November 2, 2017

Joe, NATX Member since 2015

Joe, with a 6’10” stature, played Division I basketball for the University of San Diego, part of the team that made it to NCAA March Madness in 1984. He then earned his Ph.D. in Sociology from the University of Notre Dame, graduating top of his class. Joe possesses a striking vibrancy: you can almost see the synapses firing in his brain as he enumerates the complex challenges his illness brings.

The connection between his brain and his nerves, however, is more tenuous. Joe developed neuropathy in 2011 and reached full remission by 2012, playing basketball again. But by March 2013, like a switch, his neuropathy returned with slow and steady vengeance, giving him intense pain in his feet. For the next 2 years, he had 300 visits with neurologists and other specialists with multiple failed diagnoses and treatments. Finally, in March 2016, he was given a definitive diagnosis: idiopathic axonal peripheral sensory neuropathy.

Idiopathic (cause unknown), of course, is a maddening diagnosis, and so too was his journey to receive legal disability while he was physically unable to work. After two years of numerous appeals, Joe now receives enough disability income to get by. “All the money worry is the biggest psychological struggle,” he lamented, as well as “losing my identity as an academic, an intellectual, at a time when I could limp around the house, but even three steps were painful.” Although he is no longer in a wheelchair, Joe’s neuropathy symptoms typically render him homebound and feeling isolated at times. When he goes out, he feels scrutinized and judged for his invisible disability. “I have dire pain but no one can see it. I sense the tension, the urgency, of the people around me. I’m 52 years old, but I feel like I’m 76,” he said. In the midst of increasing degeneration, Joe fell into relapse and checked himself into rehab. “I want to live, to have a good life…I wasn’t sure about that two or three years ago. Through this odyssey, I’ve realized my own grit and resilience.”

For Joe, hope has been a precious commodity. His journey for healing has been hard-won and still one he fights daily. “The key as a neuropathy patient is to find a sense of purpose in life.” Joe found NATX in 2015 and has been a loyal supporter since then, attending support group meetings and making meaningful connections with other patients. Joe gives back to NATX because he understands the value of offering hope and a supportive community to others going through the daily struggles that he also faces.