Some months ago, someone I really trust referred to my situation as “a tragedy.” I remember snapping at him, “no, it’s an opportunity.” We’ve been insisting that the accident and the resulting paralysis is only a tragedy if we make it that way, but now it seems that there’s something honest in what that much-trusted person said, this is a tragedy. It’s hell. We have been so praised for courage, for keeping on going, for heroism, for fortitude, for it seems practically every imaginable virtue that would be relevant in this situation. But sometimes we both know this praise isn’t really deserved. Sure, there’s something in you, something, Brooke says, even trivial stuff like about how a gentlemen ought to be able to keep a stiff upper lip, but when you’re lying there in the middle of the night, he also says, trying to make it through, you’d give anything to have a normal body--which you’ll never have again ever, ever in your life.
Brooke says he tries to think of all the people who’ve been decimated in wars, riddled with shrapnel, double, triple, quadruple amputees, people who are starving, people being tortured in prisons, people who are dying long, drawn-out horrible deaths in hospitals around the world. But it doesn’t help, not because they’re worse off, if they are (how can we compare these things?)—but because we have to admit that these are all tragedies. This isn’t meant to sound self-pitying, just factual. Of course it’s not only a tragedy; there are amazingly positive things too, as we’ve often said, about connectedness, depth, love. But the moments at 3:30 in the morning, when you know you’re not going to go back to sleep, or this morning when I woke up and saw how gray it was outside, when you realize how almost completely paralyzed you still are, these are moments when you’d just like to sleep forever. But then there are moments when you think that if we can just get through this and come out the other side, just get through it, manage to go places, you could really do things for people.
That person I trust, who has his own experience with spinal cord injury, said that it’s like this—you have an active day, then you have to recover for two days. It’s like that physically; it’s like that psychologically too.
What’s a tragedy? Macbeth is a tragedy, King Lear is a tragedy. They’re tragedies because of the moral failings of the hero; there are dead bodies strewn all over the stage, and only mediocre people are left at the end. I can’t claim that my situation is a tragedy of this sort; what happened to me is a terrible misfortune, but not a tragedy in the same sense. In that sense, I guess, I’m lucky. We can at least try to be honest about this.
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2 comments:
I read your post on getting up after a particularly vivid dream in which I was assured that if I remained patient I would again receive a longed-for letter from my friend. Of course, as usual, I awoke to the realisation he is dead, not just stubbornly silent. By now, 18 months on, the sting of that truth has lessened, but it still makes me sad.
I tell you this because your post today and Peggy’s yesterday remind me of different aspects of the ordeal of his injury and dementia. Yesterday’s post reminded me of the dreariness of long months in rooms that seemed to be grey, though they weren’t necessarily, when nothing much was happening. I wanted him to go on living because the man who remained, despite severe damage, was remarkable and compassionate, a person I valued. But it was clear that this was a personal response and that the essential man was invisible to many, masked as he was by his disability. Those weeks and months stretched out, the extraordinary (his injury) becoming mundane. It’s depressing and awful.
Your post today reminded me of the difficult reality that his friends gave up on him and saw in his dementia the end of striving. When the severity of the damage and poor prognosis were clear, rehabilitative therapy was halted. This barely six weeks after the injury. From then on, it was a matter of waiting it out. One can’t help but ask what incremental progress, small as it may have been, might have changed the course of those last 18 month. So for me, a great deal of the tragedy in his case lies in the decision, on the part of others, to give up on him, eschewing the possibility of progress.
In the early weeks, though, I was present one morning during his speech therapy. He worked hard trying to answer questions, to recall the day of the week or a simple series of words, to recreate a story from pictures. His effort was palpable. That afternoon, he imploded, disintegrating, becoming uncontrollable. The effort had exhausted him. And so it continued over the months; the work of having a good conversation in which he seemed lucid and aware might mean terrifying confusion and agitation shortly after.
Yesterday, trying to think how to reply to your discouragement, I was re-reading his letters. I found this, a reply to my question about whether life is meaningless. He wrote:
“I start from the premise that life is meaningless, a complete void, without redemption, and that you, I, one, responds by imposing meaning on the world by creating a reflection of one’s character on the world.
“In the dark moment of the soul, the time when you truly get a chance to find out who you are and what you're made of, you have the opportunity of determining what kind of world you are actually creating.”
On another occasion:
“Yesterday the Black Doom descended on me and I spent the day doing nothing, waiting for tomorrow, hoping things would change.
“They did.”
He was someone, like you, who knew the extremes of emotional experience. Sometimes he waited out the dark times, but always, ultimately, he worked to impose his will on the chaos. He strove to transcend the awfulness of experience in order to capture the magic and the joy of which we are capable. Odd as it may seem, I think even his dementia was a form of transcendence. Not everyone would agree, but I have reasons for believing that.
Your paralysis is tragic, as was my friend’s dementia. I don’t know how I would respond if it were me lying in bed, staring into the grey, alone but not alone in a hospital or nursing home. I can only hope, as do so many who love you, that you find a way to transcend the awfulness and keep striving for the magic.
love,
Lorraine
Dear Brooke & Peggy
Your hard and very real postings pain me. When you hurt, I hurt. I want to believe that life is all in the mind but the long haul suffering of a damaged body seems very much a flesh and blood phenomenon. The mind part is there but it's just a part. I'm not immune to the seduction of the magical. I want the astounding breath Brooke took some months ago to put him into a state of satori and give him the centered power to breathe on his own in the future. Maybe it will. I want Reiki therapists to work their Eastern chakra magic. But I know that just running my thumbs down his muscles and kneading the back of his neck can make him feel very good as well. One does what one can. Western medicine seems to be working be it ever so slowly. As fingers, toes, legs and arms move, I'm filled with hope at how far down the path of recovery Brooke will travel. I've watched secretions be suctioned from his lungs, the cough and body spasms. I've looked into those lively eyes after a good night and jumped right into our wonderful endless chat about all of it or not said a word when I've come into the room and seen a weary, sleep deprived face exhausted by the endless therapies. There are many Brookes and Peggys inhabiting the bodies we know. In the blog, we've met several. Yesterday Brooke referred to Proust as being sui generis. That appellation could apply to both of you as well I think, so you'll have to forgive me if I watch you two with awe and admiration. When it's just too much and the tears and terrors come, I'm there to hold you too as are many others. We are your friends and we love you deeply.
(To the Blog:) Yesterday Mary and I had a great time playing a few tunes for Brooke, Sara, Matt and Sydney. Seven year old Matt was great. I hope music enters his life if it hasn't already. This led to a dinner invite and we came back in the evening for a slo-cooked lamb shank (please send the recipe Peggy or Sara) and we added a salad to Peggy's feast. Brooke resists being discouraged and doesn't like to complain. I like it when he does. I want him to be wherever it is he is and hide nothing. Ups and downs both work for me. Peggy gave me a great article that I've shared with friends already. I tried to add it to this posting but exceeded the 4,096 character limit so the web address to Mr. Paulnack's great article will have to suffice (http://www.symphonymusicians.com/WelcomeAddressbyKarlPaulnack/tabid/87/Default.aspx). I highly recommend it. It's humbling to read such a profound view of classical music. My line is, "I'm not as good as I used to be but then I never was."
Patrick
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