The Problem Is Not the Problem
Life Lessons from a 14 Year-Old Girl
Posted September 20, 2011
The word "problem" gets a bad rap. We think that it means something is wrong or bad and often try to get rid of it. Sometimes, we use spiritual practices or positive thinking in an attempt to erase our problems. But spirituality isn't an eraser. In my experience, spirituality is a container for the entire human experience, including the experience of problems. One of my greatest teachers about this life lesson is a 14 year-old girl named Claire.
Ten years ago I experienced one of those times in life where everything seemed to be falling apart. The relationship was over, the job had ended, and my desire to pursue my previous career was waning. The only thing I knew for certain was that I was accepted into the lottery for the New York City marathon. The longest distance I had run up to this point was 6 miles, so I had some training to do! I decided that the marathon should be an opportunity to align myself with a charity, and started to pray for a worthy cause to touch my heart. Shortly thereafter, I met Claire.
At the time, Claire was 4 years old. I didn't realize when we met that she had a genetic disease called Cystic Fibrosis. I was feeling a little melancholy on the day we met, and while I was having lunch with her Dad and Stepmother, Claire drew me a picture on the restaurant placement to cheer me up. From that moment on, we were fast friends.
I divided my marathon fund raising efforts between the CF Foundation and Claire's expenses that were not covered by medical insurance. But this is not where my story with Claire would end. Shortly after befriending her, it became clear that she needed a nanny to help with the balance of kindergarten, several breathing treatments a day, monitoring the extraordinary calorie intake she needed, trips to the hospital, etc. Without thinking twice, I blurted out: "I want to do it." My friend wasn't sure that this was a very good career move on my part, but I truly felt called to work with Claire while I was going back to school. And that is what I did.
Claire's imagination is incredible. Since I have a little flair for the dramatic, we quickly made just about everything a song, a play, or a game. We lived in our own imaginary world where driving to school was an undersea adventure, replete with whale races and meaningful conversations with seahorses and turtles. A witch could fly into the kitchen window at any moment and every morning, Claire was the star of her own game show where she would teach the kids in TV land about manners and how to take all of your vitamins. I was smitten, to say the least.
Oddly enough, some of our most fun times were when Claire was staying in the hospital. She brought her creativity and enthusiasm for life wherever she went, so the games and fun never stopped. Like many children with such an illness, Claire was also very emotionally intelligent and we would talk about everything. She wasn't afraid to voice her feelings and to ask for what she needed.
I wish I could say that I was able to continue working with Claire for years to come, but eventually my graduate studies demanded more of my time. To this day, it was one of the hardest decisions I have ever made. Claire and I made a pact that we would always be friends, and I'm so thankful that we've been able to maintain our relationship.
In April of 2010, Claire went to the hospital for a fairly routine surgery; she had been through approximately 25 in her short 13 years. But this time, something went wrong. She came out with blood sepsis and within days, she was put first on a ventilator (a machine designed to mechanically move breathable air into and out of the lungs), then on an oscillator (Claire calls this a ventilator on steroids). No child with CF had ever come off of an oscillator. She was in a medically induced coma for 17 days.
Support for Claire was extraordinary. Prayer chains spanned the globe and the hospital security had to work overtime to keep all of the visitors at bay. We created a Facebook page to keep everyone informed. To inspire those who hadn't met Claire, we posted videos of her singing, dancing, and being her silly self. They spread like wildfire—people couldn't get enough of her magical spirit.
I am immensely thankful to report that Claire beat the odds and came off of the oscillator. While she has always been a very spiritual girl, the experience of coming so close to death seemed to amplify her wisdom, grace and gratitude. Although she still lives with Cystic Fibrosis and the many challenges that it brings, she is determined to live mindfully, boldly, and courageously in each moment. She feels called to share the message that life isn't about waiting for the cure (the finish line, or the fix) but about finding happiness in whatever your circumstance.
I had the privilege of watching Claire speak at a TEDx conference in La Jolla this past weekend. Can you imagine? We thought we were going to lose her a year and a half ago, and now she is standing on a stage that reaches millions. Her talk centered on the idea that CF is "just a disease." It doesn't define her in a negative sense. In fact, she talked about how problems are really just "empowering situations." I think we can all benefit from looking at things in such a way. Who is to say if something is "good" or "bad?" Perhaps it is all one empowering situation after another.
Claire's talk made me think of emotional sobriety and of how many times I've heard people in recovery say that their addiction is one of the greatest gifts in their life. Addiction brought them to recovery and keeps them tethered to a program that forces them to grow spiritually and emotionally. They never would have dedicated themselves to such a spiritual path if it weren't necessary to stay sober. The problem is not the problem—it is the gift. Even my aimless wondering a decade ago wasn't the problem I felt it was at the time. The job loss, the relationship loss... all led to my working with Claire, to my return to school, and to an incredibly fulfilling journey.
For the last 10 years, Claire has inspired me. When I grow up, I want to be just like her. I dedicated my book to her with a note: "They say it takes a village to raise a child... but this child has raised a village." I hope that her message of living abundantly no matter what challenges you face will inspire you as well. She embodies spiritual principles in a way that never bypasses her feelings or the truth of her illness. She remains incredibly present to every step on her path, appreciating each and every breath. This doesn't mean that she doesn't have a bad day, or that her positive outlook has erased her challenges; it means that she brings her outlook and spirit to her challenges, helping her to live with them.
It's not so much the problem that gets us down; it is our thinking and attitude about the problem. No matter what hand you are dealt, how can you choose acceptance and gratitude? How can you allow your experience to be a vehicle for impacting others for the greater good? Claire decided to start a foundation to spread her joy, and her message that life doesn't start when things get "better." Life is now. Claire's Place Foundation, Inc. is an extension of the philosophy that Claire has instinctively lived by her entire life and an organization aimed at helping other families who have been impacted by Cystic Fibrosis.
I will end this post with a spontaneous music video that Claire and I filmed from her hospital room. We are still just as silly, singing songs, and making each other laugh every chance we get: Don't Stop Believing
Ingrid Mathieu, Ph.D. is a psychotherapist and author of Recovering Spirituality: Achieving Emotional Sobriety in Your Spiritual Practice.
Copyright by Ingrid Mathieu, Ph.D., 2011. All rights reserved. Any excerpts reproduced from this article should include links to the original on Psychology Today.