Even without Hair: Finding Myself by Letting Go in my War with Alopecia

As social creatures, we humans have an innate sense and desire to belong somewhere and to surround ourselves with others with whom we can relate. As a child I felt as though I was far too different on the outside to fit in with everyone else. On the inside, I wanted to feel like all the other kids around me: happy, free, and invincible. That’s how I saw them anyway. Looking back on that time of my life, I realize that many of my childhood friends and classmates had plenty of their own issues, but it was never apparent to me that they had anything to worry about. It is amazing how naturally self-involved we become when we are young, unintentionally disregarding the problems of others around us and what they may be dealing with in their own lives. My own problems were deeply rooted in something so fine, so fragile, yet resilient enough to crack my very being.

I grew up in the eighties when hair styling was all about volume, frizz, perms, and excess of well, everything. Everything about that time seemed to have been created with one ideal in mind—the bigger and more colorful the better. I look back and consider myself fortunate to have lived my childhood in a time when the more individually and extravagantly you styled yourself, the more fashionable you were. During this time, I felt as if I had a bit more freedom to be different than children do today. Still, no matter how seemingly free we were to express ourselves with our hair then, an excessive degree of perfection in the artfully crafted coifs could be found on the crowns of the eighties children. Toy-maker Mattel brought to us the Lil’ Miss line, Barbie started an all-girl rock band complete with enormous rocker hair, and My Little Pony dolls were so elegantly coordinated with their own flowing manes complete with matching brushes and ribbons. I had my own collection of Barbies but my time spent with them was short-lived. They all came fresh out of the box with the trademark long, shiny blond hair, yet I was more interested in creating magnificent wardrobes for them and making sure the horses were fed and watered. With my younger brother and the neighbor boys I played GI Joe, He-Man with the oozing Castle Greyskull, and shot BB guns in the woods where we built forts and treehouses. I was more interested in creating and living in my own fantasy world than living in the Barbie Dream House. Everything for me seemed to always manifest and exist one end of the scale of extremes—at one end pure fantasy and at the other blatant reality. The fantasy was that I could be me inside and out without ridicule or judgment. The reality was that my hair was an issue for everyone else, and an enormous one for a small child and her tireless mother. I felt like everyone around me wanted to find a cure and fix the way I looked, but I remember just wanting to feel accepted for the way I appeared naturally.

My struggles with hair began in 1978 at the early age of eighteen months when I was diagnosed with alopecia, which back then was considered a rare disease. For years, the nature of this disease was a mystery, and in 1994, a study confirmed that alopecia is in fact an autoimmune dysfunction as normal human antibodies significantly alter hair follicle development (Tobin 723–24). After I was born, my hair growth appeared to be normal and was considered so until my body began to develop a more regular hair cycle and began to display thinning and balding areas. It’s possible that I was born with congenital alopecia, which is difficult to diagnose in newborns and infants because in many cases the child’s hair is not fully developed. Some exit the womb with a full head of hair that is thin or very light in color, while others are born with...