Saturday, March 23, 2019

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. 

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,

Friday, March 15, 2019

March Support Group Meeting Cancelled

Hello friends, I am sorry to announce that there will be no meeting of the Anchorage Parkinson's Disease Support Group this weekend. I am not in town and was unable to talk anyone into hosting. If you wish to meet informally, the space at the Pioneer Home is reserved and should be available. best, Peter

Friday, March 8, 2019

Inattention and Parkinson's: Walking on the Knife Edge

The following is from my blogging gig with the Northwest Parkinson's Foundation, republished by special arrangement.

A sudden stinging pain. A sickening realization: the car door was slammed on the fingers of my left hand. An instant of disbelief, how could this be happening? A struggle to beat back panic that grew with each nanosecond my captive hand was clamped in the merciless metal jaws of the door. A feeling of helplessness when it became clear I could not free myself. An urgent plea to my wife to OPEN THE FREAKIN’ DOOR!!!

No matter how many layers of bubble wrap you cover yourself with, no matter how carefully you choose your seat, no matter how deliberately you plan your route, there will be a moment when you let your defenses down. You might be too tired to notice the warning signs. You might be distracted by an attractive nuisance. Perhaps it plain may not occur to you that leaving your hand in the path of a door that might suddenly slam shut is a recipe for a pain sandwich. Or you may simply forget to keep your guard up, and then boom!
You are rudely reminded of your vulnerability.

This is true of anyone, but the consequences of inattention are more grave if you already have a serious condition like Parkinson’s Disease. Fall from a moment’s distraction, and you may break a hip. Then it’s off to the hospital, which as my father (a doctor) was fond of pointing out is no place for a sick person. Next thing you know you’re fighting for your life with an infected bed sore, and they’re measuring you for a coffin.

The thing is, not only is it impossible to avoid the vagaries of life, the random disasters of the universe, and plain old bad luck, even attempting to avoid them requires a level of paranoia that most of us can’t sustain. I don’t want to live a life of constantly sizing up situations for worst-case scenarios, and waiting for asteroids to drop out of the sky. Living in a cringe can lead to all kinds of leg-cramps, and besides, it’s exhausting. If I’m going to be exhausted, I want it to be from spending too much time on my bicycle, or from staying up too late playing music with friends. I sure don’t want to waste my time on the weariness that comes from hand wringing 24-7-365.

And speaking of wringing hands, my wife finally reached the release for the stubborn door that refused to relinquish my stinging fingers. I jerked my hand free, and gave it a close, cautious inspection, fearing the worst. The inspection yielded the joy of finding my fingers were still attached to my hand, and even more miraculously, were apparently still quite operative, having somehow escaped serious damage in spite of deep pinch marks. They have gone on to stage a complete recovery.

So it was a reminder. Bad things will happen unforeseen, painful and unpreventable. But maybe we are not as fragile as we think, Parkinson’s Disease and all. With Parkinson’s, I fall far more often than I ever thought I would. And it can be scary and consequential. But along with that, there is something else also unforeseen. I may fall more often than I would without PD, but I get up more often, too.