Why I am still isolating

I made this page because it is really painful to have to keep explaining why I can’t be out in the world. Sometimes I can’t find the words to explain at all. I’m really sorry for that. It doesn’t mean I’m not thinking about you. But it is hard to talk about being immunocompromised in an on-going pandemic that almost everyone has decided is over. (But wait, isn’t it over? Is there somewhere I can get more news about that?)

When I was younger, I was very sick with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) for 5 years. (What is ME? Is there a documentary I can watch about it?) I then experienced a long-term remission, something rare for those with ME—95% of ME patients remain ill.

I’ve had to be very careful to avoid a relapse ever since, and viruses have always been a serious risk for me. But covid has multiplied that risk by a lot. In fact, even people who have never had ME have a 15x higher risk of contracting it after a covid infection. It is estimated that of the four hundred million people worldwide who have had long covid, at least half also have ME. And these numbers will only continue to grow because the risk of long covid is cumulative with each re-infection.

Because I am trying my best to hold on to my remission in a world where there are no longer any mitigations to protect the most vulnerable against covid, I continue to isolate. One-way masking works, but it is not nearly as protective as when everyone masks and takes other precautions like testing and improving ventilation and air filtration. Other disabled, immunocompromised, and chronically ill people evaluate their risks in different ways. As for me, I have a very low tolerance for risk especially because the cognitive symptoms I experienced with ME—which were very much like dementia—were devastating to me as a writer and musician. I’d rather be able to keep writing and creating while isolating then risk it for pretty much anything else.

All that to say, I’m so sorry if I’ve gone a long time without responding or I couldn’t be out there when you hoped I could. Please know that I am with you in spirit and I am sending love your way.