I’m Sarah. I am 44 years old. I am a mother, daughter, sister, wife, and friend. I am also a singer (who quit her women’s chorus), a nutrition consultant (who is taking a break from seeing clients), an aspiring circus artist (who no longer scales the static trapeze), a yogi (who can’t commit to classes), and a hiker (who has been known to go months without climbing a single hill).
There are days when I never get out of my pajamas, when I get back in bed after dropping my kids off at school, when I ignore my puppy’s need for exercise, when I fail to make it to the grocery store or clean up the kitchen, when I reschedule clients and cancel on friends…and even on my husband. I am chronically ill.
I wasn’t always sick. Growing up in 1970s San Francisco I had loads of energy. I was a tomboy, a gymnast, an intrepid explorer of neighborhood backyards and the hills of Twin Peaks. I had trouble sitting quietly and hummed at the table. When I wasn’t running around my head was buried in a book, and I ignored my mother’s calls to come to dinner. I had an active imagination and dreamed of becoming a marine biologist (specializing in dolphins) or a librarian. In reality I became an elementary school teacher and then a nutrition consultant.
Looking back there were signs of the challenges to come; I just didn’t realize their significance. I had eczema, digestive issues and bouts of asthma as a child. I also took rounds of antibiotics for recurring Strep Throat. As a teenager I developed acne which continued into adulthood. After graduating from college I added anxiety to my list of conditions. Going through two pregnancies made my IBS symptoms worse and brought back the asthma, along with depression and anxiety. I was frustrated by my symptoms, of course, but I never imagined that they were leading me down the path of autoimmunity.
By my early 30s I had had enough. From 2005 to 2012 I did everything I could to get to the root of my symptoms. In addition to seeing several different primary care doctors I visited dermatologists, allergists, psychiatrists, and a gastroenterologist. I was prescribed medications that masked my symptoms temporarily but never addressed the underlying cause(s). I searched outside of conventional medicine and saw an acupuncturist and an Ayurvedic practitioner. Both were helpful, but it was a nutritionist in 2012 who finally put all of the pieces together. She had my internist order labs to check for antibodies to gluten and my thyroid and determined that I had Celiac and Hashimoto’s. I was relieved to finally have a diagnosis and figured that I would recover my health quickly. Unfortunately that was not to be the case. Not everyone with autoimmunity becomes chronically ill. But I am…for now.
Living with chronic illness is a like snorkeling without a snorkel. You try to focus on all of the beautiful sea life, but you keep having to come up for air. It’s hard to fully immerse yourself in the experience because you are constantly being interrupted by that pesky need for oxygen. Illness is a constant interruption in my life. I take frequent breaks from the routine living of life to manage my conditions. Over the past several years I have had to drastically alter my diet, exercise routine, social life, volunteer commitments, professional life, and interactions with my husband and children as I muddle my way through. For several years after my diagnosis I struggled with feeling damaged, feeling like a failure, and resenting my limitations. More recently I have started to see the beauty in the journey. The following lines, written by the poet Leonard Cohen for his song Anthem, move me deeply and inspired the creation of this blog:
“Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything
That’s how the light gets in.”
Like all of us, I am cracked. And like many of us I am cracked in a way I never expected to be. Some days I feel I no longer have anything valuable to offer the world. All I see is the brokenness. But light has begun to come through the cracks and is gifting me with humility, flexibility, gratitude, compassion and a bit of wisdom. I am no longer concerned with presenting a perfect self to the world. I appreciate how I have grown through the struggle and want to share my cracks with you (and ring the bells that still ring). I hope that you will find some comfort in sharing a journey that may be similar to your own. There is a lot I can’t do in my current situation. But I can do this.