To the Woman in the ER Waiting Room Who Told Me I Was Lucky

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One Sunday evening, I found myself increasing the liters per minute on my oxygen tank. Breathing had become somewhat of a difficulty that night, and my heart palpitations had returned full force. Just 10 days before, I was in the emergency room of my local hospital for the same reason; critically low electrolytes and anemia had resulted in my body working much harder than it should to keep me alive, putting me at serious risk of cardiac arrest.

Already battling a serious autoimmune disease that left me reliant on a feeding tube and supplemental oxygen, these symptoms could become fatal in a matter of hours for a patient like me. I quickly alerted my family members, and we rushed out to the emergency room once again.

Upon arriving, the ER waiting room was flooded with patients waiting to be seen. Some people were on their phones or computers, others were puking into bags and a few were wrapped in blankets, shivering and sweating. It was going to be a long wait for many of those individuals.

A nurse recognized me as I walked up to check in. She took one look at my pale face, heard my exasperated breathing and told me it would be just a few minutes. Before I could even sit in a waiting room chair, I was called back to be placed in a room. The woman sitting in the chair across from me looked up in my direction and loudly said, “Well, aren’t you lucky!”

I looked over to her astonished. Lucky? Was I lucky that I had to be called back within moments of arriving? Was I lucky that I was dying from a serious illness at 23 years old? Was I lucky that I was attached to a feeding tube, oxygen tank and central line surgically placed in my chest?

Lucky is not the word I’d use.

Too out of breath to retort this woman’s ridiculous remark, I followed my nurse back to a room where I was swiftly admitted to the hospital. When I enter emergency care, I never know if I will step back out.

close up of person with breathing tube in

Patients at the emergency room are called in order of severity, which is clearly stated in every hospital by a plaque near check-in counters. The most severe cases must be dealt with before others, so getting called back before another patient isn’t a victory. 

I’d gladly wait hours in an emergency room, because I know all those people called before me are in more critical shape. So to the woman who told me I was “lucky,” I severely hope you are never in need of being called back as fast as I was that night.

Follow this journey on A Day in the Life of a Tube Fed Wife.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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I’m Revealing What My Body Looks Like Without the Benefit of Clothes

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There’s something bizarre about all of us. We all conceal our oddities in our own ways. Most of us get to choose when and to whom we reveal these peculiar dimensions of ourselves. I can hardly remember a time when I had the luxury of choosing.

Regardless of whether I want to expose my abnormalities to the world, my physical appearance spills the beans. Warning: I’m about to reveal what my body truly looks like without the benefit of clothing (gasp). Don’t worry, no nude photos are coming your way. But if I’m really coming out of the “scleroderma closet,” I’m determined to come all the way out.

The heavy makeup that cakes my face tells everyone I’m hiding something. Upon first glance, most people don’t know I’m masking a face scattered with large and tiny red spots, telangiectasia. These red dots and splotches splattered over most of my body are a symptom of scleroderma, the autoimmune disease I was diagnosed with at age 10.

If someone who just met me were to glance at my neck, they might be able to detect the small scar in the center of my throat left behind when I finally had my tracheotomy tubing pulled out for the last time. Most people don’t notice the scar, but I see it all the time. If only it was still 1984, when turtlenecks were all the rage.

Then there are my arms. I love Chicago winters because this season allows for my clothing to partially camouflage my skinny limbs that resemble bent tree branches. If my arms are bad, my hands are worse. I simply can’t hide my hands. Each permanently bent finger is sprinkled with telangiectasia (red spots), my own unique trademark.

scleroderma body image the mighty

Next, there’s my stomach. Even with baggy clothing, it’s obvious that I’m trying to hide what’s lurking underneath the fabric of whatever shirt I’m sporting. I know many 40-year-old women who’ve had two children may not want to be seen in a bikini, but I promise I’m not just talking about a little extra flab. My midriff is a horrifying roadmap of scars and other surprises. With each scar lies a reminder of the seven months I lost while hospitalized.

First, there are the C-section scars. These scars don’t bother me a bit; they remind me of my two most precious joys, my son and daughter. Just north of my C-section scare dangles my 9-inch ostomy bag, a constant reminder of the catastrophic emergency colectomy performed less than three weeks after the birth of my daughter. When I empty the contents of my ostomy bag, I try to block out the vision of my mother turning ghostly white and my husband looking as if he might pass out. These visions of my loved ones being told the 48 hours after my colectomy would determine if I lived or died still haunt me. I try to shut out the fact that my school’s administration had grief counselors on standby, just waiting to counsel my students and colleagues should the worst happen.

Next are the really bad scars, like the 9-inch jagged scar that zigzags across my left lower abdomen and curves around my side. It’s a reminder of my darkest days. When I see it each morning, I can’t help but sometimes hear the stampede of the transplant and crisis team racing into the operating room in a frenzied attempt to save my life. I try hard not to picture my mother and brother reciting psalms over my half-dead body.

Yikes! The above paragraphs are dark and heavy. It’s hard to believe, but I’m actually a pretty upbeat person. Take a moment and remember that I didn’t die and have made a remarkable recovery. Yippee! Let us now continue our delightful tour of my glorious physique.

My legs are skinny (like I wonder if that woman has a tapeworm skinny) and dotted with more telangiectasia. Finally, there are my feet. I walk with a slight limp. After lying immobilized in my ICU bed for so many months, my feet hung like weeping willows. ICU neuropathy plagued my feet with an intense sensation of a thousand fiery needles relentlessly piercing them. I was often told I may never walk again. After nine months of rigorous inpatient and outpatient physical and occupational therapy, I’m thrilled to be left with just a small limp and neuropathy.

After reading the above description, you may be wondering what the hell happened to me. My story is so complicated I could write a book about it — in fact, I have written a book about it. I’m an ordinary person who, with the support of hundreds, survived some extraordinarily bad crap.

So why do I want to offer the public a glimpse into how I glide through life with my gorgeous face and smoking hot body? All too often women (and some men) allow themselves to be defined by outer beauty. Our feelings of self-worth shouldn’t be based on our appearance. With this blog, I’d like to explore a different approach to measuring our value in society. Instead of using our time worrying if we‘re too fat, too ugly or too whatever for the world to love us, why don’t we focus on more important issues, like how to be a nice person, make people smile or even work toward world peace.

I judge myself and others based on outer appearance constantly. I’m no saint; I just think we all should try harder not to “judge a book by its cover.” I’m not claiming to be the ugliest person on the planet and hoping for your pity. I know there are people far less aesthetically blessed than myself out there. I simply take issue with our society’s obsession with outer beauty and want to combat that. On many levels, I’ve reconciled that my appearance does not reflect who I really am. I hope other readers can find comfort and inspiration in that.

A version of this post originally appeared on Comfortable in My Thick Skin.

The Mighty is asking the following: What’s one moment you saw your disability and/or disease through the eyes of someone else? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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To Anyone Who's Ever Illegally Parked in a Handicapped Spot

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On an icy and frigid Chicago winter night at the indoor sports dome where I pick up my son and his friends from soccer practice, some lady was illegally parked in not one but two handicap spots. This parking lot is a chronic nightmare with parents dropping off and picking up kids simultaneously for practice. There’s always a bunch of children darting between cars sporting nothing but soccer shorts in subzero temperatures. Any civilized regulations regarding social conduct and parking lot etiquette do not apply at this sports dome. It’s every man, woman and child for themselves.

Since I was temporarily paralyzed in 2006, I’ve been issued a permanent handicap placard for my car. I try hard to only use my placard when I genuinely need it. My doctor qualified me as disabled because:

1. I have neuropathy in my feet that makes walking long distances challenging and painful (it feels like running a marathon in stiletto heels that are three sizes too small).

2. Like most scleroderma patients, I have Raynaud’s syndrome. This means my hands and feet are extremely sensitive to the cold, and I experience piercing pain and purple fingers when exposed to the winter elements.

3. I went through almost a year of physical and occupational therapy to learn to walk independently. Doctors told me I may never walk again, so I’m thrilled to walk slowly with a slight limp. However, my balance is off, I have foot-drop and a funky gait. Walking on icy roads in the dark in my sexy orthopedic shoes is not a recipe for success.

Without fail, every time I’ve gone to pick up from soccer practice, someone is either blocking access to the handicapped parking or people without placards have taken all the handicapped spots. A month ago, a woman in a fancy luxury car was hogging two handicapped spots. She was sitting in her car with the motor running. For the first time, I grew a pair and got out of my car to confront her. I put on my hazard lights, endured the biting cold and marched over to her hotsy-totsy car (I can’t really march, since ya know, I’m disabled, but I would have marched if I could). Here’s how it went down:

I approached her car, and she rolled her window down a crack.

Me: Hi, I see you’re parked in a handicapped space, but I don’t see that you have a placard or handicapped plates. Are you actually handicapped?

No response from Miss Fancy Pants, so I continued.

Me: If you’re not handicapped, can you please pull out of this spot? I am handicapped, and it is very difficult for me to walk long distances in the cold.

The woman looked at me, sighed and said, “OK…”

There was no sign of remorse or any hint of an apologetic tone in the two syllables she uttered.

Me: “Thanks so mu—” her window rolled up before I could finish.

She did back out, though, which allowed me to park there.

Fast forward to a few weeks later. I’m again picking up from soccer, but this time, I couldn’t enter the area with the handicap spots because some dad in his oversized Land Rover was blocking off the whole area. I was wedged between cars that all wanted to exit the lot. I couldn’t move forward because Mr. Land Rover was blocking where I needed to go. I couldn’t back up because there was a line of angry soccer parents behind me. I tapped on my horn and motioned to the handicap placard dangling from my rearview mirror. Mr. Land Rover started mouthing and gesturing at me. I’m no lip reading expert, but the gist of what he was mouthing was, “I’m not moving!”

We exchanged angry facial expressions as I kept motioning to my handicap placard. In the midst of this delightful exchange, a mom next to me who I’d only spoken to once or twice rolled her window down and politely asked me to pull a little forward so she could get out. I unleashed a rant and explained that I was waiting for the Land Rover to move because I needed a handicap spot. I went on to say something ridiculous to this unsuspecting mom, like, “People are not very nice here!” Harsh words, I know.

Finally, Mr. Land Rover got out of his car and headed toward me. He looked furious. I rolled my window down and said, “Sir, I’m not trying to be difficult, but I am handicapped and I can’t physically walk long distances in these weather conditions. You are blocking my access to a handicap spot.”

Mr. Land Rover pretended as if this was brand new information to him (like I hadn’t been wildly pointing out my handicap placard for the last few minutes during our vicious exchange). He sheepishly said something like, “OK, hang on a minute.” He walked back to his SUV and miraculously moved, allowing me to pull in.

I found my son and his friends and delivered them all home. After my son got into the shower, I began to weep uncontrollably. The reasonable adult voice in my head said I was being absurd. I should not let a few jerks out there reduce me to child-like sobs. I couldn’t turn off the waterworks. It was as if Miss Fancy Pants and Mr. Land Rover had poked a bear of emotions inside me. Once they came tumbling out, I couldn’t stuff them back in. I was inconsolable and irritated with myself for being so upset. I’ve thought about this for a while and determined I was justified in having such an intense reaction to two obnoxious people.

During my encounter with Mr. Land Rover, everyone in the parking lot was honking at me to move. It was as if they thought I was purposely trying to be annoying and disruptive. Why wasn’t anyone honking at Mr. Land Rover? I only wish I had the capability to park far away and scale snow mountains to pick up my soccer carpool, like most parents. Why didn’t Mr. Land Rover understand that? Even after a year of rigorous physical rehabilitation, I was still told I may never drive again without adaptive devices. I had to take a four-hour driving test and undergo three hours of cognitive testing to earn back my driver’s license. I wish there was some way able-bodied people who take or block handicap spots could appreciate that.

I try not to feel sorry for myself too often, but that night, in between sobs, I wallowed in self-pity. I lamented over the fact that everything I do is so much harder for me than for most. I can’t even open a bottle of water independently! As I’ve said before, sometimes we need to take a dip in the pity pool. Most days, I realize how lucky I am. It takes a lot to catapult me into uncontrollable weeping.

So, to anyone out there who has ever parked in a handicap spot illegally, please don’t do it again. To all of you law-abiding citizens, thanks. No matter which category you fall under, please share this one for the people out there who aren’t lucky enough to walk from their car and ask Miss Fancy Pants to move.

This post originally appeared on Comfortable in My Thick Skin.

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When a Woman’s One-Word Response to My Disease Angered Me

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One rainy Saturday night in February, I stood over a sink in a public restroom, silently washing my hands. I looked over to see a woman at the sink opposite of me; she seemed to be reviewing my reflection in the large bathroom mirror.

Her gaze hovering intently on the pale pink Power Port scar above my right breast, and the feeding tube delicately hung over my skirt. Locating her gaze to meet my eyes, she very frankly asked, “Do you have cancer?”

I shook my head and replied that I did not have cancer, but a rare disease called systemic scleroderma. The woman without a word shut off her sink, reached over to the paper towel dispenser and then turned back to me. “Oh,” she replied, and quickly left the restroom.

I stood wavering between a few different emotions: anger, hurt, disappointment and unbelief. Did my disease really deserve nothing better than a simple “Oh”? I pondered for a moment what this encounter would have been like if the illness I was stricken by was in fact cancer. This stranger probably would have told me that I was brave, and she may have even shared with me stories of loved ones she knew battling cancer. There most certainly would have been a tear shed, and even a silent hug, followed by a “But you’re so young!” and a sincere “Good luck!” Why is it that only one disease seems to command the compassion of others, while the rest are lost and forgotten?

A photo of Chanel in a hospital gown in the hospital

The answer lies quite simply in our media. With recent releases such as “The Fault in Our Stars,” “Me and Earl and the Dying Girl,” “Chasing Life” and “Red Band Society,” disease seems to have recently stormed the media spotlight. Suddenly illness is a hot Hollywood theme, in one fluid motion leaving vampires who sparkle, ridiculously attractive young werewolves, and supernatural romance in its wake. While many people would argue that it brings media attention to those with medical conditions, some of us are not so swayed. The media portrayal of disease is extremely limited, focusing almost exclusively on cancer.

In the Hollywood world, cancer is portrayed to be a disease that only afflicts devilishly handsome young men and women who all face it valiantly with sarcasm and humor. Their stories are full of “cancer perks,” getting away with shenanigans, and young, tragic romance, leaving at least one main character dead. Think on this for a moment. If a “Fault in Our Stars Two” was created, would you watch it? Before you jump to yes, know the plot. It consists of Hazel, after the devastating loss of her love, living everyday life as someone who is terminally ill. It would probably include a lot of Netflix watching and days spent in bed. Eventually her recurring episodes of fluid-filled lungs would increase; she might suffer horrendous pain that no opiate could ever relieve.

No one is interested in watching endless suffering; viewers want a cure, or a quick demise. Chances are, due to that audience preference, you will never see scleroderma, lupus, multiple sclerosis, mitochondrial disease, Ehlers-Danlos syndrome, myasthenia gravis and so many others life-threatening illnesses portrayed in film. These diseases are what you call chronic and degenerative; this means the patient might have these conditions with no hope for a cure their entire life.

Similar to cancer patients, we are bound to oxygen tanks, feeding tubes, trachs, central lines and other medical devices. We take large amounts of prescription medications, have weekly procedures, surgeries, and tests, attend support groups, struggle with severe pain, anxiety, and depression, mourn over the lose of our former lives and unfortunately, must also watch as the friends we have might die. Many of us actually go through aggressive chemotherapy as treatment for our disease.

Unlike these movie and TV portrayals of illness that have become so popular, chronic illness sufferers receive no “cancer perks,” as the cinema likes to call it. All we receive are snide comments about how we don’t look sick, that we shouldn’t be parking in handicapped spaces, and that we would be healed if we only changed our diet and lifestyle. We sometimes even get told, “At least its not cancer!” The world knows what cancer is; however, the majority of people have no idea what beholds a chronic disease sufferer because they have never been exposed to it. Can we truly blame people for their lack of empathy when all the media feeds them are stories centered on one disease?

So, to the woman in the restroom who decided my disease wasn’t enough to even generate a generic positive reinforcement, I do not hold you accountable. Nevertheless, as a patient suffering from an extremely debilitating, and eventually terminal illness that has destroyed my life, I ask that you please recognize that any disease, whether you’ve heard of it or not, deserves compassion.

A version of this post originally appeared on A Day in the Life of a Tube Fed Wife.

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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.

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Why I Feel Sorry for My Chronic Disease

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Dear Scleroderma,

I feel so sorry for you.

When you picked my life to destroy you probably thought, “This is an easy spot, I’ll bring this girl’s life to shambles. She will be overwrought with grief. She will give up quickly, losing all of her beliefs.”

Slowly but surely you took everything from me. I become a husk of my former self. You made me an absentee.

You stole my college scholarship, you seized my independence, you ensnared my body and life, and you abducted my ability to be an energetic, helpful wife. You petrified my family and drove many to insanity.

You, sir, have absolutely no humanity.

You probably thought when becoming my unwelcome guest, “I will dismantle this girl’s ability to function, or feel the slightest bit blessed. She won’t even be able to eat! I’ll torture her so much, she will do nothing but hang her head at her feet!”

You probably believed I would give up without a fight, a broken vessel with no reason left to wrestle this shadow of a life haunting me every day. You probably thought, “Yes, how could she possibly be happy this way?”

Well, Scleroderma, I am here to tell you, my life is still all right. You picked the wrong woman, for this girl has great fight.

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She doesn’t give up easy just because life is no longer breezy. She will never hang her head in shame, she will stand tall and proclaim, “I am a scleroderma warrior, I don’t have myself to blame.”

You may have stolen my body, my experiences, my youth, but I am here to tell you I know the truth.

Happiness is a choice, it is my decision, and you cannot take that from me, for I always keep a back up provision.

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So, Scleroderma, give me all you’ve got.

Let’s see how I can make you feel distraught.

Even though I often feel lost in the abyss of the shattered world I dearly miss, you won’t stand a chance, as I will always be prepared for your next enemy advance.

I know in the end you will eventually take me, but just know this: you, Scleroderma, will never, ever break me.

Chanel T. White

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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