Worth the Ride

At that moment the door swung open and the doctor entered the room, the nurse practitioner and the pulmonary clinic social worker behind him. He wasted no time. “Joshua, I’ve always been honest with you because you’re not a child,” he said in his distinctive Israeli accent, “It isn’t easy for me to say this because I know you have tried hard. And I have tried to wait as long as possible, but now is not the time to wait anymore.” My respiratory and nutritional status was at a critical point and required a major intervention. I needed a tracheostomy and use of a ventilator at least part of the time. For a few hours of the day, I would likely be able to come off the machine and breathe on my own or “sprint.” To address my poor nutrition, I also needed a feeding tube placed directly into the stomach (commonly known as a “g-tube”) which would allow me to receive much more nutrition than eating by mouth. If I waited even a few months, I would be unlikely to live for more than a very short time. By acting now, I could live another five, six, or more years with a relatively good quality of life, according to the doctor. It was a shock to hear my life expectancy discussed. Although I was certainly aware of the reality, no doctor had ever discussed it with me before. Of course, I had been doing well for so long that it had not been much of an issue. For the first time in my life, my disease had become life-threatening. Wow. We’ve reached that point. “It’s not a perfect solution,” said the doctor, “but it’s the best that modern medicine has to offer, and I strongly recommend that we take advantage of it.” My parents, sitting to my right listened with concern but said nothing. I dared not look at them for more than a second, fearing I would get choked up. I needed to be strong for them and to remind myself that I was a mature adult who could handle bad news. But as I tried to speak, tears began to well up in my eyes. All I could do was nod in agreement, telling the doctor, “I agree... I agree.” After a few seconds, I was able to venture a bit further. “I’ve actually heard some people say that [a tracheostomy] was the best thing to happen to them, that they were able to become more independent.” Whether this was directed at the doctor or my parents, I was trying to think of something positive to say. Otherwise, I might have been completely overcome by my emotions. At the same time, I felt validated. Something was seriously wrong with me and there was no way around it. Moreover, I felt a tremendous sense of relief. I had been preparing for this moment for some time, and knew I would eventually need these procedures and would agree to them when the time came. Now that time had arrived. The black cloud hanging over my head had been lifted and I would be able to get used to the way the rest of my life was going to be.