Applying a little Irish humor to the daily struggles of rare disease

Pulitzer Prize-winning author Frank McCourt once said of his fellow Irishmen, “I think there’s something about the Irish experience — that we had to have a sense of humor or die.”

The tragic nature of Irish history certainly tested the ability of the Irish to maintain any sense of humor. Yet Irish humor, with its darkness and dry nature, is world famous. As a result of the genocide known as the Great Famine, some 2 million people emigrated from Ireland over a 10-year period in the mid-19th century. Today, their 100 million descendants carry Irish humor worldwide.

Why am I writing about this? I intended to write a column for St. Patrick’s Day. My family has never been fans of “Kiss Me, I’m Irish” T-shirts, green beer, and the like. We’ve always celebrated a family dinner of boiled corned beef and Irish soda bread. And, of course, Guinness and good whiskey. But while I couldn’t be with them this year, I celebrated in Texas with friends.

Yet something kept nagging me. A little voice said, “You need to talk about St. Patrick’s Day.” Then it became clear: What I wanted to say about it wasn’t limited to March 17. As a matter of fact, when I finished my research for this column, I was surprised to learn how much the Irish experience and the rare disease experience have in common.

Recommended Reading

January 16, 2023 Columns by Shawna Barnes

How Traffic Lights Can Help Explain Energy Levels With MG

How Grampa Russell did it

On May 23, 1913, John Russell, my maternal grandfather, arrived in Boston. He left home in Ireland to join his brothers and sisters in the United States. John never completed high school. He grew up on a farm, and his only skills came from his enormous physical strength.

When he arrived in Boston, he found a job working for Standard Oil, a company he worked for until his retirement. He never lost his job during the Great Depression, and he built a financial foundation that would have been impossible in the Old Country.

When he died in 1976, he left behind a wife of more than 52 years, five children, 16 grandchildren, and one great-grandchild. Not bad for a man who began life in crushing poverty.

As we’ve aged, many in the family — all of us are still very close — have wondered how Grampa Russell did this. It became clear to me that relationships and humor were the bricks and mortar that Grampa used as the foundation for his new life. An old Irish proverb certainly applied: “It is in the shelter of each other that the people live.”

Known for his garrulousness, he was always out walking, and it was common to see him around town talking with his many friends and even complete strangers. “John! Don’t talk to everyone. They don’t want to hear it,” my grandmother would say. He never followed that advice.

Like all the Irish, Grampa loved jokes. This humor was typified in one of his favorites: “Old man Murphy and old man Sean were contemplating life when Murphy asked, ‘If you had to get one or the other, would you instead get Parkinson’s or Alzheimer’s?’ ‘Sure, I’d rather have Parkinson’s,’ replied Sean, ‘ ’tis better to spill a couple of ounces of Jameson whiskey than to forget where you keep the bottle!’”

The best medicine

I want to encourage all of us in the rare disease community — Irish or otherwise — to celebrate all of March in honor of St. Patrick and the Irish. May I suggest that we focus less energy on green beer and tacky shirts and hats and instead find the humor and sunshine in every day?

We recently marked Rare Disease Day on Feb. 28. I think it’s a wonderful remembrance. But without taking away from this wonderful happening, I live in a world where every day is Rare Disease Day. While I find inspiration in this day, it isn’t what I need. I require what my grandfather had: I need resilience and humor.

Writing in the Lake Oswego Review, Roy Houston said of the Irish condition: “The historical narratives of the time observed a population living in squalor, in mud huts, bare footed, clothed in rags, and living on a diet of potatoes and buttermilk. It seems an awful standard of living. However, the narrative went on to say that they were the happiest, most contented people, who spent most of their time laughing and having fun.”

I don’t ever want to make light of the sadness and horror of the Great Famine. I know that my grandfather’s story lacked the difficulties and prejudice many of his countrymen encountered. As Houston wrote, “From this difficult life, the Irish were never afraid to stand up for what they believed and if there was a fight, they were good at that too — they never gave up.” All of us in the rare disease community can never give up. No matter how bleak things may seem, we must go on.

Those who come after us are depending on us. May they say of us what I’ve said about my grandfather: “He ran the race, he fought the good fight, he kept the faith.” Have a wonderful end of St. Patrick’s month. Try to find something humorous in each day.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.