For years I have pondered this question, this push that society has moved towards that we must go back to normal. And I ask, normal for who?
As we enter into the 4th year of the pandemic, acknowledged as such by a surprising 51% of the American population (as of March 2023 reported on by Gallup), it's hard to believe that over half of our population still believes COVID is ongoing amid the stoppage of reporting among journalists and public health authorities combined and the seemingly normal looking Instagram feeds and packed restaurants and concerts.
But this isn't really a post diving into the idea of is COVID still a problem or not, no I'll save that for someone else to ponder over.
Instead, as our summer picks up here I am met with this overwhelming sense of guilt - put on me by those around me, intentionally or not that I really ought to get out there and start living my life.
Early on when people were trying to decide what precautions they wanted to take or if indoor dining was an "okay" thing or not, I had a similar conundrum.
I stopped going out to restaurants in 2019 because it was simply such a painful and overwhelming sensory experience for someone who was constantly nauseous. The stoppage of dining in that way didn't impact what I may or may not want to do on any given day, because going out to eat wasn't something I did anymore anyway.
So why did I find myself in the crosshairs of people who were upset with me for not wanting to go out to eat in the first place.
Wanting to shop inside grocery stores was another big one that has remained rather constant this whole time.
"Don't you want to pick out your own produce?"
"When will you return to shopping inside?"
"Will you ever feel comfortable getting groceries again?"
I first began utilizing grocery pick up a while before I accepted how sick I really was and between my 60 hour work weeks and full time college courses and various doctor's appointments and routine massage therapy appointments, Walmart's curbside pickup became my most used form of shopping. I'd very occasionally stop in someplace on my way home or run over to a Sendik's on my lunch break to get some fresh produce, but the rate at which I perused the stores taking my time in each aisle and browsing for new and exciting things began to drop dramatically.
By the time I was on disability for my migraines (and at the time other undiagnosed conditions) and living on my own I relied almost exclusively on a combination of meal delivery kits and to my door delivery using Instacart.
After a particularly scary incident shopping groceries at Target where I got so dizzy and discombobulated I ended up crawling into the toilet paper shelves to escape the bright lights and being escorted by Target staff who just wanted to make sure I had a way to get home safely, I realized shopping was just incompatible with my health and I never really knew if starting a trip would end in success.
The wider availability of curbside pickup, broader delivery options... and so on, means I never have to go through that hassle again and now as a "standard" offering for stores, so long as I can drive to pick things up, I don't have to deal with the 10-20% additional fees and tips I was dealing with when the services first began.
Of course I miss picking out my fruit and veggies! I am so sick of slimy arugula! But I am not going back to shopping for myself under even the best of circumstances.
These things have stood as standard issues, even amongst the disabled community members who continue to be COVID cautious as highlighted areas of life where they'd like to still have some access. They want to be able to safely shop groceries, I want that for them too. But that isn't "back to normal" for me.
This summer the pressures feel larger as even the most cautious people I know have also gone back to normal, and they look at me like I am doing something wrong.
Did they think that after the pandemic, instead of going back to being regularly chronically ill I'd magically go back to being healthy just like them?
Perhaps these years have just been so strenuous that acknowledging the reality that many people have felt burdened by restrictions, that they completely replaced any behavior that comes with being a Housebound (sometimes bedbound) Sick Person with being Terrified of COVID Extreme Avoider of All Things Normal In The World.
That really all the days I spent between March of 2020 and May of 2023 when the Public Health Emergency expired - or April of 2022 when mask mandates were shut down - or maybe even Summer of 2021 when vaccines became widely available - all those days I spent not out in the world were because I was afraid of the world.
Afraid of getting sick.
Afraid of dying.
Not that you know... I was actually just experiencing the daily ins and outs of disabling chronic illness.
I keep seeing these overwhelming looks of disappointment that I don't have plans for this or that, that I don't have a list of places I'd like to explore or restaurants I want to eat at and I am convinced that the only logical explanation is that people have forgotten I'm actually just Sick and because it is so hard to see a healthy looking 25 year old with a whole bright future ahead of them and accept that a multitude of chronic health problems stripped that away from them before they even turned 21... it actually must just be easier to believe I am a COVID conspiracy theorist.
(Full disclosure here I am still COVID cautious to the extremist extent you can visualize.)
But it's gotta be that it's easier to believe I have lost my mind, than to acknowledge that in 2019 my first full year on disability I had an entire month (if one was to combine the hours here and there, not continuous) where I was pain and symptom free, and that those pain and symptoms free days have vanished. Over 2020, that number dropped to 25 cumulative days. 2021 it was cut in half to 12.5 days, why that's about a day each month. 2022, after getting diagnoses and better treatment to sort out other issues, we've gained a few and are up to 15 days.
This year I am on track to have 5 days. 120 total hours of the 8760 hours in a year where I might be graced with a few hours here and there where I am not being limited (moderately to severely) by pain and symptoms. FIVE.
You want me to go back to normal, shit I'd like to go back to normal too. I'd like to have a whole month worth of hours sprinkled across each year where I can sit on the beach, laugh with friends, enjoy a full football game, walk around downtown, peruse my local record store, have a quiet evening listening to music, enjoy coffee outside on the porch or an afternoon curled up with a book.
But even that normal was still pretty damn sick enough to be approved for disability in the first go.
And by now you've all forgotten how much I used to disappoint you in that version of normal.
How you'd be in town for a few days and when you'd call to see me it was one of the many unfortunate days my meds simply didn't work, and I'd have to cancel.
Or how you'd never see me out and about, why didn't you ever see me at the bars and clubs you frequented? You decided it was because I didn't want to see you, remember?
Why did I always leave your place so early?
Why wouldn't I meet you for a quick meal?
And now, now why won't I make a special trip to where ever you live? Why won't I spend my savings to *checks notes* travel someplace to see someone who isn't interested in doing anything a sick person can do... And why can't I make a trip back home every year?
(Like hello it is not my first choice to be on disability, but it's the choice I have and $900 a month is... not a lot of money.)
It's so easy for your normal, if you want to travel you just can! You not caring about the pandemic aside, you can pick up extra shifts so you have more fun money. You can reliably travel on the day you planned. You can drive for hours on end. You can go to the loud concerts and the busy restaurants and you even enjoy the bustle of it all. You can go back to your regularly scheduled life when it's all over and the only thought on your mind is how much you miss it already, not how sick you are for overdoing it.
Your normal involves jobs that pay your bills.
Your normal involves a hundred conversations a day between roommates, the person who makes your coffee, a stranger you bump into, coworkers, customers, your friends who you grab dinner with, the person driving your Lyft home, your neighbors.
My normal? The only people I have conversations with outside of my cell phone are the doctors and nurses I see a handful of times a year. If I am really fortunate, over the last 5 years that this has been my normal, every few months I might have a nice conversation with someone who purchases something on a local buy/sell group.
And so, outside of the few close friends I have who now live thousands of miles away, the only people I speak to are my parents.
Which brings us back to the question, normal for who?
Did you forget that I am spending most of my time asleep, or wishing I was waiting for the pain to be just low enough I can keep myself well nourished and keep my home clean?
I'm sure you think oh it must be so isolating to keep protecting yourself from this virus, but why have you forgotten that COVID could go disappear tomorrow and absolutely nothing in my daily life would change? Why don't you care how isolating it must be to not have treatment that works? To just be sick all the time?
Do you really think it's all because of the pandemic?
Do you really think I don't want to go live my life?
What even is living life to you?
What do you want me to do? Spell it out for me. Really give it to me straight.
Is it really a life you want me to go live, or is this all just one giant justification for the way you're living your life and the way you're superimposing your expectations for yourself onto everyone you think should be in the same place as you?
A.
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