Bree Schuette

I still vividly recall the first time that I realized that something was terribly wrong. It was Easter Sunday and only weeks after I had completed one of New England’s toughest mountaineering challenges — summiting all 48 4,000 footers during a single calendar winter.

I had never been fitter — or so I thought. And, it was meant to only be an easy pre-meal hike with my young teen and my mountain climbing bunny. But, shortly before the final push to the summit, I noticed that my son was far ahead of me. And, in that same moment, I realized that if I did not lay down on the snow-covered trail that I was going to collapse — my breath too raggedy to even call ahead to my son for help.

Shivering in the snow, my breath slowly returned to normal and by the time we had made it back to the car I had convinced myself that it was a fluke — maybe I was tired from a tough week at work or I had not fueled myself well enough. But, a week later when I again found myself face down in a snowbank on a different mountain, I realized that it was more than a fluke. My life had changed.

In hindsight, the answer should have been clear. I have relapsing polychondritis — a rare autoimmune disease that attacks cartilage throughout the body and is particularly savage to the trachea and lungs. But, despite this clear connection and good doctors at academic centers, it still took far longer than it should have to hear the diagnosis — tracheobronchomalacia (TBM). There is just a lack of knowledge in the medical community and, as I later found out, my years of high intensity endurance athletics likely masked some of my struggles.

Now that I have a diagnosis, I would love to say that everything has been smooth sailing. But, that would simply be untrue. And, sugar coating the reality of tracheobronchomalacia does not help anyone. People often ask me what I struggle with the most and my answer frequently comes down to two things.

First, my life sometimes seems terrifyingly small compared to what it was before. I miss my beloved mountain vistas so much and I often wake up in tears from dreams about bluebird sky winter days on the mountains. Yet, despite this sadness, I still cling to hope — hope that an eventual tracheobronchoplasty will allow me to summit a mountain again and raise my hands in pure exhilaration. And, second, I struggle with the sheer financial cost of my treatment for relapsing polychondritis and TBM and our broken insurance system that deems so many of my potential treatments as experimental (and, thus, uncovered). I never thought I would be forced into a life situation where I had to make hard decisions between medical bills and basic necessities. And, I never imagined that while I lost my breath that I would also have to bury my pride and reach out for help in GoFundMes and MealTrains.

And, yet, despite this sadness and challenges, I realize that I am so blessed in this fight — blessed by my incredible parents, my amazing mountain climbing bunny, a community that has offered support in countless ways, and a strong medical team. This may be my hardest mountain to climb (EVER!). But, I am a fighter and I have no intention of giving up …