When I was in my twenties I learned that hair could be donated to make wigs for children with alopecia. I didn’t know anything about the disease but it seemed like an easy enough thing to do, so I did it multiple times. If I had bothered to learn about alopecia I might have understood that a wig was not the easy bandaid I thought was. Erin taught me about the challenges and complexity of living without hair and the impacts we couldn’t even imagine:
It’s so crazy, life that is… it’s just simply unequivocally crazy at times. My “crazy” was waking up at 10 years old and realizing that overnight most of my gorgeous, thick, dark brown locks were no longer on my head but rather in clumps all over my pillowcase. I know, I know… how could that happen? I told you, it’s crazy and boy was I on the start of one bumpy ride!
Putting the shock of what was happening and the ultimate despair I was feeling aside, I was immediately forced into a world of doctor’s appointments, psychologists, and being introduced to a whole variety of treatments to get the hair that had fallen out all over my pillow, back on my head where it belonged.
Cortisone injections, extensive allergy testing, ultrared light therapy, poison ivy treatments, finding a forever home for our beloved family dog, a new roof on the house… you name it and my parents tried it! Each time with me in tow, praying the solution would transport me back to the happy-go-lucky childhood innocence I had lived in. I wanted my hair back… this was not simply fair.
Unfortunately, I would not be transported back, I was thrust forward into a world in which I had been diagnosed with an autoimmune disease called Alopecia Universalis. A disease with no known cause and no known cure, a world of complete hair loss on my head and body. My immune system had started to completely reject and attack my hair follicles leaving me completely bald and I soon found out that this new world was not ready to embrace a bald little girl, so it became a journey on figuring out how to “Hide” this secret in order to fit in.
It was day to day at first and the fear of being found out and the teasing that came with it when kids did find out was earth-shattering. We researched wigs and found some great ones that did help me fit in, but I was filled with self-doubt, insecurities and overall, just really feeling defeated. Every birthday, every water fountain, every wish was a wish which would grant me the ability to regrow my hair!
Over time and over the years (many, many years) my wishes dried up and I began to change my wish, I wished for love, for a successful career, for all sorts of things. My focus had to shift because, let’s face it, my head was as bald as it had been when my journey first started. I slowly accepted that I was who I was, I cannot change it, so might as well embrace it!
I am ultimately so blessed. I found a career that I enjoy and recently celebrated my 20-year work anniversary! I am blessed with my cozy coastal home, my supportive and loving parents and stepparents, my amazing sisters and an absolutely incredible group of friends.
I found love and lost love but now that’s all behind me. Now, I am in a great loving relationship with my boyfriend, and he always has me cracking up and smiling. Best of all, I became a mom to my two incredible fur babies, Lady & Gizmo. They have truly taught me the meaning of unconditional love which is why this portrait would not be complete without them.
I began (very, very slowing) to make a conservative effort to take my wig off. I would be bald around those closest to me, then a few years later I would try a trip to the pharmacy and then a couple years later, I would try a lunch or dinner out as a bald woman and then eventually I found bandanas and hats that I wore.
Sure, people stare, I get asked all the time how I am doing and if my treatment is going well. I used to just nod my head or look the other way, but now I am actively trying to not do this and instead trying to educate people to generate awareness whenever I can!
When I walked past this exhibit and looked into the eyes of the people whose portraits I was viewing and then read their incredible essays, I thought to myself, Boy I hope someday I am strong enough to share my story, I hope I can someday stop hiding behind my hats and bandanas and maybe just go out completely bald, and just be completely and utterly “ME”. At that time, I did reach out to Amy Kerr and got some more information about the exhibit and then I sat on that information for a couple years. When it was time, I would know!
Fast forward and we were all forced into a new world. The word of COVID! The world changed so dramatically and during the time of isolation at home and being away from loved ones and family, I began to realize just how short our lives are and that honestly there is no time like the present, so when Amy and I reconnected this past Fall, I knew I was ready!
I am ready to shout out that “I AM MORE” I am more than a woman with no hair. I am me; I am Erin, and I am going to be just fine! I am bald and people can accept that, or they don’t have to, but I am no longer going to let it paralyze me or stand in my way.
I will always remember the first time I heard the saying in one of my Alopecia support group meetings, “God Made a Few Perfect Heads, the Rest Have Hair”! I hoped I would someday turn that saying into my reality and I have. I have a Perfect Head; I am just the way I was meant to be. I have turned the page and from here on out when I look back it will be with the knowledge that I am happy on the journey that I get to call uniquely mine! I am More and I will, have and will continue to do the Bald Boogie with the best of them!!!!!
I Am More is supported by donations. To make a tax-deductible donation towards framing and transport of exhibits please go to fiscal sponsor Ocean Alliance’s donation page and choose “I Am More” from the list of programs. Thank you for your support!!