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!

My worst Easter

Growing up, my parents were pretty sloppy about their holidays lies. Mostly, they enjoyed sleeping more than I did. When I was six, I discovered my mom hiding Easter eggs in the backyard just before breakfast. Instead of confronting my parents, I quietly watched from my bedroom window, memorizing each of her hiding spots. I didn’t want to ruin the Easter Bunny for my younger brother, but I also didn’t want him to get any of the eggs.

So, when I mom shook me awake on Easter morning at age 7, I was surprised and suspicious.

“Wake up! Wake up! Come look out the window!” she said, pulling back my covers. At first, it sounded like a trap, but then I remembered it was a holiday and there may be gifts involved. I followed my mom and my brother to the dining room window.

The sun had just started to rise behind the tall evergreens in our backyard.

“Look!” she said. I searched the greenery for the neon eggs I’d been trained to find. “Under the tree!”

A giant white mass stirred under the pine tree. It bounced towards the window and stood up: a seven-foot-tall creature topped with a bulbous head and two wonky ears. It waved at us with its white mitten. My brother and I gasped, but for different reasons. The oversized rabbit slowly turned, without moving its neck, and hopped in a circle with great effort.

The tallest person I knew was my dad. It must be dad, I reassured myself.

Just as I was about to take a deep breath, my dad entered the room and exclaimed, “The Easter Bunny is in our yard!”

My stomach dropped.

“WHO IS THAT?!” I demanded, as my heart pounded. The white monster was facing the window again and waving. Its big, blank eyes followed me as I shrunk behind my mom.

“It’s the Easter bunny!” my parents shouted with pride. My brother grinned and waved back.

“WHO IS THAT?!” I shouted. Grandma and grandpa were too old to play dress up. I couldn’t think of anyone else. The backyard had always been my safe haven.

“It’s the Easter bunny! It’s just hopping through the neighborhood,” my parents said.

“TELL ME!” I shouted with tears welling in my eyes.

This where my parents made their second mistake.

“We don’t know who it is!” they said, finally acknowledging that I was too old to believe in the Easter Bunny. Unfortunately, they did not acknowledge the trauma of being ambushed by a seven foot rabbit regardless of age.

“WHAT DO YOU MEAN YOU DON’T KNOW?!” I screamed.

Several hours later, after it was clear no amount of chocolate could justify the monster strolling through the backyard, my dad confessed the bunny was his co-worker. He definitely thought that would lessen my fears, but here I am, writing about it at age 33. Plus, have you seen Donnie Darko?!

*****

This year, people around the world are spending Easter in isolation due to the pandemic. To be honest, I’m grateful. This is my fifth Easter in isolation due to mast cell disease and I’m tired of inciting pity and discomfort when I tell friends and co-workers that I spent a holiday alone. People assume spending holidays alone is the worst. It’s certainly not my first choice, but I also appreciate my holiday autonomy. I focus on activities I can enjoy, and abandon any traditions I don’t. Most importantly, I am safe from the Easter Bunny. (I shut my shades just in case.)

*****

A few years after the Easter Bunny incident, my parents went out of town. They let me sleep over at a friend’s house. She loved animals as much as I did, but my parents wouldn’t let me have a pet.

When my parents came home from their trip, I met them at the front door with a large hat and wand in my hands.

“I learned a new magic trick while you were gone!” I gleamed. “Abracadabra!”

I waved my wand, reached into the hat, and pulled out a black and white mini lop.

“Isn’t that an awesome magic trick?” I asked my stunned parents. “He’s mine now!”

The karma of bunny magic.

My body pranks me every day

It’s hard to make friends with mast cell disease. Sometimes, work is the only place I get social interaction all week, and even then, I spend most workdays alone in a HEPA filtered office with no windows.

Of course, my personality and service dog are magnetic, so I’ve managed to forge a few relationships on the way to the bathroom. These colleagues have always taken a genuine interest in learning about my illness and disabilities. They make me feel welcomed and supported.

So naturally, I decided to prank them.

My colleagues were blindsided by my trickery, because I told them I was strictly off-limits on April Fool’s Day. My body does not handle pranks well. Any strong emotion, positive or negative, can trigger my mast cells and send me into an allergic tailspin. I declared this publicly last year on March 31, and then went home to craft my prank.

On April 1 at 2 p.m, when brains and tummies begin grumble, I skipped down the hallway, inviting them to my office for a treat.

“I made brownies!” is what they heard. “Gluten free!” I shouted to my co-worker, who can relate to my food sensitivities.

One by one, they followed me to my office, salivating like Pavlov’s dogs. Their eyes immediately located the brownie pan on my desk covered in aluminum foil.

“Help yourself,” I urged them. They eagerly peeled back the foil, revealing a piece of paper on the bottom of the pan lined with brown letter Es.

“Brown Es!” I cackled, as their bellies gurgled with disappointment. Turns out, my colleagues were really hungry that afternoon. For the rest of the day, every time I emerged from my office, I was greeted with a groan. But every groan felt like a gold star.

*****

Later that evening, I had trouble swallowing. My throat had been bugging me all day. It swells and itches frequently from mast cell reactions, so as long as it’s not life-threatening, I try to ignore it. However, if it persists for more than a few hours, I begin to worry it’s a virus.

Eventually, I went to my bathroom mirror and aimed my iPhone flashlight into my mouth, expecting redness and inflammation. On the right side of my throat, there was a glaring white mass partially blocking my airway. I gasped while trying to keep my mouth open.

I have cancer! This whole time I’ve been blaming my mast cells and now I’m dying of cancer! Nobody is going to believe me. What are the chances! How the hell did this go unnoticed?

I began to mentally get my affairs in order. Who will take the poodles? Is it too late to plan their estate? Will I have time to burn my diaries? I turned off the flashlight on my phone and google “white mass throat cancer.”

For the first time in the history of the universe, Google assured me I did not have cancer.

Through hundreds of disturbing photos, Google taught me about another bodily horror: tonsil stones. As if kidney stones and gallstones aren’t enough. Google was less certain whether tonsil stones could be removed at home or not. However, the idea of setting up another appointment with doctor unfamiliar with mast cell disease persuaded me to give it a shot.

I thought the biggest challenge would be avoiding infection. No, the biggest challenge is most definitely not throwing up. I was certain I had eliminated my gag reflex after countless gallons of colonoscopy prep and oral contrast, but every time I tried to gently nudge the stone with the end of a sanitized toothbrush, I gagged. As my tonsil finally released the stone, my stomach released my dinner.

I wish I could say this was a classic case of karma, but my body pranks me almost every day. My mast cells’ favorites include stroke-like migraines, temporary deafness, and the occasional shart. In fact, I even blame my mast cells for the stone through inflammation. (My CSF leak was pretty close to my right tonsil.)

Today, I’m happy to be isolated at home, a safe distance from my co-workers. The Internet says April Fools’ Day is canceled out of respect for the COVID-19 pandemic. I couldn’t agree more. I just hope my mast cells got the memo.