The most recent installment of my story concluded about a year before this blog began. You can read many of my more recent stories and reflections on this site, but as the past few years have involved significant change, they seem worthy of a more consolidated update. So, let’s call this installment “embracing freedom” and we can talk all things hair, wigs, relationships, and growth.
Hair. Surprise: it’s gone! (I’m aware that my picture is on my homepage, so…). The truth is, I’m relieved about this. Over the past few years I fought the good fight to grow it back, and for a time some did grow, but never a full head of hair. I was fully charmed by seeing dark hair again, although a little less charmed to find some random grey hairs popping up here and there. How dare they.
The steroid shots which had helped reinitiate growth just weren’t enough to keep it there, so it became a renewed game of whack-a-mole. Eventually it became clear that the shots alone weren’t going to cut it, and new medication possibilities became available. They were extremely promising for regrowth and I was so excited, working with my doctor’s office and insurance to get my hands on some. Then reality came knocking… these medications would interact negatively with another medicine I take and are not really an option for me. Ugh. The loss of possibility cued its own grieving process, but it didn't last for too long. I called it quits on the shots and my hair quietly evaporated again. Over these years, my Alopecia Areata became Alopecia Universalis.
So why do I feel good, when I would dearly love to have hair again? Because at the moment I’m not engaged in an exhausting, often losing battle. My bald head is soft and smooth. I’ve decided that “All or Nothing” beats “All or Something” for me right now, and to tell the truth, acceptance feels suspiciously like relief. I’m just going to rock the bald for a while. Does this mean I’ll never try again if new treatments come out? Probably not. But for now, I choose to let it be. I choose to be happy.
Wigs. I continue to wear them all the time, but this year I bought two new wigs that I’m in love with. First, Encelia. She’s a sports and fitness wig designed by a fellow alopecian, and has brought me so much joy this year. Because of the headband that fully encircles my head, I am able for the first time in years to put my hair up in ponytails, buns, and braids. I love having my hair off my neck! It’s also made it so much easier and more comfortable to wear helmets for mountain biking, ropes courses, skiing and other activities. This product makes me SO HAPPY, and I have major respect, appreciation, and admiration for this company's founder.
I also decided to live a little and bought some blonde hair, just for fun. I love her differently than Encelia, but all my girls are special!
Over the past few years I have become bolder about choosing softy hats over wigs with window blinds open and occasionally spending time on my porch or in my yard that way. I have also taken major strides in wearing swim caps to the neighborhood pool and changing in and out of swim caps and softy hats on the beach. Last summer my husband and I went for a walk on the beach and when it became too hot, I simply removed my hat and walked on bare-headed. It was breezy, lovely, and so freeing.
Relationships. When we moved to our current home, I was still on a bit of a high from having begun sharing my alopecia more openly in our previous state and did tell one or two new friends about it pretty quickly. The pull of secrecy and normalcy was so strong though, and for the most part I went back into hiding until telling some other friends a year or so later sparked this season of blogging, sharing, and intentionally processing my experience. Over the past few years and through this intensive process of purposefully engaging with my reality I have become bolder in talking about alopecia with others, focusing less on their opinion of me and more on how sharing myself can benefit them or our relationship. It’s a work in progress, but I’m committed to it and feel good about it.
You know from previous installments of my story that alopecia has really impacted how I engage with social media. So much fear and so much hiding. The update there is that the 2022 Oscars incident around Jada Pinkett Smith was a tipping point for me. I posted my thoughts on social, sharing that I had fought with, wept over, struggled to cope and ultimately prayed to accept and just live with this very issue for 23 years. Some friends had known, some had not. Some responded, some did not, but it felt right to me to have shared in that moment. I haven’t really talked about it there since, but I suspect it may be coming.
Meanwhile, just the other day I shared in person about my alopecia with some newer friends – women I really like but am still getting to know. We were talking about autoimmune issues and when I was asked point blank whether I had any, I found it rolled off my tongue to say that I have Alopecia Universalis. We talked briefly about baldness, wigs, and I even shared my blonde photo with them, and the conversation was full of laughter, kindness and honesty. Most amazing to me was that I had only the merest hint of a vulnerability hangover afterward rather than a full blown basket case experience. This is major progress!!!
Growth. In one of my earliest posts, I commented that “I have this image of a day that I will fully embrace alopecia. That it will no longer bother me, that I will fully own it and roll with it, and that this will be my permanent state of being.” I feel like I’m getting there. I’m likely always going to want real, natural hair. But maybe I’m okay without it. And I am daily growing into a person who doesn’t need to hide myself or hide from the reality I’m living in. I know there’s more work to do, but I am going to keep showing up, doing the work, and trusting that this process is leading somewhere I want to go.
As always, I appreciate your presence on this journey more than I can say. You are important, and you are important to me!
Hugs today,
Lindsay
