Browsing Tag

chronic illness

Guest Posts, Illness

How My Invisible Illness Made Me Capable of Anything

July 18, 2016
illness

By Amy Oestreicher

I’ve always thought myself capable of overcoming anything.  Overcoming illness meant waiting for a fever to go down. Illness was a stuffy nose – a sick-day, an excuse to miss a day of school. At 18 years old, “illness” took on an entirely different meaning. Illness meant waking up from a coma, learning that my stomach exploded, I had no digestive system, and I was to be stabilized with IV nutrition until surgeons could figure out how to put me back together again. Illness meant a life forever out of my control and a body I didn’t recognize.

What happened to me physically had no formal diagnosis. I had ostomy bags and gastrointestinal issues, but I didn’t have Crohn’s disease. Doctors were fighting to keep me alive, but I had no terminal illness. There was so much damage done to my esophagus that it had to be surgically diverted, but I was never bulimic. I didn’t fit into any category. Suddenly, I was just “ill”.

I became a surgical guinea pig, subject to medical procedures, tests and interventions, as devoted medical staff put hours into reconstructing and re-reconstructing me, determined to give me a digestive system and a functional life. Continue Reading…

Binders, Chronic Illness, Guest Posts

The Fine Lines of Twitching

July 11, 2016

*photo credit: Tiffany Lucero

By Rebecca Swanson

A grimace here. A grimace there. No one has to know. Lock yourself in a bathroom stall and twitch, take a deep breath and head back to class. I could hide it. Except when I couldn’t.

“What’s wrong with your face?” People asked, in real life, years before the anonymous cloak of internet avatars. Classmates. Friends. I knew these people.

“Nothing,” I said. “What’s wrong with yours?” (I didn’t say, as I held my cheeks steady and retreated again to the ladies’ room, second stall from the left).

They rushed out when I got home, a frenzy of tics, a wild, flapping flock of pigeons startled from a perch. But quieter. They lasted through bedtime and woke me in the night. Gasping, sometimes, when I held my breath over and over. Is that even a tic? My abdomen muscles shredded, despite being an athlete. Do people know that it often hurts? Continue Reading…

Guest Posts, motherhood

Motherhood Meets Art In Motion

May 8, 2016
motherhood

By Diana Kupershmit

She had done it a thousand times before.  When Emma was younger, she would slowly and carefully roll her body down the two steps of our sunken living room, from the foyer of our apartment. But as she got older, she evolved into scooting down on her bottom, with some semblance of graded control. It was a sight to see. Her four foot, seventy-five pound, lanky frame propelled itself by pushing off the floor with the back of her hands while simultaneously pumping her legs, in what  appeared to me as a painfully uncomfortable movement, much like a caterpillar. She never did take to the hand splints that were custom-made for her when she was a little girl, to keep her wrists straight, and to prevent the contractures, that partly defined her life. Even as a small child,  she was not going to be restrained and somehow always managed to remove the limiting splints—using her teeth to pull apart the velcro. A veritable Houdini. I marveled at her determination to get to where she wanted to go, with all of her physical limitations, as she would lower her diapered tush, first one step and then the other, bouncing and closing her eyes in anticipation of the not so soft landing. Continue Reading…

Guest Posts, healing, Illness

Advice: How to Heal from Chronic Illness

April 8, 2016
advice

By Lauren Jonik

You should get more sleep. You should sleep less. You should go out more. You should stay home and rest. You should pray more. No, like this. To this God. You should try this drug. And this one. And this one. And this one. This one, too—it’s via IV.

Did we mention that the IV catheter will be surgically implanted in your chest? And that it will stay there for a year? And leave a tiny scar to remind you, twenty years later, every time you take a shower or wear a bathing suit? You should see this doctor. And this one. And this one. And this one.

Did we mention you will stop counting doctors after the fiftieth one? You should eat meat. You should stop eating meat. You should avoid sugar. Completely. For seven years. You should exercise. You should make sure you don’t overexert yourself. You should sleep only when it’s dark outside. You can’t? Okay, then don’t sleep at all. Continue Reading…