Nine Musicians Discuss Chronic Illnesses
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While the lifestyle of a musician often gets glorified as a occupation filled with the excesses of sex, drugs and rock ‘n’ roll, more often than not musicians encounter the same problems as everyone else. This includes their health, both in an everyday sense as well as long-term illnesses. While addiction, depression and overdoses usually take the headlines with rockers, more common are tinnitus, diabetes, eating disorders and other chronic illnesses that affect the general populous.
Although some chronic diseases do develop as occupational hazards, many performers endure these ailments long before and after their careers as musicians. The nine musicians who were open enough to talk to Paste about their experiences with chronic illness prove that the musical life isn’t always as glamorous as it seems. Listen to their stories about the realities of playing music while struggling with chronic illnesses ranging from kidney gailure to multiple sclerosis.
End-Stage Renal Disease (aka, kidney failure)
How long have you had end-stage renal disease?
How does it affect your professional life?
Before I received my kidney transplant (first one in 1993, second in 2007) I was on dialysis, which I self-administered twice daily, morning and night. This kind of dialysis (called peritoneal dialysis) is meant to be done in a clean environment, which can be hard to come by while on tour. If I was lucky, I’d have a hotel room to myself. I could, however, have to kick people out of the backstage and do dialysis there in the club if we were not staying in whatever town we were playing. Occasionally when we needed to drive after a show to get some miles out of the way I’d have to do a “D” (what I called it) in the van with the guys wearing surgical masks and making sure the windows were up and the air conditioning or heaters off.
Also, because my kidney was not working to filter out what it needed to (waste products and fluids), I had major dietary restrictions. I had to watch my intake of sodium, protein, potassium and phosphorus. That means potatoes, bananas, avocados, nuts, dairy, anything with salt, any processed food…pretty much anything you’d typically eat while on the road, which made meals very difficult. I had to watch my fluid intake; too little and I could become dehydrated, too much and I would suffer from edema (swelling in my legs caused by fluid build up due to lack of kidney function and compounded with too much sodium if I ate at a restaurant).
So, it’s pretty easy to see how kidney failure and being on dialysis was a huge pain while working as a musician.
How does it impact your personal life?
Now with my new kidney transplant it’s not nearly as challenging—my diet isn’t as restricted, and I just have to take medication twice a day and have regular doctor visits. But it’s still an added stress, perpetually something to been mindful of, and because my current meds suppress my immune system, I am more susceptible to illness than most people.
Outside of your professional and personal dealings with end-stage renal disease, what else would you like others to know about it?
While Rogue Wave was touring in 2007, I was told by my doctor that I’d have to start dialysis right after a tour because my kidney was failing. I’d already had a kidney transplant in the early ’90s and had opted for a relatively unknown method of dialysis (peritoneal dialysis) that enabled me to be more mobile and independent, administering it myself rather than going into a clinic and hooking up to a machine 2-3 times a week for 5+ hours at a time. Obviously touring with that type of dialysis would be impossible. I had a positive experience with peritoneal dialysis prior to my first transplant and with Rogue Wave getting really active, using this kind of dialysis again was an easy decision for me to make.
I wanted to show that it was possible to lead an active lifestyle while being on dialysis and waiting for a kidney transplant, so I suggested to a filmmaker friend of mine (Jim Granato) that we should document this experience and hopefully use the film as a helpful, inspirational and potential educational tool for other people who might have to go the same thing I did. What started as a small project turned into a feature-length documentary called D Tour that follows me and the band over the course of about a year while I do dialysis, tour and wait for a kidney to become available.