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!

A letter for your members of Congress

Step 1. Read this letter.

Step 2. If you live in the US, find the contact information for the three members of Congress (two U.S. senators and one U.S. representative) that represent you.

Step 3. Copy, paste, and edit this letter. Here’s a Google doc version of the letter. Send it to each of your three members of Congress via U.S. postal mail, email, or webform.

Step 4. Let me know in the comments or on social media who you sent your letters to!


 

Dear [member of Congress], 

I am writing regarding the FDA’s request to remove all ranitidine products (including Zantac) from the market in April 2020. While ranitidine is commonly known as a medication that reduces heartburn discomfort, it is a critical daily antihistamine for people, like me, who have mast cell disease. 

Many mast cell disease patients depend on ranitidine to eat, move, and sleep. Mast cell disease causes excessive release of histamine. Ranitidine is an antihistamine that blocks histamine H2 receptors, which are located throughout the body, including the brain and cardiovascular system. Without an effective H2 blocker, mast cell patients can experience severe allergic reactions including nausea, vomiting, hives, migraine, sleep disruptions, asthma, throat swelling, pulmonary edema, and life-threatening complications. 

For many mast cell patients, the known benefits of taking ranitidine outweigh the potential health risks cited by the FDA. In its April 1, 2020 statement, the FDA announced, “NDMA is a probable human carcinogen (a substance that could cause cancer). In the summer of 2019, the FDA became aware of independent laboratory testing that found NDMA in ranitidine. Low levels of NDMA are commonly ingested in the diet, for example NDMA is present in foods and in water.” If ranitidine’s potential risk is less than common foods, such as bacon and cured cheese, doctors should be allowed to decide whether or not to prescribe ranitidine. There are no known cases of cancer caused by ranitidine.

The FDA seems completely unaware of the impact its actions on mast cell disease patients. While other H2 blockers such as famotidine (Pepcid) and cimetidine (Tagamet) may be effective alternatives for people without mast cell disease, this is uncommon among mast cell disease patients. As a result, mast cell patients are turning to medications, such as steroids and biologics, which have proven health risks.  

The timing of FDA’s actions is alarming. The loss of ranitidine puts unnecessary strain on an already overwhelmed health care system. Furthermore, the FDA’s actions have contributed to drug shortages of famotidine. At the same time, researchers are stockpiling famotidine for COVID-19 clinical trials. Many mast cell patients are struggling to access any (prescription, compounded, or OTC) H2 blocker medication.

Please urge the FDA to reconsider its actions and allow ranitidine to immediately return the prescription market.

Sincerely,

[your first and last name]
[your street address]
[city, state zip code]

 

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.