Sunday, October 16, 2016

Hospital couture

Looking back on my most recent hospitalization – when I was feeling well enough to observe more than in the days right after my surgery – I’ve been thinking about the importance of the clothes people wear in hospitals.

The staff are mostly in uniform. Doctors wear white coats, usually with some kind of business clothing underneath. Some aides wear clothes of particular colors. The meal service people wear uniforms that make them look a bit like waiters. Only the registered nurses, if I’m remembering correctly, are generally not in uniform, though Teresa feels they wear “scrubs” of their own choice, and that many of them are wearing Dickie’s, a brand of work clothes. All of this, of course, makes it easy for everyone to tell who is who, and also to say where in the hospital hierarchy each group of people stands.

But I admit my focus was more on my own clothing. When I came in, I returned to the hospital gowns I’d been put in right after my surgery. These gowns, as I understand it, are designed to be as easy as possible to remove for purposes of medical care. The sleeves, in particular, aren’t actually sewn together; the front and back of each sleeve get snapped together as part of the process of putting the gown on, and they can get unsnapped as needed. So if, say, you have an IV in your arm, you can unsnap your gown so that the whole gown can be removed while the IV remains undisturbed; if you had on a regular shirt, you wouldn’t be able to get it off without first removing the IV. This easy access is probably very helpful, but the design is not intuitive: the first time I had to put one on, I had no idea how to do so!

The most important feature of the gown, however, is that it opens in the back. It’s cinched together with a couple of ties, but in my experience the cinching-together isn’t that firm. I assume that this feature too is part of ensuring ease of access for treatment, and I think it’s probably true that having the gown open in the back is less potentially embarrassing than having it open in the front. I should add that you can get a robe to put over the gown, unless no robes are available; in that case, your only option is another gown, which you put on, in effect, backwards, so that this second gown opens in the front. It’s fair to say that the whole arrangement isn’t particularly supportive of patient privacy.

When you come out of surgery, privacy is far from your top priority. Many patients, as they dutifully get out of bed and slowly walk the halls as part of their recovery, are still on urinary catheters. These tubes, and any others hooked up to you, are all visible as you walk the halls, and since other people have their own tubes, I think there’s a shared acceptance that this is just what’s involved in recovery.

But when I returned to the hospital with cellulitis, I felt much better than my fellow patients just out of surgery. In the days that I was there, Teresa caught on that I actually could wear civilian clothes instead of hospital gowns. So gradually I did. It took till nearly the end of my stay before I finally was wearing just regular clothes – for some reason I held on to the hospital’s non-slip socks the longest, even though I was wearing them inside shoes. But when I did begin to dress like a regular person, it felt great! Maybe the way to explain that is to say that I felt more like a person who happened to be in the hospital, and less like a patient – but all I’m really sure of is that it just felt good to be dressed in a normal way.

Dressed in my civilian clothes, a couple of times I accompanied Teresa from the 16th floor, where my bed was, to the hospital front door as she went out to get a meal for us (the hospital food, which I’d found quite satisfactory when I was just out of surgery, paled somewhat on my second stay). In fact I actually went out the door, with no one raising any objection at all, even though a close look would have revealed the IV hook-up still in my hand or arm. Someone more daring than I might even have gone out for a meal.

One more thought: as I’ve mentioned before, part of what I did while I was recovering from my surgery was to read South African anti-apartheid activists’ accounts of being held in solitary confinement without trial for prolonged periods. I don’t at all mean to equate a good, caring hospital like Memorial Sloan Kettering with an oppressive prison – and yet these institutions have some similarities, because in each the occupants (the patients, or the inmates) are so profoundly governed by the institutions’ operations, whether those operations are benign or otherwise. So I think it’s really striking that Albie Sachs, when he was detained without trial in South Africa in the 1960s, used to dress for his interrogation sessions. In far, far more trying circumstances than mine, he too was asserting his status as a person, and a person capable of grooming and self-presentation, and not just the subject of an institution’s attention. I do now understand, at least a little better, why it mattered to him.

Thursday, October 13, 2016

Chemotherapy on Yom Kippur

Tuesday night (two nights ago) Yom Kippur began with the moving Kol Nidre service. Teresa and I were there – Teresa’s Catholic, not Jewish, but she comes to Kol Nidre to support me – but I was not fasting, as most people around us probably were.

Why not? The immediate answer is easy: our rabbi reminds us every year that Jewish tradition teaches that health comes first. Since chemotherapy saps your energy, you need to eat; and since it burdens your kidneys, you need to drink. Therefore no fasting, especially if you’re scheduled for chemotherapy the next day, during Yom Kippur itself, as I was. (Could I have scheduled the chemotherapy for another day? Perhaps – but I’d have hesitated to try, since I feel that I’m just getting the new, post-surgery chemo schedule to begin to become steady and routine.)

Still, doesn’t the failure to fast mean that I missed something of what Yom Kippur is about? I could say, of course, that chemotherapy is at least as unpleasant as fasting. But that really misses the point. The purpose of the fast is not to experience unpleasantness but to use this time of abstinence as a period of self-reflection and growth. Chemotherapy can certainly be unpleasant but it demands your attention for itself: you don’t reflect much on your moral nature when you’re worried about whether the intravenous drug will hurt as it goes in (it did hurt for a few minutes, until they diluted the infusion with more saline) or whether the draining and reloading of your pump will go smoothly (fortunately, yes).

So was the failure to fast a moral debit? I would like to think not. I’d rather think of it as an act of moral kindness. One of the complex lessons of Yom Kippur is the importance of dealing gently with yourself. Honesty is very important, but “corrosive honesty” is a mistake, ultimately because something corrosive is not loving, and we are (as our rabbi said at Rosh Hashanah) to love ourselves as well as our neighbors. Somewhat to my surprise, I’ve found that having cancer has helped me see and feel these points more clearly. I don’t regard my illness as a death sentence, but of course it raises the possibility of mortality, and perhaps – as with the man sentenced to be hanged in the morning, whose mind (said Dr. Johnson) is as a result wonderfully concentrated – that sense that the stakes are now really high helps to put other issues in their proper perspective.

Cancer is a part of life, and having cancer doesn’t mean that moral demands cease. But it can help you to treat yourself, as well as those around you, with more love.