Post Soundtrack: Beyond This Moment by Patrick O'Hearn
There are many small ways we define ourselves. Even those of us who do not put our self-worth into outward things can be affected by the loss of significant details of our physical appearance. For me, it was, and is, I suppose, my hair. Perhaps it was a touch of vanity, but I tended to think of myself as having long hair. It was no great glory, nothing that anyone else but my husband and perhaps my mother would have admired, but it was mine. It was me.
Lupus changes everything.
Hair loss was one of the very first symptoms I noticed so long ago. When your hair is to your waist, you notice when more of it comes out than is normal, I can tell you for certain. But I came to accept it. For years, the amount of hair I lost in the shower stayed the same. But when things started getting worse, so did the hair loss. I was starting to find it on my pillow when I laid down every night. It accumulated in corners of the bathroom floor.
And then I started taking medicines like prednisone and methotrexate.
Needless to say, it got worse. I could run my fingers through my hair and come away with five or six hairs caught in my open fingers. If I kept finger-combing, I'd get a handful eventually. When I brushed my long, long hair, I would end up with a swoop of hair trailing from my brush. You could now trace my movements by looking for my hair, for it was sure to be anywhere I had gone.
It was all so demeaning. It was undeniably distressing. This part of myself was betraying me, leaving me in the lurch, quite literally. It hurt, like an emotional wound from someone's hurtful words... but there was no one to blame. There was only Lupus to be angry at, and that was rather a fruitless use of emotional energy.
And then I began to notice a thinning patch, right where my long hair parted.
That really was the last straw. Though I defined myself by my long hair, it was time to brave a change. At first, as I considered getting my hair cut, it only added to the sense of shame and dishonor of having to take such drastic measures. But I had the reassurance of being reasonably certain that, when cut short, my very straight hair was going to develop a wave. My mother had cut her hair very short, and found a gentle curl as a result. I had hopes for the same, and such hope (for one who had always wished for wavy hair) was one of the few things that kept me from despair.
It was cut shorter than I'd had it since being a toddler. It ended up at my jawline, but wonderfully layered and, tada, CURLY! Well, softly curly. No real curls, but definite body and ripples. It felt good!
It took some time to stop seeing myself as woman-with-long-hair. It took some time to adjust to feeling it tickle my neck. But I was pleased with it, overall.
What I find most strange about it all, though, is the sense of self-definition. I now prefer to define myself by my perky, curly do, rather than what it looks like when I go one too many months without getting it cut again. I have adjusted my mental image of myself to this new norm. It doesn't prevent the hair from continuing to fall out, of course, but it does hel me feel some better about it. Thinning spots can be covered with the new-found body my shortened hair possesses. I don't heavily brush my hair anymore (ruins the curls), so I don't get swaths of evidence in my brush. I do still find it on my pillow, and all over the bathroom floor, and in the shower drain, and on my clothes... but it is not so impactful now, being shorter and less noticeable.
So my sense of self has been rescued, a demoralizing situation turned around. Part of me wonders what will be next. Currently I am considering getting a handicapped placard for our car. Yup, you bet, that's making me feel very self-conscious and demoralized. However, I am coming to realize that it probably is a good idea, and would help me take better care of myself. One hurdle down, another to conquer.
It's astonishing how illness can force not just your life, but how you think of yourself, inside and out, to change so dramatically. No wonder I've heard so many facing Lupus to feel they are losing themselves to the disease. I'm doing my best to simply go with the flow, and learn new ways to be the new me.