Crying The Dust From My Eyes

A week from now, I will celebrate my second anniversary of the most emotional day of my life.... October 11th, 2009, I woke up from my coma.

I've had my hands full lately trying to wrestle with all the complications brought on by my failed surgeries two years ago. Not everyone understands how completely botched my surgical procedure ended up... or what the long term consequences have been. I'll save that recap for another night. For now, let's just say that recovery doesn't happen overnight and the stress never really goes away.

How does one go about celebrating a horrific event? Do you throw a party? Do you bake a cake? How many candles are you supposed to blow out? Do you exchange presents? I feel like our culture really lacks for ways to mourn and grieve. We have a million ways to party into oblivion, thousands of ways to excuse our indulgent behavior, but so few ways to share grief.

Given this obvious lack of cultural guidance for mourning, I will do what I do best.... I'll share a story.

The cool night breeze that spilled through the vents in the camper trailer was just enough to take the edge off the last remnants of the day's heat. The aluminum trailer walls were still warm to the touch. All day through the hundreds of miles, the trailer got hotter and hotter. Now, the sweet wind that trickled in was so welcome. 

The hardest part was trying to decide if rolling over was worth the slippery unsticking, and repositioning, or would it be too much effort to try to cool off the side that had laid against the sodden mattress? So much pain, so much fatigue. The delerium came in waves like nausea. Even turning my head was too much work. The many bags of overripe potatoes that held me down to the bed made moving almost impossible... until I realized nothing was resting on me except a thin sheet. 

By the time the first recoil of revulsion rolled through me, I was able to make out sounds outside. We had stopped for the night. Judging from the sounds of loose fine gravel underfoot, I guessed probably a parking lot. It wasn't overlong before I could begin to make sense of the strains of music outside. I knew I had to be in Hell since only in Hell would they play modern country music over a cheap PA system just loud enough for it to sound like cats fighting in a two liter soda bottle. It wasn't long before I heard another person walk by. The gravel made sense now. We had to be parked somewhere. The trailer had stopped all the shaking and rolling. We were definitely parked.

When I heard the many throated roars pull into the parking lot, I couldn't quite count the number of motorcycles, but my guess was a good half-dozen. As each biker shut down their ride, and the silence returned, more feet outside my world made me aware of just how thin these walls were. Their exhaust hung too long in the air and was now coming in on the night breeze. Great. The nausea returned and with it, whatever remains of my lunch I had, came right up.

Each passing person sounded so close but no one came to open the door of the camper. Wishful thinking had me praying for someone to stop, perhaps hearing my breathless pleading. My whispers amounted to nothing. I pressed on the walls but even my hardest pounding was but a feather touch on the aluminum sides. I had only enough strength to gag again as I tried to breathe my way through the pain. Blinking hard to push dry-salted tears out in hopes that they might rinse clean the bits of vomit that I couldn't reach before falling back asleep exhausted.
The music outside changed while I slept. By the time I roused, the only sounds were of argument and bravado. My guess was that some of the bikers had done or said something to someone and now were itching for something to get angry with. The violence was palpable. I waited for the sound of breaking glass, of screaming, of fists and leather. 

Instead I was surprised to hear the soft metal hinge of the trailer open. The blast of cold desert night air rushed in with just enough dust to steal away my breath. I coughed twice and tried to open my eyes. Finding them crusted over again and weeping burning hot salt tears, I just wept. When I heard her voice ask how I was doing, I fell. I fell and fell. Over black empty space. As she pressed the cold wet cloth into my eyes, clearing away the debris, I could see the concern and worry across her face. She passed a new, fresh, colder cloth over my brow, running it over my neck, ears, and back over my brow again. Her gaze met mine and we both realized I was awake. 

The trailer was gone. Replaced by small and boisterous Italian restaurant. The heady rush of  rosemary and oregano permeated the air. Olive oil and simmering tomatoes... definitely an Italian restaurant. On the wall in front of me was a small space reserved for waiters to process their orders, write up checks and other miscelania. Just to the left of that was a small alcove that had two small wall plaques made of plaster and painted; one of fruit and one of vegetables. A small way past the waiter's station and slightly to the right was a short set of stairs and a door to the outside.

Standing in the doorway was the most amazing sight I have ever beheld. My wife leaned against the counter, hands on her hips as though surprised I noticed she was there. Refocusing my eyes, I could see our dear friend Mary Ellen standing beside her. They moved closer to me and for the first time in years, I could clearly  make out what was being said. 

Nancy pulled closer and was so happy to see me that she was crying. Fighting everything holding me back, I pulled and pulled but couldn't budge. I opened my mouth and nothing came out. Nancy looked into my eyes and tried to explain what had happened. It didn't make any sense. All I wanted was to hold her, to kiss her, to tell her I wasn't gone. 

In the end, all I could do was cry. The tube in my throat made it impossible for me to say what I so desperately wanted to say. So I cried. Nancy brought her head closer to me and tried to figure out what I was trying to communicate. Standing back up she asked if I was trying to tell her that I loved her. I didn't know tears could be so hot. She knew. It was her birthday. All I could do was cry. 

Muddling Through and Looking Back

Two years ago today, I sat in my room on the rehabilitation floor of the hospital. The surgeon came into my room after lunch, and with a few snips of thread attached to my neck, cut and lifted out my tracheostomy tube. With little more than a wide strip of gauze across the open slice in my throat, I was told... "that's it."

Sitting there, exhaling with emphasis to feel the hot air pushing out of my throat... has to have been one of the most odd experiences in my life. No restrictions on food or drinking. It wasn't like they had to line things up in my throat, or sew things back together. Just pull out the tube, and all is well and normal. Weird!

Now here I sit, two years later. All the weight that had melted off while I sweated through fever after fever in the ICU, is back on (minus about 15 pounds.) I have more issues with my health than I can shake a fist at. I thought, at the time (in the rehab unit) that all I needed to do was get out of the hospital, start walking and everything would be fine. 

We never dreamed I would herniate so massively. We never expected the colostomy to be so problematic. I never imagined that diabetes would determine the course of my life. I certainly never thought that I would have heart issues or sleep apnea to contend with. And that's just the tip of the iceberg.

Two years on... and I am planning to go in for a gastric bypass surgery this winter. Yep. I am going to let them turn my stomach into a mini-pouch. The plan is to lose the better part of a hundred pounds and then the surgical team in Rochester will rebuild my innards and remove this colostomy. They also aim to remove the hernias and fix all of my abdominal muscles. Should be exciting!

In the meantime, I struggle. 

It's the little things... like trying to tie my shoes while maneuvering around this distension in my abdomen. I feel (and look) like a pregnant woman. I struggle with the MRSA that I picked up in the hospital... as I go through outbreaks on my skin about every 4-5 weeks. No fun. 

I try to think about what life will be like two years from now, when all the surgeries are done and healed. 

I try to think about going out in my kayak and not worrying that getting in and out of my boat might cause my intestines to burst out of my stomach. I try to imagine being able to lift groceries from the van, or hugging my wife as hard as I want to. And when I think of how it will feel to not be carrying around all this massive weight... it is wild. Strange. Wild. Alien. I am excited about the prospect. Scared out of my wits too. The PTSD makes damned sure to raise its ugly head every time I am in the hospital or meeting with a doctor. 

Which brings me to this week's self-portraits. It has been a good week. Lots to think over. Lots of things, small things, being accomplished. Some new opportunities. Some old issues coming to the surface. 

All of that shows up in these portraits. I think that's what draws me to photograph things every day. The pathos. The life. The hope of catching the story with just a glimpse and a flicker of light.

Giving Thanks (repost from Nov 23, 2011)

Two years ago I celebrated Thanksgiving with my in-laws in Corning NY. It was all I could do to drive that hour long drive over the hills to their house. Sitting on the chairs around the table, I bruised my sit-bones (yep, my ass!) because there was no muscle left from my sedated time in the coma. We were all on eggshells, not really knowing what I could handle. Afraid that I might exhaust myself just sitting up for too long.

I sat there, looking around at my family. The family that sat by my bedside... that worried every time the doctors wouldn't meet their eyes.... that banished fear with every breath they took. The family that took Aurora and I in and made us part of their family, no question.

I sat there, looking at my family and was for the most profound moment, thankful.

Each moment I have had since waking from my coma has been a gift. The most precious gift I have ever known. Time with my family. It doesn't matter whether it is an hour of quiet, ten hours of insanity, or just pushing the shopping cart through the grocery store. If I am with my family and friends, it is time well spent.

Two years ago, I woke up grateful. To be free from where I was. To be back. To see my wife's crying laughing eyes. To be loved.

Tonight, on the eve of Thankgiving, I am grateful for the time I have had lately. Time spent healing. Time learning about feelings. Time to breathe and grow. Time with the people who care about me deeply. Time spent preparing for another surgery. Time preparing for a whole new me. Time with my loving puppy.

My words fail to say what the tears in my eyes say so eloquently. I am so thankful to be here. So grateful.

Another Story (from March 31, 2012)

It has been a long time since I last relayed one of my coma stories. This one takes place on the West Coast.


As we rounded the bend, the cliffside to our left blocked the view of the outer lane of the road. Slowing for the curve, and looking over the edge of the road, I could see the beginnings of a pull out. Braking hard not for fear of danger but simply for the chance to get out of the van and stretch our legs. It was only as the tires met the gravel that I realized that we would have to leave our van on the side of the road. A huge tractor trailer had blown a tire and was using the ditch adjacent to the pullout as a way to lift the truck enough to change the tire.

Scuffling my dry boots along the sharp gravel, and taking in the salted air... I made my way over to the trucker to offer my help. Instead I found him beside his truck, hat down over his eyes, asleep beside the front of the cab; taking advantage of the late morning shade thrown by the cliff and the truck. I was guessing that he had either tried fixing the flat during the night and had given up, or he was waiting on a wrecker to come.

He heard my footsteps and looked up, waiting for me to ask the obvious questions. He looked like he had been asked the same questions a hundred times. Turned out that he had. He had been stuck in this very spot for weeks. Everyday began the same,... some kind samaritan would wake him, and he would still be sitting there, waiting to fix this broken down truck. Some days it would be a flat tire, other days it would be an engine problem.

Looking past him a little further into the pull out, I saw that there was a small restaurant just beyond the truck. The establishment was toenailed into the terra-firma with not much more than hope and a few beams. As I walked closer I could see that the path to the entrance divided with one small footpath leading right to the edge of the embankment. From the doorway I realized that there was a stairway that led down the cliffside to the ocean below. Looking at the stairs, I noted that it would take a good twenty minutes to make that climb down and probably twice that long coming back up.

The beach below looked like even on a sunny day it would be cold and wet. Littered with fist-sized stones and wet sand, it was certainly not worth the trek down the stairs. The flotsam that made untidy piles near the cliff's bottom were as grey and nondescript as the sand and flat water. Tangles of ropes, logs, bits of colored plastic, and here and there, recognizable bits of detritus.

Seeing that there might be something more suitable to my taste, I entered the doorway of the restaurant and was surprised to find it even smaller on the inside than what I had assumed it would feel like from the parking lot. The ceiling didn't quite brush the top of my head, but nevertheless gave the feeling that one good rainstorm might just collapse the building entire.

There was no waitress at first glance around the room. No one eating either. The silent cash register was kept company by a small stained sign indicating that I should sit anywhere I liked.

It was only after I sat down at the counter that I realized that there was no smell of anything cooking. No sounds of a griddle sizzling. No dishes clanking. No coffee cups being slurped from. As I looked out the small window in the door, I realized that I could almost hear the dust settle.

I inhaled and as I slowly let the air out, I realized that I had no air to breathe out. I pushed and looked at my chest as though somehow it might cough and find air to expel. Nothing came. Like rain on a tin roof, the dust came down. The soft dust drummed weeks and months away.

Hell is a Lonesome Place

Hell is a lonesome place.

Dark, wet, and sticky. Smells like the ass-end of a Burger King dumpster on a hot summer's day.

My friends aren't here. This is hell.

If I had friends here it wouldn't be so bad.

The tables in hell are made from perforated metal... large holes maybe an inch across, and then dipped in some grippy plastic. The tops of the tables curve downward slightly, like they were left out in the sun just a touch too long and started to droop.

None of the chairs in hell are comfortable. They either have no backs, or they rock side to side. Find the perfect chair only to realize that the back is broken as you lean back and nearly fall. Stand up and find yourself covered in itchy pet fur, bits of torn wool and reeking of stale urine.

In hell the televisions are always on. Nothing you want to see is on... but the TV strobes in and out of your vision no matter where you look. Compelling, numbing and terrifying at the same time. The audio track fails to sync so the newscaster's voice sounds too much like a detergent commercial.

Hell's designer should be fired on the basis of creating false promises. Everywhere that should be clean is anything but. Places that should be hidden from view, you are forced to walk through. Escalators that lurch and stagger. Handrails wait with splinters and smears of mucus left behind by toddlers too young to know better.

The custodial crew in hell expect everything to be recycled. Not just the good stuff. Everything. When you line up for your meal tray, and try to catch a glimpse of the kitchen, it looks like the food was just pulled out of garbage bags and broken milk crates. It is the smell that gets you though. The same salty, hot oil... the knowing scent of fried something or other. Your mouth waters before you notice the sickly sweet smell of rancid putrification.

In hell there are no bathrooms. Never mind a long line, there are no bathrooms. And worse still, you always need to pee. Every dark corner looks appealing as a place to stop and urinate until you realize that is exactly what everyone else has done. The pain comes in waves. Nausea mixed with sheer terror at having to keep waiting for a real bathroom. There has to be a bathroom somewhere. But there isn't. Hell's plumbing was designed by a general surgeon.

All of the voices in hell combine fingers on a chalkboard with toddler wailing. The resultant reverberation makes conversations sound like the clamor of an engine room on a cruise ship. In hell, you can see the horrific waves of halitosis as people cajole one another. Eventually, even your own inner voice starts to sound like your neighbor's cat in heat at two in the morning.

In hell, your fellow travelers are the bastards who screwed up everything they touched in your life. They are the assholes who broke your heart, teased you, molested you, chose you last for games on the schoolyard. Remembering the spilled milk, torn clothes, bitter iron in your mouth mixed with salty tears and the slurping back of the snot that just won't stop running down your nose... these are the people standing next to you everywhere you go in hell.

There is no view in hell. I tried for over a year to find a place from which to see out. I looked for a window, but all the windows just led to more halls, rooms, and escalators. There is no outside in hell. Everything is wrapped up in the dusty oily resinous exhaust that builds up between the acrid cleaning sessions that happen so infrequently. Touch anything and that grime finds its way on to you with even the slightest brush. Mirrors laugh at your reflection.

I kept waiting for a phone call in hell. All of the cell phones in hell ring incessantly. Not mine. I was surprised to see that there is cell reception in hell. Probably because of AT&T. To this day, I am not sure if that call would have been a pardon or my final sentencing.

I was in hell for over a year. Trying to tell time in perpetual twilight is like vertigo for the timeline.

Next week I begin the observance of my third year since entering the coma. This story was just one of many dozens that came from that experience.