My girlfriend’s idea felt brilliant to me: Put out a call on Facebook for Covid-cautious people in our area to rent a theater together. We could watch the Barbie movie while wearing high-quality masks to keep each other safe.

The plan turned out to be quixotic. No one responded to Sarah’s request.

She scrolled through others’ selfies on social media and saw many people dressed in pink, posing behind cardboard cutouts as though they were Barbie dolls in boxes. She wanted to join the celebration of feminism and the discussions about the movie’s take on gender and other issues.

Given the past few years of isolation — which have no end in sight for us because I am suffering from long Covid — Sarah was desperate to be part of a cultural moment.

It’s been two years since I fell ill with what seemed at first like a mild Covid infection. I got sick in August 2021, at the height of the Delta wave. My illness grew into a chronic condition that left me disabled for more than a year.

Long Covid still ails me.

While most Americans were emerging from their pandemic shelters, we were digging in deeper.

Since then, many folks we relied upon and cared about have moved on without us. Some have shown empathy; others have ghosted us. A few have been judgmental, dishonest and cruel.

There have been moments that feed our need for connection and fill us with gratitude. Some people will meet us outside for conversation, for coffee and meals. A hairdresser masks when Sarah’s coming in and lets her bring an air purifier with her. My daughter’s school community supported us by constructing DIY air cleaners with the help of students and placing them throughout the building.

But those actions are overshadowed by society’s overarching decision to roll the dice when it comes to Covid, to the exclusion of people who have already learned how harmful the virus is for our bodies.

The standard advice public health agencies have for medically fragile people and those who live with them is woefully inadequate. Simply put, society’s resumption of normalcy, like going out to see a summer blockbuster movie, isn’t safe for us.

Doing our best on our own

Sarah used to be a community organizer. I was a journalist.

We once believed we could change the world. Being left behind by a society that won’t keep its most medically vulnerable safe during a global pandemic has shattered that hope. It’s isolated us from people and experiences we considered core to our lives.

We both believe deeply in community; most of that community has left us to fend for ourselves.

At the same time, we’re hardly alone. Estimates of how many people develop long Covid vary widely, but it’s at least millions of people in the United States alone. An estimated 4 million of us have difficulty working or carrying out other daily tasks. Tens of millions of people have this illness or live with people suffering from it.

Many of us are still masking.

We’re measuring carbon dioxide indoors to calculate risk.

We’re testing regularly.

We’re buying commercial air cleaners or building our own. Our house has eight air purifiers running all the time — two commercial units and six that I built.

We are still doing much of our grocery and other shopping online or at off hours to avoid crowds.

We’re leaving behind doctors who won’t mask in our presence. I replaced an acupuncturist who’d treated me for 20 years.

Folks like us skip concerts even though our favorite bands have resumed touring. We wait to watch movies from our couches instead of going to a theater. We order takeout or eat on restaurant patios. Sarah and I recently enjoyed pizza outside a bar while the temperature was nearly 100 degrees. Inside, droves of people breathed in the air others were expelling at a Barbenheimer karaoke event.

Sarah loves karaoke.

I love the social experience of lifting weights surrounded by others at a gym. But these days I work out by myself in our garage, where we’ve assembled a makeshift gym in a tight space.

Even with people who are sensitive to our needs, it’s challenging to turn plans into reality because of the ups and downs in my health. Given that our options are usually outdoors, this summer’s heat wave added difficulty.

Some days the temperature neared 110 degrees.

We and so many like us are doing our best in spite of the reduced access to vaccines, at-home tests and information about the spread of Covid in our communities since President Joe Biden formally declared the public health emergency over. Meanwhile, others are flocking to Taylor Swift concerts in droves and then sharing stories on social media about bringing home Covid.

Sarah and I spend most of our time hanging out with each other and my daughter. My parents join us sometimes.

It’s in that context that Sarah mustered up the courage to hope for a brief moment that people would care enough about her to wear a mask for a movie. It’s in that context that her request went unanswered.

The isolation this illness brings is terrible. But it’s far from the only devastating aspect.

What long Covid has done to me

My memories aren’t always as sharp as they were before I was infected, but this moment is seared in my brain because it scared me: I was lying in bed, getting ready to sleep, when I remembered a quick message I needed to send. I opened the email app on my phone. The two sentences were in my head, but my fingers could not type them.

I was able to speak, so I asked Sarah for help. She took my phone and I dictated the email, which she sent for me.

My executive function has often been impaired. I have a permanent scar on my right index finger from a knife accident while I was cutting up a salad. I’ve broken more dishes since I got Covid than ever before. My handwriting has sometimes been illegible.

I trip more often and severely injured a toe one of those times. I don’t know if a bone was broken or bruised: Like so many other Covid-cautious people, I decided against seeking medical help and risking another infection. My toe took months to heal.

For most of the past two years, I could not have composed the words you’re reading now.

I couldn’t hike or lift weights with the stamina or strength I once had. If I overdid it I’d crash, and I might be bedridden for weeks. I often lacked the physical and mental energy to have even a simple conversation.

My nervous system couldn’t handle all the things it needs to regulate. That had devastating impacts in multiple systems in my body. I suffered from heart palpitations, restless legs and dry eyes at night; my feet swelled and my legs turned red during the day. My digestive system was out of whack. My throat got scratchy and I coughed when I spoke.

I couldn’t sing with the vocal range and volume I had before.

I saw stars if I stood up too quickly.

I lost my sense of smell for months.

I still deal with many of those symptoms daily.

Creating a moment of joy

But my health has improved dramatically in the past several months — thanks largely to an active long Covid community on social media that is crowd-sourcing symptoms and treatments in real time. It was there I discovered that I likely had microclots in my blood and learned about an enzyme, Nattokinase, that led to dramatic improvement in my health.

As I’ve carefully managed every decision in every day and experimented with new treatments, I’ve slowly and steadily improved. It’s a constant struggle. Managing this condition requires an immense amount of tenacity and focus.

For a long time I lacked the presence to notice how lonely Sarah had become.

I was putting my energy into staying alive. Only recently did my brain function improve enough that I could understand the impact of the isolation. It took even longer for me to muster up the physical energy to do something about it.

When no one responded to her Facebook post, I knew I had to make something happen.

The chain theater in our hometown, Las Cruces, was too expensive for us to rent alone. And we’d be sharing air with lots of people seeing other movies. Not ideal.

So I checked with a small theater in a nearby town. The price was affordable. The owner would wear an N95 mask while we were in the building. The theater would be empty the entire day leading up to our arrival.

We could unmask indoors!

We could laugh and eat snacks in a theater like we did in The Before Times. We could do something that we used to love, something I thought we had lost forever.

So on a Friday evening, Sarah and I dressed in pink and drove with my daughter and my parents to Truth or Consequences. It was 100 degrees outside. We found a Mexican restaurant with a cooled outdoor patio and ate a yummy meal. Then we went to the theater.

We took selfies with the pink cardboard cutout. Sarah wore a pink KN95 mask in some photos to match her dress. She took off her mask for others. Her smile was radiant. Even in her masked photos, her eyes are glowing.

Sarah laughed so much. Listening to her had me weeping tears of joy.

It’s been a difficult time for so, so long.

Sarah has been my caretaker and our breadwinner, and she’s been worried about me dying the entire time — all while too many people stopped checking in on her, stopped asking about us, stopped being willing to do the things we needed to share spaces with them. As support has dwindled, the burden she’s carrying has grown.

I don’t expect society to change, to make it easier for us to find the community we need. So we’re seeking creative ways to make new memories, moments of joy to sustain us.

We’ll keep doing that for as long as we can.

This commentary is republished from Source New Mexico, a sister publication of the Kentucky Lantern and part of States Newsroom, a network of news bureaus supported by grants and a coalition of donors as a 501c(3) public charity.?