Whenever Michele Holbrook boards a plane, she carries a letter from her doctor explaining that despite appearances, she needs special accommodations bulkhead seat if possible, so she can stretch out her legs. Otherwise "my knees compress into my spine, and I'm in excruciating pain." But she's used to the questioning stares and, sometimes, outright hostility she often receives from other passengers. “I had a lady say to me one time, 'Who do you think you are that you can preboard?"" she says. "I look so normal on the outside that people don't understand." On the inside, however, it's a different story. Holbrook's body is riddled with tumors that invade her brain, press against her spine and crowd her lungs-more than a hundred in all.
"Anywhere there's a nerve ending, one of these tumors can grow," says Holbrook, 57. "And you have nerve endings from the top of your head to the bottom of your toes." Her tumors, which are benign but could at any point turn malignant, are caused by a genetic disorder known as neurofibromatosis, or NF. The form of the disease that Holbrook has-Schwannomatosis, marked by internal and slow-growing tumors is rare, affecting only one in 40,000 people. And it is torturous: "I'm in pain every day." But Holbrook, a real estate agent who lives on Florida's Amelia Island, is determined to "turn a negative into a positive," she says.
That woman on the plane? "I don't hold that against her. I told her what I had, and it was an opportunity to talk to her about NF. She apologized. So you can't get upset." Driven by her deep faith and a seemingly boundless store of energy she's become an outspoken advocate for children affected by the disease and has helped raise more than $90,000 for the Children's Tumor Foundation and for NF research by running, rowing and organizing events for the cause. "The more awareness we raise, the better chance of us finding a cure," she says.
This story is from the February 12, 2024 edition of People US.
Start your 7-day Magzter GOLD free trial to access thousands of curated premium stories, and 8,500+ magazines and newspapers.
Already a subscriber ? Sign In
This story is from the February 12, 2024 edition of People US.
Start your 7-day Magzter GOLD free trial to access thousands of curated premium stories, and 8,500+ magazines and newspapers.
Already a subscriber? Sign In
MAKING MEMORIES AND A MOVIE
LISA RINNA & DAUGHTER DELILAH HAMLIN - THE 25-YEAROLD JOINS THE FAMILY BUSINESS ACTING!-AS SHE TEAMS UP WITH MOM FOR A LIFETIME FILM
WHAT I KNOW NOW
NO LONGER CRYING 'MORE, MORE, MORE' IN THE MIDNIGHT HOUR, THE '80S SUPERSTAR SURVIVED HIS DRUGFUELED HEYDAY AND IS ROCKING HIS ROLE AS DAD AND GRANDPA
My Mom Mama Cass
FIVE DECADES AFTER THE DEATH OF THE MAMAS & THE PAPAS SINGER, OWEN ELLIOT-KUGELL'S MEMOIR GIVES AN INTIMATE LOOK AT THE MUSICAL LEGEND
Their Moody, New Orleans Wedding!
THE ACTRESS AND HER CAMERA OPERATOR GROOM SAY I DO' IN THE BIG EASY
SEINFELD'S SWEET SIDE
THE COMEDY ICON SHARES HIS FUNNY PERSPECTIVE ON MARRIAGE, FATHERHOOD AND TURNING 70-PLUS WHY HE MADE A PROUDLY SILLY MOVIE ABOUT POP-TARTS
A FORMER ADDICT HELPS TO PREVENT LETHAL OVERDOSES - Saving Lives
MEET THE COUPLE WHO GIVE OUT EMERGENCY MEDICATION AT MUSIC FESTIVALS TO STOP DEATHS FROM OPIOIDS
'I'M GLAD I GOT HERE'
IN A NEW MEMOIR, WHOOPI GOLDBERG OPENS UP ABOUT HER MOTHER'S MENTAL ILLNESS AND WHAT IT TAUGHT HER
In Mallory's Honor
She lost her daughter in a boat crash caused by Paul Murdaugh. Now Renee Beach is working to fulfill her child's mission in life
RYAN & HIS FALL GUYS
RYAN GOSLING AND HIS TEAM OF DARING STUNTMEN PAY HOMAGE TO HOLLYWOOD'S REAL ACTION HEROES-AND REVEAL THE SCENES THAT SCARED THEM THE MOST
HARVEY WEINSTEIN - WHAT'S NEXT AFTER A SHOCKING COURT DECISION?
AS A NEW YORK COURT OVERTURNS THE MOVIE MOGUL'S RAPE CONVICTION, WOMEN WHO CAME FORWARD SHARE THEIR OUTRAGE AND ANGUISH