My surgeon shaved a significantly larger portion of my hair this time, than my surgeon shaved of my head last time. Certainly, this is not my call to make; I’m not in charge of how much to shave. Nor, am I in a position to question why such a call was made. However, I am in a position to say that it makes me unhappy. I like having hair. It’s why I chose to have it.
Sick people don’t like complaining. We even get tired of hearing ourselves! Outside of complaining for a purpose, I try not to do it too much. For example, I complain thousands of times a day about how much my head or neck hurts, about the quality of my pain, the type of it, and the location; however, I do this to help log my pain for the specific purpose of medication management.
But, when I complain about something else, something specific like my hair being shaved, it’s probably because I’m pretty upset about it. My doctor was pretty bummed when I complained to him about how much hair he’d shaved. See, we’d had a little heart-to-heart about how much he was planning to shave. I thought we were on the same page. I know I’m not supposed to care as much about my hair as I do about my brain and my recovery. But, I do. When I told him I was a little upset about my hair, he looked at me as if I was about to sue him for malpractice. Apparently, my hair comment trumped the superfluous thankfulness. Frankly, I think his surgeon’s ego is a little sensitive.
But, his reaction is not so annoying. What’s annoying is the common reaction of, “it’s just hair,” or “it’ll grow back.” Those stupid platitudes about what, I understand, is just hair. I know. I know. I KNOW. I realize that there are countless other things that I could be worried about right now, and I’m lucky to be freaking out about my hair. I could be hooked up to life support, with a ridiculous case of meningitis, or an infection. Or worse.
There’s this thing that people do when sick people complain: they offer platitudes to try to ease their own suffering, or discomfort at hearing a loved one (or even stranger) complain. The problem is, it doesn’t ease the sick person’s suffering. It eases the suffering of the person offering the platitude. Think about it: when you hear a sick person complain, you are uncomfortable because you don’t like knowing someone (you care about) feels icky. Furthermore, you know that you can’t really do anything to make it better, but, you want to do something. Knowing you can’t fix it makes you even more uncomfortable. To ease your discomfort, not theirs, you offer some empty platitude. This does nothing for the sick person, but superficially, you think “phew, I did something,” and you can think “at least I said something positive!” In your mind, you think that maybe this will make them think positively. Ugh.
Here’s the thing though: it’s my hair. I’m entitled to feel crummy about it. I’m entitled to feel like crap about walking around for a couple of years, looking different than I want to look, different than I’ve looked for over ten years. Imagine waking up tomorrow, different, in a way you have no control over. Now, imagine someone telling you to be grateful about it, because it will go back to “normal,” eventually.
Can we be realistic, for a second? How long do you think it takes for a shaved head to grow back to it’s previous length? I have really long hair, and now, for over a third of my head, I have no hair.
Apparently, I’m supposed to feel grateful for, and not care about my bald spot. I’m supposed to feel like it represents a successful surgery, right!? Plus, I’m supposed to be super happy, because the rest of my hair will “cover” the shaved area. Newsflash, it doesn’t entirely cover it, unless I wear my hair down, and stay completely still. This sounds completely reasonable, as I do tend to stay 100% still, 100% of the time. Furthermore, I am grateful for hair that is reduced in thickness by over a third. It looks luxurious and full. Wait, no, I’m not. Hold on, I’m sounding sad again.
Vanity aside, what’s bothering me the most is that, from the back, I’m identifiable to anyone on the street, as only one thing: a patient. If you saw a person with a shaved head, and a large scar going halfway up their head you would think one of five things:
- What’s wrong with him/her
- What happened to him/her
- Did they have cancer
- MAYBE are they contagious (if you are a germ freak!)
- Oooh…isn’t s/he brave
The worst of this is that now, I’m ONE thing: I’m Chiari (if they ask). If they don’t ask, I’m just some medical “thing,” to strangers. Without this bald thing, I’m faceless and nameless to strangers, which allows me to be whoever I truly am. I’m so many things other than a patient.
Now, this hair thing has made me a prisoner of its causes and definition. It makes me want to wear a t-shirt with other things printed on the back. I want it to say that I’m also a writer, an artist, a mother, a student, a wife, a reader, a lover of animals, so many other things. I’d fill the shirt up with small print. I’m not just a bald head to be stared at.
It’s funny, sometimes I’m proud to show my status as Chiari Warrior, as “zipper head,”; but other times, I want to be able to put my hair over my scar and be able to let it be a secret identity. By having so much hair shaved, I’ve been robbed of the ability to have that identity kept as secret as I want it to be, at least for a while.
So, tell me “it’ll grow back,” or “it’s just hair,” all you want. But, if you want to say that, I challenge you to shave all your hair tonight. Or, I challenge you to dye it all green. Do something drastic that you cannot change, that would force strangers to question who you are, or what you are, on the street. Then, be grateful about it. Be grateful that you aren’t dying, or that it’s not worse.
 In looking up whether or not to hyphenate “zipper head,” I learned that, apparently, that’s a super derogatory term for people of Asian descent, coined during the Korean war. Who knew? Chiarians have re-appropriated it to describe themselves, based on their scar, but now I don’t think I’ll use it anymore, especially since it’s based on the same description (zipper-like scars). We describe our own scars, and apparently GIs described running over Koreans with Jeeps leaving zipper-like marks on their heads! Yikes. It’s like claiming a racial slur and making it positive. Um. No.