June 27, 2008 Reflections on a Nightmare . . .   Or riding the dark mare by day. Friday, June 26. When the insurance case manager phoned to say that the first written appeal had been denied. The appeal letter that included chapter and verse as well as a bibliography. The appeal letter that had occupied my physician at Wake Forest for three weeks. The letter that was a virtual thesis on fibrosis and its accompanying destruction. Denied.   “Jane, you’re just not sick enough.”   In March of ’07 I called my parents in Indiana on a Sunday evening and heard my dad gasping out words to me on the phone. Two weeks later he was dead after years of congestive heart failure and lung problems. I was there and I watched and because I am a hospice worker I knew he was dying. For those two weeks I watched him diminish and go away. But I watched from my brain stem where there are only images and that perfect intuitive knowledge. I never allowed that knowledge to come to the forefront of my mind. Yet when he died, I was in no way surprised. I’d known all along. Known and never acknowledged because to acknowledge was not possible.   In early April, ’08 I spoke to the case manager at Wake Forest about scheduling my workup prior to the time in the hospital for transplantation. We settled on a Wednesday, April 23. She then said, “If we can get you worked up, we should be able to get final insurance approval by Friday and begin the donor workups.”   “Final insurance approval”??   And my brain stem knew that there was something lurking out there beyond me that was so frightening, so beyond my control, so wrong that I must never let it come to consciousness.   Of course, I’d assumed that the insurance was in place and in accord with all the preparations that Wake Forest was making on my behalf. From the moment I left Wake Forest in February, ’08, I’d assumed that all pieces of this giant puzzle of science and business were gradually being assembled to create the picture of health and healing.    “Final insurance approval”??   And I knew from the moment the case manager spoke those words that there would be no final approval. When I received the first letter of denial, I wept and called on my friends and experts. They were shocked and said that all that was needed was a new physician reviewer. Wake Forest personnel were undismayed and ready to fight. The letter of appeal was written. So many people prayed and believed that this time all would be well.   And in less than a day, the thesis on my diseases, their peculiar progression, their anomalous origin was denied. And that same knowing but refusing to acknowledge, that same stopping of breath, the same moment when the world stood still and surrealism reigned as when my dad sickened for the last time and died—all that inner knowledge was forced to acknowledge that “final insurance approval” was not going to happen.   I had tried to believe along with my friends, the people at Wake Forest, the people I work with, all the people who prayed and prayed and believed for me. I tried to believe but it was sporadic at best. I packed and repacked my bags and bedding for the hospital stay. But I did not/could not believe because I knew otherwise.   Inner knowing is a terrifying knowledge, terrifying in its accuracy. And terrifying in that it requires a hearing we are often unable to give it.