From independent to immobile in weeks: One man's battle with multiple sclerosis

Some people are happy if they can keep one garden going. Rich Payne takes on the daunting effort of three.

Between the perennial garden, shade garden and the pollinator garden, the only time to rest is when snow is around the corner. These vibrant spaces provide the perfect setting for spending time with his basset hound, Violet.

“Just being out there, there's always something to do, always something to divide and add or remove,” Rich said. 

So when Rich felt an electric shock down his back and legs after simply placing paper on a coworker’s desk, he took pause. But just for a moment. Then next day, walking became difficult. Rich tried to write it off – he must have pulled something and didn’t realize it.

It wasn’t until a few days after that his movement deteriorated to the point he could no longer ignore the problem.

“I was in the backyard playing ball with my dog. I tried to run with her and when I attempted to run, I took a step and fell,” Rich said. “That was when I knew something was very wrong.”
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Rich is as active in the community as he is in his garden. Serving on nonprofit boards like the Youth Service Bureau, which helps abused, homeless and at-risk youth and the Educational Center for the Visually Impaired complement his decade-long tenure at Warren-Boynton State Bank where he serves as vice president.

In a matter of weeks, Rich went from being unable to walk in a straight line, to needing a cane, then a walker, to struggling to just take a few steps – even with a walker. Assistance was needed for dressing himself or getting something to eat or drink.

The initial suspicion for his condition? Multiple sclerosis.

“It was shocking. It was really difficult to grasp how quickly life had changed and what was in front of me,” Payne said.

“You're a busy, active person. You're on the go daily. There aren't enough hours in the day to do everything that you need to do. And suddenly you're sidelined. Your life becomes limited to your home. The days are very long and you are left to sit and think, ‘Could this be my future?’”

Multiple sclerosis is an unpredictable disease that targets the central nervous system. Onset usually occurs between ages 20-40 and affects different people in different ways – some may have mild symptoms and others may lose the ability to write, see clearly, speak, think clearly or, in Rich’s case, walk.

As someone who takes pride in his community and his role in improving it, accepting the reality of his situation became deeply painful. It was no longer just physically overwhelming, but mentally taxing as well.

“It felt humiliating having to have help getting dressed, getting in the shower – even needing a glass of water was just too difficult for me to manage,” Rich said. “There is the concern that you're a burden, or you're quickly becoming a burden. And that in and of itself is emotionally overwhelming.”

That surreal feeling spiked while sitting in the Simmons Cancer Institute (SCI) parking lot as Rich geared up for his first appointment. “I remember pulling up and thinking, I can't believe I'm here. I can't believe this is really happening,” Rich said. “But meeting with my doctor was completely disarming – I was completely put at ease from the moment I walked in the door, from the greeter to the receptionist to the nurse, and then finally my doctor.”

“The amount of information that he provided me was so welcome, because I think the more you know about what you're dealing with, the better off you are. He was so quick to address any concern that I had and put my mind at ease for a few concerns I had about taking this treatment.”

Thanks to SIU Medicine staff guiding Rich through the diagnosis, treatments and physical therapy, Rich made a remarkable recovery. Instead of pulling weeds or planting new irises, he poured that energy into recovery. 

After five hard months came a monumental milestone – taking Violet for a walk.

“I remember a neighbor coming to their door and out onto their porch to cheer me on,” Rich said. “To be able to independently do that felt like a complete return to my life.”

“It must be what a gold medal winner feels like or a lottery winner feels like. I will never forget that moment.”

While Rich’s functions have fully returned and he’s able to live the same life as before the diagnosis, MS has no known cure. Every six months, Rich returns to SCI for six hours of infusions. It’s a long time for anyone – especially Rich – to sit stationary. But for those six hours, he’s at peace. Not only because it’s a treatment that allows him to live the way he wants, it’s an opportunity to see those who genuinely want to hear what’s new with Violet or the latest success in the garden.

“Every time I walk in the door, I'm greeted as if I'm a friend. They're sincerely glad to see me,” he said.

“I just want others to know that every time I visit SIU Medicine, I don't feel like just another patient or a number. I feel like they're glad to see me and that my care is as important to them as it is to me.”