Good-bye, Susan, Another Member of Our Support Group Departs

​I am sorry to pass along the word that another beloved member of our support group, Susan Wong, has died. Below is a note from her daughter, who was with her to the end. Susan was not a person to whom illness simply happened. She was never a bystander in her own care. She looked for ways to cope and was there to help others, even though they contended with less ferocious adversaries than she. More than one member of the support group mentioned to me that Susan was an inspiration and role model. I add my name to that list.

Dear friends –

Mom died this morning. Before we gently let go of her hand and watched her go, we provisioned her journey with our most profound love and gratitude. Enough, we hope, to sustain her for eternity (or at least until we meet again and can replenish her supplies).

 

These past months, we were given the gift of time together, during which we shared in deep conversations about love, life, and death. We read books, listened to good music, wrote, laughed, cried, reconnected and reminisced. We had the rare and frightening advantage of knowing that time was running out, and I am proud to say that we took advantage and did our best not to waste it.

Thank you for the letters, emails, texts that you've sent. I read as many of them as I could to Mom in her final days. In the coming days, I hope we can still share with one another even a few stories and pictures from her spectacular life. An overwhelming flood of which are already brimming in our own minds, as well as our inboxes. In one remembrance, an old friend wrote to me this week saying that it seemed she had lived many lives within this one lifetime. As I reflect, I agree that this indeed seems true, despite the fact that it was also cut painfully short. 

Right now, in this moment, I feel like I could fill volumes describing her life, her character, her dreams and accomplishments, her hardships, even her missteps and imperfections (maybe one day I will). But for now, I will just say that it has been an absolute honor and privilege to share in this life with her. She shaped for me a magical and inspired worldview and I will spend the rest of my life endeavoring to embody and to raise my child with the values she instilled. 

SLEEPING IN THE FOREST by Mary Oliver

I thought the earth

remembered me, she

took me back so tenderly, arranging

her dark skirts, her pockets

full of lichens and seeds. I slept

as never before, a stone

on the riverbed, nothing

between me and the white fire of the stars

but my thoughts, and they floated

light as moths, among the branches

of the perfect trees. All night

I heard the small kingdoms breathing

around me, the insects, and the birds

who do their work in the darkness. All night

I rose and fell, as if in water, grappling

with a luminous doom. By morning

I had vanished at least a dozen times

into something better.

With all of our love to each of you,

Shina

Among The Lucky Of The Unlucky

"An ambulance can only go so fast" - Neil Young

Our band was taking a quick break, a man jumped on stage and took my hand. "I heard you on the radio he said. Then he dumbfounded me by calling my interview "Brave".

Brave? Me?

You must have me confused with someone else. Someone with nothing to lose. Someone who isn't worried every day that he is finally seeing the end of his ability to drive, to draw, to write, to make music, to make love, to do, to be. Someone like... whom? Like someone who hasn't been paying attention.

I've been paying enough attention to realize I am at least among the lucky of the unlucky. I respond well to the medications available. We have the insurance to pay for expensive pills and surgery. With continued luck and discipline, the worst will be held at bay while I go on appreciating what my friend Janet calls "The finer miseries of Parkinson's".

How different does that make me from anybody else? Who isn't pushing their rock up a hill? Who Lives more than a phone call away from tragedy? Who doesn't depend on the fine calculation of other drivers on the road to keep a trip to the grocery store from becoming a trip to the emergency room? Who doesn't carry some rogue cell, a bit of themselves that will rebel and fester until it overwhelms the life it is a part of?

Herman Melville wrote of the whalers in a harpoon party at sea. Fragile men in a fragile boat, rowing toward a Sperm Whale to kill it with a small spear of iron and wood attached to a rope. The rope threaded throughout the boat and when a whale was struck the line jerked alive with deadly speed. The rope could snatch away a life or a limb on board the boat with impersonal lethality. Melville knew that we all are surrounded by such ropes and thought that a whaler was at least fortunate enough to see them.

Most of us are at least dimly aware of these ropes. Much of what we do every day is spent at some level trying to elude or escape them. To see the rope is to fear it less, to know where not to step, to keep a hand clear. What is truly frightening is what you do not know: Where the whale is, what it will do next. Facing this is the bravery required of each of us, and it is the price of a good life. This price is the same whether you are diagnosed or not. Diagnosis is merely to be shown one of the ropes.

Looking for a fight? Thinking differently about Parkinson's Disease

Everyone wants to fight Parkinson's Disease. I've used that pitch myself. But I have come to wonder if "fight" is the word we want.

For one thing, thanks to good science and good care, people with Parkinson's can expect to live as long as those who haven't got it. If, like me, you are in your 50s that means perhaps three decades of fighting ahead. That is an exhausting prospect.

Furthermore, for all the strategy and discipline required of a fighter, in the end fighting is about force and really, how far is that going to take you? What's the plan? Punch Parkinson's in the nose? Good luck with that.

Parkinson's Disease is not a thing or a person. In fact in its most notable aspect it's the very absence of something, dopamine, that causes the symptoms which we are bound by. And even these symptoms are often described in terms of what is gone, what no longer exists, the ability to move freely, to smell, to balance.

To fight Parkinson's Disease is to fight phantoms. This is a terrible form of asymmetric warfare, because though you can't fight phantoms, they can conquer you.

In making our condition into a struggle with a tireless behemoth we run the risk of asking too much of ourselves, and too little. To cast the job of living with PD as a battle with this implacable and, let's face it, undefeated foe, is to set yourself up for failure. Why not look for other metaphors that might be more fruitful?

How might we think of it? We can approach our journey through Parkinson's Disease the same way Phillipe Petit approached his high wire walk between the towers of the World Trade Center. Petit's walk on the wire required discipline, intelligence, courage, and above all balance. (He also threw in a sizable measure of artistry, but I'm trying not to ask too much.)

Discipline is what we must have to deal with the rigors of living while adhering to the routines that our illness requires of us, the pills, the mindfulness in speech, the necessity of knowing when to say no, and just as important, when to say yes. Intelligence? Cultivate a thirst to know all you can about PD. Every fact is a tool to help you live better. Courage? Courage is a tough one. It helps to have others around you that must master the same terrain. That's what the support groups are for. Balance, in the sense of knowing your limits and yet pushing against them is something that we all need to practice. The sooner the better.

Can these skills enable you to live well with Parkinson's Disease? Much depends on you. But they did carry a man through the air high above the hard and busy streets of Manhattan not so long ago.