Ugh

It's a fine line I have to negotiate: On one hand I want this site to be positive, focused on the miracle of modern medicine and of the power we have to give of ourselves to the ones we love. I want this site to be a source of courage and hope for others going through similar ordeals. And, of course, I want to protect the privacy and dignity of my family, especially Joe. But on the other hand, I created this site to chronicle my experience as a donor, and this week, the story isn't funny or upbeat. Joe is going to be fine in the long run, the doctors are still saying, but the path to getting there is proving to be frustrating and cruel. So to be true to my mission, I'll tell the story, insofar as it relates to my thoughts and feelings as his donor.

The question "How is your brother?" used to be one of my favorites, because the news was so good. Everyone loves a happy ending, smiles all around, shakes of the head and praise for the marvels of science. Today, I still value the question because it is so precious to know people are thinking and caring about our situation, and frankly, relieving to be invited to talk about it. But it's a much more tiring question to field these days. I don't know how much people want to hear, and no matter what I don't have enough to tell them, because I don't know enough. None of us do, not even Joe's doctors. Joe just keeps plugging away at the little setbacks, and we keep hoping that next time he leaves the hospital, it's the last time he'll have to do so for a while.

When I talked with one of the doctors at NMH about my plans to convert this site into a larger resource for potential and former donors, she cautioned me to be sensitive to donors whose experiences weren't as positive as mine -- donors whose recipients rejected the organs, donors who never got the chance to donate because the recipient didn't make it until or through surgery, donors who have since attended their recipients' funerals, and donors who suffered complications themselves. I imagine how it must feel for them to answer the questions, and two thoughts come to me. First, I'm better able to truly empathize, and second, while it might be hard, we are very, very fortunate. Blessings counted.