Lauren Hill: 'I want everybody to know I never give up'

The day we visited was a good day, the kind that occur less and less for Lauren Hill. She had only the pain in her joints. No dizziness, no migraines, no need for a wheelchair. She laughed and smiled and paid special attention to Sophie, the toy poodle she got shortly after her diagnosis some 14 months ago. She spoke easily of the tragic miracle her life has become.

"My body is shutting down, and there's nothing I can do,'' she said.

Diffuse Intrinsic Pontine Glioma. Such an intricate name, almost elegant-sounding, for such a brutally simple disease.

Diffuse: To spread or scatter widely.

Intrinsic: Anatomy: Belonging to or lying within a given part.

Pontine: Of or relating to the pons, a band of nerve fibers in the brain.

Glioma: A tumor of the brain composed of neuroglia.

It has been explained as a rare form of cancer, incurable, that doesn't gather in one easily excised, malignant lump, but rather spreads like the tentacles of a jellyfish. There is no "getting it all'' via surgery. It'd be like cleaning a global milk spill, with one big mop.

Lauren Hill knows she will die soon. Not today or tomorrow or the day after that. The DIPG is gradual. That's good and bad. It has allowed Lauren a clarity of vision and purpose, and time to act upon each. It's also a terrible, progressive constriction of her life and its possibilities, which are no longer endless.

No one but those doing the dying knows what that's like. All of us come with an expiration date. Few of us have a timetable as accurate as Lauren's. None of us has any idea how we might react, handed her circumstances.

She's a model, though. If you believe each of us is here for a reason, you'll find no better evidence than this 19-year-old, basketball-playing young woman from Lawrenceburg.

The singer/songwriter Cat Stevens once sang, "Oh, very young, what will you leave us this time? You're only dancin' on this earth for a short while.'' Lauren will leave dancing. She will leave as a teacher, on a wave of courage, in a cloud of determination, borne on a wind of grace. Lauren will have found what all of us seek, and often find only when it's too late. Call it a sense of spiritual purpose.

In the past several weeks, she has engaged us like no one else. Maybe, ever. She has played briefly in three basketball games for Mount St. Joe. She has raised more than $500,000 for DIPG research. She has taught us what it means to be alive.

The day we visited, I decided not to ask a lot of questions. I wanted Lauren to guide the conversation: Lauren on Lauren. I wanted to listen. In the comfort of her room at home, surrounded by all the things and people she loves, I wanted Lauren to teach me. Maybe, I would learn. Wisdom is infinite.

"I haven't been feeling good. I have hour spurts when I feel fine and I can walk normal and stuff. Other hours, I'm wobbling. I feel like there's somebody behind me kicking my legs out from underneath me. The whole tumor symptom thing is crazy. It's unpredictable. It really messes with your life.

"My legacy? That I started something nobody else has been able to start. Nothing has come out of 30 years. Hopefully all this fundraising stuff will get research going. They won't have to say that nothing has happened in 35 years. Because Lauren Hill raised money, we're learning more.

"Last January, I said to God I'll do anything to be a voice for this cancer and all the kids that can't speak their symptoms. Parents are left baffled, because they don't know what's wrong with their kids. (Kids) can't express what's happening to them. I prayed I'd be the voice and that I'd do anything that gave me an opportunity to raise awareness and raise research money.

"That was a couple months after diagnosis. The first couple months I was angry. Why does this happen to me? Why does it happen to anybody? I believe God has the last say. And I feel like I've accomplished what I intended.

"My values have switched around. My dad asked me what I wanted for Christmas. No material item matters to me. I just want to spend time with my family.

"Heart, desire, intensity.'' Lauren shows me a fine-marker drawing she did, of a hand holding a basketball. Those three words are intricately drawn, to form the hand and ball. "Playing to the final buzzer, not worrying about the last play or the play that's coming. People get hung up on their mistakes. That's what I like so much about basketball, that it's a fast game, you can correct your mistakes so quickly. You can redeem yourself by doing something good.

"All we have is the moment we have right now.

"There's a lot of good people in the world. I would never have guessed how many.''

LeBron James sent her a pair of Beats headphones, and one of his size-17 sneakers."I don't need two shoes. My feet aren't that big.''

Someone gave her a jar of sand. "On one side, it says, 'Hardships often prepare ordinary people for extraordinary destiny'. C.S. Lewis said that.''

She has photo albums that she loves to look at when the migraines have intruded. She has scrapbooks and letters she has received. Upbeat slogans are everywhere.

"Don't Ever Lose Hoop. That was pretty clever. I like that.

"DIPG is a pain the butt. I never know when I'm going to have a good day, and when my legs are going to be working. My life is unpredictable. Day by day, moment by moment. Sometimes there are tough moments, but I have mom and my family.

"My body is shutting down, and there's nothing I can do. It kind of makes you feel helpless. I'm losing muscle. I don't like to ask for help. Last night, I had a mental breakdown. Mom (says), 'You need to communicate what you need from us.' I know.

"It's like losing your independence a bit. Being dependent is kind of hard. I've never been dependent.

"I ask God for a cure for cancer and that my family will be fine when and if I'm gone. They are who I worry about. My family and my friends.

"What is it like to know you're dying? It's like I want to get stuff done. Like I'm in a rush. People are told they have five weeks to live, and they live five years. I don't know.

"I want everybody to know I never give up, even though I have my low moments and I feel like giving up, because they're awful. Please, is it over?

"My family gets me back on track to my never-give-up. I just wish it would be easier. I know when I'm having a hard time, it effects everybody else.

"If I do pass, I don't want people to say I lost. I want, 'She kicked DIPG's butt and raised a lot of money for research.'

"By the end of the year, (we) want to raise a million dollars. That'd be really awesome. That'd be the best Christmas present.''

Paul Daugherty writes for the Cincinnati Enquirer.

Donate to The Lauren Hill Tribute Foundation online here or by mail at The Lauren Hill Tribute Foundation, c/o The Cure Starts Now, 10280 Chester Rd., Cincinnati, OH 45215