Out Living It Day | Saturday, July 27

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Onward and Upward

By: Therese "Janeway" O'Hara

To understand how First Descents changed my life, you have to go back to the beginning…

I was diagnosed with multiple sclerosis during the 2018 holiday season, while my husband was simultaneously undergoing open heart surgery to replace his aortic valve and bypass three of his blocked arteries. At the time, I had gone completely blind in one eye and was beginning to experience muscle spasms and what I can only define as the absolute worst pain of my life.  After long periods of waiting on doctors appointments and insurance approvals, I eventually received my diagnosis: multiple sclerosis. Together, my husband and I stumbled our way through the end of 2018.

MS makes you feel like an outsider in your own body. One day you wake up and can’t see out of your eye. You go to get up, only to find your legs won’t move. Or you can’t feel your hands. Or you have to cross a sea of metaphorical razor blades under your bare feet when you walk. When I was diagnosed, thoughts and questions consumed me: Who is this person that I’ve become? How did I go from running marathons to crawling from the couch to the bed? Will it get worse? Please, don’t let it get worse.

MS makes you feel like an outsider in your own body.

Each day brings new symptoms to manage and learn, constantly testing your limits and resolve. Being active requires a complete rewiring of the brain. As a former collegiate athlete, I’m hard-wired to push my body to its limit and not accept anything but a win. But after my MS diagnosis, my benchmarks for winning had to change. Now, trying something new, learning and exploring my new limits and boundaries, and engaging in any level of activity is a win for me. 

 Once I received my diagnosis, I immersed myself, wanting to learn as much as I could about MS, the actions that I could take to improve my situation, and how to become my own advocate. I subscribed to every MS newsletter and community I could find, which led me to First Descents. A simple article in a Can-Do MS newsletter seemed too good to be true. An all-inclusive outdoor experience tailored for multiple sclerosis warriors like me? And it’s zero cost?

 I hesitated for maybe a whole minute before signing up, having no idea if I could even do these activities that I once loved and sought out. Then, one magical day, I got an email that a spot had opened up to participate in a rock climbing program in Estes Park, Colorado…the very next week. Again, I hesitated. Can I do it? My “alien” body has a mind of its own and since my diagnosis it has risen up against me whenever I’ve challenged it physically. Will it be awkward? I’m introverted and shy, especially in new situations. Will MS ruin the experience? I can go from thriving to barely surviving with new situations, overstimulation, and over exertion.

I had no idea what to expect when first arriving in Colorado. But, I knew one thing. I was going to do everything I could to make the most out of the week, regardless of my physical abilities each day. This was going to be my first opportunity to interact with fellow young adults living with MS outside of my family. My sister was diagnosed two years after me. I suspected it was MS, but I hesitated in telling her my assumptions. Looking back, I think she saw the writing on the wall and knew the inevitable diagnosis was coming. I’m fortunate that we have each other, but many are alone in this fight. I now look at any opportunity to get involved with the MS community as a must; if not for me, then for my sister. 

All my worries quickly dissipated after I arrived, because First Descents knows what the heck they’re doing – from the incredible guides and outfitters, nutrient-rich foods, nightly campfires, amazing volunteers, and everything in between, FD sets its participants up for success.  

My inspiration for the week was Captain Kathryn Janeway of the USS Voyager from the Star Trek: Voyager series. The first female captain of the franchise, she captained her crew while it was lost in the Delta Quadrant on the other side of the galaxy, always maintaining poise, strength, compassion, and a determination to get the job done. The ultimate badass in my opinion. My goal was to embody her character during the week, so I quickly took on the nickname Janeway.

 Before I left home, I accepted that I may not be able to physically participate each day depending on what my body dictated, but I could emotionally participate no matter what. I challenged my body in the early days of my diagnosis because I didn’t want to accept the physical changes MS would dictate for me. I’d take the dogs out for a walk and struggle to make it home. I’d roll my eyes at a doctor’s suggested 10 minutes on the bike and do 30, only to have uncontrollable spasms and pain afterwards. All those years of being a competitive athlete, and now I can’t even stand for 5 minutes without needing to sit. My confidence wavered, the pain humbled me, the spasms embarrassed me – I was an outsider in my own body. I was afraid that I’d push myself too hard on the first day in Estes Park and ruin my physical capabilities for the rest of the week.

That woman from years past is still in there. She’s just been looking for a way to get out. 

But by the end of my Program, I had rock climbed each day and chose when I was physically ready to stop, even if it was in the middle of a climb. That alone was monumental, because I’ve always seen stopping before the finish line as a failure, beating myself up in the process. But over the course of the week, I learned and accepted when it was time to transition from athlete to cheerleader to support and encourage other participants as they finished their own climbs. I rediscovered my coaching/teaching voice, blasting it through the craggy terrain for anyone and everyone. Laying in the shade or soaking my feet in the cold stream nearby as I yelled and whooped at the ones still climbing broke down the walls and layers I had built up since my diagnosis. That woman from years past is still in there. She’s just been looking for a way to get out.

Our mantra that week became I got you. We were all scared or timid in our own way. But, we all leaned in, realizing that we could find strength in one another. You need a belay on the end of the rope? I got you. You need a “Wild Bill” (hefty pull on the rope to give the climber a boost, aptly named after one of our FD leaders) to make it past that obstacle? I got you. You need a buddy for your hundredth bathroom break of the day? I got you. No matter the need – I got you. It was empowering to feel like I was helping others and myself reach our goals each day through the power of community. 

Looking back, sitting on the front porch of our lodge to talk with fellow participants and volunteers on that first day was magical. I felt myself come alive, remembering just how much I love being outdoors. 

Therese let her MS diagnosis control her life. But Janeway is committed to finding daily ways to embrace adventure and keep Out Living It because multiple sclerosis is not all of me, but just a small part of me. Before First Descents, I thought climbing and outdoor adventures were behind me, but now I realize they’ve only just begun.

Give the Gift of Adventure

At First Descents, we empower participants to embrace a life of adventure and encourage them to climb, paddle, and surf beyond their diagnosis, reclaim their lives, and connect with others doing the same. This holiday season, our goal is to raise $150,000 to fund transformative adventures for 60 young adults impacted by cancer and MS, healthcare workers, and caregivers in 2023.  Give the gift of adventure and donate today at support.firstdescents.org/giveadventure.

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1 thought on “Onward and Upward”

  1. Thank you FD for reigniting something special in our daughter. You taught her to believe in herself and her body again. Her experience there along with the amazing staff and other MS Warriors brought her new found confidence in herself since her MS Diagnosis. I will be forever grateful.

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