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 9th birthday. 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 validation
whenever 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
