Hope Themed Creative Writing Project Raises Awareness for Ependymoma
— Categories: Press Release Ependymoma Community Posted on April 30, 2024
In preparation for the 2024 Ependymoma Awareness Day event, the CERN Foundation issued a call for creative writing pieces on the theme of hope. Ependymoma community members from all over the world submitted original short stories and poems in order to raise awareness for the rare disease and recognize the importance of hope. Often, people use creative writing to express thoughts and feelings that might otherwise be difficult to share. In addition, writing can help a person process their experience and offer overall wellness benefits. Sharing these individual stories with the larger community provides support and a reminder that you aren’t alone. Submissions were used for various awareness activities and shared with the community.
Writer: Kat Seeber, MD
Submission: Excerpt from The Gift of Hope
In 90 minutes, all of the frustration of having my pain, fear, persistence, suffering, and medical decisions questioned and minimized for 17 years was wiped away. I paid out of pocket since my recently renewed lack of leg function has been progressing and disregarded by my doctor. A pre-eminent neuro-oncologist on my specific, rare, neurologic cancer validated it all in just one conversation. Her appreciation for me living the impossible and defying seemingly insurmountable odds up to this point evaporated all of the tears of feeling misunderstood. And she simultaneously offered me the hope of cure and future that I have been desperate for, for almost two decades. I feel free.
Life as a survivor is more than just cancer and treatment, life or death. It is a battle for your sanity, a search for power, a dedication to hope, and an attempt to live whatever time ends up being allotted without succumbing to fear. The Gift of Hope is the intersection of that survival with what it means to be a mother and doctor in these challenging and ever-changing times. Within that journey lies the meaning of perseverance, the worthiness of the fight, and the difference that love makes.
Writer: Kim Wombough
Submission: EPENDYMOMA
Experiencing
Progress
Evolving
Nerve
Damage
Yet
Mindful
Optimism
Makes
Acceptance
Writer: Romien Van Zyl Wait
Submission: Excerpt from Silent Thunder - A Journey Of Grace With A Rare Tumour
Five life lessons by Romien Van Zyl Wait
1. Appreciate the people who are still in your life, as it is a given that some will exit your life when your normal change. Be open to new friendships and kind people who do reach out to you.
2. Keep moving. When you keep moving the illness cannot catch up with you.
3. Appreciate the small things in life. Since I was faced with the possibility of being a paraplegic or even a quadriplegic, I strive to not take anything for granted, no matter how small they are.
4. Know that you will not get all the answers and that you do not need all the answers. Take it one day at a time.
5. See people’s hearts, instead of their faces.
Writer: Kate Firth
Submission: Resistance
Invisible demon, spirit-stealer,
you flew in on unseeable wings;
night-raptor, breath-taker,
you circle in silence; you gather a storm;
you creep into my thinking
to infect me with dread
Yet here in my heart
I will meet and defeat you
for I am
love
Deep in my weakness
I have found strength:
though you will batter me,
tonight I shall bend
like the willow
for I have sky on my side, and I have mist
I am mountain, oak-filled forest,
I am moon and sun;
I grow green shoots, ferns and conifer,
I am sea and wave
I am
love
You may not stick
your suckered cells
upon my mind:
my thoughts will thwart you,
my heart out-smart you;
I am too supple for your claws
I am the clouds you cannot grasp,
I am day-shock dawn song,
bud-burst springtime,
I am light- fighter ,
hope-beam, sunray-rainbow.
I am
love
Writer: Cheri Johnson Coe
Submission: Hope for Tomorrow
The force that drives us
to keep walking the trail
The dream we keep chasing
though we are tired as hell
The gift of accepting
what we cannot control
The voice that we hear
that tells us we're bold
The quiet at night
that bring up the fears
Whispering to us
to let out our tears
The sun rising up
on another new day
Hope is the force
that makes us pray
Pray for a cure
so other can be spared
Pray for our families
our pain they share
The end comes too soon
for all of us here
Hope of more tomorrows
is what we hold so dear
Writer: Jennifer Valentine
Submission: Hope for Chris
Hope is a dream without any history of success or predictable outcome. It’s a wish with no proof or experience. To me, hope is a huge, glorious dream like one that small children make with their nighttime prayers. “I hope I get to meet Cinderella and dance with her in a castle some day!” or a plea of a parent whose child faces daunting medical challenges, “I hope that the surgeons’ hands are steady and precise today to extract the tumor perfectly so that Christopher’s healing can begin!” Though vastly different in nature, both scenarios hinge on hope. For me, hope serves as a guiding force in life, intertwining with my identity as both a dreamer and a believer.
Faith is like hope in a few ways and yet it’s also somehow, significantly different. Faith has a foundation or history for believing something to be true. I don’t “hope” the sun will rise, I have “faith” it will because history tells me so. Similarly, I don’t “hope” Chris conquers his ependymoma, I have “faith” that he will because he has…twice. He is a fighter and I have both hope AND faith that he will beat cancer. Hope, because this is a BIG ask and a little different than the last “ask” as the tumor placement, size and characteristics are different. Faith because I believe that Chris surpassed all expectations the last time, he fought this beast and I know he’ll do it again with strength and courage.
Christopher is our 14-year-old son with ependymoma. He was diagnosed at 12 years old on May 10, 2022. He has had 2 brain tumor resections 18 months apart and 60 rounds of proton radiation therapy. After both resections and during proton radiation treatments, Chris continued to run and work out. He was home 7 days after his first resection and running 5 weeks post-surgery. After his second resection, we were home after 3 days and he began running 3 weeks post-op. Running has been a part of his identity for a few years and the positive mental health aspects that come with being an athlete has likely been a highlight of his recovery both times.
Chris's story is one of quiet strength and continued resolve. While he seldom discusses his diagnosis with anyone, his doctors and specialists marvel at his resilience, knowing the battles he has fought and the victories he has achieved. Running has been both a passion and a therapy for Chris, aiding in his physical and mental recovery. His dedication to athletics, coupled with his innate fortitude, has been a cornerstone of his journey toward healing.
We have big hopes for Chris and his future. We hope he runs a 4-minute mile someday; we hope they find a cure for ependymoma. Our optimism is not blind; it is grounded in faith. Chris's journey has instilled in us a profound belief in his ability to overcome obstacles and thrive. His history of perseverance and triumph fuels our confidence in his future, both on and off the track.
Chris is a beacon of hope and inspiration. His resilience serves as a reminder that even in the face of adversity, there is room for optimism and faith. As we navigate the uncertainties of life, we cling to hope, buoyed by the unwavering belief that brighter days lie ahead.
Writer: Carolyn Turner
Submission: Landslide
I consider my diagnosis subsequent surgery and partial recovery to be a landslide
A shift, a movement
Rather than a chasm
I try not to procrastinate or ruminate
in the muddy waters of the - what if’s
The unexpected can always happen
So it’s probably wiser to expect the unexpected
I felt it was like flipping a single- sided coin
Either way I was going to loose
On the flip side
I have gained so much
Much much more than I would have
had I not been inextricably tethered to my unwanted friend
My tumour
Mr Myxo Papillary Ependymoma
To give him his full name
His nickname though is just plain and simple
Mr T
Since meeting and departing from Mr T
I have been privileged enough to have met some amazing people
Those, who themselves are living with an invisible disability
And many who care, support or lobby and have an understanding and interest
in making life better for the 11 million people in the Uk living with a neurological condition
I live, taking small hopeful steps
I challenge myself whenever possible
Not allowing my already diminished, microcosm
of a world
To close in any further
Not dwelling on the fact that Mr T may decide in the future
to pay me a visit once again
But to embrace every day
Loving and cherishing the small beautiful miracles
that continue or surround me
Grandchildren
New friendships that
Encompass me
Propping and pushing me up the hillside
Preventing a landslide