The Notepad – NPR Perspective

The doctor looked at my wife’s notebook. The doctor said that when she sees a notebook like that, she knows she’s dealing with a neurotic patient – the kind of patient who reads too much on the Internet.

The doctor then talked to my wife about her illness, pausing now and again to allow my wife’s note-taking to catch up.
I appreciated the doctor’s polite pauses but, this was the wrong doctor. This doctor saw my wife in her notebook, but she had no idea what she was looking at.

My wife’s health began to fail when she was in her early twenties. Over a period of five years, she went from doctor to doctor, and from diagnosis to diagnosis. She was told that she had allergies, that she had autoimmune disease, that she was normal, that she should be on steroids, that it was all in her head.

Meanwhile, she steadily grew worse.

Having an undiagnosed chronic illness is like being perched on top of Mt. Everest – you’re still on the planet, but you’re not well-moored. The air doesn’t have enough oxygen in it – you know you have to get back down to a lower elevation if you want to stay alive. Only you don’t know how.

Her notebook is where my wife recorded everything; seemingly unrelated symptoms, meetings with doctors, therapies and medications tried.

What ice axes and crampons, down jackets and ropes are to climbers, that notebook was to my wife. It was the tool for her descent back to safety, if she was going to descend at all.

Refusing to give up, my wife met with yet another doctor. She consulted her notebook as she gave her long medical history.

This doctor listened carefully to her lists of strange symptoms, test results and therapies tried.

When she was done, he said he knew what was wrong with her. He said he could help. And he did.

It’s taken years for my wife to slowly climb down from her airless peak, but she has.

A climb she accomplished, clutching her notebook.