Isolation in the 90s vs. now

At first, I hated Zoom. I love working from home, but the daily video check-ins are soul sucking. Every morning, I struggle to tame my hair, change into a different colored sweatshirt, and make coffee before my 8:30 am Zoom meeting. I have no idea how I used to manage mornings, but I do know it required more drugs. When my meeting starts, I try to think of something different to say than yesterday, but I’m distracted by my clammy face and frizzy bun. Then I examine each of my coworkers and try to determine if they are boycotting morning showers too.

It turns out Zoom is more enjoyable when you use it for fun, and not at 8:30 in the morning. My writing group asked me if I wanted to rejoin now that they are meeting over Zoom. The group had always been accommodating, but the in-person meetings were too physically demanding for my body. Finally, I don’t have to choose between comfort and connection. My only complaint of the meeting was the disruptive poodle who knows when I’m unmuted.

Moderation may be the key to life, but it no longer applies to me. Every day I deny myself simple pleasures to appease my mast cells. The amount of self-control required to stay alive is superhuman. So, when I discover I’m not allergic to something I enjoy, I overindulge. In other words, last month I enrolled in two writer workshops, led a book club, joined two more writing groups, and video chatted with a dozen complete strangers.

“Oh, for Pete’s sake,” my grandma would have exclaimed if she had lived to experience Zoom.

Until now, I never thought of my grandma as disabled or isolated. I just considered her old. Everyone was quick to turn her emphysema into a lesson on why I should never smoke cigarettes. When her breathing got so bad that she couldn’t leave the couch, I just accepted it as her punishment. Besides, I was eight years old and she was my captive audience.

“You made grandma babysit me on hospice?!” I texted my mom last week as I reflected on the horror of being couch-bound in 1995. My mom reminded me my grandpa was there, quiet in the kitchen, but I realized how desperate for company she must have been.

Once a week, I would unpack my toys on the glass coffee table in front of my grandma. She always lay on her left side with one arm resting above her head to relieve her lungs. Our visits began by negotiating the TV schedule, a combination of soap operas, game shows, and Nickelodeon. During my cartoons, she worked on her crossword and word search puzzles stacked next to the couch, alongside her Bible and the latest Danielle Steel novel.

During the day, grandma taught me to read, write, and recite prayers. At night, grandma taught me to gamble. I preferred UNO over the more complicated card games, but grandma didn’t mind. Her handheld electronic poker game was always running out of batteries. Grandma missed the casino so much, she always gave me $5 to bet against her.

At first, we played nicely: she didn’t want to discourage her granddaughter, and I didn’t want to deceive my grandma. However, we had the same sly DNA that inevitably lead to wicked grins and carefully guarded cards. Grandma taught me setting down a winning hand feels like telling a great joke.

“Shit,” my grandma would mutter and toss her cards at me, while I squealed with glee.

Every time I left grandma’s house, with a pocket full of cash, I knew she didn’t have much for company: quiet grandpa, the TV, and the cordless phone. Unfortunately, long distance calling was expensive. Once a month, she’d record herself on audio cassette tapes and send them by mail to her sister in Washington State.

“You’re stealing my oxygen,” my grandma used to say when she needed a break from talking. What I would give to talk to her now, even if by Zoom.

***

P.S. Did you watch my interview with No Labels Live? Let me know if you would like me to do more interviews!

What I miss most

Over a year ago, I had to quit my writing group. Not because they didn’t accommodate my disabilities, but even with accommodations, my body was too tired and painful to go to someone else’s house after work. I almost cried when my groupmates reached out last month and offered to meet over Zoom. Not only did I get to stay at home, but I had energy to enjoy it.

The pandemic continues to create new opportunities for me. This week, encouraged by my writing group experience, I signed up for a virtual writing workshop with one of my favorite authors, Samantha Irby. (Check out her new book, Wow, No Thank You.) The workshop challenged participants with the following prompt: What do you miss from your pre-pandemic life?

My immediate reaction was NOT MUCH.

Do I miss forcing my disabled body into the office every day? Peoples’ disregard for my health and safety? My friends forgetting to check on me due to busy schedules? Inaccessible authors’ events and writing workshops?

Brimming with gratitude and sarcasm, this is what I wrote:

I miss the fear I used to induce when wearing a mask. Before Americans cared about breathing, my N95 declared I was different. In a bad way, of course. I chose a black fabric to discourage any double takes. On the bad days, when my muscles ached with inflammation, I hummed the Imperial March as coworkers and grocery shoppers scurried away. No more wasting energy on small talk or pretending to fit in. Most people worried I was sick or weird–the difference didn’t really matter as long as it didn’t affect them. Only the bravest, people who had been through hard shit too, made direct eye contact and befriended me.

Now that masks are cool, I can’t distinguish the empaths from the assholes. Are they wearing one to protect others too or do they only care about themselves? Worst of all, I’m no longer protected from expectations or criticism. Recently, when I took off my mask in order to load my groceries into my car with adequate oxygen flow, a customer lectured me on the importance of masks. My disability parking permit just doesn’t wield the same power.

Remember me after COVID-19

Dear non-disabled friends, family, and co-workers,

We need to have this talk while your emotions are still raw – while you’re restless and missing your old life; while you’re anxious about your finances; while you’re worried you might die.

This pandemic has been challenging for me, but not in the ways that it is challenging for you. In many ways, I am actually thriving. For the first time in four years, my job is now accessible. My co-workers don’t forget to include me in staff meetings and I don’t have to worry about life-threatening allergic reactions. Without a commute, I finally have enough energy to make dinner every day. My body no longer screams at night.

Many stores that were previously inaccessible to me are now offering curbside pickup and free shipping. Grocers are offering special hours and facilitating social distancing, so I can shop safely. Even my doctor is offering telemedicine. The masks I wear in public are cool now.

The outreach and support I’m receiving is phenomenal. Every day, multiple friends and acquaintances offer their help. They ask me how I am doing and what I’ve been up to. Community members set up a Facebook group to help neighbors like me with errands. Organizations are offering free food, online courses, and mental health resources.

So why I am boiling with resentment?

Because your entire life has changed for the worse and you want to talk about it. You want to vent about the challenges of self-isolation and the fear of illness. You’re struggling to adapt to the uncertainty.

All of your feelings are valid.

But so were mine.

Five years ago, my life was similarly turned upside down by illness. I became confined to about 10 buildings due to severe reactions to fragrances and other chemicals. In other words, no shopping malls, air travel, or dinners with friends.

When I got a disability parking permit, one friend suggested I take advantage of all the places with tough parking. What I really wanted was for her to visit or at least call, but she never did. If she had, she would have realized I could barely walk. I lost many friends because they thought my lifestyle was a choice.

While medical debt threatened my financial stability, I almost lost my job too. My office was not safe, but my manager (at the time) told me working from home wasn’t feasible. After months of stressful HR meetings and medical documentation, I convinced my manager to allow me to work from home one day per week, even though I needed more. It has not caused any performance issues in the past four years.

I will never forget my first birthday in isolation, the year I didn’t receive a single card and no one visited. When I needed support the most, people forgot me. People argued that if I wanted to be included I would need to lower my accommodation expectations. Sometimes it’s just easier to spend Christmas alone.

This pandemic not only validated my grief, but confirmed that I’ve been unnecessarily suffering, because people were unwilling to adapt.

I finally feel like I belong in society, and I fear that will be taken away. I feel an urgency to share my story and build empathy. My body depends on it.

How can we use these terrible experiences to build a kinder world together?

I know we are capable.