YORK — Eight years ago, Tiffany Rebar was sitting in her living room, 34 weeks pregnant and sewing a nursery mobile, when her vision suddenly grew blurry and wavy.
At age 32, Rebar was facing what she now calls “the event” — likely a stroke of mysterious origins that left her with permanent and unpredictable neurological deficits and ended her career as a nurse practitioner.
But that’s not the story Rebar wants to tell. Her story is about finding herself again.
Now 40, the York County resident has discovered a new passion for writing children’s literature. She has published one book, “Welcome Home Melanie Mae,” based on her two daughters’ imaginary adventures with their beloved stuffed giraffe, and has more on the way.
Rebar’s books are aimed at preschoolers and kindergartners, in part because a reading test that measures how quickly eyes can scan across a page — and not get stuck on words — puts Rebar at a first-grade level despite her advanced education, vocabulary and comprehension.
“I wondered, ‘Is there any better way to honor your new self than to write a book that you could read to your children, which was a joy of mine?” she asks. “I’m so grateful to have a new source of belief and identity.”
The friendly, gentle Melanie Mae teaches young readers the days of the week by describing a playtime activity for each as she settles into a human family. The book also includes giraffe facts and a list of hidden objects to find.
Two more “Melanie Mae” books are written but not yet published, with a companion activity book in the works. Rebar also is penning a memoir on her transition from medical provider to patient while raising her girls, 10 and 8, with her husband, Dr. Michael Rebar.
“I’m so proud of her for finding something new that she can be passionate about,” says Michael Rebar, an optometrist and Air Force reservist. “It was devastating to her to lose her career as (a nurse practitioner), and it took her a while to come to terms with it.”
Despite ongoing medical setbacks, Tiffany Rebar has no interest in inspiring pity or special treatment. She simply wants to make a difference, just as she did in a nursing career that she fought to build as her family’s first college graduate.
“I’ve decided to be uncomfortable and push past my fear of being judged, so I hopefully can inspire others to be brave, stand tall, be unique and find their place,” she says. “Just like Melanie Mae.”
Always a go-getter, Rebar grew up in Johnstown, Pennsylvania, and earned a nursing degree from Duquesne University. She also completed a master’s-level family nurse practitioner degree at Thomas Jefferson University.
As a registered nurse, Rebar worked in a Level 1 trauma-surgical intensive care unit and neuro-surgical ICU, where an agitated patient once attacked her on an overnight shift and caused injuries leading to two back surgeries.
As a nurse practitioner, Rebar worked at a geriatric continuing care retirement community and in outpatient adult primary care, occupational health, inpatient drug and alcohol and skilled nursing rehabilitation, and long-term and memory care services.
“I loved my career and my patients,” she recalls. “I had a specific identity and a sense of pride about helping people every day.”
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The event that changed her life
In 2016, the Rebars had busy, active and happy lives with their careers and then-2-year-old daughter. They were eager to welcome their second child following what had been a normal pregnancy.
Then came the event. Rebar’s symptoms gradually increased to include muscle weakness, imbalance and trouble walking, ultimately landing her in a neuro ICU in Philadelphia for a stroke evaluation.
While brain scans showed no definitive evidence of a stroke, clinical findings suggested a cerebellar stroke, or blockage in blood flow to a brain region involved in balance and body and eye movements. That diagnosis with a negative MRI is rare but possible, according to the American Heart Association.
Questions poured through Rebar’s mind: Will my baby survive, and how will I deliver her? How will I keep up with my toddler? Will my husband have to become my caregiver? “The fear was indescribable,” she remembers.
At 37 weeks of pregnancy, doctors induced labor and Rebar gave birth to a healthy girl. She was prescribed daily aspirin to prevent blood clots and underwent three months of physical therapy and a year of visual rehabilitation. For months, she was so sensitive to light that she had to ride blindfolded as a car passenger.
Over the next seven years, the road to Rebar’s new normal has been both harrowing and triumphant. She has consulted top specialists nationwide in search of a more precise diagnosis and treatment plan but mostly hears a version of, “This is unique.”
“I’ve been told, ‘You have a delicate brain’ and ‘Your brain software does not work correctly,’” she says.
Often, Rebar’s neurological deficits are invisible to people around her. She can drive when her symptoms are stable, uses word-recognition techniques for reading and leans on technology reminders for appointments and errands. She has a team of physicians monitoring her and takes medication for symptom control and stroke prevention.
Yet Rebar’s eyes occasionally dart uncontrollably, and she struggles with focus, memory, mental fatigue and sensitivity to light and peripheral stimuli. She is prone to making “silly” mistakes, such as only buying milk on grocery runs and forgetting she had a full list.
Unpredictable major episodes, such as difficulty swallowing, walking and speaking, have put Rebar in the hospital, feeling as if more of her old self is slipping away. During her most recent crisis, in October 2022, she could only say “no” or “yes” for several days, until infusions of high-dose steroids returned her abilities.
“Nothing in all my years of being a nurse could have prepared me for the terror of being a patient who can’t communicate effectively,” she says.
A 2017 move to Virginia, where her husband served on active duty at Langley Air Force Base, was an important fresh start. Finding journaling therapeutic, Rebar began writing about her girls’ dress-up sessions, parades and safaris with their towering stuffed giraffe.
In June 2022, as she watched an Outer Banks sunrise after a restless night of sleep, Rebar wondered if Melanie Mae’s character might appeal to a wider audience. Her husband was supportive but anxious.
“I was nervous about the process and whether she could do it with her ongoing visual and neurological issues,” Michael admits. “There was much uncertainty already around her medical issues, and I didn’t want her to experience another blow mentally if things didn’t work out.”
Over a sometimes-tedious 18 months, Rebar finished writing and collaborated with the Pennsylvania-based Christian Faith Publishing to illustrate and release her book in November 2023. Since then, she has given presentations at elementary schools, done several book signings and donated copies to local libraries.
While appearances can trigger heightened neurological symptoms for hours or days, Rebar is determined to show “the event” does not define her, as well as to encourage kindness and patience in a world where invisible disabilities and pain are common. Luckily, the smiles of her young fans are powerful rewards.
“I’ve learned that you can choose your perspectives,” she says. “You can focus on your brokenness or your blessings. As a good book relies on the perspective of the narrative, your life story relies on yours.”
“Welcome Home Melanie Mae” is available at the Tabb and Yorktown public libraries, Turn the Page Bookshop and the Playful Educator in Williamsburg, and online at Amazon and Barnes & Noble.
Alison Johnson, ajohnsondp@yahoo.com
