Sarah Savasky has been a long-term member of Laura’s Friday morning feedback class. She has won awards for her writing (often in the humor department) and is currently working on a novel about a protagonist coping with chronic illness. We all love Sarah’s protagonist, Amy, and the dilemmas she faces. This piece is an excerpt of her novel in progress–Laura
Amy has one foot in a sensible shoe and one foot in a stiletto. This makes it difficult for her to move forward, or in any direction for that matter. She is walking a fine line: trying to grasp the subtle difference between resignation and acceptance, self-compassion and self-pity. She has heard that the journey is more important than the destination but, so far, this has not been her experience.
Today, Amy is trying to make up her mind about going to a support group for people with chronic illness. She’s still recovering from yesterday’s doctor’s appointment and last night’s sleeping pill. And then there are the voices in her head; the two sides to every story she tells herself. Part of her wants to be with others who understand and part of her dreads it. Amy and Michael, her therapist, have talked about this; the fear she has of over-identifying with her illness. She doesn’t want to be one of “those” people. Amy doesn’t want to be a victim. This is where acceptance and compassion come in; this is also where resignation and pity live. So far Amy has given herself two choices: over identify with her illness, or pretend that she doesn’t have one.
This is also why Amy has trouble asking for help. She doesn’t want to be a burden to anyone. Amy tries to save it all for Michael. He can take it. He’s getting paid to take it. And Michael has a way of making her feel special without making her feel pathetic. He’s an expert at walking the line. He encouraged her to go to the support group, just to check it out. He reminded her that she doesn’t have to go back. He told her she can even leave in the middle if she wants. Amy is thinking at the very least, going will make for good conversation, later, with Michael. And so she decides to go. Amy calls her husband, Steve, at the restaurant to let him know where she’ll be. He says he thinks it’s a good idea. Amy takes this to mean that he thinks it’s better if she talks to other people about her problems. Amy makes a lot of assumptions about what Steve means.
The support group meets at a local doctor’s office. Amy is early but there are already ten other people there, sitting in chairs that form a circle. One of the perks of having a chronic illness is that you don’t really have anywhere else to be. And chronically ill people seem exceptionally eager to talk about themselves. The best she can hope for is a good facilitator. It has to be someone who’s not afraid to keep things on track and cut people off. Amy doesn’t do well with monopolizers.
As soon as the empty chairs are filled, Lorraine, the facilitator, introduces herself and says that she is going to lead the group in a visualization to help everyone relax and “get present.” Amy immediately tenses up and “gets annoyed.”
“Notice the sensations in your body,” Lorraine says, gently. “Hear the noises around you and in your body. Hear the symphony.”
“Listen to the symphony,” Amy repeats silently. Then she wonders what the opposite of a symphony is; because that would be what she’s hearing right now. A cacophony is more like it. Every part of her body makes itself known: Pay attention to me, her head throbs. Listen to me, her stomach cries. I hurt; I ache, her legs and back scream at the same time. I can’t breathe, her lungs whisper. Trying to change the subject, Amy thinks of the bumper sticker that says visualize whirled peas, and she does. But her thoughts are interrupted.
“Don’t judge, just notice,” the nice lady says again, softly to the circle.
Just notice how fucked up you are, the not so nice lady in Amy’s head says. “No judgment. No problem. Just notice.” Amy notices that she is fucked up. It’s not good or bad to be fucked up, she tells herself. It just IS. Amy is trying to convince herself but immediately she has the thought, Isn’t it a little better not to be fucked up? I mean if we could choose we would all choose not to be fucked up, right?
“Slowly come back to the room”, Lorraine continues.
This is easy for Amy, since she never left the room. She opens her eyes and has no trouble adjusting to the lights or the sounds. Still somehow, Amy feels slightly more peaceful than when she started, she thinks about the feeling and makes a judgment. She decides it’s a good feeling.
But then people start sharing, and Amy wants to run. A middle age women in a long, faded dress and hiking boots is talking about the politics of lyme disease. She wants everyone to sign a letter she has written to the state senator. The woman rants about the doctors who won’t treat and the insurance companies who won’t pay for treatment. Amy empathizes with her, but she doesn’t want to listen to her; Amy doesn’t want to be a member of her group.
Amy wants to be in a book club, or a quilting circle, any club but this one. A very large woman is falling asleep in her chair, she almost falls off the chair several times but jerks awake just in time. No one else seems to notice. It’s like being at the beach with a mother who isn’t watching her kids while they play in the rip current. In these situations, Amy always feels like it’s her job to make sure nothing happens. It’s the perfect landing place for Amy’s free-floating anxiety. The upside of the situation is that it keeps her from paying close attention to the man who is talking about the ins and outs of his digestive system.
Amy knows that many people are here because of chronic lyme disease. There are very few doctors, even in this open-minded town, who believe that chronic lyme disease is real. This is one of the things that makes people who suffer from it feel so marginalized.
Chronic lyme disease was one of the first diagnoses Amy received. She took antibiotics for three years to try to get rid of those disgusting spirochetes that had supposedly been hiding out somewhere inside her. Amy had swallowed a lot of pills and endured painful weekly injections of antibiotics in her butt. Then there was the clinic in Boston where she spent two weeks getting daily intravenous treatments that were meant to remove toxins from her cells.
Amy tried extreme diets and spent thousands of dollars on supplements. But the clinic was the last straw. It had been traumatic really. It was there that Amy began to understand the fine line between feeling validated and feeling deeply fucked up. The doctor at the clinic had been so kind, so understanding, as she went over Amy’s test results with her. “No wonder, you feel so bad, sweetie,” she said. “You are very sick. It’s not just lyme disease. Your cells are filled with toxins that are making you exhausted and causing a lot of pain. You are not crazy, you are sick.” All Amy could do was sob. At the time she thought it was relief. Someone, a doctor, was telling her it wasn’t all in her head. But later on she realized that she was sobbing because she felt sad and overwhelmed and hopeless.
Amy came home from the clinic and took the massive amounts of supplements the doctor had prescribed and drank disgusting drinks and ate nothing but protein and fat for six months. And at the end of all that, nothing has changed except she weighed more and had less money and less hope than when she started. Amy has promised herself that she will never do anything that extreme again. Now Amy is trying to focus less on what’s causing her pain and more on how she can alleviate it. According to Michael, she has to start with accepting where she is.
Right now Amy is in a room with fifteen other people who are also trying to find a way to live with chronic illness. Unfortunately for Amy, she finds other people’s coping mechanisms extremely annoying. But she tries to give them the benefit of the doubt.
Amy silently repeats the mantra Michael taught her about compassion, hoping it will help her be more patient. May I be kind. May I be aware of my own suffering. May I be open to my own suffering. May I respond to my own suffering with love and compassion. “They are doing the best they can,” she reminds herself. “You on the other hand are not,” she says harshly.
Sarah Savasky received the first place humor prize (2011) from the Soul Making Literary Competition, for her essay, Dog People; the Best Narrative Voice Award (2009) from the International Golden Key Honour Society, for her essay, This is My Brain Off Drugs; and an honorable mention humor prize (2007) for her essay, Take Two Anti-Psychotics and Call Me in the Morning. She is currently writing a novel. She also writes about the joys of being gluten-free, with her friend, Enid, at glutenfreebitches.com.