Notes from a Quarantine Expert

Bhavani Esapathi

May 17, 2020

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There's been an influx of content aimed at easing our collective times in quarantine. Some read positively, in the hope that we will be able to feel the sunshine outside soon, others plead with you to acknowledge how challenging and difficult this has been, and a fair number of them provide a general commentary on how life as we know it has ended, even comparing this quarantine period to the five stages of grief.

Before we go any further I must ask you to pause with me here. I will not say any of the above but if you are tired of the chaos this quarantine has brought upon you, I can with a great degree of certainty assure you that I am one of the leading experts at quarantine in the world and I can offer you an alternative. Yes, you heard me right. I am a quarantine expert, or even a prodigy if you will. How and why have you not heard of me before?

Because I belong to a secret group that many of you out there barely even knows exists. We are the chronically ill, the invisible diseases community, the ones who have until now been considered "the other." So let me take this moment to welcome you into our lives. We hope you enjoy it and we hope you remember us long after this crisis has passed, because our lives are not a crisis. They are just as precious and amazing as yours is/could be.

My entire life has been one long stretch of quarantine, with tiny break points filled with anxiety around trying to act like I belong in the regular world. My fond memories of childhood have occurred between four walls of a hospital or, on odd occasion, my bed (again enveloped between four walls) and as a teenager in a coma, then strapped to a bed for months, finally graduating to a wheelchair that could not travel beyond the garden. This meant no school, no friends and no play time with anyone.

Fast forward to my 20s, when work meant sitting alone in front of my computer in the corner of my one-bedroom flat. Trips to the hospitals or doctors were quite welcome because this meant I could catch some fresh air. And more recently I have been spending my time living in hospitals more than usual, unable to work and thus not even able to sit in the corner typing on my computer. (Until now, when I at least get to do this under quarantine - woohoo!).

I am kidding, of course (for the most part). I'm not any fonder of this quarantine than you are, but I am certainly better equipped to deal with this than most people out there. I am pretty sure there are a lot of people like me but we, as a society, have not yet gotten into the habit of listening to minorities. As a result, you may not have come across such strategies or perspectives on living your life as normally as possible regardless of circumstances.

"No volveremos a la normalidad, porque' la normalidad era el problema" - Sebastian Pinera (Chilean President)

You might have seen or heard the above phrase in a tweet or in your newspapers (if you're still getting them), or even as a fleeting thought in your mind. It reads, "We won't get back to normal because normal was the problem." Even though it was initially used during the anti-government protests in Chile, it aptly fits into our current scenario. And trust me, for those of us on the sidelines (the vulnerable group), the normal was never working.

There are numerous political, socio-economical and cultural debates to be had post-Covid. However we can begin at the place where we can greatly make a difference: ourselves.

The Covid situation has briefly allowed everybody to experience the life of a chronically abled human being. I have spent the better part of my professional life trying to communicate these very experiences, and if I don't have a job post-Covid I would be immensely grateful that even the worst things bring with them little rays of sunshine.

I have seen a great many posts by people advocating complacency or giving in to the situation. Posts telling you it's fine if you only managed to get out of bed and watch Netflix today, or that it's perfectly acceptable if you are unable to do what you set out to in the beginning of the day, and my personal nemesis - using capitalism as an excuse to put our feet up because we are too traumatized and paralyzed to deal with the current crisis. Don't get me wrong, I also take issue with those talking about Newton's discoveries during the plague or Shakespeare penning his great classics at about the same time.

So if I can't neither achieve greatness nor can I treat this as a holiday, then what the f*** do I do?

You may wonder what you could possibly do if you can't be the next Newton or Shakespeare or if you can't even manage to get a lousy holiday from all this. But those are not our only options. You cannot use the same narrative that existed pre-Covid and continue to not learn from people like us; the minorities, the ones who didn't make it into prime time, because right now we're all the same. Some of us may be struggling a little bit more or less but all of us are stuck at the exact point of worrying over our health or our loved ones' health, concerned about grocery shopping and toilet paper. You will hate yourself if you do not take the time now to learn about yourself.

Like I said earlier, we, the minorities, the chronically abled community, have long been in this paralyzed state that we collectively acknowledge as COVID-19 now. And we have learned to live with it. We work and sometimes we don't work, we have relationships (we have break-ups, too), we shop, we cook, we eat, we look forward to the sunshine and yes, all the while with a little voice in our heads silently hoping we don't end up (back) in the hospital (again).

This narrative of being a superhero or becoming a loser is something we have long struggled with because that's the narrative that the abled humans have forced us to live by. After wrestling with it for literally my entire life, at some point I grew out of the current state the world is in right now. Everything you're feeling right now, the anxiety, the uncertainty, the crippling fear of losing the only kind of life you've ever known - this is just the beginning. This is a new life, a new world and you cannot do justice to the gift that is your life if you try to cope with this new world using rationales from the world that has passed us by.

I have no doubt that many of you may invent the next breakthrough in history through all of this but I'm not concerned about them, I'm here to talk to those who feel uneasy at the thought of becoming both complacent during these trying times as well as unable to strive to be the next Isaac Newton.

Please be advised this is in no way a guide for those with mental health issues. I have developed this framework having lived in such isolated anxiety for the past three decades and hope someone will be able to benefit from my learnings.

The most common complaint I've heard now (and over the years, mostly from myself) is not having the urge to work as efficiently as you previously could. Since our brains are metaphorically hardwired into the obsolete model of life, we "naturally" believe we should be doing more work than we did before because we don't have the commute anymore and we don't have the everyday distractions such as coworkers or noises in the city. The worst misconception is that since we're staying at home we must be able to work a tiny bit longer should we feel like we can (and let's face it, you always can).

With over two decades of working experience in my pajamas, I can tell you if you continue to aspire to do more at home than at your workspace you will fail, gloriously. You think you don't have the commute, but you also don't have that half hour or 45 minutes of peace to read that book or to catch up on all your emails so that you can dive straight in with the real work once you get to the office. You should be working longer and doing more at home because you're in "the comforts of your own home" but wherever you are, it is still work. It doesn't get any easier, it doesn't get more or less anything just because you're at home. You are still utilizing the same amount of attention that you would lend to this job at any given point in time.

Instead of putting myself in a worse pressure state I merely focus on a particular project for as long as my mind allows me to, which is usually 45minutes to an hour before I need a short break. I usually do easy, simple tasks during another activity like answering emails while commuting or waiting for the food to heat up at home or even with my morning coffee. I am not trying to write a productivity guide -- I'm sure you can find those online -- but if you do want to read more about Chronic Productivity, here's an article I wrote a few years ago.

Stability is not something I have ever been able to rely on, as I'm sure many of you feel right now. Because of that, I don't have a clear morning routine or schedule to share the "magic beans" with you. I have nights when I simply can't fall asleep because my body feels like a bomb exploded inside me despite the numerous opiates I am already on. I can't rely on doing things at the last minute because there is no guarantee I am going to be well enough to sit upright on any given day and there certainly have been many times I thought I was going to enjoy the sunshine and found myself in intensive care by that afternoon. But living in a flux does not mean you need to stop living, which is what I find many people are doing and it deeply hurts me to see masses of people allowing Covid-19 to take over their lives.

Living your life does not have to mean going out to the parks for a barbecue, or going about your day as usual simply because you think you're "invincible" or because you have been told that is what living looks like. If you genuinely need to put your feet up and unwind, please do so but then again don't feel the need to blame Covid-19 for it. Own up to what you really want. Regular lives have been so often dictated by things that are outside our control and for a change, you can now decide what really matters to you.

If I wanted to I could certainly stop doing everything that I do and blame it on my various diagnoses, but that's not the life I want. I didn't wake up one day and have everything magically sorted for me to do anything as I pleased. It took perseverance, resilience and a fuckload of scratching my head looking for answers.

But if you're still hellbent on the hitherto obsolete model of life, let me give you a more relatable anecdote. Every morning it takes me over two hours to nurse my joints to be well enough to get out of bed, and even once I'm up it's quite likely I will spend the day unable to keep any food down. If I am able to go outside I always have to ration my energy regarding what I can and cannot do. So if you are paralyzed by fear of our current unprecedented (God, aren't you tired of seeing this word EVERYWHERE?) situation, at least you're not having to deal with chronic pain and excruciating nausea alongside it. And if you don't think it's fair to make this comparison (I totally agree) then feel free to let go of the obsolete model that wasn't working before anyway and embrace this opportunity to realize a whole new world you weren't privy to before, and who knows - maybe you will discover a whole new you.

Bhavani Esapathi is a writer, speaker & social-tech activist working within the intersections of art, data & health. To find out more about her work you can visit The Invisible Labs or say hello @bhaesa.

Opinions expressed by the author are not necessarily those of WITI.

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