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This is a story detailing my battle with Liver Disease and the events the got me here. It is a story of hope and determination and inspiration.

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Saturday, October 8, 2011

Not so fresh fruit and rotting vegetables

Back to My Roots. Sort of.

Recently I flew into Cincinnati to spend time with my family and jump through some hoops, err… have some medical tests done in Indianapolis. The facility there is great; one of the best in the country, actually top four and the director is shooting for number one. I like that, I find it reassuring. Better to have a liver transplant at a place that’s trying to be the best rather than one that does two or three a year. Not to mention that the wait time for a liver is significantly less than in Boston.

I had done some preliminary work before arriving in Indie by sending them all my medical records, getting tested for PPD, LTD, a chest x-ray, endoscopy and my personal favorite the ever so popular colonoscopy. Come on Doc, the least you could do is by a fellow a drink. As always with the transplant teams they’re looking for reassurance that you have the proper support to help you get through this process, so I had my mother, brother and sister accompany me though the three day grind of taking my shirt off, pressing, poking, CAT scans, MRIs, blood drawing, urinalysis, ultrasounds, echo-cardio testing, psychological profiling and a two hour Q & A with a social worker.

I’ve learned to forget about dignity and pride through this whole experience. Taking my shirt off and exposing my distended bloated stomach (I’m guessing the equivalent of a 5 month Prego belly) or having an ultrasound tech shoving my ball sack around and pressing her cold jelly tipped wand into my groin while looking for blood clots isn’t terribly embarrassing. In this case the end certainly justifies the means and I will suffer any indignity, humiliation and degradation the folks at Indian University Purdue University Medical Center care to throw at me. As long as I come out the other end of this process with a better quality of life I’ll smile happily as you tell me to turn my head and cough or probe my butt hole all in the name of making me well again.
I noticed a few things while driving through Indiana and spending time in Indianapolis. They grow a whole bunch of corn and soy beans; it’s very, very flat; there isn’t really a well “defined” cuisine; grown men with really big belly’s wear


overalls, proudly and everyone is really, really nice. Everything moved a bit slower than here in New England, when people asked me how I was doing, I generally got the feeling that they sort of really cared. Everyone sort of seemed to be happily moseying along, saying hi and generally being congenial. For better or worse if I found myself lying on a technicheans examination table long enough I got to learn a fair amount of their life story. It was a nice distraction from the business at hand… learning about the Pulmonologist son’s job as a restaurant expeditor at one of Indie’s “better restaurants”; talking soul food with the phlebotomist; yacking it up with the medical assistant about her cousin Garnet who married a hair lipped tattoo artist and body piercer from Valparaiso, home of the obsessed sign builder or learning the trails of the geriatric Zimbabwean Cardiologist’s efforts in the tri-athalon. I liked these people and I was happy at the thought of them cutting me open and giving me a new liver. They were solid, no frills, hardworking, easy going middle American folks.

I was hopeful and optimistic when I got back into the car to drive back to Cincinnati with my sister. The only thing that was bringing me down was the deabiliting muscle cramps I was having all over my body. Apparently the heavy dosage of diuretics I’m on makes fluid “rush” out of my remaining muscle tissue to God only knows where. Apparently it’s creating a resivoir on my belly. This fluid rushing causes cramps that are more painful than any pain I can remember. They generally start in my hands feeling like a powerful squeezing handshake to the point where my hands and fingers seize up and I can’t uncurl them. My hips, quads, neck muscles, feet and toes shortly follow suit. Occasionally whatever muscles I have on the crown of my head and the front of my shins seize up as well. It’s a really party and nothing relieved it. At least not until Nurse Ellen told me to drink tonic water. Quinine, the old malaria cure. Well, I did and it worked. I’m drinking about 18 ounces of tonic water a day and have only tingles of cramps. Thanks nurse Ellen.

The rest of my time in Cincinnati was spent hanging out with family, sleeping, eating a little and trying to apologize to my step father for possibly hurting his feelings in a previous post. It wasn’t my intention for him to read it, but he did. And I knew he was pissed, I’d be if someone portrayed me in such a negative light, even if it’s true. Actually, I went easy on him; I didn’t mention the spankings and the physical intimidation. Who the fuck spanks an eleven year old kid? Oh, an ignorant hill billy from central Ohio and a father who’s had too much to drink and not feeling too good about himself, that’s who.

I went to pay a visit to Mr. B one Saturday afternoon; he was lying on the couch, looking weak and feeble with an oxygen hose running to his nose. My first inclination was to hold him down and step on the hose, denying him of his much needed canned gas, watching him slowly turn blue as his life slowly seeped away. It would be freeing, for me, my brother and sister, my mother and him of course, from his bitter miserable scroogie existence. He would be at peace, worm fodder, pushing up daisies. I’d hold his hand gingerly as I took him to meet his maker. The sound of the golf game on TV brought me back to reality and my fantasy ended. I’m a bigger man than that so of course I didn’t follow through, instead I asked my mother to leave the room and attempted my apology.

“Listen, I have something I want to say to you…”

“I got nothing to say to you, I don’t wanna hear whatever it is you have to say any way.”

“Well, you’re going to have to, because apparently you can’t get up and walk away from me.” I said.

His face reddened, he was getting angry and I’m sure he wanted to throttle me and I’m sure he had enough strength in his hands and arms to do just that but I wasn’t planning on getting close enough. He wasn’t hearing it… “it wasn’t my intention to hurt your feelings…”; “I didn’t write it for you… I wrote it for me…”; “Listen, it was 35 years ago, neither one of us are the people we were then!?” My apology was falling on deaf ears, as far as he was concerned the stone had been cast and there wasn’t any going back. He hollered at me, letting me know that he knew how I felt about him and I should have written it in a diary and not shared it with anyone if I wanted to get if off my chest.“Well, go fuck yourself if that’s how you feel!” I shouted over his ranting as I left the house. Finding that satisfying, I turned and walked back in the room “Listen” I said “… we’re bigger than this.” . “I think you’re an idiot for writing it.” He recanted. “We’ll in that case go fuck yourself again.” Saying it felt really good. It was immature, inappropriate and certainly not in the spirit of an apology but it felt really, really good. One simple sentence, letting him know how I feel about him. I tried. Hard. But after nearly 35 years of listening to his abusive nature spill out onto my mother, brother and sister, not to mention anyone else that didn’t meet his standard of mediocrity.

Now, I just think of him as a baby-man, helpless and feeble, sitting and lying on that couch being waited upon (much to my chagrin) by my mother hand in foot. I call him Tinkerbelle, Care Bear, Tender Vittles and Strawberry shortcake. The next time I see the man it will be all too soon.
I was pissed, relieved and satisfied as I left. I was a little flustered and a little sorry I told the old man to fuck off. Should I have even tried, should I have waited? Too late, damage done.

I decided to clear my head by driving out to the old farm in Lookout Indiana. If you’ve read my previous post Utopia you got a small glimpse of it, beautiful, sylvan, hilly and just plain peaceful. Driving out 74 through the industrial neighborhoods flanking the expressway I felt the memory of my assholish step-father melting away behind me. I could forget about that old prick, my rotting liver and the fact that I may be away from my family for months. Thoughts of riding horses through the woods and sunny glades, swimming out into the pond and treading water wear the spring fed in, playing with my favorite dog Eli and napping on bales of hay in the barn loft. I know it sounds cliché, it does, but that was my childhood or part of it. Finding a quite spot on the farm or in the woods, reading a book and escaping my reality. Distracting myself with Twain, Tolkien and David Morrell, living my life through their words on the page was pure bliss.

My anticipation grew as I got off the expressway onto the highway, each turn and mile brought me closer to the old farm. The roads got progressively smaller, rougher and less traveled, farmers on tractors stopped and waved, children stopped playing and looked to see who the unfamiliar passerby was. Everyone pretty much knew everyone else out here so when an unfamiliar car passed it created a wee bit of curiosity. Finally I turned down E C Road 950 North. It hadn’t changed much, a small white trashy trailer sat at the bottom of a hill all beat’n up and accompanied by a hazardous looking rusted out swing set, couple of beater cars on cinder blocks, hoods open and windows broken out and a some malnourished mangy dogs sniffing around for half eaten scraps in trash heaps. I was sure the hold house was in much better shape, I anticipated the place looked just like we had left it. Climbing up the hill in my brother’s car I passed a grater smoothing things out and trying to fill in the ruts caused by the last several rains erosion. Cresting the hill, there she sat, the old homestead, I could see the barn, garage and our old pastures… what the fuck… our old pastures, which had apparently been turned over with a plow and planted with vegetables which subsequently had been left to rot. It was putrid! One field had rotting zucchinis and squash, another had musk melons decomposing on the vine, half eaten by the local critters. I was aghast; this wasn’t the way it was supposed to be. Where are the sunflowers, brown eyed dairy cows and blue birds singing from a fence post?! As I got closer my jaw dropped in disbelief, the place had turned into a shit hole. The new owners built a new metal shed that had no business being there, all modern, austere and completely out of place. The barn roof was filled with holes and the whole back side had rotted off. Again, beat’n up old cars and motorcycles lie in a giant heap between the garage and barn, and forget about the random giant piles of logs and cleared thicket resting around the yard. Our beautiful old front yard was all mud and slush, filthy tire tracks lead up to the porch of the old house. An old two and a half ton truck filled with card board boxes sat in the middle of the yard, pieces of paper, shreds of burlap, plastic bags and rusted busted up old tools lay thrown about. The trunks of all our beautiful trees cut down to stumps and again, piles of rotting vegetables placed haphazardly. It was distressing but when I saw our old house I sank. The front door had been ripped off, some of the windows were broken out¸ the ugly green siding was covered in rust and mold and the shingles where falling off. Someone had spray painted “paking shed” down the side of the building.

As I got out of the car and started walking around the property I was reminded of my own mortality. Spending time here as a boy, working my way thru puberty, I was young, hopeful and saw the world as a place full of promise and possibilities. Like this land fruitful land; it fed my body as well as my soul. Goat’s milk, fresh corn, tomatoes, our own pork, the peace and solitude of the woods and fields, I was so happy here as things started out that September back in 75. Now looking around, the land was tired and worn out. It looked as if its caretaker had given up on it years ago. I waked around the property, lost and wispy in memories of what was. All the fruit trees were cut down, the back lawn leading down to the pond overgrown with brush, the pond water looking murky and slimy covered with algae.

The only thing that looked the same was the industrial door-less cinder block garage. It was solid, our chickens and ducks used to take refuge in. The old nasty rooster spent his time roosting here when he wasn’t spending his time chasing children and dogs around the yard. No windows, three sides and a tin roof. Sadly, I realized the only thing that seemed to have any permanence on this property was completely inorganic, a product of the modern age. The old fence posts making our corral leaned hap hazardly in different directions, its slats taken and used for some other project or worse, thrown in a pile just to rot for some unfinished project. I walked to the back wall of the garage where the land sloped down to the pond, I remember painting a small mural of The Who’s Quadraphenia Scooter dude and I wanted to see if any remnants survived. To my surprise you could barely make out the make out the male gender sign with the faded letters w h o on back of the guys rain. I started to feel good, a wave of nostalgia swept over me, some things seemed to have some permanence. I took pleasure in remembering the cool sunny November day 35 years ago I painted that mural, I felt satisfied in seeing my bleached out old mural. I felt some things do endure. Then, content, I turned to walk down to the pond… and I saw it. The old rabbit hutch, a small free standing structure with faded red barn wood, falling apart, it’s wire mesh door hanging from a rusted out hinge. Remembering what happened here and why all feelings of joy just sort of wilted. I remembered that things weren’t mostly nice and sunny and idyllic and blissful. That rabbit hutch reminded me that things were mostly fucked up and miserable in the worse kind of way for a little kid.

1 comment:

  1. Wow! I am glad to have found your blog (via your post on HepC Friends). Very well-written and direct. Way to go!

    I have signed up for email updates, and will be pulling for you. Keep up the good work!

    Regards,
    David in Pensacola (FL)

    ReplyDelete