Humans of ME/CFS
My name is Ron. I’m a professional cellist, conductor, and recording artist and I have ME/CFS.
In 1980, I had a bad episode of pneumonia which left me bed ridden and continuously fatigued long after the infection was gone. Night after night, I would awaken totally exhausted in a pool of sweat. My doctor could see the pneumonia was gone, but had no idea why I couldn’t get my strength back. He recommend an acupuncturist who I started seeing twice a week to work on my energy and stamina. With his help, along with a very loving and devoted wife, I was able to start auditioning again and actually pulled it together to successfully get into a major orchestra.
The schedule was extremely taxing and I was often fatigued but maintained with the help of lots of supplements for immunity and energy, a good diet, and a long nap every day. I was finally officially diagnosed with ME/CFS in1998 just around the time I expanded into my work as a recording artist and conductor. I’ve always been an overachiever and possess a very strong will and determination which has helped me get through even the worst of times with this illness. My mantra eventually became (addressing this disease) “you’re not going to stop me!”
I can’t say I haven’t suffered all these years and still do with the ongoing archetypal symptoms of insomnia, brain-fog, memory loss, swollen glands, sore throat, sinusitis, excessive fatigue and pain particularly abdominally. I’ve taken just about every blood test there is, MRIs, CATs, sleep analysis studies and on and on and not surprisingly, the present medical establishment has never found anything. The doctors I continue to see still to this day show skepticism about how these intense, ongoing symptoms could be caused by this misunderstood thing called ME/CFS.
I’m truly what you would call a high functioning person with this condition and unlike so many of the wonderful people who have offered their testimonials here and have this disease in its most extreme manifestation, I’ve gratefully been able to have a family with children and pursue a career as a musician, but not without much difficulty and challenge. After I reached retirement age a few years ago, I decided to move on from orchestral playing and conducting as well as a lot of recording but I still perform in a limited amount.
For me, there actually have been some blessings having this disease. It taught me to only do what I love, try to always simplify, and most importantly, I had the profound realization that I’m not just this body. I’m in my body but there’s something immensely powerful and uplifting within me that I learned to access through an experience and knowledge taught by meditation. This practice has become my foundation to help me survive and thrive living with this horrible disease.
I know all of you wonderful CFS patients know what that feels like. For me it has always happened after I went through a stressful period emotionally or physically and/or over doing it. Over doing work…..and even overdoing play. I came to the decision decades ago that I refused to stop living and enjoying my life living with this disease. Even if I pay the price now and then. I mean if they haven’t figured it out yet what causes and cures this condition they’ve named Myalgic Encephalomyelitis (it took me years just to be able to pronounce it correctly in public) I just personally refused to stop living waiting for an answer.
Until about a year ago. The combination of a very stressful family problem and what the world situation had come to, that brought me to an absolute low mentally and physically. I wasn’t sure if I could or wanted to continue on even though I’ve always been a very positive and optimistic person. I really had reached the end of my road and all I could do was pray for my answer.
I heard about a book that I found in the public library called Medical Medium by Anthony William. It personally helped me finally understand things about this condition that I never understood and a solution that was right for me. The information, wisdom and knowledge has been an effective treatment protocol for me and my condition is improving in time. Improving! Remarkable! I am no longer having major horrible episodes sometimes lasting weeks.
This is a mean disease and disproportionately attacks women……particularly young women. When I read some of the testimonials from young females it breaks my heart. I’ve been very lucky to have had a wonderful family and career (this photo was taken recently just before I performed at the Biltmore Estate.) Hey, I’m almost 72 and I should be happy with all I’ve done in my life living with this but it ain’t enough! I want to feel even better. My very best wishes to all of you struggling with ME/CFS and never give up in your journey to healing.