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The Day I Stopped Hiding My Feeding Tube

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I’ve gotten them all: the blank stares, the whispered rumors, the occasional looks of pity or even the snare of disgust when I must attend to my feeding tube in public.

You see, the average person does not witness medical devices such as feeding tubes every day, especially not on someone who looks like a healthy young adult.

Nine months ago, my digestive system failed as a side product of my chronic and degenerative autoimmune disease called systemic scleroderma. This disease has ravished my body, paralyzing my organs and leaving them ill-equipped to manage the consumption of food. At all times, I’m attached to a small backpack that houses my medical pump and formula, slowly regulating my nutrition.

When people go through radical life modifications such as this, they seem to lose their identities in the eyes of those around them, suddenly being drowned-out by their disabilities. I was no longer “Chanel” in conversation; I was “the girl with the feeding tube.”

At first glance to the general public, I’m nothing but a medical device. My features were no longer what held their gaze but instead a small piece of extension set and the purple “Christmas tree” surrounded by an AMT clamp.

As I went about my daily activities after placement, the typical bystander’s lack of decency was horrifically apparent. The shameless stares followed wherever I went, piercing a hole through the small line that silently slipped under my shirt, connecting my backpack to my feeding tube.

I met my feeding tube with animosity for some time due to this. Somehow this inch-long piece of plastic had managed to steal my appearance. Everything that made me outwardly seem like a confident young adult was stripped from view. The body I kept physically fit, the wardrobe I’d picked to express my individualism, the cute new hairdo I’d found on Pinterest, the impeccable application of a wing tip with my favorite liquid eyeliner… none of those things seemed to exist when this small piece of tubing was in sight. It was all they could see.

Many times I hid my tube out of view with medical tape or a special restraining belt. For a brief moment those small devices made me once again seemed like any other young adult out for a day of shopping and chores.

One day as I walked through the parking lot of a local grocery store, struggling with heavy bags, my tube managed to flop out over my skirt; the tape that normally held it to my body had come unstuck in my struggle. I slowly set down my groceries and immediately attempted to re-tuck my tube out of the public eye.

Too many times I’d been the recipient of unwanted stares that day, too many times been on the receiving end of whisperers shared between couples in that crowded grocery store.

I looked up to see a woman walking to her car, her eyes glued to my tube.

I met her gaze for a moment and then dropped my eyes; I didn’t feel like being the character of someone’s imagination today. Before I could manage to fix my situation, the women had made her way to stand just a foot in front of me. She looked me straight in the eyes and said, “You are a beautiful, strong young woman and more people should tell you that.” She promptly turned with a smile, retuned to her car and drove away.

I stood frozen, my hand holding the trusty medical tape I had come to rely on. I watched that women drive away and stood looking down at that tape for what seemed like forever. My delicate tube flopped over my skirt, clearly in view.

That was the last day I ever taped my tube out of site.

The last day I considered my tube the enemy of my identity.

This woman, whoever she was, made me realize that my life sustaining medical device had not stolen my appearance but added to it a story. A story of a young woman who deals with daily struggles, pain and distress, yet still manages to do her hair, apply her eyeliner and wear her favorite dress. My feeding tube became a trophy that day of the battles I’m facing, the battles not visible to the naked eye. This kind stranger assisted my comprehension that I could still be a beautiful woman even with an obvious disability.

Now as I venture into the world, I leave my feeding tube visible with no attempt to disguise its presence. I wear it proudly as a souvenir of the life I still manage to live through seemingly unbearable circumstances.

Originally published: March 23, 2015
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