Here's Where the Story Ends

“Please strip down to your underwear and put on this gown,” the lovely young nurse’s assistant stated flatly as she swung the curtain closed at the foot of the hospital bed.  “Put your clothes in this bag,” she added.

I sat on the side of the bed and flung my new slip on shoes into the wall near where I had left my cane.  I began to wonder if I should put the cane somewhere else, as I suddenly became fearful that I would lose it here. I balled up my wet socks and stuck them into one of the shoes.  My feet had already been drenched with sweat, despite only having them on for the previous half hour or so.  It was inside-oven-hot outside, even though it was only mid-April and only mid-morning.  Plus, for some unknown reason, I have been retaining fluid like I was still a dialysis patient.  My ankles looked like an elephant’s. 

I attempted to fold my pants and shirt, but my left hand was not cooperating.  Ever since the stroke last Halloween, there has been no signs of improvement on that front.  I actually do practice my Occupational Therapy exercises nearly every day, but to no avail.  My fingers fumbled around behind my neck in a feeble attempt to tie the tiny back side open gown.  My left thumb seemed to dart back and forth of its own accord, getting in the way from the simple task of securing the gown.  I started to sense sighs and impatience from the outside of the curtain as I struggled unsuccessfully in the shadows, so I stretched my right arm out to pull the curtain open and requested help.

“You can tie the gown first and put it over your head,” the nursing student was clearly exasperated as she moved in behind me and pulled the strings quickly into a knot.

“Good idea!  Wish I‘d thought of that,” I responded.  I still cannot tie a knot!

“Lie down on the bed,” she commanded as she walked around the bed to the computer terminal, whose keyboard hovered over my left shoulder.  She placed a brand new, apparently disposable blood pressure cuff onto my left arm and asked me to state my name and date of birth, as the cuff automatically began to squeeze my formerly fistula’d left arm so tight I could feel my pulse pounding in my ears.

I looked up at the nursing assistant who was leaning over me with a stethoscope listening to my heart and lungs.  She was likely half my age.  How did I get so old?  It wasn't that long ago that I remember so vividly coming to after my first surgery and seeing a smiling nurse leaning over me, looking like a Madonna Wanna-Be.  I closed my eyes and concentrated on the hum of the air ventilation system and the hushed voices coming from the five other beds filled with people either returning from or preparing for an endoscopic ultrasound like I was.

“Please state your name and date of birth,” came the startling voice of the nurse, who was running this little wing of the old hospital.  She had replaced the young girl who was now observing from the foot of the bed.  “Have you been out of the country in the last thirty days? Have you been in contact with someone who has been out of the country in the last thirty days?”

I felt a few quick slaps on the crook of my right arm.  Another nurse was preparing to insert an IV needle.  She studied my arm closely.  Holding it upright by my hand and smacking it in different places.

“Why are you here today?”

Beep.  The nurse on my left stretched her laser gun across my gut to scan the barcode on my right wrist which I dutifully held aloft.

Slap slap slap.

“Have you ever had this procedure done before?”

Slap slap thud.

My limp arm fell back to my side.  I could a hear a few strips of tape being pulled and ripped and stuck onto the bed’s railing. 

“Have you had any recent hospitalizations?”

“Ready for a poke!”

The poke reminded me of the sudden stabs by the massive dialysis needles they used to slide into my arm three times a week.  Not like the mild sting from the labs I had drawn the two previous days.

“I see you’ve been on dialysis; did you get a transplant?”

“Hmmm.  I’m not getting anything.”

She slowly moved the needle around in a search for my vein.  The poor vein all of the needles are initially aimed for.  It’s no wonder it rolls away from any sign of danger.

Snap!  The nurse undid the bright orange rubber band she had used to tighten around my arm.

“Hi, I’m Doctor Brintha, I will be doing your procedure today.  Please tell me your name and date of birth.”

Slap slap slap.  The nurse began smacking the back of my right hand.

“Have you ever had an endoscopy before?”

“These all look like valves to me!”

“Have you or someone you’ve been in contact with been out of the country in the last thirty days?”

“A little poke!”

An intense burning sensation radiated through my hand.  I opened my eyes a little and looked at the nurse moving the needle around the back of my hand.  No blood was appearing in the tiny tube on the opposite end of the needle, which felt like molten lava being spread evenly onto my hand with a butter knife.

“So, the procedure will take about an hour…”

I closed my eyes again.

“Can you cup your hand?”

“We will spray some nasty tasting goo into your throat…”

“There it is!  Hold your hand still!”

“It will numb your throat, but you may still have a sore throat afterwards.”

“Can you keep your hand in that position?” the nurse asked as she taped the IV needle in place.

“We will be looking at your pancreas.  There are some cysts in there…”

“There you go.”

“If anything looks odd, I will take a biopsy.”

The voices began to fade away.  I felt completely empty – devoid of emotion.  I started to think about an early teenage crush I once had and how I felt sick to my stomach all of the time – not just when she was around – but all the time.  Oddly, not so different from how I felt at that moment.  I wondered if this would be the last of this hospital shit for a while, or just the beginning of another long stint.  Like that long ago crush, I somehow knew that nothing good was going to come from this.  

Soul Mining

Almost six years ago, I wrote the message below to a new friend.  We were both people struggling through a difficult time and we connected via our respective health issues.  For a short period of time, I’d like to think we helped each other out.  Currently, I am struggling through a similarly dark stretch of health concerns with lots of questions and uncertainty, with no answers on the horizon.  I ran across this today while deleting and/or backing up old files on my computer.  It seemed a fitting tribute to all of my friends and family and how huge of a debt I owe each and every one of them. 

Thank you.

Sometimes I wonder why I do it – why any of us do it.  I've never believed in any kind of bigger picture, or been spiritual in any way.  When it comes to life and its meaning, I don't have any answers and I often wonder what the point of it all is.  These questions always arise when I have to deal with health problems, especially while I was a kidney dialysis patient.  During those three years I contributed nothing worthwhile to society, nor did I enjoy any aspect of it.  At best I was a burden to my friends and family.  I couldn't work very much, nor do anything creative, plus I was a serious expense and burden.  To this day I wonder why I fought so hard to survive, only to end up cold, isolated, and loaded with guilt and regrets.  Yet, there are still those moments - those times when you are able to forget, because your friends rally and fill you with a sense of belonging and love.  Occasionally, there are those times when you can help someone out with advice or comfort that provides a sense of purpose.  Sometimes there are moments or situations where you may encounter someone, when you least expect it, who will change your life.  Maybe none of the big questions get answered, but at least you can feel good about being around, if only for a few moments.  

(02/11/07)

Scared To Get Happy

For as long as I’ve had to deal with having a genetic disorder (VHL – or Von Hippel-Lindau), which wreaks havoc on the body, I have occasionally had people kindly tell me that I’m so brave or strong. It is a strange thing to hear. Like most people, taking compliments is much more difficult than giving them, but I have never felt brave or strong. I have never felt like I’ve handled it well, especially as the problems became more intense over time. People have sometimes asked me how I have managed to get through these times. My answer has never wavered. I have always felt like I have survived the problem like most people deal with any personal or family crisis. What does one do when they lose a loved one, or break their leg in a car accident, or struggle with chronic migraines, or whatever the worst thing that happens to them may be? They find a way to cope and to persevere. I never felt like my issues were any more tragic or severe than anyone else’s. It is simply a different crisis.

However, it is the ongoing nature of the VHL syndrome that I do not feel like I have dealt with very well. The older I get, the more I realize and lament how I have allowed it to control me, instead of me taking charge of it. Sure, I’ve mostly kept on top of my continuing annual scans that monitor the kidneys, pancreas, the brain and the spinal cord, as I promised my mom I always would not long before she passed away from this disorder. I have kept my regular appointments with my specialist doctors to check hearing and to make sure my retinas stay clear of tumors. I ask all of the questions that need to be asked about improving my health and what I need to do to manage symptoms and prevent emergencies that could result. I have done this with little question like a programmed robot over the last 28 years and will continue to, despite being absolutely sick to death of visiting doctor’s offices and being filled with radiation and poisonous contrasts from these scans. What I haven’t done well, is deal with it emotionally. When it has come time to go in for some awful surgery, I have always gone into some sort of zone where I feel almost nothing inside. Sure I feel the aches and pains from the procedures, but I go through these events as if I’m doing a job that I don’t really care for. It is just something that needs to be taken care of before I punch out for the day. I have also let these momentary life halting occurrences truly stop my life. So much so, that I have ended many really good things in my life, like a burgeoning relationship, or a great chance to intern at a highly regarded professional recording studio, just to go take care of the latest disaster. But I never go back to a life with growing potential; instead I go back to life in the daily grind and forgo those potential dreams ignoring the previous achievements and strides. The older I get, the clearer this has become to me. When I hear someone say that I’m courageous, it only reminds me of the coward that I truly am.

I am trying to examine the reasons behind this, and it has become more and more apparent that I need to change this pattern – a pattern that has become such a part of me, that I struggle to see it until after I sabotage myself. There’s no way to know how my life or my level of satisfaction with life would be different, if I had returned to school after each time I had to take time off, or if I had attempted to keep friendships and relationships alive through these bypasses. However, it’s the idea that I have allowed opportunities to go by the wayside that has often filled me with regret and sadness. There’s a biting feeling that I am always missing something, especially since I am not very happy with many aspects of my life. I am unhappy and uninspired with my work; I live alone, struggle each month to get by financially and I don’t feel like my life is heading in a direction that will change this course. I do try to make changes as my frustration grows and sometimes I find temporary relief, but in the end, I never feel like I’ve gained any ground. I truly believe that this feeling of futility stems from my habit of starting from scratch each and every time my body decides to go haywire. I have allowed my health issues to control my life so much that I have not ever dedicated myself to long term goals, always waiting (as an excuse) for the foot to drop so I can stop whatever progress I’m making and go back to my life in medical institutions, where someone else can take care of me. I decided as a 13 year old that I would never have kids of my own, based on the genetic aspect of VHL, and not surprisingly, this kind of stern decision has affected my ability to find loving companionship and to maintain them. It’s as though I’ve become afraid of success, because I’m afraid that this disorder will someday take it away, so instead I subconsciously choose to live with mediocrity – a place I may well have found myself in no matter what paths I’ve chosen along the way – but it feels like I’ve taken the coward's way out.

All of this self examination has become stronger than usual of late as a small health scare hit me within the last few weeks, which coincided with me developing a major crush on a woman who I was lucky enough to meet and get to know a short time before. It has all felt eerily reminiscent of last summer (see previous posts Fear of the Weather and Numb) when I felt mysteriously physically terrible, while pining for my doctor’s receptionist (who I still see on a regular basis as my appointments and tests increase with these new issues). It took this latest development to notice that nearly every time in my life that I have had a downward change in my health status, from the very serious (dangerous brain surgery to losing my kidneys) to the much smaller issues that can be dealt with through therapies or medication changes, that I have attached my hopes and dreams to the ideal of some unsuspecting woman who I find very appealing at the time. I’m certain that those women have been a distraction to avert my focus from my fear of the unknown my tenuous health status creates, and they represent what I feel I am missing when I am set to confront those fears – companionship and support, but it has yet to go well. It is no surprise to me that these advances have all failed. Besides being pretty unappealing in general, my history of trying to win over women have most frequently happened when I have been desperate and scared and even more unappealing than usual. Again, I am allowing my health problems to dictate a path toward failure or mediocrity or loneliness or unhappiness. However, one would want to look at it. My hope is that recognizing this self destructive direction is a sign that maybe I can start to make more positive decisions and maybe for once start seriously planning for a future.

It is almost time for the LPGA to return to Portland, along with the vacation that I take to allow full immersion into that world. Maybe it’s time to take myself seriously and start introducing myself to the right people and make an effort to be the Admiral of Awesomeness that I know I can be. It’s time to dream again and to stop allowing myself to give up so easily.

The Greatest Story Ever Told

“I was frustrated and angry”

Sometimes a band and/or an album come along at the perfect time. When I was spending three years strapped into a dialysis chair for three days a week for four to five hours at a time there wasn’t a lot to look forward to each day outside of trying to make it through a work day and surviving. One might think with all that downtime at dialysis, I could at least get in a lot of reading, listen to a ton of music and maybe even write. One might think that, but for the most part those years are blank. I pretty much lost my fanatical taste and exuberance for music, I did read my way through many sleepless, restless nights, but couldn’t focus while going through those awful sessions. There are a few exceptions. Every once in a while an album or a song would come along to breathe new life into my waning soul. It was at a 2002 summer time Dillinger Four show (a rough and tumble Minneapolis punk band, who I discovered in the late 90s through another Allied Records punk compilation Invasion of the Indie Snatchers in my constant search for a new punk rock band to replace Husker Du, then Jawbreaker and J Church, then V Card, etc. in my weird little lexicon – see the prior two posts Ache and Letter to Hope), when opening act the Lawrence Arms cranked out the soaring and heartfelt “Nebraska” and blew my friend Jeff and I away. Initially, during their set, we exchanged accepting glances, because we were surprised to find an opening act we’d never heard of, earning our jaded attention. It was when we heard memorable lines from “Nebraska” like “your sarcasm radiates unhappiness / so withdrawn and rooted deep inside” over a dry repetitive guitar pluck, before exploding into an earnest desire to help a depressed friend (“your bitterness doesn’t surprise me / as these pointless days go screaming by / rejected sour eyes / can’t imagine blue skies / I wish you could find something to live for / besides the agony of bleeding towards this last breath”) that completely won us over. It was those understanding words that I needed to hear during a time when I felt sick and weak all of the time and wasn’t sure if I would ever get an opportunity for a kidney transplant. It was hearing those words coming from a self deprecating loose punk band that made it seem somehow more poignant.

Nebraska live 2009

The Lawrence Arms are (or were) a punk rock trio from Chicago, who have released five albums along with a couple of split albums, singles and a ton of punk compilation tracks (so far between 1999 and 2009). I love every single one of them. However, it was their 2003 fourth album, The Greatest Story Ever Told, which stands as their high point both creatively and for me personally. It is also their most overlooked. It’s one of those album albums. Most of the songs connect together and reference each other creating a big picture theme. In other words, it’s not the type of album where it’s easy to pull out a song or two for mixes to share, nor is it easy to listen to just one song. It is an experience. It isn’t a bloated double or triple album mess. It is concise at just over 30 minutes and stays true to their roots – roots that land firmly in the long standing sensibilities of Midwestern punk rock. Their hard partying tales of ineptitude and debauchery provide a picture perfect postcard into the life of the disaffected and downtrodden in an insightful and an alternately blunt and poetic way. This album is brilliant at mixing odd pop cultural references with literary masterpieces into a cohesive message of frustration and anger (there are mentions of Juggalos and Hot Shots Part Deux slipped in between references of Mikhail Bulgakov’s The Master and the Margarita, painter Elhajiman Young, writers J.D. Salinger, Tobias Jeg and Gustav Meyrink among others – and yes, there are actually footnotes for the lyrics!). It is that message of frustration and anger and feelings of helplessness that I not only identified with during those dialysis sickness years, but fed off of. Their music and this album inspired me and filled me with an energy that I had forgotten I was capable of. It was the 2003 holy trinity of albums spewing social and political outrage TSOL’s Divided We Stand, Killing Joke’s second self-titled masterpiece along with this, The Greatest Story Ever Told, that helped me find my outrage and verve and passion for music and life again. It became impossible for me to listen to a song like “Alert the Audience” and ever feel sorry for myself, while reclining in the pleather dialysis chair, hearing bassist Brendan Kelly’s raspy voice shouting at me in my headphones during the shredding climax of the song:

“I’m a clown and I’m choking on blood, teeth and tongue

Fuck the spectators. Fuck the ‘he was so young’

Fuck forced sympathy through lifeless glass eyes

Povichian voyeurs drinking my cries

Fuck faced trilobites waiting to die

I can’t stand the humor, and I can’t stand the lies”

Instead I became instilled with a desire to take back control of my failing health and fight to overcome or at least fail trying my hardest to make a difference, while scratching to survive.

“I’m a clown, we’re only here to entertain” is the thematic link that spreads throughout this album, starting with the ‘Hobo Clown Chorus’ that acts as the introduction amongst a hacking cough and the sound of a beer can opening. Could it be a statement of dissatisfaction and disaffection from the faceless masses (the 99%) who help earn fortunes and glory for the few and are left with little recognition and reward? I think so (“Tear us up and stuff us down the drain” is the Hobo Clown Chorus’ concluding outro). Fittingly, the incredibly detailed and impressive sleeve art is loaded with old fashioned circus imagery to go with the repeated circus references in the lyrics. From that opening introduction, the album unwinds as guitarist Chris McCaughan and Brendan Kelly alternate the lead on each song. This is an important distinction, because they are two very different sounding vocalists and have very difference styles - Kelly’s more profane lyrics and chaotic bursts of noise pair perfectly with McCaughan’s more refined punk balladry (whatever that is). I can honestly say that I have no favorite song from this astounding collection that sweeps by too fast to fathom – begging for repeated listening.  I absolutely love this album from beginning to end.

Come to think of it, listening to this album now reminds me that I need to heed the lessons I learned ten years ago. It’s time to stop the slide into lethargy and regain some fire. Isn’t that what rock-n-roll has always been about?

The Disaster March 2003