News from the front

When you see me, you don’t see a person with chronic fatigue syndrome. Oh sure, you might take note of my cane, but it’s brightly colored and pretty, and something of a conversation piece. And when we sit down to have lunch or hang out watching a movie, that cane gets shoved to the side and then you get me: laughing, extroverted, goofy. I like to ask people questions and hear the answers, and I like to talk. And unless you’re directly asking me questions about it, I usually don’t harp on being disabled or chronically ill.

When you see me, you see the person I was for more than 30 years before my body checked out on me. I don’t go to the comic shop or the doctor without putting on that front. And I certainly don’t go into social situations without it, no matter how badly I’m feeling that day.

Fronting takes energy. As it is, I go into energy debt after a social event or even a trip to run errands, and putting on my front exacerbates that. The thing is: I have no idea how else to be. I actually don’t know how not to front. I’d feel like I was acting if I slumped over in the car (with someone else driving of course) and looked the way you think of people looking when they feel like I do.

I was never taught how to be a sick person. My life lessons, from my parents and teachers and experience, taught me to create my own success, to love achievement and exploration and playing and learning and making friends and having fun. I grew up pushing myself and being pushed — and I liked it, very much. I wasn’t a classic Type A personality but if you had to categorize me, that’s where I’d go. And then pretty quickly, I went from that person to the exact same person, only in a broken body that didn’t allow me to be that person. Now I daily encounter limits that I’ve never had to deal with before. Having the most basic human right, control over one’s body, taken away by my own body is a thoroughly bewildering situation to be in.

Navigating these physical limits has become comparatively easy, although don’t mistake “easy” for “pleasant.” I’ve had to curtail most of my activities, including working, volunteering, and school. (The psychic toll of this is not, however, what I’d call easy.) My wonderful husband takes care of all those everyday errands — picking up my prescriptions, doing the grocery shopping — that can put me into a day- or week-long crash. I carefully consider social events: what else will I have done that week? Do I have anything important the next few days that I cannot be crashed for? And even when everything seems clear, my RSVP is almost always a maybe — although for sure there are “yesses” I do not pass up no matter how badly my body might decide to punish me for it later. I’m resigned to the punishment, you see…used to it, so its threat is sometimes just not that dire when I really want to enjoy other people’s company.

And we’re back to the front. So much of the time it’s not even conscious. I don’t struggle to maintain it because it’s still who I am. I’m not laughing harder than usual, or working harder to smile or listen: I’m just being myself. And that self costs a lot of energy, but I simply have no idea how to train myself out of it, and I don’t know that I want to. I’ve already lost so much; do I also have to sacrifice my own personality just because I might possibly not feel quite as sick the next day? And what kind of person would I become, anyway? Quiet, glum, and unengaged? Feh. Believe me, I have my private pity parties and they’re nothing you’d want to attend.

So when I have a nice chit-chat with a stranger, or enjoy a night out with friends, or a romantic dinner with my husband, I’m glad that the front comes up. I’m glad to feel normal again for that period of time. It makes me feel like my old life isn’t just a distant memory, and that I still have a hold, even if a shaky one, on who I was and who I am despite this new, alien existence of mine.

When you see me, you see the front, but that front is the real me.