“Where is my island?

Where is my moon?

And what the hell am I supposed to do

With another morning?”

From “Disappeared Planets” by Richard Edwards

“I think the best way of describing it is taking a stomach flu and times that by 50.”

This is how Richard Edwards, formerly of the band Margot & the Nuclear So and So’s, described his struggle with a medical condition called Clostridium Difficile Colitis – or “C. Diff” – a bacterium that can cause a range of symptoms, including diarrhea to fatal inflammation of the colon.

“It was pretty impossible to describe the level of pain. A lot of cramping in my abdomen. I lost weight really fast. I lost 40 or 50 pounds in what seemed like a week or two. Intense pain – eating anything. Drinking water was so painful it could lead to the shakes,” Edwards told me. “I went on the tour … It was basically 23 hours of laying in the fetal position and one hour of trying to prop up on stage trying to get through it. It was borderline zero functionality.

Photo by Bryan Sheffield
Source: Photo by Bryan Sheffield

“I mean you are dying essentially.”

Not only was the physical pain overwhelming, but also Edwards found that the emotional impact was severe. For Edwards, the most significant symptoms occurred at what should have otherwise been a glorious time in which he was married, had a child and new home, and was touring with his band. But instead, he found himself feeling depressed and burdensome to those around him in part because he felt defined by his illness.

“There’s a lot of guilt. Nobody likes to be a burden – especially at like 30. I was married at the time, had a kid. You can crawl around the house and attend to your kids and stuff, but you’re not at your best,” Edwards described. “You feel defined by that illness.  And it is difficult to continue to explain to people, if they aren’t feeling what you’re feeling physically, how bad it is. And there’s guilt even in that.

“It’s like all I do is talk about this.”

Edwards’ concerns are not unfounded. The development of a medical condition can often lead to a vicious cycle by which family members experience severe stress, and thus are less able to provide adequate support for their loved ones. More, the erosion of social support may have a detrimental impact on the individual’s medical condition.

“With any personal problem you decide to buckle up and get in there with them or you decide to cut them loose. And I would say I’ve dealt with my share of both of those things – as have many people,” he said. “In all honesty, there are some people that aren’t tough enough or strong enough to take an illness in someone else. That’s just the reality – it’s unpleasant to say that out loud.

“At some point it’s easier to throw that Jonah off the ship.”

Edwards experienced this reaction acutely when attempting to receive medical treatment for C. diff. He encountered practitioners who neither understood his condition nor cared to figure it out. “I was at a doctor who was out of network, laughing, saying, ‘You’ve been to all these places, what do you expect me to do?’ Here’s a guy just rolling his eyes at me basically,” Edwards recalled. “When you have an illness like this, you’re looking for one moment in the day when there’s some kind of hope. There’s some hope that this is going to get better … I felt suicidal after talking to him. I lost 50 pounds … It’s a hopelessness. These people are experts and your life is in their hands…and the expert is telling you, ‘fuck you.’

“It’s year after year and doctor after doctor telling you to try eating more yogurt.”

Things changed dramatically for Edwards when his friend, Tom Desavia, stepped in.  He referred Edwards to MusiCares, an organization affiliated with the Grammys and designed to help bring medical care to musicians in need. “I would get down and say I was a burden. And he would slap me out of that and say, ‘No dude. Nobody’s wiping your ass. You’re not needy,’” Edwards said.

“You’re actually amazingly getting shit done.”

Edwards soon began to see things from Desavia’s point of view – that just because he needed to pause to manage his condition did not make him dependent. “Anyone who’s been ill has had moments when they kick themselves for not being able to sustain a certain energy level or perform tasks,” Edwards said. “I made a record. I went on tour. I bought a house during this period. I was a daily parent to my child. I was in agony.

“I needed someone to tell me that you have to stop feeling guilty for having to sit down.”

Eventually, Edwards did find someone who could give him the medical care that he needed.  “I finally got a doctor who looked at me, put his hand on my shoulder and said, ‘I’m not intimidated by the fact that you’ve been to other doctors. We’re going to figure this out. There’s obviously something going on. Let’s just get started,’” Edwards recalled. “When you go to someone who says we’re going to investigate like it’s a mystery, and says we’re going to figure it out…

“It’s impossible to overstate how much that meant to me at that point.”

Edwards feels that while it is difficult, or even impossible to truly understand what another person is going through, the effort matters. “And that became a thing for sure – you can never really understand what’s going on for someone physically. But just the acknowledgment that they are feeling it can be more important,” Edwards said. “I can’t understand how chemo is – how that feels. Maybe it’s not my job to understand it. Maybe it’s my job to be there and to be supportive.”

One way of improving empathy is to at least understand how we feel about our own health issues, and use those feelings as a proxy for what another person may be going through. “Empathy training would be helpful where people would be trained to understand more of what someone is dealing with physically even though it isn’t happening to their own body,” he explained. “Project yourself into the future – everyone is going to struggle with some kind of illness at some point in their lives.”

For his part, Edwards feels that his struggle with C. diff has helped him use his songwriting to be more empathic. “I think there’s a certain type of crawling inside yourself a bit more when you go through something that’s life or death. I think I became personally much more empathetic,” Edwards said. “I started examining things like loss and absence and things you’d relied on … your loss of things that were innate to you, your ability to get on the bus and go tour, your ability to go live a normal life, your ability to ride your bike every day. I started laser focusing on that as a theme.”

And he poured all of that emotion into his new album Lemon Cotton Candy Sunset. So far the critics are recognizing that Edwards is tackling difficult and dark themes – and they like what they hear. Spill Magazine described Lemon Cotton Candy Sunset as an interesting and at times very disturbing album … “Van Gogh may have lost an ear for his art, but this man almost lost his life and is willing to sing about it.” And Substream Magazine said, “While wholly appreciated by enlightened followers, Richard Edwards is one of the most underrated songwriters of our generation … The album’s lead single, ‘Disappeared Planets,’ is pretty solid evidence that Lemon Cotton Candy Sunset will be one of the most affecting releases of the year.”

For Edwards, having finally received proper treatment to better manage his symptoms, he remembers the support he received and is keeping things simple. And he recommends others who struggle with physical or mental health issues do the same.

“Surround yourself with people who give a shit.”

Michael A. Friedman, Ph.D., is a clinical psychologist with offices in Manhattan and South Orange, NJ, and is a member of EHE International’s Medical Advisory Board. Contact Dr. Mike at michaelfriedmanphd.com. Follow Dr. Mike on Twitter @drmikefriedman.

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