Rodney Curtis: What I wish caregivers knew

By RODNEY CURTIS

Attitude.

That’s everything, really. The relationship between the person who needs the care and the person who is trying to give it: It all depends on attitude.

When I first learned that I had acute leukemia—and, then, all the way through my long stays in the hospital, losing my hair and eventually a bone-marrow transplant—I heard from people these words: “I can tell you’re going to make it through this. It’s in your attitude.”

And it was.

That's Rodney hugging a friend in the summer of 2010 in the midst of his leukemia.

That’s Rodney in the baseball cap hugging a friend in the summer of 2010 in the midst of his leukemia.

Remember, “attitude” works both ways. First, there is my attitude—my perception of what I was dealing with and how I would relate to the people around me.  I am a true believer that the way you approach this whole experience says a lot about the outcome you can expect on the other end. Heather Jose calls her memoir about becoming a “cancer thriver,” Every Day We Are Killing Cancer. When she was diagnosed, she wrote those words on a little sign and carried that sign with her as a kind of motto, wherever she went.

What we are saying is: You have to approach this with your own passion, your own interests, your own personality behind it. Like Heather carried her sign—I carried my humor. I used a lot of humor, but that’s me: I love humor.

Maybe your thing is music—so you carry your music with you, wherever you go. I met a guy who decided his weeks in the hospital were his job and his hospital room was his office. Every day, his work—his job—was to get better. He thought of the nurses coming in for various reasons as co-workers coming into his office to help him do his job.

Second, the attitude of your caregivers is just as important as your own attitude. Get them on board with you. Because I loved humor, my caregivers loved to play along. I remember one day, the phone in my hospital room rang and it was a nurse, who was somewhere else at that time, laughing and saying: “Rodney Curtis! Turn on channel 7—STAT!” There was something funny on the TV that she wanted me to see. Because they knew my attitude, caregivers could become a part of that, too.

You’ve got to be honest and open.

If you suddenly find yourself needing help—let’s say you’ve just heard the diagnosis: “Cancer.” Well, I can tell you: It’s a mistake to step back from your friends and all the people who love you, if you can possibly avoid that. The best attitude includes reaching out to all the people around you. Use your connections. Use your social media. I mean, just think of all the tools and software and devices we have today to keep in touch! It’s brilliant.

And, in the first experiences you have in the role as a caregiver, you should be reaching out, too. Don’t be shy. Don’t pussy-foot around. Ask questions.

Here’s what happens all too often when someone is diagnosed with cancer: People hold back and are afraid to ask questions. They’re thinking: Ohhhh, Rodney’s got cancer. I shouldn’t ask him about it! But I’ll tell you: I’m sure that people imagine far more horrible things, if they don’t ask and don’t talk honestly with you—than anything I could tell them.

Then, if you want to help—step up and suggest something. Get specific. I know that people have different responses to this issue. From my own experience, I think it’s best when people who want to be good caregivers come up with real things they can do—and then offer to do these things, specifically.

Here’s an example: You can go up to a friend who needs help and you can say: “Hey, if there’s anything you need, just let me know.” And, yeah, that’s an OK expression of concern.

But I think it’s far better to say: “Can I make you dinner tomorrow night?” And then, “Is it OK if I make this for dinner?” Or, you could say: “Can I mow your lawn on Saturday?” Or, “Could my buddy and I come over and rake your leaves today?”

By offering specific suggestions, you’re telling the person what level of help you’re offering. You might hear back: “No, I really don’t need that.” Still, it gives that person who needs the help a good chance to say, “I don’t need that—but, I really could use this! How about doing this, instead?”

The real question is: Will we close ourselves off and back away from life and from other people? Will we become the patient in the bed? Will we give up our personalities? Or will we try, as best we can, to remain ourselves—and to help each other get through this.

To me, that’s attitude.

Lou Gehrig: The stricken hero was ‘The Luckiest Man …’

(Originally published June 29, 2014.)

By BENJAMIN PRATT

This week, Americans are remembering an inspiring moment that happened 75 years ago in New York City, when a man stricken with a disorder that eventually would kill him declared himself, “The Luckiest Man on the Face of the Earth.” As I am publishing this column, fresh news stories about this anniversary are popping up in newspapers nationwide—from the Wall Street Journal to Newsday.

Once rivals, on July 4, 1939, Babe Ruth enthusiastically hugged Lou Gehrig, who had announced he was dying and at the same time declared himself "The Luckiest Man."

Once rivals, on July 4, 1939, Babe Ruth enthusiastically hugged Lou Gehrig, who had announced he was dying and at the same time declared himself “The Luckiest Man.”

The man who made that declaration was Lou Gehrig, “The Iron Horse”—first baseman for the Yankees in the 1920s and 1930s, when baseball was by far the most popular sport in America. He earned his nickname for the strength and endurance he showed throughout his career. Gehrig played 2,130 games in a row from 1925 to 1939. He had a .340 career batting average with 493 home runs. He drove in more than 100 runs in 13 consecutive seasons.

In 1939, at age 36, everything changed for Lou Gehrig. In the spring he lacked energy, looked thinner and less confident at first base and in the batter’s box. His performance was so poor that he removed himself from the Yankee lineup. He went to the Mayo Clinic in Minnesota where he was diagnosed with amyotropic lateral sclerosis, or ALS, the rare, debilitating disease that attacks the body’s nervous system. It was eventually called Lou Gehrig’s disease. So Gehrig, one of our country’s most revered sportsmen, knew he would become more and more helpless.

That summer, Gehrig agreed to go public with his diagnosis. His fans clamored for a way to show their love for him. That groundswell led to the July 4, 1939, Lou Gehrig Appreciation Day and a special program between the first and second games of a double header. Gehrig was surrounded by his Yankee teammates, including his former rival Babe Ruth. They were joined by their friends once known as “Murderers’ Row”—for the ruthless power that Yankees lineup showed in the 1927 World Series. The festivities included the retirement of Gehrig’s Number 4.

When Gehrig himself stood before the microphones, he began:

“Fans, for the past two weeks you have been reading about the bad break I got. Yet today I consider myself the luckiest man on the face of the earth. I have been in ballparks for seventeen years and have never received anything but kindness and encouragement from you fans.”

Gehrig turned to thank his many friends in baseball, concluding: “Look at these grand men. Which of you wouldn’t consider it the highlight of his career just to associate with them for even one day? Sure, I’m lucky.”

But then Gehrig did something unusual. He talked about his family—the people who would become his circle of caregivers. He started by poking fun at his wife and mother-in-law: “When you have a wonderful mother-in-law who takes sides with you in squabbles with her own daughter—that’s something. When you have a father and a mother who work all their lives so that you can have an education and build your body—it’s a blessing. When you have a wife who has been a tower of strength and shown more courage than you dreamed existed—that’s the finest I know.”

He ended his brief talk this way: “I might have been given a bad break, but I’ve got an awful lot to live for. Thank you.”

The crowd applauded for two minutes!

Many friends rushed to offer Gehrig new roles that this great star might fill in his waning years. The only one Gehrig accepted was an appointment by New York Mayor Fiorello LaGuardia to serve in a special post granting parole to some of the city’s more deserving prisoners. Gehrig refused to allow any media coverage of his work, in this role, but he did pay many visits to correctional facilities to help prisoners who might deserve paroles.

He never complained. “Don’t think I am depressed or pessimistic about my condition,” he said at one point.

Then, just shy of two years after his Appreciation Day, on June 2, 1941, Gehrig was gone.

WHAT CAN WE LEARN FROM ‘THE LUCKIEST MAN’?

Benjamin Pratt cover Guide for CaregiversNo, none of us is Lou Gehrig. No one could be. But consider this …

When I was interviewing for my book, Guide For Caregivers, I constantly heard from caregivers about the remarkable people they were serving—and about the sense of purpose and courage they shared in facing tough odds. Many caregivers across our nation understand the kind of attitude Lou Gehrig expressed 75 years ago.

One of the most moving statements I heard, in my research, was from the father of his disabled son, who came home wounded from his military service. Here are just a few of that father’s words to me:

“Since my son got wounded I have often thought how I wish we could get our life back—you know, as it was—comfortable, simple, and familiar. And, I often felt angry or jealous, as well as guilty, for thinking I wanted my life back. …

“But, the unexpected just happens to us and we are coping. We are on the front line—in the trenches—all day—every day. This is our life … and our lives have to be lived as best we can. Our son was doing his job when that damn bomb went off. None of us will ever get back to the life we had.

“One thing feels pretty strange to me now—I’ve never felt more like I have a reason to stay alive than I do now.”

No, this proud father never called himself the world’s “luckiest man.” But I do know that he is deeply grateful and his life is full of purpose.

(Originally published at readthespirit.com, an on line magazine covering religion, spirituality, values and interfaith and cross-cultural issues.)

Tips for Caregivers: Keep Up vs. Catch Up

Let a SEAL be your guide: “Keep up!”

US Navy Seals face the waves

By BENJAMIN PRATT

U.S. Navy SEAL training is spiritually, intellectually and physically rigorous, rugged. SEALs have a saying about running, which they do as a group.

“It’s easier to keep up than to catch up.”

This succinct, crisp phrase captures wisdom relevant for our lives in so many ways. Students know that it is easier to keep up with their studies than to languish through a term and race to catch up at the time of finals. It is easier to exercise regularly than catch up after years as a couch potato; easier to keep our bodies at a proper weight than catch up with endless diets; easier to limit our spending by restrained buying than recover from mounting debt. It is vibrant, necessary advice that promises us success in our primary relationships, our finances, our health and our life goals.

It is a basic life guideline.

Living by this sage advice is of inestimable value for caregivers. We caregivers can become so focused on serving our beloved that we ignore caring for ourselves. We isolate ourselves and do not run in a group as the SEALs do, thus making us vulnerable to a life of forever struggling to catch up.

We must care for ourselves by engaging in relationships where we can share our story, feel nurtured, experience the comfort and compassion of others while we extend the same to our care recipient. It is vital that we keep up with good food and adequate sleep and exercise to sustain body and soul. Our well-being requires soul-nurturing with humor, song, poetry, gratitude, prayer, manual labor and frequent respites.

Be a wise self-caregiver by running in community.

Don’t attempt the job alone.

Practice the good advice of the SEALs: “It’s easier to keep up than to catch up.”

Please, share this column with friends! Add Comments with your own tips.

Thanks go to Shane T. McCoy for today’s photo of US Navy Seals. He released it for public use via Wikimedia Commons.

Simple Gifts: Seeing opportunities to humbly help

Simple Gratitude for Simple Gifts

By BENJAMIN PRATT

I.
A Praying Mantis in the wildHe is old
uses a cane
bent over and slow
takes all he has to climb into the city bus
Takes the only seat left
Others fill the aisle—hanging from the loops
The bus jerks forward
He searches each pocket, jacket, pants, and shirt
His nose is running, now dripping—
but nothing to wipe it
Across the crowded aisle, I reach into my pocket
where I always carry napkins
I slide some toward him
across the aisle
between the legs of standers
He takes the napkins
wipes his nose—never looks my way
I know he’s grateful
if a bit ashamed
I know because I’ve been there.

II.
How she managed two shopping carts
we do not know
She loads the rear of her SUV
with food and drinks
Stuffs her small child in his car seat
Ready to go?
No!
Two carts to return with:
Child waiting. Car unlocked. Groceries piled.
My wife sees her predicament
“I’ll take your carts back.”
“Oh, thank you. Thank you!”
Relief
As she drives away,
she rolls down her window:
“Oh, thank you. Thank you!”

III.
She is hanging upside down
inside the window screen
She looks puzzled, trapped, chagrined—
her ET-like eyes
overwhelming her small head
bobbing on her long, slender, mint-green body
I’m certain she is a she—
her regal head contentedly nodding,
despite her obvious predicament
I slip a cupped white paper under her
The queen slowly steps forward
entering her carriage
“Welcome Madame.”
She is deferential to her new footman
I escort her outside
where she slowly exits her carriage
onto an hydrangea leaf
She pauses as she turns
and with the slightest nod of her head
she acknowledges her new footman.

.

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The Rev. Dr. Benjamin Pratt is a noted expert on compassionate care and is the author of Guide for Caregivers.