2025

“Would you do it again?” my husband’s friend asked. Gesturing to indicate the weight of the decision, Dan held out a hand and said, “On the one hand, I needed 10 liters of oxygen 24/7 and probably wouldn’t last six months.” Then he held out his other hand and said, “Or a double-lung transplant. I chose to live.”

Dan had lived with scleroderma for 20 years, dealing with daily pain and countless medical procedures, while the autoimmune disorder gradually destroyed his lungs. But he loved life and was determined to keep going.

Another trip to the ER. I am exhausted and worried and afraid. Fighting for doctor’s appointments, transportation, medications. No one listens or cares how hard it is.

“How does anyone do this?” I cry frantically into the nurse’s shoulder. She’s understanding and very nice, but she can’t make it all go away. She does what she can, knowing there’s nothing she can do once I take my daughter home.

There is a saying that mind over matter comes from using mental willpower to overcome challenges. However, for people with disabilities who have lost bodily function, it means something much more profound: a victory over the terror of disability, a celebration of the resilience it takes to face intense struggles.

I have a hormone-related chronic disease, so I need seven pills per day. I have a hormone-related chronic disease, so I feel alone most of the time. I have a hormone-related chronic disease, so I cannot run or jump. I have a hormone-related chronic disease, so I harass myself most of the time. I have a hormone-related chronic disease, so I get mad with those I love.

Dear Dr. B,

I’m writing to say I’m glad I listened to my gut and didn’t let you cut me open.

You may be surprised to hear that my Achilles tendon grew back after a year of recovery—eight weeks on crutches and in a cast, 32 weeks in a boot, various shoe lifts and wedges, months of physical therapy, acupuncture, visualization, extra vitamins, collagen, bone broth, castor oil packs, and mantra and sound healing—but it did grow back, despite your lack of faith. I am now back on my feet hiking, teaching yoga, and even hula-hooping for an hour at a time, pain-free.

I have found that grit and grief go hand in hand, just as water stains the sand. Chronic illness is the water, threatening to pull you from the shore. Sometimes you drown until the water spits you back out, while in remission you barely notice the tide in the distance.

“Grit” is the word used by our governor in Michigan to describe the hearty Midwesterners who live here.

“Grit” is the motto of the Detroit Lions, a team that has never before been in the Superbowl but that has a chance this year.

But before grit was Grit, there was my father.

I’ve been aboard a “choo-choo train” for decades. I traveled to college, to medical school, to family medicine residency, to become an attending physician, then a medical administrator. Each new locale exposed me to a novel culture, with new languages, rules, and personalities—forcing me to learn different ways of thinking and relating to my environment.

My daughter and I sat on her bedroom floor, packing up her soccer gear. We both knew the time had come for her to walk away from the sport she loved. Her chronic illness had gotten the best of her, although she’d fought it as long as she could.

When Haley was 11 years old, she had what we now know was an undiagnosed concussion. It started with dizziness and progressed to frequent headaches, vertigo, nausea, and syncope. She started middle school this way, and by her sophomore year of high school was unable to attend class at all. During this time, she continued to play soccer, sometimes passing out on the field. We knew she was in trouble when she raised her hand and took a knee.

“You know what they say, Dr. Chew—every day above ground is a good day.”

My next patient, for whom this is a mantra, is in the waiting room when I duck out for an overdue bathroom break. Her bleached blonde hair is tangled, her jeans tight and faded, her face mashed like a boxer 20 years her senior. Her gray eyes vigilantly scan the crowded room.

When I was in medical school, a physiology lecturer told us about a book called Pride and a Daily Marathon. This narrative case study, written by neurophysiologist Jonathan Cole, is about the struggles and triumphs of a young man in his quest to live a full life after he awakes one morning having lost all sensation below his neck.