A Story of One Kidney that Helps Define a Life of Selflessness and Perseverance
My lovely neighbor Pam and I got to spend a little time together getting to know each other recently. We talked the usual small talk and shared assorted morsels about our lives. Like most moms, myself included, Pam was beaming with pride as she talked about her grown children and grandkids. Pam’s son is a successful engineer in Silicon Valley, and her daughter is an English language professor whose personal triumph moved me to write this piece. Let me preface this by saying that I’m deeply honored to be sharing the very personal journey of a woman who embodies the true meaning of perseverance and selflessness.
Pam’s family hails from the small town of Crossville, Tennessee. When Pam’s daughter Heather was a baby, Pam noticed that her eyes didn’t follow her as is typical with infants. The pediatrician told her she was overreacting, but Pam, fearing the worst, insisted on taking the baby to an ophthalmologist. Already a mom to a three-year-old toddler, she knew better and followed her instincts. Heather was just three months old when she was diagnosed with the rare eye disease Retinitis Pigmentosa. This disease causes severe vision impairment resulting in the loss of peripheral vision and decreased vision at night and in low light. The disease is often referred to as “tunnel vision.” Heather is considered legally blind.
Heather has faced so many obstacles that many of us often take for granted. Navigating the world was challenging physically and emotionally for both mother and daughter. Her thick glasses made her an easy and constant target for the grade school bullies. Even the teachers were sometimes cruel to the little girl, playing pranks on her by taking away her cane or deliberately placing objects in her path, causing her to fall. Completely ignorant of her special needs and Pam’s attempts to get help from the school board, the family could take no more and decided to relocate. In the more metropolitan city of Knoxville, they would find an abundance of resources at their disposal.
At first, it wasn’t easy, for Heather was quite the stubborn child. Even getting her to wear glasses at first was a challenge. In fact, when she first got them, she refused to wear them and promptly tossed them out of the car window! But wear them she did. Pam laughs and describes her daughter’s outbursts as “Heather Tantrums.” As stubborn as Heather was, she was also fearless. She learned braille and mastered the ability to get around on her own. A self-proclaimed introvert, Heather grew up an incredibly independent and quite adventuresome adult. A good student who loved school, she went off to Southern California to study at Biola University, where she had the opportunity to go on mission trips. Shy but independent, she continued her studies and received her master’s degree. She became close friends with a fellow Japanese student who invited her to join her on a visit to her family’s home during school break. Heather fell in love with the country, the culture, and the people, so much so that she decided to teach there after graduation.
She flourished in her adopted country and eventually married and had a child of her own. The marriage, unfortunately, didn’t last.
No longer a stranger to the country, Heather continues to teach and lecture at the university and is very well-respected in her field. She is a perfect mom to her beautiful daughter.
Heather became quite close with one of her colleagues, Joël, a Canadian native who now makes his home in Japan like Heather. Before long, the two became a couple.
Their relationship has been challenged by Joël’s battle with polycystic kidney disease. His health in recent months has been declining, making it impossible for him to continue teaching. The prognosis would be grim if not for a lifesaving kidney transplant. The criteria for getting on a list in Japan and finding a living donor is no easy task unless your partner and best friend happens to be a perfect match and is willing to give up an organ!
The surgery was to be on St. Patrick’s Day, and so with great wit, Heather named her donor kidney “Patty.” After all of the testing, off they went on the long trek on the train to the hospital in Tokyo with a couple of purple kidney-shaped stuffed toys to represent their adventure. They were devastated to learn that Heather had an elevated temperature which forced the surgery to be postponed until May.
It has been a long battle for these two, to say the least, to get to this place which took a lot of preparation and planning and a lot of perseverance. Joël, humbled and grateful beyond his own words for this gift of life, put together an incredible video (to the tune of Tina Turner’s classic song), with clips of Heather’s friends and family all over the world telling this brave, stubborn, beautiful woman that she is “Simply the Best.”
“Joey The Kidney” formerly known as Patty, is being transferred as I write these last few lines. Godspeed Joey. I wish you a safe journey and hope you enjoy your new home.
I’m not crying; you’re crying.
There is a plethora of information on the web if you are interested in becoming a donor.
Photo Courtesy of Sheri Nadelman