This past September NWPF held the 10th annual HOPE Conference, in Seattle Washington. It was a resounding success. NWPF’s executive director Steve Wright and his dedicated staff, treated us to high caliber presentations by top notch speakers. If you did not get to attend, the conference, you get to view a recorded version, available through NWPF.org
At one point during the conference several fellow PWPs asked me to blog about the presentation by Gary Vallat, his spouse Rubye and their daughter Aimie.
The Vallats shared with the audience a moving narrative of what it is to live and struggle with PD. They showed a short film documenting Gary’s adaptations to the disease. Assembled as a panel, the Vallats candidly and generously shared their individual experiences. Gary further rounded out his presentation with a reading of his poems. The film, incidentally, a poem in itself, was shot by Aimie. The Vallats emphasized that PD not only affects the PWP but the entire family. So, it takes the entire family to cope successfully. Gary, Rubye and Aimie were in agreement that PD has indeed burdened them but it has also occasioned an opportunity to express the love they have for one another. And for that, they find themselves in deep gratitude.
In his poem, “Going Public,” Gary acknowledges that doing what he is doing, presenting at conferences or support groups, making the personal – public, is not an easy task. But it is a valuable one. It builds and integrates us to community. It helps us heal. In his poetic words:
The video is shown on the “Big Screen”
at Rumi’s tavern.
This big screen is small compared to the Clyde Theatre
who is showing Mad Max at the same time.
There are some similarities,
post apocalyptic chase stories
mine the apocalypse of Parkinson’s
theirs the apocalypse of civilization.
I can only imagine what Max is doing
but this small family
is telling the story
we are living.
Questions from the audience
open the door to what lies beneath the surface
and though a tale of struggle
and unwelcome change
there is a lightness in the telling
that lets laughter join the crowd.
Despite the pain and confusion
underneath is a joy that grows
from our joining together
to receive this tale
and recognize how much we share
on the road of our trials
how important this coming together is
in our journey to completion
In another poem, “Doc Parkinson-A Eulogy,” Gary reminds us that adaptation to the PD challenge calls us to end denial, psychological resistance, downward comparisons, regrets, and fear of the future. PD is what it is. It has not gone away yet. It is best met, moment by moment.
In the storm
of my quaking body
standing in front of a crowd
holds a poem securely
anchors the forest of words
stabilizes the dancing letters
It takes a lot to beat the Doc.
search for that subtle adjustment
playing bocce or ping pong
there is no winning
or losing in this game
just being present
moment by moment.
is to imagine what it was like before
or what is coming
play the comparison game
regret what is real
of a future.
There are days
when moving spirit
weighs more than
intention can muster
so lay low
wait for it to go.
I have met resistance
when I want to close the door
grow stiff and hard
deny what is.
But to yield removes resistance
allows me to release
what is bound
If I tried to hope you away
it would only be a dream
built on defiance
forgetting love promises
to carry me home
In another poem, “Surrender,” and in the film as well, Gary concludes that successful coping calls us to accept what we cannot change, so that we can move on and live fully—in spite of PD.
Looking back on this event, what we witnessed was a lovingly executed film, the genuineness and generosity of the Vallat family, their love for one another, the quiet but resonant poems that spoke directly to the PD experience.
I remember thinking about the power of words. This needs little elaborating as we all have, in the course of our lives, been hurt by words or wounded others with them. But I was more impressed by the flip side of this coin. Words, graceful ones, soothing ones, loving ones, honest and authentic words, poetics, can also heal and bring hope.
The audience was emotionally moved. I recall observing the reaction of many conference participants. Some appeared to be in a place of deep reflection, catharsis, mindfulness. Some were in tears or working hard to contain them.
Clearly, many of us recognized that the Vallat story was our story and that their generous sharing of it affirmed that we were not isolated individuals but members of a supportive community.
This post was originally published by its proprietor, the Northwest Parkinson’s Disease Foundation. It is reproduced here with their permission.