A Nord Stage 3 keyboard, a mystic surf-green Fender Telecaster guitar, and an amplifier rest just a few feet from his bed, but they might as well be thousands of miles away. Some days, Joshua Weitzman, 22, is hardly well enough to get out of bed, let alone play the music he yearns to create.
Music Dreams Deferred Due to Illness
Joshua was accepted to New York University’s prestigious music program, driven by his passion for music despite two autoimmune conditions that taxed his energy, sapped his strength, and frequently hospitalized him.
Then came a cascade of new, mysterious symptoms that began in April 2021 following a bout of pneumonia during the COVID pandemic. His mind “fogged up” at moments, his heart raced, his body temperature fluctuated wildly and debilitating fatigue set in beyond anything he’d previously experienced with Crohn’s disease.
After one semester online at NYU, Joshua was forced to take medical leave. Early on, there was little direction and few answers for the symptoms that were overwhelming him. He studied scientific literature. He connected with others on social media. He tried to manage a disjointed group of providers, labs, and clinics. Long before receiving an official diagnosis, Joshua suspected that he had myalgic encephalomyelitis, chronic fatigue syndrome (ME/CFS), and related conditions.
The Impact of ME/CFS
ME/CFS is a disease characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort (including physical, cognitive, and emotional stressors).
Stuck at home and often confined to his bed—even reading or talking could be challenging—Joshua gazed out the window of his darkened room and thought about his peers moving on with their lives. They were going to school, getting internships, going to parties, and dating. Would he ever be able to do things? Would he ever be able to get a job; to live independently…to create music?
As Joshua’s father, I worried about all those things as well. My heart ached at seeing his suffering. I struggled to accept what was happening to a young man who I saw not only as a loving, thoughtful, spiritual child, but who I believed had a gift and purpose to share with the world. How was that going to happen from a darkened room?
Doctors, Horses…and Zebras
We sought out medical advice. But for over a year after the onset of his new symptoms, providers had few answers. Worse, some were dismissive. One provider shrugged her shoulders at Joshua’s reports of ongoing, intense fatigue, characterizing them as manifestations of his autoimmune condition. “As they taught us in medical school,” she said, “when you hear hoofbeats, think horses not zebras.”
The ‘zebra trope’ means that a doctor should first think about what is a more common—and potentially more likely—diagnosis before considering other causes or explanations. In this instance, it also meant that the provider was not really hearing Joshua. The initial response was dejection and frustration, but inspiration soon followed and the concept for “The Zebra Chronicles” was born.
Coping with health conditions is challenging enough, but a lack of compassion and empathy on the part of teachers, employers … and health care providers can be as, or more, devastating than the conditions themselves. Joshua has experienced empathy/compassion deficits in each of these settings. It is not farfetched to speculate that others with chronic or significant illness have had similar experiences.
What is “The Zebra Chronicles?”
The Zebra Chronicles is, primarily, a call for more empathy and compassion in places where it is too often lacking, including schools, workplaces…and in our healthcare system. As the recent COVID-19 pandemic demonstrated, good health is not a guarantee. We are all vulnerable. At any moment, life can be fundamentally altered.
In addition to calling for greater empathy and compassion (something we’ll be referring to as “Get Zempathy”), The Zebra Chronicles is a platform to raise awareness and help others cope with chronic or significant health conditions. Joshua continues to benefit from the experience of others in his ongoing health care journey and hopes to help others who face a similar situation.
What Else Will The Zebra Chronicles Feature?
- Posts on challenges and opportunities for empathy and compassion at each stop along the medical journey, from accessing and scheduling an appointment with a provider to the encounter in the exam room or clinic.
- Posts and interviews with others in the community on parent/caregiver perspectives in managing the emotional, practical, and financial challenges of caring for someone with a chronic or significant illness.
- Posts and interviews with others in the community that address the challenges and opportunities for empathy and compassion in many other areas ill and vulnerable people must navigate, including school, work, and relationships.
- Posts on spirituality and faith—elements we believe to be essential to both healing illness and healing societal ills.
Hitting the Right Notes
Joshua continues to actively seek treatment for his ME/CFS and related conditions. In January 2023, he moved from his home in Baltimore to Los Angeles to gain access to a greater number of providers available in California. Through diligence and fortitude, he has assembled a team of top specialists.
“It’s like being a good music producer who puts together a lot of elements to produce a great song,” Joshua says. “I must do that to get the outcome I want.”
He still struggles in Los Angeles, referring to his energy level as being a rapidly draining battery. His will and spirit long to move forward, but he is often held back by a body that won’t cooperate and, worse, doesn’t recharge easily.
When his musical instruments are not within reach, our collaboration on The Zebra Chronicles gives voice to his hopes and dreams—and mine.
Joshua’s music may be silenced for now, but deep within him is a symphony waiting to be heard.