Friday, March 8, 2013

One Year

It's hard to believe. This time last year, I was laying on a table, holding my nurse's hand, as a very large needle was used to fill up five or more gallons jugs with fluid that had accumulated (quite uncomfortably) in my abdomen. I remember thinking how disgusting the whole process was. I remember thinking that I wanted the nurse to shut the hell up about her daughter's cold as she went on and on for the entirety of the procedure. Let me have my moment, lady!

That was a year ago today. I had to be wheeled into and out of the clinic in Dallas, as I was mostly unable to walk any longer, with any last spark of energy having left my body weeks before. It was the end of my second week with no sleep. I know this sounds impossible and completely crazy, but I literally did not sleep for one month preceding the transplant. It just wasn't possible any longer. Try as I might, it wouldn't happen. A glass of milk, a late night-snack, nothing worked. Nothing.

This began two weeks previous after I went to my friend Amy's birthday feeling quite unwell. I still managed to drag myself to work each day, but I could scarcely fit my feet into my shoes anymore or put on pants due to the fluid. Little did I know when I left work that Friday that it would be my last day for over four months.

I left Amy's party that evening early, feeling worse than usual, with an impending sense of dread creeping in around the edges. My MELD score was about 26 at the time, much higher than the level at which many people receive transplantation. I had not gone to the bathroom all week, but I continued to have an insatiable desire to ingest as much candy as possible. By Monday morning, after a torrid weekend of pain and restless nights, Amanda and I decided to drive to Scott and White Hospital in Temple and admit me to the Emergency Room. As suspected, everything was off. All my liver enzyme levels were off the charts, as was my white blood cell count. After several days of laying in the hospital bed, I began to realize that I would not be going home anytime soon. We didn't know when the transplant would come, and the thought of moving to Dallas to be closer to Baylor was incomprehensible. And yet, I knew now that this was no longer a manageable situation. With a drive of four hours from our home in Austin to Baylor Medical in downtown Dallas in good traffic, I knew it would be a race against the clock to get there in the six-hour time limit that an organ can be transplanted from donor to recipient before it goes bad.

The stress of the moment weighed on my mind like a mountain, and in my weakened state seemed to to be all-encompassing. It was not merely my impending death that I was worried about. It was just EVERYTHING. I wanted to go home. To get better again. To live a normal life for a little while. But I also was ready to get this all over with. To no longer have the sick feeling of dread that I could never shake, knowing that some larger-than-life eventuality that I could never plan for or schedule would catch up to me at some point.

And then, like a thief in the night, the call came. I reached through the tangle of IV tubes to answer the phone ringing beside my bed. A woman on the other end of the line excitedly told me that she was with Baylor and that a donor liver had become available and that they could transplant me tonight, if I chose to accept. This could not have been more of a surprise to me, as I had no idea I was that high up on the list yet. I thought it could still be months or even years before transplant, and was resigned to my ever-dwindling quality of life. And yet, there she was on the other end of the line, offering me a new life. As shocked as I was, I responded that I was already in the hospital, going downhill fast. She asked to speak to my doctor on call, and over the course of the next hour the two made arrangements for me to be transported by ambulance and I prepared myself. I called in my mother and Amanda and her parents, who had come down to check in on me. I sent a note out on Facebook:

Just got the call. I'm on my way up to get my liver transplant. Pray for me tonight, my friends, and be good to each other. I'll see you on the other side! Love.

Shocked replies and hasty well-wishes began streaming in. The outpouring of love was immense, and helped me strengthen my resolve.

Unfortunately, this was not to be the case for me. I was simply too sick to accept the organ, as the transplant would have killed me. This was by far the most devastating news I could have heard. To have gotten my hopes so high, to have been overcome with the tidal wave of emotion that the good news brought... only to have all those hopes dashed with the news that I was now ineligible to get a chance to live. What did this mean? Would I get better? Or would I die before I could get a second shot? 

I was stabilized enough to be transferred to Baylor. We made camp at Amanda's parents farm in Rockwall, about thirty or so miles east of Downtown Dallas. I made calls my close friends that day, essentially said my goodbyes, and waited. The next morning, Amanda and her mom made a run back to Austin for dogs, clothes, and supplies in what we thought may prove to be an extended stay with her parents. 

By this point, with no sleep for a week, I was beginning to hallucinate, and could no longer tell the difference between dream and reality, essentially stuck in the instant between slumber and waking. Every little thing took on a very surreal and very symbolic importance. Little things meant everything. Flowers spoke to me; faces in magazines implored me, searching for the truth behind death, just a I had done gazing into my father's eyes just moments after he had passed only a year prior. 

I lay in bed, thinking that if I got the call tonight there would be little I could do. Alone with Amanda's dad out there on the farm, and he could barely move much better than myself after two hip replacements. So I lost myself in the television, and began to complete my weeklong journey with "The Godfather" saga on AMC, settling in for Part III that evening. As I watched Michael suffer for his sins and ultimately find repenatance, I thought of my own soul and its worthiness in eternity. Of course, I didn't believe in a Heaven and Hell reality, right? Just the boundless love and potential of pure energy in the universe. The rest of my Catholic upbringing was all bullshit, right? No sooner did I begin to have these thoughts when an ill-timed call from my mother came in suggesting I get my last rites delivered as soon as possible "just in case". Oh fuck. I began to freak out, so I called my friend Sam, a Gnostic minister. I was not looking for the answer he gave me, which was "If you feel like you should, then I guess you probably should!" Frantically, I called the local Catholic church to see if a priest could come out to the house or at lease get on the phone and absolve me of the last thirty or so years of sin (had not been to confession since 7th grade. You can only imagine how much bad stuff I've done since, if you didn't already know.) I managed to have the receptionist patch me through to the priest on call, who sounded as if he was in a loud, teen-infested gymnasium. He was, and sounded both confused and put off by my presumptuousness.

"I'm kinda busy right now. We're having a youth group lockout. Why don't you come in Sunday morning when most people do and we can talk after mass?"

"Well, I can't really walk anymore and I have to be covered in a bunch of blankets because I can't regulate my body temperature. I also can't put pants on anymore because my legs are too swollen. And I would have a hard time kneeling because I'm so very bloated and I haven't shit in two weeks. But I may die before then anyway, so I guess it would be kind of a moot point."

"Yeah, okay. Well, see you Sunday."

"Right. See you then."

I finally managed to get through to a Chaplain at Baylor Medical, and told him I would be coming in at some point for a transplant, but I was afraid I may not make it to that point, and could he please deliver last rites for me over the phone before it was too late so that i could be forgiven and my soul would make it to heaven. By this point I was in tears, as you may imagine.

And in a moment, everything changed. He said of course. I held tightly onto my dad's rosary, the same one that he held just a year before as he passed on, and wept as the words were delivered and my soul was freed from my earthly bonds. In that moment, I let go. I took my hands off the wheel and surrendered. The overwhelming sense of release and peace set in, and I knew that I could now die a free man. The outcome was no longer important to me as I felt physically infused with a pass to eternity, like a lightning bolt from beyond that hit me, shook me to my core, and left me utterly defeated, calmed, and safe in the hands of God.

I began to slip away into hallucination as the night wore on... followed by "The Godfather" came "The Right Stuff". I was virtually in the capsule as I watched John Glenn fall from the heavens to the earth, bathed in fire as Aboriginal Shamans a hundred miles below sent up prayer and flame to guide his passage safely back down to earth. As the vessel fell apart, I felt my own soul begin to separate from my body, light and free to wander the universe. When "2001: A Space Odyssey" followed on the screen later, I knew I was no longer floating many miles above the earth, but was now on the long, long journey out into the void, and I would not return. Neither asleep nor awake, I was in a trance where the fiction on the massive television screen and my own reality were indiscernible. I floated. And floated. And finally, around 2 a.m., a message from the living came through like a rocket in the night. It was a message from my friend Mark, who had videotaped my friends The Pons playing a dedication to me back in Austin that night. It was a cover of Neil Young's "Harvest" and the words cut right through and brought me safely back down to earth:

Did I see you down
In a young girl's town
With your mother in so much pain?
I was almost there
At the top of the stairs
With her screamin' in the rain.

Did she wake you up
To tell you that
It was only a change of plan?
Dream up, dream up,
Let me fill your cup
With the promise of a man.

Did I see you walking with the boys
Though it was not hand in hand?
And was some black face
In a lonely place
When you could understand?

Did she wake you up
To tell you that
It was only a change of plan?
Dream up, dream up,
Let me fill your cup
With the promise of a man.

Will I see you give
More than I can take?
Will I only harvest some?
As the days fly past
Will we lose our grasp
Or fuse it in the sun?

Did she wake you up
To tell you that
It was only a change of plan?
Dream up, dream up,
Let me fill your cup
With the promise of a man.

The Lenten season, as you may imagine, now holds an even more special significance for me as it encompasses the season of my suffering. I have decided to honor the period through solemn reflection and renewal of my faith. As I continue to adjust to a "normal" life and get lost in the daily grind, I find that it's been easy to become separated from the things I've learned and the illumination that was bestowed upon me. I am, after all, just a man, if still a man initiated and reborn. Life post-transplant has been another set of challenges, to be sure, and I'd be lying if I said it were anything approaching easy. Issues in marriage and other relationships that were put on hold while dealing with illness are now forefront and unavoidable. The ticker-tape parade of excitement has died down, and now I just go to work and come home like everyone else. I look the same as everyone else, and blend in so easily that one would never know what I went through such a short time ago. My body works fantastically, better than I could have ever imagined, as I watch myself get stronger as I put myself through the paces at the gym.

But the truth is, I'll never be the same as everyone else. I'll always be a little broken. I was sick my entire life, and although I may look well, a part of me died on that table and will never come back. I have walked with death and spoken with the dead. And try as I might, I'll always have one foot on the other side. And I'm okay with that. I know now that's it's a gift; one that I can use in helping others cope with loss, pain, and devastation. One that can bring hope, even when all hope is lost.

The photo above was taken at my mother's home last week. Most of the old antiques have been sent to auction, and with it the last traces of my father from that place. The land has been cleared for development, erasing the foliage from the peninsula that once played home to a world of childhood wonders hidden in the woods along the surrounding hillside. The endless Gothic hallways and corridors that once felt wondrous and inviting and now cold and dark. On a larger scale, Waco itself felt empty and abandoned, as if I were walking through a dream that I had once dreamed and returned to many years later only to find it greyed and vacant. Most of the people my age had long since moved away, and the old blue-blooded families that still retained a firm grip on any future development were slowly dying on the vine. 

Finally, I took my mom to St. Mary's Catholic Church downtown, and was saddened but not surprised to find less than twenty people in attendance of the main Sunday morning mass. This was the church that I had served as altar boy in, the church that held hundreds of devoted faithful, most now long dead. The Catholic Church is going through a similar process that I experienced myself... they now have an opportunity to be transformed into a new age, or die clinging to the old. It matters little to me. In the end, only God is eternal, as is man's soul. The church will fall, countries will fall, empires will end. Nothing is forever on this earth. 

As I was able to bury my memories of the past that weekend and grieve for my father and all the lost possibilities of a home life that I never had and now will never have, I felt reassured in an earlier realization. Life is long. We lives many different lives within the one. But the past is over. And the future is unwritten. Be here now.

Of course, this is not how you want to start your pre-SXSW weekend! I get that. I'm certainly not here to bum anyone out; just trying to lend a little perspective. While we're here, let's enjoy life's rich pageant! There's music to be heard, art to be seen, conversations to be had, food to be eaten, love to be made. Go out and do it now, for you are here and so, so very alive.


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