Face It, Mom and Dad: I’m Not Special

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I come from a polite Midwestern family. We never argue. We acknowledge each other’s viewpoint and honor each other’s truth. But to the pantheon of complaints children lodge against their parents (affairs, abandonment, forgotten birthdays), I’m adding this: unbridled optimism. My parents believe in the power of positive thinking.

Some fathers sing in the shower; mine recited his desired salary. While managing other people’s companies, he tried to sell a screenplay, build websites and write self-help books. One year he declared he would write three best sellers. I gently suggested he try writing a single chapter.

My mother directed programming for senior citizens, but she planned to launch her own greeting card line and publish children’s books based on the family pets. When she started a business making men’s belts, she thought her design might sweep the nation, so she pursued a patent. Now they have 400 belts sitting in the basement.

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Maybe it’s silly for me to bash optimism. After all, my parents’ optimism enabled me to take risks and led to many successes in my life. “Someone has to get the job,” my mother always said, and on occasion that person was me. “Someone has to win the contest,” she would say. “Why not you?”

Raised on Stephen Covey (“The 7 Habits of Highly Effective People”) and “The Secret,” I thought anything was possible: Becoming a child star, finding true love, even finishing “Ulysses.”

Then, when I was 26 and in my first year of graduate school in Seattle, I couldn’t stop coughing.

My parents owned a book called “You Can Heal Your Life” by Louise Hay, along with a matching set of affirmation cards, which my mother kept in her nightstand. Hay claims all illness results from fear and anger.

I went to the library and checked it out, wondering: What am I afraid of?

Confident I could solve the problem with mind power, I visualized myself as healthy. I listened to a CD called “Sound Healing” and had heart-to-hearts with my cough: “Thanks for everything you’ve taught me, but you can go now.”

For two years, doctors searched for an answer. They gave me antibiotics, inhalers and acid reflux pills. They sent me to a speech pathologist. They prescribed a nonnarcotic painkiller that was supposed to interact with the part of my brain telling my body to cough, but it was like taking a sugar pill. When I coughed up blood, they suspected tuberculosis.

Finally, after a CT scan of my lungs, I got my answer: cystic fibrosis, an incurable lung disease I’d unknowingly had since birth.

When I pressed a doctor for a prognosis about whether or not I’d live a full life, she reluctantly told me I could live another 30 years. Meaning I’d die around 60.

My future shifted beneath me like a tectonic plate.

At first, I didn’t make a big deal about my disease because I didn’t want to scare my parents. As I learned more about it, though, I began to think they weren’t scared enough. My parents were like balloons that wouldn’t pop.

“There’ll be a cure,” my mother told me over the phone. Because we no longer lived in the same state, almost all our conversations now happened over the phone.

“You don’t know that,” I said.

“Yes, I do.”

To get my parents to face reality, I quoted passages from a book about cystic fibrosis that said 85 percent of patients eventually acquire the Pseudomonas bacteria, which leads to a significant decline in lung function.

“But maybe you’ll be the 15 percent who doesn’t get it,” my father said.

“Why worry about something that hasn’t happened yet?” my mother said.

Their optimism wasn’t inspiring. It was annoying. When I couldn’t get a job after graduate school, my mother said, “Why don’t you ask the universe for a job?”

“The universe gave me CF,” I said.

“Was it better not knowing,” she said, “or is it better knowing?”

My parents didn’t seem to want to acknowledge that I had a life-threatening illness. That I was bitter and cynical. That I was no longer on speaking terms with the so-called universe.

On Christmas Day, they flew to Seattle from Chicago to visit me. This was the first holiday they had spent away from their home. They brought sugar cookies, a Giordano’s pizza, and two self-help books: “The Resiliency Advantage: Master Change, Thrive Under Pressure, and Bounce Back From Setbacks” and “The Resilience Factor: 7 Keys to Finding Your Inner Strength and Overcoming Life’s Hurdles.”

I thanked them for the books, and later, while they slept on a half-deflated mattress in my living room, I leafed through the pages, skimming headlines: “The Power of Positive Expectations” and “How Resilient Are You?”

I realized I didn’t have to read these books. If someone gives me a bracelet, and I don’t wear bracelets, I keep it in a drawer for a few days, then throw it out with a tinge of guilt. But these were my parents’ books, my parents’ beliefs, and throwing them away wasn’t so easy. I didn’t know how to disagree and still be a family.

The next day, we visited my social worker for a joint session. I told my parents it’s O.K. not to be positive all the time. It’s O.K. to feel something. We do feel things, they said. We feel devastated, but we don’t want you to see that. I asked why.

“If we had a son,” my father said, “and he was a really good baseball player, and for some reason he had to have his arm amputated, we wouldn’t focus on the fact that his arm is gone. We would tell him about all the stuff he could still do.”

“But you’d be sad about it,” I said. “Wouldn’t you?”

“Of course, we’d feel sad, but your mom and I would talk about it and decide what to do, and I think we would take a positive approach because that’s what’s best for our child — focusing on what’s good.”

“But he lost his arm!”

“We just want you to have hope,” he said. He turned to the social worker. “I guess you just want to protect your kids.” His eyes were getting a little red, and it was hard for me to see him like that. It was even harder for him to have me see him like that. I didn’t recognize it until later, but that moment was courage. I have never seen my parents cry.

Along with blood ties, it’s your shared beliefs that make you a family. My parents believed in me. I didn’t know how to convince them that their version of me wasn’t real. That I wasn’t special. That cystic fibrosis wouldn’t be cured simply because I had the disease.

For a year, I worked to find words that would pierce my parents’ shield. I wrote the words on a pad of paper I kept in my purse; I was waiting for the right moment. It came as I walked home from my temp job. That’s when my mother recommended a faith healer. I fiddled with my umbrella, struggling to hold the phone and get out my notebook at the same time, but I didn’t need to look at it — I’d memorized the words.

“Why is the present moment never good enough? Why do things always have to be better? Why can’t you accept how things are now?”

She didn’t respond.

“If I died, and your parents came by a month later and gave you books about resilience and said, ‘Our biggest fear is you’ll never be happy again,’ how would you feel?”

There was a long pause. “I would feel alone,” she said.

Months later, in an act not of defeat but of love, my mother threw away her affirmation cards. They had said things like: “All is well in my world” and “I am safe” and “Everything is working out for my highest good.” Colorful and comforting, full of moons and stars, her treasured cards were now in the trash, with moldy fruit and remnants from a tuna can.

Had I done the right thing?

My parents couldn’t see it, but I did have hope. Out of love for them, I carried around that pad of paper. Out of love for them, I told it like it was.

Most of the time, I won’t get the job. I’ll lose the contest. I am one of seven billion people on the planet. We are all special and ordinary, essential and not, but my parents don’t see it that way. I’m their daughter, and they can’t help but expect the best for me. And in some ways their wishes came true. Thanks to new medications, my prognosis is excellent.

It’s been years since that session with the social worker, years since my mother threw her cards in the trash. Nearly 18 months ago, I became a mother myself, and I have been able to learn firsthand how, for parents, to love is to hope. No books or affirmations required.

Jenny Dolan is a Ph.D. student in the American Studies program at Brown University.

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