17 ~ (November 2003)
Restitution for Wrongs
As it turned out, Karis had another line infection in early November and lost her catheter. The doctors in South Bend wanted her to go to Pittsburgh for placement of a new one, because they were insecure about finding access. I went to the US early in order to take Karis from South Bend to Pittsburgh for the catheter placement the week before the scheduled transplant evaluation.
Shortly after Karis and I arrived in Pittsburgh, we received the heartbreaking news that my youngest sister had been diagnosed with an aggressive cancer. I left Karis in the hospital and took off for New Jersey to be with Karen. When another of our sisters, Jan, heard what was happening, she traveled to Pittsburgh to be with Karis. (Jan lives in Mexico, but was in Illinois at the time.) When I returned to Pittsburgh, and Dave and Dan arrived, Jan decided to stay on for the evaluation and was a wonderful support to all of us.
When Karis first met the transplant team, one of the surgeons made a comment about how good she looked and his sense of surprise that we thought she might need their help. We were quick to say that we certainly didn’t WANT to have to resort to transplant, and would be thrilled to find any other solution.
Later, after Karis submitted to a series of medical exams, Dr. S came back and apologized to us. He said that the picture he was gathering from her exams was totally different from his initial impression. He changed from giving Karis pep talks about “not being a wimp,” to telling her that he didn’t know how she had tolerated for so long the degree of intestinal dysfunction that was showing up in her tests.
As the five of us (Dave, Dan, Jan, Karis, and I) learned about “the good, the bad, and the ugly” in regard to intestinal transplant, David and Dan became more convinced that this was what Karis should do, while Karis and I became more fearful of going ahead. Dave and Dan both asked important and pertinent questions that Karis and I wouldn’t have thought of, and were able to take an objective perspective that was very helpful to us. Dave completely engaged with the purposes of the evaluation, giving both Karis and me a great deal of focused attention and emotional support. It was an amazing experience to have him there completely “with” us, and it brought a great deal of healing and hope to our relationship.
At the end of the evaluation/informational week, the entire transplant team trooped into Karis’s hospital room and announced their conclusion that she needed a small bowel transplant as soon as possible. They wanted to sign her up immediately as a level 1 candidate (the most urgent category). By then this verdict was not unexpected, but it still came as a shock. Karis asked whether she could wait a few more weeks before putting her name on the waiting list. She wanted to finish the semester at Notre Dame, and make a trip to Turkey that she and Dan had planned, to visit friends for Christmas. The doctors were skeptical about the wisdom of undertaking a trip to Turkey, but they agreed to her request to be listed in January.
We took Dan to the station to catch a bus back to New York City. Jan left David and me at the airport and then drove Karis back to Notre Dame in the van South Bend friends had loaned us. Dave and I received an unexpected gift at the Pittsburgh airport. Bad weather delayed our connecting flight to the point that we missed our flight to São Paulo that night. The airline put us up in a hotel. It was like having a mini-honeymoon offered to us on a silver platter! We had 24 hours with no accessibility or accountability to anyone else, time to process what had just happened and talk about some of the implications for the future, time to enjoy the new closeness we felt as a result of going through the intense evaluation experience together.
What had happened to cause such momentous changes in David?! He says that in connection with the scheduling of the transplant evaluation, he began to realize in a much deeper way that Karis’s health was not the only issue involved. Up until then, he had not prioritized being with Karis at critical moments, because I was with her. His presence seemed to him an unnecessary duplication of effort. Dave (finally!) started to understand that my vulnerabilities and emotional struggles related to Karis’s health were an important part of what he needed to be concerned about. He began to walk toward me emotionally, and decided that caring for us was more important than the work he had scheduled for those days. With no pressure from me or from anyone else, he became willing to cancel commitments to other people in order to be present with us when we needed him—and he discovered that when he asked to be released, those people were totally supportive of his request.
An important factor, I think, was my decision to pull out of our codependency. I learned to walk on my own, taking responsibility for meeting my own needs and making my own decisions. I gave up my internal commitment to keep David happy by covering all the bases so that he could work without impediments. At the same time that this disequilibrated David’s world, it relieved him of the emotional pressure of my unhappiness with him. He explains that the masculine ego is often fragile, and that he simply did not know how to understand or handle my hurt and anger. For all of the years of our marriage, when he picked up signals that I was distressed about anything, he instinctively pulled away from me. To “get him back,” I had to act like I was fine. When I finally stopped trying, both actively and passively, to make him change, he then felt the freedom to make changes himself.
How wonderful that all of this began to happen before the transplant itself!
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