Speaker Presentation: The Me that Used to Be
by Danielle Alexander
Editor’s Note: Danielle Alexander was the featured eczema patient speaker at the Fourth Annual National Eczema Association Patient Conference.
My life began on November 4, 1969, in Ft. Wayne, Indiana. I was born at 7:29 p.m. in Parkview Memorial Hospital to James and Mitsi Alexander. I was the third of four daughters. It was a normal birth, and I was a happy little girl. Then two months after my birth, eczema appeared.
There were some issues from the beginning. I wouldn’t take my mother’s breast milk so I started to lose weight and I was only six pounds when I was born. The doctors worried about that, and my mother was really concerned. When I started to lose weight drastically the doctors were really concerned. Then the rash appeared out of the blue. My mother was really concerned because, with the weight loss and the rash, she didn’t know what to do. My dad was always on the road he was an entertainer so she was left with a baby who never cried and yet there was a rash all over me, except on my face. The rash never affected my face.
My mother took me to see a doctor. The doctor didn’t know what the rash was so he suggested that she take me to a dermatologist. The dermatologist diagnosed me with atopic dermatitis.
The challenge was to feed me. What do you feed a child who won’t take her mother’s milk? They tried all kinds of formulas, and I rejected them all. Then they tried goat’s milk. I actually accepted goat’s milk, don’t ask me why. Then, I started rejecting the goat’s milk, so we went through a cycle. Then they put me on rice milk. I was initially okay with rice milk, and then I started rejecting that too. For a while it was just a series of acceptance and rejection, acceptance and rejection. Then finally I was put on soymilk and I stabilized, so soymilk became a staple of my life. To this day I hate soymilk.
We’re going to travel a little bit further in the time capsule of the me that used to be. As I grew up, there were other issues. I remember that when I was about two years old I always wanted to take a bath with my sisters but I could never do that. They would have their cute little bubble baths and they would play with their little duckies, but I couldn’t be in the bubble baths and I couldn’t burst the bubbles be- cause I could only take a bath once a week and I couldn’t use any soap. My skin was so inflamed that it was just raw. My mother was constantly wrapping my hands to stop me from scratching, but I would still figure out ways to scratch. I was so creative. I remember feeling quite victorious over my mother in finding ways to scratch. She’d cut my fingernails and toenails, yet I would still wake up with bloody sheets, I just had to scratch. You all understand that. That itch was just so maddening that I had to do whatever I had to do in order to pacify it. As I got older I called it that pleasurable pain because you know it’s going to hurt like crazy but you have to satisfy that pain, you have to satisfy that itch that just never stops. So that’s what I did. And I never did get to take a bubble bath with my sisters.
The most painful time for me came when I was seven years old and my parents divorced. It was a major adjustment
for me because I was such a daddy’s little girl. My dad went away and stayed away; he never came back into the family after that point. And my eczema got worse and worse and worse.
Finances were really difficult, and back in the ’70s when I was growing up, the medications weren’t as great as they are now. I was put on massive steroids when my mother could afford the medications. I called Prednisone the “poison of choice” because I had extreme flares, my eczema was really bad, and for a time I lived on Prednisone and the topicals, the tar, the horrible base cream that turned my skin gray. I had to wear white clothes but it was always gray because of the tar cream.
The age of seven was bad in other ways too. Not only did my parents divorce but my maternal grandfather died—and I had loved my grandpa. Then a week later my maternal great grandfather died. I lost both grandpas within a week of each other. And I shut down. I shut down completely. I couldn’t take the pressure of life, divorce, and death. I’ve never in my life experienced such pain. At seven you shouldn’t have to bury two grandpas and deal with the separation of your family and then have to face the fact that you’re different, your skin is not beautiful. I looked at my family at my sisters with their perfect, beautiful skin and my mother with her flawless, beautiful skin. Heck, even my dad had perfect, beautiful skin! Men aren’t supposed to have perfect, beautiful skin but my dad was an entertainer, he was always flawless.
I thought, “Why me? Why do I not have perfect, beautiful, flawless skin?” I remember that my mother always said, “Danielle, God has a special purpose for your life. There’s a reason that you have eczema.” I couldn’t hear her, though, be- cause in my mind the eczema was total punishment. Why should I have to be the special one? Why should I have to be the one that has to suffer through this misery every single day? I knew that every day I would wake up to a bed filled with nasty, horrible scabs, and every day I would have to endure kids taunting me and telling me that I was not good because I smelled like infection, because I looked like “alligator-skin girl.” (That’s the wonderful nickname they gave me when I was in elementary school.)
Why did I have to be the one to endure the pain and the suffering? Every day my mom would tell me, “Danielle, you have a special purpose in this life. We don’t suffer for nothing. God made you for a reason. He does not make mistakes.” Every day she would encourage me to find my purpose. But I couldn’t see it. The pain ran too deep. As I looked at my horrible, ugly skin all I could see was misery.
So I went on and I lived my life and I thought that I was not good enough, I thought that I didn’t measure up. I would look around at other people with their beautiful skin, with their perfect little lives, and I thought I just didn’t measure up. So what did I do? I hid. I hid from the world.
Through my teenage years, starting at age eleven, I saw hundreds of dermatologists. Some were good, some were bad. One day I went into a doctor’s office, and I was so infected that even from quite a distance you could smell the infection coming from me. I couldn’t even move. My mother actually had to carry me into the doctor’s office because I couldn’t bend my legs or arms. I was in the fetal position because I’d had such a bad flare and I had been scratch- ing all night and my legs were locked. My mother placed me down on a bed, she helped me undress, and she put on me one of those horrible little hospital gowns that I absolutely hated. The doctor came and he stood by the door. He didn’t come into the room, he stood by the door! He had apparently decided that he could do his examination and make his diagnosis from the doorway. That infuriated my mother. She decided she wasn’t going to pay the doctor his $180 fee for that. She said that if he was not going to even touch me in order to determine what type of medication I needed that day, he didn’t deserve her money. So she told me to put on my clothes and we left. She had the strength and the courage to walk out that day, whereas I didn’t, because I was tired and I was in pain. All I wanted was somebody to take the pain away.
There have been times in my life that I wanted to leave this earth because the pain was too intense. At times I would lie down at night and I would beg God to keep me from waking up. My mother would get mad at me and she would say, “Are you kidding me? You have a purpose on this earth. Don’t you ever ask God to take you out of this world!” “All right,” I’d say, “but you just don’t understand. The pain is so in- tense that I can’t tolerate it.” She would say, “You can tolerate any pain that God puts on you because, for one thing, you’re my child and my children are strong. So you have to keep fighting. Keep fighting because there is a reason that you were born with eczema. You have a story to tell.”
I couldn’t express what I was feeling because I was angry. I got mad all the time and I went into my little shell. I used to love the cartoon Wonder Woman because she would fly around in her little invisible airplane and nobody could see her. I didn’t have an invisible airplane, but in my mind I built an invisible house—a glass house—so that nobody could see me. And I lived in- side of that house for many years. I wanted to hide from the world so that no one could see who I was. I didn’t want them to see the ugly skin and the scales and the scabs. I didn’t want them to see the pain in my face every time I felt less than human, every time I felt like I didn’t measure up.
My glass house was built when I was eleven years old—after an experiment went terribly wrong. A dermatologist told my mother to use a cream that is now marketed as a product to remove wrinkles. She was to apply it over the 90 percent of my body that was affected by eczema, and then she was to wrap me in Saran Wrap and leave me wrapped for an hour to burn off the epidermis of my skin, which was supposedly where the eczema was. So, my mom decided to follow this advice and wrap me up. I was so excited. I thought I would be healed! “Finally,” I thought, “I’m going to get rid of eczema!” My mom was more wary. She was not at all sure that she should wrap up her little baby like a mummy in Saran Wrap. But I begged for the experiment to happen. I said, “Mother, I am go- ing to be cured. You said, ‘Always pray for what you want because through prayer your prayers can be answered.’” I started throw- ing her words back at her. I was using that psychology.
So, against her better judgment, my mother wrapped me up, and then I sat there for almost an hour not telling her that I was burning up and blistering. I was on fire, but I didn’t say anything because I was so hopeful that the treatment was working.
This went on for about 45 minutes. Then my oldest sister came home, and she said, “You’re generating heat, something’s wrong.” I was like a furnace. She started cutting me out of the Saran Wrap, and my mother was freaking out. They threw me in a cold tub of water but it was too late. For the next week I still didn’t tell my mother how bad the burns were. I went to school, I followed my daily routine, and again I hid. And every day things were getting worse and worse and worse. My clothes were sticking to me and I was literally peeling them off—along with my skin. On the last day of final examinations, I couldn’t take it anymore. I had a 104 degree fever, I couldn’t walk, and I finally told my moth- er. She rushed me to the hospital and the doctors immediately put me in quarantine because I was so infected. I was a biohazard to not only myself but also to them. The doctors immediately started applying cold compresses and dunking me in ice water baths, and I thought I was going to die from that. It was the worst pain I’d ever experienced in my life apart from the time spent wrapped in Saran Wrap. Two weeks later my fevers finally broke. I was released from the hospital. The sores dried up, and as the scabs came off so did my skin pig- mentation.
Now I’ve told you a few of the experiences I’ve had and the lessons learned from my eczema. Most recently I’ve learned that we don’t live in a vacuum. I learned that last year at my first NEA conference. NEA pro- vides a support system that I always wanted but never knew existed. That’s why I was so excited when I finally found NEA—be- cause I’ve always wanted an additional family. Now I say that my life began last year at the NEA Conference. I’m 37 years old, but I first started to live last year. For the previous 36 years I wasn’t living; I was hiding and dealing with depression.
I have to say, though, that my mother was always my number one cheerleader, she was my Rock of Gibraltar. There is a strength that lies in all of us that we don’t know we have until somebody draws it out of us. It is a strength that lies dormant until somebody challenges us—and then bam, its there. It is forced out of us, and then we realize that we had it all along and we just didn’t know it. For 27 years my mother was that strength; she was the one holding me up, the one encouraging me to live, to keep living and to always embrace the eczema that is my life but should not control my life.
Last June I stopped allowing eczema to control my life. I recognize that eczema may be a part of my life, but it is not Danielle. That is a celebration that I have embraced over this last year.
It’s ironic, because my mother held my feet to the fire for 27 years of my life. At my worst times and at my best times, she was my motivator, and I thank God for her, for the 27 years that I had her.
On her 50th birthday my family threw a huge celebration. Fifty is a pivotal point in life and we all wanted to celebrate her big 5-0. So, on August 1, 1997, we did.
We had a big powwow. Unfortunately, 12 days later I watched as pallbearers lowered her casket into the ground. She died unexpectedly. And, initially, I was very angry. I didn’t understand why God would take her away from me. I needed her. I even wrote a letter to God, and I’d like to share a part of that letter with you today:
God, why did you take her away? My mother knew every time she told me, “Danielle, there is a reason God gave you eczema. There is a reason you’re suffering and in pain.” My mother knew. Every time my skin was so dry I had to scratch so bad in my sleep that I cut the back of my legs to shreds. My mother knew. Mother knew as she helped me straighten my legs so I could walk. Mother knew. Mother knew as she helped me change the bandages on my psoriasis-infected feet that the day would come when I would tell my story to encourage someone else to hold on, hold out! I would tell the story that the pain would not always last. Mother knew. My mother knew because when I was seven years old she encouraged me to write, write when I could not express the pain that I was feeling in words to her or my sisters. I couldn’t vocalize how I was feeling. “Write it down, baby,” she would say as she handed me yet another journal. “Write what you can’t express.” My mother knew. So God, why did you take her away?
He knew. Just as she knew what was inside of me. Magnify that by 10 trillion times. God knows, and He knew what was inside of me. Today I dedicate this speech and my life, my rebirth, to my mother because she would not allow me to give up on myself.
So, today I can smile. This smile has been a work in progress for 37 years. To- day “the me that used to be” can stand before you. This has been an extreme work in progress. I stand before you today exposing what I have come to call my reverse freckles. No one in this world has these beautiful reverse freckles. They resulted when an experiment went wrong an experiment suggested by a doctor who thought he was going to help my eczema but who sent me into a depressive state for over 30 years of my life 30.
I can now say I’m no longer that person who used to be. I am no longer ashamed of Danielle Alexander. I am proud of me and everything that I have been through in this life. I am an eczema sufferer who has overcome anger, resentment, depression and every trial and tribulation you can possibly imagine to stand before you today and say the me that used to be no longer exists. I know deep within my heart and my soul that there is no one else like me in this world. There’s only one Danielle and that person is always going to be proud of who she is. I am proud of what God made me and what God gave me and that was eczema, atopic dermatitis, in all its glory, in all its horror.
Because of eczema, I am the person who stands before you today. Without eczema I would never have turned out the way that I have.
My challenge to each of you today is to celebrate the uniqueness that is you—be- cause we all have unique characteristics. I now celebrate my reverse freckles, and God knows I couldn’t have said that even last year because I was still struggling with them. The day I came to my first NEA conference I was struggling with many things. I almost didn’t even come to the conference because I was having a bad day. Thank God I came. Thank God I found another family one who embraces me for who I am. I love all of you.
Embrace your uniqueness. Whatever you are, whoever you are, embrace that.
Today I can shout from the rooftop I am no longer “the me that used to be.”
Thank you all.