It was Mary Pierce’s 40th birthday. As she stood in her kitchen that day, her phone rang. It was not a call from a friend to wish her well, but news from her doctor that would change her life.
“I was right,” he said. You have this thing called Alpha-1 Antitrypsin Deficiency. It’s inherited.
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For years Mary had been struggling with shortness of breath, repeated lung infections, severe, unexplained weight loss, and a major decrease in her tolerance for physical activity. All the time she was blaming herself. “When I started getting symptoms, mainly the weight loss and shortness of breath, I thought, “You dummy, you’ve got to stop this. No doctor’s going to be able to do anything for you until you quit smoking.”
She flashed back to the time when a friend came to visit from California. It was this friend’s idea to go play tennis. After running for just three balls Mary was in trouble.
She thought, “Hey, what’s going on here? I can’t breathe!”
But at that point she could not admit to herself that she was having difficulty breathing, let alone admit it to her friend. “I faked it and said, ‘It’s really too hot. Let’s not play.’”
Her reason for not playing tennis that day was the first in a long line of excuses she felt she must make for why she could not do what healthy people usually find easy.
Over the next ten years Mary tried to quit smoking. She took several stop smoking classes, and although she cut down to around a half a pack per day, she continued to smoke. But her breathing wasn’t getting any better. As the years went by, Mary was still losing weight and hiding her increasing shortness of breath from her family, friends, and co-workers. “I was doing everything I could to pretend that it was okay.”
Through living with limitations brought on by decreasing lung function, bearing the guilt of smoking and not being able to quit, carrying the shame of denial that she was damaging her lungs – compounded by the burden of hiding it all – Mary silently kept her own counsel.
“I’ve got to quit smoking. Nothing’s going to happen until I stop smoking. I just took all the responsibility. I’m a good Catholic girl. I took all the guilt on myself. I said to myself, ‘Don’t expect anybody else to help. I’ve got to do it my own dumb self. My smoking is doing it.’ So that’s how I rationalized it.”
Mary’s dad died of emphysema and her mom of lung cancer and emphysema. Her husband’s father had also died of lung cancer and emphysema. Both Mary’s parents had smoked cigarettes. She recalls aunts and uncles coming over to play cards and the house being full of cigarette smoke. She herself started smoking at about age 13, sneaking cigarettes. So you might think that it was, indeed, all her fault. But not so.
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