I was delighted to see CFIDS represented in the 1998 Winter Olympics by speedskater Amy Peterson, but it was bittersweet and filled me with a desire to tell you about some of the amazing people whose stories and creative writing have crossed my desk for Shadow & Light: The Voice of CFIDS and Skywriters literary magazine and through friendships within the CFIDS/fibromyalgia community. The quotes preceding each story are from each of these heroes I would like you to know.
I hold the hand of no heavenly Father,
I see we are children walking alone,
We leave our footprints in the sand,
They are kissed by the sea and then gone.
Kathleen spends almost every day alone in a tiny, environmentally controlled apartment. She rarely has guests for several reasons: the odor of perfumes, deodorants and other toxins make her deathly ill for weeks or more, and most people cannot stand the stringent temperature controls she must maintain in her home to avoid flying into what she calls “the flu from hell.”
Once in awhile, she attends a meeting for writers and artists. She is both. She writes beautiful poems, has a novel under her belt, and has finished a play since we met in 1993. Her allergies prevent her from painting, as does the exhaustion from the physical movement required to paint full-sized canvases. But for my birthday one year, she painted “Lazarus Flower,” an original watercolor based on one of my poems, and it is in an honored place in my living room.
She is a hero because she is a friend who can see inside my soul, beyond the agonies of CFIDS. She gave me my first pastels, opening a new horizon for me, guiding me. Despite the poor correspondent I have become because of sickness, she is there when I call, consoling me and always, always leaving me in laughter. She is a friend to the downtrodden and ill, finding joy in being able to go out for a doughnut and coffee some mornings.
Despite her lonely lifestyle, she goes on. She says, “Tara, this disease is so crazy that you’ve got to laugh. What else are you going to do to stay alive?” She doesn’t have family to help her, has one or two good friends where she lives, doesn’t have help with survival. No one cooks her a meal or cleans her house, but she goes on. On the outside, she is laughing. On the inside, she is courageously facing hell on earth. Why is she a hero? She is a survivor, and she lives by laughing and creating…alone.
In pain, he sleeps
under the generous willow…
a strong arbor be,
to attend his spirit way to peace.
Imagine an artist who can’t stand the pain of putting brush to canvas, so she spends what little time her body will allow cutting magazines, books and catalogs to create collages and impastos. Creativity keeps Barbara alive. Why is she a hero? She is not selfish. She shares words and techniques, letters and laughter, even sends angels my way, or to those who need them most.
Despite extraordinary pain, extremely undermedicated in a world where many doctors fear regulatory commissions regarding opioids, despite the torture she lives with daily, she is a real friend. Not only is she my friend, but she spends 2½ hours a day, when her body will allow her to, writing to other PWCs, helping them stay strong. There are days when she says to me, “I’d give anything for just one meal, Tara.” Yet she is not bitter. She has two grown daughters with CFIDS, and she does all she can to put them first, even though she is too ill to open a can of soup for dinner, or if she does, she is too tired from the ordeal to eat her hard-earned reward.
Barbara is a woman whose heart is overflowing with the love of a mother lion and friendship that never will end. She is enchanting to those lucky enough to meet her. She is a survivor, skating on the thin ice of horrendous unending pain, too ill to find the right doctor to say, “Yes, I see what is wrong with you and will help you.” But too many of us know how rarely that miracle happens in a PWC’s life.
In the meantime, she is bright, intelligent and full of laughter to hide her tears. She is a symbol of a survivor from the concentration camp of CFIDS. Those who know her are truly blessed. I know I am.
…The reading of books
the writing of long, long letters
occasional bits of work
long distance telephone conversations
thinking—and trying not to think…
Susan has suffered many years with CFIDS while raising two children, one who now has an exciting career and another doing great in college. She is a wife, scholar, freelance writer, reviewer and while she was able, she offered herself as a participant in medical studies for CFIDS research, not backing out when things got painful and invasive. She’s human, and she shares her suffering, but she always has room to care for family and friends, whether in her home town or anywhere across the country. Recently I had the wonderful opportunity of spending a holiday with her in my home. She didn’t complain or obsess on symptoms, but I could see the sickness and weakness in her eyes. Those same eyes light up with accomplishments, large or small, of the people around her. To Susan, I say “BRAVO!!!” She is a true hero.
I believe there is a divine spark in all of us, and with this spark I will find my way through the quagmire of CFIDS… The greatest challenge of all is to find my place in this world. Before I go to sleep each night, I pray, “How can I still make my dreams come true?”
Faye is a very unique hero who found a way to make her dreams come true. She is a hero for many reasons, including her special brand of forever friendship. She did something very few people ever do. Faye and her husband saved a life.
When I met her, Faye was so weak and emaciated that she was met at the airport with a child-sized wheelchair. How could such a strong personality be housed in a 90-pound body, pale, shaking and in frightening pain? When we first met, she made a bed on the floor next to my hospital bed. When we met again, within a few hours, she was hospitalized. Still strong, she was lost in the quagmire of CFIDS at its worst.
Imagine my amazement when, just a few years later, she and her husband flew to China, spent 16 hours crossing rural China, and stopped at an orphanage protected by the Chinese military. They could not enter. Their baby girl was brought to them. Among a series of problems, the baby’s ears were so infected they feared she would be deaf. Now, at age 2 and perfectly healthy, she holds a book filled with pictures of Chinese people and says, “These are my people, Mommy. I’ll hug them,” as she holds the book to her as if she could hug all the people inside. “Are they your people, Mommy?” she asks, and Faye answers, “They are your people, so they are mine, too.”
Days are often hard for Faye. Being a mother can be the hardest job in the world. Her pain increased, but she found a doctor who brought her some relief. She naps with the baby, and she takes an afternoon off each week.
The trip to China and back was quite a speedskate, and she came home with the greatest gift of all. And in so doing, she saved the life of a vibrant little girl who may not have survived much longer in that orphanage. Faye has had a hard life, but it is a life full of joy. Faye, I honor you and your husband. Your family. You are my hero.
It is wonderful that we are represented by Olympic speedskater Amy Peterson. We are also represented by quiet heroes that may never make headlines. Most of the stories are laced with sadness. Perhaps Amy’s is, too. I am honored to share the lives of these special women with CFIDS. Look around. Our heroes are everywhere. Reach out and you’ll be sure to meet some of your own. poet. She has received a prestigious grant three years in a row, which has allowed her to help countless people who are homebound and ill. And all the time, she suffers excruciating invasive procedures. She tries to do stretches every day and saves time for her family’s happiness. Despite heavy pain and sickness, she cares for others and leads every letter with an enthusiastic, “How are you?!!??”and peppers her letters with “BRAVO!” and “GOOD FOR YOU!!!”
Tara Allan, a frequent contributor to the Chronicle, lives in Concord, N.C. She is a poet and a supporter of poets, despite her continuing struggle with CFIDS.