Illness is Not Discrete. On Feeling Sick, and Not Knowing What’s Next
This post is probably a bad idea. But I’ve been pondering it for two days now, since the room around me starting spinning. And I wish I were Jack Kerouac now, so that it wouldn’t matter so much if my thoughts are clear but that I tapped them out. Rat tat tat. Or Frank Sinatra with a cold. You’d want to know either of those guys, in detail. Up-close, loud, even breathing on you. You’d hire ‘em. Because even when they’re down, they’re good. Handsome. Cool, slick, unforgettable. Illness doesn’t capture them, or define them.
Two days ago I was feeling great. I went to the National Press Club for the first time, and was excited about some presentations I heard there, about which I took careful notes and intend, eventually, to share with some commentary. It was a sunny day, and I bought some groceries, planning a bunch of posts and to finish a freelance piece. In the evening I had dinner with my husband, and it seemed like my life was on track.
The rash was the first thing. Just some red, itchy bumps on the back of my neck. And then fatigue. Not just a little tired, but like I couldn’t write a sentence. And since then I’ve been in the center of a kaleidoscope, everything moving clockwise around my head. It’s not bright purple or hot pink and blue and stained glass-green kinds of colors circling, but the drab objects in the bedroom: the lamp, the shadow cast by the top of the door, the rows of light through the blinds, the brown and beige sheets, the back cover of last month’s Atlantic and my reading glasses on the nightstand, the gray bowl I’ve placed at hand, just in case I barf again. Walking is tricky. I’m dehydrated and weak, and my vision’s blurred.
This is not a pretty scene, if you could see it. And that’s the thing. The point.
Because in my experience, which is not trivial, people on both sides of illness – professionals and people you just know – are drawn to healthy people. A broken arm, a low-stage breast cancer that’s treated and done with, a bout of pneumonia – these are things that a career can afford, an editor can handle, friends can be supportive. But when you have one thing, and then another, and then another, it gets scary, it weighs you down. Just when you start feeling OK, and confident, something happens and you’re back, as a patient.
Today, in the apartment on this spring day, with fever and fatigue, I’ve got no choice. I am not a consumer now. Not even close. That is my role, maybe, when I go to the dentist and decline having x-rays or my teeth whitened. No choice, except if I go to a hospital, to have a bunch of blood drawn and my husband would fill in the forms before the doctors who don’t know me in this city inform me I’ve got a viral infection, and labrynthitis as I’ve had a dozen times before, all of a sudden, disabling. Nothing to do but rest and hydrate. And wish I’d gotten some other work done, but I couldn’t.
I’ve got to go with it, my health or illness, be that as it is. No careful critiques of comparative effectiveness research today. No reading about the Choosing Wisely guidelines. No post on Dengue, as I’d planned for yesterday. Like many people with illnesses – and many with far more serious conditions – I’m disappointed. Maybe because I was sick as a child and missed half of tenth grade, I have trouble accepting these kinds of disruptions. Illness represents a loss of control, besides all the physical aspects.
I might try to watch TV, but more likely I’ll just fall sleep again. That happened yesterday. And for those of you health IT or gadget guys reading, who talk about smart phones and how useful they are for patients seeking info, or maybe even checking vitals, I’ll say this: I’m just glad I’ve got such a device, simply that I can call for help, that I can be in touch, call my doctor and family. That makes being sick less scary.
This is a drag of a post, but it’s real. No point in blogging if I don’t say it like it is, what I am. If nothing else, this proves I’m alive. So there!
Better tomorrow –
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Dear Elaine,
I’m not sure if you’ll see this because it’s months after you published it, but thank you for writing this. I am sick a lot too, with a number of issues, and you really articulated the loss of control that usually comes with that and how frustrating it is.
As you described, illness changes your role in society. I’ve found that too. I find it easier to emotionally and physically cope with illnesses that allow me to continue playing the role I want to play — whatever that may be. I guess it goes back to the issue of control you were talking about.
I can also relate to the change in health you described and how it hits you, as a disappointment and disruption, among other things. Feeling great and then bam. I feel awful; everything is harder; my role changes and I lose control. Ugh. But for some reason, I never expect it. Maybe it’s denial. Maybe I just feel too good to remember what illness feels like, to anticipate that it’s around the corner. Or maybe I just want to pretend that it won’t come: I’m not feeling good for a fragment of time; I’m healthy in general. Or maybe it’s not around the corner. Maybe it’s around a few corners. I just don’t know. Ugh.
How are you doing now?
-Ashley
Hi Ashley, Fortunately I’m feeling better lately. But I learned, years ago, never to take a healthy month or moment for granted. -Elaine