AN INTRODUCTION TO POETIC MEDICINE FOR THE NF COMMUNITY
by John Fox, PPM
The Institute for Poetic Medicine
Greetings! I am glad for this invitation from Ms. Yessika Sutawijaya to write this article on poetry-as-healer for the Facebook group, Faces of Neurofibromatosis. In February 2024, when I visited the National Cancer Centre in Singapore, one of the groups on my schedule was a two-hour healing poetry circle with people living with neurofibromatosis (NF). Yessika was a participant in that session.
What Yessika asked me for – to which I readily agreed – is write an “introduction” to poetry and poem-making as a healing modality and even more important, to show you how you can write your own poem! I have been doing this work since 1985 and have seen so much benefit and blessing. I hope that what I share here encourages you.
Before that I want to share with you why I have a deep feeling writing this in this publication. I was born in 1955 with neurofibromatosis. It was four and a half years later that it began to affect me. My right leg below the knee manifested multiple problems. This was a segmental version of NF, affecting my right leg, below the knee.
My circulatory system in my leg was fragile so that if I bruised my shin even slightly it would bleed internally and not stop, at least not right away. This resulted in a build-up of blood that needed to be aspirated with a hypodermic needle. It was not possible to aspirate all the blood and this remaining blood calcified. Building up caused it to deform my shin bone. The right ankle bones were not put together right and this caused swelling – which is what my mother suddenly became aware of when I was four and a half years old. There was significant involvement of NF tumors clinging on nerves inside the ankle.
I experienced seven surgeries between the ages of 4.5 and 18, many hospital stays, many visits to Cleveland Clinic to see my orthopedic doctor, Dr. James Kendrick. The surgeries were done to shave-off the calcium build-up, remove the tumors inside the ankle and to correct bones in the ankle itself. Leaving the hospital, I would wear a cast and walk on crutches for a few weeks. I remember the taking out of dark blue sutures along my leg. I remember scraping off a layer of dead skin after the removal of the cast. There was a somewhat weird fascination with that!
This is not a clinically accurate description; it is me trying to share my experience with NF. While all of this was happening, as significant as it was, I made every effort to carry on with my life as a child and teenager as if I was no different from anyone else my age. I skied…not well…but I skied. I skied down the Big Burn at Snowmass in Colorado! I played baseball…not that well…but because I loved it, I loved playing. In 1967 the Little League the team I was on, the Bears, won the “A” League Championship in Shaker Heights, Ohio!
There was a wonderful amateur drama group in the church my family attended and, as a child and young teen, I was in musicals like Sound of Music, Carousel and Guys & Dolls, among others. While rehearsing for The Sound of Music, running backstage in the dark, I ran into a low wooden stool and bruised my shin. This time I ended up in the hospital. The play was going on stage that next weekend and I made a plea to my doctor to get released from the hospital so I could play my part as Friedrich, one of the Von Trapp children.
This may have shocked my mother, but Dr. Kendrick agreed, and I was released to play my part. Then I went back into the hospital! I hope this gives you an idea of how I sought to live as fully as possible, challenging my limitations.
It was during this time, I was about thirteen years old, I started to make poems. I was drawn to finding poets and listening to them speak poems on vinyl records.
There were two motivating impulses. Since I started to write in 2nd grade, I loved writing words and exploring the imagination. Words held this richness and life. I wouldn’t have used the words “richness” and “life” in 2nd grade but nevertheless, I felt richness and life. The other motivating impulse – writing became a way to give voice to my experience, the experience of hospitals & my leg, to girls, and anything else I was experiencing in life.
But wait.
I want to pause here and say NF affected my three siblings, Holly, Shelley and Chris. Each had different manifestations to cope with. Their NF caused problems – all very different and difficult. I learned over time how they were each affected. Yet, more important, beyond NF, I am grateful I saw each as a unique person. Holly, Shelley and Chris – each had so much more to recognize – their gifts and challenges, their personalities and way of perceiving life.
It was my father, Jim Fox, who originated the NF. As far as I know, it was never figured out where or with who NF showed up before him. I do not know my mom and dad’s story of dealing with this – such as when did they became aware of it. Did they talk about it? I didn’t hear. I could have, should have, asked more questions. There was too much silence in our family about this.
I found ways to find help where more could be shared openly with people who were willing to listen and use their counseling skill and wisdom. I sought out spiritual teachers. For me, as I grew older, learning how to meditate made a significant difference. Meditation became a way of softening around the chronic pain in my leg. It turned out that calling to God made a difference. This would all come gradually.
But I am getting ahead of my story.
When I was eighteen, having completed my freshman year at Boston University, it was clear to me that my right leg had deteriorated to the point where it was no longer repairable. I needed to move on. In May of 1974 my leg was amputated.
That opened me up to another chapter in the book of my life. It took time (and this necessary time is individual) perhaps 7 years to become fully accepting. Those years, though I came close to despair, and had a lot of physical pain, they were also, paradoxically, some my most meaningful years of my life. I learned compassion and more acceptance for myself and for others. I knew being open to others and learning what their lives were about would help me. Poetry became a companion in my early teens – I loved writing poems. Some of those poems were about LIFE. Yet poems were also about the problem with my leg and that was life too.
The following is a poem I wrote about eight months after I lost my leg. It spoke my raw truth and yet was a very early step towards acceptance. This poem is complete in itself. Let it first speak to you however it does.
EVEN TO THIS
What my thoughts have troubled about
all through the night after night!
It's so very scary
sometimes
I feel
would rather
what's the worst that could happen?
because it just hurts too much
or having had enough of my own self-hatred
against myself, lonely is
nowhere else to go ––
time to stop feeling sorry
for myself,
time to open my heart
even to this
and call to God.
This poem came to me because I needed it when, after the amputation, I returned for my sophomore year at Boston University. In November 1974, I sustained an injury on my stump and could not use my prosthetic leg. I had to use crutches. This threw me into a maelstrom of the shame of being seen.
I stayed in my dormitory room for days fearful of going out. But that was not sustainable and eventually I gathered enough courage to go out. Writing this poem helped me to do that. I saw a counselor every week and he helped me in a deep way. John Lambdin may have asked me, “what is the worst that could happen?”
Words splayed in a fragmented way at the top of the poem are because it was sometimes difficult to complete a sentence. The poem let me show that. For me, it was a spiritual as well as a physical crisis and I was able to express that. Even if you don’t see this in the poem, I could feel it.
When we are speaking about poetry-as-healer, that is what matters. It is not about a literary, evaluative response. Those have their place but not in this place. It is different from poetry in school.
This is important for me to say about this poem: I would never tell someone else to stop feeling sorry for themselves -- but I could say that to myself. I could express that I needed help from God.
I am sure that this experience of being helped by poetry is what turned me towards considering how I could help others with poetry and poem-making. This was a winding road, not clear at all early on – but as the years unfolded, and certain people came along, being open to them, pointed me in a direction that I kept choosing to follow.
By and by, it led me to becoming a poetry therapist in 1992. By and by, giving the workshop at Brandeis University in 2017 I met Dr. Joanne Ngeow, senior genetic consultant at the National Cancer Centre, Singapore (NCCS). That eventually led to my going to NCCS and meeting Yessika Sutawijaya in the NF support group! To refresh your memory, Yessika has invited me to write this article.
What I would like to offer you here are words about writing and giving you a prompt to write. A “prompt” is simply a place to begin.
Let me first start this prompt section with something Yessika said about her experience with poetry in the workshop I led at the National Cancer Centre, in a wonderful article written by Vanessa Lee appearing in The Straits Times, a newspaper in Singapore:
Ms Yessika Sutawijaya, a 42-year-old manager in a consulting firm, attended a workshop for patients with NF that Mr Fox conducted. Ms. Yessika, who was diagnosed at 11 and uses a wheelchair, says: “It was an eye-opener. I always thought I was not an artistic person, so I went to the workshop with no expectations. But as John read the poems and encouraged us to write, the words just flowed.”
She wrote a poem on hope.
HOPE
Hope is like sun ray flaming into your face
It's like rainbow shimmering after dark rain clouds
Hope is the consolation in this fallen world
Hope is the strength, that I can carry on
Again, from The Straits Times article:
“There is no cure for NF and we don’t know if it will manifest as cancer later. There’s a lot of uncertainty. The word ‘hope’ is totally abstract, but it helps to pause from life’s busyness and take time to connect with our inner thoughts. Hope probably feels more tangible; I described it as the sun on my face and a rainbow,” she says.
Yessika, by the experience of trusting herself to let the words flow, taps into the poet within by making this beautiful and powerful image and metaphor. I treasure this capacity each of us has to create images and metaphors that say more vividly than “I was warmed…” Yessika’s image we get a felt-sense – “the flaming sun ray on the face,” seeing a “rainbow shimmering after dark clouds.”
What is it about metaphors that communicate experience? You know that the world can be cold. We know what she means by “dark rain clouds.” Life brings us those.
We can do that too – make images and metaphors! I wish I could be present with you, offering encouragement that helps your words to flow, like they did for Yessika. I say here: you can let words flow!
Here is another poem that Yessika wrote:
AS THEY ARE
And what if my words ring across the trees.
Chimes across the yards.
Feels the breeze of the winds.
Will it be good if my words can uplift someone.
Will it be good if my words bring light into darkness.
She based this poem on a poem I spoke out loud in our poetry circle. I shared this poem, As They Are, because it is so encouraging. Yet it recognizes how difficult it sometimes is to not be self-critical. What if we could treat our new poems as we would ideally wish a child would be treated? I urge you to read this poem out loud. You could ask someone to read this poem out loud to you:
AS THEY ARE
And what if my words,
my fledgling poems,
were children, were toddlers
trying first steps,
tumbling, skinning knees,
squealing with glee,
splashing mud,
making a mess,
discovering themselves?
Would I hold them
at arm's distance,
disown them, hide them,
say what I imagine
others will think —
that, after all, they
really aren't very good?
And could that be
a way of protecting them —
shielding, holding back?
I know the mockery
odd children can face.
Instead, could I let
them ramble along weedy
paths only they know?
Lean close to hear
them whisper secrets,
learn what they
need from me?
Could I love them
as they are,
give them room
to grow, a chance
to shine?
~ Barbara McEnerney
What do you appreciate about the poem? Is there a place in the poem that you gravitate towards? Do you know about “the mockery odd children can face?” My NF leg was both deformed and one leg was shorter than the other and so I had to wear a larger heel on one shoe. It looked different. I was fiercely teased so I know that mockery.
Yessika took the prompt as “and what if my words…” and created her own poem.
Here are three prompts. I am drawing these prompts from the poems in this article. Choose one that you feel is right for you now. Again, the prompt is a place to start. You can begin your poem with one of these prompts. This is important – these prompts are invitations. I encourage you to write whatever you want to write. Here they are:
Even to this…
Hope is like…
And what if my words…
You can give yourself ten minutes to write. Or take as long as you want. The ten-minute boundary helps to bring focus. You do not have to write a “complete poem.” You may have all kinds of messages you give yourself that short-circuit your creativity, for example, “This isn’t good enough.” “I must be doing this wrong.” “There is nothing here.” etc!
I encourage you to set these critical voices aside.
It is hard to do but I want you to ignore those messages. You might tell yourself that you don’t like what you wrote. That’s okay! My advice about that is to say we do not know what we have written, really, until we speak our poem out loud.
Even if you say to yourself “I don’t like this…” read the poem out loud. Read it to a non-critical friend who values listening above advice-giving – ask that person to listen to you.
This is important – I urge you to share your poem with a friend who will listen to you with care and respect. If your poem touches an especially deep, even raw place, and you see a counselor, ask that person to listen to you.
Thank you for reading this.
Each of us has our own unique story.
I am grateful for this invitation from Yessika Sutawijaya. You can read a more about her and my visit to Singapore in The Straits Times article by Vanessa Lee.
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