(Written by Brooke and Peggy together)
Brooke’s been at South Davis since the 3rd of March, two months now. All the days seem the same, with the seemingly tiniest variations: they all involve turning every 2 hours, straight-cathing 5 times as day, 3 doses of medications (with the sleeping pill sometimes a bit delayed), one suppository and one event of bowel care, 4 episodes of CoughAssist respiratory hygiene, and 2 periods of vent-free breathing exercise. Mondays Wednesdays Fridays, add a shower. Tuesdays and Thursday, physical therapy in the bed; MWF in the chair or on the mats. The doctor is supposed to come on Tuesdays and Thursdays, but he’s more free-spirited than that, and could turn up at almost any hour. The nurses and the aides and the lady who takes the food orders and the folks who collect the trash (at least 4 times a day) all come in and out of the room with predictable frequency.
This pattern might seem monotonous. But there are rhythms in it that might not be apparent to outside observers, rhythms of good days and bad days, cycling along behind each other in a larger forward movement in the process of weaning off the vent and seeking regained function and mobility. The good days are days in which Brooke extends the amount of time he can breathe off the vent: two weeks ago it was almost an hour, then last week an hour and fifteen minutes; today he hit a new record for a single session: 90 minutes in a row, followed by another 30 minutes in the late afternoon, for a total vent-free time of two hours today. This is splendid! But the pattern of progress plays off against frequent failures (though one never hears this word spoken here), when the most he can manage is 30 minutes, 20 minutes, sometimes just 7 or 5 or maybe none at all. The good days are exhiliarating but the bad days, psychologically speaking at any rate, feel he says much like the depressions he used to suffer from for years. Physically these bad days are often characterized by terrible spasms, especially over the last several weeks the severe, vise-like spasms that grip him around the chest, plus a sense of physical exhaustion that is difficult to bear over the course of a day. Of course, the physical and the mental distress are inseparable from one another, and when one of these days occurs it is very hard to hold on to the knowledge that a bad day like this will be followed by a good day, in which energy returns and the world looks beautiful and hopeful. Others have told us about this phenomenon, most notably Brooke’s mentor and friend Dale Hull, but no matter how many times advice is given it never mitigates the enervating feelings created by the spasms and the terrible chest muscle contractions that make him almost rigid, like a board. Depression always accompanies these physical symptoms.
In an earlier entry on this blog, Brooke said, I don’t feel depression, and I can’t afford to be depressed. But the pattern that has emerged over the past two months has made me modify my over-confident assertion. Just the same, I think the fact that I now experience depression is in a way a kind of gain: then, it was true, when my sheer survival was less certain and nothing at all could be predicted about my future, I really couldn’t afford to be depressed; now, as my physical condition is more stable and I have some return of sensation and movement, I am beginning to be able to afford to be depressed. It’s a biological sort of depression associated with spasms and pain, not so much anxiety about the future or grief over the past, and as I said it comes in rhythm patterns—good days, bad days, good days again. But now it is possible to recognize depression, and while I am not so strong as to be able to embrace it, at least I can look it in the face. It’s here, no doubt about it; but so are the good days too.
In the bipolar disorder that I’ve suffered from for about fifty years of my life (now dramatically reduced by wonderful help in trying to understand its developmental roots and also by great psychotherapeutic drugs), depression lasted months, followed by mania that lasted about the same amount of time, but was always accompanied by the gnawing feeling that there would be a terrible payback once the mania disappeared. Here, the pattern is on an almost day-to-day basis, and the days of this physical and mental depletion are the result of exhaustion from the hard work of the day before: breathing, having one’s limbs manipulated, standing at a 30 degree angle on a tilt table in order to strengthen his bones and his cardiovascular function, and so on. You could say that there is progress in bipolar disorder if one decides to learn from it and to make something out of it; but here, progress is much more palpable. The goal is to wean from the vent, and every day—at least, every other day, every alternating day, brings us closer to this goal.
Peggy and I sat on the little balcony of this hospital this evening, I in my wheelchair and she feeding me Mexican food, washed down with beer, to celebrate Cinco de Mayo. The balcony faces west, looking out over the Great Salt Lake and the island in the middle of it, Antelope Island. The sun lowered gradually, reflected so brightly in the shallow waters of the lake that it seemed to make a second sun; it tinged little clouds with luminous edges, and after it sank behind a large dark cloud for some minutes, it reappeared just above the ridgeline of Antelope Island, glowing bright yellow-orange, before it disappeared for good. That ridgeline is one where we have hiked often, one of our favorites hikes; but it’s not missing this that’s the focus of depression but only the physiological bipolarity of these days.