Life is too short for white walls and self-hatred

The life expectancy for an American female born in 1970 is 74.7 years. My weird health history makes me think that I could be looking at a lower figure. I definitely need to live long enough to see if my husband finally figures out how to put the frying pans away properly. (He puts the largest one on top, which results in me shrieking, "They're meant to NEST, for fuck's sake!") I also need to make sure my baby girl pursues her dreams relentlessly - she might need me on hand to swat away any doubters. 

Thinking about my own mortality lately has led to a couple of minor revelations. The first involves our home. The three of us (plus two dogs, one cat, and one gecko) live in a fairly standard three-bedroom ranch-style house. We could have moved to something bigger years ago, but we opted not to do so. We moved several times in our younger years (including a cross-country move) and we were pretty much over the joys of moving by the time we bought our home. We've raised our child here (and various furry friends and foster animals). We have lots of equity in our home and expect to have it paid off in a handful of years. Plus, who has the energy to update their driver's license with the correct address after they move? I'd give up a finger for walk-in closets but that's really my only regret.

I've always heard that it's a bad idea to paint a small room in a dark color because it makes the room appear smaller than it really is. Thus, I've spent the past 24 years with white and off-white walls. Last fall, I swore off white walls and painted the dining room red. I love the way it turned out. It features a tin ceiling tile salvaged from an old building in Chicago. I added some touches like an elephant figurine that I found in an antique shop. I hung a brass Hamsa hand over the entrance to the living room. When hung with the hand facing upward, it represents protection. When hung upside down, the Hamsa can symbolize fertility.  Because I have a teenager in my home, I made sure the hand was fully upright and that it did not dip down even for a moment. 

More recently, I painted my rock-n-roll-themed bathroom grey. Additionally, I had some new artwork I wanted to display and decided to paint the small hallways at each end of the house. After gazing at taped-to-the-wall Dutch Boy paint samples for a couple of weeks, I opted for a beautiful (but rather aggressive) shade of blue not commonly seen in residential interiors. To make sure the hallway doesn't feel too cave-like, I purchased this art display light. 

Just to prove I haven't gone off the rails, I am allowing the kitchen and bedrooms to retain their subdued color schemes. The living room is a caramel color that can stay for now. I am eyeing our second bathroom for a teal/peacock-type color but that's a project for next spring. 

The second revelation floated to the surface after Will Smith smacked Chris Rock in the face on live television at the Academy Awards. That event is a bit too recent for me to have digested it fully, so I won't add a lot of commentary here. It strikes me (no pun intended) as something that a non-wealthy, non-celebrity type of person wouldn't have gotten away with, but what do I know? The mister and I just watched King Richard on Saturday night and loved it. I guess I probably did have a bit less respect for Will Smith after the Oscars than before, but again, I'm still pondering the whole thing. It would have fallen off my radar rather quickly if not for one facet of this story: alopecia. 

I have battled alopecia (and vitiligo) all my life. I learned to deal with the vitiligo in time, but the alopecia has always been a more soul-wounding condition. I imagine it always will be. This blog post is not about how I overcame that pain or how I don't care who stares at me. At 52, I care a whole lot less about what people think than I did at, say, 22, but I will never be comfortable with stares. What I did overcome, however, was my steadfast refusal to talk about it. I wrote a blog post about losing almost all of my hair in 2020; it was nothing if not cathartic. I wore a wig from the summer of 2020 until the spring of 2021, when my dermatologist's interventions resulted in a "socially-acceptable" amount of hair. After eight months of being wig-free, my condition took a turn starting around Christmastime. While stress/anxiety seems to make the condition worse, it's always hard to point to any sort of trigger. It's just my immune system going rogue. 

Last Sunday, I chatted with my friend Amy after church. "How are you doing?" she asked. 

I gingerly patted my hair, which was carefully wrapped in a scarf. "I'm losing my hair again," I said matter-of-factly. It's an upsetting topic for me, still, but Amy is a safe place - as are so many of my friends and family members. By the way, if you ever run into anyone with my particular constellation of medical issues and they confide in you, your best bet is just to say "that sucks, I'm sorry" and not try to offer a cure.

As a child, my peers made sure I knew that my appearance was profoundly unacceptable. It took a long time to get some distance from that. The wig I wore last year forced me to acknowledge what I had worked so hard to hide all my life (after all, it's not like anyone would have believed that my fine hair transformed into luxuriously thick locks out of the blue). My friend Natalie introduced me to the phrase "you can do this hard thing." And indeed I could. 

I'm hoping the current recurrence won't be as severe as the 2020 episode, but I'll roll with the punches either way. Because I have to. 

Jada Pinkett Smith's celebrity, I imagine, has not shielded her from the sting of having this frustrating condition. As women, we are raised with the understanding that hair is IMPORTANT, that it's a primary ingredient in our very beauty. For a Black woman, I am sure there are many other factors in that relationship that I shouldn't really guess at. But still, I understand what it's like to have alopecia and to wake up every day knowing that it's fully out of my control. Jada Pinkett Smith and millions of other people know it all too well. 

The incident at the Oscars highlighted one thing for sure: alopecia is a traumatizing condition - so much so that her husband couldn't let Chris Rock's joke go, I suppose. Perhaps it's not the ideal situation in which to highlight auto-immune conditions like alopecia, but the increased awareness likely does help. I guess the Smiths took one for the team? It was an odd situation - I have no more clarity now than I did a few paragraphs ago. 

Alopecia, it seems, is having a moment. Vitiligo has been on a similar trajectory. In recent years, I've been amazed to watch people like Winnie Harlow rise to prominence. What? Beauty and vitiligo aren't mutually exclusive like the world told me 40 years ago? I even saw a display ad at Kohl's recently that featured someone with vitiligo. There are many people like me who have multiple auto-immune conditions. And believe me, all of us who suffer from them are well aware that it "could be worse." We know. 

I would still love to have a longer period of respite between flare-ups with my hair. I want to worry less about windy days and swimming in public pools. I'm not ready to be carefree about the whole thing, but I'm ready not to hide my pain. 

Oh . . . I asked my husband if he would smack someone who made fun of my condition and he was fairly non-committal. Whatcha gonna do, amiright? 



Here are a few photos of my recent painting frenzy:










Comments

Jen said…
My husband has vitiligo, my good friend has alopecia. I still think it's much, much different for a woman. My heart goes out to you. I love your paint colors, art selections, and I especially admire the DM Personal Jesus. Hope you and family are well.

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