The back cramping that I typically experienced every autumn flared up, but instead of lasting a couple of weeks it wouldn’t go away and instead spread all over my body. I found myself with no energy and constant chills; I was seemingly trapped in a fog, and when I would get up to try to eat, go to the bathroom or just sit with my family I would soon be back to bed.
I looked around for a doctor but got accused of being a “drug seeker” when I complained about the excruciating pain. With every accusation the more frustrated I got, but then amazingly I found a physician who really listened to me. It was in his pain management clinic that I was first diagnosed with fibromyalgia/myositis.
From there I was referred to a rheumatologist, and after she repeated the same blood test four times she diagnosed lupus, scleroderma and dry mouth. The reason for so any tests? I was told only 3 percent of men get scleroderma. I was also told that my diagnosis was grim: I was given two to three years to live because of my high pulmonary blood pressure and the risk of stroke, heart attack and renal failure.
Back at home, Epsom salt baths seemed to be the only thing that helped abate the migrating cramping and excruciating pain. The longer I soaked the more it helped, so to fight the boredom I put a powerful stereo in my bathroom. And as a musician I naturally wanted to sing along.
I was lucky that my voice and breathing technique weren’t affected like the rest of my body. Trained in formal operatic technique since the age of 6, I tested my ability to sing and found I still could.
During these soaking and singing sessions I started noticing familiar feelings. Waves of pain-easing tingling sensations spread throughout my body, and I felt the same way I did when performing on a big stage with the endorphins rushing in. Those of us in the music business always referred to it as the “performance high,” but I called it finding the light.
Around this time I felt not only physically better but I actually started feeling hopeful. I started doing research on my disease and working with my physicians on how best to manage it. It took eight years, but my doctor and I finally found the right combination of medication – including an effective blood pressure one – and supplements. The two-to-three-year prognosis no longer applied.
Now, I have good days as well as bad ones days. On the good days I’m able to function for two-four hours without interruption, and I’m working toward returning to writing, recording and releasing new material.
My motto has always been “adapt and adjust.” It got so dark for a time that I couldn’t do this, but it was ultimately music that helped pull me through. As one of my favorite new recording artists, Tyler Joseph from the band Twenty One Pilots, has said:
The meaning of purpose for me is by creating something, if it be by writing lyrics, painting a picture, by expressing yourself through art if it’s photography or music or theater, or whatever it is. It doesn’t have to be artistic, but if you create something and only you know the meaning of it, that’s the beginning of purpose for you.
For those out there who are suffering: Start expressing yourself, and by creating art in whatever form you can, you may find strength and purpose. You may find the light that helps you adapt and adjust to whatever disease you’re dealing with.
We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to host a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories.
Robert Combs has experience as recording artist, lyricist, composer, arranger and producer. He started performing/touring at the age of 8.
Image by stux