Note from Carolyn: Below is a guest post written by Lisa M. Tautfest. Lisa’s story is incredibly powerful. I hope to continue to share personal stories from others with you on A Beautiful Ripple Effect. These personal anecdotes shed light on trials and tribulations that connect us rather than separate us. When we are able to relate to others, we feel less alone, less strange, and less forgotten. To share your bio is easy—to share your story, the moments of highs and lows—that requires courage and incredible vulnerability. It’s these stories that change lives. It’s these stories that I hope to share. Thank you, Lisa, for sharing your beautiful story.
One of my favorite quotes is from Tuck Everlasting by Natalie Babbitt. Immortal and fearless Tuck urges Winnie to let go of her preoccupation with her own mortality. “Don’t fear death; fear the unlived life. You don’t have to live forever, you just have to live.” Simply stated. Yet why is it that when looking back on the moments, minutes, and even seconds of our lives, so much is spent wasted, afraid of the outcome? Shouldn’t it be about embracing the journey, because it’s not the beginning or the end, but the process in the middle that we really call life?
It’s always intrigued me that the most rewarding decisions in life have been the ones I feared the most. Skydiving, talking to strangers, diving with sharks, living on my own, brain surgery, falling in love, and losing it all. For most of early adulthood I lived my life in fear. Fear of the future, afraid of what I didn’t know, scared like hell of losing control. I accepted unhappiness in my relationships, terrified of the alternative. I didn’t know who I was by myself. I became more of a stranger to myself than to anyone else. I could see and hear the vacant shell that my once vibrant spirit called home. I sheltered myself from anything that could trigger pain. I gave up passion for the people and things I loved the most. Even worse I gave up passion for myself. I was too scared to have the courage to let go. I. Was. Numb. The idea of letting myself feel happy paralyzed me. I sabotaged and robbed myself of many great joys for fear that the feeling could disappear at any minute. I closed myself off.
Three or four years after being diagnosed with Trigeminal Neuralgia (TN), a debilitating brain disease, I began to realize that I was not living. I simply existed. The funny thing about chronic pain that most people who don’t experience it will never understand, is after time it not only becomes your most hated enemy but also your best friend. Friendship is supposed to give you comfort and in a sick way TN became the closest friend I had. I gave up relationships with other people I cared dearly about because the only one I wanted was the one I had with my disease. Being in such an unhealthy “relationship” I couldn’t see that the isolation it created came full circle. My life revolved around doctor’s visits, injections, medications and everything else that comes with a diagnosis of TN, yet I had no one to share these with but the ugly disease.
Obsessed with getting better and being pain free, I didn’t realize life was passing me by. I became complacent with the things and people I loved. I neglected friends and family choosing to spend my days and nights isolated and alone. It was easier than the risk of letting someone in, only for them to disappear upon finding out I was sick. But what I quickly realized is my relationships flourished when I was honest. I started letting people into my life and the daily struggles I face and it was clear I had been treating people the way I feared they would treat me. I gave no one a chance to prove me wrong. I greatly underestimated the capacity to love and accept unconditionally that a true friendship has. I quickly became aware of the amount of people out there who may never know or feel your pain, but have the depth and compassion to understand a basic human struggle. Yes I have an illness for which I am in pain more often than not, but the people that mattered didn’t care. They pushed me when I couldn’t go any further, they inspired me when I lost sight of my dreams, they laughed and cheered with me when I triumphed, and most importantly they taught me to let love back into my life. They showed me that I did possess a great love and it was not for my illness. I learned to have love for myself stripped down bare with all its imperfections and love from others without the fear of it slipping away at any moment.
Looking back I don’t regret the time I spent afraid, but I do know that I will never again live my life in fear. That time taught me it’s not reckless to jump in blindly with my heart wide open. It’s okay to embrace the unexpected adventures that life might throw my way. And yes I’ll trip and stumble, laugh and cry. I’ll have days where I am on top of the world and days where the universe feels like it is pushing back so hard I might break and snap in half, but at least I am living life on my own terms. These are the days that define us. These are the moments when we can face the pain without shutting down.
Life is meant to have many ups and downs. What I have learned from my experience with chronic pain is that if you don’t run from it you can nurture the lessons you learn during the difficult moments. It’s OK to be imperfect. It’s OK to allow others to see your flaws. Being vulnerable is beautiful; our mistakes are what people love about us. What defines you and I as beautiful people is being able to show others your human side. Everyone has battle scars; they tie us together as an imperfectly perfect human race.
Life is an incredible journey I would not change—my struggles I would not trade. This is my magnificent failure.
image: susannah tucker
Carrie McCarthy is the founder and co-author of 
Leana May is in the midst of her training to become a pediatric oncologist.
