Coping | Daily Life
“To know even one life has breathed easier because you have lived, is to have succeeded”
— Ralph Waldo Emerson
Caregiving is a gift that may not always be easy to curate, but it is rewarding. I believe there are two main components of caregiving: the care you receive from others, and the care you bestow upon yourself.
Donald and Elaine were only 20 and 22 years old when I came along. They almost lost me at the tender age of 10 to what was eventually diagnosed as Crohn’s disease. Through all the hospitalizations and surgeries in the years that followed, my parents custom-tailored my caregiving. Though they were quite young themselves, they developed a unique sense of knowing how to guide me without enabling me in ways that would hamper my developing resilience and independence. The way they cared for me became the foundation of how I’d learn to care for myself and others. Together, we figured out what worked for us:
THEY WERE MY VOICE WHEN I NEEDED AN ADVOCATE.
No child innately knows how to select the best doctor to meet their needs, communicate with medical professionals, or make informed decisions about their care. My parents modeled a balance of asking questions and active listening. I learned to value the doctors who made me feel like more than just another chart on the day’s agenda. Special thanks (chronologically) to Doctors Lillehei, Nagle, and Korzenik for being diamonds in the rough.
THEY ARE AMAZING LISTENERS.
There were days that my struggles had taken their toll and I was downright insufferable, yet they always listened gently. Whether I needed a discussion about treatment options or simply a shoulder to cry on, their support was unwavering. More than the requisite love and selflessness, healthy caregiving requires communication. I learned that caregivers are more effective when you’re clear about how they can best help you.
THEY INSPIRED ME WHEN MY SPIRITS WERE LOW.
Every day may be a gift, but some days are seriously crappy gifts! This wasn’t the journey any of us intended to be on, but they taught me that life isn’t about the cards you’ve been dealt, it’s about how I play the hand (this phrase later resonated with me when reading “The Last Lecture” by Randy Pausch, which, by the way, is a great read). I learned it’s okay to have a pity party sometimes, as long as you don’t unpack and stay there.
THEY ARE OPEN-MINDED.
By my mid-teens, we decided to explore treatment options outside traditional American medicine. There was some trial and error, but today I’m proud to have orchestrated a beautiful balance of Eastern and Western care modalities to support my wellness.
THEY GUIDED ME WHEN I NEEDED TO BUILD AN ARSENAL OF SELF-CARE TACTICS.
I grew up understanding that rest can be both a treatment for past and current trauma, AND an investment in future adventures. I learned to listen intuitively to my body and know when to respect my limits, and when to embrace the “no limits” life I love. They also taught me to lean on friends and family for help, which led me to form some amazing friendships over the years.
THEY CARED FOR THEMSELVES TOO.
They leaned on their support system when necessary because you can’t pour from an empty cup. Caregiving isn’t always pretty. There were times in my childhood when my parents would give me a nudge, or they’d drag my butt to a ski area or family party, and I was fully convinced they were in the running for Worst Parents in the World. Combine that with some typical teenage angst, and…well, I can’t adequately describe how thankful I am for them clinging to grace on the tough days.
Self-care is imperative for people with chronic illnesses. My best-laid plans don’t always come to fruition, but I learned some valuable coping mechanisms over the years:
CONNECT WITH PEOPLE WHO FUEL YOUR SOUL.
I’ve had the privilege of having several wonderful friends, and gems like Karin and Erin make this crazy ride worthwhile. Find your people and love them hard.
TALK IT OUT.
Thankfully I learned that bottling things up won’t turn me into some finely aged wine. There is restorative value in a good talk with someone who understands what you’re going through.
GO WITH WHAT FEELS GOOD.
I treat myself to bubble baths, massages, and long hikes. Want to bury yourself in a pile of puppies for a serotonin boost? Consider this your green light to do so.
BASK IN THE GOODNESS AROUND YOU.
Kevin McHale, wherever you are, thank you for ducking through the doorways of Boston Children’s Hospital in the late 80’s. Watching my dad emotionally shift from distraught father to starstruck Celtics fan for a fleeting moment meant more to me (and him) than you know.
It’s been a long and bumpy ride, but I can’t imagine any better caregivers than my Mum & Dad. There are many grand gestures of gratitude I’d love to give my dear parents, and maybe someday they’ll come to fruition. Until then, I will carry on their legacy of caregiving.
Dawn has had Crohn’s disease nearly her entire life, but she’s never let it own her. She loves to travel, and her “no limits” life has included many adventures. She has a ravenous appetite for music, is passionate about helping others, and she’s never met a dog she didn’t like.
She makes her home north of Boston with her son and rescue pup.