Don't Get Around Much Anymore
Missing the world, missing my health, missing political allies, and missing my mom
March 15, this past Sunday, was Long COVID Awareness Day.
I’d like to have published an article that day, or gone to a protest, or joined fellow patients at one of the various events taking place in honor of the occasion (shoutout as always to the excellent Sick Times). But I was too ill, as I often am.
I am homebound, only occasionally leaving my apartment with difficulty for medical appointments, and my welfare at home varies. On good days, I can read and write and spend time with friends. On bad days, I “crash,” am beset with migraines, I wait for the storm to pass. I take my medications. I am a reluctant convert to audiobooks. I cover my eyes with satin and silk. Little luxuries. I cry.
How to raise awareness for this disease that makes us so tired, so weak, and so small? I have tried so long to be loud, but who can hear me here, alone in this apartment?
On Long COVID Awareness Day, I posted a few tweets about my life, my experiences, yet felt so far away from the world. It felt perfunctory, hopeless. Is it possible to speak about Long COVID without having others speak over you? Without having people flood in to insist you are not ill, or that you are ill from the vaccines, or that your experiences haven’t happened, or that your suffering is unfortunate, but necessary?
What about the alienation of speaking about Long COVID and being continually greeted by the deafening silence of those pretending not to hear?
Oh, yes, people you know - knew - from your everyday life, those who fight for “equality,” whatever that means to them. People with strangely large platforms online, you don’t know why they have them, now you suspect it’s because they told a good joke once or twice, nothing more. Influencers. Politicians. They say nothing. They do not care.
My mother died on January 3, and since then I’ve struggled to return to my advocacy work.
My mom cared.
She died after a fall, after a brain bleed. I do not think she forgot me until after she forgot how to breathe.
Beware the Ides of March, she used to say of March 15, the day Julius Caesar was assassinated, and the famous line in Shakespeare’s play. Beware the Ides of March, and now she’s dead, and the Ides of March is Long COVID Awareness Day.
The romance is draining from the world.
The art is draining from the world.
I am draining from the world.
