Jimmy Menkhaus, 42, was diagnosed with cystic fibrosis at birth and believed for years that he’d die in his mid-30s. (Photos by Sarah Rice for The Free Press)

The Unbearable Burden of Being

After a miracle drug unexpectedly saved Jimmy Menkaus’s life, he has no idea how to live it.

Jimmy Menkhaus was 15 when he first learned he’d be dead by his mid-30s.

It was a cold morning in Cincinnati on March 4, 1996, and his dad, Ed, was driving him in their brown Chevy Silverado to St. Xavier, a Jesuit high school where Jimmy was a freshman. Jimmy was reading aloud an article in the school paper, The Blueprint, about a chemistry teacher named Andrew Leudeke who was fighting for his life. 

Just like Jimmy, Leudeke had cystic fibrosis. CF, as patients often call it, is an inherited disorder affecting 30,000 Americans that damages the lungs and digestive tract, producing a thick mucus that gradually overtakes the breathing passages and suffocates people with the disease.

Jimmy was fascinated. At the time, he knew very little about the disease. None of his family or friends had it. There was no internet to speak of. He had his inhalers, medical vest, compressor, and medications—all of which were supposed to help clear away the mucus gradually enveloping his lungs—but no one ever told him how long he could expect to go on like this. His parents, he later learned, thought it better not to burden him with that.

Now, the article in his hands was telling him it was a miracle that Leudeke was still alive at 35. It said he should have died ten years ago, and it went on to state he would almost definitely be gone soon.

Stunned, Jimmy stopped reading and put the paper down.

“That means I have lived half my life,” he told his dad. 

Jimmy looked over at his dad, who was now in tears. 

“You never know,” his dad said quietly.

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