Humans of ME/CFS
I have authored, coauthored, and contributed to forty college textbooks, most of which were written while suffering from ME/CFS. I contracted the disease in 1992. Like many others, it began with mono. However, my prolonged and profound fatigue and immune deficiency didn’t improve with rest.
Worse yet, my wife soon began suffering from the same symptoms. We had a newborn, no support system, and both of us were bedridden. Even the smallest task took all of our energies. Somehow, working together, we managed to care for our daughter.
Over time, we became unwelcome puzzles to the medical community. They tested us for all the common maladies, even AIDS, with no results. One respected physician finally told me in exasperation, “I have six kids, I’m exhausted all the time too.” He, like many in his profession, just didn’t get it.
Even my brother, a nurse, advised us that the only way to get better was to push ourselves. However, we had learned the hard way that overexertion resulted in to relapses, making our symptoms worse, not better.
Throughout the nineties, we both slowly improved and eventually found a physician who, not only knew about ME/CFS, but specialized in treating it. Of course, there was no cure, but we discovered that some of the symptoms could be lessened with treatment.
Along the way, I managed to teach and coauthor textbooks with my wife. Each day was a challenge, requiring both of us to lie down and rest for hours. In 1997, I left the university to write full-time. At the turn of the century, I got the opportunity to coauthor a book about the research division of the world’s largest software company. I knew the danger in attempting such a herculean task. Nonetheless, it was the chance of a lifetime, so with my wife’s support, I undertook the project.
I began conducting back-to-back interviews with the researchers at the company and with other scientists across the country. I spent evenings and weekends writing. Eventually, I suffered a massive relapse which sent me back to bed with a host of new painful symptoms. To add insult to injury, the dot com bubble burst and our book contract was cancelled. So, it was all for nothing.
I spent the 2000s recovering, most of it in bed. I was only able to teach online and coauthor smaller textbooks. In 2011, I had the distinct honor of coauthoring a major textbook with my daughter. That text is now in its second edition and remains a bestseller.
Today, I am retired. I still require extensive rest each day and I have never regained the ability to tolerate even mild aerobic exercise, like walking. I try to live within my constraints and enjoy the moments of energy I have with my family.
Despite the limitations this disease has imposed on my life, I am grateful to have been in a profession where I could continue to work and pursue my passions. I know many others have not been so fortunate.