Haiku For Parkinson’s: Haiku for ME/CFS—Pris Campbell
Haiku for Parkinson’s (H4P) is a feature of The Haiku Foundation: introducing haiku to those of us living with Parkinson’s Disease (PD) and introducing PD to those ‘living with haiku.’ Based on the idea that reading/writing haiku provides an additional tool to help mitigate PD symptoms, we initially invited contributions focusing on this disease. More recent posts took us to the wider landscape of health challenges (see previous posts from this series here). November’s contribution by Pris Campbell, also going beyond the Parkinson’s landscape, describes her struggles with ME/CFS and her long journey out of despair.
Pris Campbell writes:
On September 23, 1990, two weeks after minor knee surgery, I woke up unable to keep my balance. My vision was blurred, and my legs buckled under me, they were so weak. I had head pressure and couldn’t tolerate sound or light. My eyes jerked back and forth. I couldn’t remember how to make a simple meal, but I had no appetite, anyway. My body felt like I was wearing a suit of armor, when I could hop on a bike and take 23 mile rides before the surgery, and was planned to again when PT was done. This set of symptoms was later to be diagnosed as ME/CFS, popularly known as chronic fatigue syndrome, a chronic, systemic disease associated with neurological, immunological, autonomic, and energy metabolism dysfunction, as defined by NIH. There is no cure.
snowing
through the blizzard
particles of me
Alan Summers
I had a small handful of friends who stuck by me. People I thought were friends left my life one by one after I got sick. A devastating blow. One friend of two years never called me again from the day I got ill. The below haiku expresses howI felt about loyalty most of the time.
chocolate kisses
always there when I need you
Pris Campbell
Comedians made jokes about illness….. “oh, I’m so tired. I must have chronic fatigue syndrome. I think I’ll skip work”. The medical profession in those early years didn’t think it was real. I went from being a respected psychologist to someone who was often seen as crazy. It was devastating.
The world of dew —
A world of dew it is indeed,
And yet, and yet . . .
Issa
In 1999, I found an immunologist who ran a treatment center for the ME/CFS. Among other things, he put me on a med to slow down my central nervous system and stop the minor seizures. Three weeks later, my light and sound sensitivity and eye jerking were significantly reduced. I could sign onto a computer. Re-entering the world via the internet and meeting other people with the same illness was a huge step. I was no longer isolated but still housebound with less intense versions of the initial symptoms.
chronic illness
so tired of being tired
of being tired
Randy Brooks
Once online, I found haiku. It brought me back to a childhood dream of being a writer. Initially, my understanding of the form was pretty bad. I was on a site that had me writing 5-7-5 syllables in three lines about flowers or trees. I had joined a small poetry group where, fortunately, I met Mike Rehling, gifted haiku writer and founding editor of Failed Haiku. He taught me basic things about syllable count and juxtaposition, then apparently saw potential, so invited me to join Haiku Hut, where some of the finest writers of the form were members.
Haiku became an amazing way to express, in concise form, far richer observations than I imagined before. Here are more examples that speak for me.
another birthday…
with each blown candle
my body fades
Pris Campbell
So many candles in my life were blown out that September day, so the poem speaks not only to actual birthdays.
missing wing
the angel mother kept
from childhood
Pris Campbell
This was in Haiku Dialogues with the comment, “I sense an implication that the angel is far more treasured for its brokenness.” My mother was right by my side for the six years before her death, after I, too, became broken.
the stars
in a child’s eyes
Milky Way
marilyn ashbaugh
Like the stars, our poems indeed light up the darkness. Poetry truly saved my life. I was always a gregarious person who loved sharing with friends. With haiku and other poetry, I found a working way to share back and forth again and to be creative. I have that part of my life back and am no longer in despair the way I was in my first nine years.
I highly encourage others with this illness to try learning about and writing haiku. Friends with ME/CFS who have done this are glad they did. Haiku is a succinct way to observe the world around us, however small, and is an easy way to express ourselves. I’ve added a few links below that may be helpful. Please don’t go by the articles that emphasize haiku must be 5-7-5 syllables. Yes, it can be, but the Japanese syllable count is different. You can see from the examples that English language haiku generally has shorter lines.
References
Ashbaugh, Marilyn, “stars,” Haiku Dialogues, The Haiku Foundation, August 28, 2024.
Brooks, Randy, “chronic illness,” Pulse, August 2024.
Campbell, Pris, “missing wing,” Haiku Dialogues, The Haiku Foundation, May 10, 2023, Comment by Craig Kittner, guest editor.
Campbell, Pris, “another birthday,” Seashores, March 2023.
Campbell, Pris, “chocolate kisses,” Pan Haiku Review, 2023 (two line issue).
Summers, Alan, “snowing,” Earth in Sunrise: A Course for English-Language Haiku Study (Kumamoto University, Japan), ed. Richard Gilbert and David Ostman (Red Moon Press 2017).
Resources
About ME/CFS:
ME/CFS Basics
National Institutes of Health (NIH), About ME/CFS
About haiku
“Fragment and Phrase Theory,” excellent article by Jane Reichhold discussing the basics of haiku. Very easy to read and understand.
Another helpful article, “The Power of Juxtaposition,” by Ferris Gilli.
Archive of Simply Haiku, one of the finest haiku journals before it closed. I recognize many of these writers still publishing. The haiku are excellent examples to read and learn from.
Biography
Pris Campbell writes both free verse and short forms. She has been published in a variety of journals and anthologies over the years and placed in a number of competitions. She’s had ten free verse books/ chapbooks published in the small press and one book of tanka. The books take longer to write but they get done! In 2021, she won first in the Sanford Goldstein and Marlene Mountain contests, the Ito En Bronze Award 2018, plus other awards. Her haiku appears in many prestigious journals, such as Heron’s Nest, Frogpond, Blithe Spirit, and many more. A former clinical psychologist, sailor, and bicyclist, she lives a quiet life now in South Florida.
Comments (48)
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Catch Haiku Poet Interviews with Pris Campbell! :-)
https://haikupoetinterviews.wordpress.com/2024/11/15/pris-campbell/
Hello, Haiku is new to me. I just recently learned about Haiku. I love your post! I can relate to your flow of words… my sister is battling cancer, her husband has parkinson’s, my 98 year old father passed away whom I took care of for decades….
Haiku has been a fulfilling escape for me .. thank you for sharing!
Virginia, what a time you’re having! I’m glad my haiku could speak to you!
Thanks for sharing this Pris. My heart goes out to you with some of the hearwrenching haikus etc.
You’ve an impressive record of publications both behind and ahead of you.
Wishing you further successes and sharings!
Suella
Thanks, Suella. I’m glad you enjoyed reading this.
Like Pris, my world changed overnight following a surgery. I was one of the “lucky” ones who after test after test and doctor after doctor finally found a specialist who understood that I was not “crazy”. He referred me to an online group for people with CFS/Fibromyalgia developed and led by Dr. Bruce Campbell, a leader in chronic illness at Stanford Med. School before becomingill himself. I began to learn how to live with this devastating illness. It was in this international group that I met Pris. We discovered we grew up in small Southern US towns only a few miles apart. Like Pris, I had suddenly gone from busy, active, and social to huddled in the corner of the sofa hoping for a bit of stability in my world. In this group I found a new “community”.
Pris and my former colleague and friend Michael (Mike) Stinson introduced me to haiku. I, who had written nothing but a few chapters in career-related texts and my dissertation, was fascinated by the brevity of haiku. Through Pris and Michael, I learned about Alan Summers – and found another online “community”.
Pris and I are still members of the program started by Bruce Campbell. A few years ago I had the joy of meeting Pris in person.
I almost never write about my illness. Perhaps it is time to do so – to raise awareness.
silent phone…
the invisibility cloak
of chronic illness
Margaret Walker
Human/Kind Journal, June 2019
Margaret, I was so glad you came into my life. I remember when you were insisting you could never write haiku and now your work is stunning. I love the one you posted. Pacing has helpedme stay stable and I’m grateful to Bruce Campbell, also, for all the work he did setting up the group and classes. I’ve known Alan Summers online for 22 years and he is a big influence on me too. So, my Carolina buddy, we will trudge on through together.
Pris, reading about your journey through such pain and disability has been very moving. I am heartened that poetry gave you the connection to the hearts of others, and into healing your own. Your haiku are rich in depth and beauty. Thank you for sharing this.
Neeta, thank you so much for reading this and your words about my poetry. I appreciate it so much.
Pris, thank you so much for sharing your journey with ME/CFS. It is right that more people and docs know what this disease causes. I started feeling sick one week before I was to leave to for a large talk I was going to give, I couldn’t eat, or sleep, was violently nauseous and couldn’t get out of bed. My husband and I thought I was dying. My birthday was a couple of days after this and since then I haven’t celebrated one birthday, for 19 years. Thank you Pris for bringing this to light for many. You are an amazing woman, I’m so glad we met and I’ve been taken with your ability to continue to put out such beautiful work.
Anna, thanks for talking about your journey through this illness. As I remember, in your younger healthy years you designed and sewed shirts for John Denver for his concerts. Quite a talent you can use no more.
A very moving and very helpful essay Pris. Thank you so much for sharing your experience and your beautiful work!
Thank you so much.
I have had the privilege of knowing you Pris for twenty two years and four days so far. What a fabulous friendship!! Thank you for sharing your story. You are one incredible lady ☺️❤️ xxxxx
Yes, a long time. You are my honorary wee sister. I value your frirndship.
I have known Pris Cambell since her first post-graduate position in academia. We re-established contact at the turn of the century when she was coming back into the world following her disease. Since then, she and I have collaborated on 5 books and have talked quite often and continue to do so. She is a living testament to what one can accomplish even when saddled with an awful debilitating disease.
Joe thank you for being supportive over the years!
I have been following Haiku for Parkinson’s for a while and am so happy to see other chronic diseases also being included. Stigma and the resultant social isolation that often result after being struck down by a chronic illness is a crushing experience. Thank you for your moving article, Pris. It will speak to many. Thank you too for the meaningful haiku you included. Your courage is inspiring.
At a time when all my “real life” friends deserted me after I had fallen ill, I was accepted by, and became part of the haiku and tanka community. This meant a LOT. Haiku/tanka as a succinct way of expressing myself opened many doors and led to incredible friendships. I am not prolific and neither do I have the stamina to be actively involved, and yet, my haiku/tanka efriends are always there for me. A heartfelt thank you to all of them, to Stella and Pris, and to Alan Summers for sharing Karen Hoy’s lovely haiku and alerting me to this poignant article.
Maria, I’m so glad you could relate. So many of out there are being left behind. Haiku truly is away to express ourselves!
Many thanks for sharing this Pris. I always enjoy your poems and know the health barriers you’ve had to overcome. Thanks so much for sharing this.
Sending love
Al
Al, thank you for your kind words. Much love to you.
Thank you for the article and haiku, Pris! You describe life with the illness we share so well. Your writing was the first Japanese short form poetry I read. It blew me away. Much later I tried my hand at it and found it manageable with severely limited cognitive energy.
Martha, it’s been good to make friends online. Yes, haiku is more doable than you would think!
Pris, you are a true warrior! How you produce such beautiful poetry and photos is a miracle!
Sue, from a warrior back to another warrier. Thank you!
Sue, from one warrior back to another. Thank you.
I have known Pris since 1982 when she was the director of an impatient unit where I worked during my. Psychology doctoral internship. When she was suddenly struck with CSF/ME in 1990 she was dealt a devastating blow. For nine years she languished literally struggling to stay alive. Once she found a doctor who was able to help her to get somewhat better, she discovered the riches of fellowship with others with the illness and then with writers of hiaku. She was no longer alone and was able to channel her emotions and limited energy into a dynamic form of communication. She literally blossomed! Thanks to all of you who became her support system and family. You literally saved her life!
Thank you, Pris, for sharing your beautifully written, moving journey. You have always been a light in my life and an inspiration.
Margie,
You’ve been there from the get go. Yes, it’s been hard and I’m thankful for friends who didn’t jump ship. Thank you.
Thank you so much for this, Pris. I know a few other haiku writers with ME/CFS and similar ailments and I was diagnosed in 1996 and have written a few poems on the subject. It is such a hard disease to deal with and the creativity that comes with haiku has been a blessing to me too.
aspen leaves
tremble in the wind
fibromyalgia
I hope that you are as well as you can be now, and light of heart.
Your haiku says it all. Yes, writing gives us a release. I’ve been in a bit of a crash lately so am resting more….our usual way of dealing. Hope you are as well as possible, too
Pris, thanks for sharing your journey on your illness. It’ll be a guide of inspiration and hope to those who truly need it. I support all poetry that relates to healthcare, and yours was wonderfully written. It captured the emotions and struggle to live with something so challenging everyday. Always love reading your work!
Thank you so very much.
Many thanks for bringing ME to light here. I have been living with it since 1995 and fully agree that writing short pieces, like haiku, help enormously.
Knowing my limitations and getting the pacing as balanced as possible have also been key in allowing me to muddle along without toooo many setbacks.
Kindest regards,
J
The best to you in your journey though this illness.
Wonderful piece, really speaks to my own experience the past 43 years with ME/CFS. Thank you
Rebeca, you are in the group of most housebound/isolated, yet you persevere.
Love your work, Pris.
That means so much, since I love yours, too.
Thank you, Pris & all for sharing your stories as well as further resources. The medical establishment’s shaming of people suffering these baffling illnesses is so disheartening. The societal reaction too, so sad.
I write these words from my own personal experience. And in reading all of your words I no longer feel as alone. May everybody’s courage and creativity continue to create a sense of community and healing. My best to you all.
all in my head my ass
A community really helps!
Love your one line!
I am very recently diagnosed with ME/CFS + PoTS and one of the lesser known symptoms is the dreaded ‘brain fog’ which, when it is at its worst, leaves people with ME struggling to find the right words or to process new information. Words have always been important to me and, thankfully, I still have enough attention span to both read and write haiku and tanka. These are potentially wonderful forms for expressing how it is to live with any kind of chronic illness.
Yes, the brain fog is so hard. I write in small pieces even when writing a longer poem, but haiku is so ideal for our abilities.
Pris, thank you for sharing your very moving story. Your haiku and the other haiku you’ve selected are especially poignant.
Thank you!
I remember reading about “yuppie flu.”
Dismissed it.
Now I am the one dismissed.
Your Haikus are so poignant-
Thank you!!
I loved them, too.
Dear Pris
Your article resonated with me. As a stage 3 breast cancer survivor, haiku & Japanese micro-poetry saved me. Off late, I suffer from CRF, cancer related fatigue. Not as debilitating as yours, perhaps, but one that has made my earlier super energetic self disappear for good.
Thank you for highlighting this condition. more strength & power to you.
Yours sincerely, Rupa
I wish the best for you!