Conversations with Chandler Barre

Today we’d like to introduce you to Chandler Barre. 

Hi Chandler, we’re thrilled to have a chance to learn your story today. So, before we get into specifics, maybe you can briefly walk us through how you got to where you are today?
I have walked a unique path, yet I find it to be the most fortuitous turn my life could take. I became chronically ill at age 19 undergoing 20+ surgeries and procedures in the past seven years due to a genetic connective tissue disorder. This stopped my career goals at the time, my propensity for travel, my outdoor passions for rock climbing, backpacking, and general exploring. Everything by which I had defined myself seemed to disappear in an instant leaving me in a wake of tears and with a body I no longer felt I could trust. However, walking through this journey I have found out how to carve a new, deeper meaning from life. I have learned how to connect on a deeper level with my friends and family because when your body gives out, you find out who really has your back. I have learned how to appreciate my walk to the local grocers as an adventure I am grateful for in and of itself. At age 19 I began the process of learning that life is not about the grandeur of the adventures you take, or number of likes a social media post might bring, but the qualities of day-to-day life you grow to appreciate, love, and find deep gratitude for. As the old saying goes… stop and smell the flowers. In the pace of modern life, we have forgotten how to stop and not only smell the flowers, but we have also forgotten how to feel gratitude for the simplicity of their beauty and the purpose they hold.

How often do we reflect on why we choose what we do? How often do we reflect on our motivations? Chronic illness is a blessing and a curse. The curse is that I am more limited than I once was (as we all are in some form or capacity) and have to heed these limitations for the sake of my health, but the blessing far eclipse the ‘curse’ when I keep in perspective all that I have gained through approaching the world from a different vantage point.

Can you talk to us a bit about the challenges and lessons you’ve learned along the way? Looking back would you say it’s been easy or smooth in retrospect?
The road has not been smooth. It has been bumpier than a dune buggy traversing Moab. I could list out a resume of diagnoses, surgeries, organ failures, etc. but that is not how I choose to define myself or my journey. To be frank, the bumpiest aspect of this journey has been the process of reshaping how I define my purpose in this lifetime – a difficult task and not one I ever expected to endeavor upon at this age. I had my life planned out. My goals, driven by lofty youthful ambitions, were at first derailed due to the level of medical complications and large surgical procedures/recovery timeframes I was facing. Though I slowly began to realize these ambitions were not simply derailed and could occur at a later date than expected, they were demolished, and not just because of my health.

My values had changed; what I appreciated and what I desired shifted drastically. This is an experience we all face to some level or degree as we grow from children into adulthood and it can be jarring as well as difficult to coalesce who we think we are with what we grow to learn really matters to us as individuals, but it is a growth we ought to learn to embrace. Asking ourselves why, what our motivations are behind what we choose to do, is an important first step.

Once I began asking myself why I chose to do what I wanted to do was the first leap in stepping into who I am today. This realization came to me while sitting in my hospital room being treated for a large jugular blood clot that popped up right after telling my family I was on the upswing of recovering from a very large abdominal surgery/reconstruction of my diaphragm and that all I wanted was some peaceful time outside of the hospital and no more surgeries. I had just been told I would need another surgery to treat the cause of the blood clot and was sitting alone (due to COVID protocols) in the hospital room bemoaning that I could never move forward with my ‘plans’. Then it hit me, why have a ‘plan’ if it creates an unrealistic expectation that simply serves to set myself up for disappointment – I was cognitively stuck in my old routine of planning out my life, while ironically, living a life that was not conducive to planning for medical reasons. And this was when I asked myself “why”? Not, “why me”? Not, “why do I matter then in this modern face-paced world we inhabit”? But a productive “why do I want to do _____?” I found myself filling in the blank with all the goals I had set for myself, both new and old. When I realized, I did not really personally want to do any of them. I found I had reasons for these goals, but they were not deriving from my own wants and desires as much as from the things I thought I should want to do or needed to do to be successful. I was viewing myself and my goals through a lens of what I thought I should be doing and needed to be doing instead of truly asking myself “what is it that I want to do?”, “what fulfills me in this life?”, “what brings me happiness day-to-day?”. These are important questions to ask because the answer can be quite surprising (speaking from personal experience).

Thanks – so what else should our readers know about your work and what you’re currently focused on?
My work has evolved and branched out in many forms. I run a resale shop where I take vintage clothing and antiques and repair/customize them for a new revamped life. I think I see a little of my own story in my passion for resale – I like the idea of taking discarded or damaged items, that had a life and use and repairing/repurposing them to a new form or use. I find solace in giving these items a new lease on life. Probably because it reflects my own journey. I have also found a deep passion for volunteering. When there is a will, there is a way and there are many people facing chronic illness that have found a new purpose in their will to live life no matter what limitations they face. It is a deeply inspiring community – we may be pitied by some but to those who know us we are living our best lives and deeply motivated to do so.

From the twists and turns my journey has taken, I began working to express my viewpoints in writing, photography, and general artistic expression from finding and repurposing items to modeling. I have learned that my unique personal experience has created a treasure trove of perspective and viewpoints that are not always derived from a traditional day-to-day life experience and I bring this unique perspective into all aspects of my work.

The most unique gift I have found I was given from being born into a body that is chronically ill is the intense gratitude I hold for life, even the most mundane aspects. Yes, life is difficult. Yes, being chronically ill and having a body that can and does fail is frustrating. Yes, I would choose this path over the one I ‘planned’ because it has left me a more grateful, more observant, more alive version of myself than I ever would have been if this genetic connective tissue disorder had not been a part of my path.

What matters most to you?
What matters to me most is living a life that is true to myself, not what I think I am expected to do. There are many pressures in modern society, and it was not until I was stripped bare of who and what I thought I was that I realizedthat almost everything I grew to know as defining characteristics for myself by age 19 were mainly derived from what I thought I ought to be or ought to do, more so than who and what I actually wanted to be in this lifetime.

Caring about people first, taking time to check-in and ask myself why I am choosing to do what I am doing, knowing that I am being true to myself and my values is what matters most to me and I apply it to every aspect of my life. Living a life of kindness and understanding are key for my personal journey in finding gratitude/acceptance for my situation – the gateway to making the most of it.

Contact Info:

• Instagram: instagram.com/baddestbircharound

Image Credits
Chandler Barre