"Life is 10% what happens to you and 90% how you react to it "
-Charles R. Swindoll
For years, I've been somewhat fascinated by a former schoolmate of my children. Her name is Clara, and she really embodies this quote. She suffers from Juvenile Idiopathic Arthritis (JIA), an autoimmune disease which can be painful and debilitating. She's likely in pain most of the time, but rarely shows it. There are no grimaces or complaints from this girl. Just steely determination and academic excellence. Little did I know, Clara would teach me valuable lessons about parenting and living with pain that my family is soon going to need. My son is scheduled for open-heart surgery this month and Clara's story is giving me strength and insights into how to help him cope with pain.
At the age of five, Clara developed severe pain in one wrist. The pain soon spread to many other joints, leading to a diagnosis of JIA. Chronic pain is a side effect of this disease, and kids with JIA report that they experience pain 70% of days. Clara’s pain comes in several forms, but when it's severe, she says it feels like her joints are on fire.
Over the years, Clara (now 15) has endured many procedures and treatments designed to control her disease, protect her joints, and manage her pain. She draws on a few different strategies to help her pain, including medicines. Her mother says she has received so many needles in her young life that seeing other students recoil at immunizations can give her quite a giggle. It seems really unfair that some of the treatments she endures to reduce her pain are actually painful to receive.
Although Clara has spent many years in chronic pain, she refuses to let this disease control her life. She maintains a high average in the gifted program at her high school, and she loves to compete in sailing competitions and ride horseback. Luckily, physical activity has been shown to be good for people with chronic pain, and activities like yoga actually help to reduce pain. She has won many science fair awards throughout middle school and high school and she loves to read, write stories, and act in school plays. She has no plans of slowing down. In fact, travelling the world is also on her bucket list.
As a parent, watching from a distance, I wondered how she was able to accomplish so much while being in almost constant pain. How could she still be involved in so many activities given the hours she was required to spend at the children's hospital? How did she cope?
These are some lessons I picked up from this amazing teenager, Clara:
Clara claims it can be frustrating to find a balance between striving for excellence in her activities and pushing her body too far, but she is determined to find a way. Seeking balance seems like a great plan when dealing with all types of pain. A good sob does wonders, sure, but so does the distraction of shopping for that perfect dress and finding an excuse to go out and wear it. Did you know that distraction can actually positively impact how much pain we feel? It's amazing how powerful our brains are when faced with seemingly insurmountable obstacles.
Clara’s story has taught me the importance of perseverance. She is one of the bravest people I know and trudges on each day despite limitations that would keep most of us in bed. Not only does she push through pain, but she also achieves excellence in the process. I'm guessing some of her inner strength came from her parents. They trusted psychological findings about the importance of going against their instinct to coddle their daughter and instead, refused to let Clara’s pain be an obstacle to life.
When in pain, Clara says she finds it helpful to talk to others in a similar situation. This is key, because although all of us are different, none of us are immune to pain. We all hurt sometimes, in many ways. Talking makes us feel less alone and allows us to hear the best things our friends have to say. Plus, the new emotional me has learned that when you leave yourself open, someone always jumps in to patch you up.
When pain disrupts Clara’s sleep (a common problem for children with juvenile arthritis), she chooses to fight back with mental positivity. “If I'm awake at night from pain, I try to find one reason why I'm glad that I have arthritis, and surprisingly there are a few. I've made tons of friends at the Children's Hospital of Eastern Ontario (CHEO) that I wouldn't have met otherwise, I now know some of the best and kindest doctors and nurses in the world, and I've participated in many research studies to help doctors learn more about this disease.” Distraction through reading also seems to help.
It is humbling to witness the level of gratitude Clara displays. “I feel that, thanks to the doctors and nurses at CHEO, I can lead a relatively normal life. Sure, there are obstacles, but everyone has problems — mine are just different from others. I am greatly inspired by the people I've met at CHEO, both doctors and patients. The doctors because they are tireless in their effort to cure their patients, and the patients because of their stories — each of us has our own, and sadly most of theirs are grimmer then mine, but it is my privilege to meet them and learn their stories.”
Clara's life lessons are helpful for any of us coping with the many types of pain that life hands us whether physical, mental, or emotional. After taking an inventory of everyone I could think of, I realized there is not one person who hasn't experienced pain in their life, some more severe than others. I'm not a spiritual person, but meeting Clara made me feel like some higher power was trying to send me a message. Her parents must be so proud.
Thank you, Clara. I treasure these lessons you have taught me.
For more information about Juvenile Idiopathic Arthritis: