y landlord's wife is dying. Lung cancer. Squamous --- small cell. The worst kind. She's gone "into chemo" as they say. The word is out that there isn't much time left.
I went over to his house in my wheelchair to give him my monthly rent. I also gave him the best words I could muster. Juana has faith, I said. That's what's important... Sometimes, I said, the doctors are wrong...there have always been miracles... The words one always manages to muster up at a time like that.
For the first time ever I saw him sad, sadly befuddled that his wife of fifty-two years might possibly die before he did. He's a good person, a straight-shooter, now caught in the toils of something he probably hasn't thought about very much. He struggles visibly, shaking his head, looking around, furrowing his brow until he realizes that I am watching him. Then he straightens up, looks at me, smiles. He's over seventy; has lost most of his hair; walks a little slower now. But I think he's never thought seriously about his own dying --- much less hers.
When we get through talking, I turn and start wheeling away and he stops me and puts his hand on my shoulder, and says, "You know, Carlos...you're such an inspiration to her. Juana is always talking about you. About how brave you are..."
That one caught me. I mean, I knew Juana talked about me, or at me --- usually to complain about my garbage cans being out in the street, or my barking dogs, or my noisy drunken friends. But to hear him say that to her I was "brave," and an "inspiration." That was new. And my reaction was new, as well.
Thirty --- or even fifteen years ago --- that kind of talk would have evoked nothing but a scowl. As Mark O'Brien wrote, "Telling a disabled person that he is brave is like saying that Blacks have natural rhythm."
The surprise is that I didn't get pissed off at my landlord. And it wasn't just because he was obviously in great pain over the possible loss of his wife, or her great pain over dying. (When people go into "chemo," the medical profession kills them in pieces, slowly, struggling only to save a part of them.)
For the longest time, if someone even mentioned the word "brave," or patted me on the shoulder and told me "You're doing fine!" I would bring out my most biting sarcasm...anything just to shut them up.
But something has changed in the last few years. I've stopped getting angry when kids point me and my wheel-chair out to their mothers. I've stopped getting miffed when people open doors for me (I used to snarl, "I can do it myself, thank you very much.") I've even started telling the travel agency to be damned sure that there aren't any stairs or narrow doors in the hotel I'm going to next week.
Maybe it started several years ago, when I was working as a volunteer at University Hospital. One day, I passed the room where an eighteen-year-old kid was hooked up to all those blinking machines. There were flowers everywhere, get-well cards. The blinds were drawn, and the nurse whispered to me that he had broken his spine --- broken it badly --- in football practice at La Mesa High School two weeks before.
I looked at him lying moveless there and suddenly I had to turn away so they wouldn't see how sad I had become. I know --- me and my friends with all our history, of hospitals, of nursing homes, of rehabilitation centers: we know what his next months and years will be like. And it isn't going to be bravery that'll keep him going. It may be innocence; it may be blindness; it may even be rage --- but bravery will play a very small part in his survival --- if, indeed, he does survive.
He's going to be in another school now. It's called The School of Body. It will have many astonishing things to teach him over the upcoming years.
He will learn what it means to have arms and legs that are no longer directly connected to the brain. He will learn about bowels and bladder that function on their own, without consulting him. He will learn that that site of love, that part of him which --- so recently --- could erupt with so much force, and so much delight, will no longer be able to do either. He will learn what it means when every day --- every day for the rest of his life --- he learns and relearns and re-relearns what it is like to wake up and try to leave his bed and have to remember (once again) that he can no longer move himself, by himself. Maybe slowly, on his own, he will be able to swing himself over, into his chair; maybe it will require the help of others. But it will never be like before.
§ § §
cceptance isn't one of those things that runs out of the house and bites you on the ankle. It just grows up, slowly --- the ficus you planted in the backyard, that, all of a sudden, has grown to be fifteen feet tall --- big enough to give shade to you and the entire house. On its way up, however, it brought along some other noxious plants, some thorns and weeds. When it does finally get to where it should be --- it is often not quite straight.
I think on my now stricken landlord, perhaps as stricken as his wife. He, too, is learning what the boy in the hospital is learning. That the body that walks and moves and dances and runs is easily stripped away from us. That the attempted cure can sometimes come to be worse than the disease. That there may be something out there that will make us almost as we were before, but it probably isn't brought about by unbounded faith. And that the pain of any one of us is never going to be greater than the pain of us all.
Because of this pain that --- sooner or later --- will visit all of us, with equal viciousness, I am beginning to believe that the world is full of heroes.
I suspect my sadness over what I saw in the hospital flows from the knowledge that an eighteen-year-old boy, just at the cusp of his life, is going to have his soul twisted around so forcibly that it will come to be unrecognizable to others, perhaps to himself. It's like those old photographs of Union soldiers, at the end of the Civil War, marching out of Atlanta, and with brute force twisting railroad tracks around trees. Could trains run on those rails ever again?
Our boy will be forced, whether he wants it or not, to be a hero; if not to himself --- then to his family, his friends, and those who have just read about him in the City section of the newspaper.
Hope, the article said. He has hope. They --- the family, his friends, the reporter --- don't know what the word means. They have been deceived by the belief that they understand his pain; they have been deceived, as well, by all those stories from the past; stories by those who dared to use the word "hope" without knowing, for an instant, what it means. Little did they know, little do they know --- little does he know --- how he must, starting right now, fight them and their skewed perception of hope. And little does he know how badly everyone will lose in the process.
One well-known writer, describing her six-year-old son and the cancer that is sweeping through his child's body, said "We are brave only when there are choices."
It was a great koan, and I mused on it for weeks, reciting it to my other disabled friends. But finally, reluctantly, I decided that it was wrong. The best I could do was to amend it to read,
Sooner or later most of us will be forced to be brave --- whether we want to or not.
--- Carlos Amantea