Handwriting is overrated

“How’s your handwriting?” she asked. I’m seeing a new MCAS specialist and she is digging into every area of my life.

Even my deepest, darkest, writerly secrets. 

“Uh, not great,” I said, thinking of the bottom cabinet drawer in my kitchen. The one I never open. A rash began to prickle along the right side of my neck. 

“Can you give me a handwriting sample?” she asked.

I stretched my hand, picked up a black pen, and wrote the following:

This handwriting test is significantly more comfortable than skin biopsies or brain swabs, less nerve-racking than a blood draw, and certainly less disgusting than harvesting a poop sample. However, as my hand starts to cramp, I would argue a pee test is easiest. 

Although my service dog may disagree. 

While Sancho is a master at the bathroom stall tuck, I struggle to maneuver my body gracefully in cramped places. I am stunned when clinics do not have ADA compliant bathrooms, let alone expect me to collect a sample in a space smaller than a bathtub. My unsteady hands do not discriminate between water, precious coffee, or in this case, urine. Just ask my sometimes pee sprinkled poodle.

So, I suppose you have a valid reason for this test.

On a scale of 1-10, I want to cut my hand off now, because it’s cramping and shaky. 

Keeya's handwriting sample
My handwriting sample

*****

I started journaling at age 7, when my grandma gave me a diary for Christmas. From then on, I knew I wanted to be a writer. However, it took several decades to realize I’m a humor writer.

Picture of Keeya's 1994 journal
December 6, 1994: “Today I desided to be a writer. I am a good speller…”

Aspiring writers are quickly taught the benefits of handwriting. A pen and paper help us access our feelings and unleash creativity. There’s even science to back it up. Julia Cameron, author of The Artist’s Way, goes so far as to say, “Writing by computer is a more shallow practice.” 

My journals are my most prized possession. I have at least one for every year of my childhood, preserving my best stories. However, as I got older, handwriting became more difficult. I struggled to focus on my story as the ache in my hand became unbearable. Eventually, I got a laptop, but guilt reminded me I should be filling notebooks.

When I was diagnosed with MCAS, I stopped arguing with my body. I assumed my mast cells were causing the weakness in my hands. Handwriting was unnecessarily hard with keyboards and dictation so readily available. I accepted my disability. Kind of. 

I stopped handwriting, but I kept buying notebooks. Lots of notebooks: standard size spirals, pocket pads, designer bound journals. I stuffed them into the bottom drawer of my kitchen until they weighed so much the drawer almost broke.

Picture of 37 notebooks of various size and two toy sized poodles
So many empty notebooks.
Photo of two notebooks made from vintage books
To be fair, some were gifts from friends with equally morbid senses of humor.

I’m still clinging onto an image of what a writer should look like, but this is definitely not it.

*****

As soon as I finished my writing sample, I chucked my pen across the table. My hand throbbed for at least 20 minutes. I sent my specialist a picture of the page.

“It looks good!” she responded encouragingly. She is more worried about my tremors and imbalance. I should be too, but right now I’m disappointed she didn’t definitively ban me from notebooks like she banned me from gluten. That would be so much easier than facing my feelings.

I know in my heart, or at least my hand, this is the end of The Drawer of Empty Pages.

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 to 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!