Saturday, October 17, 2009

Dealing with Bad News


We have found that humor is the best cure for bad news. When we realized that I was not going to survive many more years, our jokes became more gruesome. Friends and relatives are now used to it but I would sometimes forget if another person was around. At a friend’s house, Michael and I were teasing each other and I said, “This from a man who is going to pull my plug! If this continues, he might pull it early!!” We all laughed expect the poor person not used to our talk who suddenly turned pale.

When the news was really bad, I found that nature was the way to work through my emotions and put things into prospective. We live along the ocean. Many hours have been spent with the top down and the heaters on in the car for long drives along the ocean, into the hills surrounded by mammoth redwood trees and deep forests. During these drives, we talked. Often we were just silent enjoying the splendor of nature with our favorite music playing softly. These drives allowed me to gather my strength.

We were dealing with: drug side effects, long-term disability insurance company and lawyer, Workmen’s Comp lawsuit and lawyer, loss of income, chronic illness, endless paperwork, good tests, bad tests, surgeries, acid reflux due to the drugs, Social Security Disability Insurance, my bed-ridden aunt (I visited every week and was in charge of her finances), not feeling well, helping the person who took my place at the school, adjusting to rehab everyday, and exhaustion.

In September 2006, Dr. K. first mentioned the possibility of lung transplants. It was a shock to both of us. She said that only 50% are alive after 5 years post transplant. It is not about extending life but about quality of life. If you are sitting on a couch needing 10 liters of oxygen just to survive, that is not living. You are willing to take a chance of dying on the table for maybe another few years. It is the least successful of all the transplants.

We stumbled out of her office and began the long walk to the car. Michael asked, “Where do they get the lungs?” “Where do you think?” I replied. “Dead people?” he asked. A minute of silence. “So, if you get a man’s lungs, are you going to pee standing up?” he asked with a grin. “Certainly!” I replied. It went down hill from there and we were roaring with laughter when we got to the car. Somehow, the thought of transplants has not been so daunting since then.

Finally, I believe that we all have a choice on how we leave this world. I do not want my family to say, “Thank heavens she’s dead. She was so miserable these past few years.” I want them to say, “She stayed positive and active until the very end.” Death is going to have to chase me because I am not going to sit around and wait for it. I want to leave with dignity and grace.

Next: Rehab

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