Lupus

Being Chronically Ill In The Age of COVID-19

I happened
upon the May 23, 2020 issue of the New York Post and was greeted with “One
Man’s Plea” regarding re-opening New York City, the crux of which was, “The
elderly and infirm can continue to be isolated,” but the quarantine must end
for everyone else.
 

This trope
makes me so angry.
Why is
this narrative okay? Why is this thought process okay? Because we’re useless?
Because our lives don’t matter? What I’ve learned from this pandemic is that a lot
of people lack a sense of social responsibility. It should not be every person
for themself. Like refusing to wear a mask because it may make you physically
uncomfortable temporarily. But it may also save other peoples’ lives if you are
asymptomatic but have COVID-19. Everyone’s actions in regard to this virus have
consequences on other people. It’s not just you endangering your own life.
While I
have been very much in support of the Governor of Michigan throughout the
pandemic, I am somewhat dismayed at the lack of effort that has been put forth
regarding at-risk populations.
Did you
know that in the Governor’s plan for re-opening Michigan it is strongly
suggested that at-risk people shelter-in-place through Stage 5? Stage 6 is
post-pandemic. As in, there is a vaccine. Best case scenario, that’s six months
away, but more than likely that’s 18 to 24 months away. And that’s really only
if it’s not a live vaccine because that will mean that many at-risk individuals,
including myself, won’t be able to get it. And that would mean that everyone
who isn’t at risk that is already calling the vaccine “the government’s excuse
to microchip us” would have to put their theories aside and get vaccinated for
the sake of others, because many of us who would get it won’t be able to.

I’m sick
of the crying and bellyaching about how people are minimally inconvenienced by
wearing a mask. I’m angry that a lot of people are willing to throw away the
lives of others. The “why should I give up my freedom for your life” is more
“why should I give up my life for your freedom.” But really, it’s a false
dichotomy. Such questions and decisions diminish us all. It is inherently
ableist to think that the “elderly” and “infirm” can be thrown away.

We’re
being forced, not into institutions, but into our own homes, where it is
presumed we will stay and be quiet until the appointed time it is designated
safe – if that ever happens – for us to re-enter the world. But we all have
lives that exist outside of the four walls of our homes. And those lives are
vibrant, valid, and as important as any one else’s.
So while
I’m happy that everyone else’s life is opening up, restaurants and bars are
re-opening, I’m sorry to say that I won’t be going. Because the reality is, the
only one who is going to keep me safe is myself. And for now, that means
staying at home.
As of this
writing, the guidelines have changed. But at-risk individuals should still
practice social distancing and wearing masks, while apparently no one else has
to. Staying home is safer. Now we have a target, not on our backs but on our
faces. This everyone-else-can-go-about-their-business is bullshit. And it’s
tacky. The state basically re-published the guidelines and plastered on it
“Reopening programs and services for older adults age 60+ and vulnerable
individuals with underlying health conditions.” This isn’t progress, this is
politics.
And we
weren’t asked. As far as I can tell, no patients or doctors were consulted in
this decision-making. And we deserve a place at the table. No evidence has been
provided. And maybe there isn’t any, but if there isn’t, that should be
disclosed. “We have no evidence to support our poor decision-making. Consult
your health professionals for guidance.” Whatever. That’s better than what we’ve
got. And what we’ve got is nothing. If, after careful thought, consideration,
and planning, it is still deemed that the most realistic option is to
shelter-in-place as much as possible, I will take it. But I cannot and will not
accept no effort or thought being put into this decision.  
The
reality is, this pandemic has brought into full relief the injustices that have
always existed in this country, where minorities of any kind are at higher risk
for worse outcomes of everything, including COVID-19. And as the last several
weeks have shown time and again, at risk of death from many things other than
deadly diseases, simply because of their minority status. 
So if this
feels like a kiss off, it probably is. As I railed against this to a friend who
is not chronically ill, she said that the state should have just put a post-it
note on the document that said “be careful, good luck…” It’s basically akin to
“stay safe out there.”

This is a
failure of epic proportions. It’s not just a healthcare system that was
unprepared, it’s a government that has been teetering on the brink for longer
than we’d like to admit. It’s that America has never had a good safety net in place
for the most vulnerable among us. And to think that altruistic people will
remain so when they are out of work and struggling themselves is completely
unrealistic and puts the blame everywhere other than where the blame should be.

So before
newspapers like the New York Post give front-page status to a whiny baby, maybe
they can make room for the people that need their voices to be heard. Maybe
someone, for one minute, can try to understand that while I am lucky to have a
home that is livable and clean, has functioning utilities, and is safe, being
at home indefinitely may not be the best option, physically or emotionally, for
me or any other high-risk person.

Truly, I
have very little desire to be anywhere but home right now. It’s not that I
don’t yearn to get back to my life as it was before March 13, 2020. I do. But
right now, everyone is a threat, those wearing masks less so than those who
aren’t. I will live in a bubble that I didn’t consent to.

My chronic
illnesses have morphed into something that I clearly haven’t accepted because
in 12 years, with the exception of once, I’ve never had to accept this kind of
personal protection. I never signed up for being chronically ill meaning that
I’d be afraid to leave the house and I’d be afraid of every single person that
I came in contact with. I never considered that what could be floating around
in the outside world could be worse than what was going on inside my body. And
I never expected that when everyone had to be weary of that threat that the
resounding response would be “Not me. It’s not my responsibility.”

Because we
know that “The elderly and infirm can continue to be isolated” isn’t just the
plea of one man, but the plea of many.

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