Why It's Hard to Make Decisions With a Chronic Condition


Life is full of hard choices. How many times have we all heard this? We all learn consequences from an early age when punishments are the result of poor behavior and decisions. Our mentors guide us through the first major life decisions, as we decide if and where to attend college, our first course selections, and later they advise on strategies for interviewing and ultimately accepting first jobs.

The complexity of these decisions only increases as we get older and life gets more complicated. When do you decide to buy a house and which one to purchase? Should you get married and have children? These questions are universal; bars and coffee shops around the world are full of groups of millennials contemplating these questions over countless bottles of wine and never-ending lattes. Of course, I am no different than any of you and struggle with the same questions and major life decisions. However, my physical differences have given me a unique perspective when faced with one such choice.

I have never had trouble accepting that which I can’t do. In fact, with a little innovative thinking, adjustment and patience, there is little I can’t do. The true challenge comes from accepting that while I can do something, it may not be the wisest choice for me. With this realization comes of difficult choices.

While studying abroad in Cordoba, Spain in 2006, I stared down the face of these choices daily. At the end of the semester, our group of 60+ students was planning to attend a festival celebration a couple of miles outside the city. While decked out in traditional flamenco dresses, students would show off their “Sevillanas” dancing skills at the outdoor event. Walking to and from the event alone would be a challenge for me, let alone the dancing and hours of standing involved in the event itself. Recognizing that the opportunity to partake in these cultural experiences while studying abroad was a once in a lifetime experience, I desperately wanted to join my fellow students. But, I knew that the experience would involve numerous falls for me and the resulting body aches and days of recovery were probably not worth it for me. As I listened to the excited chatter and laughter as my friends left for the celebration, I couldn’t help but wonder if I had made the right decision and the reality of what I would miss weighed heavily on my mind.  I worried about what my peers would think of my decision and struggled with feeling that I needed to apologize and defend my decision to stay behind.

I had always hoped that as a professional adult the choices would get easier. I imagined that years of practice would provide for seamless decision making, but like so many things, the tough decisions prevail the complexity only increasing with our advancing age.

Several months ago, I jumped at the chance to join the fundraising team at Boston Children’s Hospital. I have been a long-time patient of the hospital and credit its doctors with my growth success and independence. The chance to lend my professional talents to this organization and give back to a group which had given me so much seemed too good to be true. Eager to start my new advent, I embarked on my first commute by public transportation with the sense of optimism that comes with all new adventures, figuring I could get used to anything.

Two days into the new routine, I had been closed in the train door more than once, fallen on the lap of unsuspecting strangers as I struggled to keep my balance and came home with aching feet. I came home and fell into bed minutes after walking through the door physically exhausted and mentally defeated after having apologized, laughed and smiled my way through innumerable stumbles. Week night get togethers with friends were a thing of the past as I found myself turning down invitations due to sheer exhaustion. How could this be so hard? This was the opportunity I always wanted and now the reality was proving impossible for me.

With a little grit and determination, I was sure I could make it work – but at what point was the cost too high? I have always valued a balanced life and the idea that this new routine resulted in perpetual frustration, zapping me of all my energy and limited my opportunities to live the life I wanted that was acceptable to me. Those who saw me struggling advised me to just give up and find a job closer to home where I could drive and park easily, but this was unacceptable to me. I had never given up before and I wasn’t about to start now.

These are the hard choices we make that no one else thinks about. It’s not just one choice, but an endless series of decisions to establish and maintain life’s fragile balance. All too often, the battle for balance and the maze of difficult decisions it entails feels lonely. If I have done my job well, my temporarily able-bodied friends and family won’t even realize that I have made these choices and I yearn for their acknowledgment and even praise for all that I manage. Then I realize, instead of embracing the frustration, caught it quagmire of loneliness, I should be thankful. By making tough choices every day you become practiced in the art of consequences and learn to live comfortably with life’s inevitable adversity. Patience, dedication and determination are practiced skills with the power to destroy, transcend or avoid even the largest of obstacles.

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Thinkstock Image By: BrianAJackson


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