Saturday, August 15, 2009


This morning Brooke had an extreme version of an experience he has had ever since he entered the hospital, especially South Davis, and that is an uncanny sense of unreality, of the unreality of the enclosed world that he lives in, even if it is peopled now by familiar figures who have been caring for him for the past eight and a half months—five and a half here at South Davis. All of you who have had extended stays in the hospital must have experienced something like this, the feeling that you were both there and not there at the same time, or rather the feeling that this couldn’t be happening to me. For long stretches of time, one doesn’t even think that one is in the hospital, one’s mind is constantly churning thoughts. But this morning’s experience was somehow a little different, and more extreme.
What Brooke experienced made him feel like he could almost tip over the edge into insanity. The people around him—the respiratory therapist, his aide, his nurse—did not seem real at all. He even asked the respiratory therapist if she were in fact there or not, and she responded that she was very much there, and that if he wanted to know that, she would offer to let him bite her. During the trach mask trial that followed, he continued to experience this sense of unreality, of near-tipping into a semi-delusional state. He even thought of stopping the trial and calling Peggy to ask her to make an emergency call to his psychiatrist. But somehow he pushed through to an hour and forty minutes, just barely making it before he almost collapsed mentally when it seemed that there was no answer to his summons on the call light.
Gradually the sense that the world outside was a dream, or a nightmare, or whatever, subsided, but while it was happening it was very real and extremely scary. It had followed a very difficult night in which he could not regulate his temperature. He’d awakened around 2:30 in the morning and slept fitfully the rest of the night, feeling both hot and clammy and frozen, as if he had been put in a meat locker. Whatever he did, wherever he had the fans moved, he could not get comfortable, freezing and burning at the same time (as our friend Polly says, like malaria). No doubt this accounted for his strange mental condition in the morning. But whatever the cause, the effect was extremely disturbing.
There are many physically hard things about the effects of this spinal cord injury, but somehow this particular psychological one beat them all in its terror. The brain has a way of defending itself against physical pain, but it has no way of defending itself against mental derangement. In fact, that’s precisely the problem. When the brain becomes deranged, it can’t defend itself against anything, only try to hang on to what physical reality exists outside of it. Many of you know what it’s like to suffer serious physical injury. You detach yourself from it—that’s the brain’s mechanism for keeping some kind of control over pain. But madness is a different story. When your brain starts to dysfuntion, all you can do is cling to some familiar things outside you, and wait—if waiting is the right word--for the mental spasm to pass, hoping that it will pass. Fortunately, Brooke was able to hold onto some sliver of “reality” while he spent two or three hours in that dissociated state. This mental stuff is part of the experience; extreme physical discomfort is only part of it.

Peggy’s note: Brooke has just dictated these paragraphs to me, including describing himself in the third person. But now we’re sitting on the porch at South Davis that looks out over the valley and the Great Salt Lake; we can see Antelope Island in the distance. We’ve described it to you before as a place we’ve often hiked, and where we now sometimes come to watch the sunsets. It’s midafternoon now; there’s a fine hot sun, a bit of a refreshing breeze, and a clear view of the outer world. Brooke is happy that this still exists.
Later in the day, he did another two hours off the vent, and was lucid, self-reflective, and indeed content by evening.


Lorraine Seal said...

Dear Brooke

I'm reading every day, even though I haven't posted recently. That has to do with my own struggles, beset now as I am by a muffling depression that has muted me. I've been trying to hold onto my own self as well, and I'm feeling fearful of losing my sense of the reality of that self. So of your experience, I have much to say, though I don't know I can say it now. I just want to post a quick note to say I am reading, I am still following you and thinking of you.

with love,

Steve Adams said...

trial message.

Steve Adams said...

this is just a test.

Anonymous said...

dear Brooke,
I remember that sense of unreality you describe, though only as a caregiver. Somewhere into the second year of caring after Jackie, a year in which the morphine she was on began to take a serious toll, I was looking out through a high window of the Boone County Hospital, over the town where I'd grown up. I could see little people down there going about their business as if nothing were happening. It seemed unreal out there, a million miles away, and the sense that I would go back to that world, when Jackie so clearly would not, also seemed unreal. These feelings were important to me then, though I didn't know why, and still don't, but I figured that I would and should remember them nevertheless.

much love,

Kathryn Fitz said...

Dear Brooke,
I know those feelings of unreality you’re talking about. I got them when I was a kid, around 12, a time when I also got panic attacks. Though they were two different things (the panic attacks resulted in being unable to breathe and the unreality attacks didn't), the unreality attacks were also very scary. They could hit any time of day, but I remember them especially vividly when I was walking to school with friends. They would be chatting away, and I was walking right next to them, but it was like we were in different worlds. My body seemed unreal, unattached to my head, but my head seemed unreal too. I didn’t even hear what my friends were saying because I was working so hard at trying to make things real again. And I did wonder if I was going crazy. Eventually the attack would pass, but they came back frequently for a couple of years. I just want you to know you’re not alone in having those feelings, though, ironically, part of the feeling is of being totally alone. I wish I could tell you how to get rid of them, but I don't know. For me they eventually went away, pretty much for good. What you can do that I couldn’t, or wouldn’t, is tell people about it. I think that would have helped.
We’re thinking of you always.
Love, Kathy