A Christmas Carol

Merry Christmas to all!

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

God Bless Us Everyone… with Hemophilia

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.

The ghost of Jacob Marley warns his former partner Ebenezar Scrooge that unless he changes his greedy, callous ways, he also will carry with him the chains he forged in life, for all eternity.

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.

A Haunting, a Murder, Secrets and VWD

All Hallows’ Eve, or as we call it tonight, Halloween, is the perfect time to share a novel about a haunting, a murder, secrets and von Willebrand disease!

Cassandra “Cassie” Mitchell is divorced and in her late 30s. She lives in her family’s home, called The Bluffs. Cassie’s great-grandparents built the Victorian house located in Whale Rock Village on Cape Cod, Massachusetts. And Massachusetts has its share of haunted house stories! The Bluffs is haunted, and the spirits there making their presence felt by emitting odors, scents or aromas – acrid or pungent like burning sugar when displeased, or sweet like caramel when approving.

Cassie and her older sister Zoe deal with the Mitchell “family curse,” in which the women suffer from miscarriages and stillbirths, just like their mother did. But they don’t know what causes this curse.

Cassie is engaged to Daniel Benjamin, 45, a retired FBI agent from Boston. But they must postpone the wedding after Hurricane Chantal strikes—the storm becomes a metaphor for ripping the lid off things, especially family secrets. One day Cassie discovers a dead body rolled up in a rug inside a dumpster. Simultaneously, Benjamin assists local police after a 3-year-old boy goes missing. Strangely and coincidentally, a drowned boy washed ashore in 1969 and was found by Cassie’s father. He is called The Barnacle Boy and, as a local legend, is buried in the Mitchell family plot. The grave is visited by a mystery woman who Cassie tries to track down.

Besides the suspicious behavior of the missing boy’s parents, another suspect, Christopher Savage, stays in the carriage house at The Bluffs after the storm. Christopher, who professes his innocence, is friendly with the missing boy’s older brother, who won’t talk to the police. Christopher is a prep school history teacher in New York with a questionable past.

Eventually, the police, with some insight by Cassie, learn of multiple interconnected lives. Three orphaned Italian children moved to Boston to live with relatives in the early 1960s. One, Renata, became a nanny to the Welles family, and later pregnant from the eldest Welles son. Never informing them of the child, Renata left employment for the Welles family, to raise her son, Antonio. Mrs. Welles realizes the connection that, due to their nosebleeds, both her son and Antonio had Type I von Willebrand disease.

Here’s the big connection: To keep Antonio from the Welles, Renata let her brother take him by boat to New York to start over, but Antonio fell overboard during the storm in 1969. He was the Barnacle Boy! Renata became Renee after moving to New York, where she married and had another son named Christopher Savage. Renee never informed her new family of her past before she died of cancer. Yet her sister Isabella locates both her nephews: Antonio’s grave, and Christopher in person, who she had never met before, on Cape Cod. Both nephews, when children, had been given St. Christopher medallions, a clue that confirms their family connection.

Two weeks after the storm, Cassie and Benjamin, along with the police, discover the true cause of death for the victim in the dumpster – an accident that was covered up – and the reason the young boy was hid by his older brother during the storm. A month after the storm, Cassie sees a genetic specialist who finds a genetic abnormality that explains the Mitchell family curse—though not von Willebrand disease? The novel never reveals what it was. Still, Cassie becomes pregnant, pleasing the spirits! And there’s nothing like good spirits.

The book gets 70% 5 stars on Amazon.

Loretta Marion, 2019, Storm of Secrets: A Haunted Bluffs Mystery. New York, NY: Crooked Lane Books. 327 pages.

Remembering Our Veterans

Today is Memorial Day in the US, when we remember those who gave their lives in service of their country. I had an uncle, Jim Morrow, who died in Vietnam, on October 15, 1967. His name is inscribed on the Vietnam Memorial wall in Washington DC. Those we remember are those who willingly joined the service as career veterans, or were called to active service in a time of war.

I often think of our bleeding disorder community on Memorial Day. We were at war at one time, from the late 1970s through the 1980s, fighting the scourge of HIV. My son with hemophilia was born in 1987, at the height of the HIV battle. The Ray brothers had just been bombed out of their home in Florida. Our “soldiers” were gathering for a battle against pharma and the US government, to hold them accountable for the contamination of our nation’s blood supply. It was a scary time, especially for a new parent. I attended my first NHF meeting in 1992, and witnessed so much hostility and anger, directed at the displays by pharma, and at each other. Some of our community members were taking a legal approach, hoping for compensation through negotiation; others wanted a more militant approach to solving the accountability problem. So many had died. So many.

I was on the “other” side; my baby had escaped the dreaded HIV infection by only a year or two. When I met these leaders and soldiers in the community, I was struck by their dedication, knowledge and courage. Some were dying already, but fought the good fight to win compensation for all. That would be our only freedom. They were victims of this insidious infection, but became soldiers to defend us, the ones who barely escaped. Their efforts ensured a safer future for all.

Many of those soldiers have died now, but I still remember them. I feel honored to have known them. And I always appreciate how by fate, my child escaped their fate by mere months. I keep photos of some of them on a shelf at home, and have for the past 20 years. Names like Michael Davon and Tom Fahey, co-founders of the Committee of Ten Thousand (COTT); Dave Madeiros, a visionary leader who sought to provide funds to the community by owning a specialty pharmacy—his insights into insurance changes and prophecy about managed care and restrictions all came true.

And some photos are of patients who died, who inspire me all the time. It’s important we remember them all, and carry on their legacy. We are of a new generation now, and our community may be forgetting these veterans.

How can you get to know them and remember them? Read And the Band Played On (also an HBO movie). Watch the movie “Bad Blood: A Cautionary Tale.” Buy the book Dying in Vein. If you have hemophilia, or a child with it, knowing your community history is every bit as important as knowing American history this Memorial Day.

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

 

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

 

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