Now That I’ve Come Out Of The Scleroderma Closet, I’ll Get Back In and Put Some Clothes On!

Coming out of the scleroderma closet

There is something bizarre about all of us. In our own way, we are all concealing our oddities. 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 am about to reveal what my body truly looks like without the benefit of clothing (gasp). Don’t worry, there are no nude photos or ‘adult material’ coming your way. If you’re wondering why I am exposing my vulnerability and sharing such a personal peek into my obvious imperfection, keep reading; I promise I have a reason. Hey, if I am really coming out of the “scleroderma closet” (see my ‘about’ page here), I’m determined to come all the way out.

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

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 that was left behind when I finally had my tracheotomy tubing pulled out for the last time. I try not to recall being conscious and feeling the piercing pain of the trachea tube being plunged through my flesh in a desperate effort to save my life and enable me to breathe. Most people don’t notice the scar, but I see it all the time. If only it were 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.

Next, there is my stomach. Even with baggy clothing, it’s obvious that I am trying to hide what’s lurking underneath the fabric of whatever shirt I am sporting. I know that 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 I was hospitalized. First, there are the C-section scars. I know that is par for the course for many women. 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 dangles my 9-inch ostomy bag. The bag is a constant reminder of the catastrophic emergency colectomy that was performed less than three weeks after the birth of my daughter. When I empty the contents (I’ll save you the trouble of Googling…. the contents are liquid poop) 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 that 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.

Dispersed above and below my ostomy bag (remember, that’s the bag of crap that serves as my constant companion), sit many large, circular, crater-like indentations. Each indentation represents the place where tubing was punctured through my stomach and attached to enormous bags in a seemingly futile attempt to drain the massive amount of infected fluid that invaded my abdomen in the spring and summer of 2006.

Next, there are the really bad scars. The 7-inch vertical scar that slashes through where my belly button used to be, reminds me of my third surgery. That surgery left me attached to several suctioning machines that whirred loudly in a feverish effort to rid my belly of the colossal infection that continued to ravage my midsection.

Finally, the 9-inch jagged scar that zigzags across my left lower abdomen and curves around my side is 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 (not good, model skinny…more like I wonder if that woman has a tapeworm skinny) and dotted with more telangiectasia. Finally, there are my feet. When I walk, a slight limp can be detected. 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 piercing them relentlessly. I was often told that I may never walk again. After 9 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 am 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. I oppose the notion that our feelings of self-worth should be derived from 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? What other issues you ask? I dunno—how to be a nice person, make people smile, or work toward world peace?

I have a habit of saying something bold and then immediately offering a disclaimer statement (my work colleagues will back me on this). I’ve decided to end all my blog posts with disclaimers about my assertions. This is my own freakish way of beating any critics to the punch. Yes, I’ve written one post and am hopeful enough to envision someone may actually want to read what I’ve written and then criticize it….dare to dream.

Disclaimers:

  • 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.” Sorry, I’m a reading specialist and could not resist using that archaic expression.
  • 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 have reconciled that my appearance does not reflect who I really am. I hope other readers can find comfort and inspiration in that.
  • I’m not saying, Boo hoo, I almost died at the age of 31, so that makes me so very wise about life, you should read my blog and soak in the wisdom that oozes from my every word. However, escaping death by the narrowest of margins at a young age has offered me some clarity on how to live a meaningful life.
  • I have never actually done anything to work toward world peace, but I do try to be nice and make people smile.
  • This post is too long and depressing. Stay tuned for my next post when I share the glorious memories of my high school gym class experiences.

 

 

13 Comments »

  1. Great piece, Lisa. I cried and laughed out loud all within 5 minutes. You are one of the sweetest people I have ever met. Beautiful both inside and out.

    Like

  2. Lisa, you are truly a very special and beautiful person!
    I just read a couple of your blogs and I find them filled with such detailed info of your battle with scleroderma coupled the unique touch of wit and humor, truly remarkable!
    Thank you for bringing attention to this disease, your creative way of expressing yourself gives all of us much more understanding of life with scleroderma.
    I look forward to reading much more!

    Like

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