It is really hard for me to do this, but it is time to ask for community help. It has become clear that my long string of bad health luck points to a deeper problem, and that I will not be able to lead a functional life without significant medical help. 

Before Epstein-Barr Virus, I was an active, creative and enthusiastic person. I exhibited my art internationally and received grants and press coverage. My first film was screened in five festivals, won two awards and was a finalist for a third award in Germany. I released my first solo EP, was playing in multiple bands, and was slated to tour cross country. I am at my happiest working on varied creative projects.

Over the years I also pursued a long-running interest in creative communities. I ran a blog dedicated to experimental art and music communities and recently published a book chapter on this work. In the past I’ve received funding to organize art and music festivals and teach workshops in Chile, Brazil, Italy, Germany and NYC, and have always found joy in bringing together passionate and interesting people to share their work. 

Nearly a year ago, in December 2019, I noticed I was increasingly fatigued and discovered a large lump near the base of my neck. I tested positive for a reactivation of Epstein-Barr Virus, also known as mono. Soon I got a sore throat, low fever, and my abdomen swelled up. I returned for a follow up and was told my spleen and liver were swollen, that these were normal symptoms for mono, and that I should wait two to four weeks for the virus to run its course. It has now been a year.

Currently I have painful lymph nodes at my armpit, groin, and base of my neck, a sore throat, painful spleen and liver, and crushing fatigue. My symptoms are not as severe as the first three months of the illness; yet they refuse to clear up completely. I can push my energy and leave the house once or twice a week, but I crash afterwards and feel worse. I spend most of my time on bedrest. 

Unfortunately, this isn’t the first time that my illnesses have lingered much longer than they should. This recent bout has forced the conclusion that I’m working with a pattern, not a coincidence. Even after the acute infection is treated, I tend to have ongoing symptoms for months or years. 

It took over six months to recover from my first bout with mono as a teenager, six months to recover from a mystery bout of chronic fatigue that forced me to leave college for a semester, two years to recover after contracting tapeworms during a research project abroad, six months to recover from pneumonia, eight months to recover from a mystery bacterial infection that twelve doctors couldn’t diagnose, three years to recover from contracting chikungunya fever and giardia simultaneously after a brief trip to Mexico, and I have been struggling with a recurring fungal infection for ten years. On top of the infectious diseases, I have also been diagnosed with interstitial cystitis, post-viral syndrome, chronic fatigue, irritable bowel syndrome, hemiplegic migraines, cholinergic urticaria, GERD, pharyngolaryngeal reflux, eustachian tube dysfunction, asthma, new and worsening allergies, idiopathic anaphylaxis, a benign (yet uncomfortable) cardiac arrhythmia, and recurring vasovagal syncope. In my adult life, I have been sick more years than I have been well.

I have benefitted from complementary practices (such as diet changes, supplements, energy work, etc.) but I believe it’s important to consult with doctors. However, I have hesitated to do so because of the cost. I need a broader understanding of why I get sicker than other people, how my chronic conditions relate to my infectious ones, and what treatment options are available to me. I found an immunologist and an infectious disease specialist who are willing to take my case, as well as several highly regarded functional doctors who specialize in complex chronic cases. 

The few consultations I’ve been able to afford are already yielding results. One doctor hypothesized I’ve been struggling with low grade Epstein-Barr Virus (EBV) for the last sixteen years, not just the last one, and the reason why I get abnormally sick is because the infectious diseases I’ve contracted have all actually been co-infections with EBV. EBV-literate healthcare practitioners stress the importance of getting chronic EBV under control, as it is an oncogenic virus that directly leads to autoimmune illness and cancer. My case is increasingly urgent. 

Doctors want to run specialty tests to investigate underlying reasons for my health issues, such as an immune deficiency, rare disorder, genetic defect, heavy metal exposure, nutritional deficiency, hormone abnormality, etc. Unfortunately, many of these office visits and laboratory tests are out of network and not covered by insurance. 

At the time of my EBV diagnosis, I was on the cusp of being able to make a living with my creative work, though I was still working in an art gallery, bartending, and freelancing. Now it’s risky for me to interact with the public as an immunocompromised person, and my freelance projects dried up due to the pandemic. One thing in particular that breaks my heart is that it’s become extremely difficult to sing, which was a big part of my life (and income) before I got sick. I’m facing the daunting task of reinventing my income streams while dealing with a life-altering illness, and the frustration of relapsing every time I try to work. 

If I were blessed to have the next few months of living expenses and medical bills covered, I would be able to focus solely on recovering my health and abilities, while receiving the specialized medical care it is now clear I need. This would alleviate tons of stress and get me on the path toward wellness. 



I understand we are in an unprecedented situation and times are difficult for many people. Please only donate if you are financially in a position to do so. I hope to be in a position where I can pay forward the faith and generosity in the future.