Bad zebras

The day I learned about zebras for the first time I’d already had a bad day. Jane was in a coma. Her doctors had told me there was nothing we could do but let her go. She’d woken up, briefly, about 6 p.m. I’d told her we would take her off life support in the morning.

It’s the disease that is the zebra…

I hadn’t eaten all day and the nurses knew I probably would not eat the next day. They’d sent me to the cafeteria for dinner. I ran into her heart surgeon on my way back to her room.

‘Think horses not zebras’

“We teach young doctors a saying,” he told me after we went through the ritual greetings between doctor and spouse when both know nothing remains but waiting for death: “‘When you hear hoofbeats, think horses, not zebras.’ It reminds them to look for the most likely cause of a symptom rather than something rare.

Jane was in a coma.

“But sometimes,” he continued, “It really is a zebra. A zebra killed your wife.” We talked for a few minutes more. He tried to console me, knowing no words will ease such a loss, but knowing he had to try anyway. He was a good person.

Remembering the end

I don’t remember much of the rest of that night. I remember every minute of the next day in exquisite detail. I remember reading to Jane, singing to her, talking to her, holding her hand and catching her last breath in a final kiss. I remember the phone calls. I remember how numb I felt–and how numb I stayed for months–maybe years–afterward.

‘A zebra killed your wife.’

Someone asked online this weekend how people in the NET cancer community felt about being called zebras. I didn’t respond to that post because I didn’t want to hijack the conversation. I dislike the term–and have from the start. But my reasons are complicated and not easily reduced to a few sentences without context.

Zebras and lies

In one sense, a zebra didn’t kill my wife. Rather, it tortured her. It kicked her slowly to death over a period of decades. She was sick the day we met, sick on our first date, sick on our wedding day, sick on our honeymoon, sick on every vacation–sick every day of our lives together.

I remember holding her hand… 

A zebra didn’t kill my wife, ignorance did. None of her doctors knew enough to diagnose her until she was all but in the grave. They remembered the adage they’d been taught. They forgot zebras have hooves that make a distinctive sound.

Zebras and neglect

Jane died of “benign neglect.” She died because we, as a nation, decided making war was more important than curing diseases that only afflict a hundred-thousand people at a time.

A zebra didn’t kill my wife…

And that’s not a zebra–that’s criminal negligence none of us can do anything about because we can’t sue politicians–and won’t replace them with people who actually care.

Zebras create illusions

I hate the medical use of the word “zebra” because it lets us hide behind the cute image of a largely harmless creature that only becomes vicious when we get too close to it. And if we don’t get too close to it we never see what it really is and how much suffering it really causes.

Jane died of ‘benign neglect.’

Telling me a zebra killed my wife may have consoled her doctor. It did help me understand what had happened and why no one had caught it. But I was not consoled by those words. They did not make watching Jane die any easier.

Zebras steal our humanity

Our community’s use of the term also rankles me because it dehumanizes patients and what they go through. Patients are not a herd of animals.

…I was not consoled…

They are individual human beings suffering through a disease that cripples them socially and emotionally, as well as physically. They have families who stay up with them through the insomnia, search for public bathrooms with them in the face of impending diarrhea, and hold their hands while they are dying.

Stealing from other zebras

And we’ve appropriated a term for our use that belongs not only to NET cancer, but to literally dozens of other cancers and hundreds of other diseases. A zebra killed my wife, but different zebras crippled a very dear friend and the daughter of another, while two others struggle with the impact of a fourth and three other zebras have killed people I cared about.

Patients are not a herd of animals.

Sometimes–and understandably–our zeal to destroy NET cancer causes us to forget those other, equally devastating, zebras around us.

My zebra guilt

Of course, I’m as guilty as anyone of misusing and exploiting the term. The zebra has all kinds of marketing potential and I’ve used it shamelessly, despite my misgivings. We walk with our zebra banners and sell our zebra-themed merchandise at craft fairs and other events.

…we’ve appropriated a term…

People like our Walking with Jane logo but they don’t line up to buy items emblazoned with it. It works on this website and on our letterhead, but no one is going to hang it on their Christmas tree. I get it. Cute animals sell.

People are not their diseases

But it’s the disease that is the zebra–not the people who have it. Anything that lets anyone forget the human faces of those who have the disease gets in the way. NET cancer patients are not cute animals with stripes. Nor are the other patients dealing with zebra diseases.

I get it.

We need to put human faces on NET cancer so the outside world never forgets the human suffering involved. We need to do that with every disease doctors label a zebra.