Monday, September 28, 2015

Tall, Y'all

The irony of living long enough to finally have a healthy body: having it start to grow old. My newfound energy is telling me to go! go! go! and make up for all that time I lost being sick. My almost forty-five year old stretch of bones tell a different story.

I was never much of an athlete, unlike my Dad and older brother. Blame it on the early onset of my illness, if you will, but the truth is, I'm about as uncoordinated as they come, and I never had much of an interest in competitive sports, save for the years from age 10-13 when I was a rabid Cowboys fan (the Danny White years, go figure). But I always enjoyed using my legs. I guess I was in third or fourth grade when I started to notice that I was a bit taller than the other kids. I had a naturally long stride. I wasn't really a fast runner, but I enjoyed stretching my long legs out to see how fast they could take me through the woods around my hilltop home. I would wander off into the thick wood for hours at a time during the summers of my youth, exploring the ruins of old farming equipment and rusted-out cars left by the freed slaves that settled the land. I would join my brother down, down, down, ten minutes down the dense trail, finally onto the vast shoreline rich with treasure: clams and fool's gold to be found while slogging through the water with my ever-growing legs. Stretching my legs out as I watched my brother cast long into a fading summer early evening, reel, pop, and bring in a striper that would be a hot topic of conversation once we got back home. Pushing my legs back up through the darkening forest, folding legs as I watch and learn while Dad fillets said striper, resting legs as I watch and learn whilst Mom and big sister gently work fillets into egg, flour, cornmeal.

As the cooler winds blew in and "The Greatest American Hero" was hours away from its fall premiere on ABC, I begrudgingly laced up my Keds to join Dad on the first of many mandatory evening runs. Dad had polio as a child and was laid up in the Galveston children's ward, all alone, for months as one of his calves atrophied. He recovered by lifting whatever heavy plowing equipment lay around the Angleton farm he grew up on. By high school, Dad was dead handsome and a football star to boot. He knew that hard work and Czech genetics could pay off for me too, even though, like him, I had spent much of my childhood in hospitals. So we ran, up the long road to our gate and away from my final chance to be able to discuss the hotly-anticipated premiere of "The Greatest American Hero" with my buddies the next day at school. Past the mailboxes, up the road just beyond Mrs. Casey's, cut across as the hill bends around and down, through the thicket and into the neighborhood below. Keeping pace with his long legs, past the aging, greased-hair and bespectacled execs watering lawns while smoking pipes, past the barking dogs, endless neighborhoods, all serene, all quiet, down another crest of another hill as the sun sets on the horizon in the distance, down along Lakeshore Drive as the cars zip by, back down Hillcrest through the thick dark wood, up the hill, around the bend, and home to our wooded acres. This procedure continued for a couple of years, and while I never became a long distance runner, I cherish the time I had with Dad, stretching out my long legs to keep up with his. I even added a terrycloth headband along the way to my running ensemble: long athletic socks, red shorts with white piping, and my best Spiderman t-shirt, for good measure.

Later, those long legs walked me across the stage to receive my diploma from Baylor University, up the aisle to my wedding, and across much of Europe, America, Mexico, and the Caribbean as I expanded my worldview.

As the years wore on and my illness became more debilitating, I watched in frustration as my legs began to swell, bruise, and turn yellow. They no longer moved the way I wanted them to. Most days, I was lucky if they moved at all. One simple tap on the surface of my skin could be debilitating. I remember one day early in the summer of in 2011 as I loaded up a suitcase after a long weekend in Port Aransas. The case barely tapped my left left as I loaded it into the SUV. The next day, the leg had turned black and was severely swollen. That one simple tap had burst all the blood vessels on my shin. I was on crutches for the remainder of the summer. Even still, I can see the blue-black reminder that has permanently scarred the surface of my skin.

The disease progressed rapidly in 2011 and putting one foot in front of another became increasingly difficult. I continued to get up every day and go into work, but the short number of steps from my car to my office near the back door of the station were becoming more difficult to navigate each day. I no longer could put on shoes with great ease as my feet had become too swollen to fit into most of them. Some days I would simply wear sandals if necessary. I hid out in my office most days and did my best to work, as my video editing job was something I could manage with little physical effort or social interaction. As the ascites added sixty pounds of water weight to my frame, I no longer was able to stand tall into my natural height and hunkered over, unable to fully support my increasing weight gain. My feet constantly felt as if they would simply burst open from the skin stretching out too far and taut. The pressure was unbearable most days, and yet each passing week seemed to be a new exercise in determining what "normal pain levels" meant for me.

Finally, and with some relief, the whole house of cards came crashing down in early 2012, as documented earlier in this very journal. What I've not written about are the gory details. I'll save the reader once again from this level of intimacy and simply try to relate the feeling of horror as one watches one's abdomen, legs, and every other lower extremity swell to an almost comically enormous size. I started to wonder if they'd ever snap back into shape (they have, thank you). But the most emasculating of these symptoms, believe it or not, was the loss of my legs. It took me several minutes and plenty of help to pull myself up out of the hospital bed, drag the iv stuck into my hand, the Port hardwired into my jugular, and all of the rest of the wonderful spaghetti of cords and cables with me to the restroom. As I pulled away the robe and stared at my self naked in the mirror, I did not recognize the bloated yellow corpse of an old man standing feebly in the glass. Within a day, my legs would finally fail completely.

After the docs found cancer in the second donor liver, they sent me home at around 11:30pm that evening (March 17, 2012) to wait for the next opportunity. We went back to Amanda's parent's home just outside of Dallas to try to get some rest. But I would not sleep. I had not slept in almost a month (the honest truth, I may hold a world record) and I knew I would not now. The burning pain in my stomach and intestines increased in intensity. Sometime in the middle of the night I tried to walk to the bathroom to sit upon the toilet. It has been weeks since I had gone, and the hot poker searing a hole through my abdomen taunted me. I sat and waited, to no avail. I tried to rise, the lights went out, and I fell forward. Amanda rushed to hold me up but could not support my weight. Her parents rushed in to help, and finally managed to move me back into the bed. Soon her hulk of a brother was there to pick me up and put me into a wheelchair. I was no longer able to use my legs at all. In the ER, I could not see the pen in front of my face to sign the admittance papers. I was placed onto a table in a bright room where doctors valiantly searched for a portion of chest to insert a pict line. This process took some time and several painful tries, as most of my surface veins had collapsed. They checked my stool. I was indeed hemorrhaging internally, but it could not be determined from where. After being admitted to ICU, I underwent an endoscopic procedure to determine the source of the bleeding. It turns out some veins inside the upper portion of my left leg had simply fallen apart, and I was slowly bleeding out. They managed to stop the bleeding with some drugs, but I was now completely paralyzed from the waist down. My once long and slender legs had turned a blackish purple and were swollen beyond recognition. I could no longer even register pain at this point... the lack of sleep for three solid weeks and insane amounts of physical torture had somehow separated my mind from my body, and I now experienced these sensations as something that was simply happening to this shell of a body that my spirit had separated from.

When the third and final offer for a donor liver came four days later, my liver had shut down completely and my kidneys were following suit. The surgeon explained later that I had about six hours left to live when they transplanted a healthy adult liver into my body.

These days, I marvel at the fact that I'm able to use my legs again at all. And yet, there they are, long, lean, and more muscular than ever, moving rapidly back and forth before my eyes, taking me further down whatever trail, treadmill, or city street I may happen to be on during my regular evening runs. I keep moving, and I think of my Dad, wondering if he'd be proud of the fact that I managed to pick myself up and keep moving, just as he had so long ago. I've seen my body suffer the most extreme physical torture and come back transformed and renewed. And I think, if it's capable of surviving that, what else is it capable of? Thanks to my donor's selfless gift of life, I'm looking forward to finding out. Standing Tall, y'all.

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