Tomorrow, March 3, 2010, will be the first anniversary of our stay at South Davis. We’ve been reading over the blog for February 2009, leading up to the transfer from the University inpatient rehab unit to this skilled nursing facility at South Davis, and we discover that we expected to stay at South Davis for “a month, maybe two.” We thought Brooke would be weaned from the vent in that time and we’d be on our way home.
Obviously, this did not turn out to be the case. Not even nearly. He’s been at South Davis for one entire year, a long-timer, though not nearly as long-timer as some of the residents there.
In many ways, Brooke says, this is the saddest night of our whole time at South Davis. We’re talking about hard things; it’s not a kind of candlelight and roses anniversary. His nerve pain has flared up. He’s having respiratory troubles—probably a cold, requiring lots of extra suctioning. He’s got continuing return of sensation and movement, but it’s pretty modest and doesn’t translate into real function. He’s got MRSA boils in various places, including his scalp. He didn’t have pain for a long time; now he’s got pain everywhere. There seems to be no end to the various troubles in sight. And perhaps most difficult, Brooke says, we still have no word on a date for the surgery for the diaphragm pacer—something first mentioned to him as a possibility way back last summer, and infinitely postponed.
Part of what’s astonishing is our own naiveté. Optimism is part of the culprit here, but another part is the institutional way in which patient misconceptions aren’t corrected—a sort of shadow side, one might say, of informed consent. The patient is supposed to have the right to be told the truth, but apparently not the right to be corrected if he gets the truth wrong. Right after the accident, we thought—and said aloud, in front of many hospital personnel—that Brooke would be discharged February 3, 2009—after all, that was the discharge date listed on all the paperwork. Then it advanced to March 3, 2009—but those dates, we later realized, simply marked termini in insurance coverage. No one corrected our misconceptions. Then it was intimated, we thought, that Brooke would have the pacer and be home by the end of the summer, then by early winter, and so on. Some of the delays were certainly understandable—for example, it was remarkable how dedicated the doctor and his staff were in preparing really thorough and persuasive information for the insurance company—something I’ve been told appreciated by the company itself as well. I respect that thoroughness, says Brooke, but it is still frustrating not to know anything about what arrangements are—or are not—being made. As it is, we were told to start getting ready to go home three or four weeks ago, and indeed we’ve speeded up household preparations, but still nothing is happening, or at least nothing that we’re aware of. This state of prognostic limbo produces, as you might guess, depression.
Meanwhile, Brooke says, people will come and talk about rosy things, trying to cheer me up. It doesn’t work in depression (though it’s wonderful at other times). It’s not their fault, and I am grateful for their concern; it is hard for them to see what is sometimes the case. Of course there are wonderful moments, but this isn’t one of them; it’s the saddest night. Besides, it’s partly our fault: reading back over the blogs from a year ago, when we were just on the way to the South Davis, we can see that we always tried to find a way to say positive things on the blog, pointing to every little gain, letting our gaze glance away from the really difficult stuff. It makes me sick to my stomach, says Brooke. It’s the two sides of my personality, he says, the rational and the irrational; they’re at war with each other when things are tough.
After all, there really are positive things to say, both about South Davis and about Brooke’s situation in general—lots of them. Lots of them. Right at the moment he’s being cared for by one of the kindest and gentlest (and strongest) aides in the entire place, even if many are kind, gentle, and strong, and by repositioning Brooke and with a small amount of pharmaceutical help, Brooke is finally out of pain, comfortable. Now Brooke is thanking the aide, the same man he’s been coaching in English pronunciation, thanking him genuinely and profusely. And now they are talking about how difficult it is to say I love you to others—the aide tells a story about how difficult it was as a child to say this to his grandmother, even though it was perfectly true. So here’s it is only a few moments beyond what we wrote earlier, Brooke and the aide talking about how to express love, something they are obviously both doing. It is wonderful to hear. But it is something only possible I think here in the seclusion of our year (so far) at South Davis; it wouldn’t be part of ordinary institutional life.
And now we’re thinking again, as we did earlier in this blog, of Coleridge’s poem known as Ode to Dejection—a poem that takes the reader through the process of beginning in despair and ending in some kind of cathartic emotional release. Less than an hour ago Brooke was howling I can’t do this anymore, this is too hard, I’d put a knife through my heart if I could, and Peggy was saying it would be like putting a knife through her heart too--hyperbolic talk, perhaps, but expressing real pain. But now we are talking about love at a deeper level—including the kind of love just shown Brooke by the kind and gentle aide, how it in itself alleviates some of the pain and suffering that has been such a part of this year. Brooke had said, I wish I could tell you how much I appreciate what you’ve done for me, and he said, You did.
Maybe this isn’t the saddest night after all. Maybe it’s just a miniature example of the kinds of emotional swings and wars within ourselves we all go through all the time. Life is hard in lots of ways, and for lots of us, but fortunately it isn’t hard all the time.