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March 26, 2006


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Talking to her over the phone, or especially through a chat room, you would never guess the pain my wife lives in. Meeting her in a grocery store, her friends in the neighborhood ask why she needs the cane, she looks so good. My wife, Jeanine, wants to be normal and not noticeably handicapped, and will fall four times getting the right bright outfit for a day’s shopping.

I have tried to write poems about Jeanine’s illness, to help me understand it, because that is what I do. It is my outlet. But I can’t get very far with poems, can’t get to the slightly stepped back appraisal of the phrasing, can’t carry the images for a few days to roll around and stack against each other. I just cry, and that becomes the outlet.

With the number of possible sources, it is difficult to know when any individual pain episode is tolerable, or in a new joint today, or masked by other pain. We’ve come to know them the way the proverbial Eskimos know snow: shaky pain; sharp thready pain; dull ache; dizzying, vomiting, and sleeping pain. Each has its own disposition, and each its own mood to live in. From here, I know which pain is there by the expression on Jeanine’s face and strain in her voice.

Sometimes I will be at home with our sons, and my wife will fall in another room, and we three will look at each other, afraid to breathe, listening for the qualifier – the sound that says what kind of help she will want. A lively curse is better news than a low moan, and both are better than silence. A yell will mean a bone has broken. Our sons are clearly distressed at these moments, and why not? My wife can barely tolerate her condition, this “new self” she must live as. It is left to me to look at all this as perfect in God’s eyes. It is surprisingly difficult work, and requires much more than logic and mettle.

So I have come to see that there is a personality of harm, like it is one of Mars’ family, a neighborhood child. People dealing with harm and pain experience common themes in their lives. They often ask “Why me” or “What have I done?” – self examination, an interrogation. Then there is the contradiction of having to cause harm to stop harm: serum injection, re-breaks, traction, chemotherapy, torture. And here is where therapists find the lair of the soul. Give it up, give over, break the spirit, broken man, victim, bargaining, negotiation, and taking stock – there must be a reason for all adversity, and that reason is completely unknowable. Those harmed must repeatedly account for their condition, like taking lie detector tests to prove their innocence, and here is the submission: to tests, maltreatment, abuse, examination.

The harmer is always “other,” so the unharmed must live within, preserved and whole and uncompromised. The pain is a visitor upon the quiet, the natural condition of the body always adjusting into comfort. So we are all previously aware of adversity, and when it comes, our fighting and submission carries the guilt of complicity.

And since the harmer is other, it is inhuman, similar to the alien abductor, (what do they want?) and the witches experience of a Sabbath (what do they do?) and carries an attractive fascination –like the art of Ann Rice and Steven King that pulls, a glamour that attracts followers, the ghoul groupies, the mail brides of the misunderstood murderers. We don’t see these aliens, these monsters-become-human, until we can project the alien harmer out of ourselves. The sympathizers see first.

So do these aliens, the children of Mars, come from poverty of imagination, of sympathy, of money and resources? The adversary comes from incompletion of self. This is not a shadow working unseen, but an individuating struggle. The so-called “street” where the mob coheres, without articulation, into a reactive violence, is reminiscent of the pre-verbal outbursts from infantilism. In his researches into trials conducted in Europe during the Inquisition, Carlo Ginzburg found that the witch and the werewolf are called out of their night’s sleep to fight adversaries of the society, for the crops or the town, on the side of right, benandante, sometimes in Jesus’ army.

In the same way, the sufferer of chronic pain is molested during rest. The harm becomes a terrorist. Once I heard a story about a woman diagnosed with Lupus, suffering from neuralgia and the attendant fatigue. She takes the wolf (Latin lupus) as a totem into her life, and subsequently experiences a feeling of understanding and control which is soothing and beneficial. She does not experience relief from symptoms and neurological deterioration, but she lives by choice. This is the path of the sympathizer.

Someone harmed trades their energy and ability to focus, their daily life, in a struggle. Possessed of a lupine figure, or any interior terror, the trade they make changes that daily life until it grows into something no longer their own. They regain and strengthen their soul through the experience of harm.

What is remarkably unenlightening is that this struggle does not dissipate. So the recovery of my wife’s soul through harm is sometimes disguised as transcendent reclusion, or spiritual interiority. Sometimes there is remarkable bitterness, anger, insult, what James Hillman has called, “dwelling in the low places.” Sometimes there is a burst, almost leaping, into action when Jeanine’s joints unlock. These new ways of being choose Jeanine. There is not one better or best way of living in chronic pain.

Remaining connected to her life is the one objective. Claiming her soul is a method of communication, and my family requires the information. The life of the world chooses us, too.

Edward, there are no words. Except...I'm so sorry. Sometimes, like now, I want so badly to stand face to face with whatever God may exist and scream at him, or her, or it:

"You stupid fucking asshole! You allow so much pain and suffering and misery and depression. Do something about it! If you can't, then you're not God. Get off the throne. Better to leave it empty than have it occupied by a pretender."

Your wife and you are so strong. Not always, I'm sure. Still, your story impresses with its humanity in the face of inhumane pain. I only hope I can be as courageous if the need arises.

Thank you Brian. Your sympathy is grace itself.
I think that I wanted to share the story to bring out the clarity of your friends letter. Yes, the authorities can describe the model from study, and we have the benefit of the insight, which I respect. Then, there is also the rubber out here, hitting the road.

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