Cell 2 Soul: The Humane Health Care Blog

Catherine Wolf, IT researcher, ALS patient, Poet, dies at age 70

Most of us use voice recognition on our devices, but we don’t often think about where it came from. One of its developers died on February 7, 2018 after enduing  ALS for 22 years. Her NY Times obituary is instructive and inspirational. "Let us now praise a famous woman!"

Catherine G. Wolf Obit.

Catherine Wolf in healthy days

 Also see her 2014 essay “Beating the Odds” in the journal Neurology Now.

In her latter years, she turned to poetry, laboriously keying in each letter of each word by eye movements.

Squeezing each word out with gargantuan intensity
Like an ancient chiseling words in Aramaic
I will be heard!
Make no mistake.
It will take more than ALS to shut me up.

“ I DIDN’T KNOW: One of her last poems was published in 2017.

It’s May 25, my birthday!  
My family surprised me by taking me to
the running trail around the lake in Pocantico Hills.
 
The afternoon sun is glancing off the lake
like a ring of fire. I never knew I loved lakes,
so placid and calm like a Buddhist master.
Whether small, like this one or large as Lake Sunapee,
providing shelter for fuzzy goslings and their parents.
I swam with my father out in Lake Sunapee floating
on our backs as he sung “I’m forever blowing bubbles.”
 
I didn’t know how much I loved hills, running up them,
me at the end of the pack, we could see the distant town
from the highest cliff, or the glorious rush of adrenaline
cross country skiing downhill.  
 
I didn’t know that I loved snow, sliding down
College Hill on trays purloined from the cafeteria,
the full moon creating diamonds of each snowflake.
Hard to believe each snowflake is unique.
 
I never knew I loved leaves, crunching brown
beneath my feet like tiny drums, or discarded beer cans.
I don’t like comparing leaves to beer cans.
Or green above me forming a glorious canopy.
 
I didn’t know how much I loved shadows, long at sunset,
tiny at noon, the length of the shadow proportional
to the cotangent of the sun’s elevation angle from the horizon.
I have a picture of my pregnant daughter’s shadow
tilting towards the shadow of her husband.
 
I never knew how much I liked meadows, the running trail
bisecting fields of yellow and purple wildflowers.
I sometimes picked a yellow to put in curly red hair.
 
I didn’t know how I liked fog, smudging edges of
buildings like a Monet painting, making oncoming
headlights into soft glow. I don’t miss driving in fog.
 
I never knew how many things I loved until I
was in my wheelchair on the trail where I used to run.

Sam Berns, Age 17, Obituary

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.

Sam gave a (12 minute) TED talk: My Philosophy for a Happy Life. (Click on link to left for better view than box below)

Sam truly epitomizes the philosophy of Invictus

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.

"I Can"

[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 anything.”

McFadden has become the preeminent wheelchair marathoner and hopes to....  Tatyana was featured in an inspirational article in the NY Times on October 11, 2013.

 

 

 

 

Last Angel of Corregidor

Mildred 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.

TBI Poster Person

""Gabby 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.

Gabby's Pledge (on YouTube)

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 positive impact."

You my contact Julia at JFG Email.

 

 

 

 

 

Help One Robin

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. 

Sensei Keiko Fukuda

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.

Success Against the Odds

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.

Read this amazing story, Finding Voice in the Pain of a Family and It's Fall, in the NY Times, Monday, May 30, 2011.

An Unconquerable Soul

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.

Marginal Notes: An Amazing Find

“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."