On hard days with MG, family nicknames can remind us who we are

Before I was diagnosed with myasthenia gravis (MG) and neurologists started timing how long I could hold my arms in the air, I had another name altogether. To my family, I was never really Mark. I was Boo, a shortened form of Booza.

Usually, we don’t choose our nicknames. Somehow, that seems to be the point. They are a form of communication, expressions of love. Sometimes, like when a student isn’t crazy about their teacher, these nicknames express something less positive. Trust me. I know from whence I speak.

MG has a way of taking titles away from you. I spent nearly 30 years being “Mr. Harrington” to a few thousand inner-city kids before this disease decided otherwise. I abruptly lost that name the way you lose a job. But nobody can take Boo away. Nobody voted on it; nobody can remove it. And as far as I can tell, nobody alive remembers exactly how it started.

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That’s the thing about nicknames in my family: They’re not earned. Like a knighthood, they’re bestowed. In the Harrington family, it was my Aunt Mildred who ran what amounted to a one-woman naming bureau from her home outside Boston. For the latter part of the 20th century, she was the keeper of the flame, the bestower of names.

My cousin Richard inherited the mantle of “keeper of the family treasures.” I recently asked him to write down everything he could remember of our family’s patois. What came back was a small, private dialect.

My father, known elsewhere as “Beama,” shows up in Richard’s record as “Martha and Buster.” Old Aunt Mildred, not the bestower of names, was “Wisha,” and her husband was “Fancy.” The list is lengthy. Among the gems are Moona, Goose, Agony, and Spags. Bestower of titles Aunt Millie answered to both “Meem” and “Emmy.” I have a brother, Jackaboos, and a sister, Ann MeMe. And on and on.

Space limits my ability to share our private vocabulary. If you know what pins, pups, and Jehovana are, you have a head start on those who don’t speak Harringtonese. I love this private language. The etymology of most of it has faded into obscurity, while the love it expresses remains.

‘An identity marker’

Nicknames are a small intimacy that doesn’t translate outside the front door. They’re closer to liturgy than science or reason. Names such as “Wisha” or “Ploon Boonie” aren’t useful information. They don’t tell you a thing about the person’s job, their accomplishments, or what they’re capable of carrying, fixing, or surviving.

They tell you that someone once looked at them and loved them enough to call them something ridiculous. Author Nicola Yoon wrote, “Names are powerful things. They act as an identity marker and a kind of map, locating you in time and geography. More than that, they can be a compass.”

The silliest ones locate us best. My résumé lists degrees in history, French, and theology. It doesn’t tell you who I am to the people who matter most. “Boo” does.

There’s a verse in Isaiah I return to more than most, especially on the harder days, when MG has a way of making me feel like a list of symptoms instead of a person: “I have redeemed thee, I have called thee by thy name; thou art mine.” I don’t think it’s an accident that the promise isn’t “by thy title” or “by thy diagnosis.” It’s by name. The specific, unrepeatable, slightly absurd name that only the people who love you would ever think to use.

When you live with a rare disease, it is easy to think of yourself as a patient, a case study, a burden, someone whose good days are behind them. Reminding ourselves that we are more than this is important. Nicknames do this. They grab us by the neck and say, “Hey, you’re more than this. You’re someone who is loved and seen for more than symptoms or medications.”

I’ll leave you with this: Somewhere, right now, there’s a cousin still answering to “Goosa” without a second thought, a sister who will always be Ann MeMe, and a brother who’ll always be Jackaboos.

In the conclusion of Thomas Mann’s novel “Buddenbrooks,” as the family sadly reminisces about deceased loved ones, a withered old woman stands up and tells the others that the day will come when the family will be together again. It may not be rational, as it goes against reason, but she believes it with her entire being. Buster, Spags, Uncle Shady, and English Annie most likely are helping Meems assign names. When we cross over, they’ll be waiting for us.

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.