Washington DC VA Medical Center
Living with Peripheral Neuropathy and Allodynia
A 58 year-old Veteran maneuvers his scooter through a crowded supermarket. He has hazel eyes and an easy smile. He looks like he might be headed to the beach, he’s in thin short shorts and a thin silky tank top. Some onlookers stop and stare, some cast him harsh looks. Some will laugh and take photos of him without his permission. Someone stops and says something derogatory to him.
Most of the time, his fellow human beings don’t take the time to learn why Ron Brimmer, a Marine Veteran, is dressing the way he does. He tries to ignore the nasty looks and comments. Every so often he will hand them a business card that explains that he suffers from a fairly unknown condition called peripheral neuropathy and allodynia and everything that touches his skin hurts:
“During service to our country, I encountered numerous injuries. Due to severe nerve damage and other medical disabilities I suffer from, this is not a choice, but rather through necessity, that I dress as I do.” Contrary to what strangers may think, he is not some eccentric exhibitionist;he is a disabled American Veteran.
According to DC VA Medical Center Neurologist, Dr. Beth Murinson, allodynia is a type of sensory impairment associated with some neuropathic conditions. To patients with allodynia, stimulus that is normally not painful causes extremely painful sensations.
“Neuropathy is often something that people can’t see but which produces a lot of suffering,” Dr. Murinson said. The condition is believed to be caused by confused messages among the nerves which interpret sensations. Things as simple as clothing touching the skin or a mild breeze can make the body scream “pain”.
“Imagine having a horrible sunburn,24/7,” Mr. Brimmer explains. “Everything that touches my skin hurts.” He has to have his clothing custom made using a special lightweight fabric imported from Italy. The seams of the clothing must be worn on the outside because seams cause extra friction and intense pain. He has to wear light colors because he doesn’t really sweat and has to be careful to avoid heat exhaustion.
Aside from being extremely painful, the condition is isolating and restrictive. He can no longer go wherever and do whatever he wants. He’d love to travel again and has family in Ireland he longs to see. But before he travels, he has to make a lot of special arrangements with the airlines and hotels to be sure the staff is informed of required attire. “It’s a really big hassle,” he said. About the most he can manage is a drive to Ocean City, MD, where at least there, his manner of dress is usually not an issue. “Well, one time I had one guy threaten to call the police on me because of how I was dressed.”
Even something as simple as going out to a neighborhood restaurant with friends is now out of the question. “Our friends will no longergo out to eat with us, they just can’t handle it. Who could blame them,” he said with a shrug. He has come to accept his condition.
His wife, Breeda Cashman, handles the situation much differently. She has become very protective of her husband. If she sees someone about to take a photo, she will quietly stand and physically block the shot. She has also been known to go into a stoic silent stare down with strangers who are being rude. Usually if they encounter problems, stares or comments at a business, she simply refuses to go back.
When asked what he wants others to know about his condition. “I wish they would try to understand before they judge.” He has a quote from Herodotus that has become his mantra -- The only good is knowledge, the only evil is ignorance. He says a few people are nice and will actually stop and ask him curious questions. But, that is on a good day of which he has too few.