People, not patients

Joe miller and his cases for scrap

Joe miller and his cases for scrap

I am always interested in the people I meet on the streets around Temple University Hospital and the Lewis Katz School of Medicine. I caught up to Joe Miller, 60, on Erie Avenue, just as he was steadying this load on his bike. Joe cruises the streets looking for things he can sell as scrap metal. He said he found these empty aluminum cases in the trash outside Temple University’s music school, and was on his way to sell them down on Hunting Park Avenue. “I guess the old horns don’t work,” he said. Cruising for scrap is only one way he makes a living, he says. “I do a lot of painting, and cut a little hair,” he adds. I watched him mount up and start pedaling. After a wobbly start on a very wide sidewalk, he steadied himself and headed west.

A mother calls...and reminds me of the power of stories!

This morning, I made a presentation to the chiefs and chairs at Temple University Hospital, trying to explain to them what I hope to do as director of narrative medicine, the culture of stories I hope to create at Temple Hospital and the Lewis Katz School of Medicine.

Maybe I should have just told them the story of Nellie.  What better way to convey the power of stories to heal, to lift people up, to provide dignity to even the frailest among us.

I got a call this morning from her mother, telling me Nellie had died peacefully.

Years ago, for the Inquirer, I wrote a long profile of the Rev. Elinor S. Greene _ Nellie to all who knew her. Nellie was like Katharine Hepburn in The Philadelphia Story. She lived in Chestnut Hill, attending boarding school, was beautiful and full of life and beloved with a million suitors, with a radiant smile and lively mind and irrepressible spirit and generous heart.  She earned letters in five varsity sports in high school and was president of the service club and sang like an angel.  On her way to Hampshire College in the 70s, she had been to a dance the night before, was asleep in the back seat, and her mother, attempting to change lanes on the highway, suddenly changed her mind, swerved back, and lost control of the car. Nellie at 18 was thrown. She suffered extensive brain damage, ruptured both lungs and her heart stopped twice on the operating table. But she not only survived, she persevered. After three years of rehabilitation, she went back to Hampshire College and graduated in four years, and then attended Yale Divinity School, where she was ordained a deacon.

Serving God became her salvation, changing her life from one of misery to one of joy. But over the years, her physical abilities continued to deteriorate, and her body became a tomb to her irrepressible mind.  As the years went by, she lost her speech, and her ability to walk or even stand, or swallow. She was too weak to blow out a candle, and was utterly dependent on others. She lived in a nursing home room at Cathedral Village. I met Nellie one day in 2004 at the Rocky Steps of the Philly Museum of Art, while working with Tom Gralish, who took this photo, on our book, Rocky Stories. Friends had brought Nellie there, in her wheel chair, for her to pose for her annual Christmas card photo.  “Rocky wishes he could have had the strength, the inner strength, of Nellie Greene,” said one of her companions.

I included Nellie in our Rocky book, but I wanted to write a longer story, a profile, and did in 2007. I will never forget watching Nellie in that nursing home room type a sermon. Her vision was blurry and her hand would shake horribly. With an impossibly shaky index finger she’d move slowly across the keyboard to strike a key, but invariably she’d strike the wrong one, and then slowly move that shaky hand back across the keyboard to hit backspace, and try again. It would literally take her four or five tries to strike the right letter _ letter after letter. It would take her five weeks, a grueling, exhausting marathon, to type 2000 words.  But it was through these sermons that her clever mind and soaring spirit could connect with the outside world. A parishioner would read them to the congregation on Sunday mornings.

Gradually Nellie declined further, and became entirely a prisoner in her own body, unable to communicate at all. And to those who didn’t know her, a stranger, and worse, someone without a story.

Nellie’s mother this morning left me this voicemail:

“Nellie died last night. Peacefully. You know, your article in the paper has done so much good for her because we pinned it up in her bathroom, and the nurses could know what she had done. Because you see they had no idea what Nellie had done or anything.”

Here is a link to my story on Nellie from years ago, and below that a link to my stories so far at Temple.

http://articles.philly.com/2007-04-08/news/25243152_1_backspace-poem-keyboard

https://medium.com/temples-narrative-medicine-program

A great surprise!

I recently wrote the story linked below at Temple University Hospital about a young mother who couldn't afford a car seat. The other day, I got this email from the neonatologist:

"When I came to work today, I found an envelope from a lawyer in the my mail box (yes, I thought that I was being sued).  Instead, there was a check inside it for $10,000 ...from a trust for car seats and other items for the Infant Intensive Care Unit.  It was a complete surprise....

 https://medicine.temple.edu/baby-ready-go-home-car-seat-broken-what-does-temples-nicu-do

 

A great surprise!

I recently wrote the story linked below at Temple University Hospital about a young mother who couldn't afford a car seat. The other day, I got this email from the neonatologist:

"When I came to work today, I found an envelope from a lawyer in the my mail box (yes, I thought that I was being sued).  Instead, there was a check inside it for $10,000 ...from a trust for car seats and other items for the Infant Intensive Care Unit.  It was a complete surprise....

 https://medicine.temple.edu/baby-ready-go-home-car-seat-broken-what-does-temples-nicu-do

 

A jewel in many ways

Maryanne Wurst holds up her heart-shaped stone

Maryanne Wurst holds up her heart-shaped stone

Maryanne Wurst was holding onto her walker with one hand, and leaning over to pick up a stone in the street with the other.

I asked her what she was doing.

 "I make hearts from ordinary street stones," she said.

She held up the treasure she had just collected – a weary, homely rock, one of a million on the crumbling streets of North Philly.

“See the vein here,” she said, pointing to a curved line in the rock. “This is going to be a beautiful heart."

She may have health issues aplenty, but her vision is, well, rock-solid.

She lives in senior apartment building two blocks from Temple University Hospital, and was on her way to the bank machine across from the hospital to get money for breakfast. Her Social Security check had arrived and she was taking the bus to her favorite breakfast place.

She was happy to talk, but turned her walker around so she could sit on the seat.

She is soon to be 74.  She has 8 great-grandchildren, 22 grandchildren, four children, and “one verbally adopted daughter.”

She saw my confusion.

“I verbally adopted her and she pays more attention to me than anyone else. She’s the only one who calls me every day.”

“I used to work with mentally and physical retarded,” she said. “Up until 1993 I was lifting 200 pound women by myself.”

That in part may explain why she has a large ventral hernia, as well as many other health issues, but was utterly cheerful and positive.

She pulled a beautiful black heart-shaped stone from a plastic case she carries. She found that stone on the street, and used a coarse piece of cement, also picked up in the street, to smooth it into the heart.

She uses rougher stones and cement to smooth all her stones.”

She said that despite her health issues, and need to sit often on her walker, she can still run, and often does for half a block or so.

Even though I urged her not to, pleaded with her not to, she was not to be denied.

“Here I go,” she said, and holding firmly onto her walker ran down the street and disappeared around the corner.

I hope she had a great breakfast.

when breath becomes air

Lucy Kalanithi, widow of the best selling author of When Breath Becomes Air, came to Philly recently and I heard her speak. Since I am so interested in narrative medicine, and storytelling, I wanted to know why he wrote the book, how he wrote the book, and when he wrote the book -- literally as he was dying. His widow had to finish it. It is really powerful to see a surgeon's perspective from the other side of the bed, so to speak.

https://medium.com/temples-narrative-medicine-program/when-breath-becomes-air-a-visit-from-the-authors-widow-d3b0233b8dc6#.3ajmuqp4h

 

In better days, before his death, surgeon Paul Kalanithi and his wife, Lucy, an internist.

In better days, before his death, surgeon Paul Kalanithi and his wife, Lucy, an internist.

My stories from Temple --

Zeke Emmanuel studies assisted suicide in JAMA

My former colleague Stacey Burling writes a good story today in The Philadelphia Inquirer on the latest research on physician assisted suicide -- better known among supporters as medical aid in dying or death with dignity. She interviews Ezekiel Emanuel, the Penn professor and physician, who has a long history in this issue and opposes legalizing it. The catalyst for the story is a study on the subject that ran in JAMA on Tuesday.

Here is the link to her story:

http://www.philly.com/philly/news/20160706_More_people_can_ask_for_help_in_dying__but_very_few_do.html

 

People not Patients

Zinete Kupa, 40, and her daughter, Mihane, 14, wait for lab results on a bench outside Temple University Hospital. To amuse themselves they send a selfie to family members back in Tirana, Albania, where they are from. 

 

image.jpg

"I don't feel very good, " said Zinette, whose primary care doctor in Port Richmond sent her here for tests.  Mihane, a middle child and natural caregiver in the family, came with her mother. Her dream: "to be either a fashion designer or a nurse." 

The family moved here years ago "for a better life." Hamit, the husband and father who works construction, was resting on another bench. They had another half hour to kill before the test results would be ready. Then they'd go back inside to find out what was wrong. 

 

People, not patients: Holding hands and holding up!

Standing outside the hospital, enjoying the glorious sunshine, holding hands, Sam and Claire Zieminski looked like they had a story to tell. So I stopped and introduced myself. 
They came to Temple hospital this morning for her, for an endoscopy, and all was well. But he was the real medical marvel, with triple bypass surgery in 2009 and a double lung transplant here in 2012. 
 He said he felt great _ “”like I never had anything wrong with me.”
The retired Philadelphia police officer and his wife, 71 and 70, just celebrated their 50th wedding anniversary and took a cruise.
I loved their All-American look _ her red-and-white, stars-and-stripes t-shirt and his blue one. Underneath that shirt, I joked to him, I bet you’ve got scars.
“Oh, he’s got a lot,” she said. 
“Looks like I was in a knife fight and lost,” he said. 
But at this moment, in life, it sure looked like he was winning. They both were.
They will be having a barbecue at their Bensalem home on the Fourth of July, with kids and grandkids. .

Bill Lyon at his best

Bill Lyon, the great Philadelphia Inquirer sports columnist, battles Alzheimer’s and takes us along on this journey as only he can, with honest, modesty, humor and insight.  Bill is 78, retired, and plans to write until he no longer can. Here is the first part, with links to the next three. Read along: http://www.philly.com/philly/opinion/20160605_My_Alzheimers_fight_Never_ever_quit.html?mobi=true

People not patients: On every bench there is a story...

“She was sitting sweetly, snuggled next to her two boys on the bench. She had oxygen tubing leading into her nose. But she looked young and healthy and happy. So I stopped and introduced myself, and asked her for her story.

"I need a double lung transplant caused by rheumatoid arthritis,” she said. She was 36. Her boys 11 and 7. “I don’t even know how I got it. I don’t smoke, or drink, or do drugs.”

“I did something bad once,” she said. “I committed fraud. I got in with the wrong people, and I went to prison for two years. But God has given me a second chance.”

She has a beautiful name, Arileyda Amparo, and she lives in Philadelphia. She comes to Temple Hospital every six weeks to have her blood checked. She is just waiting for an appropriate set of lungs to become available.

Why Temple? “This is the best hospital for it,” she said. “And I can see that. They treat me good. I feel safe here.”

She takes many medications. “Drugs help one thing and damage another. It’s a battle every day but God give me the strength everyday.”

Her boys were now running circles around her bench, the energy of youth. They had gotten check-ups themselves that afternoon.

I thanked her and wished her well. Their ride was here and they were gone.