Thursday, December 24, 2009

Twas the Night Before Christmas...

I've been pretty lax on posting lately, for good reason. It's been a frustrating couple of weeks, and frankly I wasn't sure if I would continue this blog after recent events. I went up to Baylor Medical last week to get the final go-ahead so I could get listed for a liver transplant. Well, apparently I'm very sick, but not "sick enough" to get this thing done very soon. It's all based on what they call a MELD score, which is a cumulative score to show how diseased a liver is.

Normal is, of course, a score of zero. Most of my friends probably have a three or so because they love the nightlife and got to boogie. Mine is an 18. Last year Baylor Medical was transplanting in the low 20's. This year it's in the 30's. Why? It's a supply and demand thing. People are living longer, but not necessarily healthier. They're just not enough livers to go around! And apparently until I'm so sick that I'm lying in a hospital bed, I won't get one. I'm certainly sick now, and I'm feeling the full effects of the disease, but I'm still working and maintaining a "reasonable quality of life," whatever that means. The real danger is that in that time, I can develop cancer in the liver, at which point it's inoperable and will be too late to fix things.

You can imagine how frustrating this was to hear... Amanda took the news rather hard, and had a hard time holding back the tears in the doctors' office. The rest of the week back in Austin was a useless attempt at trying to get back into the Christmas spirit, and lift some of the weight of this news at least temporarily.

Thursday night we attended the Catalyst 8 Holiday party and celebrated with the rest of the Leadership Council for the great work we've done in the past year, raising money to subsidize performances for emerging artists at the Long Center. I had gotten my close friend Marcos to provide the laid-back lounge piano music for the evening, and everyone settled into a comfortable mood as they threw back strong egg nog drinks, mingled, and enjoyed the smooth sounds of Marcos' playing. I tried and tried to get into the spirit, but I still felt and anxious and exhausted, and went home early to a quiet house.

Forging ahead to try to salvage the holiday mood, Amanda and I went out the next night to see a performance of the Nutcracker Ballet. I quickly became hypnotized by the familiar old sounds of Tchaikovsky and the hypnotic rhythms of the dancers as they glided across the stage. I guess it's in my Czech blood... something about the Waltz of the Flowers speaks directly to my soul each time I hear it. I think of all the Eastern European landscapes I've seen, the old men in fine attire that resemble my father, sipping champagne in outdoor restaurants, and the ancient architecture and cobblestone streets that shine in the morning sunlight after a night's rain, as marketplace vendors set up their produce stands and carts for the day's business.

I was blissfully lost in those images for awhile, but once the Ballet ended and I came back into my own reality, I began to feel that overwhelming dread creeping in once again on the drive home.

I went to bed early , about 10PM, as Amanda stayed up to watch TV. I awoke at midnight from some terrible nightmare... I can't remember much; just that everything was pitch black all around me. I couldn't see anything, and I felt like something was coming for me. I knew that I was dying, and I felt an intense pressure crushing down on my chest. I couldn't breathe. I awoke screaming, covered in sweat, with the feeling that I was a helpless baby crying for my mother. I felt completely alone in the world, and I was terrified. Unlike usual nightmares, I couldn't completely wake up, and I was stuck in that in-between state where it all still feels very real. I was paralyzed, and the darkness and death were still all around me. The lonely feeling was overwhelming; I can't describe it. I began to cry, and couldn't stop. I hadn't done since I can remember. Something broke inside of me and there was no use trying to contain it any longer.

I awoke the next morning to a new feeling... everything was different and brighter, and nothing seemed to matter as much. I thought, "I'm dying, sure, but so what?" We all are. I felt energized and renewed. Physically, I felt as if I has turned a corner. For the first time in months, I stood up tall, bowed my shoulders back, and felt the full grandeur of my 6'4" frame.

I walked downtown that night with a spring in my step, dressed sharply with coat and tie, as Amanda and I met our friends for dinner. For the first time in months, I enjoyed the double-takes from the college girls on the street, as I felt the vitality of energy, control and grace coursing through my body like a live wire. Over dinner I explained to my friend Chris... I used to think that it was a certain point in one's youth, maybe in the mid-twenties, where you experience an initiatory death and rebirth process, one that's essential to our transition into adult life. But I was mistaken. We have to revisit that death and rebirth process at certain points throughout our lives if we are to continue to grow and evolve for the better.

I don't know what this next year will hold. I don't know when I'll get a transplant. I don't know when I'll die. I wondered if I should continue writing this thing in light of these developments. But I've decided to keep at it this next year nevertheless, because I think it's helping me to get this stuff out. Is it helping you? Let's work it out together. All we can do is try our best and know that we gave it our all. The rest is beyond our control, and that's what faith is for.

Merry Christmas to you all!!!



  1. My goodness, that's it right there. Perspective. You are so right and an inspiration. Your honesty is so refreshing. I knew there was something about you that made people want to be your friend and this is what it is. All my love to you and Amanda.

  2. Of course you should keep writing about it. Aside from your catharsis, this is the only place those of us who aren't close enough to you to hear it from your mouth can keep track of what is happening. And we are legion, many more than you think.

  3. Thanks guys! Is that you, Angela Dunn Jenkins-Bey? I miss you! Mike, your insightful words are always a welcome inspiration to me. I wish you guys didn't live so far away. Thanks for the well-wishes; I'll keep up this blogging thing as long as I can! Knowing that people get something positive from it is a true gift.

  4. I wish I was getting first-takes, much less double-takes, from college girls on the street! :-)

    On a more serious note, I can't help but feel that somehow this year is going to be better for you, Pat, and all of us. Underneath it all, I guess I'm optimist at heart.