Sunday, July 25, 2010

Friendship Transformed

            A few months ago we wrote a blog called Desire Transformed.    Now we want to explore another complexity of human emotion, one also transformed so to speak by the situation in which Brooke and those around him find themselves.  This is about the different sorts of love that have emerged—forms of love we didn’t, in our conventional lives, know existed.  This is just one of them.

               It should be perfectly clear from the writing we’ve been doing in this blog that the bond between the two of us, Brooke and Peggy, is enormously strong, and is the result of years of intimacy on all levels—physical, emotional, intellectual, and more.   It sounds entirely conventional to say this, but it’s a love between two adults who have lived together for thirty-five years, maturing over time.  But it has also been an enormously powerful friendship, one among the several kinds of love.   It is usually assumed (at least in contemporary times, though not for example by Aristotle) that friendship is inferior or subordinate to love, that love is the most important thing, but we don’t think it’s as simple as that.

My accident, says Brooke, has produced a different kind of growth.  It’s Love Under Trial---that’s the title we project for whatever book we might eventually write—and even the darkest moments have opened up to new clarities.   We’ve become aware, of course, of how much we owe each other.  We are each profoundly amazed by the other’s courage, even though weakness and the risk of defeat is always lurking around.  We admire each other’s connectedness to others and ability to give to others, Brooke especially, even when in pain.  This in turn has strengthened our love-bonds with others.

If this accident hadn’t taken place, or something equally challenging, our lives would have been played out within a network of friends, relations, acquaintances, colleagues, that was eminently satisfying.  We hadn’t any complaints, and knew how lucky we were. 

            Now, however, friendship is coming more clearly into view, fused with a kind of love that it is difficult to describe.  It’s about reciprocity, in part, sometimes a kind of reciprocity of anguish and suffering.

Yesterday afternoon, we were visited by a couple, R. and J., whom we knew years ago as backpacking and skiing partners—we camped in the Uintas and skied in the Wasatch—but we’d been out of touch with them for a number of years.  We’d get Christmas cards showing how their kids were growing up, and we’d run into them occasionally at parties, but with brief contact.  You could say that our friendship had lapsed, like a religious belief that fades and loses force, though it doesn’t entirely disappear.  But circumstances have changed for them too:  R. was diagnosed about a year ago with ALS,  Lou Gehrig’s Disease, or what the British call motor neurone disease.  It produces gradual loss of all motor function, including speech and eventually breathing, ending in death.  It’s always been my idea, Peggy says, of the disease you’d least like to have.  And now our friend R. has it. 

            When they first brought dinner for us at South Davis, R. looked at Brooke, lying motionless in bed and then still on the ventilator, and said, That’s me in a couple of years.  If I’m lucky.    R. and J. have come several times more, and each time R.’s disease has worsened a little—a hand loses function, an arm, then the muscles of speech weaken.  But yesterday when they came, there was a new depth between these two men, both of whom are learning the ways in which one’s body can slip out beneath you.  We are our bodies, it is fashionable to assume in contemporary thought; but it doesn’t feel this way: one feels as if one’s body had failed you, while you’re still there.  Brooke says he feels as if the phantom of his old body was still trapped within him, trying to get out; R. feels his slipping away.  But even though they’re not in quite the same circumstances, these two victims of the frailties of the body nevertheless communicate at a level the rest of us can barely understand.   They know, or are coming to know, how one both is and isn’t one’s body, something mere friends wouldn’t ordinarily discuss or even understand.  That it’s something these two men do both understand is perhaps the basis of the deeper love that has begun to flower between them.  One lies there in the bed, talking but unable to move; the other stands there, moving but less able to articulate his speech; but they speak to each other in a way transformed, far far beyond the light banter of trail gossip or skiing talk or the superficial greetings at parties that were our previous fare.   Is it friendship?  Is it love?  Is there any point in trying to distinguish between them?

            We always knew how lucky we were; we just didn’t know that in certain ways, even in the face of tragedy, there’s a way in which, in a very special sense, you can be even luckier.

Why so quiet?

          Wonder why we’ve been so quiet on the blog?  We’re in the process of getting ready for Brooke’s coming home, currently anticipated for August 17—this means finishing house modifications—for example, the lift--, hiring adequately training staff for 24/7 care, obtaining home-care equipment, trying to figure out how to control some rather substantial pain, and in general preparing ourselves emotionally for a substantial transition.   Substantial, that is, unless you-all continue to call, visit, come to read, talk, cook, and enjoy a less clinical, we hope more relaxed environment—with however many of the same nursing-care resources ready quietly in the background. 

Saturday, July 24, 2010

Note to Elisabeth

Elisabeth (but who?) asks in a comment to the previous blog if this is the same Brooke Hopkins as the author of "A Question of Child Abuse."  Yes, it is--and he's published some other autobiographical material as well:  "A Boy's Story," for instance.  Thanks so much for asking.

Saturday, July 10, 2010

Date Set for Homecoming?

After a year and eight months in various hospital settings we’ve finally had a meeting here at South Davis to discuss plans for Brooke’s discharge to home.  Things are looking promising: he’s been fully independent of the ventilator for over three weeks, and the diaphragm pacer is functioning well.  His trach is capped for most of the day, routing his breathing in and out through the mouth and nose.   Today, he was down to room air (21% oxygen) from higher levels of oxygen he was given after his attack of pneumonia.  In general, the respiratory stuff is going really well.  While the skin tear on his ischial still hasn’t fully healed (after nine months), we’re hopeful that with the new dressing it will, even though we recognize that that might delay homecoming plans.  Just the same, we’re focused on the tentative date: August 17.


The meeting was held to explore what’s necessary for coming home:  nursing needs, therapy needs, house modifications, transportation needs, ete. etc.—or more realistically, etc. etc. etc. etc. etc.  There are dozens and dozens of things still to take care of, even though we thought it was all accomplished months ago.  There’ll be yet another home visit to inspect the house, and yet other meetings to fine-tune details.

We are looking forward to this homecoming with a mixture of joy and excitement combined with considerable agitation and worry.  After all, we have not lived in the same house together since Brooke’s accident, and have never lived with other people around all the time; there will be huge adjustments to be made in our daily lives.    We’re told that nearly everyone who goes home after a spinal cord injury suffers from intense if  temporary depression, because they are surrounded by the environment they knew so well before the accident, but cannot enjoy it in the same way. Everything reminds the spinal cord victim of the contrast between then and now. 


Brooke says he is trying to prepare himself mentally and psychologically for this transition, but even now—as far in advance as five weeks—some depression seeps into his mental world.  What will it be like to be home again, surrounded by objects, memories, and yet be almost completely paralyzed and incapable of living in the way he had before?  He’ll still need periodic suctioning, straight-cathing six times a day, turning every two hours all day and all night, not to mention feeding and bathing.  How will we adjust the house so that Brooke can work in it?  There are so many unknowns here that one is tempted to fill in a future blank with projections, often of a disturbing sort.  Brooke thinks that the next few months after homecoming will be the greatest challenge of this entire  spinal cord odyssey, greater in a way than the ICU,  the pneumonias, vent weaning, surgeries, infections, and the rest of it.  After all, those have been challenges of a largely physical nature.  Now, however, everything bears down emotionally.  What can it be like to be outside this one room, where I’ve been for a year and three months? The room has come to signify all sorts of things, among them, oddly enough, safety.


            Peggy says that the anxiety preceding her hernia surgery was worse than the aftermath of the surgery itself.   But this is different, Brooke says—it ain’t going to be easy.  It’s going to take all the strength and compassion we and also our friends can muster up to help us go through this transition.  For me, Brooke, the bottom line is simple:   I have to learn to live with helplessness.  There’s a lot of fear involved here, and depression creeping up as well.  But I also have to remember the ways in which I’m not helpless.   I can still think.  I can still teach.   I can still read, if it it’s by means of books-on-tape or having friends read to me.   And I need to have compassion for people around us, friends and caregivers, because this anxiety will find them too—how can they help me, when it seems there’s so little to be done?  How can they ease the neurogenic pain I still have so much of the time?  How can they disguise their dismay when the bed is wet again or their fright when I can’t breathe and I need still more suctioning?  How hard is it for them to see me struggle?   I think they will have some compassion for me, but I think I’m the one who needs most to achieve compassion for others, given what being around me will impose on them.  Not that they don’t do it willingly; I know that it is utterly genuinely meant, but it’s still hard.


            Just the same, I’m still looking forward to coming home.