A MCAS friend

MCAS friends

Despite having a treatable infection, after 62 appointments and emergency room visits, Nicolle resigned to hospice in hopes of getting relief from her tortuous pain. I cried for hours when I realized how close she was to death with no options. Since March, Nicolle has become my irreplaceable best friend who texts me good morning and goodnight every damn day. She is my biggest fan and helps me in every way. I didn’t know what to do, so I wrote:

A MCAS friend

A MCAS friend checks on you more than anyone else, because they know every hour is a new challenge.

A MCAS friend knows which medications you tolerate and when to suggest a rescue dose.

A MCAS friend advocates for you when you want to give up. 

A MCAS friend reminds you you’re amazing, especially when you feel inadequate because you’re comparing yourself to everyone else.

A MCAS friend does not shy away from your most gruesome symptoms.  They may even one-up you for the sake of levity.

A MCAS friend know how to make you laugh even when you’re delirious. 

A MCAS friend makes plans with you to change the world, even though you’ve never met.

***

Nicolle read it and messaged me a bunch of heart emojis. And then she said: 

“I hope some of that applies to me, and is not just a wish list for your replacement friend.”

I laughed so hard at her perfect joke soothing me through her own death. And then realized I cannot lose Nicolle. Not now. Not over a fucking treatable infection. 

I had never met Nicolle in person, but at 2 a.m. I drove an hour to her house, canceled her hospice, and did everything in my power to demand her care.

For more details on what happened, read the updates on Nicolle’s GoFundMe. Basically, Nicolle almost died right in front of me in the ER. She was screaming and hallucinating with a temperature of 105.2F. Through it all, Nicolle checked to make sure I was taking my medications and drinking water every hour. 

Today, Nicole was discharged with negative blood cultures and a new PICC line. We are completely exhausted, traumatized, and forever changed, but I am so happy to have my best friend still in my life.

I am continuing to write because it is healing and Nicolle always encourages me to continue my advocacy efforts. She’s always been the biggest supporter of my work. Next week I am launching a monthly email and I hope you will sign up. I truly believe this is the beginning of big change, and I look forward to sharing this journey with you.

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.