https://yourautoimmunityisgorgoeous.blogspot.com/2017/05/the-beginn...

The Beginning


My name is Shannon and I am a thirty-three year old woman who has been struggling with Alopecia Areata Universalis (AU) which is a complete loss of hair on my scalp, face and body. It is an autoimmune disease that affects as many as 6.8 million people in the U. S. with a lifetime risk of 21%.
When I was only seven years old, my mother was brushing my long, dirty blond, wavy hair only to find quarter sized bald spots throughout my scalp. Over the next year many tears were shed between myself and my parents as my hair rapidly fell out. Months of painful steroid injections, experimental shots to the scalp and attempts with topical creams applied only to find myself completely hairless at the tender age of eight. To say children can be cruel would be an understatement and daily questions of “why me?”, “am I being punished?”, and “what’s wrong with me?” began. During this time I wore baseball hats with hairpieces, caps, and knitted berets to hide the shame of my hair loss. I can vividly remember a boy on the playground calling me hurtful, painful names with me running home in tears to my father. Being the protective, loving, and prideful man he was, my father had no issues letting that boy’s father know he was never to talk or even to look at me again.
          My school also had rules against wearing hats in school to which my father responded by telling them, no asking, that I would be the exception and wear by pony tail attached baseball cap as I pleased. My father is and always has been my knight.
          We moved to Tennessee before my 9thbirthday. My parents and I decided it was time to invest in my first wig. We also found a dermatologist who was renowned for his leading research in treatment for Alopecia.
          I started 5th grade in a small hometown city. It wasn’t easy being the new girl let alone the girl with no hair or the girl who wore a wig. When children don’t understand something or are afraid of the unknown, they can react in hurtful ways. I was constantly bullied, called names, and even once had my wig pulled off while standing in line in the cafeteria waiting to get my lunch. I was no stranger to a pillow soaked in tears.
          Amidst all the heartache I was enduring, we had met Dr. Rosenberg, the Memphis dermatologist who had recently returned from a conference discussing a new experimental treatment to re-grow hair. And so we began process. Along with this new treatment, Dr. Rosenberg had an intern whose mother lived in California and performed permanent facial make-up. On her own dime she flew to Memphis and tattooed permanent eyebrows and eyeliner on me for free. Although painful, this helped my self-esteem excrementally. I only wish I could remember her name so I could thank her once again for her altruism and compassion.
          Within a year of using the treatment, my hair had grown completely back. However, it was no longer thick, blond, and wavy but now black, thin, and straight. Although disappointed, I spent the next several years celebrating coloring and perming my new hair. I still endured the name calling and isolation especially when hair was thinning or when my forehead began to “expand” due to hair loss. I had extreme self-imagine issues and was constantly seeking approval from others.
          I was finally asked out by my 11th grade year by a boy that worked with me in the local grocery store. He attended another high school but we spent every moment we could together. For a teenage boy, he proved to be an amazing person and a loving support for me. Things were not always great but they weren’t all bad either.
          As I started my senior year of high-school, my world as I saw it, started to fall apart and at a rapid pace. The medication was not working anymore and my hair began to fall out yet again.
I was devastated.       
I had a secret goal or rather wish for myself to get through the year as discreetly as possible, that maybe no one would notice my thinning hair. Prom night and graduation I wore several dozen extensions in my hair but I made it through feeling somewhat normal and beautiful.
          The summer after high-school we bought my first realistic, molded just for my head, cranial prosthetic hair piece aka fancy wig. I felt like a normal girl for the first time since I was 7 years old. It may have been extremely hot but I didn’t care. I felt pretty. Boys noticed me. I noticed them too. I started acting out, seeking affection and validationwhenever and with whoever I could. I felt wanted in the moment but shame, self-hate, and worthlessness after.
And then I found myself pregnant at 21.
I wish I could say having my son changed my distorted thought process of self-imagine but it didn’t. I did however get serious about school and graduated with a bachelors and then a masters. Yet I still continued with those self-destructive thoughts and behaviors.
          Fast forward several years and I found myself divorced, a single mom to two little boys, a good job, a roof over our heads and car to take us from A to B. I still lacked in the ability to love myself for who I was inside and out. No matter how many men I had been with or how many relationships I had had, when I saw myself in the mirror without my hair, all I could see was a terrifying reflection looking back at me that could barely maintain eye contact.
Depression and anxiety took over by life. I drank wine to numb the pain. I started missing more work. I stopped caring about my self-care or even caring for my boys the way they deserved to be cared for. I used and manipulated people as well as lied and avoided them. I isolated and often sought inappropriate attention.
I had hit rock bottom.
Now I bring you to my present day. I am currently finishing up my third week in residential treatment and learning how to accept and love myself just as I am. I see a therapist 3 to 4 times a week and I have been working on the trauma in my past that I believed had defined me in my present. I am learning appropriate coping skills and how to use mindfulness. It has not been an easy few weeks and I miss my boys, my home, my bed, my life. I know that using this time to focus on me will only provide the two most important people in my life with the best future and a mother they deserve. I have started to see a new version emerge of myself that I never thought existed. Now I have given myself a challenge, an ultimate challenge. I will accept and love myself just as I am.  After reaching out to the Memphis photography community, I found numerous photographers excited to offer their services to help empower me in this journey. I was overwhelmed reading their many responses. I know any of these photographers would be amazing but I finally decided to go with SaraAnnGreen.com. She has willingly accepted the task of capturing my most vulnerable moments of empowerment as I enter into the public streets of downtown Memphis and remove my hair. Only few close family and friends have ever seen me without my hair only wearing a bandana yet alone had I ever stepped foot outside for the public to see me without my hair.  My goal… to be okay with just being me. Bald, beautiful and powerful. For me to not just think or know but rather believe that I am uniquely beautiful and worthy.
I know so many emotions will arise with this adventure that will include fear, rejection, anxiety, relief, love and excitement. Honestly, I hope each moment is captured in its own perfection. With the support of friends, family and my Treatment Center, I plan to own this challenge. I want to continue to journal through this experience of hopefulness and discovery of true self-love. I want to share not only my story but show it in pictures as well. I want to share it with you and with the world. Who knows…maybe even help someone else who has experienced the same kind of pain and heartache that creates that shame and helplessness so that they too may find hope and empowerment.
I’m doing this for me.
#YourAutoimmunityIsGorgeous
Hashtag credit: Justine Durden
Until the next time,
Shannon

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