BALTIMORE — At first, Janet Miller knew only that she had scoliosis. And that was enough. Enough to explain why she always felt different. Why she had trouble learning to swim and ride a bike. Why she spent her 13th year in bed, after doctors operated on her spine and wrapped her in a cast that stretched from the top of her head down to one of her knees.
And it was the reason, she thought, that when she was a teenager, her mother told her, “Only someone kind would want to be with you.”
It was enough to make her want to retreat from the world during her high school and college years in Western Pennsylvania, averting eye contact and skipping social settings.
But in her early 20s, when she was living in Southern California and began to notice small bumps on her skin, doctors told her that there was something else: neurofibromatosis (NF), a condition that would cause tumors to develop throughout her body, mostly on the surface of her skin.
It was incurable and progressive. The tumors would get worse, overtaking more and more of her flesh as time went on.
She spent the next decade mostly in isolation, reading and studying others’ reaction to her. But slowly, she also developed some emotional armor — she would lead with her intelligence and, at every opportunity, deflect conversation from herself. She even hosted a talk show on public radio, where she could ask all the questions and the audience would never see her.
Janet moved through a series of government jobs, made a few friends and even developed the occasional romantic relationship. By her late 30s, she’d obtained a master’s in public health administration and moved to Baltimore to work at the Centers for Medicare & Medicaid Services. But she’d given up hope of having a family, because doctors told her not to risk passing on the disease, and whenever she dated, she found ways to prevent her relationships from becoming too emotionally intimate.
“That’s the insidious thing about NF, or any disorder by which one is different,” she says. “People live so much within themselves — too much within themselves, I think.”
In her early 40s, tumors began popping up on her arms, chest and face. “And then, you know, it’s a party,” she says dryly. “They just keep on coming.”
She got used to the stares and the second glances — sometimes, when she could muster it, offering a smile in return. But she hated hearing people tell young girls that looks and beauty don’t matter. If that were true, it meant that there was something deeper that people didn’t like about her. “When you’re immediately dismissed because of how you look, then you internalize that, thinking, ‘It’s me,’ ” she says.
Attempts at romance were difficult, especially as online dating — and its all-important profile pictures — became the de facto method of meeting people. But she had her books, a few close friends and a career in which she thrived.
Janet was 49 when she was struck by a car while crossing the street. She was thrown into the air and landed on her head. At the hospital, doctors told her she had a broken leg and a concussion that would take time to heal. But long after the leg mended, she still struggled to regain her balance. She would hold on to walls as she walked and would trip at odd moments. Her memory and cognitive ability seemed to nose-dive. She was told that the accident had caused hydrocephalus, or water on the brain, but two surgeries did little to alleviate her symptoms. By 51, she was in a near-vegetative state in a nursing home, unable to recall her own phone number or her mother’s maiden name.
A new doctor was consulted and a third surgery scheduled. This time, it worked. Her mind was back — and her perspective was indelibly altered.
“I realized I had never allowed myself to live,” says the now 65-year-old, who lives in a tidy rowhouse near Camden Yards. “I was very restricted, very repressed. I didn’t go anyplace, didn’t do anything.”
“So,” she adds, “I came out of it and haven’t looked back.”
Janet sought out social situations through her church and began to travel the world, visiting Cuba, Russia, Italy, Mexico and the Czech Republic. She stopped worrying so much about what people think of her, or what’s going to become of her. She was able to look back at photos of herself from high school and college and realize how attractive she’d been — but that came with the sadness of knowing she’d been too busy loathing herself to admit it. She decided then that she couldn’t afford to waste any more time with such nonsense.
“I wish I didn’t have quite so many tumors, but I do,” she says of her current attitude. “It’s how I look. And the irony is I’m going to look worse because more will come. So I might as well make the best of it right now.”
Janet says the hydrocephalus also stripped her of her primary coping mechanism: her intellect. Work became difficult, so she retired last month. And she can no longer rely on high-level conversation to carry her through any encounter. She greets each day, each interaction, with humor and vulnerability.
And that’s okay, she says, because without much short-term memory, “if someone disses me, I won’t remember!”
But she does remember some interactions, like a 3-year-old boy approaching her at a recent picnic. He touched the tumors on her arms and said, “Bumps!” she recalled. “And I said, ‘Yes, bumps.’ And he said, ‘Lots of bumps!’ And I said ‘Yes, lots of bumps.’ And then he called his brother over and said, ‘Squishy!’ ”
The conversation was funny, and sometimes Janet wishes that adults would act more like children when they encounter someone who looks different. If she could tell them anything, it would be “that it’s okay. It really is. And you might want to strike up a conversation because you might learn something interesting.”
But the person she really wishes she could talk to is her younger self. “Oh, sweetheart, it’s so much better than you think,” she would say. “Just take a deep breath — everything’s going to be okay.”
This Life is an irregular series about the extraordinary lives of ordinary people. If you know of someone we might want to write about, email firstname.lastname@example.org.