31 March 2014

Sometimes, Despair

Do I write a post about how hard it is, sometimes, to keep my chin up? About how aggravating it sometimes is, to have asthma that's triggered by upper respiratory infections and by multiple allergies, environmental as well as food, and is also around, year-round, as an underlying thing, and it's not always possible to "manage" and keep from flaring up, and sometimes I just get TIRED, from the medication side effects and the sleep loss and the on-going fatigue of having the disease in the first place, and of over-compensating all the time so people won't see me as being sick or sickly and writing me off? About how sometimes nevertheless I feel I am too sickly and I worry I'm just not doing my job effectively?

And above all else, how I curse the knowledge that I've passed the disease on to The Offspring and he will have to live with it his whole life, unless some day Medicine finds a cure?

But that all feels like whining, and complaining, and we in the kingdom of the sick are supposed to be above all grateful for all that the medical profession offers, not to complain about the side effects or the fact that only symptoms can be treated, because sometimes there's no cure, or when medical assistants treat you like meat (there aren't many of those, the vast majority of medical professionals at every level are compassionate and gentle, but the other few are oh so memorable), above all patient, patient with medications that don't work right, and patient with side effects, and patient when medications that do work well get taken off the market, whether because the drug companies can't make money on them or because the side effects turn out to be too dangerous, patient with the process, the endless rounds of doctors' appointments and medication refills and medical billing errors that will never end until I do.

And grateful for the opportunities Medicine affords to be ferried back, close, so tantalizingly close, to the kingdom of the healthy, sometimes even to travel within it and to pass as one who belongs, but never truly of it, because there's always the knowledge that one slip -- a label misread, a mistake by a waiter, a thoughtless smoker, an unanticipated cat, a virus making the rounds -- will eject me from the kingdom, propelling me forcefully back to the other shore.

Today, the kingdom of the sick is my sofa, surrounded by bottles of pills and glasses of water and medical paraphernalia and books and iPad and my phone. One of the pills will not let me sleep, and so all I can do is stay put, try to rest, try to let my body heal itself. I'm too fuzzy-headed to work, which is probably a blessing, because it means I can't try, but MUST rest.

And these are not first-world problems, exactly, but they are certainly problems shaped and formed by first-world privileges of various sorts, and even as I want to cry out with frustration and fatigue I remind myself of the vast network of privilege that has long kept me alive in these conditions, and still today keeps me relatively comfortable in the dealing with them. 

I write about life with chronic illness because I want to push back against those strong social currents that suggest that happiness is possible only for the healthy. ("Health isn't the most important thing, it's the only thing.") To push back against the not-so-subtle claim that we're in control, and if we fail at health, we're responsible and at fault. And I guess it's also important to acknowledge that it's not always possible to remain cheery. I have to admit to the despair that somtimes comes.