Don't Give Up

As a kid, curvy roadways used to make me violently ill.  There’s something about the constant turning, causing the stomach to shift from side to side.  It seems like every time my family took out on a winding road trip, it would be either burning hot outside, or damp outside, so the car interior was always warm and muggy, so the nausea of the rocking back and forth - sliding a little along the vinyl back seat – unsecured by a seat belt, came along with uncomfortable sweats.  Recently, I drove through Newberg, a small town about 25 miles southwest of Portland.  I will always associate Newberg with car sickness.  When my family moved from Portland to the Oregon coast, we passed through and I asked if we could stop, because I thought that I was going to throw up.  The deep breathing my mom suggested was not working.  We stopped off at a donut shop.  It was a rainy and humid mid-morning.  A common rainy Oregon day: wet and gloomy and strangely warm and humid.  The kind where you need a jacket to keep your clothes dry, but you don’t really want to wear more layers.  The four of us sat inside the donut shop with a few plain round cake treats in the center of the table.  My dad seemed to have a thing about ordering the plainest donuts in the world.  If I think back on it, his decision was likely partially based on the fact that they were the cheapest option, but it’s just as likely that his decision was to not offend anyone’s tastes, which always had the opposite effect.  My brother and I each had a half pint carton of milk and my parents had styrofoam cups of coffee.  My stomach was mildly better, but my head was still spinning and I felt like I was burning from the inside, which I remember because my dad was getting impatient and wanted to get back on the road.  I chewed the same bite of that donut for what seemed like hours, until it became a viscous goo that wadded up in the crevices of my gums with no intention of going anywhere near my throat.  I felt like I would feel years later when I experienced my first tragic hangover and every one after that.  I stared at the milk.  I hate milk.  I always hated milk.  I was always being given milk and I could not figure out why.  My mom had opened it for me, so I was afraid I would get lectured about waste, but luckily my bother chugged it down with his strangely amplified swallowing noises.  Glug Glug Glug.  Welcome to Newberg.

Why was I passing through Newberg?  I’m not really sure.  I have made reasons that take me to or through Yamhill County four weekends in a row.  This most recent trip, I took a route I haven’t used in years, after having driven back and forth through there countless times as part of that two hour trek from Lincoln City to Portland and back.  Not far from where I remember that now long gone donut shop, I turned right onto a highway I don’t think I’ve ever noticed before.  It was a narrow two lane road that immediately began drifting back and forth needlessly.  Though I no longer seem to get car sick, I still don’t appreciate these types of roads.  I don’t have a particular affinity for driving, beyond the convenience it provides, so it all feels like too much work.  Yet, here I’ve been spending parts of my weekends driving through the countryside.  I suppose it’s a way to get out of the house responsibly during the Covid lockdown.  It’s also been a place I’ve imagined as an escape over the last several years.  I explained this a couple of years ago in the post Jennifer She Said.  The rustic Yamhill County has become a wine connoisseur hotspot since those days of plain donuts and car sickness, yet it has retained its quiet rural time capsule aesthetic.  It is still sprinkled with tiny towns with broken streets often slowed down by commuting tractors creeping past small local markets, dive bars, tiny schoolhouses, and now the occasional fancy tasting room for a nearby vineyard.  The escape daydreams started popping into my head with the image of living alone in some small house, working evenings at a small local pizza shop pouring pitchers of beer for parents after a local high school game, sharing odd philosophical notions or inventing on gossip to the locals.  I’d imagine I’d spend my days writing – believing that I actually had the talent and the will, and possibly hosting a local radio trade show, trying to sell or trade off Orville’s rusty back hoe or Thelma’s old claw foot bathtub that’s been sitting out back for the past 20 years and maybe spinning Shoegaze records for the farmers to enjoy.  Of course, these ideas hinge on some alternate reality where towns of less than a thousand people would have a radio station, the pizza place was still in business, and that I could survive on minimal wages, no healthcare coverage, or a nearby massive medical staff of specialists to manage my wonderful genetic syndrome.  The alternate vision?  That one involves going out to some random field at the edge of a forest to die in that peaceful setting.  I suppose it could be considered alarming that I keep finding myself returning there every week, but I have no plan.  No plan at all.

The day before, I was at the work office when a full on panic attack struck me.  I suddenly could not catch my breath, I became light-headed, and an overwhelming feeling of alarm surged through me like a lightning strike.  I do not blame my job directly, though I’m pretty sure it was triggered by a flash flood of the usual insane vague emails I so often receive, full of demands that I rarely have not been provided the proper tools to address.  These messages tapped into the incredible weight of anxiety that is already in place and has become intolerable.  A lot of us are dealing with anxiety, uncertainty, and isolation during these past few months of pandemic lockdown, and I have not been immune.  I honestly thought when this all began to disrupt our lives, that I would manage fairly well, since I have spent most of my life in a kind of self-imposed lockdown.  I could not have been more incorrect.  I have been battling depression for the past several years, made more acute after my 2015 Halloween hemorrhagic stroke, and these past few months have absolutely exacerbated all of my greatest fears.  I have been mostly cut off from my small group of loved ones who I rely on for support and therefore am spending way too much time dwelling on the emptiness that I feel.  Consciously and logically, I know that I can make decisions to choose to see the positive, but my brain will not allow these things.  Instead, I am left terrified, hopeless, and listless – powerless to affect change.  When any additional challenge passes my way, like the work emails, the bottom drops out and I feel like I’m free falling.  The only option that is to surrender and allow the inevitable crash to happen.  

About six miles in to my journey along this recently discovered highway I turned onto, I had my window down, and I was trying to feel relaxed by the breeze whipping into my face.  The music of Russian trio акульи слёзы (Shark’s Tears:  https://sharkstears.bandcamp.com/music ) was loudly enveloping me like a mournful blanket of melancholy.  As I approached an actual fork in the road, I veered to the right and up a slope into a forested stretch – away from the open fields of the previous couple of miles.  It was there, along the roadside, at the end of a tiny gravel driveway, I spotted a plain white campaign style yard sign with block letters reading “Don’t Give Up.”  I began gasping for breath again.  Would I begin to hyperventilate like I had the day before?  I could feel blood rush into my sinuses pressing in like a punch to the nose.  The sign brought to mind memories of the Frankie Goes to Hollywood “Frankie Says” slogans that they so brilliantly used to promote their music back when I was first beginning to spend all of my money on records.  I’m not sure if this flashback was the cause of the sudden emotional reaction, or because the sign was so unexpected, like a cosmic message placed there along my unplanned path to put my mind at ease.  I began to think about the Peter Gabriel / Kate Bush "Don't Give Up" duet.  It was a song that I adored when So was first released.  It tugged at the heartstrings and shone like a beacon of hope.  As close as I possibly could, I identified as a young teen with the Peter Gabriel character of the song, and longed for the soothing, comforting voice of the Kate Bush character to guide me back from the proverbial ledge.  The older and more jaded I became, the less effective the song.  It was too contrived, almost to the point of pure cheese - but that bass-line is impeccable.  Sort of like Depeche Mode’s “Blasphemous Rumours,” which is so heavy handed that when the life support machine sound effects come in like Darth Vader having an asthmatic attack, I can’t help but laugh, despite concurring with the song’s message that there is no such thing as fair and that there is no spiritual grand plan.  There is no plan at all. 

Soon I was back onto a bigger and straighter highway heading back to where I live.  Knowing that I was going back, pushed my thoughts far from the hopeful encouragement of the "Don't Give Up" sign, or is it an unrealistic command?  The realization that nothing is changing for the better only began to fuel my urgent desperation for escape and the inability to know how.  I began to feel completely exhausted.  The lids of my eyes began to linger against each other when I blinked.  The image of driving off the road into the strange swampy field adjacent to the road passed through my thoughts, but instead I pulled onto the shoulder, got out and leaned against the car, and was again overcome by uncontrolled panic.  Erratic breathing, nausea and pressure built up from within so quickly that I thought I might burst.  This was a new kind of car sickness.  I stayed there for a long time, as I began to calm down.  I fought off the urge to lie down on the blacktop next to the fog line and drift off to sleep.  Instead I checked my phone.  No messages.  

Why has this time now been so difficult to deal with?  I have been through a lot of challenging times, I have always found a way to battle through.  When my life has been in the balance with a myriad of emergency health struggles, I have been a fighter.  I have refused to give in.  I have never worked harder, than I do when I have had to recover from devastating surgeries and debilitating medications.  During my three years of dialysis, I was defiant and challenged myself to continue to live life as if I was healthy and wasn’t spending 4-5 hours every other day being tortured.  I was not going to give up.  Perhaps, during those times, the struggle was tangible.  I had something in front of me to deal with directly.  I had timelines and goals.  Relearning what once were simple tasks, allowed me to take heart in seeing progress.  I feel none of that promise anymore and I do not know what to do.  This is like trying to fight my own shadow.  How do people turn this around?  It does not seem possible?

I want to thank the few folks out there who know that I am in a dark place and have reached out to offer support (I hope you know who you are).  It means more to me than I can ever express.  I also want to apologize for being a burden.  I would not have made it this far without you.  I do not wish to push my problems onto anyone and would rather be a positive part of your lives.  I’m just unsure of how to get there.  

Lush and Green

A new start. Isn’t that what we all are always asking for? I’m always screwing up all of my grand plans. Time to begin again. Too often the reminder comes from another’s end. It’s that reminder of mortality that shocks my mind into realizing that I waste all of my time and achieve none of my goals.


I’ve always envied those who believe in an afterlife. I never have. Not as a young toddler. Not now as a jaded and tired adult. It sure would make things easier to handle - believing that this is just a stopover before some sort of paradise. Of course, since I have not been blessed with an all consuming faith, I will instead apparently be headed towards a torturous eternity. Or so I’ve been warned. I don’t care. I don’t pay any attention anymore.

How does one ‘move on’ from a loved one’s passing? I sure haven’t figured it out. Are we supposed to? Why is it that I can feel guilty when I’m not completely absorbed in sorrow for those who are not here anymore?

I contemplate these thoughts as I stop on a small dusty platform that has formed alongside the steep pathway that has been forged over years of hikers passing quietly through this forest. A partially exposed tree root the size of my leg keeps the crackled hard pan level. I can feel my heart pound and my accelerated breathing dries my throat. Sweat drips from my temples and coats my exposed arms. I never remember the ground getting so dry when I grew up near here. Now, that I’m a tourist, it’s always sunny and warm. I take a deep breath as I try to restart my stiffening legs and return to the uphill trek. Not much farther to the top. Dust rises as I shuffle my feet to regain momentum and get back to stepping up the pathway.

Once I reach mostly level ground along the pathway, the trail widens and the surroundings become greener.  I can see the sky and some clouds have partially obscured the bright sun.  A sign post marks the name of the trail I walk along.  It portrays a sketchy map of the remainder of the trail that ends in grasslands high over the ocean, but I only know that from experience.  The lines on the map don’t really tell me anything.  A crinkly pile of paper snagged together by a dangling clipboard waves in the freshening breeze displaying guest sign in sheets.  I glance through the handful of names written down in varying styles of handwriting.  There have been visitors on this very day from as far away as Germany, Japan and Australia.  I wonder how they knew about this place.  I lived less than 10 miles from here as a kid and didn’t know about it until I hung out with a school chum whose family lived nearby.  Most of the people who have signed are from the northwest.  If I were to visit Australia, I wouldn’t know about anything there.  My only accumulated knowledge is from Men at Work and Midnight Oil lyrics in the 80s and some of those local flavor pieces on the NBC Sydney Olympics coverage in 2000.  The ones I would generally avoid by flipping to other channels.  Oh and how could I forget those Australian Toaster Biscuit ads?  I grab the carved wooden pencil that is attached to the clipboard with a white string.  I scratch out: “OZZY” and “HELL” on the lines next to “NAME” and “FROM.”  This is what I have always done when visiting this place, ever since my 5^th grade class wandered through here with my hippie teacher in search of deer scat.  The humor long ago wore off, but I remain intent on keeping up traditions.

I kiss the wind and make the rain

Jealous enough to fall for days

I fall on you when I hear thunder

I kiss the ground you lie under

Moving on ahead, I notice that the firs are starting to become taller again, and the shadows grow into a severe darkness. The horizon in front of me disappears as the trail begins another upward trajectory. I am completely exhausted. It’s difficult to believe that this trail used to be so easy to traverse. Only one more steep stretch and then the ocean will become audible, the towering trees will end abruptly, and daylight will be regained.

To my left I see the small river widen far below as it merges with the oncoming ocean. Just past it is the inviting beach. That beach will always signify the last time I truly understood the innocence of childhood play. It was there where a few of my friends and I were on the precipice of adulthood and the push to do adult things and become responsible, but shrugged off the pressure and played like 8 year old boys. That beach is perfectly framed between two trees poking up from below me. This is the place. I carefully step off the narrow pathway created by countless footfalls smashing down the long grasses that would otherwise be blowing in synchronized dances with the wind. I continue off the trail and slightly downhill until I feel like it’s no longer safe. I sit down on a piece of what looks like driftwood, but cannot imagine that it drifted all the way up here. Sitting below the level of the grasses and small shrubs mutes the roaring of the violence of the sea crashes into the rocks several hundred feet straight down. From here, I know only the most keenly aware passersby will be able to detect my presence. I am, after all, not supposed to stray from the trail.

Now I only sleep when spoken to

So I'll lay here still in morning dew

Drink up with the flowers and trees

Above you all is lush and green

I contemplate what this place means to me. It does not evoke memories of my mom. It is supposed to. This is where she wanted her remains to be placed. I never realized how much this place meant to her. To me, it will always evoke thoughts of running around at dusk with 25 grade school classmates playing what seemed like the most majestic and grand game of Capture the Flag in history. It reminds me of eating beef jerky for the first time. It reminds me of my experiences with my childhood friends. I don’t associate this place with her at all. Guilt wells up inside me. This has always been the problem. When she got sick, I was away at college. When I returned home, I was never fully there. I had spent most of my teenage years dreaming of escaping and finding my feet in a new life – a life built around my passions somewhere else. My small taste of freedom was still fresh and I wanted to go back. I had started to build a new group of friends. I thought that I had finally found love. I thought that I was finally building a foundation for my future. Then I found myself back at home, stuck there recovering from surgery, while trying to handle watching my mom wither away. I was selfishly strongly aware that what she was going through was likely what I would have to deal with sooner or later. It felt sooner as I struggled to recover from a disastrous month long hospital stay. The biggest difference is that despite my battle, I did eventually start to feel my strength return, while she continued to decline. As I felt better, I began to pull away again toward the pull of life. I will never forgive myself for this. I was at home to help, but I wasn’t there at all.

My thoughts are interrupted from the sound of muffled voices coming from the trail above. I stay completely still, as if they might’ve heard the thoughts swirling around in my giant head. I think that I hear Australian accents. I smile to myself, because I’ve always enjoyed many of the Australian accents I’ve heard over the years. Australians always sound enthusiastic. They get me fired up. This may have everything to do with most of those voices coming from television, where people are trained to sound excited about everything they do. I wonder what my life would be like if I never went back to my home, but instead headed to some warm white beaches along a coast of Australia somewhere.

The voices fall out of earshot. I return my gaze towards the wildflowers and the waterway they look down upon. I don’t know when I’ll be back here. At the rate I’m going I may not be able to make this trek without aid. Why is it that I only decided to return here when the sickness returned?

 

Now I kissed the wind and made the rain

Jealous and it'll fall for days

And I drink up with these flowers and trees

And I still love you

All is lush and green

Above you all is lush and green

*Lyrics and Title provided by Grandpaboy, or Winthrope Marion Purcival V, or Paul Westerberg, 1997



Sinking or 'Grease' is the Word

This is the second to last 'kidney journal' entry, before I gave it up for good.  What amazes me most about reading through these again after so many years, is how far technolgy has come in 9 short years.  So many things I reference in here were outdated long ago.  Forgotten relics.  Some things never change though, and that is my dislike of that guy in "Grease."

Friday, August 15, 2003.



Ever since beginning dialysis, I started watching a lot more television. Not that I already wasn’t glued to the set for more hours a day than I would ever want to admit throughout my life, but now, it’s not comparable. It started with the addition of two new Law and Order spinoffs. Throughout the 90s, I only had one show that I felt compelled to tune into each week and that was the original Law and Order. I got hooked on it when my Mom and I watched a few episodes of the first season together before she passed away. Now there are three of them to keep tabs on! Since I am now tired, weak, and sedentary from being sick, and slowly working my way to stuffed animal status, I see lots of TV at home every evening in addition to the four or so hours of barely interrupted time during dialysis. Currently, at dialysis I have figured out how to watch four straight episodes of Perry Mason on three different channels during my stint. If I tire of the courtroom drama, I can always watch the eight episodes of M.A.S.H. that are spanned across two different channels. During the evenings, I have started watching the two CSI: shows and I love the new show Boomtown and especially the new version of Dragnet with the Married with Children guy. I actually get frustrated when they schedule “my” shows against each other. It really is disgusting. But now that it’s been summer re-runs for some time, I have been left with nothing, because I have seen all of the episodes already. Life becomes empty when it’s based on a TV schedule. That’s how I wind up watching Debbie Travis’ home improvement show Facelift late at night, when I could care less about that shit.

The other evening, I was tuning in to watch TNT’s nightly run of old Law and Order episodes hoping to see one where I don’t remember the outcome. This night, however, TNT decided to show the old musical Grease. I have seen Grease many times, but found myself excited to see it again anyway. The thing that I noticed about the movie that I had never noticed before, and I’m sure that it had everything to do with these new (to me) surround sound TVs and the weird sound separation that they seem to create - every time a song scene came on during the storyline of the movie, the vocals sounded as though they were being piped in from a giant hangar or spacious old train station. The vocals echoed at me as if Olivia was singing into a toilet paper tube from behind me. The reverb was downright silly. Unfortunately, every time I’ve watched Grease, I am reminded of my dislike for one of the extras. It’s a guy that’s in most of the song and dance sequences and he bugs the living shit out of me. He’s the one near the end of the movie, during that closing song (wompa lamma lamma ding dong?), who is wearing a light green short sleeve shirt and tan pants. He does a Groucho Marx inspired dance for a moment. Next time you run across it, and that’s really the only way anyone watches this movie, you’ll see who I’m talking about. At first, you’ll say to yourself, “that’s funny that Chris doesn’t like this guy.” Then, the next time you run across the movie, and you will, you will begin to see this guy running about throughout the entire movie, like during the “Grease Lightning” scene, and during the entire dance contest stretch, and even during the “Summer Lovin’” extravaganza near the beginning. I do not know why his presence irritates me so much, but even as an eight or nine year old watching that film for the first time, he made me angry. Every time I see him, I want to turn away. I threaten to hunt him down and torture him the way he has tortured me for years. Yes, I talk to the TV. And, no, I wouldn’t want to hunt him down.

After watching Grease, and running the gamut of practicing my “hickey from Kenickie” impersonation, my terrible Travolta singing, and trying to avert my eyes from the evil extra, later that night I came across the pilot movie for Hawaii Five-O. This is the first episode of one of the best shows ever and I had never seen it before! The pilot has a different Danno. This Danno chain smokes and doesn’t have that weird hair or the childlike run, and the dialog is more free and intriguing. Plus the pilot introduces us to the dreaded Red China agent Wo Fat, and of course, Steve McGarrett – the Lord, Jack Lord. We get to see the blue suit, his freakish skeletal face, and that hair. We get to hear him tell Danno to “BOOK ‘EM” for the first time as he arrests CIA agents just for being a nuisance to him. McGarrett commands and coerces people who are supposed to hold more power than him, though we all know better. There is nothing else quite like this show. There is nothing quite like wasting one’s life away by watching television all hours of the day and night. It’s no wonder I can’t sleep anymore.

The Baby Screams

This is an odd post.  The next entry in the 'waiting for the tranplant' journal of 2003 found me delving into more details of the reality that is being a dialysis patient.  One might think it would be a great time to reflect.  And for someone who finds writing therapeutic and conscious clearing, it would be a great time to write.  How many people get 4-5 hours of blank time 3 days a week?  Unfortunately, it is nearly impossible to do anything.  In reality, it is a time to tune out.  For the most part, I kept this world to myself.  I rarely shared stories and discouraged visitors after the first few months as a patient.  However, I did write a few bits and pieces about dialysis and I have already swiped this particular entry for this very blog a few years ago. 

This actually works out well considering that this is the eve of a National holiday.  It's a re-run!

The Tuesday, August 12, 2003 journal entry can be found here.

A Hand Inside My Mouth

For the past week or so I have been completely without energy.  My body has felt sluggish.  My limbs have felt heavy and difficult to drag around.  I do not know why, and considering my history, I should probably contact my doctor.  The feeling has reminded me of my days as a dialysis patient.  For three years, like many, I struggled mightily through this method of staying alive.  I wanted to remind myself what it was really like, because I shouldn't throw around such bold statements about my current condition now so far removed from what was the worst period of my life.  After the first day I found out from my nephrologist that I may one day get a transplant, I started to write down occasional thoughts of my experience (and I mean occasional).  Over the next couple of weeks, I plan to be incredibly self-indulgent and post these writings.  To share more of my neurotic inner dialog and to remember how much happier and healthier I am now.  Thinking back now, I realize that even though I am not feeling that well physically at the moment, it was and can be so much worse.

Here is the first entry:

Friday, January 10, 2003.
I’ve been cleared for a transplant! Great. What now? What does this mean?

The last 14 months have been completely dictated by my dialysis schedule. Three days a week – close to five hours each session. It’s all I know now.

They tell me that my body is 100% clear of cancer cells. That it’s been well over a year since the tumors have been removed and that they now believe that they got all of it – that the cancer must’ve been contained inside the kidneys they removed. They tell me that a living donor is the best option, because a cadaver kidney generally only lasts half as long as a living donor one.

How the hell does one go about finding a living donor? I don’t remember seeing any ads in the paper for people needing kidneys, nor ones for people offering their organs for usage. Sure, I’ve had several good friends tell me that they would be willing to give me one of their kidneys when the time came. Well, that time is supposedly here. The time is now. I am so fucking sick of dialysis that I can barely take it anymore. I am so sick of being sick, but how does one collect on such lofty and generous offerings?

“Hey, uh, dude! Hey man, what’s going on? How are you feeling? You feeling pretty healthy these days? Good. Good. So glad to hear it. Uh, do you think you could take six weeks or so off from work? Um, you feel like having a kidney removed? I can tell you from personal experience that the surgery is pretty damn painful. It shuts down your body. But hey, you’ll get to experience the joys of catheter usage and you’ve been talking about how much you’d like to get away and get some rest. Well, I cannot guarantee a lot of actual productive sleep, but you’ll have to lie around a lot.”

How does one come to someone that you care dearly for and ask them to go through that? I don’t think I could ever ask for such a favor. Yet, at the same time, I am dead set on getting a transplant now! I am so ready to stop dialysis - to stop the constant itching and total discomfort. I so want to be free of the sore muscles, constant fatigue and heavy limbs. And the diet and fluid restrictions! Don’t get me started on those. Eating food, especially food with any sign of nutrients and/or flavor, is strictly prohibited because it acts like poison in the body when you are without kidneys. The same goes with drinking any beverage.

Dialysis keeps me alive and for that I am thankful. However, there is the sense that living is all I am doing. Many of my fellow patients sit in their chairs during dialysis sessions completely immobile, staring blankly ahead. There may as well be a stuffed animal sitting in the chair instead. This disturbs me, because I too often find myself devoid of thought and focused on nothing. This lack of productivity weighs heavily on me. Do I offer anything to anyone anymore? Did I ever? Besides being a constant hassle to my giving friends and family by requesting rides to and from dialysis, because I am too frail and weak to handle the trip on my own, I don’t provide much else. I still consume shit, but I don’t really do that the way I want, how I want, or when I want. The cost of my care alone is astronomical. Am I worth it? Am I worth it, if I provide nothing to anyone or anything? Plus I am constantly whining about my situation! Who wants to hear it anymore? I know I don’t, but it’s all I have. My complaints are a sign of the only fight I have left. This is why a transplant is necessary. I need to regain some semblance of my life as it was. Certainly, I will never take a clean bill of health for granted again.

What the hell to do?

Now, the next adventure begins. I have a small lease on life again, because I have been cleared for a transplant. There may be a light at the end of the long tunnel. I may once again taste the freedom that life can offer one day - when or how or if this will happen seems abstract to me though.

Bad Dreams

For three years I was a kidney hemodialysis patient, before thankfully receiving a transplant. It is a period of my life that I remember and can speak about in emotionless terms, because I have moved on. It is best not to think of how terrible it was, or how close I came to not surviving it. The memories of that time rarely haunt me at all. Last night was an exception. I have always had vivid dreams. A few years ago, during a sleep study, I found out that I never came close to entering the deepest stages of sleep, which means that my mind is active through the night. I generally wake easily and often during the night, and in the morning find myself more exhausted than when I went to bed. It's cool to have an exciting and memorable dream life (mostly), but sometimes it really wears me out. Last night, is one of those times. I spent much of the night dreaming about my experiences with dialysis; reliving the pain and the sickness. I decided to get up and confront these moments. I pulled out some writing I did during those years and read through my thoughts as it was happening. Much of it was surprisingly funny and focused on my singular focus of trying to get myself a transplant and my paranoia of missing the call, once I made the transplant list. Very little was about dialysis itself. Here is an excerpt of something I did write during a day off:


It was one of those days at dialysis yesterday afternoon. Luckily, I was spared all of the tragedy, save for having to witness the disasters that were going on around me. The old woman in the corner with the bald spot took a spill last week. She literally missed the chair when sitting down. She mumbled to me a few days later, as she gimped by, that she had broken her pelvic bone from the fall. I felt bad for her; however, if she didn’t always act like such a tortured soul, I would feel worse for her. When she talks to me, she talks with some sort of failing voice and a look of pain. It is misery being at dialysis. Everyone there has to deal with it. I don’t know why she talks to me anyway, because she cannot hear a thing. If I even bother to respond, she won’t hear or understand what I’m saying. I just resort to shrugs and nods while contorting my face in various ways. Today it was time for her to lose a needle. If you don’t know anything about dialysis, all you need to know for this story is that the technicians stick two large needles into the patient’s arm or leg (repeated approximately 312 times a year). They stick these needles into either a fistula (a surgically combined artery and vein) or a graft (an artificially lined vein and artery), in order to remove blood from your body and, after the dialysis machine performs its secret magic, it pumps the blood back into your arm all fresh and clean (“so fresh and so clean clean”). When a needle comes out, pressure needs to be held against the fistula or graft in order to clot the blood, otherwise blood will literally spray across the room like a pump action squirt gun, or like one of those sprinklers that is a flat strip full of holes. Her needle came out accidentally. Blood was soon everywhere and the nurse and the techs had to rush to stop the bleeding and to clean up the mess. The old woman is so tiny, that any loss of blood must drop her blood pressure to unreadable levels. Her little white sweater, which she wears even when the summer temperatures reach 100 degrees, was saturated and she had spatter all over her face. She will blame the staff for this disaster as she did when she whiffed on the chair the week prior. She will show me her sad face next session.

Meanwhile, during the blood incident, the old man next to me, who sits hunched in his chair shaking, yet never uttering a sound or changing his completely blank expression suddenly blurted out a cry for help. This shriveled old man wears a giant baseball hat - the kind with the huge bill and the foam stuffed bridge like The Clash’s Mick Jones used to wear - was cramping. You see, the dialysis process removes fluid from your body, since failed or missing kids take away a person’s ability to piss. Because this process is done over a three to four hour period three days a week, too much fluid taken off too quickly can cause severe cramping in all parts of the body’s muscles. The old blank man lost his hat from the violence of the cramping. Then a patient across the way joined in with the cramping, and then another. The nurse and techs were running around trying to take care of everyone at the same time. It was near total chaos. I was fine. I was listening to music on my disc-man trying to ignore the suffering. I couldn’t ignore it. It is everywhere in that place. Suffering is in the air that you breathe.

No one ever talks about missing patients. You spend three days a week, every week, with the same people, until someone simply stops showing up. It could be that they received a much sought after transplant. It could be that they moved away, or are on a trip, or it could be that they’ve died. The patients have no memory. It is the only way to survive the ordeal of each session. If last session ended in a blood bath, as the old bald woman’s did, next time, she’d better not remember that incident. She will though, and that is why she suffers so badly.


There is another piece that I wrote while going through a session. It was a letter that I never sent, because it was so bitter and so angry. Having been forced into dialysis because of a genetic syndrome that ravaged my kidneys with cancerous tumors, I was there because I had my kidneys removed to survive. Otherwise, the cancer would have spread up the renal vein and into my lungs and spine and then, well, it would not have been good. So many of my fellow patients were there, because of adult onset, rampant diabetes, brought about by horrible diets and extreme obesity. In most of those cases, they could have avoided dialysis simply by living a healthier lifestyle, but what ate at my gut during those days was the fact that they continued to eat a normal diet and drink fluids excessively (a dialysis diet essentially means you need to avoid any food rich in nutrients, as well as the normal unhealthy stuff and pretty much any fluid). They were killing themselves, while the rest of us were fighting to survive and make the best of our horrific situation. Here is an example of how resentful I would sometimes get:


Every other day it's the same shit. Surrounded by suffering. Surrounded by pain. The air smells like vinegar. Most people suffer in quiet - putting on a brave face - maybe genuinely believing that there is hope - that one day this routine will change. For most of them, the only change will be further disintegration and death. The rest of them are the ones who put themselves here through their rampant consumerism. They all have the same chances, but they don't deserve the hope. They cruise in on their rascals loaded with snacks and gallon sized plastic cups from some mini mart. They bring boxes of donuts and bags of chipsssss. Sometimes they bring steaming shit in microwavable containers, so they can shovel the contents into their fat pale faces with their bare hands. They are here for only one reason. They are not justified for sympathy. I hate them all. I hate having to see their puke and hear their complaints as they receive all of the attention of those caring for us.


Okay, I think it's now out of my system. Time to move on again. Thank you for the indulgence.