What Does It Mean to Be Terminally Ill?

Each month Kathleen Clohessy offers a new perspective on living with a terminal illness. With 25 years experience caring for families and children facing life-threatening illness, she uses her extensive personal knowledge and expertise to enlighten our readers regarding the challenges associated with chronic illness.

Credit: niophoto.photoshelter.com

“Everything that’s born has to die” ~ Jonathan Safran Foer

From the moment we are born until we close our eyes for the last time, we walk hand in hand with death. Because we are human, we deny this truth as a matter of course, living our lives as if dying is something that only happens to someone else. We weave stories about the future and, all too often, put our “real lives” on hold until we have time to live the way we want to live.

Then one day, something happens that catches us off guard. We find a lump. We can’t catch our breath. We forget, for the third time, where we parked the car.

At first, we tell ourselves it’s nothing to worry about, but sooner or later fear gets the best of us, and we do what we have to do. There are tests and more tests — prayers and tears and agonizingly long waits for results. Yet, when the answer we’ve been waiting for finally arrives, it seems too sudden, too cold and too heartless to bear. Life as it once existed is over in the time it takes to hear the news.

“You have a terminal illness.”

Credit: wallpapertags.com

And suddenly, the only thing we can think is, “How do I go on living when I know I am going to die?”

In 21st century America, terminal illness does not mean quite the same thing it meant even 20 years ago. In 2014, 64 percent of all Americans who received a cancer diagnosis survived at least 5 years, and 15 percent survived for 20 years or more. By 2024, the American Cancer Society estimates that there will be nearly 19 million cancer survivors, people who have lived with a cancer diagnosis for 5 years or more, in the United States.

Modern medicine has made great strides in treating other terminal illnesses as well. Cardiac surgery and new medical technologies now prolong the lives of many who would have died quickly from various forms of heart disease 30 years ago, and organ transplants have added years to the lives of people who live with severe lung, liver and kidney disease. New medicines are changing the face of dementia, diabetes, COPD, HIV and AIDS.

What this means for many of us is that death, even from a “terminal illness,” is neither sudden nor swift. Today, a terminal diagnosis often comes with the hope of a much longer life than we thought we could expect. Unfortunately, that hope often comes at an enormous cost.

“They never told me it would be this bad.”

Zach, a cancer patient receiving radiation therapy for multiple myeloma that has invaded the bones in his chest and spine, sums up that cost succinctly when he says, “They never told me it would be this bad.” Dealing with the fear, anger and sense of helplessness he felt when he received his diagnosis was terribly difficult, he explains, but it was child’s play compared to the treatment he has had to endure. “Just a little radiation for two weeks,” the doctor said, as he had undoubtedly said to many patients before. The side effects, he assured Zach, would be minimal—a small price to pay for staying alive.

But the side effects seemed far from minimal to Zach, who, at 50, had never been seriously ill in his life. Mouth sores, excruciating pain, nausea, diarrhea and overwhelming fatigue were his constant companions, not for two weeks but for nearly two months. Frightened and exhausted, he thought to himself more than once, “If this is how it’s going to be, I don’t think I can go on.”

Credit: wallpapercraft.com

Nor is Zach’s experience unusual. The words “You have a terminal illness” create shockwaves that penetrate to the core of our beliefs about who we are and what our lives were meant to be. The veneer of denial that shields us from the knowledge of our essential impermanence falls away in an instant, so that we see the truth that has always been there—that the life we treasure may soon be gone. We think of all that we will lose and the suffering our death will cause the people we love. And suddenly, nothing—absolutely nothing—matters more than staying alive.

Unfortunately, that single-minded focus soon falls away as the reality of living with a terminal illness becomes all too clear. Like Zach, many people begin to question the wisdom of pursuing treatment at all. They become tired and disillusioned by pain, fear and loss. Financial pressures mount. Relationships erode. Friends, unsure of how to respond, drift away.

Yet, somehow, the vast majority of people living with terminal illness find a way to carry on. Some turn to laughter, others to spirituality. Some find meaning in service; others pour themselves into work. But like Zach, who has now recovered from the effects of his radiation and just completed his first six months of chemotherapy, they all seem to share a common bond – the ability to accept, however reluctantly, the hand they have been dealt.

“My happiness grows in direct proportion to my acceptance, and in inverse proportion to my expectations. Acceptance is the key to everything. “–Michael J. Fox