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!!

A hitchhiker kicked my ass, but I’m temporarily free of MCAS

Poodles in the car

In typical mast cell activation syndrome (MCAS) fashion, the last day of the AKC National Agility Championship was a bit of shock. I try not to set expectations, because it’s impossible to anticipate all the variables that could trigger a MCAS reaction, but still, even after five years of diagnosis, my mast cells surprise me. 

After finishing my run at 10 am and touring the Gilcrease Museum gardens in memory of my grandma, Team Quixote left Tulsa enroute to Kansas City to break up the drive back to Minnesota. By the time we got to a SAFE hotel room, I was delirious with relief, exhaustion, and vanilla.

On Monday, Team Quixote arrived back in Minnesota. I could not wait to wash all my clothes, bathe the dogs, and rest. I began my prednisone taper and Julia returned home, but the excitement continued. On Wednesday, ESPN profiled Quixote and me on the broadcast of the AKC National Agility Championship. On Friday, my local newspaper interviewed me. Read the article.

I felt incredible the entire week, despite completely coming off prednisone. I have said agility is my medicine, but this was suspiciously the easiest prednisone taper I had ever experienced. It was as if I hadn’t tapered at all. 

So when I suddenly felt terrible on Tuesday, nine days after our return home, I assumed it was the prednisone taper. I hopped into bed, accepting my punishment for a successful trip, and turned on some terrible reality TV. My foot itched, so I unrolled my sock to reveal to red bumps. Nothing extraordinary for the MCAS patient, but it kept bothering me, so I pulled off the sock.


I instinctively poked it and that demon just rolled right off because it was so engorged. I screamed, so Sancho tried to eat it, as if that would save me. Somehow, I managed to slide its fat, gray body into an empty pill bottle, secure the lid extra good, put it in the refrigerator, and then shut the refrigerator door extra good. 

I knew nothing about ticks but sometime during my full-blown panic attack I managed to send pictures of it to the TickEncounter at University of Rhode Island. Yes, I had pulled ticks off me at the Gilcrease Museum, but we did tick checks in Kansas City and when we got home. And we had been home for nine days! I did not tell the Unversity of Rhode Island I had been traveling. Luckily, they responded in a couple hours:

“Hmmm….this is an unusual tick for your location; you’ve encountered a nymph Lone Star tick (Amblyomma americanum). This one looks like it was attached and feeding for 2-3 days.”

OKLAHOMA HITCHHIKER! *cue the screaming* 

“You may be interested to learn that Lone Star ticks do not transmit Lyme disease bacteria, but they are aggressive biters and can transmit some other nasty germs. Studies suggest that about 10% of Lone Star ticks may carry Ehrlichia chaffeensis, the germ causing human monocytic ehrlichiosis, and Borrelia lonestari, a non-Lyme disease borrelia. In some people, bites from Lone Star ticks have been associated with development of a condition called STARI (southern tick-associated rash illness–cause unknown), and also development of a curious allergy to red meat.”

ALPHA-GAL ALLERGY?!?!?!!  *more screaming* 

So basically, this nightmare was living with me all week, probably in my shoe. I had no idea that was a possibility. I’ve become accustom to many medical terrors over the last five years, but the horror of an insect visibly feeding on my body for 2-3 days without my knowledge provoke an identity crisis. 

I am clean?!?!?! I know my body?!?! I know I disassociate, but 2-3 days?!?!? I CHANGED MY SOCKS TWICE TODAY.

I considered burning my condo down, but I decided that might be unfair to the other residents. The poodles were fine, probably because they don’t wear shoes in the spring. 

The next morning, I found two more pus-filled lesions on my stomach in addition to the two on my foot and a slight fever began. Luckily, I started compounded doxycycline by the afternoon. On Thursday, two more lesions appeared on my hip, one with a bullseye. The fever continued and a knife-like pain shoot through my right Achilles tendon. By Friday, I could no longer walk on the foot, so I went to urgent care to check my blood, liver, and kidneys, which were fine. 

The inflammation in my right foot tendons spread to my left foot, and I haven’t been able to walk without crying for NINE DAYS. Sleeping is difficult and living alone feels impossible. While my dogs try their best to help, we disagree on basic upkeep like how to wash the dishes.

“I think you are low risk for an Achilles rupture,” my primary care doctor said.

“That’s what they said about my CSF leak,” I replied. 

Even if there was a way to conclusively know which bacteria the Lone Star tick transmitted, doxycycline is the treatment. (My test for ehrlichiosis was negative, but I had already started the antibiotic. I did send the tick in for an autopsy.) I am certain the inflammation is related to hEDS, and doxycycline helps protect inflammation for damaging connective tissue like tendons. Doxycycline also inhibits mast cells, which is interesting because…

My MCAS appears to be in remission.

Many MCAS patients experience less MCAS symptoms when their immune systems are actively fighting an infection or recovering from an injury. I tend to feel my best after a surgery, even without pain medication. I tend to confuse people when I win first place in agility two days after surgery. For me, I have less gastrointestinal pain, my joint glide easier, and my whole body feels lighter, when my immune system is busy.

Now I’m not recommending weekly surgeries or tick bites to control mast cell disease. However, if your MCAS does go in remission, I am recommending jalapeno tamales. So far, I’ve eaten four of them and they weren’t even spicy. Even on prednisone, I normally wouldn’t be able to tolerate a bite. Now, I’m enjoying beans, onions, garlic, tomatillos, jalapeños, and polite pooping 12-14 hours later.

The wildest part is despite my digestive fiesta, for the first time in five year, my geographic tongue has completely healed. Many MCAS patients have smooth, red patches on their tongues, indicating inflammation of the gastrointestinal tract. (Histamine and other inflammatory chemical released by mast cells can destroy the digestive lining.)

I certainly wouldn’t trade tamales for the ability to walk, but I am trying to enjoy them before my world flips again. I am very worried about alpha-gal allergy. Basically, it is an IgE allergy to red meat that can develop 1-3 months after a Lone Star tick bite and mast cell disease is a risk factor. 

All the vegans and vegetarians are like, “Boo-hoo, so you can’t eat red meat. Get over it, murderer.”

MCAS really limits my safe food, but I’m mostly concerned because MCAS also really limits my medications. Right now, the only capsule I tolerate at my compounding pharmacies is made of gelatin. At least two of my medications contain gelatin, and not sure about alternative solutions. Liquids cause more logistical problems, as if I don’t have enough already. I have no idea if/when my medication will cause anaphylaxis.

In short, I’m just waiting to scream, “They’re baaaaccck,” when my mast cells blow up my body. In the meantime, I’m going crawl across my condo and stuff another jalapeño tamale in my face.

May Update

I am still in full remission taking 100mg doxycycline a day, in addition to a basic mix of first line treatment. I can eat and do whatever I want. When I tapered down to 50mg, I started to have symptoms. I also stopped my dysautonomia medication because I no longer have symptoms and my resting heart rate is consistently 71 bpm or lower!

According to a mast cell specialist, a small subset of MCAS patients have also experienced reduced symptoms with doxycycline and there’s research to explain it.

My Lone Star tick test came back negative for the following:

  • Lyme Disease (B. burgdorferi)
  • Relapsing Fever (Relapsing Fever Borrelia)
  • Ehrlichiosis (Ehrlichia and/or Anaplasma)
  • Bartonellosis (Bartonella)
  • Rickettsiosis (Rickettsia)
  • Babesiosis (B. microti and/or B. duncani)

So the two most likely theories for my infection are southern tick-associated rash illness (STARI), or the tick was radioactive and now I am Tickwoman. I’m still not sure if I have alpha-gal allergy because I haven’t eaten meat since going into remission and it may be too soon to check for antibodies.

Be sure to check out my Instagram for videos of my remission adventures!

10/7/21 Update: My Alpha Gal IgE test is negative.

We’re going to be on ESPN2!

Five years ago, I became allergic to exercise. When I ran, or even walked, my throat swelled, my organs screamed from lack of oxygen, and my heart pounded so loud I thought it might explode. I worried I would never be able to compete in agility.

Today, my heart still might explode, but only metaphorically. We did it! Quixote and I not only survived, but enjoyed the AKC National Agility Championship! I may be disabled, and he may be old, but we are athletes!

And we’re going to be on ESPN2 tonight! Quixote and I will be profiled during the airing of the AKC National Agility Championship, starting at 8 PM ET/ 7 PM CT/ 5PM PT. Our segment will run in the 2nd hour, after the 20″ dogs.

In the meantime, if you haven’t already, check out my AKC NAC video series. I will be releasing one more video after the ESPN2 profile. Thank you so much for your incredible support! I certainly couldn’t have done this on my own.