision and discipline of those that worked to make the path smoother and thank them for their passion and compassion. You will celebrate your companions that walk the path, stumbling over roots, cursing as they trip and fall on the rocks, grunting as they rise unsteadily to their feet, stoically moving forward. It is so easy to forget what you are doing or where you are going when exhaustion sets in and gravity seems tripled. It is so easy to lose your way or your hope as sweat stings your eyes and the insects sting your flesh. Chance set you on this road, but chance did not bring you these many miles. So you mark and celebrate this moment with gratitude and gusto. And you will dare to celebrate the next ten years.

10 comments:

Chris Sparks said...

I can never express to you how much your friendship has helped me during the whole process of Team Cul de Sac. You are a wonderful inspiration to all.

Adele said...

Peter, this is beautiful and I am so glad for your celebrations.

Remember, predictions are guesses. Usually those guesses are based on past experiences. But very few people have past experienced treating PD in people who are as young as we are. Very few people have any idea what the timeline looks like in young- onset people who had DBS before they got worse and worse and worse.

You've said it before that every person's Parkinson's is unique, and that it constantly tests each person's creativity. I can't wait to see how you "celebrate the next ten years."

Amy Thompson said...

I look forward to your next similar post on this ten years hence. You give me hope.

Peter Dunlap-Shohl said...

All this is predicated on the hope that I don't get hit (again) by a car as I cross the street. Chris, I would love to take some credit for the wonderful success of Team Cul de Sac.The idea of taking PD on with cartoons is, on top of everything else, pure madcap poetry. But I was in reality a tiny part of what is your achievement, cheering lustily but faintly from far, far away. Adele, bless your smarts and your courage. Your comments enrich this blog with warmth and perspective. Amy, you have every reason for hope. For all the flaws in the health care system, for all the shortcomings of the medications, there are better ways to handle this disease with greater finesse and success than ever. In some ways I am doing better now than I was five years ago. Parkinson's Disease is a tough customer. But it is living now on borrowed time.

Steve said...

So this goal was reached (Contrats to your family, especially your son). What's the new goal?

Peter Dunlap-Shohl said...

Oops, rather begged the question there didn't I? As Thoreau said "It's not enough to be simply busy", so what will I be busy about? I'm working on that one.

Patient-Online said...
This comment has been removed by the author.
Patient-Online said...

Peter, What a wonderful, honest and well stated expression of your journey through the challenges of Parkinson's and how they affect your life and the lives of your family members. Congrats on the graduation of your son!

Peter Dunlap-Shohl said...

Thanks Dan. Sorry about the no-paragraph construction. I'm travelling now and unable to format properly with my iPad. How is the DBS project going?

DrawItOut said...

Thank you for a better outlook. I didn't need to find an excuse to celebrate, I just had to see it around me. Thank you so much.