Thursday, February 28, 2013


Have you ever had the desire to put on a disguise and walk among the people you know and not be recognized--to see their reactions and how they perceive you?  It is as close to invisible as you can be.  It’s also like hiding in plain sight.  Imagine the dowdy girl who suddenly gets a beauty make over, or, for an experiment, the beautiful woman who chooses to dress down to see how the world distinguishes her?  Now, imagine donning the garments of another culture out of necessity?  As odd as that may sound, I had to do just that.

Due to a rare form of Lupus, from which I was suddenly “allergic” to ultra violet light, I was forced to dress in a sari and veils.  My reaction to UV rays was that of bleeding, scarring and pain, which caused me to make this decision, though not lightly.  It was more out of desperation.  The sun had made drastic changes in me.  My olive skin was now fair with red blotches.  My black hair had fallen out, due to a combination of the chemo treatments and the fact that the sun had made my hair naturally thinner.  Even without the sari and veils, lupus had unwittingly changed my looks in a matter of a few years.  The reactions to my appearance due to my illness were awful.  The looks of shock and pity had become more than I could take.  And then, there were the things people would say, things such as,  “What’s that all over your face?”  These people were strangers to me.  One woman in the grocery store tried to rub my face by spitting into a Kleenex and grabbing me when I wasn’t looking.  The pain from that lasted days, never mind the unsanitary aspect of someone’s saliva on my open wounds.  With the skin issues progressing rapidly, my dermatologist told me we needed to do something more.  I needed to get less UV exposure and that included fluorescent lighting.  Imagine living in a world of darkness.  With the new regulations on incandescent lighting, a dark future was inevitable for me.  I was frustrated, angry, and determined.  As a woman who has run her own school for the past twenty years, these new challenges were complicated, but I refused to walk away without a fight.  What I didn’t expect was to find the answer in the most unpredictable place.  

One day, while in a convenience store, it came to me.  Standing behind the cash register was a beautiful woman.  She was dressed in a sari and had her whole face covered, except for her eyes.  I was mesmerized by her presence and awed by her grace.  She was a middle-aged woman like myself, and, for a split second, the ugly claws of self-pity took hold of me: I would never be allowed to grow old beautifully and gracefully.  Over a period of time, that woman and I became acquaintances.  I would tell her how beautiful her outfits were, and she would thank me.  Eventually, I told her why my face looked the way it did and the dilemma I had dealing with the UV rays.  She was kind and sympathetic to my plight.  Then, one day out of the blue, it came to me.  I could go through life explaining all this and feeling sorry for myself, or I could choose to live a normal life in the world…in the sun.  The next day, I purchased a beautiful lavender gown with a matching, soft cotton scarf.  With the scarf, I was no longer able to use a hat, so I also purchased a wig.  Because the black wig I tried on washed out my now ruddy face, I bought a blond one.  It was if I were standing in front of a mirror and yet someone else’s reflection looked back at me.  It oddly reminded me of every suspense movie ever made, when the unexpected visitor is viewed for the first time in reverse, through the mirror.  I found myself smiling under my veil, since it seemed I was given a new lease on life.  I was now able to go outside, and, at the same time, I was able to do it without anyone gazing at my face and causing me to feel uncomfortable.  Or so I thought.  

One of the first places I went was to the hospital In Boston where I get treatments.  I walked through the halls unnoticed, since cultural diversity lives openly and freely in a big city hospital.  I came face to face with a woman from India in the ladies room.  She smiled and nodded, and I responded in kind.  But the reactions I got from people changed drastically, as I got further from the city.  The responses differed dramatically between age bracket, gender and ethnic background.  Little girls gazed upon my robes with a look of awe, as if suddenly Princess Jasmine had walked into the room.  Some were brave enough to touch them.  Men would linger with glances of wonder at the mystery woman who was behind the veils, making me realize that females don’t need to wear less to entice.  This was a huge change for me, after being gawked at by children and adults alike as a possible burn victim.  I thought this was good. I had turned a negative into a positive. Then came the flip side to being a stranger in your own hometown.  The suspicious looks began to become apparent to me.  These also crossed all forms of age and gender.  I had heard, as a child of the 60’s, that prejudices stem from fear.  It wasn’t until this time that I truly understood those words.

Walking into a local drugstore, I ran into a friend of mine.  He was the father of a student.  We were chatting softly to each other, when a man approached me with his hands in the air.  I looked at him, puzzled, thinking he was in distress health-wise. The father who was with me, however, fully understood what he was doing.  The man turned to me and said, “You don’t have a gun, do you?” at which point, that father put his arm around my shoulder and led me away, saying clearly for everyone to hear, “Don’t worry about him, Debra…he is ignorant.” 

A friend of my husband, whom I have known for well over twenty years, asked me every day what it was like to be a Muslim terrorist.  One day I couldn’t take it anymore and set him straight about the rudeness of his statement.  He just laughed…I just walked away.

My worst profiling episode came from airport security.  On a flight to Australia to attend a Lupus event, I was stopped at LAX and searched. Although I carried paperwork from my doctor stating my health issues with UV light, I was forced, in front of everyone, to remove all my veils and my wig.  I told the young man I was on chemotherapy and asked if he could please take me someplace to complete this task in private.  He refused my request in a very stoic voice with an unaffected attitude.  Standing in a line of hundreds of people, I had to reveal to all in the terminal the misfortunes of my disfigurement.

Over the course of two years, at night when the lights were out and I lay quietly in bed, I would think of the fact that every minute of my day felt like a challenge. With every solution, there seemed to be another problem. Then Malala Yousafzai hit worldwide news with her bravery and courage to fight for the rights of all girls to an education.  Her angelic eyes and strong spirit were clearly visible after a brutal attack by the Taliban.  This young child will never know how many lives she touched that day.  She brought perspective to my challenges.  Standing in front of the mirror, I wrapped my head in my scarf in tribute to that young child.  I paused was time to face the world.  I walked once again out into the light.


  1. Hey Debra,

    I too am an artist ( Also a holistic nurse. I do the art work to support my nursing as there is little money currently in the holistic nursing right now. There is a lot of satisfaction thought as my outcomes are better than in the hospital.

    One of the things learned in the holistic field is called the Water Cures Protocol. There is even a book on it and using it to treat lupus. (

    So far, I have not had a lupus patient but it has helped everything from chest pain not relieved by 2 nitro to very high blood pressure 210/110 in my patients.

    One of my newest patients was sent home with inoperable brain cancer. For the first time in years he has no headaches and his eye sight has come back. Another had his prostate surgery canceled as his numbers were so good.

    Don't know if it will work for you or not but hope it is something.


    Jonathan Steele

  2. Nicest information!!! I'll be enchanted to greatly help due to what I've learnt from here. MacFarlane Gro