Talk to all the strangers

Zumba class at Pier 62

You don’t just return to normal.

This spring, as people got vaccinated and re-emerged from their homes, the news media began reporting on “re-entry anxiety.”

I rolled my eyes, not because I don’t empathize, rather because I do. Face masks, social isolation, and now re-entry anxiety–I’m a damn trendsetter.

Of course, you’re going to struggle to re-integrate with people that could have killed you, intentionally or not. For the past five years, I isolated myself, because socialization was too dangerous. At worst, people’s fragrance sent me to the emergency room and destroyed my organs. At best, hanging out with even one fragrance-free friend caused me pain and fatigue for 24 hours. I couldn’t grocery shop or spend holidays with my family without jeopardizing my health for FIVE YEARS.

So, when I went into remission in April, I ate all the food, tried all the sports, and soaked in all the sun, but people still made me nervous. 

Psychologists recommend taking small steps to ease back into the world, like exposure therapy.

Of course, I did not listen to the medical professionals. I did not take small steps. I flew across the country.

When I landed in Seattle, my friend called me an Uber, because I didn’t know how. Overcome with joy and anxiety, I shouted to the driver, “This is my first Uber and I’m in remission!” After five years of life-threatening reactions, I’m terrible at small talk, so for the next 20 minutes we discussed the meaning of life.

A friend planned on joining me for Zumba on the pier, but I gave her the wrong time. I put on my neon pink skirt and walked over anyway. Apparently, the skirt was a giveaway, because a woman tapped me on the shoulder, and asked if I was going to Zumba. She introduced herself and we both admitted we were nervous about dancing in public surrounded by cameras. We instituted the buddy system, but the salsa music quickly evaporated our fears.

Keeya and others in a Zumba class on the pier
Photo credit: My new Zumba friend, Julie.

And then I made a lot more Zumba friends. 

Photo credit: We Move To Give, a nonprofit organization founded by licensed Zumba instructors and Sea Mar Community Health Centers volunteers to break the socio-economic barriers to fitness. (SO COOL!)

Apparently, dancing publicly with strangers was invigorating because I cranked out 27K steps (11.5 miles) before bed. 

Keeya holding Sancho overlooking Mount Tahoma
If you look closely, you can see me shooting a rainbow out of my hand. That’s how excited I was.

The next day, I crawled into a van with 8 strangers to spend 12 hours on a mountain. Our guide had a magical skill set–an environmentalist, hospitality host, and a group facilitator. Everyone was incredibly kind, as I hiked the trails sporadically exclaiming, “I’m so happy to be alive!”

After oversharing my remission with another Uber driver, she suggested I celebrate by getting pregnant on my vacation.

“You’re such a good dog mom,” she said.

“What about the father?” I asked.

“You don’t need him,” she said. 

Apparently, this is where I draw the line on new experiences. 

Instead, I drove with friend-of-a-friend I had only met twice to California. A few weeks before, I had heard about her travel plans, so I DM’ed her, “Let me know if you want a road trip buddy.” She’s a total saint for saying yes and we had a great time.

Of course, I saw old friends too. Like my best friend from 4th grade, another friend from 6th grade, and my high school ex-boyfriend‘s sister. (I hope someday you too go into remission so you can have dinner with your high school ex-boyfriend’s sister.)

By the time I made it to Southern California, I was so comfortable in my own body and grateful for the people around me, I didn’t care what people thought. As I l floated on my surfboard waiting to catch a wave, admiring the majestic ocean, I told my instructor, “I wouldn’t mind dying out here.”

“Right on,” he said. 

After my surf lesson, I had lunch with the best kind of stranger of all–another mast cell disease patient, Lisa Cairncross. Stranger, of course, is a bit of a stretch. Like most MCAS patients, we had never met in person, but Lisa has been a kind and generous friend for many years through social media. We shared stories and laughed at jokes that only those with mast cell disease can appreciate. I am hoping to visit her again this winter.

Of course, the trip wasn’t perfect.

  1. I thought that because remission eliminated my vertigo, I would no longer be afraid of heights. So, my friend and I rode Seattle’s ferris wheel. After five years of not crying for lots of barbaric procedures, I almost burst into tears a quarter of the way up. I seriously considered opening the door and jumping into the ocean. Instead, I did what I am trained to do when my body starts reacting inappropriately. I dug into my purse and dry swallowed two Benadryl out of sheer panic. Spoiler alert: Benadryl does not cure ferris wheel phobias either.
  2. We stopped for the night in Southern Oregon, which is closer to Mexico than Minnesota. So, I thought the Mexican food would be better. I ordered the vegetarian nachos. I had to ask my friend to help me identify the vegetables, because it was basically chips, cheese, and guacamole with onions, sliced and diced; squash; zucchini; carrots; and broccoli. No beans. If this is what being vegetarian means, I quit.
  3. I picked the full body wetsuit for my surf lesson, because I was worried I’d be cold (I forget I don’t have dysautonomia anymore). The instructor warned me the full-body wetsuit was a nightmare and he was totally right. My knuckles bled as I tried to drag it up my legs. My friend grabbed both sides and I tried to bounce in. When it finally scraped its way up to my waist, I cheered, but my friend gasped, “Oh my god. Your butt.” My butt blew out the wetsuit cheek to cheek, which I thought was hilarious, since I was wearing a swimming suit. Then my friend informed me my butt was no longer wearing the swimsuit. 

My vacation was amazing because of the people.

For so many years, I would say, “It takes me awhile to warm up to new people.” I considered myself an introvert, but really, I was a raging extrovert stuck in survival mode. When your body is screaming, connection is not a priority. 

When I went into remission, people got excited. I received more attention than when I needed help the most. I was congratulated and praised by people who let me down or hurt me.

The strangest thing happened: I let them be excited. I even made plans with some of them. I guess when the pain left, it took the anger away with it. I stopped holding space for the past and began meeting people where they were. 

So far, the best gift of remission is discovering people aren’t so terrible. (If anything is terrible, it’s chronic pain and illness.) Introvert or extrovert, we all need people–even if it’s just to wriggle us into a wetsuit and tell us our butt crack is showing.

For more photos from my road trip, check out my Instagram!

The doshas of Candyland

Board game

When my new mast cell specialist told me she first trained in Ayurveda, I had no idea what that meant, but I was pretty sure it was a threat to my committed relationship with macaroni and cheese. While I braced for shaming, she asked a million questions–everything from my childhood to diet to sleep to how I like to relax.

“You’re a kapha,” she said, handing me a piece of paper detailing the three Ayurvedic doshas: Kapha, Pitta, and Vata. She explained Ayurveda is the traditional medical system of India and doshas are frameworks for understanding people’s constitutions based on five elements: ether, air, fire, water, and earth. Most people have one predominant dosha, which can provide insight into living a fuller, healthier life. Kapha types are composed of the elements of water and earth, Pitta of fire and water, and Vata air and ether.

I quickly looked to the Kapha column and read: Heavy, slow cold, oily. My face scrunched into a silent WTF, as she continued talking. 

“Some patients have tons of questions, others get overwhelmed and forget easily, but Kapha types need to be pushed and motivated,” she said. “Kapha is slow to learn, but never forgets.”

As someone who takes great pride in my memory, I decided to give her the benefit of the doubt. I figured if she took the time to learn the nuances of mast cell disease, I could at least learn a little about Ayurveda.

The earth and water elements were certainly accurate. In college, I seriously considered majoring in geology, until my professor gave a lecture memorializing her friends who had fallen into volcanoes for science. I like rocks, but I don’t like fire. That day, I decided my major was political science, because I didn’t want to die in a volcano, as if there were no other geological career options. 

******

Me: Why am I so hungry?

Nicolle: End of summer… time to fatten up for winter

Me: Apparently, I’m the overweight dosha in Ayurveda. Kapha, the heavy, oily dosha that watches lots of TV. The TV part upsets me as much as the oily part. 

Nicolle: You’re not going to get fat from one meal!

Me: Kapha types are also good managers, so that’s probably why I have so much couch time

Nicolle: It is ok to watch TV and relax sometimes… probably good for you actually

Me: I’m also soft

Nicolle: Did you take your relaxi taxi?

Me: Yeah, but I don’t feel relaxed. Am I lazy?

Nicolle: Is this real? No, of course you are never lazy.

Me: Ancient India real

Nicolle sends me a link to a Kapha description which reads, “Earth and water are both by nature: dense, heavy, cold, static, and dull.”

Me: NOW I’M DULL?

Nicolle: None of that is you

Me: Maybe my social media dosha is different

Nicolle: I don’t have the mental capacity to learn about this right now

*****

Of course, as a Kapha, I couldn’t forget those descriptors, but it took me awhile to warm up to the concept. I started noticing Kapha aspects throughout my day: how sitting in the woods relaxes me and day naps destroy me. I began paying attention to my strengths and weaknesses, not just my symptoms. Heavy and oily qualities aside, I began to understand myself in a new way. 

I also began calling myself Gloppy. You know the characters from the board game, Candyland? Specifically the 1984 version?

Gloppy bio reads, “Just before you get to the Candy Castle, you’ll pass through the Molasses Swamp, where you just might meet Gloppy. Don’t be afraid, Gloppy might look like a monster, but he’s really a lovable glop of molasses goo. But Gloppy gets very lonely sitting in the swamp all by himself. So, give him a hug and you’ll have a friend forever.”

I’m pretty sure Candyland and ancient Indian medicine are mutually exclusive, but heavy and lovable Gloppy is definitely Kapha predominant. No offense to ancient Sanskrit, but saying “Gloppy” is way more fun. And now I say it A LOT. Especially around six o’clock.

*****

Me: It’s Gloppy time! Kapha is 6-10 AM and PM, Pitta is 10-2 AM and PM, and Vata is 2-6 AM and PM.

Nicolle: So, these are supposed to be your best times of the day?

Me: Yes, which is actually true

Nicolle: What do they suggest you do during the other times?

Me: Lay in the dirt

*****

My specialist loves to say, “Ayurveda is the original personalized genomic medicine.” This didn’t mean much to me at first, but now after several appointments, I understand Ayurveda values the individual patient. Ayurveda is not a one-size-fits-all medical system. It embraces the personalized approach that every MCAS patient dreams of, since every MCAS patient has different needs and triggers. Additionally, Ayurveda not only addresses the patient’s disease, but their whole life. I’m glad to have a doctor with additional training outside of academic medicine, which frankly has caused a lot of harm to mast cell disease patients. It is empowering to be seen as something more than a disease. 

Clearly, I have a lot more to learn about how Ayurveda can support my life, and I’m grateful to have someone to teach me. For more information on Ayuverdic medicine and doshas, check out The Ayurvedic Institute. Also, I highly recommend this Podcast for Healing Neurology episode.

*****

For this blog post, I had to review my messages with Nicolle to quote it accurately. I was reminded once again why I am so glad Nicolle is still alive. She tolerates me.

Here’s to hoping Ayurveda will help with my apparent neuroinflammation!

P.S. Have you signed up for my monthly emails? Every month, I send out email-only content about my latest advocacy work.

7 ways dog gyms are better than human gyms

Toy poodle Quixote at the dog agility gym

Life changing differences I’ve noticed since starting dog agility

  • Peanut butter and cheese are encouraged.
  • The equipment is pretty basic. You know how a tunnel works. There are no weights. 
  • All shapes, sizes, and abilities are welcome–from Chihuahua to Great Dane.
  • No one stares at you in a room full of dogs. 
  • Barking drowns out your heavy breathing. 
  • When you get tired, you can just say, “My dog needs water.”
  • Someone will probably check out your butt, but they are likely a dog. 

Related reading: How dog agility allows me to exercise with mast cell activation syndrome (MCAS), Ehlers Danlos Syndrome (EDS), and dysautonomia