(3 minute 30 second read)
John Rose misses a lot about being healthy and having full body mobility. For one, he misses directing choir — before his diagnosis six year ago, he was in his 39th year of teaching high school chorus in Miami, Fl., and sat as the Director of Choirs at Florida International University. He also misses saying, “I love you,” to his friends, family and wife in his own voice.
But the other thing he misses? Traveling comfortably in his own vehicle.
Luckily, last month the National Mobility Equipment Dealers Association awarded John a free wheelchair-accessible vehicle in the National Mobility Awareness Month’s Local Heroes contest of more than 900 participants. American Honda Motor Co. generously donated a new Odyssey minivan and Vantage Mobility happily donated the wheelchair conversion. Soon he will be riding in safety and style next to his wife, Laura.
John has amyotrophic lateral sclerosis, or what is more commonly known as ALS or Lou Gehrig’s Disease. ALS is a motor neuron disease where nerve cells that control muscles in the face and limbs lose strength and die.
John cannot walk, speak or even lift his arms. He also eats through a feeding tube; but even still, Laura says he remains an optimistic and thankful man who is living a happy life. She says he never complains about the circumstances he’s been given.
After his diagnosis, John finished his year as choir teacher. He lost the ability to conduct with his arms, but the students learned to follow his eye and mouth movements. Laura says all his students held an unrelenting respect and love for John, and many still check in to see how he’s doing. Despite his setbacks, John led them to success, and they won top–notch awards at every competition that year. Laura says at one competition a judge was brought to tears by the chemistry between John and his students.
He also founded a non-profit organization called “Where Every Child Is a Star,” a summer camp program where children would learn all aspects of the arts. Laura says he never once let money keep kids from participating, and he used his own savings when he couldn’t find funding for the program.
“When my wife received the phone call and told me that we were one of the three to win a disability conversion van, I was excited and extremely grateful for this opportunity,” he said via email using a computer that reads his eye movements to type. “For a second, I almost did not believe we were chosen … Once it sunk in, I thanked God for continuing to be with us through the challenges that we face daily.”
The new independence provided by the wheelchair van will come as a major life change, as he and Laura typically don’t leave the house except for doctor’s appointments, due to John’s deteriorated leg strength and fear of a fall.
“Being able to stay in the wheelchair while we travel will be amazing,” he says. “No more will we have to worry about her lifting me in and out of the chair.”
The two plan to attend church and movies and take a road–trip back to Florida to visit friends and family, as they recently moved to Lexington, Ky., for a medical operation for Laura.
John says it’s been a delight to experience the different seasons outside of Florida, and above all, he’s thankful to God for what he’s learned in life.
“My wife thinks I am crazy for wanting to sit and watch snow fall. It (is) also exciting to see the changing colors of leaves in fall and flowers during spring … In spite of everything, I cannot thank God enough for what he is teaching me through this.”