From a chronic diagnosis of Lyme Disease to becoming a published children's book author and now starting her own creative business, Kaitlyn Guay goes above and beyond in exemplifying what it means to live the Chronically Driven lifestyle
The hot asphalt crunched under my feet, pounding rhythmically through the streets of Hartford, Connecticut. It was mile twelve of the ING half-marathon, and I had 1.1 miles to go. The sun beat down and my muscles ached, but I had promised myself I would run the entire race, despite the double brace hugging both sides of my knee like train tracks. Finally, the finish line appeared before me, and I passed under the floating banner, my fists pumping victoriously into the air. I found my fiancé in the crowd, exuberant, exploding with pride. I felt invincible.
Which is why it was so shocking a year later when, mere weeks after our marriage, my body deteriorated so rapidly that I needed help to walk less than five minutes.
Suddenly, I couldn’t stand, couldn’t move without feeling the bone-crushing fatigue pressing me back down. I used to joke that if I was a super hero, gravity would be my arch-enemy.
It felt like the very air around me was crushing me slowly, damaging my will, my identity, and catapulting me into a world of chronic pain. I had been bitten by at least three ticks throughout my life, and had developed chronic Lyme Disease- a tick-borne infection on the auto-immune spectrum that can affect your entire body, from your neurological system to your joints to your eyes. You name it, Lyme does it, and no two people are affected the same.
That, along with multiple tick-borne co-infections and a form of neuropathy brought on by the Lyme called POTS- Postural Orthostatic Tachycardia Syndrome- took me from marathoner to disabled practically overnight. Having POTS meant my blood pressure was dangerously low, and when I tried to stand, it would drop and keep dropping, while my heart beat faster in a vain attempt to push the blood into my tingling limbs. If I tried to keep standing, I would collapse. I couldn’t even take a shower without needing to lie down and recover for hours afterward, so completely weak and debilitated was I.
By the time three years and countless methods of treatment had passed, I was so sick, I became a hermit, unable to leave my home. I carried my phone everywhere, never knowing what symptoms the day would bring, as the always moving Lyme spirochete traversed throughout my body, hitting one place, then another. Bladder. Eyesight. Muscles. Nerves.
It was a Molotov cocktail of ever-changing symptoms, and the fear of what would come next was crippling.
I was under attack, and how I hated my body for betraying me like this, when I had always been so good to it. I mourned the loss of who I was, moving through the stages of grief, until one day, I knew I had to make a change.
So I began working on redefining myself.
No longer was I the marathon runner, the music teacher, the performer. No longer could I push, push, push, throwing my body under the bus to meet deadlines and reach for the uppermost echelon of excellence. I had to learn how I could matter NOW. Just as I was.
Then one day, on a crisp spring morning, I sat down in front of my computer and started writing. It was just a free write; nothing was meant to come of it. But what emerged was a scene so viscerally beautiful, an idea sparked in my brain. I would write this story. A year later, my first YA Fantasy novel, Elements, was born. I woke up excited to work on the next draft, then the next, until eight drafts had gone by, and I felt sure I was getting close. I became fascinated by the elements associated with different gemstones, implementing that knowledge into the amulets my character wore, and soon began my spin-off jewelry line based off the characters in my book, calledElements by Kaitlyn.
One day after completing yet another draft, I sat on the sidewalk outside my apartment, my husband Mark by my side. “If you could wake up tomorrow,” he asked,” and be completely healed, but have to give up your book... would you?” And without thinking, I shot back, “Hell, no!!”
Gasp. Jump back. But that would mean that I’m grateful for this illness.
That this disease that has ravaged my life, taken me to the depths of despair and back, has actually forced me to explore talents and desires I may never have found, had my body stayed healthy.
That’s when everything truly shifted. It’s been a long, slow journey, and I can’t say I’m there yet, but I’ve begun learning how to re-frame and redefine my life’s purpose. I’ve begun looking for the amazing gifts I have to offer the world-- ones that have nothing to do with whether or not my legs work.
I have a gift to give the world. It just took me a long time to strip away all the grief for my old life, my old identity, so that I could see just how much I actually have to give.
Today, I’m putting the final touches on Elements, and readying it for release to agents. I’ve begun selling my jewelry locally, and am in the midst of creating a website to sell online. I’ve written a whimsical, animated children’s book entitled “Once Upon a Lyme” to teach children, teachers, and their parents about Lyme Disease, so that no child has to go through what I have. And I’ve created a blog for other brave souls with who strive to find ways to thrive through chronic illness.
But most of all, as corny as it sounds, I’ve learned how to love myself. Just as I am.
So here’s to all you Chronic Warriors out there. I salute you.