How dog agility helps me enjoy life with chronic pain and disability

Agility competitors are encouraged to develop a warm-up routine to prepare themselves and their dogs physically and mentally for the course.

My routine with Quixote looks like this:

  1. I walk into the building with a pocket full of cheese and hope. Quixote heels, smiling and looking up at me with loving adoration as we make our way to the practice jump.
  2. Quixote waits patiently in a sit stay, as I set the jump bar to 8”. I release him, and he sails over the jump and into perfect sit recall. I reward him with a tiny ball of hand-warmed mozzarella. We repeat this four times in each direction.
  3. We move closer to the ring entrance, so I can watch the other dogs, while Quixote runs figure 8s around my legs for pinches of cheese.
  4. I start to feel dizzy, so I sit down even though all the other competitors are standing, and the floor covered in dog hair–I’m allergic to dogs, but I’m more allergic to people. Quixote squares up to me and sneezes in my face.
  5. I worry I’m forgetting the course, so I stand back up to see over the gates. My blood pressure skyrockets. Immediately, I feel like I’m going to pass out and pee my pants, even though I just went the bathroom. I know the penalty for a dog peeing in the ring, but what happens if a human pees in the ring?
  6. I sit back down and Quixote begins barking for attention. “High five, bow, spin,” I tell him, while handing out treats and questioning why I wake up at 6:30 am on Saturdays to get tormented by my immune system, my nervous system and a 10-pound poodle.
  7. I feel like I’m dying. At this point, I’d rather pass out than forget the course, because at least then I might be unconscious and miss the collective gasp and murmur of the spectators. I forget to offer a hand for Quixote’s high fives, so he starts slapping me in the face for treats. I stand back up. 
  8. Quixote turns his back to me and starts smiling and wagging his white pom-pom at other handlers in hopes of better treats and attention. I am reminded that if I don’t focus on him, he’s going to publicly shame me in the ring by pretending I don’t exist.
  9. “Quixote, you’re such a good boy!” I squeal, handing him a treat. My body is screaming, dumping chemicals in my bloodstream, and I know he can smell it. Unlike my service dog, he sometimes acts as if my disease contagious.
  10.  “You’re the BEST boy!” I exclaim, not knowing who I’m trying to convince, and stuff cheese into his mouth until the team before us nears the end of the course.

As I push through the metal gate and enter the ring, I disconnect from my body and focus entirely on his–four shaved paws, two almond eyes, and an eager tail. A deep, electronic voice commands, “GO!” and adrenaline surges through every cell in my body, knowing each foot placement and hand movement counts. As Quixote sails over the 5-foot A-frame and smashes the teeter totter, I race to direct the next obstacle. When I run out of breath to yell commands, I switch to clapping. When my legs weaken, I send him across the ring with an outstretched arm, just like we practice. In that one-minute run, there is no time process my pain or limitations. 

My favorite run with Quixote in 2020. It doesn’t always go this smoothly!

To most spectators, I’m sure I look like the average, non-disabled competitor. They don’t notice my tremoring hands struggling to put the leash on Quixote when our run is done. Or the allergic welts from clapping. They don’t see the rashes from the parking lot sun or the weakness of my arm as I try to open my car door. They don’t see me collapsing on the seat or vomiting on the pavement, as the chemicals from my mast cells strangle my organs. They don’t see me shaking from chills and lying flat, trying to get blood back into my arms and legs.

I’m sure if they saw all that they’d say, “Why the hell do you do that to yourself?”

I compete in agility because overall it makes me feel better. Once the chemicals are dumped in my body and the inflammation has subsided, my body feels more comfortable. I am actually more reactive and injury prone when I don’t participate in agility with rest and accommodations.

More importantly, agility competitions are an immense source of joy and connection in my life. Dogs are amazing painkillers and comedians. Although my toy poodle howls at me when I make an error, the agility community loudly cheers me on no matter what. My agility friends help me move my crate, hold my dog, advocate for fragrance-free bathrooms, and ensure I am safe. They know I can’t stand for briefings and relay important information. They understand I have to save all my energy for those two one-minute runs. When I go home to rest for two days to heal my muscles and joints, I replay the videos of my runs and relive the joy and cheering all over again.

Quixote, me, and his agility title ribbon
Quixote’s first AKC agility title in 2016

My body has changed a lot since I started competing in agility. My disabilities vary day to day. I haven’t overcome my disease; I’ve learned to adapt. My dog doesn’t care. He just wants to have a good time and eat chicken. As much as I love the ribbons, Quixote reminds there is more to life than our accomplishments. 

Some mornings before competitions, my whole body screams. I encourage myself to show up and promise myself I can always go home. I almost always show up in pain. Thanks to accommodations and support, I almost always leave with joy and a happy pup.


Finding Your Range podcast interview with Jeannie Di Bon

Please enjoy my interview with Jeannie Di Bon about living with mast cell activation syndrome (MCAS), Ehlers-Danlos syndrome (EDS), and dysautonomia. In this episode, I explain how I’ve been suffering from these conditions literally since birth, even though I didn’t get diagnosed until age 29. I also share my tips for living with chronic illness, joy of dog agility, and hopes for MCAS, EDS, and dysautonomia patients.

In a world that generally doesn’t understand the challenges and limitations of hypermobility, I have appreciated Jeannie Di Bon’s exercise videos for years. Jeannie herself lives with MCAS and EDS. I believe we need more practitioners and therapists, like Jeannie, who truly understand these diseases and advocate for patients. Learn more about Jeannie Di Bon.

Celebrating 5 years since my MCAS diagnosis

Keeya Quixote and Sancho

Five years ago, on December 22, I was diagnosed with mast cell activation syndrome. 

As I entered the university’s cancer clinic, greeted by Christmas decorations and a volunteer dressed as an elf, I braced for a possible death sentence. For better or worse, my pain and exhaustion numbed my fear. I had spent the entire year unsuccessfully pleading with doctors to help me as I lost my ability to eat, move, think, and sleep. All I knew for sure was my lab work was positive and something was wrong with my mast cells.

Of course, I had never heard of a mast cell and I had to wait for an appointment. One lab test noted, “Systemic mast cell disease is a heterogeneous disorder.” So I googled “systemic mast cell disease.” After reading Mayo Clinic’s page several times, I surmised I had two diagnostic possibilities: systemic mastocytosis or mast cell leukemia. The median survival rate of mast cell leukemia after diagnosis was 6 months. I joined Facebook groups for mastocytosis, where some people briefly mentioned “a newer condition called MCAS,” but nobody could tell me if I was going to die.

Spoiler alert: I’m not dead yet.

While I felt like the most tragic soul on the planet sitting in that cancer clinic waiting room and glaring at the cheerful elf, I know now my diagnosis was arguably a Christmas miracle. I had walked a mere 5 blocks across campus and paid a $35 copay with no awareness that I was seeing a world-leading specialist. I had no idea my diagnosis would explain a lifetime of health challenges literally starting from birth (e.g. anemia, food intolerances, interstitial cystitis).

Thankfully, I also had no idea the ridiculous amounts of science and policy I would need to learn to stay alive. On the five-year anniversary of my MCAS diagnosis, I would like a damn degree.

To my fellow MCAS badasses, I want to say MCAS gets easier. To everyone else, I want you to know every day is a painful nightmare. It is really a combination of both. You collect tools and learn how to adapt.

How I describe the past five years:

  • Year 1: Total destruction and despair
  • Year 2: Renovating my life
  • Year 3: Building a support system
  • Year 4: Survival and self-advocacy
  • Year 5: Dreaming again

For me, 2015 was much harder than 2020. Although MCAS wasn’t a death sentence, it did feel like torture. Every day was painful and treacherous. It felt like no one was willing or able to help me. Isolating wasn’t enough. While I know how lucky I was for receiving a diagnosis, I am certain an earlier diagnosis could have prevented the worst year of my life. This is why I get so upset that affordable MCAS testing and evaluation is no longer available at the university, let alone in Minnesota. At least, there’s a lot more information and support online today.

Today, I celebrate my diagnosis and the healing it has provided through treatments and accommodations. Tomorrow, I continue fighting for access to MCAS testing and treatment.