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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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Monday, June 27, 2011

The Weapon

The Weapon

Sometime in the early 70’s

The river house was never really my home; it was where my brother, sister and I went on weekends to see our Dad, Stepmom, several ill-kept horses and ponies and a vagabond-ish assortment of dogs and cats. There was nearly always some sort of coming and going, the wayward cousin that temporarily got thrown out of his mother’s house; Johnny-come-lately wanna be hippies, preaching the gospel of Ram Daas, Hinduism and the next ashram they’re going to crash; a Mexican migrant worker finding his way to Chicago, seeking out his wife before she gives birth to her child; homosexuals, tramps, and general fugitives. I loved that place. It was misfit haven.

I understand why most people might not think it was the proper environment for a ten, seven and five-year-old. The combination of horses, gypsies, loud music and the general lack of rules was the perfect weekend environment for a Catholic school boy, at least in my mind. I can’t remember having any rules while we were there. You wanted to climb on the roof of the house and shoot bottle rockets into the woods and maybe at a dog, no problem. Felt like getting on a horse and riding wildly bareback, shooting cousins and friends with pellet guns, no problem. There was always an adult nearby - well, at least a mile or so away - with a nearly steady hand, rubbing alcohol, and a knife, willing to dislodge and wiggle that pellet out from under your skin.  Every Monday back at Saint Cecilia’s while other kids where talking about the Big Red Machine, their sister’s confirmation and how much money she took in, or a trip to the zoo, I was trying to recreate the album cover of Fragile or impersonating Carlin’s famous Seven Words You Can Never Say on TV: Shit, Piss, Fuck, Cunt, Cocksucker, Motherfucker and Tits. Of course, I generally got ratted out by one of the girls and, of course, I generally got whacked several times and mercilessly by Sister Louise and, of course, by fifth grade my desk was in the closet for the entire year. Not an issue as far as I was concerned - it allowed me more time to come up with my future band’s name and the artwork for our premiere album cover.

Stress was rarely an issue on those weekends, at least when I was at the river house. Sunday mornings before pickup, on the other hand, were extremely stressful. It always started with Mass, back home, a quick change into our “grubbies”, breakfast and the wait. I learned patience those Sunday mornings, waiting for my dad to pull up in that shit green 68 Thunderbird. I’d sit in my step dad’s sterile living room or kneel on the back of the couch peering through the curtain, trying to distract myself from the possibility of a no show - the rationalization skills of a ten-year-old are uncanny. Generally he was always there, generally always late. Occasionally though, the phone would ring, I’d hear my mother’s voice, apathetic at first then growing into an angry whisper. She’d mutter something like “Typical” or whatever, hang up the phone, walk into the living room and tell us to go outside and play, we’re not going to dad’s, something came up.

If I was not outside at the river house, I could probably be found in the living room. The ceiling was so low it was repressive and stifling, I always felt like I had to walk sort of hunched over. There was nowhere else to go; the living room was fairly big with a step at the back leading down to the unheated kitchen. The house was decorated in what you might call “Pier One-Highway Department-Head Shop Chic.” On a cinderblock and wood shelf unit sat the hi-fi, reel-to-reel, a giant oversized chrome jack; the love is… couple book ends holding up the Lord of the Rings, Jonathan Livingston Seagull and the Little Prince.  (I don’t get the “the love is…couple book ends” line. Am I missing something?) Walls were covered with a few Bill Graham presents posters, traffic signs and a giant Jesus Christ Superstar Painting hanging over the couch, complete with a bird shit streak down the side. The other furniture included a rattan hanging chair, oversized bean bag, a giant cow skin pillow which could accommodate six heads for sleep overs, and an immense Mexican chess board.

The piece de resistance was something called the Big Jim. The Big Jim had no function, use or role. It was a box, covered in blue shag carpet that rose about eighteen inches off the ground or so. An electric cord came out of the side of the box which would plug into a wall socket and nothing would happen. Supposedly it was purchased somewhere in Hollywood out of a store front window for short money. It rested in the middle of the room to be sat on, walked around or over. At parties people would crowd onto it and dance wildly to Three Dog Night’s “The Show Must Go On.” or anything by Cat Stevens or Neil Diamond. It also served as a stage where every long hair with a guitar would sit around and have a jam session of “Take Me Home Country Road.”; “A Train They Call the City of New Orleans” or “Here Comes the Sun.” Most of them were likely pretty good musicians but they we’re either too stoned and spent too much time tuning up, forgetting and fighting over lyrics, keys, harmony and chords, or bickering about what song to play next. It almost always ended in feelings getting hurt and some burn-out sulking in the corner or stomping off into the woods, only to get lost until morning.

In that living room on one of the upper planks of the make shift cinder block and wood shelf, sat a pipe that I don’t think I was supposed to know about. I heard it quietly referred to as the weapon, it’d show up in different places of the house, just out of reach. I’d hear an older cousin or family friend say, “Should we use the weapon?” Initially my father would say it was much too dangerous and shouldn’t be handled by people with such limited experience; with a bit of what sounded like good hearted badgering, he eventually gave in, got the weapon and everyone would disappear for a spell. Obviously, no one knew I was within ear shot or eaves dropping; if they had they wouldn’t have been talking about the weapon in such a flippant manner. My imagination ran wild. What sort of weapon was the weapon? Was it a gun, a small cannon? I only had a few glimpses of it and it looked like the pipe from under a sink to me. Clearly it had some secret power. I envisioned some Viet Nam Vet buddy bringing it back to my dad for safe keeping, only to be used in a state of extreme national emergency. I thought maybe it had a trancelike capability that placed its victims into a coma only to awaken after they were preprogramed. The weapon confused and concerned me - if it was so powerful, why wasn’t it locked up? Why was it left on high shelves, behind cabinet doors, on top of window and door jams? My only hope was that at some point in my life I’d reach an age and level of maturity that would allow me entrance into the secret society of the weapon.

One early December day, I was the only one of my siblings that wanted to go to my Dad’s for the weekend, so my mother did a righteous thing and drove me the forty-five minutes out to the river house one dark Saturday night.  It was always a bumpy ride down that road, dark and a little bit spooky. My step dad wouldn’t drive down it, he’d make me get out and walk the mile down the road because it was so bad for his shocks. My mom always did the right thing though and took me to the door. I opened the door to the house and the only light being thrown was from several candles plugging up and dripping down empty bottles of Mateus. Pink Floyd’s “One of These Days” was playing, light and soft voices where coming from the kitchen, incense permeated the air and big Jim sat there quietly in the middle of the room. The air was a bit repressive with incense and smoke hanging in blue gray swirls. It was heady. Rather than announce myself, I decided to cop a squat on the couch. I sat there, eyes closed, breathing in the incense and the music, listening to the muffled voices of my father and his friends coming from the kitchen. I couldn’t distinguish anyone else’s voice; it was just nice, like the soft drone of a bee.

Slowly I opened my eyes to take in the rest of the room and reassure myself of my surroundings. After a slow scan of the room, I looked down on the coffee table, and amongst the collection of ashtrays, cigarette packs, carved Indian wooden boxes and the latest edition of Mother Earth’s News, there it sat, its shiny surface reflecting the flickering candle light. It sparkled at me, as if to say hi. The weapon.

I lost my breath for a second - what sort of infraction was this? Who was so careless as to leave the weapon in such a vulnerable location?! Someone certainly didn’t understand its value. I was sure when my dad found out he would be livid, out of his head with anger. I knew I should run into the kitchen and tell my dad the weapon was out of place, within reach… of anyone. Even me. I could pick it up… examine it, figure out its mysteries. I closely bent over it to get a better look. It certainly looked like a pipe -  I thought it was an elbow joint, but it was the piping apparatus found underneath a bathroom or kitchen sink. Later I learned that’s called a P-trap. Odd, it didn’t look like a “P.” It had smooth, heavy-looking, white tape around the long end and it was slightly discolored with a burnt copper-ish look around the short end. I slowly picked it up from the short end. Ouch, it was hot! I dropped it and it clattered on the glass topped coffee table for a second. I was sweating and panicked, waiting for the people in the other room to come in and catch me, literally red handed. I’d burned myself a little. I didn’t think it’d be hot.

I waited for what seemed like an eternity. I didn’t know what I was waiting for, maybe waiting to get caught in the presence of the weapon, waiting to get my nerve to touch it again, waiting for the weapon to tell me what to do. I got tired of waiting so I gently touched the weapon, the long end this time. It was cool. Then the short end. It was cool too. I picked it up, felt its cool metal surface and turned it around in my hands. I lifted one end of the pipe to my eye and looked in, nothing but darkness. Turned it around, took the short end, lifted it to me eye, looked in and got an eyeball full of ashes. I stuck my finger in it; it was plugged up with ash, dust and residue. Strange, must be gun powder. It smelled pungent and grassy.

It would only be a matter of time before I’d be busted holding the weapon, so I decided to face the music on my own terms. I stood up, held the weapon in both hands, deliberately walked across the room to the kitchen door and stepped down. Standing in the shadows for a few minutes, I tried to discern how many people where actually in there to witness my possible embarrassment and humiliation at the hands of my father. Taking a deep breath, I stepped into the light and down the step into the kitchen. I held the weapon out in front of me like a prize or trophy.

There were several people sitting around the kitchen table, long haired men and women, smoking butts and drinking canned beer. No one turned to look at me, they missed my entrance. Disappointed I coughed and held the weapon a little higher. Their conversation continued. I coughed a little louder, held the weapon a little higher and screamed, “Dad, one end of your weapon is stopped up!” Everyone turned and looked at me; again, I repeated myself and said in what I thought was a more grown up voice “Dad, your weapon, one end is stopped up.”

There were a couple of chuckles and everyone smiled. Someone said, “Cute kid. You need a minute to handle this Bob?” My dad said yes, took the weapon out of my hands, laid it on the table and told me to sit in the chair. He sat across from me, picked up the weapon and looked at it, set it back down and said, “Well, it seems to be okay.” Then he pointed to the pipe. “You know what this is?”

“It’s a weapon.” I replied.

“What sort of weapon?”

I shrugged and felt ignorant.

Very seriously, he said “I’m going to tell you something and you can’t tell a soul. Not your friends, not your brother or sister, no one. Can you handle that, can you handle this secret?”

I was sweating and nervous, my palms where itchy. I was finally going to find out the secret of the weapon. Finally included into the inner sanctum. Leaning close into my father, hanging on his every word I waited for its mystery.

“Have you ever heard of marijuana?”

I nodded, waiting for more of an explanation.

“This is a pipe I use to smoke marijuana.”

That’s it? A marijuana smoking pipe? Wow, the disappointment - it wasn’t a weapon, it was a pipe. I felt betrayed, crushed, relieved, but mostly I felt scared. Marijuana was bad. Really bad. It made people do bad, crazy things; it made you think hot dogs, talk and walk naked through parks at least that’s what we were told in health class. People who smoked marijuana got arrested and went to jail. I knew this because the nuns and priests had told me. I think I must have been more scared than I ever was in my life. I was afraid for my dad, for losing him to the marijuana. I sat there and cried a little bit and told my dad I didn’t want him to smoke it or go to jail. He held me, patted me and dried my tears. He guaranteed me it wasn’t so bad and that there was no way he was going to jail.

After a couple of minutes, I moved back over to my chair, picked up the weapon, smiled weakly, looked at my dad and said, “So, what’s it feel like?”

Thursday, June 23, 2011

The Waiting Room

I’ve been sitting in hospital and doctors’ waiting rooms for the last ten years - one pretty much looks and feels like the next. I’ve spent a good amount of time in the one I am sitting in today, so much time I’m sure I’ve lost count of the number of visits. It’s the GI Associates waiting room at Mass Gen; this is where I come to see Doctor A, my Gasteroentologist and Hepatologist. My wife is with me today and we’re meeting Dr. A’s assistant an RN who specializes in the treatment of liver disease.
Tension and anxiety are always part of the emotional process when you’re going to the doctor, and both are especially palatable here. Here, we’re cattle, part of the American medical process, reduced to a blue card with an ID number. The aroma of sterilization and rubbing alcohol blend with the stench of patients. The administrators try to make it as comfortable as possible…decent chairs, soothing colors, Anderson Cooper on the television with poor reception, dog-eared magazines brought in from a clerk’s home, the address labels neatly removed. This is all well and good, but I’m not really interested in reading about what Cleopatra really looked like or the mating rituals of the Ambystoma tigrinum tigrinum (tiger salamander) - although the Berry Summer Salad recipe looks delish and the retrospective on Paula Deen has piqued my interest. But in the end, nothing seems to be able to distract me from my rotting liver and the possibility of being rudely prodded by my Doc’s latex incased finger. Thankfully she knows how much lube to use without leaving me feeling completely violated and greasy. It isn’t my first trip to this rodeo.
All of us here are essentially on a cattle call; we’re either here, waiting to be seen, tested and probably delivered some less than stellar news, or waiting for a procedure - endoscopy, colonoscopy or some other “oscopy” that hopefully I won’t ever have the humiliation of enduring. And if we’re not waiting for a visit behind closed doors, then we’re waiting with someone going behind those doors. Which is worse? Being the patient, or the loved one of the patient, both suffering in their own way and, with any luck, in a dignified manner. We’re a motley crew brought together by one common denominator, a failing organ, a cancer, polyp or tumor. We come from all walks of life, a cross section of our society - you see, fate plays no favorites. So the CEO sits next to the nearly reformed yellowing and listless alcoholic, who sits next to the mother of a hipster crocheting away madly to pass the time and forget; the old man, taking his wife for granted their entire marriage until he realizes at this very moment how much she actually means to him and how lost he’ll be once she’s gone. I feel the worst for those loved ones, waiting patiently and painfully, reassuring their spouses, friends and siblings that everything will be okay.
We all look towards each other for reassurance, weak smiles in between crossword clues and sodukos. It is reminiscent of a sad-eyed dog, which has been negated, waiting on the other side of the front door for that owner who is never going to come home.
So my wife and I sit here, talk about our day, our future and quietly wait to be called.


Monday, June 20, 2011

First Contact, early 1970's

I don't remember the name of the road; maybe it didn't even have a name. It was a rut and pothole ridden dirt track along the Little Miami River. You had to drive through an old rail road tunnel and pass a couple of abandoned gravel pits to get the houses. There were only four houses on that road, all on the right side, the side facing the river. The left side of the road had a couple of over grown fields leading into some woods that climbed a hill.

The houses were initially built as summer camps for folks with a bit of money that wanted to get away from the humidity and sweat of the city. The first house was occupied by a group of “in-breds” with an assortment of cattle and chickens running through their home. What they lacked in creativity, they made up for by possessing a knack for the obvious. Their black dog was named Blackie; brown cow, Brownie; their cat, Kittie; their other brown cow, Brownie 2. You get the picture. I was never in their home, but I imagine it was an assortment of broken tools, old newspapers, and empty cases of canned meats. How many people lived in that house no one really knew - with the comings and goings, one looked pretty much the same as the next amorphic body shape, with greasy, pasty hair and the same set of assorted chipped, yellow teeth.

The road eventually dead-ended at the foot of a dry creek bed and there sat the only house really worth living in; it was only occupied on the occasional weekend when the old couple that still took care of their "river camp" came out to spend the night, light a fire, water geraniums and do a bit of fishing.

Our house sat dead in between the two of them, approximately half a mile each way. We had two nearly finished ranch homes, one further along than the other. Each had the exact same floor plan, except the left one didn't have any walls on the inside, just studs and loose wires, no heat, no water, an unfinished construction site. My dad nailed up half sheets of ply wood and particle board along the studs and decided to turn the ranch house into a horse and cow barn. The brilliance of this decision wasn't lost on my nine-year-old mind.

Our house, an exact mirror version of the make-shift barn next door except for the inclusion of running water, base board heat and walls, was just as odd. Of course we didn't have the horse shit or cow feces piling up in the corners, but it did have its own assorted smells. Being 1972, incense was pretty much the dominating aroma, with the underlying nose of rancid beef and pork fat, stale beer a sweet mildew fungus-like smell creeping out from the bottom of the back bedroom door. This room was rarely used and always dark, it didn't have a bed, but it did have an aluminum folding chaise lounge with some of the plastic webbing missing. River camp chic at its best.  The blue
indoor-outdoor carpet was always damp, a result of the walls not being properly sealed to the foundation.

Bird Dog Lane house only had two bedrooms, a kitchen and a living room. The bathroom had a sort of psychedelic poster with the Cheshire cat sitting on a giant mushroom smoking a hookah. The words "...keep off the grass..." wafted out of the bowl. I always felt there was something special I was supposed to know about that poster, some secret only club members and insiders got to discover. A few weeks later I got to make that discovery.

Friday, June 17, 2011

Head in the Sand

I'm a 47 year old man who has led for a lack of a better description a rock and roll life style and I"m paying for it now. I don't know what my intention for writing this blog is, maybe cathartic, maybe encouraging someone else to seek help before they begin walking down the road I'm currently on or possibly I'm just being self indulgent. For whatever reason, here I go.

About 10 years ago I went to see my PCP, we had a regular check up with the usual chit chat regarding food wine and travel, three of my favorite things. Wine and it's use as a self medication substance as well its distant cousins bourbon, gin and whatever alcoholic beverage might be handy. My life was a vicious circle and I was happy with it, get up, work, drink, sleep and or pass out depending on the amount of alcohol that I was able to choke down that day. A few days after that initial physical my Doc called letting me know there was a problem with my blood tests, come on back and lets do it again. He had slyly set me up with a barrage of blood tests focusing on liver function, viral loads, biliruben and blood cell counts.

Sitting at my make shift desk of a folding table, surrounded by half smoken cigarette butts and half finished bottles of wine and beer, my phone rang. I'm sure I was drinking something, probably half in the bag with nearly a bottle of Rhone in my belly. It was Doc C... "how you doing...", "good...", "I have some bad news...", "yeah....", "You have hepatitus C...".

I wish I could say I lost my breath or my head started spinning or even that I feinted. Nothing happened, he might as well have told me me I had a hang nail, it would of carried more weight.

After explaining to me that Hep C was a blood borne illness that causes inflammation of the liver among other things I took a minute to digest any repercussions this illness might have and replied "Can I still drink?"
"You shouldn't, but a sip here and there probably won't hurt you at this stage of the game."
I thanked him, quietly hung up the phone, finished another bottle of wine, smoked a cigarette and buried my head in the sand for the next ten years.