Hospice and the Unknown

UnknownOn the weekly list of hospice patients and their myriad illnesses, one disease seemed to glare back at me: Idiopathic pulmonary fibrosis.

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

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

In IPF, lung tissue becomes scarred and changes the lung’s ability to function normally. The scarring typically starts at the edges of the lungs and advances towards the center of the lungs. Typically, mild scarring 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. Unfortunately, IPF is a disabling disease without a known cure and with few treatment options. The cause of IPF is unknown . . . [Italics added by me.]

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.

No spacesuit for Captain Kirk . . .

I thought of sci-fi movies where the desperate quest for another planet compatible to human life often included the question: “Does it have oxygen?” On the original Star Trek, Kirk and Spock were frequently beamed to strange new worlds where they’d battle nasty creatures and solve vexing problems threatening to destroy the remnants of a civilization. Kirk inevitably fell in lust with a human-like (and scantily clad) female alien. But the Enterprise crew never donned cumbersome spacesuits since those visits were to strange lands with familiar fresh air.

If the lungs become 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 died by 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 an anguished variation of, “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.

In 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, our mortality makes us feel naked, vulnerable, and frightened.

Sometimes, literally, patients can’t breathe because of a disease’s relentless process. Sometimes, also literally, friends and family can barely breathe because of a loved one’s lethal disease. We feel helpless. We resent and resist the I-don’t-knows, but that may be the only honest answer for what ails and assails us. 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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