Avalanche dream—heavy breakage of trees, boulders ripped from
their footings. Chunks of ice bouncing past as the swirling white
mass picks up speed. I’m running running running but can’t stay
ahead of it. Lungs burn, tears stream from the effort, the strain.
Glazed in sweat, I wake up to the blare of alarm clock, hurriedly dress
and drive to the hospital.
“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.
I was in secondary school in Nigeria when I first noticed the lesion on Uncle Eze’s lip. Like many men of his age in Lagos, he’d picked up smoking in the 1980s, when foreign cigarette companies flooded our markets with glossy advertisements and promises of sophistication. The habit stuck, even as the glamour faded. The streets of Lagos were dotted with tobacco vendors then, selling single sticks to businessmen who’d made cigarettes part of their daily routine.
“It’s nothing,” he said, when I pointed to the growing sore. In those days, seeing a dermatologist meant traveling to one of the few teaching hospitals in the country. Uncle Eze, my mother’s eldest brother and the owner of a thriving electronics shop, had his business to run, customers to meet. The lesion could wait.
The Distance Between Read More »
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.
Another Trip to the ER Read More »
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.
Strength Beyond Limits Read More »
It had happened before; the previous time, it was a phone call on a Tuesday morning. This time, the message came by email on a Friday.
“Do you remember me?” wrote the sender.
“Do I remember you?” I wrote back. “I think of you often and fondly, although it has been over twenty-five years since we last spoke, and thirty-four years since we first met.”
“I Fell Out of the Sky” Read More »
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.
My Thyroid Thoughts Read More »
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.
A Life Dictated by Water Read More »
Editor’s Note: This piece was awarded an honorable mention in the Pulse writing contest, “On Being Different.”
“What do you want to be when you grow up?”
The first time I was asked this question, it didn’t occur to me that my answer might not be matched by a corresponding opportunity. In the years since, I’ve learned that the question should have been “What will you be allowed to be?”
Finding Worthiness in Being Different Read More »
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