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Haiku for Parkinson’s: My Dyskinesia—Stella Pierides

 

h45 Dyskinesia

 

One of the major challenges that people living with Parkinson’s face, involves continuous assaults on identity. The sense of self, some of our core characteristics – what defines us as persons, including our family and other social roles, even appearance – are being slowly chipped away. Suddenly, persons with PD may find that they tremor, dribble, sway, stumble, become anosmic, feel apathetic, depressed, or anxious. After the initial shock of diagnosis, some people adjust and reorient, find new ways of coping, and take the new symptoms in their stride. Others, faced with the additional stress of “astonishing levels of harassment and discrimination” (as identified by Parkinson’s UK) never recover, withdrawing from the social world. The majority of those afflicted fall somewhere in between these extremes.

In addition to pharmacological treatment, several therapeutic approaches are being used to ameliorate symptoms in the hope that they slow the progression of the disease and allow the person to negotiate their sense of identity. I find that haiku – writing it as well as reading haiku by others – goes a long way in holding the energy and feelings (loss, anxiety, …) provoked by the changes that the disease brings with it. Haiku enables exploration and expression of the self, helping with the embarrassment and stigma of the disease.

Here is a haiku I wrote about my Parkinson’s dyskinesia, which I found helpful in dealing with the embarrassment of this particular affliction.

dyskinesia…
how tall grass
sways

A few years ago, I became aware of minute, erratic movements that my head and body started making, which amounted to what is referred to as dyskinesia. Gradually, these movements became larger and, to my dismay, I started fidgeting and swaying uncontrollably, especially while speaking. Awareness that this ‘habit’ – dyskinetic moving, that attracted and misdirected attention from what I was saying to my swaying – was caused by my long-term use of Levodopa and other medicines for Parkinson’s, increased my discomfort. Being dependent on these medications meant I couldn’t easily discontinue or replace them; and increasing the dosage, when needed, would mean that the swaying would also increase. Thankfully, I had the support to recalibrate my medication, to somewhat reduce the dyskinetic symptoms.

Right from the start of experiencing this symptom, I felt that I projected two incompatible images: that of the person with something to say, and that of the madly swaying person (drunk, not to be taken seriously…). The sense of who I was suffered a blow. Anxiety and depression rolled over me, and I tended to avoid appearing in social situations.

Sometime later, I was reminded of the reeds swaying gently that I had enjoyed watching on holidays to the North Norfolk coast (UK). This image, now transformed in my mind into tall grass swaying, enabled me to make the connection to something outside of myself. The grass did not become less or other when moved by the force of the wind … and nor would I by the force of the disease. Subsequently, musing about one of my favorite poets, Marlene Mountain’s poem “pig and i spring rain,” I found a sense of playfulness in my identifying with the reeds.

Still later, in my Qigong class, standing straight and still, and letting my body sway in the meditative position called “Bamboo in the Wind,” I felt I was becoming like bamboo in the wind: safely rooted in the earth, yet freely swaying with the wind. Once my self-absorption and preoccupation with my appearance lessened, I saw the connection between the uncontrolled sway of dyskinesia and the letting go of the need to control my movements: as “Bamboo in the Wind” I was moving like the bendable bamboo, not like an unbendable tree.

As a poet, remembering the advice given by haiku master Basho: ‘Learn of the pine from the pine; learn of the bamboo from the bamboo,’ I allowed myself to approach this grass with fewer self-preoccupations and more openness. The writer, poet, vacationer, person living with Parkinson’s, and Qigong student, came together in the haiku I wrote.

The process of crafting this haiku eventually, over time, brought together my experience of dyskinetic moving with tall grasses in nature moved by the wind, with my Qigong practice, especially when trying to “become” the bamboo with Basho’s instruction on poetry. It repaired my sense of identity, accepting the health deterioration of dyskinesia as a new challenge, reworking and transforming it into a new part of my image of “my self.”

This discovery felt good, a little too good. One day, I caught sight of myself in the mirror, “in full swing”: rather than rocking and swaying as before, I saw that I was writhing… my dyskinesia had gotten worse! I hadn’t noticed. Even more surprising, though: when I did notice, it didn’t matter as much. Why? I realized that while I couldn’t change my bodily movements or my external appearance, I had recalibrated my internal perception to one that would allow me to function socially (not withdraw).

As I write this post, the gentle swaying of the grass in my poem no longer fits the more angular, jerky, rapid dyskinetic movements I have been making recently. I am now facing a new challenge: to find the images that reflect, and help me contain, the new situation. What are these images going to be like? How will they be woven into a poem? We shall see…

 

Sources and useful URLs

Marlene Mountain. “pig and i” Frogpond, 2:3-4, 1979.

Stella Pierides. “Collateral Damage” Cho, 17.1, 2021.

The Parkinson’s UK survey showing the harassment faced by people with Parkinson’s.

The Michael J. Fox Foundation. Dyskinesia.

The Haiku Foundation. Haiku for Parkinson’s.

 

For readers interested in finding out more about Parkinson’s Disease:

The Michael J. Fox Foundation

Davis Phinney Foundation for Parkinson’s

Parkinson’s Europe

 

 

 

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. She serves on the Board of Directors of The Haiku Foundation, and she conceived and coordinates the Haiku for Parkinson’s feature.

This Post Has 14 Comments

  1. Dear Stella: Thank you for sharing your story so sensitively and openly.. Parkinson’s is a challenging road to travel. I have been traveling this road too for the last 14 years. Haiku reminds me daily to search out the essences of life and celebrate every day, come what may.

    1. Magdalene,
      Thank you, fellow traveler!
      Glad to hear that you have haiku to light the way…

  2. Thank you, Stella, for sharing your process with such transparency. As a person with Parkinson’s, I can relate to the physical, emotional and psychological tensions inherent in the condition. Your crafting of the haiku to facilitate a new sense of fluidity and sense of self is inspiring.

  3. Thank you for sharing your journey, Stella. My great grandfather and my uncle both had/have Parkinson’s. Your beautiful poetry and the work you are sharing here is most helpful and I look forward to reading more and sharing with my family.

    1. Many thanks for commenting, Reid! I am happy to hear that you find this helpful and that you will be sharing it with your family. This is what I had hoped for!

  4. One of my work colleagues has Parkinson’s and reading this reminds me how brave he is in coming in to work every day .
    Thank you Stella for providing such a beautifully written and insightful article .

    1. Jennifer, It makes me happy to hear that my post had this effect!
      Thank you!

  5. Thanks so much for your bravery and generosity in sharing your experience and lovely haiku!

  6. Thank you Stella for sharing your poetry and journey. It is so relatable and applicable to the challenges of many diseases and the hide and seek nature of self.

  7. Thank you, Stella for sharing your beautiful poem and giving us insight into your condition. I look forward to seeing the new haiku you come up with! You are an inspiration.

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