Tuesday, June 28, 2011


First published in The Lupus Magazine

Is the energy that propels us to reach for things we need as an infant…and want as an adult. Some refer to this as identity.

The Oxford English Dictionary has an abundance of meanings for this word. For the purpose I am using it here it is defined as the following:

“The fact of being who or what a person or thing is”

In other words, who we are in conjunction to, what we are. Who we are can be defined in so many ways. It could be as simple as the achievements one has accomplished or as complicated as the way in which we perceive how we look or act to ourselves and the people around us. Either way we have a picture in our minds as to who we are, what we do and what we look like.

In turn, this affects who we end up associating with and how we carry ourselves. It is difficult to define Identity without also discussing character. A human element that is most difficult to see in ourselves as opposed to others. We know it is there. We hope it is strong and to be admired. It is the strength and originality in a person’s nature.

Most people are happy with their sense of self and identity even if they are unsure about their character. They have adjusted their identity to work for them in their own way. It creates an image in their minds eye that can be called upon at will. They support the self with clothes they wear and jobs they may hold. Over time the self is reinforced and the result is a much better rounded individual. It is the foundation we use to raise a child. It is at these times that the propellant of one’s self can do great things.

But what happens if that self is completely changed by illness? For most Lupus patients, it is often after the self had been fully formed. Where does the old self go? Is it still there hiding among the rashes and hair loss? Does it lurk behind the now awkward gait of our strides? Is it now only a memory of the jobs we used to do?

This was the question that was forefront on my road to understanding this illness. When I am sitting quietly I still see in my mind’s eye that self I have always known. The one with the olive skin, long straight black hair, hazel green eyes with long lashes. I am confident and happy. I have the feeling that I can do anything as long as I believe I can. I am successful in my work and in my relationships. I see myself respected by others, and loved. But most of all I am a woman and every definition that surrounds that word. I am content. But then I look in the mirror, and I don’t know the person looking back at me. She is without hair, has a ruddy complexion, no eye lashes or eyebrows to speak of and has scaring all over her face from discoid. What now defines this woman as such? I want to cry for her when I see her. Some may think it would do me some good…but I don’t…at least not yet.

When my appearance first started to drastically change there was one person who gave me strength. This strength was coming from a most unlikely source. From someone I had never met. From someone we all know. No it wasn’t God. I follow no organized religion. It was from a woman who was in the music industry for many years. A woman who could change her appearance to keep up with the changing times so as to stay on top. She worked very hard at this and it was often discussed in the media. Was it a character she was creating or was it her character that created it? Believe it or not that singer was Madonna.

Only a few years my senior, I watched her as she morphed herself from one generation to the next. Today she is a sophisticated beautiful woman who could put anyone to shame. Never a huge fan of her work, (although I did like some of her songs) I was always fascinated with what she was going to do next. I was drawn to her in that way. Back then I looked to her as a role model in that age was only a number. Little did I know that what I was actually getting at the time was an education that I would need in years to come. No, I didn’t want to look like her. I just wanted and later needed her chameleon attitude. A position I found that would take awhile and courage to obtain. Like most conscious transitions it first appeared to me as thought long before it was acted upon. That thought brought self doubt.

What would people think if I completely changed who I was on the outside? What if I run into someone I know from my past and they don’t recognize me. Will I explain it all to them? Will I feel stupid and therefore reflect that. And then there was the, “Why do I even care what people think?”

Well, I will tell you why…because we do…it is human nature. I knew I had to do something but I didn’t know where to start. So I put it off yet again, until one day I was given the gift of courage from another unlikely source.
I was still teaching at the time that I was dealing with all this. Working with children who can be painfully honest was both a curse and a blessing.

One day a student of mine that was 10 years old came into class and said she had a present for me. Her name was Isabel and in her hand was a hot pink acrylic wig. This young girl and I had always had a special relationship and often I felt she was much older and wiser than her years. We laughed when she pulled it out of the bag, and taking off my hat, I put it on. The class got a kick out of it and I wore it the rest of the day. I remember it was terribly uncomfortable. When parents came into the room I acted like it was my normal hair… to the delight of the children. It was a good time and at the end of the day I went to hand it back to her.

She took me by the hand and led me to the back room. Still holding my hands she looked in my eyes and said, “Debra, it is time.”

I knew what she meant and a lump caught in my throat. She was right. And as most kids her age do …she smiled, skipped out of the room and the magical moment had passed. Although I had known her many years, it was at that time I truly saw her character.

The next day with many tears and yet determination I bought a wig. I first tried on ones that I was familiar with; long straight black hair… I even tried on short black ones. But with the new pinker completion of my face it made me looked all washed out. So I had to go with something completely out of character for me.

I went to a beautician and she showed me how to camouflage my scars. I was also told recently that I needed to cover my face completely because of my discoid. Using a veiling I was better able to protect my skin. Today when I look in the mirror I see a new self. She is blond and exotic looking… her smiling eyes peer back at me under the mystique of the veil… and the first self I had smiled back; because she never left. It was her strength that gave me the courage I needed; the strength of my character to pull it off. And by the way, no one recognized me.

It was like a new beginning, a fresh start; and a sense of control with this often uncontrollable disease.

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