Monday, May 20, 2013

rules to live by

There is a boy. He sits in a room, surrounded by adults, in a circle of adults. He speaks calm words about himself, about the last three years of his life, about this thing they call chronic daily headaches, about the pain and its beats and measures. He is not calm, but you wouldn't know it. She knows, because later he tells her.

There is a woman, his mother. She is silent, allowing him to speak. She shifts in her chair, and her jeans make an embarrassing noise on the vinyl. She hopes no one heard. She knows they probably did, this room full of attentive adults. She crosses her legs. She crosses them the other way. She listens. She waits her turn.

There are six other adults in the room, four women, two men, members of the chronic pain management team. Twelve eyes to look at the boy and his mother, twelve eyes and three hours of questions. Six different breeds of medical professional: male, female, old, young, serious, kind. They are all kind, so kind. She feels pinned by their gaze.

They ask the boy questions about the pain, how often, since when, what sets it off, what helps, where it is, how it feels. Mostly he can answer them (he's heard them before). Sometimes he can't. The questions have beaten him into silence, too many questions. How can he quantify the pain? How can he put a number to it? What if he is wrong? He has started to ask himself, what if he is a coward, when others experience far worse pain than this?

The boy wears soft grey pants and a grey jumper with a fur-lined hood. The soft edges protect him from the hard edges of their questions. As they walk to the meeting, he pulls the hood up, but his mother pulls it down. He runs his hand through his hair, and she smooths it down.

They notice this. They notice everything. They ask if he likes soft clothes. He does. His mother listens, fascinated, but she wonders what this has to do with anything. She wonders what anything has to do with anything. What are they observing about him, about her? What connections are they drawing? What are they thinking? Why won't they tell her?

They take him from the room. Two adults gone, four left plus her. They question her. They ask about his developmental milestones, relationships, intelligence, family history. Some answers she knows (she's familiar with this line of questioning). Some answers she can't remember (she should have brought his baby book). She asks herself, Why can't I remember? Why don't I know? Does it matter that I don't know?

More questions. What are his thought processes like? Positive or negative? You say positive? But what about these times? What about those? She knows, she doesn't know. She says to ask him.

He returns to the room. They ask him. He answers, or tries to answer. She marvels at the delicate balance of mind and body, so finely tuned, so easily knocked awry. Has she done this? Did they do something wrong, or not do something right? This beautiful, strong, loving boy. What have they done?

The boy and his mother are sent away for fifteen minutes, fifteen minutes of buying him a sausage roll, sitting in the sun, exclaiming at the spinning doors, wondering what conversations are happening in their absence. They return.

And they are told that they are doing okay. They are doing the right things. The doctors they are already seeing - those doctors with all their questions - are doing the right things. Maybe they could change his medication. They should probably bring him back for some physiotherapy. Oh, and there's a pain clinic he could attend. And some more questionnaires to fill in. And the occupational therapist would like to see him. The boy's mother adds the appointments to a diary full of doctors' visits. But, they say, you are doing well. We approve.

She feels relieved. The boy smiles, shifts in his chair. And it's all okay. And none of it is okay.

There is an art to this, an art she has not yet learned. To allow their lives to be examined, probed, dissected, cut open like a rat on the table. To remain undefensive, receptive. To be grateful, to listen and absorb. To know this matters immensely, could mean the difference between health and sickness. To know this doesn't always matter, the doctors don't always know, don't always agree, aren't always right.

To try things, all the time not knowing. To work away at the pain, increment by imperceptible increment, week by week. To make mistakes and pay the price of days of illness and, next week, try something new and lose more days and try again, each time one step closer. To watch her son suffer, watch him make progress, so much progress, but still so slow, so far to go.

To follow the rules, all the times ignoring the rules. To answer the questions but not allow them to strip her bare. To hear conflicting advice and know when to listen and when to ignore. To be full of needs, but not to be needy. To ask for help, yet go home and cope on their own. To do all this and not be swallowed up by it.

To get on with life. To love her son. To find the energy, somehow, to love her other three children. To be tired but not to lose her temper. To lose her temper, ask forgiveness, and not wallow but go on. To turn from tears to laughter, to learn the art of turning from tears to laughter. To be worn out, to be worn down, but to go on.

She has always been a rule-follower. She feels secure when she obeys. She needs to get it right, to get everything right. She needs to please. She is learning that this is not possible, that she can't do everything they say. That she can't do everything. That sometimes - often! - she won't know the best thing to do. That all she can do is what is best for her son, for her family, and love, and serve, and try, and love. She is learning that there is only One she lives to please, and she is already whole and loved in him.

She doesn't have the strength for this, but she knows Someone who does.

I wrote this in response to Meredith's writing challenge


Jane Lister said...

Beautiful, insightful, helpful words Jean x

Meredith said...

This is sad and beautiful. Thank you for sharing this with us. It is a long road. Prov 2:5,6