You Need to Leave
My son’s girlfriend Madeline looked back at me with golf ball emoji eyes as I said, “You need to leave.”
Her normal breathing resumed as I explained: you guys should be traveling, living in other places, experiencing different cultures. Not watching Netflix with me.
My 19-year-old son Clay was diagnosed with severe Crohn’s disease in the summer of 2016. Crohn’s is an auto-immune disease that puts the immune system at odds with the digestive tract. The disease causes painful and unpleasant side effects which can lead to internal bleeding, cancer and death. Crohn’s affects 1 in 200 people and is being diagnosed in adolescents and young adults at an alarming rate. There is no cure. Research is underwayinto environmental and dietary causes, but according to current data, Crohn’s is neither caused nor cured by diet. Clay is on a cocktail of weekly biologic injections, an organ-rejection prevention drug and oral steroids all with the goal of moving him into remission.
At 19, my husband was traveling
through Guatemala and Belize, backpacking, taking pictures and bumming sleeping quarters—sometimes spending the night in a tree or on the beach. Greg’s stories never get old. Our oldest daughter Alexis spent part of grad school at an orphanage in South Africa—so many stories of heartbreak and hope. That experience changed the trajectory of her life and purpose forever. Emma, our youngest, spends six weeks each year at a North Carolina summer camp. We are amazed by her stories of multi-day camping and sailing trips in the mountains and double in laughter at stories of cabin campmate antics.
I want to hear Clay’s stories.
He should be backpacking through Europe, sleeping in a tent at Bonnaroo or waiting tables for a summer in a coastal resort town. I want Clay to tell stories about the time he got on the wrong train in Spain or his nutty classmates at his study abroad program or that great restaurant he stumbled upon when his bike broke down.
Instead, Clay is home with me, down the hall, in his childhood bedroom, watching movies. He’ll come out and tell me stories about the filmmaking mastery of the Godfather trilogy. Don’t get me wrong; I adore having him here. At the same time, I want him to leave. I want him out in the world, ticking things off his bucket list. Heck, I’d love for him to just go to dinner with his friends.
A well-meaning friend said, “Clay just needs to shake it off!” I completely understand why she said this. Clay falls into the “but you don’t look sick” category of chronically ill people who muddle through their day. I see the confusion on faces as I talk about this young man who carries a full load at college and holds down a lifeguarding job.
The little thought bubble reads: So why can’t he travel?
Florence and the Machine explained the “shake it off” theory this way: It’s hard to dance with a devil on your back. For Clay, the devil is the restroom. For Clay, there is always apprehension as he carefully weighs every outing, plots his day, considers all options with one thing in mind: where is the restroom.
While Clay’s hesitation is completely understandable, this mom is determined to get him out there, and I’m not alone in this desire. There are entire programs dedicated to teaching chronically ill people how to move through the world. The Mayo Clinic Pediatric Pain Rehab Center for adolescents and young adults is a three-week boot camp that teaches life management skills through a multi-disciplinary approach of cognitive behavior, physical, occupational and recreation therapies plus nutrition counseling and support groups. Their core belief is that talking and thinking about pain or fatigue all the time reinforces the neural pathways for pain and fatigue.
Clay and I have taken a cue from the Mayo Clinic and made a shift. We talk less about his disease and more about what it will look like when he’s in remission and out there experiencing life. We are in less of waiting-for-the-meds-to-work mode and more of a proactive, treat-the-whole-person mode. While Clay is following his prescribed medication regimen to the letter, he’s also seeing a chiropractor and athletic trainer. He’s trying out digestive health-specific yoga classes. A physical therapist helps with his chronic pain. Occupational pelvic floor therapy is an option once he’s in remission. He’s journaling his food and figuring out what meals make him feel best. I require that he do his own grocery shopping, and he prepares most of his meals on his own. Little spoonfuls of positive living that will eventually fill his life.
It’s funny irony as I read fellow moms’ melancholy social media posts about their empty nests and watch as they rack up the little teary-eyed emoji “likes.” I’m over here working hard to nudge my son out. Of course, he has to come back. I want to hear all his stories.
Anne is a chef and owns Red Stick Spice Company. She is the mom of three and “Nan” to two grandchildren. Anne is serving as the interim President of the Crohn’s & Colitis Foundation LA/MS. Learn more at chronscolitisfoundation.org. If your child has a chronic disease, and you need a good listener, Anne’s your girl. Contact her here.