By: Justin Levesque
Published: Lifelines for Health, Winter 2017
Some things in life never change, like living with severe hemophilia. Treatment options have come and gone and of course, there’s the promise of new therapies on the horizon. But on a fundamental level, I’ll always have these mutated genes to keep me company. It wasn’t until recently though that the perception of my bleeding disorder was turned upside down with the sudden development of a high-titre inhibitor at twenty-five (I’m now thirty-one). Things were really rough those first few years. With lots of bleeds and a dash of emotional defeat, I only exacerbated the impact of my perceived epic misfortune by isolating from others, imposing limitations upon myself, and no longer seeking out life’s great adventures.
It’s a longer story than this space allows but eventually, having an inhibitor (and everything that comes with it) became integrated into everyday life and I got back to sustaining a creative practice of making artworks and photographs. Most photographers dream of the opportunity to travel to remote places and make pictures. While it’s a dream I also shared, I was always deeply worried about my ability to do so; this fear now bigger since I developed an inhibitor.
Last year I came across a “Call For Applicants” to The Arctic Circle artist residency program. The Arctic Circle residency is a highly competitive program that brings together thirty international artists of all disciplines, scientists, architects, and educators who collectively explore remote and fascinating destinations aboard an ice-class Tall Ship and takes place in the international territory of Svalbard, a mountainous Arctic archipelago just 10 degrees from the North Pole. On a whim, I applied thinking the chances were pretty slim. But a few months later, I was beyond stunned to learn of my acceptance and that I was now invited to go north in June 2017.
Of course, I was excited. So excited. And while I still couldn’t believe it, I bombarded myself with questions about the reality of my body in the Arctic: Can someone with a inhibitor go tot heArctic? Should I disclose my disorder to the program beforehand and potentially jeopardize the opportunity? What if the activities are beyond my physical capability but everyone else is doing it? Do I push myself and risk a bleeder catastrophe? Will I miss out on seeing parts of the Arctic landscape if I don’t do every adventure presented to me?
It was about this time that I was encouraged to participate in CHES’s Leverage inhibitor adventure program co-facilitated by GutMonkey at YMCA Camp Collins in the heavily wooded forests of Portland, Oregon. Leverage is described by CHES as, “Introducing a revolutionary, new program for young adults with inhibitors. This 5-day adventure delivers heart-pounding excitement that puts your inner strength to the test! Find out what you’re made of, and develop new skills that can help you become who you want to be.”
It probably sounds silly but I initially declined because “That’s too.. adventurous for someone with an inhibitor.” I’m not sure why my brain was OK with winging it in the Arctic while scoffing at the Pacific Northwest but the absurdity of my rationalization was thankfully pointed out to me. I prepared to fly to Oregon just a few weeks shy before heading North. It was, hands down, the best decision I could have made.
At Leverage, you’re surrounded by other folks with a bleeding disorder and an inhibitor just like you. It couldn’t be more relaxed and no one has to explain why you’re different than a “normal” bleeder. There’s structured adventurous activities (more on that later) and plenty of free time to explore the camp’s beautiful and serene natural environment. To top it off, GutMonkey and CHES’ supportive staff brings truly impactful educational opportunities that speak authentically to the difficulty of the lived bleeder experience and provide new skills and techniques to navigate that Inhib Life.
When it came time for adventure, there was a wide gamut of activities for us to participate in. I don’t use that word lightly, participate. From learning to throw a tomahawk to floating 60 feet in the air (they call it the Flying Squirrel) to rapelling down the side of a building with nothing but open ravine below you, the only thing that mattered was to participate. What I learned was that participation didn’t always mean being the person strapped in or required to use their body in some performative way. Participation was also helping to keep the ropes organized, shouting “You got this!” and just being present for your fellow campers.
If something was too beyond my comfort zone, I was affirmed and supported in my choice to pass on a particular activity. I relearned how to say, “No thanks” and be OK with that choice. No one judged me there but I also realized if anyone did, or rather, if anyone else in the world were to, that it didn’t matter. I was doing what I had to do for me. It was both practice and a practice. I got to try all this “saying no” stuff out, to hear the words coming out of my own mouth and gain comfort in their sound. And further, it was a mindset that developed while at Leverage. To be present in my own body, to pursue and be OK with my own motivations as reconciled with my known limitations. I was asked to push myself within reason but not become some kind of unattainable superhero.
I can’t stress enough how important all of these lessons would become and how often I would think back to this week in the woods while I explored the frozen Arctic Ocean. While some folks hiked every glacier they set their eyes on, I resolved to climb one. While some folks lugged every single piece of heavy gear to shore, I rotated one piece of photo gear for each landing where I could really focus on using that tool. While some folks didn’t think at all about their bodies and found themselves injured and quite sore, I was always listening to my body with an acute awareness to make choices accordingly and with confidence.
Thank you CHES. Thank you GutMonkey. Without Leverage, I’d have been frozen with fear instead of finding myself in the middle of a glacier just shy of the North Pole.