By John Anderson
John Mauro is a familiar figure in Auburn. Most of us first met him at the snack shack at Franklin Field or the concession stand at the Pappas Recreation Complex. If you were very lucky, you attended an event and ate food prepared by his company, Simply Delicious Catering. Mauro is a chef, a photographer, a community volunteer, a husband and a father. He also has a disease that’s hard to explain, Ataxia.
On Wednesday, John Mauro brought his explanation to the Auburn High School Auditorium where all juniors and seniors gathered during their free period. His wife Dana and family friend Moira Cristy assisted him with the presentation. In the audience was his son, Auburn senior Zach Mauro. Ataxia is both a symptom and a disease, and while rare, it is not new. My 1977 Dorland’s Medical Dictionary (from my UMASS days) lists several variations, but the basic explanation is the most direct, “failure of muscular coordination; irregularity of muscular action.”
John showed videos from his life that were both educational and embarrassing. They were painful to watch. When searching for a cure, it is easy to show others in pain. It is a totally different thing to put the spotlight on yourself. I made a note on my reporter’s pad, “Brave.” John has had Ataxia for 9 years, and I met him in year two. At that point he was still getting multiple diagnoses from medical professionals, and his head was spinning with a lack of information.
The final diagnosis in 2009, unfortunately, was no better. Currently, Ataxia is incurable; so John’s efforts to educate, inform, and fundraise have a special purpose. While he may not benefit from a future cure, he wants to get young people thinking about this disease. AHS biology teacher Ellen Kaschuluk facilitated Wednesday’s event. In her freshman class, a requirement is to write a paper on neurological disorders. John said, “Young people might choose to do research in the future.”
The 7th Annual Walk ‘N’ Roll will be held tomorrow at Lemansky Park in Auburn. Registration begins at 9:00AM and the walk begins at 10:00AM. Since many victims of this disease can no longer walk, they use recumbent tricycles or other devices to roll through the 3-mile event. Donations will benefit the National Ataxia Foundation, and both participants and spectators are welcomed. More information on Ataxia is available at rideforjohn.com.
With a condition like Ataxia, it would be understandable if John Mauro just took it easy, but that is not John Mauro. He works, stays physically active, and continues his education mission on Ataxia. He admits, “I can only do one thing at a time” since he must concentrate on each motion from taking a step to blinking his eyes. And, this is exhausting. “I have to live by the clock.”
After nearly drowning in his hot tub when temporary paralysis overcame him, he knew he had to manage his life better. On that day, fortunately, he had trained his toes to hit the button to release the water. Now he does adaptive skiing, kayaking, zip lining, and bike riding on his trike. He also carries an alert device that can summon help and give his GPS coordinates should he get in trouble. John is not a guy to slow down and told me, “Accidents can happen to anybody at anytime.” His “can do” attitude is an example to all with limitations in their lives. Thanks for sharing.