Beware of mast sails

I am terrified of sailboats. When I first heard the term “mast cell,” I immediately thought of a sailboat mast and shuddered.

Lake life is arguably the best part of Minnesota summers. Like many Minnesotans, I started swimming lessons as an infant and fishing as soon as I could hold onto a rod. I love motorboats, canoes, and kayaks.

But sailboats give me panic attacks.

Growing up, my family rented a cabin on a lake every summer. The water toys were always a determining factor in our selection process. When I was 10 years old, my mom picked a resort that offered Sunfish sailboat rentals and lessons–a seemingly idyllic family bonding experience.

On the morning of our lesson, the Sunfish looked deceiving cute bobbing near the dock, waving their bright, striped sails. My dad and younger brother selected a red boat, while my mom and I picked a yellow boat. As our instructor began rattling off sailing terms and warnings from his own boat, I was relieved to be paired with my mom, the more cautious parent.

We aimed our bows towards the middle of the lake and the wind whipped the boats to life. Our sails thrashed side to side, threatening to decapitate us. I slid aboard into the safety of the footwell, where I intended to remain the entire lesson. As my mom fought the sail into submission, the thick metal boom swung unpredictably above my head. When had inner tubes lost their novelty?

Somehow, all three boats made it to the center of the lake. My eyes were mostly closed. The instructor announced, “Now we are going to capsize our boats.”

I had not yet learned the swear words necessary to adequately express my shock.

The instructor attempted to explain how getting over the fear of tipping and learning how right the boat is the first step in sailing. He showed us how to stand on the deck, grab the mast, and pull it over the side using the weight of your body. So basically, fall into the water with a boat on your head.

I looked at our row of cabins, small like my brother’s Legos, lining the shore.

“I’m out of here,” I yelled, stood up, and jumped ship.

Luckily, I was wearing a life vest, because my fear of the sailboat somehow outweighed my fear of drowning. I doggy paddled for 40 minutes back to beach, only looking back once. To my horror, I saw my mom dangling from the top of mast like a monkey. Apparently, she didn’t have enough weight to capsize or right the boat alone. Back at the cabin, she blamed me for this, but it only further validated my fear.

*****

When I was diagnosed with mast cell disease, suddenly everything seemed dangerous. My body no longer could discern real threats from healthy pleasures like sunshine, exercise, and joy. Faint fragrances on friends and family became one-way tickets to the emergency room. My own home wasn’t safe enough to coax my body out of fight or flight.

Even the path to healing was dangerous. I never knew if a new food or medication would cut off my vision or inflame my joints so badly that I couldn’t walk. Every mast cell disease patient is different, so there was no guide for cautious treatment. Many doctors refused to treat me because the unpredictability of the disease scared them. However, I knew if I didn’t overcome my fears, I never would get better.

*****

A few days after my “flight” from the sailboat, my dad approached me, “Can I take you out for a very calm ride on the sailboat? We won’t tip and we can stop any time. I promise.”

My thoughts on the sailboat hadn’t changed, but I knew my dad sincerely wanted me to have a good experience. Plus, he actually passed the first sailing lesson, unlike my mom. I reclaimed my place at the bottom of the footwell, while my dad sat confidently behind me with a rope in one hand and the tiller in the other. I gritted my teeth as light wind gently propelled us to the middle of the lake.

“Okay, we’re going to turn. Watch your head,” my dad informed me. I couldn’t physically get my head any lower than it already was, but I appreciated the narration. My dad smiled at me, “See this isn’t so bad.”

It wasn’t bad. If I hadn’t been bracing for death, it may have actually been tranquil. We glided back and forth across the lake for a tolerable amount of time before returning to the dock. My dad steadied the hull and the sail, as I jumped into the water with glee. My mom was proudly waiting for me on the shore. I stood up in waist deep water to shout how brave I’d been.

That’s when my dad lost control of the metal boom, and it blasted me in the back of the head, knocking me out in the water. Luckily, I was wearing a life vest.

My parents no longer ask me to go sailing.

*****

Mast cell disease has taught me healing is not linear and it takes an incredible amount of bravery. Healing is hard, slow, and can even feel counterintuitive. However, you’re allowed to go at your own pace. You’re allowed to declare you’re fucking done with sailboats, or whatever hurt you. Just look for the next tiny step and no matter what happens, know that you are braver than you think.

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]