The C2S blog draws on the arts, the social and biological sciences to explore the many meanings of health and "dis-ease." Designed to be a locus where patients, their families and professionals can meet on a level playing field, it is the natural off-shoot of the Cell 2 Soul Online Journal. We encourage the submission of ideas, essays, poems, stories, humor, and timely reviews relating to the humanities and health care.
Sam Berns, a Massachusetts high school junior whose life with the illness progeria was the subject of a recent documentary film, died on Friday, January 10, 2014 in Boston, age 17.
The full length documentary, Life According to Sam, has been produced by HBO and should be available on NetFlix one of these days. “What is aging in Sam Berns, is aging in all of us. But in Sam’s body, the process is rapidly accelerated." For more on the documentary, see MedFlix.
[From the NY Times;] Tatyana McFadden, a 24-year-old college senior, was born
with spina bifida, which left her paralyzed from the waist down. She is now a
decorated wheelchair sprinter, and she has 12 medals — three gold — from the last three
Paralympic Games, in Athens, Beijing and London.
McFadden grew up in an orphanage in St. Petersburg, where
she was never given a wheelchair. She spent her first six years walking on her
hands before Deborah McFadden, then the director of the International
Children’s Alliance, adopted her during an overseas trip. After taking to
sports in her childhood, Tatyana McFadden fought through the courts in high
school in Maryland to compete against able-bodied runners.
Her mother says that
when Tatyana arrived from Russia, she used a phrase that meant “I can do it
myself. And that’s just what she’s done. She’s never been afraid to try
Dalton Manning, 98, the last survivor of a group of World War II
military nurses known as the Angels of Bataan and Corregidor, died on
March 8, 2013. Japanese soldiers captured the American Army and Navy
nurses in the Philippines after a surprise attack on the same day Pearl
Harbor was bombed. The Japanese held the nurses in a prison camp for
three years until American forces liberated them in February of 1945.
This is an inspirational obituary. The 66 nurses were POWs for three years and three months. Ms. Manning had a long career after she was liberated and is an inspiration to read about.. NY Times Obituary.
Giffords, whose political career was cut short
when she was seriously wounded by a gunman in Phoenix on
Jan. 8, 2011, took the stage at the Democratic National Convention on
September 6, 2012 to lead the crowd in reciting the Pledge of
Allegiance." Ms. Giffords showed true grit in doing so, and puts
persons with Traumatic Brain Injuries (TBIs) in center stage.
Julia Fox Garrison
had a promising career in the computer
industry when she suffered a massive brain hemorrhage and paralyzing
stroke. While recovering, she realized that she had a lot to say. Her
book, "Don't Leave Me This Way" is worth reading for anyone with an
interest in TBI or Acquired Brain Injury (ABI).
Here are Julia's comments on Gabby's pledge:
"I watched Gabby Giffords deliver the Pledge of Allegiance with a
mixture of awe and admiration. This was not just an example of one
person's will to overcome, for Gabby has become a role model to the
nation that whatever adversity we face, we must never give up or give in
to the obstacles placed before us. Think of all the anonymous Gabbys out
there persevering in the face of life-altering hardships.
I regularly encounter survivors at brain injury conferences who
educate and inspire me by their resolve to get better. They all
demonstrate an ability to reach deep within themselves to find the
strength to continue the struggle to improve and recover. But they are
not alone, for they share the struggle with a support network of family,
friends, caregivers, and therapists who encourage and motivate the
survivors. Those in the network have their own affliction by association
and share a diagnosis of helplessness.
As I watched the broadcast, I couldn't help but contrast Gabby's
return to the public spotlight with Dick Clark returning to his New
Year's Eve special following his stroke. I recall the public discourse
being divided, on the one hand admiring his courage, and on the other,
wishing he had not returned to the airwaves. I, of course, aligned with
the former, but I understand the latter position. People with no direct
link to brain injury don't know what to expect or how react, and so they
do not want to be confronted with its impact. The difference, of
course, in these two cases is that Dick Clark's speech was seriously
impaired, while Gabby spoke forcefully and deliberately, thus gaining
the love and admiration of the audience. Clearly, she had worked long
and hard to master her delivery. Also remarkable is that Gabby is only
some 20 months out from her injury.
The road to recovery from brain injury is slow and arduous, often
measured in baby steps. Day to day, we, as survivors, feel like we
aren't making any progress, but then we compare where we are to where we
were at the time of injury and we realize that all those baby steps add
up to a leap. The hard part is realizing and accepting that no matter
how much we recover, we will not be the same person we were. How could we
be, after what we've been through; we, like Gabby, are so much wiser,
stronger, more resilient, and grateful to still be here, making a
If I can stop one heart from breaking, I shall not live in vain: If I can ease one life the aching, Or cool one pain, Or help one fainting robin Unto his nest again, I shall not live in vain. Emily Dickinson
"Doors Swinging Open" by Frank Bruni, in the September 27, NY Times, is a story that brings the Dickinson poem to mind. It chronicles the journey of Energy Maburutse, a young man with osteogenesis imperfecta from rural Zimbabwe, to Lynn University in Florida.
Banzai!! Banzai!! Banzai!!! to Sensei Keiko Fukuda of San Francisco. She recently became the first woman to earn a 10th degree black belt in judo, at the age of 98. Only three others have this martial arts highest ranking - all men living in Japan. Fukuda started learning judo more than 75 years ago in Japan and still teaches three times a week. Earning this black belt was her lifelong dream. You can see an inspiring YouTube segment on Sensei Fukuda.
When Victoria Ford was a little girl growing up in Memphis, her family was so widely known, strangers would see her at the grocery store, notice a resemblance and ask, “Are you a Ford?”
But in 2005, when Victoria was still in elementary school, the family cracked apart. Her father was arrested and later convicted of taking a $55,000 bribe. An F.B.I. undercover video posted online shows him stuffing money into his suit coat and pants.
Shortly thereafter her mother, an alcoholic, was convicted of drunken driving three times and imprisoned. In an essay titled “To a Restless Little Brother Calling for Mama in His Sleep,” Victoria wrote:
You may not understand this now, but she isn’t coming back. Not tonight. Not tomorrow. Day after that. And no, she hasn’t left anything behind — a sticky note on the refrigerator door or a quick message for the answering machine, her voice a distant echo calling your name and mine. Nothing. I’m sorry because I know you get scared when the wind blows hard like this at night, when the shadows on your ceiling shuffle as if they’ve been alive all this time. But I’m right here. And the sun will not rise for another few hours and the birds outside are still sleeping —remember Johnjohn, your favorite cardinals nestled in the Sweet Gum tree down by the mailbox? The babies wrapped in small, ruby feathers. That’s how you should be right now. Dreaming and resting and not worrying.
In 2006, the legendary film critic, RogerEber, began treatment for thyroid cancer. Enduring procedure after procedure, and spoending over a year in hospital, he eventually lost the lower part of his jaw -- and with it the ability to eat and speak.
This TED video is a tribute to the human spirit. It's better than Prozac. When you have time, spend a few mintutes with Ebert and his team. Can link to TED or watch it here.
“Look what I found at the Salvation Army store!” my wife beams, holding up a crinkled document in her hand.
The yellowed paper had caught her eye when she dropped off our yearly donation of old clothing that afternoon. She purchased it for two dollars.
I take the heavy paper document in my hand and run my fingers along the edge. It measures six by eight inches. The printing is script, all Latin, except for the calligraphied name and signature at the bottom. more»
Brian T. Maurer has practiced pediatrics as a Physician Assistant for thirty years. His "Marginal Notes" column appears periodically in the Cell2Soul Blog. The title "Marginal Notes" is taken from a quote by Henry David Thoreau: "I love a broad margin to my life."
Out of the night that covers me, Black as the Pit from pole to pole, I thank whatever gods may be For my unconquerable soul.Invictis
William Ernest Henley could have been writing about the soprano, Charity Sunshine Tilleman-Dick who tells a double story of survival -- of her body, from a bilateral lung transplant, and of her spirit, fueled by an unwavering will to sing. The TED video will inspire you to reach for your own high notes!.
About this video, Bill Zeckhausen writes: "Many life changing expressions touch us briefly, and are forgotten. This beautiful young woman shares her terrifying experience over which she triumphs with an unforgettably defiant spirit and courage. Hearing her could inspire us to live our life passion no matter what challenges or traumas we face. What a treasure!"