Your Stories: In Honor of Robert Nance

My brother Robert Nance suffered from ankylosing spondylitis, but there was more to him than just his illness. Robert was an independent, caring person with a drive and energy that was unmatched. I want to share his story and also honor who he was as a person.

It started when he was a teenager. He would have a hard time getting out of bed. He would walk with a limp, and it seemed like the problem originated in his hips. The doctors just did not know what it was.

Eventually, he was using a wheelchair. But he was sitting up like a normal person sits in a wheelchair, and he was physically healthy. Later, maybe in his thirties, he had some mental health struggles. They had him on different medications, which affected him a great deal, and the health professionals seemed to focus more on the mental health side of things rather than his physical health.

He never really got a full diagnosis of spondyloarthritis until he was much older. I think it all boils down to the lack of his doctors knowing about that disease and what to look for, the signs of it. There’s so many cracks in the healthcare system. I don’t want to be negative, but I’m being 100% honest about it. Where he lived in rural Kentucky, there wasn’t good access to specialists. He was only approved for twenty physical therapy sessions. They didn’t talk about medications or diet or any other treatments. His legs began drawing up and he had muscle atrophy.

Robert had been living on his own up until just a few weeks before he passed away. He had his own home, which was built through Habitat for Humanity through the town that he lived in. My mom had donated two acres of her property for the house to be built. Unfortunately, due to the severity of his condition, a lot of the stuff that was supposed to be handicap accessible inside his home, like the light switches, the thermostat, there were little things that were overlooked. All of those things were barriers for him, but he always would find ways to work around it and improvise.

He was always a very independent person, I will say. He suffered, yet he was always determined to figure out how to do things for himself. He never gave up hope. He had the most drive I’ve ever seen–and energy. He literally had more energy than I did. He would want to try to rearrange his living room. He didn’t want to just sit around.

He was an avid comic book collector. He loved to garden. He had these pots and soil on his porch, and he would grow flowers. Sometimes he would even bring them inside and tend to them. I can remember him having these little mini rose bushes– I couldn’t keep those things alive. But they were thriving for him; he had the greenest thumbs ever.

He loved pets; he had two cats and a little Jack Russell terrier over the years. He loved animals and he loved nature. He loved sitting outside in the sun. And he was really big into music. It made him just light up. And I know that he loved his family so very much.

I’m learning now that ankylosing spondylitis is more common than we knew. But there wasn’t that awareness where we lived. And medical care doesn’t always go well hand in hand with any kind of mental health care, even though it should.

I wish I could have found SAA years ago. I wish my brother Robert could have gotten the help and care and support he deserved. But now, I just want to honor him and make sure people know who he was as a person.

Editor’s note: It is no secret that spondyloarthritis causes many physical challenges that vary in severity from person to person. At the same time, treatment options that include exercise, dietary changes, medications, and physical therapy allow most people with SpA to avoid the most debilitating physical outcomes of the disease, such as total spinal fusion, kyphosis, and muscle atrophy.

Robert Nance, who lived with severe axial spondyloarthritis among other health issues, passed away on September 3, 2023 due to complications from pulmonary embolism. His sister Ruby Fryman wanted to share his story as a reminder of the dangers of stigmatization as well as the importance of awareness and access to treatments to ensure better quality of living.