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Haiku for Parkinson’s: Mood fluctuations—Stella Pierides

 

h45 Haiku for Parkinson's

 

April is Parkinson’s Awareness Month. A time to raise awareness of this disease and share information about it with the public. The aim is to highlight the urgency of finding a cure, as well as matters in need of attention while waiting for a cure. Also, to remind ourselves of the different experiences, approaches, and treatments available to help manage the condition.

April 11 is the focal day of Parkinson’s Awareness Month. A few days later, April 17, is International Haiku Poetry Day, when The Haiku Foundation (THF) invites the world to celebrate all things haiku. With this serendipitous co-occurrence in mind, I take the opportunity to draw attention to some of the lesser known non-motor symptoms of Parkinson’s, which may result in misunderstandings, withdrawal, and social isolation. In the vignette below, haiku writing helped achieve a sense of connectedness, control, and empowerment.

Here is the story.

Recently, an acquaintance visiting from a faraway country told me apologetically that she had struggled with the question whether to visit me during her time here, or not. When I asked her why, she told me the reason: she had heard that I have Parkinson’s and she didn’t want to tire me. On her visit, she expressed this worry by anxiously rushing to support me whenever I rose from my chair, which I found somewhat embarrassing.

Nevertheless, spending a few hours with my visitor transformed her, in my mind, from an acquaintance to a friend. Our time together turned out to be exciting and fun. If I could measure the extra amount of dopamine my brain produced thanks to her visit, I would. Such an enjoyable day!

In the early hours of the day after, in the grip of Parkinson’s insomnia and listening with mixed feelings to the dawn chorus, it occurred to me that ‘yesterday, my neurons had been singing all day.’ This had certainly been an ‘On’ period, as it is known in Parkinson’s circles: a time when I felt well and in control, when my symptoms were at their lowest. I jotted down:

song thrush…
the gate to my garden
always open

Coming back to this poem later on, the ‘always’ started to feel insincere! Can my gate – can I – always be open, welcoming, receptive? Wasn’t I going too far in my excitement making a pronouncement that, realistically, I would not be able to live up to?

Perhaps, it could be:

song thrush
the gate to my garden
ajar

I was painfully reminded of times when I wished to hide, to avoid my slowness, clumsiness, involuntary movements being seen; of the number of occasions I came up with one excuse or another to avoid social encounters. Often, these avoidance maneuvers took place during what is referred to as ‘Off’ time, when the pills stop working and the Parkinson’s symptoms return. In some way, the Parkinson’s ‘On’ and ‘Off’ is like the electricity supply being on the blink, just that the switching between the two states is a lot slower.

While feeling ‘Off,’ I wrote:

song thrush
the gate to my garden
slamming shut

I could hear that sound! Slam! Bang!

Almost like an echo, the tap, tap, tapping of a woodpecker nearby reoriented my attention from my ruminations to the world outside. Nature had answered my sound with one of her own. To my astonishment, I wrote:

nesting time…
the woodpecker’s drumming
on dead wood

The ‘dead wood’ in me was tap-tap-tapped awake, and I could see what my poem responding to the woodpecker was alluding to. I’d read that “rotting wood, hollow cavities, broken branches and loose bark, dead and dying trees — known as snags — may actually provide more varied habitat for all sorts of creatures than when they were alive” (see reference below). The bird’s rhythmic tapping is its way of looking for a spot where it can carve out a nest, find a mate, and nourish new life. For the bird, the “dead wood” is the foundation for the next cycle. Winter and dead wood are followed by spring and new life. Similarly, being ‘Off’ is followed by ‘On’, when everything can grow again…

Thus, on this ‘journey’, I moved from the experience of a visit by an acquaintance (that we both had felt uneasy about initially), to her departing as a friend; from enjoying the song thrush singing, through moments of doubt, bleakness, and frustration (slamming the gate) to responding to the woodpecker’s commanding, hopeful call to action and life.

People with Parkinson’s struggle with the gradual loss of motor functions as well as non-motor issues, that chisel away layers of identity. Against this gradient, haiku offers the possibility of regaining a sense of control. In the case I describe here, writing allowed me to recover a balanced attitude by arranging and re-arranging the furniture in the world of my poems (playing with opening and closing my inner gate) and to connect myself with the healing power of nature.

new hairstyle…
I look like young onset
Parkinson’s

*

Interested in trying out haiku for your Parkinson’s? The Haiku Foundation offers a free email course run by Sonam Chhoki, renowned poet and editor, to accompany you on the journey. Email us: haiku4parkinsons@gmail.com

Reference:

When Death Supports Life: Trees, Woodpeckers, and Biodiversity” in Real Gardens Grow Natives  Posted on July 14, 2022 by Eileen Stark

Resources:

About Parkinson’s

What does Parkinson’s look like? Watch this video introducing the project “Summer of Sport” by Parkinson’s Europe

Parkinson’s UK offers a number of short videos on different persons’ experiences of the condition. Check out Tony’s Parkinson’s journey and his way of managing fluctuations in his medication.

Prof Bas Bloem presents “The importance of nutrition in managing Parkinson’s disease.” Clear, informative, myth-busting!

David Sangster: short film on the masked face of Parkinson’s 

About haiku

The Haiku Foundation honors International Haiku Poetry Day (IHPD) with:

HaikuLife: the annual Film Festival video project featuring haiku films, since 2015. Hours of pleasure.

The EarthRise Rolling Haiku Collaboration: the world’s largest annual collaborative poem, written from sunrise to sunset, April 17, by Haiku poets from around the world! Why not visit, read, and post one of your own haiku. Trust the poem to communicate your experience.

Announcement of the Touchstone Awards: since 2010, honoring excellence and innovation in the haiku genre for both individual haiku and haibun, as well as collections of haiku. The place to read the best haiku poetry!

 

Stella Pierides is a writer and poet. Her books include "Of This World" (2017) and "In the Garden of Absence" (2012), both HSA Merit Book Award recipients. Her article “Parkinson’s Toolbox: The Case for Haiku” appeared in Juxtapositions: A Journal of Research and Scholarship in Haiku, issue 8, 2022.

This Post Has 3 Comments

  1. I love the way you describe the writing process almost as though the evolving haiku are in a symbiotic relationship with the constantly changing experience of Parkinson’s, which you capture so well.

  2. Hi Stella, I was directed to you by the good people at the Parkinson’s poets. Wall.
    I am interested in learning more about haiku.
    My only attempt so far has been a bit of fun ( see my post titled Dadjoku)on the poets wall, but I would welcome some feedback and advice from someone who knows how to write Haiku properly . Please feel free to share any tips and suggestions you might have if you are able or have any spare time.
    I look forward to your reply,..Many thanks …Mark

    1. Hi Mark,
      I am glad to hear that you are interested in learning more about haiku! As it happens, we have an ongoing one-to-one course on Haiku for Parkinson’s that may be exactly what you are looking for. As a one-to-one course, it is tailored to each participant’s needs, and it can be joined anytime and for any length of time that suits. To sign up to it, please email us at haiku4parkinsons@gmail.com. We can then put you in touch with renowned poet Sonam Chhoki, who runs the course and will be able to take this further with you.
      Thank you for the pointer to your Dadjoku! Food for thought and fun!

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