Thread by @ooana

Im gonna get personal for a moment. There’s a lot to be afraid of. There’s a lot to feel angry, betrayed, hurt and even ashamed of.

But there is one thing that I think about every day.

Im an only child. My parents are in their 80s. Leaving their home is not an option so

as I share this personal fear please don’t say to me “just leave.” Please. It’s complicated, but it’s not a choice I can make. I won’t leave them behind to these wolves. So…what scares me?

I have a rare condition called CRPS. I got it after a surgery on my ulnar nerve (basically the funny bone) a few years ago. I was lucky. The same day I was going to go see the surgeon for a follow up to what had been a very successful and easy surgery I picked up a plant…

…suddenly I felt a razor blade go into the flesh of the palm of my hand and slice quickly and repeatedly; like slashing. I dropped the pot and looked for what could possibly have cut me as I simultaneously realized, I’m not bleeding. “That’s weird” I remember thinking. But it

must just be my nerve healing. I went to the surgeon. Within a few hours I found myself surrounded by the head of Pain Management and several other doctors from department and they’re eyeballing my arm and shoulder and asking me questions before leaving me to my thoughts while

they spoke. Two returned, the head of the department and a doctor who within days Id see above me (For the first of many times) with a needle as long as a chopstick that he was easing into my neck. This same man that day said “we have bad news, good news and a request.”

I remember being very confused how I got there and hoped I’d remember these three, evidently, really important points. The bad news “you have CRPS”, the good news “we caught it very early” the request, “don’t look it up until we are done treating you.” I complied. I’m glad I did.

Had I not the days that were bad would have scared me even more than they did. I didn’t know pain like this was possible. I didn’t know a pain like that couldn’t have relief. I didn’t know that that first razor slicing my palm would be, comparatively, not all that bad compared

to what was to come over the next year. If I’d looked it up, I may not have been able to imagine that I would be free of it - even relatively speaking. rsds.org/anewfourletter…

“CRPS stands for Complex Regional Pain Syndrome, formerly known as Reflex Sympathetic Dystrophy, or, RSD. There is another, more sinister, name for it, “The Suicide Disease.”

Why the “Suicide Disease?” CRPS, usually starts in a limb, which manifests as extreme pain, swelling, limited range of motion, and changes the skin and bones. The McGill pain index, a scale for rating pain, ranks CRPS higher than childbirth, amputation, and cancer.”

I’ve been incredibly lucky. Im in remission. I’ve recently had flare ups that I’ve been able to address with some occupational therapy and, if I leave NYC, swimming. I even got to soak recently in a mineral pool which was magical…poof. It vanished.

But why do I need to leave nyc to find a pool? This is why.

In June, my doctor sat down with me and he said with a tone of real sadness “Im so sorry. You cannot get the COVID vaccine, Ooana. You must not.” He told me what happened to his other patients,how the pain came on suddenly for so many and said “I don’t know what to do for them.”

I had this letter and I felt secure because of it. Of course anyone would respect this. No one would demand that I get a vaccine with this level of risk. I was wrong.

I’ve shown my letter to someone, and had them take their time reading it only to say to me “you can go in and use the bathroom.” My response “I don’t need to use the bathroom. I live a block away, remember?”

I graduated from Tisch School of the Arts, NYU in 2000. I drove my parents nuts because I applied early and didn’t apply and told them I wasn’t going to apply anywhere else.

In March 2020, I shot a performance piece confronting COVID policy in front of the empty

Wintergarden Theater.

I can’t go to the theater now. I can’t go to a museum. I can’t go to a concert…or a pool.

I’ve been called a parasite (to my face) and lost people I thought were friends.

Yes, I’m scared by how I’m treated. It’s scary to know that people would feel

better about me, see me as a human being and…I wouldn’t be shunned by artists (this is maybe the most painful reality) and denied what I would never ever dare deny them…it’s unimaginable to me. But that’s not what I think about every day.

Every day I know that my Governor or Mayor just might listen to some fellow NYers that believe I should be forcibly vaccinated.

My mother’s family survived Hitler, and are victims of Stalin. My grandfather spent 10 years in a Romanian Gulag - tortured, then died there. I know the kind of people who don’t see any value in the autonomy of the individual. Hell, they don’t believe in it the same way someone

might say they don’t believe in unicorns or fairies. They find it trivial. I know, they find me trivial.

The mandates went into effect almost a month ago to the day. I can’t believe this has gone on this long. I never would have imagined that this would be the world we allowed. I sometimes wonder if so many who died of AIDS who fought back against this very kind of insanity who

knew what kind of man Fauci is, what the FDA and CDC and pharma companies and the media and academia and and and and and are capable of lived…if they’d have stopped this. Then I remember that waiting for someone to stop this isn’t how they stopped this.

But what if I can’t stop them?

And what if that wish for me to be forced that I hear so many make, or to be hurt like I’ve heard enough make happens. That’s my personal fear. Everyday.

https://twitter.com/ooana/status/1450238524175917058