Five Years in with COVID, I'm Getting Better with the Help of the Community/Creator Internet

Long COVID is real. Consistent lifestyle changes help me control it. The internet is helping, too!

This weekend was the five-year anniversary of the day I woke up from a medically-induced coma.

The wonderful doctors at NYU Langone took that dramatic approach because I had an acute, traumatic infection with COVID-19 in March 2020 and was spiking a 107 fever. I showed up at the hospital with 79% blood oxygen -- going below 95% is considered concerning; below 90% is deeply troubling. My lungs were overwhelmed. I was literally choking to death. I was intubated, put on a ventilator, & ECMO machine.

On April 12, 2020, I woke from a nearly three-week sleep filled with lucid, vivid dreams. My mind moved through memories of loved ones and grappled with questions of existence while an army of care providers tended to my bed-bound body with expert experimental care.

As my consciousness returned, I felt so grateful to be alive and wanted to rush back to normalcy. I told myself that I could do good in the world through my work as a journalist at mission-driven media organizations like NPR and the Washington Post.

So I spent the following weeks, months and years trying to prove that I was better. I returned to work at a time when I still needed naps to get through most days. I changed jobs and asked for a couch in my office -- which helped, tremendously!

Troubles were in the past, I would tell myself and all of the friends and colleagues who asked. I’m a proud first-generation American, raised to appreciate the global events that flung our family across an ocean. How could I not move forward, too?

So I never took the time for myself to get healthy. I was too busy trying to already be there. I was putting all of my energy into ambitious work and being a good and appreciative parent, husband and son.

But I still needed those naps to function. My body felt limited and it hurt to move certain ways.

Getting Better

A year ago, an opportunity emerged to leave work and invest my time towards being well.

I set out to improve baseline health while zeroing in on what levers I could pull to control what I know to be my Long Covid (LC) symptoms -- (1) joint pain, (2) brain fog and (3) chronic fatigue.

That led to lifting heavy weights, eating healthier, dropping alcohol, moderating caffeine and getting super into cold plunges - that last one has been particularly helpful to conquer the inflammation that exacerbated my joint pain which, after five years, is nearly non-existent.

I used to mitigate brain fog and chronic fatigue with breathing exercises and laying down. Now I keep them far away with a lifestyle that prioritizes balanced nutrition, regular physical exertion and maximizing restorative sleep.

I've been intentional about my relationships with the screens and humans in my life and making sure that the former are ALWAYS in service of the latter.

I used to stare at Chartbeat to make my newsroom’s audience numbers go up.

Now I glance at my Garmin watch to chase my own peak cognitive performance.

Helped by individuals and community

The baseline health improvements have been noticeable.

Recently I had a battery of tests after some mysterious headaches. Specialists and nurses would give me surprised reactions that my resting heart rate (51 bpm) is so low these days. Are you an athlete? I was asked a few times. Kinda. I would say. I'm working to get in the best shape I can to fight Long Covid.

The actor Rob McElhenney has this great meme’y social post from when he gained and lost a bunch of weight for an arc in his show, It’s Always Sunny in Philadelphia.

I ….don’t look like Rob. And I’m not doing all these things on a Hollywood budget or timeline. But I’ve developed my own version, with the help of the internet.

• I’m in Instagram and WhatsApp broadcast channels created by fitness influencers who share programs and encourage each other with mantras.

• I subscribe to the Substacks of many thoughtful science communicators talking about neurology, cardiology, and mindfulness.

• And I’m using my DMs and group chats (the realest corners of the social internet!) to share recipes, fitness memes and wellness links. We celebrate milestones or simply showing up.

Institutions can only do so much

A part of my experience is that institutions, alone, couldn't help me.

Look, I wouldn't be alive if a world-class team of experts at NYU Langone Hospital in March 2020 hadn’t taken me into a cohort that was sedated for 24/7 care and experimental treatment while my body healed.

In the years that followed, I’ve worked with caring doctors, nurses, and therapists on a variety of ailments. Their work is possible because of the wider advancements across the scientific medical community at institutions across the globe.

And yet … there's A LOT we don’t know. The clinical field is filled with gaps. I've been a part of two Long Covid clinics that quietly closed down even while mission-driven care providers were doing whatever they could to support.

Long Covid is REAL but not really well understood

Here's what I've learned from being among 'the longest of the long haulers'

1) Community validates and heals. For five years, I’ve been a member of the subreddits and Facebook Groups for Long Covid survivors.I’ve followed the hashtags from Twitter to X, Bluesky, Threads, and Mastodon. Other LC folks led me to focus on inflammation and baseline fitness. And I’ve tried to be supportive of LC and chronic illness folks grappling on their own journeys who feel less progress. It's frustrating because …

2) There are no silver bullets. Medical research takes time. Individuals have our own underlying conditions. Clinicians are simply outgunned. But there are a lot of adjacent armories to draw from. And it’s on each patient to find the right mix of care providers and community to armor-up. Personally, I find myself drawn to the Lyme and ME/CFS communities because of the intersectionality of fatigue and array of strange symptoms.

3) The internet can help, but it takes intentional work to bend it that way. For a few decades now, we’ve all had access to the world's knowledge in our pockets. And we’ve all experienced our screens prey on the dopamine-fueled instincts to entertain/distract towards an infinite scroll of engagement. It takes intentional work to alter our digital habits - with screen limitation apps or Notes/Notion checklists, etc. - to employ our devices to pursue the outcomes we want in real life.

The common thread throughout: Humans helping humans with ideas, evidence, and empathy.

A better way forward

Five years in with Long Covid. Maybe it's a lifetime thing. We don’t know.

But I do know that seeking to get better is universal. Chronic illness impacts 129 million Americans. Even more of us will spend time as caregivers for loved ones.

As a journalist and a media executive, I see my industry rapidly moving towards the larger trend of independent media and creator ecosystems. I’ve been fortunate to have the time to catch this moment, change my media habits and benefit from the expertise of creators and the support of these communities.

I’m looking forward to blogging and building in that direction - using digital media to improve lives in the physical world. More on that to come in this space and others.

I’ve found my frameworks and levers to battle COVID. I’m eager to pay it forward and help others be better too.

Five days after waking up from the coma. And five years in, wearing my ECMO Survivor T-Shirt at the gym.

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