Laurie Kelley

The Hemophiliac’s Motorcycle

Laurie Kelley April 21, 2024

April is National Poetry Month, and it’s time to recognize one of the bleeding disorder community’s top poets: Tom Andrews. Tom passed away in 2001, at age 40, of complications of a blood disease, but also had hemophilia. His poetry reflected the pain he often felt due to his disorder—he won several awards for his poetry.

Tom grew up in Charleston, West Virginia, and seemed destined for fame. He was recognized in the Guinness World Book of Records for clapping for fourteen hours and thirty-one minutes—at age 11! He wanted to be a stand-up comedian. And he raced in motocross as a teen, but that ended wjhen he learned he had hemophilia following an accident.

He was a man of many talents: comedian, daredevil, copy editor for Mathematical Review, a journal for mathematicians, physicists, statisticians, etc. Talk about right brain and left brain!

But he is best remembered for his poetry. I had the deep pleasure of meeting Tom, and sharing correspondence with him for a time.  He sent me several copies of his work, include Codeine Diary: True Confessions of a Reckless Hemophiliac (Little, Brown, 1998), a memoir.  

In an online bio of Tom, his work is described here: “In this second wise and passionate book, Tom Andrews explores illness as a major theme, avoiding sentimentality without being merely confessional. He advances his considerable talent with great strength and forcefulness. The poems are buoyant with humor and mindful of larger mysteries even as they investigate very personal issues. There is an urgency that is compelling; the work is immersed in the private grief of the speaker without excluding the reader. There is real and hard-won wisdom and intelligence in the poems, offering genuine surprises and delight; their attractive humility is not a pose.”*

A man who knew suffering, but was not afraid to embrace the world, and reveal his soul. Isn’t thay the essence of beautiful poetry?

Here is an exceprt from The Hemophiliac’s Motorcycle:

… may [the Lord] adore each moment alive in the whirring world,

As now sitting up in this hospital bed brings a bright gladness of the human body, membrane of web and dew

I want to hymn and bide by, splendor of tissue, splendor of cartilage and bone,

Splendor of tail-like spine’s desire to stretch as it fills with blood

After a mundane backward plunge on an iced sidewalk in Ann Arbor,

Splendor of fibrinogen and cryoprecipitate, loosening the blood pooled in the stiffened joints

So I can sit up, of sit up in radiance, like speech after eight weeks of silence,

And listen for Him in the blood-rush and clairvoyance of the healing body…

It’s National Poetry Month. Read some. It’s good for your mind and soul!

*https://uipress.uiowa.edu/books/hemophiliacs-motorcycle

World Hemophilia Day

Laurie Kelley April 14, 2024

April 17 is the birth day of Frank Schnabel, a California businessman who, over 60 years ago, founded the World Federation of Hemophilia (WFH). All across the globe on April 17, the hemophilia community celebrates unity, that we are one family united by a protein deficiency that causes prolonged bleeding and suffering. It’s called “World Hemophilia Day.” The theme of this year’s day is “Equitable Access for All.”

We are divided only in access to treatment. Up to 75% of the hemophilia global community has no access to factor. We are trying to close the “gap,” as the WFH puts it, by donating factor medicine to those in need.

Help continue to unite the world hemophilia community. Donate unused or unwanted in-date factor to Project SHARE, and the rest to me! We will find a good home for it overseas. Sponsor a child with hemophilia in poverty through Save One Life. Give back to those in need, and to honor those who have gone before us.

St. Patrick’s Day, Snakes and Hemophilia

Laurie Kelley March 17, 2024

Snakes show up in Irish history for one important reason: legend has it that St. Patrick (who was not a legend but a real person) banished snakes from the island. It’s a myth but in keeping with the idea of snakes as evil.

Snakes do get a bad rap, starting with Genesis in the Bible—he’s the Devil in disguise, and encourages Adam and Eve to disobey God and eat fruit from the tree of wisdom, and we all know how that went. That theme is continued in Exodus, when Moses and his brother Aaron use their staffs in a competition with Pharaoh’s magicians. They each turn their staffs into snakes, and Aaron wins when his snake devours the others.

Staffs and snakes go together importantly in medical history—for healing. In fact, the use of snakes as a medical image dates back to 1400 BC. The Caduceus is a symbol of Hermes (Greek) or Mercury (Roman) in mythology. The Caduceus is a short staff entwined by two serpents, sometimes surmounted by wings. Mercury was the god of speed—that’s why our planet with the shortest (think fastest) orbit around the sun is named Mercury. It only takes the planet 88 days to orbit, compared to earth’s 365 days.

The Rod of Asclepius belongs to Aesculapius, the Greek god of healing. The American Medical Association started using the staff of Aesculapius as its symbol in 1910. The Royal Army Medical Corp, French Military Service, and other medical organizations had done the same. Even today organizations like the World Health Organization use the staff of Aesculapius in them. 

You may even find it or the Caduceus on your child’s medic alert bracelet. It’s a universal symbol of a medical condition. And the funny thing is, certain snake venom has been shown to clot blood in some cases!

Happy St. Patrick’s Day, even if you are not Irish, and make sure to wear a medical ID when celebrating—and every day.

A welcome visitor in my backyard
https://ashpublications.org/blood/article/9/12/1185/7359/The-Clotting-Action-of-Russell-Viper-Venom

An Irish Genealogy of Hemophilia—and a Mystery

Laurie Kelley March 11, 2024

With St. Patrick’s Day coming up, I thought it would be interesting to look at an Irish tale involving hemophilia. From our archivist and researcher from North Carolina, Richard Atwood: “Ghosts of the Missing (2020) is a cold case missing person mystery that accurately portrays hemophilia, then weaves it into the multigenerational story of missing girls and their ghosts. The author, Kathleen Donohoe, who serves on the board of Irish Americans Writers & Artists, lives in Brooklyn, New York.” From Amazon: In the vein of The Lovely Bones and The Little Friend, Ghosts of the Missing follows the mysterious disappearance of a twelve-year-old girl during a town parade and the reverberations of this tragedy throughout the town.

William Moye builds his foundry in the Hudson River Valley in what will become Culleton, New York. Irish-Catholic immigrants work in the foundry, which specializes in creating bells. The workers live in the shantytown called Cullytown. Helen Dunleavy, age 16 with green eyes, arrives in 1856 to work in the Moye household. She comes from Ballyineen (or Daughtertown) in Galway, Ireland. Dunleavy women are healers: they have the ability to cure. The women are also cursed: girls live, while the boys die in infancy. Helen brings to America the cure and the curse, or broken gene (later identified as factor VIII deficiency or hemophilia A). Her son dies, while her twin daughters, named Clara and Lucy, live. Clara does not have the gene. Lucy has it and passes it on.

Cassius Moye, the son of William, is born in 1843. He is captured during the Civil War, and develops tuberculosis. When he returns home, he writes The Lost Girl and Other Stories. His cousin Augustus runs the foundry. At his death in 1884, Cassius passes the Moye House to his publisher, who eventually sells it to Marjorie Moye Pearse, a descendant of Augustus, in 1946. The Moye House Writers’ Colony is established in 1953 to be located in the house where Cassius Moye was born. Culleton holds a Lost Girl celebration every October 27. Cecilia Burke, a descendant of Lucy Dunleavy, marries Daragh McCrohan and has two sons, Michan and Cathal. Both sons have hemophilia. Their factor VIII is a miracle treatment: it saved them before it killed them. “Factor VIII was a blood product manufactured as a powdered concentrate that caused blood to clot.” (p. 79). Michan, born in 1967, is spared HIV due to immunity or resistance, but acquires Hepatitis C. He becomes a poet and a professor at Gilbride College.

As a bachelor, Michan takes up residence in Moye House and publishes Lost Girls: An Anthology of Stories Written at Moye House Writers’ Colony. Cathal and his wife Lissa acquire HIV and die of AIDS, while their daughter Adair develops AIDS. Michan brings the orphan Adair, then 11, to Moye House in 1994. Rowan Kinnane is a fifth cousin of Adair McCrohan (Helen Dunleavy is four times great grandmother to both girls). Rowan, a descendant of Clara Dunleavy, befriends Adair, who is shunned at school for having AIDS. On October 28, 1995, Rowan, aged 12, disappears under suspicious circumstances. The police never solve her case.

Adair starts HAART treatment, an antiviral cocktail, in 1996. Adair experiences visions of Rowan. In 2010 while living in Brooklyn, she stops taking her medicines to be hospitalized with pneumonia. She returns to Moye House under the care of Michan, once again. Ciaran Riordan, a stepbrother of Rowan living in Ballyineen, Ireland, enrolls in the Moye House Writers’ Colony to research missing children, including Rowan. Both Adair and Ciaran investigate the disappearance of Rowan by eliminating suspects and finding clues associated with the rowan tree, or quicken tree, located next to the Rosary Chapel and a book of magic called A Charm for Lasting Love: Spells and Cures from Ireland, that includes a cure for the chronically ill.

Adair McCrohan explains hemophilia: “Culleton had known for a century that my family was cursed. Boys die. Girls live. At least this was how they put it before the disease was called by its proper name: hemophilia. From the Greek: haima = blood + philia = to love. Though ‘to love’ in this context is interpreted as “tendency to.” The blood doesn’t clot properly. Tendency to bleed. Women are carriers. Their sons get the disease but their daughters don’t.”

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