And What Followed...

Saturday, September 9, 2006

Day 66 (76 days in hospital) - Notes from the Edge of Life

This weekend all our thoughts are on the lives lost on September 11, 2001. And for the families who have kept the spirits of their loved ones alive each day since. As a native New Yorker, I hope we can all take a few moments of silence in remembrance and in honor.

Two nights ago, a tangerine moon rose over Los Angeles. I sat writing at the campus Bistro, as the last visitors silently filed out of the hospital. A patient waved from a window on the 5th floor, adjusting his mask before rolling out of sight, his I.V. poles in tow. Every night on campus, the air becomes thick with dreams, fear, faith, prayers, anxiety and existentialism. Sitting outside the hospital was like being next to a six-story sub-woofer, thundering the tearful, almost manic thoughts of all the souls inside fighting to stay alive.

I wished I could have lit a beacon and shined it into every room, to burn away any troubling thoughts and bring peace into hearts, including my own. Suddenly I felt a comforting hand upon me. It was Uncertainty, and she graced me with a smile of assurance. 'What will be will be and know that only good can come of this. It is not the challenges that enter life that define us, but how we live through them. Be brave. No matter what trauma or challenge you face, don't let it break your spirit because it is the only part of you that lives on.'

The next night, I sat between two great California pines overlooking the sculpture garden, thinking about my brother Francis Rex, who I like to think as watching from above. "Another New Day" by Stereolab from the album "In Between" randomly played next on the ipod. "How fitting", I thought. And how lucky am I, are we, to be alive and here at this moment. Our turn on the ride. Our chance to leave a mark, whether through sweeping worldwide changes or through loving one heart. How lucky are we to be given a chance to express whatever we want, in whatever form, and to share all of it with others. Our one chance to create light… or darkness. Our forefathers knew well that true happiness was not found in the goal, but in the pursuit.

We received news today, news so good that I am exhausted from the joy. Now that's a good place to be… Joy is good, but to be exhausted from joy is the ultimate of blessings. We got the results back from the latest `graft' test. As you all know, it was looking dicey there for a while because my marrow seemed to be fighting the donor's marrow. The transplant was chimeric, part-old marrow, part-donor marrow. Not good. It was creating all these troubling complications. But the test today read "100% donor marrow". It's official. The donor marrow has GRAFTED. This is a very good sign and a great sigh of relief. My doctor was jumping up and down and her assistant shouted "Woo-Hooooooo!!!" I felt like Miss America. I was one of the lucky few. Of course the rest of the day was spent calling immediate family, with lots of tears and "I love you" racing back and forth between wires and satellites.

I'm so thankful to be alive. Now our hopes and prayers focus on the donor's marrow happily and quickly setting up shop. It's all about reconstructing a brand new immune system and rebuilding the blood, from scratch. We've turned onto a promising road, but a long one. Well, I've always embraced adventure.

In the greater of things that illness can teach, is the lesson that what truly matters is not whether you live or die. Your body may survive but your soul may be broken. While we all want to live long and meaningful lives, the journey is more about keeping your soul intact and alive, not necessarily your body. Your spirit is what will be remembered and is the legacy that will be passed onto the future.

September 11 is Monday.

Much love,

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