I'm finally ready to speak.

I am finally ready to speak.

After more than 6 years living in the shadows and reflecting about the state of humanity, I am ready to share my story. Long COVID almost killed me, and it took all I had to get here, to this point where I can sit and focus and put complete thoughts into sentences. I spent years housebound, and several months bed-bound. My recovery has been slow, difficult and expensive – not just on a material level. For a while there I lost all hope that I would ever get to live a "normal" life again. I couldn't sleep more than a couple of hours at a time, and would often be awaken by my legs and/or arms twitching uncontrollably, or my heart accelerating to 175 bpm while lying down, or my body temperature suddenly dropping to 94.7 F degrees and causing me to shiver for six straight hours.

I was constantly exhausted as if I had ran a marathon wearing an armor made of molasses. It hurt to think. It hurt to string words together. It hurt to exist in my body. Light and sound felt too intense, so I rested in the quiet darkness of my bedroom. I couldn't read. I couldn't look at screens. I couldn't listen to music or podcasts. I couldn't do anything to help pass the time. I just had to lie down, breathe and be still. If I tried to stand up, I got dizzy and nauseous and weak. For several months I also had nonstop ringing in my ears (Tinnitus) which almost drove me insane. It felt like my mind was running away from me. I was scared and, for the most part, completely alone.

My partner became my caregiver and did all he could to help me, but he also had to go to work in between grocery runs, cooking, laundry, and accompanying me to medical appointments. I would not have survived without his help. The system failed us both, and all we had left were each other. I went to several doctors and hospitals begging for help, and all I got was a lot of gaslighting and medical bills. My insurance denied as many claims as they could, putting the burden on me, the sick and desperate patient, to fight their decisions. And social services? Don't even get me started on how inhumane and cumbersome our system is for folks trying to access the vital services they need. It's like Survival Olympics. I'd save my energy for days just to be able to endure the numerous phone calls required to move through the endless steps to nowhere. I finally reached a point where I realized I had to choose between applying for disability or surviving -- I simply didn't have energy for both.

I was privileged enough to have modest life savings after 20+ years working in advertising and tech, which means I had the privilege of choice that most people don't have. I thought about that often when I found myself in swampy and crowded waiting rooms as I watched other disabled folks struggling alongside me. I kept thinking how the system should be bringing assistance and care to them in the comfort of their homes instead of making them use what little vitality they have to show up in person just to access benefits.

Social services in the United States are not just pathetic -- they're humiliating and debilitating too. From phone lines that either never answer or feel like an obstacle course to get through to someone, to endless forms with questions strategically written in ways that make a person with two college degrees feel utterly stupid -- the system makes it VERY clear from the get-go that it does not want to help you and that it does not care one iota whether you live or die. I wanted to live, so I chose to use every last cent I had to my name (and then some) to recover my health. I ended up over $33k in debt and almost being evicted after falling behind on rent for over three months. Luckily my father back in Brazil was able to raise some funds so I could stay in my apartment long enough until I got a freelance gig that allowed me to work from home while caring for myself.

Going back to work presented its own unique set of challenges. My body and brain can't function like they used to. I now need quiet morning hours to allow my brain to gently warm up for the day, like a car engine at winter time. If I push too hard, it backfires in the form of headaches, dizziness, ringing in the ears, and/or chronic fatigue for days on end (I learned that the hard way).

I also learned that my body now requires frequent breaks after any type of exertion -- be it physical, mental or emotional. I learned to work in the same rhythm as my heart does, following a cycle of rest, work, rest, work, rest work... The thing is, corporate America has not adjusted to this post-COVID reality and that's why millions of people with Long COVID had to leave the workforce or were forced out. I was able to hold on to a freelance gig for about 18 months, but eventually it just got to be too much. My employer was forcing people back to the office for 2.5 days a week and I refused to put my body through that, not just in terms of exertion, but also in terms of exposure to pathogens that could make me even sicker. I still mask indoors (never stopped since 2020) but being the only one masking at the office did not put the odds in my favor. I asked for accommodations and argued that I had been perfectly able to do my job remotely thus far. They initially let me remain remote, but a few weeks later they hired someone that was willing to come into the office for them, and I was let go. How's that for ADA compliance?

Since then, I've been able to rest and recover from the stress of trying to keep a full-time corporate job while managing my chronic illnesses, which is a full-time job of its own. I have several routines that I need to follow just to stay alive and avoid relapse. Being immunocompromised in a society that decided to use folks like me as sacrificial cows means I have to be extra diligent. Luckily I am in a good place right now and I would like to stay that way. I'd also like to help other people out there still in the throws of Long COVID (as of 2024, an estimated 400 million people worldwide suffer from the disease). And this is where YOU come in. I'd like to make all my Long COVID-related content free to the general public, describing in detail all the steps I took to recover 90% of my health. No affiliate links. No ads. No kick-backs of any kind. Only free information people can actually trust.

In order to do that and still pay rent and buy food, I ask that you please consider subscribing to my platform to support my work. I'll be writing exclusive pieces for my supporters on topics such as keeping hope alive in the polycrisis, building climate resiliency, breaking patterns and healing ancestral trauma, imagining more just and equitable ways of existing as a human... you know, all the light and fluffy topics we've all been sitting with, served with my neurospicy weird humor. I'll also be sharing some poems and visual art here, because that's what I have to offer the world: my creativity and unique perspective as a queer, disabled, autistic, Latinx immigrant who overcame a lot of shit to get where I'm at (thank you, 20+ years of therapy).

The world right now is full of noise and nonsense, and this space will be the antidote to that. Everything here will be done with purpose and intention, and lots and lots of love. So I hope you stick around even if you can't contribute with a paid subscription at this time.

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