A Christmas Carol

Lessons from Rudolph

Laurie Kelley December 17, 2023

We just finished putting up and decorating the Christmas tree, and I was surprised to see so many ornaments about Rudolph! It seems I’ve been collecting them through the years. I grew up in the 1960s, and before CGI, “Rudolph the Red-Nosed Reindeer” was the best TV holiday show for kids, in my opinion.* In many ways, it still is. Stop-motion animation has always fascinated me. Apparently, it also fascinated a guy my age by the name of Tim Burton, who, adoring “Rudolph” and how it was made, grew up and fulfilled his dream. He went on to create the classics “The Nightmare Before Christmas” and “The Corpse Bride”!

This got me thinking…

Christmas is a time to celebrate the birth of Christ and all it entails: gift-giving (mimicking the gifts from the Three Wise Men), charity, peace, family, love.

But in art, it seems to be a time to recognize that marginalized people, especially those with disabilities, should have special attention and care.

Think of Tiny Tim, who I’ve written about before. Birthed from Charles Dickens’ fertile imagination, born in Victorian England, he was crippled at a young age, and the entire story, “A Christmas Carol,” revolves around showing him love and compassion. The antagonist is his eventual benefactor—Scrooge. Despite his wealth, Scrooge was crippled too, emotionally. The story develops to show how Scrooge was cured of his antisocial pathology, and how Tiny Tim was cared for. I’m convinced Tiny Tim had hemophilia!

And what about Rudolph? The Rankin/Bass show had the narrator, a snowman voiced by Burl Ives, calling his shiny red nose a “nonconformity.” The show had a lot of great humor. Rudolph was different. He had a problem. But he had a bigger problem when his parents tried to disguise his nose, to make him like the other reindeer.

What a great story! Rudolph meets up with an elf, Herbie, who also doesn’t conform to society’s conventions. Together, they set out to see the world, and end up on the Island of Misfit Toys, where all the toys have some “disability,” which could simply be translated as, “doesn’t meet society’s definition of perfection.”

“We’re a couple of misfits”: Christmas is about accepting those who are marginalized

In the end, Rudolph convinces Santa to find homes for all the misfit toys. Tiny Tim helps Scrooge, who then helps Tiny Tim. And Rudolph, of course, saves Christmas! The moral of the stories is that different is good. And we all need to be understanding, tolerant, helpful and inclusive.

Even Herbie. He got a job as the North Pole’s first dentist.

Happy holidays!

* Rankin/Bass, as Videocraft International, contracted with Tokyo’s pioneering Tad Mochinaga for the stop-motion “Animagic” animation. Scripts, pre-recorded voices and sounds made their way to Japan, and an estimated 82 puppet figures were created.

Merry Christmas to all!

Laurie Kelley December 25, 2022

Christmas holiday banner with golden balls and spruce branches on dark background hannazasimova

God Bless Us Everyone… with Hemophilia

Laurie Kelley December 12, 2021

Doug and I saw a local live performance Friday night of Charles Dickens’ “A Christmas Carol.” It was wonderful! A classic story about a greedy old man who spends his whole life counting his money, living frugally and sharing his wealth with no one. The story is about his visit Christmas Eve by three ghosts: The Ghost of Christmas Past, Christmas Present and Christmas Future. Really four, if you include the ghost of Jacob Marley, his business partner in life, who first comes to warn him of the coming apparitions.

It’s a brillant story, and a metaphor for life. What is most important? Who do we most care about, and why? What will be our legacy when we die?

In the story, the Ghost of Christmas Present takes Scrooge to the house of his employee, the long-suffering Bob Cratchit, who has a son with a mysterious illness. The illness is never disclosed, but we see its symptoms: a crutch, crippling, limping, pain. And when shown the future, little “Tiny Tim” does not survive.

Every time I watch this now, I wonder: could Tiny Tim have had hemophilia?

It’s not far-fetched. In 1859, Tiny Tim inhabited London when Queen Victoria’s son Leopold did (born in 1853), and he had hemophilia. But Tim’s condition was never disclosed. He didn’t have a cough (denoting tuberculosis, common at the time), or any other pain.

I’m going to imagine he did have it; and thanks to Scrooge’s transformation to a benefactor, Tim got medical care, nutrition, support and grew up. Of course, they did not have commercial factor. But even Leopold lived to his early 30s without it.

*Tiny Tim narrates the story of A Christmas Carol at the North Shore Music Theater in Beverly, Massachusetts*

To those with hemophilia then and now, in the words of Tiny Tim, “God bless us, every one!” And happy holidays!

A Christmas Carol has never been out of print, and is one of the most enduring, powerful stories in English literature.

Home of Elvis… and the Ancient Greeks*: Pulse on the Road

Laurie Kelley June 10, 2012

Memphis Mayor A.C. Wharton

Pulse on the Road presented its program in the beautiful city of
Memphis. We were honored to be invited by the Tennessee Hemophilia and Bleeding
Disorder Foundation to their annual meeting, where over 300 family members
assembled to learn more about efforts to preserve hemophilia care. The meeting
opened on Saturday with a speech by Memphis Mayor A.C. Wharton, Jr., an
intelligent and charming gentleman, who pledged his support for the Foundation.
Mary Hord, executive director, then reviewed the incredible roster of programs
and activities provided by this successful and high-functioning NHF chapter. They
have over 1,000 families registered, something to be proud of in itself!

Laurie meets Rev. Shane Stanford

Then came a profound, humble, and at times very humorous recollection
of a personal and positive life. Speaker Rev. Shane Stanford is the pastor of a
church in Memphis, recently relocated from Florida, who has hemophilia and HIV.
I don’t want to give away his spectacular presentation, all done without a
single power point, but it is of a celebration of life over adversity. I don’t
think there was a dry eye in the room, although everyone kept saying they had allergies
or something, and a long line formed after his speech, so families could meet
this remarkable man in person. I had long wanted to meet him, based on a recommendation
of mutual friend Barry Haarde; mission accomplished, and we are all the richer
spiritually for having met Shane.

This morning we held Pulse on the Road after breakfast. Not easy to
digest (insurance that is), our material was absorbed and contemplated by a
rapt audience. We covered the ACA and what’s happening in Tennessee. Michelle
Rice presented the NHF Insurance Selector Tool (you can download it at www.hemophilia.org, which I highly
recommend) and everyone got busy comparing two hypothetical insurance plans to
see which one was better. Many participants praised the tool as essential in
learning to master personal insurance.

Michelle Rice, NHF, speaks as Kelly Fitzgerald, PSI, looks on

Kelly Fitzgerald covered the Affordable Care Act (ACA) and what to
watch out for coming in 2014. Then we held our Community Forum, in which audience
members could ask questions of our panel of experts, which included Catherine
Joyce, social worker at a local HTC.

It was a great weekend, with a fantastic foundation and its attentive
and friendly hemophilia family members. Thank you, Mary Hord and team, for a memorable
visit!

Social Worker Catherine Joyce answers a question

Using NHF’s Insurance Selector Tool

We do POTR for their future!

Laurie & Zoraida, LA Kelley Communications

The POTR Speakers

* “Once in a Lifetime” Talking Heads

Happy New Year With Prophy News

Laurie Kelley January 2, 2012

All is quiet on New Year’s Day here, with the warmest winter in history in the Northeast. My grass needs to be cut!

Here’s some good news to start the year off…. Baxter’s Advate has been FDA-approved for routine prophylaxis in both children and adults, the only factor product to be so licensed.

In a Phase IV prophylaxis study, funded by Baxter, researchers, led by Dr. Len Valentino of RUSH University, found that prophy on Advate reduced bleeding episodes from 44 to only 1 in a year: great news and findings.

From its press release, Baxter reports that “for the prophylaxis regimen to prevent or reduce frequency of bleeding episodes, Advate dosing of three to four times weekly (between 20 to 40 international units of factor VIII per kg body weight every other day) may be used. Alternatively, an every third day dosing regimen targeted to maintain FVIII through levels greater than or equal to one percent may be employed.”

Of course, most parents and patients know that prophy with many products has been around for a long time. But it’s important for the prescribing doctor to feel comfortable prescribing a product with FDA approval. It takes a long time and money to investigate these products and their treatments, so it’s a cause for celebration when a Phase IV study is complete.

And so is New Year! Wishing you all a great year!

Great Book I Just Read
Lucky Ears: The True Story of Ben Kuroki, World War II Hero

Written for young readers, you can easily polish this book off in 30 minutes, but the images will stay with you a lifetime. Ben Kuroki was born a Nebraska native, of Japanese descent, and suffered through challenges like the horrible Dust Bowl, the Great Depression, and poverty. But he was deemed “lucky” by his parents for the little dimples he had on his ears. He never experienced racism until he enlisted in WWII following the attack on Pearl Harbor. He had no sympathy for the country of his ancestors yet was suddenly treated as inferior. He finally was allowed to enlist, and became one of the most famous bombardiers in US history! He had more bombing runs than almost any one else, so great was his love for the US. Despite the racism, he became a US hero, and was honored by President George W. Bush. He escaped many close encounters with death, and you close the book marveling indeed at his luck, and his wonderful career and patriotism. Five/five stars!

And this makes 35 books I read this year, achieving my goal!