Your Sick Friend Next Door

I fall sometimes.

I’m pretty good at falling. I usually know when it’s coming by the tunnel vision so I can crumple safely, or slide down a wall. Yesterday, I was sitting on a stool to cook (an adjustment I’ve made to my life that I highly recommend for anyone else with energy issues, it’s really given me my kitchen autonomy back!). By the time I knew it was happening it was too late. I couldn’t call for help, I couldn’t take control.

It’s all ok, don’t worry, I managed to fall in the safest way possible. Nothing bad happened. But it could have.

Every time I have a bad fall we adjust our lives around it.

Since I fell in the shower, I sit to bathe and never shower unless Colin is nearby in case of emergency.

Since I fell on the stairs, I don’t climb them as often anymore and I’m smarter about what items I choose to carry and what I ask Colin to carry for me.

Since I fell off a stool, I guess I won’t sit on stools for longer than an hour anymore.

It’s not fear to adjust my life around my vulnerabilities. It’s not a lack of faith or a weakness to change the way I move in the world in order to protect myself. It’s basic street smarts. It’s an act of “self care” more real than cucumber masks and bubble baths. It’s brave and it’s strong and it’s humble to change my habits to preserve both my own safety and some peace of mind for my loved ones. I sacrifice my freedom for the greater good of preserving my life and lightening the burden Colin bears as a caretaker.

The way people talk about the changes we go through to protect ourselves from Covid boggles my mind because every single person who scoffs, resists, or disdains aggressive life-preserving action in response to a virus that has killed nearly half a million Americans probably also wears a seat belt, baby-proofs their home when they have kids around, and puts a leash on their dog. We take precautions to protect life every day.

I’m willing to confine myself to one floor of my house, take fewer showers, and limit which chairs I use to be safe. I’m also willing to wear a mask and get hella touch-starved to protect us all from Covid. You miss the gym? I get you! I have a condition that causes my joints to slide out of their sockets if I don’t have enough muscle to keep them in place and I haven’t been to the gym in 10 months. Holy joint pain, Batman. It sucks to have your life limited by this virus. I hate it too.

Let me say here, there is a whole range of ways to be safe. There is no one set of rules that broadly applies. Amongst my at-risk friends we have some who never see anyone, some who see others after quarantining and testing, and some who are fine as long as it’s outside with masks. Each person establishes their own system of mitigating risk with mutual honesty about exposure, ventilation, distance, and masks that’s going to be a little bit different. I get that and respect it.

This post in response to arguments that covid isn’t that dangerous so you shouldn’t have to do those things. And to that I say, well, I guess that’s your prerogative.

But some of us don’t have that privilege. Some of us have risks that don’t allow us to pick and choose which sets of data we prefer, and we have to go for the “as safe as possible” route. Every one of you who chooses to take the risk, go to the party, toss the mask because you have found “proof” that covid isn’t that dangerous and allows you to do what you want, makes our lives a little less safe. It says to us that you don’t love or care enough about the high-risk in the population to sacrifice so we can live. Whether you mean it or not, it says to us that you prioritize your personal freedom over the breath in our lungs.

It hurts in a way that is difficult to describe.

In the last year I’d say this type of response to Covid-19 from so many generally healthy people in my life is actually the most difficult thing I’ve been through. Which is saying a lot considering my stomach has been paralyzed since last March and I have been throwing up 5–10x daily for 125 days straight now. As a disabled person, seeing the callus lack of care for people with pre-existing conditions has been heartbreaking. I’ve cried so many tears, even had full-on panic attacks upon opening social media to see people who say they love me posting things about how “only people with pre-existing conditions die of covid so the rest of us shouldn’t have to adjust our lives so much” or politicizing a virus into a Democrat vs Republican issue about personal freedom in order to not have to face that it could Actually Kill Real People and maybe some of the admittedly catastrophic and difficult shutdowns are necessary to Preserve Human Life.

If you’re a healthy young person, you probably won’t die. You’ll probably be fine. So, you have the freedom to chase conspiracy theories, wax political, and go to the Christmas party without consequences.

I bear those consequences. People with heart disease, diabetes, autoimmune disorders, pulmonary fibrosis, on chemo, and a host of other conditions bear the consequences. It’s theoretical to you. To us, it’s life or death. We’re giving up everything to stay alive. Some of us haven’t left our houses once in the 10 months since this started because our lives matter so much to us. How much do they matter to you?

The thing is, this isn’t really new to us in the way it is to those of you who are able-bodied. Some of us need railings even on short staircases. We need handicapped bars in bathrooms and ramps in lieu of stairs. Some of us require captions to watch the movie. A whole lot of us can’t make our own insulin and store bought is fine. We adapt, we adjust, and we find ways to keep living.

For the first time in a major way, you all are having to experience life the way we do every day. You’re living what it feels like to make a major change to your day to day in order to preserve a Human Life. And it’s a squeeze. You don’t like it. It’s extra hard because it’s not for you, it’s for someone else.

We’re all watching though, and your response tells us a lot about how much you care about us. While there is a range of appropriate response to the virus, we’re begging you to err on the side of care for the at-risk over your own personal freedoms.

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Successful life with chronic illness in poetry and prose.

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Amanda Malone

Amanda Malone

Successful life with chronic illness in poetry and prose.

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