From The Adirondack News..".Megan Czaja's Journey" (from the Berkshires to the Beyond...a friend of many in my circles)

It's been said that you can never climb the same mountain twice, not even in memory. Memory rebuilds the mountain just as quickly as the elements alter the landscape in the physical world. For 37-year-old Megan Czaja, a clinical social worker from the Berkshires, the memories of the mountains, and the time she spent exploring them with friends, were the lessons she needed at a time in her life when she needed them most.

Megan Czaja was an avid hiker who tried to spend as much time as she could in the mountains. In February of 2021, Megan began experiencing back pain which she attributed to overdoing a workout. She spoke to her doctor who advised her to visit the emergency room. The source of her pain was initially thought to be a kidney stone. She had a hike planned for the weekend, and while the pain was nagging, it didn’t seem serious, until the next morning when she lost the use of her right leg. She canceled the hike and sought specialized medical attention. She wouldn’t return home for 3 months. Being confined to a hospital room was tough for someone who lived a life in search of wild and open spaces. In the span of one month, Megan went from standing solo on the summit of Mount Marcy to being diagnosed with cancer and losing the ability to walk.

Tests revealed that Megan had a swollen spinal cord accompanied by a small tumor. The diagnosis was a grade IV glioblastoma, usually found in the brain, on her spinal cord. Glioblastoma is an aggressive type of cancer that can occur in the brain or spinal cord that forms from cells called astrocytes that support nerve cells. Only 0.2% of Glioblastoma are in the spine. As a result of the tumor’s placement, Megan lost the ability to walk.

On some of the better days in the hospital, Megan would ask to be brought outside to smell the fresh air, touch the trees, and feel the sunshine on her face. Despite the best medical care, the cancer continued to grow and Megan became completely paralyzed. Megan eventually returned home to a world completely changed, but she never stopped thinking about the mountains.

Megan chose the Berkshires as a home for her career and the easy access to the beauty of New England and the mountains of Massachusetts and New York, making many ascents of Monument Mountain, the 1,642 peak overlooking the Housatonic River Valley in Great Barrington, Massachusetts. The mountain served as a muse for literary giants like Nathaniel Hawthorne and Herman Melville. It was a life spent outdoors. But the Adirondacks were her special place. She was 14 mountains shy of her 46er patch when she was diagnosed. Megan was the kind of hiker that sought out out-of-the-way places of the park, taking back roads and bushwalking the Dix range to see things most hikers don’t get to see. For her, the journey was the destination.

In February of 2021, shortly after her diagnosis, she wrote this update on her GoFundMe page: “I cry for the ability to walk, I miss my constant energy. I cry for the mountains, the physical challenge, and the sense of complete safety when I gaze across the vastness of the wilderness. I’ve found some of that feeling within myself and in other ways. It is not the same and there is something within my heart that knows I will be on a summit again before I die. I don’t know how I will get there but it will happen.” For her, losing access to the places she loved hit her hard.

Before her diagnosis, Megan was a clinical social worker and director of a therapeutic boarding school. She helped people but wasn’t especially good at accepting help herself. When she was no longer able to work, the school closed, but the students, their families, and others stood by her lending love and support, helping raise money for the specialty chair that would bring her back to the mountains. The fundraiser was organized by her former school counselor with the support of her students and their families. The effort made a profound impact on Megan.

Recently, Megan was able to return to the place she loves so much, in a purpose-built Grit Freedom Chair, pushed from the South Meadow to Marcy Dam. Her hiking partners, Forrest Crooks and John Thuener, who used to hike with her side-by-side, up some of the highest peaks in New York state, pushed her. She now says they are climbing a different kind of mountain.

For Megan, it was like coming home again, to a sacred place. Going back to the Dam “felt like a dream. To see that view again, to feel alive. It felt like the cancer wasn’t in control, that I was.” The experience allowed her 9 year-old-son Everett to see her, happy and alive, in the place she loves so much. It also gave Megan the opportunity to see her son playing at the Dam, being a kid exploring a place very special to his mom. It is a sight she will always treasure. He got to see his mom do something she loves. “In a world where the emphasis is on DISabled, the view of the mountains made me feel able again,” she said recalling the emotions she was feeling while looking up into the peaks and breathing in that smell that anyone who has spent time in the Adirondacks knows, heavy pine and fresh air.

She made a post on Adirondack Backcountry Hikers on October 23, 2022, announcing her journey: “20 months ago I was diagnosed with a rare and terminal cancer that left me paralyzed. I didn't let it take me from the mountains. I adapted.”

Currently, Megan is in hospice care. The prognosis for people who are diagnosed with her illness is 2 years. She is 4 months shy of that, but speaking with her, you would never know any of this. Her energy and outlook are inspiring and nothing short of amazing. As we spoke, I had to keep reminding myself why we were talking, because, at times, the conversation was just two people trading stories about what draws them to the mountains and how special it is to see the pristine backcountry that lingers with us long after we’ve returned to the real world. It is absolutely possible to view a place as a friend. At times, our conversation was two people who didn’t know one another trading stories about a common friend.

She has tried experimental treatments, but there is no way to predict when and how the cancer will grow or spread. At this point, her focus is on symptom management.

She hopes to go back to the mountains she loves, but access is challenging. Finding vacation rentals with accommodations for a wheelchair is difficult, and access to the backcountry is all but impossible. While national parks are increasing access for people with disabilities, the Adirondack park, for many reasons, is slow to pivot.

When asked what it was like to be back at the Dam, she said “I Felt like a Badass”. It was even an occasion to allow her son to say it too. “Mom’s a badass.” It was a day the two of them will cherish. Seeing the photos of her on the Dam, badass is the perfect word. She didn’t let cancer take her from the landscape she loved.

“The mountains have saved my life numerous times, it is where I find power. Everything in the wilderness has prepared me to be handicapped and disabled.”

Megan advocates for Grit Freedom Chairs, lever-driven, easy-to-push all-terrain wheelchairs to be available at appropriate locations in the park to open the Adirondacks to people with mobility issues. Not the backcountry, but places that are close to parking access and would allow people with disabilities to experience the park safely. After her trip to Marcy Dam, she says with a few small modifications to the trail, the effort would have been much easier and safer.

Magan plans to donate the Grit Freedom Chair to the Adirondack Loj after her death so it will help others access the landscape she loves so much.

You can support Megan here: https://www.gofundme.com/.../help-meg-with-cancer...

#Adironacks #Cancer #Access