Living with an illness for which there is no cure

For the past fifteen years, I have had an incurable form of leukemia.

Such diseases used to be called terminal illnesses, but we don’t hear that term as much anymore. With all the new drugs and treatments available, doctors have become more reluctant to refer to diseases they can’t cure yet as “terminal.”

In the years just after my diagnosis, when friends and family would ask what could be done for it, I used to say that nothing could be done, adding: “It’s terminal.”

I was trying to be honest, to say, “Come now, we must face this.” People’s reactions of shock and sadness, though, made me wish I’d put it some other way. But what other way?

My father, who’d died of the same form of leukemia at age forty-three, had never known what he had. It was a secret my mother kept from him and from my sister and me–and as with many such family secrets, each of us paid a high price. So I wanted to be all about honesty.

I continued to use those words, yet they never felt quite right. I began to sense that there was a lie in them, and eventually, I realized what it was: aside from bouts of fatigue, I was feeling fine! The looks of pity I was receiving just didn’t match my physical state, and once my initial shock and fear had dissipated, they didn’t fit my emotional state either.

As time passed, I felt more and more of a disconnect between the concept of someone living with a terminal illness and the actual realities of my life. After the first six months, I wasn’t even thinking about my illness all the time, and after more time had passed, I felt and behaved pretty much as I had before being diagnosed. It seemed almost fraudulent to claim to be “terminal”–as if I should wink or make little quotation marks with my fingers when using the word. I began to question why I was telling people about the leukemia at all.

One day a good friend came right out and asked me how it was to live with the knowledge that I was going to die.

I took the question seriously and prepared to explain as best I could. What came out instead was something like: “Well, you know, I live with it pretty much the same way you do.”

She seemed genuinely taken aback. After frowning thoughtfully for a moment, she said, “That’s true”–but without much conviction. Neither of us knew what to say next.

What I’d realized just before speaking was this: we all know that we’re going to die, and yet we make our breakfast every morning, shop for curtains, go on trips, write poems, get married, see the dentist, attend our children’s school plays and so forth. We don’t focus on our death all the time. It isn’t natural to do so–not because we’d be sad and frightened all the time but because it’s not in our nature.

What’s natural to do is to live. Other kinds of creatures know perfectly well about death and will go to great lengths to avoid it, but when they’re not busy avoiding it, they carry out their normal routines, living their lives. Humans facing the possibility of death up close for a significant chunk of time, as during wars or living in places near volcanos or earthquakes, etc., will find a level of normalcy that allows them to go about their business. The life force will assert itself.

The truth about having an illness for which there is no cure is that you’re not dying of it most of the time. Dying is a very particular state in which the body is clearly losing or has lost the battle with the forces breaking it down. Most of the time, I’m not much sicker than people with a mild cold. When my disease waxes and I become more sick, I’m still far from dying, even if I look like a frog with mumps.

I did come close to death, before my last treatment a few years ago. Some nodes inside my abdomen had become large enough so that both my breathing and elimination were in a spot of trouble. Without doubt, I felt much more authentic!

But once I began treatment, the situation abated, and once more I felt fine. As with the memory of pain, I hardly recall those few weeks, and now again I’m no more dying than you or you or you.

Lately, if I have to describe my disease to someone other than a nurse or doctor, I’ve been saying that it’s a chronic form of leukemia that can be treated for years. I remind people that I’ve lived a full life for almost the entire time since I was diagnosed in 1998.

I no longer need to point out to others that their lives are terminal, too. None of us likes to be reminded about that. Not even me.

Ellen Diamond holds degrees in counseling and social work. Her father died of CLL at age forty-three, and another close relative is now facing treatment for it.  This piece was originally published in Pulse — voices from the heart of medicine, and is reprinted with permission. 

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