JANUARY 17, 2024
Reclaiming Life After Loss
BEYOND THE PAVEMENT
By Nerissa Dawn Cannon
Nerissa has been active for as long as she can remember, but her diagnosis of Spinal Arthritis and Fibromyalgia forced her to be more creative in her outdoor activities. She started her own Etsy store as well as a pet training and walking business in her rural area of Colorado.
It’s hard to put into words exactly what it feels like to be given your life back after you have suffered a great loss. It never happens in one moment. It never moves in a constant upward direction. Sometimes, you have to go down a little, so you can then go further up. Perhaps the only way to understand that feeling is to experience it for yourself; perhaps there are no words to accurately describe it, but I’m going to try.
“When the people who are supposed to know how to help you can’t figure out your ailment, the world gets even smaller. Without a 100%, sure-fire diagnosis I have been unable to find financial assistance for the mobility and adaptive equipment I need to maintain my active lifestyle. Already having struggled with Mental Illness in the past, I fell into a deep depression.“
I gradually have lost a good deal of my physical abilities. Ever-worsening fatigue, chronic pain, muscle weakness, loss of motor control, and more would be bad enough on its own, but that loss increased when even the doctors had no answers. When the people who are supposed to know how to help you can’t figure out your ailment, the world gets even smaller. Without a 100%, sure-fire diagnosis I have been unable to find financial assistance for the mobility and adaptive equipment I need to maintain my active lifestyle. Already having struggled with Mental Illness in the past, I fell into a deep depression. I tried to hang onto my quality of life, but it kept slipping away like trying to hold water in my cupped hands. I did not want to keep living when I felt I had nothing to live for. That all changed thanks to the folks at GRIT and their Freedom Chair. I knew becoming a “Trailblazer” for GRIT was a long shot because of the same reasons I hadn’t found support in the medical community. I felt I had to at least try, though. Much to my surprise, I was selected to receive a GRIT Freedom Chair and represent their amazing company! After receiving the chair, people around me started noticing a change. I was generally happier and more at peace. I could see much further ahead in my life. I started to become inspired to test the limits of this chair as well as my own limits. I tried to figure out ways to get more involved in adaptive sports. Then, I saw a post about the No Barriers Summit 2016 Scholarship opportunities on GRIT’s Facebook page, and once again, GRIT led me to a place where I continued to find myself.
Similarly to applying for the GRIT Trailblazer Program, I thought it was a shot in the dark that I’d be selected. There are so many incredible people out there who probably deserved the opportunity more than me. However, since the Summit was being held less than a 3-hour drive from where I live, and GRIT would be there hosting a wheelchair hiking clinic, I had to at least attempt it. Much to my surprise and pleasure, I was selected for a full scholarship!
I didn’t completely know what to expect, but I wanted to make the most out of my experience. My Service Dog, Cash, and I attended yoga every day at 7am! I was nervous for the first class because the last time I attempted yoga I had to quit 5 minutes in when a simple downward-dog pose caused an intense 4-hour migraine. But I worried in vain! How incredible it was to be somewhere that didn’t make you conform, but they worked with your ability, focusing on what you CAN do versus what you can’t do. I am still struggling to be grateful for my body and its abilities after I have felt like it’s been attacking me for so long. These yoga sessions were a great icebreaker to help put me in touch with my NOW abilities instead of focusing on what I’ve lost.
The first clinic I attended was one I was the most nervous, yet excited, for: Salsa Dancing! Amy Purdy and her partner Henry Byalikov hosted it. I danced in the “before” life, but mostly it was tap, with a little modern and ballet thrown in (though I wouldn’t call myself a ballerina by a LONG shot!). I missed dancing so much! I knew people could compete in wheelchair ballroom dancing, but I had no idea how to get started, so this was my opportunity! Imagine my surprise when I was one of only TWO wheelchair users in the class, and the only female at that! I just tried to focus on finding a way to feel the music and the movement through my whole body even if I wasn’t using my feet.
“Having a good partner makes all the difference, I can tell you that right now! I wasn’t the sick girl, then! I wasn’t the girl in the wheelchair; I wasn’t the girl with the Service Dog; I was ME! I was me, and I was dancing! I could feel the rhythm through my body; I felt the outside world melt away from the importance of the moment.“
Henry Bialykov eventually came over and grabbed me and we danced! Like REALLY danced! Having a good partner makes all the difference, I can tell you that right now! I wasn’t the sick girl, then! I wasn’t the girl in the wheelchair; I wasn’t the girl with the Service Dog; I was ME! I was me, and I was dancing! I could feel the rhythm through my body; I felt the outside world melt away from the importance of the moment. Words cannot describe how incredible it felt! And when I had the idea of how Henry could dip me and we successfully accomplished that over and over, it was simply the icing on the cake! This clinic added one more point on my quest to rebuild myself: I can still dance!
“Not only was I reclaiming an activity I did in the “before,” I was doing things in ways I had never done them before! I was starting to truly feel that maybe there are things I’ve yet to try that would give me direction, purpose, and fulfillment in life.“
As an avid outdoor enthusiast, I was itching to try adaptive rock climbing! I hadn’t rock climbed since high school, and usually that was mostly ‘hike up to a point and repel down’ (that’s the best way to get down, LOL!). I was nervous because while I can use my legs to a point, they are unreliable. They spasm if they are stationary with even minimal weight bearing for short periods, and sometimes I have to lift them myself to place them in a position where I can stand. But if ever there was a safe place to try and fail, it was No Barriers!
While the rock climbing pushed me and my legs to our limits, I kept going back for another turn up the wall! They told me I was a natural and started talking to me about how I might be classified for competition (something I would have never even considered before). They even set it up so that after I climbed up, I could repel down! Not only was I reclaiming an activity I did in the “before,” I was doing things in ways I had never done them before! I was starting to truly feel that maybe there are things I’ve yet to try that would give me direction, purpose, and fulfillment in life.
“The biggest lesson I took from No Barriers was that no one ever does anything, truly, alone. The greatest things in life are accomplished through teamwork.“
My biggest challenge, though, in this “after” life (“after” meaning after the illness has taken so much of what I knew) is learning to accept help. I’m a fiercely independent individual. I fear being a burden on others. However, the biggest lesson I took from No Barriers was that no one ever does anything, truly, alone. The greatest things in life are accomplished through teamwork. I know it sounds cliché, but it’s true. This truth was most beautifully illustrated on the wheelchair hike with GRIT. A mob of wheelchair users and able-bodied people alike took over that mountain trail! Maybe someone wheeling needed an assist up the hill, but then the able-bodied companions needed to run to keep up on the downhill side! No judgment and no feeling like you were less than any other. The focus was, “How do we get everyone to our destination safely and have fun at the same time!” That’s all that matters!
Getting back to real life after No Barriers was challenging but I was grateful to come home with a most unexpected souvenir: SideStix Forearm Crutches! Because I have the ability to walk some, but not far unsupported, I have been yearning for a pair of these to try out on the more narrow or technical mountain trails that the GRIT chair (amazing as it is) can’t conquer. I met with the makers, they sized a pair for me to try, and then offered them to me to take home! They have been life-changing! With the help of these crutches, I’ve done trails I thought I would never be able to do again! Also, when using them, my recovery time after activity has DRASTICALLY reduced (which means a lot since activity exacerbates my symptoms)! I am pushing myself to limits I thought were long lost to me, and I’m pushing beyond them!
I’m making plans for adventures 2 years from now, when I honestly didn’t think I’d make it another few months. I’m beyond grateful and humbled to every person who has played a role in helping me gain ground on this journey. There are still days when the sun refuses to shine, but I’m just taking things one step at a time, and doing all I can to enjoy the journey. Life’s twists and turns have taken me to incredibly horrible and incredibly beautiful places. And to be honest, I am grateful to be where I am in spite of what I’ve had to go through and the daily struggles I still face. I think my life’s path might take me to places I can’t even fathom right now, and I can’t wait to experience those adventures beyond the horizon!
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