I heard about it on a news radio program. Fernweh. It is a German word, quite unique and without an exact translation; but it roughly translates as having a longing for a place you have never been. As opposed to homesickness, which is to miss the place you came from, this is about missing a place where you have not been. Nearly the opposite of déjà vu, which is to have a feeling of having been somewhere before; in this case, it is a sense of belonging somewhere you have never been. The longing comes from realizing you will never get there. The literal translation of fernweh is farsickness, having almost gotten to a place and missing it.
Most of our patients surely must experience this feeling. Their diagnosis means they will never get to where they’d thought they would. The place they always assumed they would go to is suddenly altered. Whether it was a plan for what life would look like in retirement, future travel, the luxury of good health, or other concrete longings — eg, seeing children grow up, walking a daughter down the aisle, holding a first grandchild. The future is challenged and changed by their diagnosis. And profound grief accompanies that realization. If only, what if, I want a do over.
In a family meeting I was in just today, our physician asked Joe, a patient with an advanced lung cancer, what he understood about his disease. His response was simple and blunt. “I understand that I’m screwed. That there is no way out of this.” He was silent for a moment before adding, “I feel like I’ve been locked away in prison even though I did nothing wrong. And they threw the key away, and there is nothing for me to do.” He paused then, “I had so many plans.” That, I believe, is fernweh.
The next thing that happened was not unusual. His sister shook her head and said, “Don’t say that. It’s not true. There is always a chance, a miracle, or a new chemo.” He didn’t respond, neither agreeing nor disagreeing. He looked at her without malice or anger, but with a detached kind of disbelief. If he could acknowledge what he knew was true why couldn’t she? This is not uncommon, someone close tries to convince the patient that they can’t give up. All they need do is stay strong, physically and mentally, and to fight.
Sometimes we caregivers may do something similar. Our own discomfort can be a barrier. Do I want to be the one to agree that, as my patient said, he is screwed? We worry about taking hope away, and we say what we know is not true, albeit a modified version. We say what we are more comfortable saying. We may even try to convince them not to long for what they will miss, and instead to be grateful for what they have. Which is true and vital. But the altered future is not what they had imagined.
If you ask most people how they would like to die, they have a picture of peacefully dying in their sleep. If you ask how they envision their life prediagnosis, it is wide open, an endless road with a shimmering horizon. But after the diagnosis, the shimmering horizon turns out to be a mirage, the desert heat tricking their minds. What they want is what they thought they had coming.