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 video and photos from my road trip, check out my Instagram!

Restless in remission

Keeya standing on a paddleboard making the peace sign

You know that feeling when you decide you’re ready to be discharged from the hospital? Like you’re thankful for all everyone has done, but you’re about to rip out your IV and get the hell out of there? As the nurses finalize the paperwork, you’re sitting on the very edge of the bed, next to your packed bag, prioritizing your to do list. 

It’s been two months since I went into remission from mast cell activation syndrome (MCAS) and I wake up every morning ready to burst out of my condo. When I started this blog, I worried that I would not be able to write posts regularly because of chronic illness. Ironically, writing during remission feels impossible. After spending five years in pain and isolation, I’m not interested in sitting still.

Of course, I never imagined MCAS remission was a possibility for me. I had heard about it, but knew it was rare. Remission doesn’t mean I don’t have MCAS anymore. It means I don’t have the symptoms of MCAS on my current treatment. Please read my tick saga if you haven’t already to learn about how I went into remission and my current treatment.

Since MCAS remission, I have also stopped my dysautonomia medication and my dysautonomia symptoms have disappeared. My resting heart rate has gone from 81 bpm to 69 bpm! I am more active than ever, yet I have not had a single EDS-related injury or subluxation. Before remission, I experienced subluxations about every three days from walking. Clearly, mast cells impact our nervous systems and connective tissues. I hope my remission will encourage more dysautonomia (e.g. POTS) and Ehlers-Danlos syndrome patients to pursue MCAS testing and evaluation.

Everything is brighter, happier, and more amazing. Not only can I do all the things and eat all the things, but I am raving like a kid, soaking in every experience. I am overwhelmed, overjoyed, and a little lost. For the last five years, every hour was dictated by mast cell disease. There were so many rules, many of them conflicting. I had whittled my life to a strict regime dictated by pain, not joy.

I have been so isolated for so long that I just want to scream, “WHAT ARE MY CHOICES?”

In actuality, when I went to the grocery store and faced all the choices, I grabbed avocados, pasta sauce, and ice cream, before running out to avoid a panic attack. I can eat anything I want without rescue medication or feeling like I’m going to birth a demon, but I’ve also learned drinking four margaritas or eating an entire bag of sour cream and onion chips doesn’t make me feel great either. 

My favorite food is cherry tomatoes. I still hide in the corner on my kitchen and binge entire packages like I’m about to get in trouble. Before remission, I would have barfed before getting the second tomato in my mouth, because of histamine. Yet, my stomach pain has disappeared, and I have tapered of Prilosec completely. (Just 8 months ago, I had an endoscopy that showed inflammation and the gastroenterologist said there was nothing more he could do for me.)

Keeya and a big sandwich
I became vegetarian shortly after this sandwich. HA. Part of my spontaneous Florida vacation.

Every day I seek a new adventure. I assumed my muscles would be atrophied from five years of disability, but it appears they mostly just lacked oxygen. I rarely get sore afterwards. I don’t have to worry about one minute of sun or heat making me swell and vomit for the next 24 hours. I have paddled, floated, and swum in lakes, rivers, pools, and the ocean. My daily step average went from 5k to 15k. My cross-training includes weekly running, pickleball, and paddleboard. My lungs have never felt this clear; I have struggled with asthma my entire life. My worst injury has been blisters.

How remission how impacted my ability to compete in agility outdoors

See more photos and videos of my adventures on Instagram.

Several people have asked if I worry about remission ending. I don’t. The end of remission would probably be soul-crushing. No one knows how or when anyone’s MCAS baseline will change or if treatments will stop working. I am still susceptible to trauma, infections, stress, and so many other immune system triggers. Everyone is. But I know I can handle it. 

Fear limits our joy. (And is terrible for our nervous systems.) I have been given an incredible opportunity to experience the world in a way most people cannot appreciate. My gratitude neutralizes any bubbling fears. I’m too busy yelling, “I can see fish!” from my paddleboard.

Take that dysautonomia! Standing alone used to be a nightmare due to dysautonomia.

Related posts

It’s really hard to summarize how extensively MCAS, dysautonomia, and Ehler-Danlos syndrome controlled my life before remission, but here are some old posts and an article to provide perspective.

Disability and film: my experience

Keeya and film crew in Minneapolis

Last week, I watched disability trailblazers lose an Oscar to an octopus. 

“Crip Camp: A Disability Revolution” had been nominated for an Oscar for Best Documentary Feature. The film, streaming on Netflix, is about a summer camp for disabled teenagers and adults, providing awareness and insight about life with disability and the disability rights movement. Undoubtedly, part of what made this documentary so special is its co-director, Jim LeBrecht, who was also one of the disabled campers.

While Crip Camp did not win, it was truly historic to see disability pride on the red carpet at the Oscars. Not only did we see mobility aids and a service dog, but the first ramp at a major awards ceremony, live captioning, and an award presentation in sign language. Of course, accessibility has been required for many years by the Americans with Disabilities Act (ADA), the law championed by many of the disabled campers in the documentary. (In 2019, Ali Stroker was forced to wait alone backstage in case she won a Tony Award (she did) because there was no ramp from the audience to the stage.)

I am so grateful for Crip Camp and its amazing disability activists who are now revolutionizing diversity and inclusion in the film industry. The documentary gives me hope, after my own terrible documentary experience, that although I may continue to face barriers and discrimination, I can continue to have meaningful impact by telling my own story.

One year ago, I was asked to be in a documentary about mast cell activation syndrome. As someone who spends the majority of their free time raising awareness for MCAS, I was incredibly excited at the opportunity. I met the producer and director via video call and they seemed to understand my illness. They had already interviewed well-respected MCAS specialists. 

In addition, they offered free medical care during filming. I shared my appointment notes to help them understand and tell my story. Raising awareness was my number one priority, above my privacy and comfort. I knew filming would be challenging, but I was assured I would receive disability accommodations like a fragrance-free crew, food, and rest after my flight. 

On the first day of filming in Minnesota, I drove to meet the crew near the Mississippi River, parked, and hung my disability placard. I was told the filming location was below the bridge, on the riverbank. When I got to the edge of the riverbank, I saw the stairs were broken and missing and chained off by the city. The crew was waiting and I didn’t want to disappoint them. I told myself it was a mistake, even though both the producer and director had received my medical records citing my dizziness, muscle weakness, and recent history of falling down stairs. 

Clinging to broken pieces of handrails, I staggered down the stairs, while the crew carried my dogs because it was too dangerous for them to walk. By the time filming was done and it was time to head back up the riverbank, my bones, ligaments, and muscles were screaming. The crew had to pull me up the riverbank and push me forward when I began falling backward because my legs were giving out.

Keeya standing at Mississippi River at night
Keeya filming for the MCAS documentary at the Mississippi River

The view certainly was beautiful, not worth the pain and injury to my legs. That’s when I realized “the shot” was valued over my safety. I had to take all my MCAS rescue medications and oxycodone the rest of filming because the pain was so excruciating. 

Throughout filming in Minnesota, I felt pressured to say yes and ignore my pain many times, but I drew the line when filming began to misrepresent my disabilities. I refused to inaccurately portray MCAS. At my office building, I refuse to walk in the front door for “the shot.” I explain I cannot walk in the front door; I never walk in the front door because of the sun, heat, and cold. Every day, I must park in the garage under the building and enter through the tunnel to avoid MCAS reactions. At the State Capitol, I was asked to walk up the stairs in the sun. I felt the tension rise as I offered to stand the bottom stair with an umbrella instead. I regret not having an advocate by my side. 

I was originally promised one day of rest after my flight to Seattle, time to recover from the vibrations and fragrance of the flight, and get my own safe food. Instead, less than 12 hours before my flight, I was told to drive straight to a hotel after landing at the airport for 2 hours of interview questions. Of course, my body revolted from the flight, so I negotiated for time for a shower, medications, and food. Despite my pain, I showed up ready to film at the agreed upon time. I waited a half hour in a lobby that was pumped with fragrance, only to be told they did not have time for me anymore.

The next day, I was criticized for requesting a Mexican Coke after vomiting, because I had maxed out all my rescue medications (including Zofran) and the carbonation and caffeine soothe my stomach. (Three weeks later, an endoscopy showed the erosion of my stomach lining. Not having access to safe food during filming likely contributed vomiting.)

My best friend, Julia, said she’s never seen me cry so hard in 25 years. THAT INCLUDES MIDDLE SCHOOL.

Whenever I raised my disability concerns and needs, the producer threatened to cut me from filming. Makeup was a bigger priority than my disability accommodations. Of course, I am allergic to most makeup.

At one point when I said I was in a lot of pain, I was told, “Good. We want to see your pain!” My pain was ever present, but instead of capturing it in real-time, they forced me to dissociate from my pain in order to get shots in picturesque locations I never visited due to MCAS. Instead of pausing to actually see my pain and allow me to express it, they pushed my body beyond its limits and tried to exploit my pain. 

Two months after filming concluded

My regret outweighed my fear of being cut from the film. I raised my concerns again:

I just want to make sure the scenes of me falling down the stairs and walking up the stairs are not in the movie? I told [the director] and the crew that I am not supposed to do stairs. I have documentation from [one of my doctors] that I shouldn’t do stairs. My visit notes with [another doctor] sent to you and [the director] document how I often lose my balance and fall down stairs. I was still pressured to use the stairs and even to pretend to fall down the stairs. I have pictures of the bruising caused by doing that scene. 

The producer’s response:

[Name redacted] and I have not seen footage of you falling down stairs.

I asked [the director] about you falling down stairs and he had told me you did not but now I don’t know what is true or not.

This project has gone just about too far for me and we are thinking about shutting it down. There may not be a film to be seen. 350K down the drain and no one to see all the effort everyone has placed toward it. 

My goal was to help millions of others around the world who have these debilitating disease but honestly, I can’t take too much more. I’m just about done.

My response:

I’m sorry you feel that way. I’m also disappointed that you don’t believe me when I tell you my concerns. [The director of photography] certainly can attest for filming me falling down the stairs. 

There are thousands of people around the world waiting for this documentary because they know it WILL help millions of people. Filming while my disability accommodations were dismissed was extremely painful for me. But I did it for these people. 

The producer’s response: 

I did believe you and then I spoke with [the director] and he told me it didn’t happen. I have had so much going on with hundreds of different aspects of this film… I’m sorry you fell down the stairs.

My response:

The scene was recreating me falling down the stairs. [The director] asked me to fall down the stairs. I had to fall several times to “get the shot”.

The producer’s response:

This project has become more stressful than I could ever imagine. Due to the stress, we have decided to cancel this project. We’re done.

While I do believe there were other factors involved in the cancellation of the film, a disability accommodation or concern should never be a reason to cancel a film. The accommodation should be provided and the concern should be remedied. Canceling the film within 2.5 hours of raising a disability concern is disability retaliation.

I jeopardized my health, took time off work, and dedicated my finite energy to this documentary because I believed it could help others avoid the pain I’ve endured. Making a documentary may be difficult, but it is no comparison to the life-threatening challenges that people living with MCAS face every day. While my heart is broken that all the work that amazing doctors and patients put into this MCAS documentary will not be shared with the world, I am thankful I do not have to worry about how the information is presented by people who do not understand the disease. 

I continue to learn how to be a better disability advocate for myself. I am embarrassed that I let the fear of losing an opportunity supersede my body’s needs. I am also trying to remind myself supportive opportunities do exist.

Recently, I experienced what it’s like to work with a supportive production crew who wanted to share how disability accommodations allow me to participate and thrive. ESPN not only let me write the script for their narrator to ensure accuracy, but used my video clips. Instead of silencing my voice, they encouraged me:

Thank you for sharing your story with us – we hope we did it some justice and help raise awareness… Best wishes and keep sharing and making memories!!