I Don’t Know

I-Dont-KnowOn the weekly list of hospice patients and their myriad illnesses, one disease seemed to stare back at me . . . Idiopathic pulmonary fibrosis.

What was it? I’d never heard or read about this illness.

Later, I scoured the Internet and found this description from the Cleveland Clinic’s website:

The cause of IPF is unknown. In some patients the disease is genetic (you inherited the disease from your parents). Environmental factors (particularly exposure to certain types of dusts) may also play a role. What is known is that IPF changes the lung’s ability to function normally. Typically, mild scarring of the lung tissue occurs first, but over months to years, the normal lung tissue is replaced by more heavily scarred lung tissue, which makes it difficult to breathe and deliver needed oxygen to the body.

After reading, I took a deep breath. Lungs. Air. Life. Breathe in. Breathe out. The simplest of actions that humans do—breathing—would be compromised by IPF. I thought of sci-fi movies where the desperate quest for another planet compatible to human life usually included the question: “Does it have oxygen?” On the original Star Trek, Kirk and Spock were often beamed to strange new worlds where they’d battle nasty creatures, solve vexing problems threatening to destroy the remnants of a civilization, and with Kirk inevitably falling in lust with a human-like (and scantily clad) female alien. But the Enterprise crew never donned cumbersome spacesuits since those visits were to places with fresh air.

With the lungs compromised, a patient may feel like they are (barely) surviving on another planet. While Hollywood may elevate that sci-fi scenario into a thrilling and/or romantic adventure, the lack of oxygen is a literal death sentence.

How do you get IPF?

“The cause,” the Cleveland Clinic stated, was “unknown.”

Idiopathic pulmonary fibrosis. A scary disease becomes even scarier.

Though I studied the ancient Greek language years ago, I’ve forgotten most of it and scanned a dictionary for the origin of idiopathic. That single medical word was derived from two Greek words: idios, or “one’s own” . . . and pathos, or “suffering.” One’s own suffering. A suffering that is unique to an individual; a suffering in which the original cause cannot be determined.

What’s wrong with me, Doctor? We don’t know. A scary disease has a scary answer.

Of course, it’s not just with lung diseases where this awful I-don’t-know answer slaps us in the face. I’ve spent time with anguished families because a loved one committed suicide. When a person takes their own life, his or her reasons often die with them. Families are left behind, second-guessing the past, feeling helpless and guilty in the present.

After months of complaining about eating concerns and constipation that never seemed to go away, my mother was diagnosed with cancer.

“What kind of cancer?” my sisters and I demanded of several doctors.

Their answers invariably circled back to, “I don’t know.”

Whatever cancer it was, and wherever it had begun, Mom’s body had become quickly riddled with the disease. Its origin could not be determined . . .

One’s own suffering.

proxyIn life and death, there is much we’ll never know. Though we claim to live in an advanced civilization on a planet rotating around a specific sun in a particular solar system within a minor spiraling “arm” of the Milky Way called the Orion Spur, there are situations that always make us feel like aliens. With apologies to Star Trek, if we’re scantily clad, it’s from wearing a hospital gown. Regardless of what is worn, we feel naked, vulnerable, and frightened.

Sometimes, literally, we can’t breathe because of a disease’s relentless process. Sometimes, also literally, we can barely breathe because of a loved one’s fatal illness. We feel lost in places as normal as home and as alien as a doctor’s office. We resent and resist the I-don’t-knows, but that may be the only honest answer. However, when the worst happens, I try to ask myself a question in this strange galaxy of dying, death, and grief: what do I know?

If I don’t know what caused an illness, and if no physician can tell my loved one or me how it started or what the “cure” could be, what knowledge remains?

I can make every effort to not let a beloved suffer alone.

I can voice my anger or fears and also share in whatever best this day brings.

I can seek or receive forgiveness.

I can offer a hand.

I can openly weep.

Breathe in. Breathe out. Express your love. Today.

(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)

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