I recently learned that September is alopecia areata awareness month. If I can make any contribution to the awareness of the disorder and its impact, I want to do so- regardless of how small it might be. I don’t often get to share my journey with alopecia- a journey that has not been easy. But 10 years into this diagnosis, I am only just beginning to understand how alopecia has prompted a major revision of my own thinking patterns and ideas of self-worth. I have this teeny tiny hope that my teeny tiny blog from my teeny tiny piece of the internet might inspire a teeny tiny bit of encouragement in you. So here goes…
Just shy of 10 years ago. I was lounging around one night when I noticed my husband squinting and peering intently at my head. “What are you looking at?” I asked. He paused, wanting to be sure of what he saw before speculating any further. “Is that a bald spot?” he asked.
I bolted to the bathroom, hurriedly searching for my handheld mirrors so I could position them perfectly to examine every inch of my head. It was not a bald spot that he saw, it was several. I’m not sure what word would best describe what happened next. A breakdown. A meltdown. A panic attack. Whatever it was left me crying in a fetal position, rocking back and forth and sobbing profusely.
Only a few months before, I had become aware of an autoimmune disorder called alopecia. I’m not sure how it came to my attention but I very vividly remember opening google and typing “that disease that makes your hair fall out.” It seemed like a pretty awful disorder and when I read that most cases develop during childhood, a wave of relief washed over me. “Phew, that’s good...I’m in the clear!” Fast-forward and here I am, fearful that I have it and blubbering mess. It was a Sunday evening and all the urgent care facilities had long since closed. We were living mere minutes from an emergency room and I seriously contemplated speeding my way there until I remembered that MY criteria of an emergency would not necessarily be given the same weight by the triage nurse.
By the next day, a doctor was able to confirm the diagnosis of alopecia areata and began what is now a frequent process of injecting my scalp with steroids. Alopecia is an unpredictable disorder which, on the surface, does nothing more than cause hair loss. The psychological impact, however, can be intense. Many people with alopecia experience regrowth and it never returns. For others, the condition worsens and they lose all their hair. For anyone with the diagnosis, the disorder can rapidly take either course without warning. This, among other things, is one of the more frustrating aspects of alopecia. Not knowing whether I should prepare for the worst or dare to hope that I might actually be healed from this someday.
The days that followed my diagnosis were fraught with depression as my hair loss progressed. I was smackdab in the middle of what should have been the best years of my life: new husband, new career, and a freshly achieved master’s degree hanging on the wall. Yet, I found myself struggling to find hope that I could have a normal life. Which was really all I wanted- a normal life. I wasn’t asking for Kate Middleton hair- just a life wherein I could peruse the aisles of Target without any stares. But at the time that seemed desperately out of reach.
Over the years, my scalp has been in various stages of waxing and waning. While I have sometimes struggled to process through my own feelings, I also had to deal with well-intentioned but unhelpful comments by others.
“At least you have your health!” Really? My body is attacking itself and I cry myself to sleep every night. This doesn't seem healthy to me. (Also, attempts to bring comfort with a sentence that starts with “at least” often miss the mark and comes across as minimizing. (Meta-parenthetical Note: If you have ever tried taking the “at least” route when offering comfort, I’m not here to judge. I’ve made similar mistakes too. But when we know better, let's do better.))
“Thank God it’s not cancer!” I cannot emphasize to you enough how grateful and blessed I feel that my hair loss is from alopecia and not the result of cancer treatments. But comparison strategies don’t often bode well either. You know why? There is enough pain to go around! Allowing me space to work through my pain does nothing to hinder or heal the cancer patient, who undoubtedly has her own pain to work through.
“At least you have a beautiful wig!” I’m not going to lie...I did have a beautiful wig. There were certainly some pros to wearing the wig, mainly that I only had to wash it twice a month. Wigs are immune to bad hair days-humidity was a problem of the past! The downside? They itch like heck! I had to wake up every morning and try and determine the original size of my forehead for optimal hairline placement. Also, I basically had one option for style which, admittedly might render the aforementioned Kate Middleton “totes jelly” but might not have been appropriate for say, my son’s t-ball game. Speaking of little league, wigs are hot. As if that were not already hot enough, I had to wear a second layer of head in the muggy Louisiana heat while watching my three-year-old run in circles in the outfield. Lastly, wigs are at constant risk of falling off, as was the case at my cousin’s wedding when my son decided to tug on mama’s hair. Yikes! I eventually determined that I can save the wig for special occasions such as job interviews and formal weddings (at which children were uninvited). I instead opted for fanciful scarves and practical hats.
One day, during one of my most severe episodes to date, I had grown tired of all of the frustrations that came with alopecia. I was tired of wigs, scarves and hats. But mostly I was tired of alopecia getting to call all the shots. Without consulting anyone or even without a second thought, I marched into the bathroom, grabbed a pair of scissors, gathered what remained of my sparse hair and cut through all that I could. A thin ponytail remained in my hand and a woman in charge stood in the mirror. I liked that feeling and I wanted to chase that feeling.
Not long after, surrounded by family, I took the plunge and decided to shave my head. The very thing that I feared- a totally bald head- was now a product of my own doing on my own terms. For reasons I am not entirely sure of, this experience was exactly what I needed for healing. I was able to experience an entirely new freedom.
Suffice it to say, I’ve experienced a wide range of emotions with alopecia over the years. I have felt intense sadness followed by relief when new hair sprouts. I have felt disgust when stray hairs seem to be everywhere: on my pillow, in my cereal bowl, tangled in my vacuum cleaner, or clogging up the drain. Even the relief that comes with a retreating bald spot is followed by frustration when new sprigs of hair stick directly out of my head like the quills of a porcupine. Also frustrating: learning to draw on eyebrows, keeping debris clear of my eyes without the benefits of lashes and the elaborate game of hide and seek my hairdresser and I play with my bald spots.
But, after having lived with this diagnosis for 10 years, I find myself a changed woman. I’m not happy that I have alopecia. I doubt I ever will be. Yet, through the process of “doing my own work,” I have been able to gain some new perspective, for which I am eternally grateful. Self-worth and self-image can be so fragile. Especially when ever-changing standards are placed on an ever-changing body. My appearance can change on a daily basis. This seems particularly true for someone with alopecia, right? But the fact is, this is true for all of us. Scars. Stretch marks. Gray hairs. Lines on our face. A few extra pounds. All seem to magically appear out of thin air.
Thankfully, our value doesn’t change even when our looks do. One of the great lyricists of our time, Randy Travis, lends us such profound wisdom in this verse:
They say time takes its toll on the body
Makes the young girl’s brown hair turn gray
But honey I don’t care
I ain’t in love with your hair
And if it all fell out, I’d love you anyway
Perhaps this sentiment is more aptly expressed by Jesus in Luke 12:7: Indeed, the very hairs of your head are all numbered. Don’t be afraid; you are worth more than many sparrows. You know what is really lovely about this verse? There are no conditions! Our value and worth don’t depend upon the number of hairs on our head. Just by virtue of being a child a God, we have value and worth. We reflect this aspect of God when we love our children regardless of the grades on their report cards. Or cuddle with our pets after they have managed to destroy our most precious belongings. Or extend grace to a friend when they have forgotten our birthday.
Yet, the compassion that we readily extend to others can be immensely difficult to extend to ourselves. We hurl insults at ourselves that we would dare not speak to others. We diminish our own sense of worth though we would never do that to a loved one. We see the beauty in others but outright deny its existence in ourselves. Perhaps it’s time we turn the tables on self-worth and change our inner dialogue. Perhaps today is the day when we shift the sands of our thinking patterns and begin to acknowledge our worth regardless of our actions and appearances. Admittedly, this is not easy. Initially, it might even be a minute-by-minute, day-by-day choice- to love and accept ourselves as we are. But I am living proof that these thinking patterns can change. Today-and every day- it is my sincere hope that you and I both can consciously and intentionally choose to extend acceptance to ourselves. That, regardless of what the mirror looks like today, we can choose to look for the worth, the beauty and the love…forever and ever, Amen.
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