Hold My Life

 

How do you see your life’s story?  How would you distill your life into a relatively brief synopsis that can accurately encompass all of your experiences, and all of the billions of thoughts that run through your mind throughout a lifetime?  It’s impossible isn’t it?  And yet, all of us repeat stories from our lives over and over, especially as we get older.  I find myself dragging out anecdotes from my six years of volunteering for the LPGA Portland Classic golf tournament all of the time.  I will find a way to shoehorn it into any topic.  Clearly those experiences are important to me, though they are boring fodder to any audience. 

Last night, I was reading through a printed version of the After Visit Summary from my most recent doctor’s appointment.  Generally, these are 2-4 pages, but this one is 32.  There is an entire page devoted to all of my diagnosed ailments.  It is, in a way, my biography, and yet it isn’t.  Sure, my mind flashed back while reading “kidney transplant” on the list.  Wow, was that a time?  That gift of someone’s kidney saved my life.  I still have a lot of guilt and sadness mixed in with my elation about receiving a second chance at life at the age of 33.  And that’s just it.  This list is not my story and I found myself getting upset.  On that list of ailments is “Migraine.”  How did it get on my list?  I have had maybe three migraines in my life!  I have suffered from a variety of headaches for most of my life, but migraines are not what I suffer from.  The list includes “Morbid (severe) obesity due to excess calories.”  Though true, it feels disingenuous.  I gained about eighty pounds after my kidney transplant over the course of about twelve months while on high doses of steroids that were designed to keep my new kidney safe from rejection.  When I received the transplant I was about 140 lbs.  A year later I was about 220 lbs.  I essentially maintained that weight for sixteen years, until I needed steroids again in 2021 when I had severe swelling in my head from a failed attempt at radiation therapy to destroy tumors.  The steroids reduced swelling to make my life tolerable, and they helped me gain another 80 lbs. over a period of five to six weeks.  Yes, I am obese, but it feels unfair to be labeled that way.  There’s no nuance to the story.  I reached300 lbs. and over the last year, with a lot of work, I have lost some of that weight.  At that recent appointment I weighed in at 268.  Way too heavy to the medical assistant who weighed me, but to those following along: “not bad.” 

I hate to criticize my healthcare.  I am overwhelmingly grateful to anyone who wants to take of people.  I admire everyone from the mighty brain surgeon to the cleaning staff at a hospital.  I am grateful for their hard work and care and effort.  I also am aware that records like in the after visit summary need to be cold and clinical.  When passing information from caretaker to caretaker, they don’t need to know my life’s story, but I guess it’s helpful to know that I am indeed morbidly obese.  I understand and have witnessed people trying to explain nuances of their conditions to a medical professional, as that professional tries to distill that information from five minutes of detail to one or two sentences or a code.  I also realize that our lives cannot be coded or simplified in this way.  Our lives are made up of those things that make us who we are.  Those things that are not so straightforward.  We are not keywords or codes for huge insurance companies to decide how your care should be covered or not. 

I was admitted to the hospital over a weekend a couple of weeks ago.  I was experiencing an Atrial Fibrillation (AFib) event while wearing a heart monitor during a Cardiac Rehab session.  I was asymptomatic.  I felt fine, and yet found myself in a hospital for about 48 hours before getting discharged untreated.  No new medications were introduced.  No treatments were provided or planned.  The first morning I was there, the weekend doctor on call at that time came into my room, introduced himself and asked if I was ready to go home.  I giggled and said yes.  He explained that they could perform cardioversion (without explaining what it is), but that I would need to stay over for a few days, and then he told me that millions of people live with AFib and that mine was stable and that I should buy a Kardia Mobile device to monitor my heart rhythm.  Then he left.  My post hospital stay after visit summary explains this interaction shows on record that I refused treatment in favor of going home.  That’s now a part of my history.  It’s no wonder that my insurance has not approved coverage for the entire hospital stay!!

Do I blame this doctor?  Yes, I do.  It’s careless and thoughtless.  I also don’t.  The system is messed up.  He was likely supposed to be well informed enough to be in charge of a lot of patients and all of their histories and to be everything to everyone as fast as possible.  I am often astounded and saddened when I find out that, for example, Abby, my Physical Therapist, sees about twelve different patients a day, or that the Cardiac Rehab team I work with see over 200 active patients a week.  It’s alarming to conceive of this workload, and it’s the entire system!  These wonderful people are overworked and go above and beyond and need help.  So, when I see minor mistakes like the ‘migraine’ mischaracterization, I am quick to forgive. Yet, I feel powerless and frustrated when I notice that my list of medical issues does not include mention of, as an example, my damaged tongue.  During that brain surgery in 2021, I nearly bit my tongue off, because no one put a mouthpiece in place.  My tongue continues to be a health problem.  I now have a lisp and struggle to speak, but more importantly, it’ can be seriously painful when I eat.  It’s been over five years, but apparently it does not merit notice.  It’s frustrating when I go over my medications with my caretakers, because inevitably there are inaccuracies.  Sometimes medications I’ve never heard of land on my list of record and are kept there despite my confusion and protestations, I may later see a note in an after visit summary that “pt. CLAIMS that they don’t take this medication.”  An interpretation such as this paints me as hysterical. 

This leads me to a personal problem I have and it’s been more severe for me over the past three years.  Late in 2022, I made the decision to stop working to focus on improving my health.  After that fateful brain surgery in 2021, I was declining and declining fast.  I had numerous physical ailments as well as some cognitive issues.  Because I had to give up my work sponsored insurance, I had to rebuild a new healthcare team from scratch.  Unfortunately, having Von Hippel-Lindau Syndrome (VHL) merits a care team.  My goal has been to work to improve my health and treat it like a full-time job.  I have had various therapies, medical tests, and checkups nearly every weekday multiple times a day for over two years.  I have always (even as a kid) tried to personally connect with my caretakers.  I want to know them.  I want to know why they are there.  I want to know what makes them who they are.  If I am going to be divulging my ugly secrets, it seems fair that I learn that they may be an avid reader.  I need to know them as people – not as someone getting paid to take care of my broken body.  This has led me to a critical juncture.  It’s at least two fold.  I’ve had to change my insurance again due to unforeseen events and now I may lose a lot of this close and personal care and I have been freaking out.  I have been absolutely panicking, because I feel like all of the hard work I’ve put in building a great care team and toward getting healthier (and finally seeing the benefits – walking without a cane, finally losing some weight, feeling stronger) seems to be slipping away before I am ready.  There’s also the personal side.  I do not want to say goodbye to these people.  They have cared for me and helped me in ways that I cannot begin to describe.  When I was still working and had an active social life, I did not lean on my healthcare team for socialization, but now, they are the ones I chat with about music, movies, shows, books, weird shit that happens, life, and of course, the weather.  These people are now my family, friends, and confidantes.  I do not want to say goodbye.  The practical side, I know that they’ve provided me tools to continue to work on my own, but I will miss them all dearly and it absolutely breaks my heart.  Yet, as stated above, I am still “the patient (pt.).”  I read those after visit notes, where an hour’s worth of random chat is distilled to one or two sentences, like “the pt. CLAIMS his back hurts.”  Because I so want to connect with these people, I forget that they are working and that they have to document the time they spent with me.  It still hurts.  I am only one of those hundreds of patients.  Nothing more. 

This leads me to another conversation I struggle to have.  As I’ve devoted so much of my life to the medical world, I’ve found myself incredibly lonely.  It’s been a lifetime thing.  When VHL was diagnosed in my family, I was thirteen and had no symptoms.  In fact, my first major kidney surgery landed during the middle of my 8^th grade basketball season.  I was amidst puberty and mostly healthy.  After that, I steeled myself against the idea of a future of constant medical attention via periodic scans, checkups, and surgeries.  I made decisions like “I will never have children” that slowly made me believe that I was a burden unworthy of love or any kind of attention.  I felt and still feel like a physical freak and a pain in the ass.  I have taught myself to not allow anyone in to my nightmare, because, well, it’s a nightmare.  I have always wanted to present myself as Teflon.  I have always defined my story as someone who can handle anything that comes my way.  I pride myself on being independent.  I wrote a paper in High School about humility and independence.  I still believe deeply in those things, yet I am finally realizing that I’ve not allowed nurturing and love in my life.  Ever.  It’s been a slow process of self-discovery.  I’ve written previously here as I’ve slowly hit upon some of these revelations like how and why I’ve always struggled to plan for even the near future.  How I have shuttered the notion of dreaming about my future.  I’ve always felt unengaged, and a little jealous, when I hear people’s stories about how they've set a goal and work hard to manifest and achieve that goal.  I do not set goals and do not know how to manifest anything.  Without that planning and dreaming, I have learned to close myself off and it’s lonely.  It’s difficult to write about, because it’s deeply personal stuff I’d rather not admit is real, but it also can offend those who are in my life.  Those who do love me and see me for who I am.  I do not want to short shrift anyone and am often overwhelmed by the love and support I do receive.  It means so much and has kept me motivated to try to stay healthy all of this time.  When I say I feel alone, it’s in that I’m missing out on that personal intimacy.  I do not have a partner – a significant other. It’s different than having a friend check in on me via text message.  Part of shutting down after my VHL diagnosis has had the major side effect of not being able to allow love to blossom in my life.  During my physical therapy sessions over the years, I witness other patients working through their obstacles and challenges alongside their therapist and often with a loved one who is there to champion and cheerlead them on.  The first time I took a step without assistance after that 2021 brain surgery, my therapist clapped her hands and yelled “Yay!” and that was great, but that was it.  When I told a few people afterward about my big triumph, it felt as if I was telling them about those times I volunteered for the LPGA.  YAWN.  I do not have that intimate support.  I have not allowed anyone in to be my champion and it’s been making me feel incredibly sad.

It’s funny because my current bout of intense loneliness is less about being alone and wanting someone to love me, than it is wanting to love someone who also loves me.  I don’t think it’s a change.  I think it’s more of a realization.  I believe that I really do have a lot to offer at least emotionally.  I have a massive well of desire to be there for someone all of the time.  I’m tired of trying to support those friends that I love dearly from afar.  I’m very happy for them.  Most of them are well-adjusted enough that they have significant others in their lives and do not need me to care for them when they are ailing or struggling.  They don’t need me to hold them when they need to be held.  They don’t need me to be a confidante about their deepest insecurities and fears.  I am, at best, option two.  It’s the other side of the same coin.  Yes, I greatly desire to have someone close in my life who is here with me through all of my medical battles and deficiencies no matter what, but I very much want to be there for that mythical person.  I very much want to uplift and be strong for someone other than myself, because you know what?  I am over myself.  My tired story only plays out negatively, and I don’t have any more energy for it.

Of course, a big issue, aside from intense self-loathing, is that I only have eyes for an occasional particular woman.  It’s been this way since I was a kid.  I find myself drawn in by one individual, and in my mind, there is no compromise.  I only desire that person’s companionship.  Life circumstances either end it as I inevitably fail to try to win them over by actually professing my adoration, they (or I) move away, my health declines and I have to manage another personal crisis, or I do actually ‘make the move,’ and they are not interested.  So, I’ve drifted along.  I’ve dated a little, but have never felt that intense desire.  I have tried to make it work, but I cannot fake it, or allowed it to happen.  I’ve had a few chances over the years, but could never make it work.  This is where I wonder.  I wonder if I’ve cheated myself in a way that has left me now alone and inconsolable at this late stage in life.  Why can I not accept anything less than these few attractions?  Why can’t I let a relationship begin and simmer into something that can be pretty damn good?  Why do I need these ‘dream girls’ that I become so obsessed with?  Most of the time and most of my life, I’m okay being alone, and sometimes I’ve been thankful.  When I do find myself lonely though, the emptiness and depression that set in are completely overwhelming.  I cannot feel good or even just okay.  I am in constant misery and I do not know if I can recover.  It does not help my already low self-esteem either.  The fact that I am never interesting to those whom I find so damn alluring is a very detrimental blow.  In a lifetime full of also-rans and being forgotten and misjudged, or coded incorrectly like in those after visit summaries, I find myself believing that perhaps I really am worth nothing - that my life's story can fit onto a one page list of medical problems.

My emotions are raw these days because my health is once again uncertain and declining, my insurance uncertainties have put not only my already flimsy financial stability in serious doubt, as much as the quality of my healthcare, and I am facing it all feeling extremely lonely.  The past few weekends have been endless nightmares as I dwell on these things and find no positives to grab onto as a lifeline.  This weekend I’ve been wearing a heart monitor, and have been having trouble keeping the bib that holds the monitor in place tied.  My ataxic left hand makes it difficult to tie even the simplest of knots.  I can’t help but think that if I had a significant other, this would not be a problem.  How would this all be added to an After Visit Summary: “Pt. REFUSED treatment?”

Turned to Stone

The Blue Herons

“Turned to Stone”

(self-released)

Every so often songs come into our lives that stand out from the rest.  There are many reasons for this: like it has to withstand repeated listens and be catchy, and/or it has to speak to us as individuals in a way that begs for those repeated listens.  For me, right now, that song is “Turned to Stone” by the bi-continental duo The Blue Herons.  At 2024 years’ end, I sang their praises via a breakdown of their singles compilation Go On (see review here).  And here they are picking up with a recent single that is as good as they’ve ever done, which is an incredibly high bar.

Andy Jossi’s music never ceases to astound!  He is a master of layering immaculately performed instrumentation together both in dreamy, languid, and broad paint strokes, and effervescent detailed touches that nearly always climax in satisfying dramatic crescendos.  “Turned to Stone” is the latter here and it absolutely impeccably sets an emotional foundation for Gretchen DeVault’s yearning vocals.  They’ve both so captured such a tight bond in this song, it’s difficult to believe that this was put together remotely. 

On the surface this song can be taken quite literally.  A heavy hearted plea for the seasons to change and hoping for the darkness of winter to transition to the longer, warmer, and sunnier days of Spring and Summer.  Personally DeVault’s words have hit me hard.  I am currently in a period of an intense health struggle, where I’ve been taking a chemo drug to prevent tumor growth, and the side effects of that drug are preventing me from being able to live a purposeful and enjoyable existence.  The chorus goes:

“Long days are gone

From the horizon now

The winds grow so strong

They could blow it all away” 

First of all, when hearing this song, I dare you not to get this refrain stuck in your head in the best possible way.  DeVault’s voice soars and arrests hearts with her brilliant performance.  For me, these words present the dilemma I’ve been wrestling with.  The long days could be gone if I give them up in order to feel stronger, while those strong winds could blow away the three years of hard work I’ve put in on the drug, which has indeed stopped the rampant tumor growth that was occurring in my head.  This song has helped me address this quandary and face the hard reality of my situation.  Wow!  I get chills every time I hear it, which is as often as possible!

On a macro scale, I also feel like this song is a perfect distillation of our times now in a post-Covid (or post-fll in the blank here) world.  We are all a few years out of the intense lockdown, but I’m not sure that many of us have really recovered.  It seems like there are many scars left that have not yet healed, even if unacknowledged or recognized.  Perhaps I’m paranoid, but it feels like there’s a lot more mistrust in our society that is not only between individuals and institutions (government, corporations, media, etc.), and more troubling between us as individuals (neighbors, friends, family).  These are things that have always existed, yet it seems now like they are conflicts that our unplanned isolation has driven an insurmountable wedge into our lives.  Our “heavy hearts have turned to stone.”  I believe that this song is a plea as well as a wish or an instruction for us to get over all of this shit and let optimism and cooperation back into our lives.

If only this song could be heard by a lot more people. However one interprets it for themselves, it is an incredible four-plus minute song worth more than notice and acclaim.  This is a truly affecting piece of art that I feel privileged to listen to.  I hope to see you all waiting “for the sun to rise again.”

(https://theblueherons1.bandcamp.com/track/turned-to-stone)

 

 

the blue herons "turned to stone"

 

 

Candidate

 

During my last extended hospital stay for brain surgery, I experienced a lot of disturbing hallucinations.  I think I was mostly unconscious during these times, in my mind, I was convinced that I was being held captive by alternately two separate underground terrorist groups who for various reasons wanted me to pay for my alleged betrayal to their respective causes.  Despite not being able to walk, I managed to avoid capture for long periods of time by riding the rails all over the U.S.  Despite these situations all being imaginary, I found solace in forgoing my fight and flight instincts and giving up.  I allowed the hospital worker terrorist group to capture me for their surgical experiments and the military terrorist group to capture and imprison me for my beliefs.

It was all incredibly scary and I have had a difficult time putting these imaginary battles behind me.  However, the idea of giving up has continued to feel like a great decision – one that gains more and more appeal as time progresses.  In one of those hallucinations, I was trapped, so I simply laid down and tried to sleep.  I was done trying to find ways to allude my potential captors.  In reality, I am also finished with trying to find ways to continue to survive.  My long time fight against VHL (Von Hippel Lindau) has found me at a stalemate, yet it is a very precarious position.  I have lasted longer than I ever thought, and I am tired.

I am fully aware that millions, if not billions of people have much more difficult struggles which they handle with strength and grace.  In addition, I am fully aware that there are some people close to me who are in crisis.  I understand crisis and am absolutely out of energy to deal with it.  This is about me losing the desire to fight anymore.  VHL is a relentless and endless genetic syndrome and I am done with trying to navigate the unforgiving bureaucracy of health coverage in its many forms.  It is not enough that my health continues to decline, but that I constantly have to prove to faceless entities that I am broken.  There is a lot of paperwork necessary to prove that I am "sick," and most of it is insanely repetitive and incredibly inadequate.  I find it all discouraging and exhausting, which is why I am too tired to fight anymore.  I have fought very hard for a long time to live as normally as possible and not allow my medical asides to be anything more than an occasional distraction, which is why trying to convince others that I'm unwell is so awful..  I want to rest.  I want to crumple up all of the forms, pile it up, and climb atop and rest.

 

Scars Still LInger

 

Memories are strange things.  Each of us observes and perceives things differently, so shared memories can vary wildly.  Plus those occurrences have differing importance for each of us, so what might become a vivid memory for one observant, will become a forgotten memory for another.  It’s incomprehensible to me how memory works, or in many cases, doesn’t work.  Why do I remember very specific information about one hit wonder Canadian band, Glass Tiger, who I regard as one of the worst bands to ever have been professionally recorded, but can’t remember if I took my daily medications this morning.  I’m sure this is likely a worrisome sign of my on-setting dementia.  Why do some memories come flooding in with amazing detail at random times, while others languish in obscurity just out of reach? 

 

Glass Tiger "Don't Forget Me When I'm Gone"

I’ve heard that most women who have given birth, cannot recall exactly how painful the experience was.  That would explain people who give birth more than once, but something tells me that this is fiction created by some male, to feel better about himself.  During my multiple hospital stays over the past 40 years or so, I have experienced some pretty intense pain, and I can recall the experiences very clearly, if I choose to.  I generally do not choose to.  If I ever find myself in similar situations my fight and then flight mechanisms activate quickly.  I’ve had some embarrassing scenes in recent years because of my fear of re-experiencing medical pains from the past.

 

The numbing of past pain for me has generally occurred from emotional pain – not so much physical pain, although I do not deny that they can be deeply intertwined.  However, like so many of us, I get those random late night memories thinking about a past relationship that had run afoul years ago.  Sometimes those memories are positive ones, and those good memories can be tricky.  For example, this happened to me recently.  I was looking back at a past relationship fondly, and believe it or not, could not for the life of me, remember why the relationship ended.  In this case, the very next day, I pulled some random papers from a file that had bits of past writing inside, and there it was: evidence of why that particular relationship failed.  It astounded me that it all so easily slipped my mind.  There was plenty of solid proof as to why that shit needed to end for both parties involved.  I feel like an idiot typing this!  I know, I know, but it’s these lapses in memory that can get us into trouble. 

Aren’t we supposed to learn from our experiences?  Like the old example of a child burning their fingers on a hot stove.  Next time they’ll know better.  That gets socked away into the memory banks, and for most of us, stays there forever.  I wonder why our brains selectively choose what memories to lock away for future reference, and what to discard.  Obviously, some of us are better at learning lessons from past mistakes, or remembering how to avoid pain.   

I guess I’m a little stunned at reading about a past failed relationship from the perspective of when it had still been fresh, and discovering that I had pushed those negative feelings so far aside that I wasn’t really certain of the validity of what I was reading. I immediately began to make excuses.  I allowed the obvious: the failure part of the relationship was at least mine as much as it was hers. I could only remember those good times – the comforting times.  I envisioned how we have both changed over the past several years.  Forgiveness is one thing, but foolishness is another.  Light up that stove top!  Maybe I can stick my face on there. 

 

David & David "Welcome to the Boomtown"

I find memories, whether accurate or not, incredibly important and endlessly intriguing.  Memories are made up of all of our individual experiences.  I am fascinated by people’s stories, or their collection of memories – scars and all.  To me, these are what make us all unique and interesting.  Why does the memory of first hearing David & David’s “Welcome to the Boomtown” stick with me?  Why do I remember that more so than my high school graduation?  Maybe one day that specific memory will serve me.  Maybe not, but it does tell a small story about who I am and what I’m made of.  It’s these things that I want to know about others.  It concerns me that I know fictional characters from novels, television shows, or movies better than some people I’ve known for thirty years.  Why do so many of us keep our experiences so close to the vest?  I suppose that most of us simply don’t trust each other with this personal information or we don’t care.  Perhaps, if we were more willing to share our memories with each other, we might collectively learn more life lessons.  Or perhaps not.

Keep on Working

 

Every September for the past several years, I have posted hyper-enthusiastic posts regarding my annual vacation time spent attending the annual visit to Portland by the LPGA (Ladies Professional Golf Association).  Except for last year.  Last year, I was hobbled too much by my medical condition, the tournament was moved to a terrible location and it was mostly rained out.  I did try to attend one day, but the course was simply too hilly.  It was upsetting, but I kept telling myself: next year.

Everything started falling in to place.  The tournament is set to return to its usual location at Columbia Edgewater CC and return period.  A new sponsor has signed on (AmazingCre – whatever that is), and the field looks to be loaded with stars.  However, I am not ready.  Generally, I get involved for the entire week.  I have volunteered to caddie for the two Pro-Ams and attend from dawn until near dusk all four rounds of the tournament.  I genuinely love it.  Perhaps too much!  Every year, I realize that I feel truly at home out there and feel great!  It makes me giddy!  I have always been able to overcome my physical limitations and push through and walk those hills repeatedly in the sunshine.  I had considered buying what they call Champion’s Club tickets (which are like luxury box seats in an arena (food and beverages are provided), but these seats overlooking the final hole are now too expensive for me to consider, even though I have bought them in the past.  I most enjoy following and rooting on my favorite players as they make their way around the course, but had considered the Champion’s Club seats as an alternative due to my current disabled state.  Unfortunately, they priced this particular riff raff out of the market, and the realization that the walk from the adjacent field parking lot to the golf course would likely be too difficult.

Now, on the eve of the tournament, I find myself truly lost.  I don’t carry cable TV anymore, so I will miss the TV coverage and I won’t get to see the golf and the trials and triumphs that take place everywhere on the course.  It is depressing.  To most, it likely sounds silly.  Yet to me, it’s emblematic of where I am now.  So much of who I am and what I do, or have always done, is gone.  Live music?  Gone.  I know there are ways to make some of these things happen, but it is all just too much for me to handle at this point.  I’m in mourning for what I used to be able to do and have not yet figured out what’s next.  I find myself sinking deeper and deeper into depression and this event that I always find so important and so rejuvenating has slipped through my hands for a second year in a row.

Next Year.  There’s always next year.  Gotta keep on working.

Overkill

 

Apparently, I’m a very nostalgic person.  I was thinking about how during the fall of 1988, my senior year of high school, I made a melancholy mix tape made up of songs from my earliest purchased records, so we’re talking stuff from like 81-83.  I remember being a huge Men at Work fan in 5^th & 6^th grade and digging their goofy schtick.  By 1988, I was fully immersed in the darkness of a lot of postpunk, gothic rock and industrial, so I was pleased to choose songs like the hyper reflective and nostalgic “I Can See it Your Eyes” and the underrated “Overkill” as choices for my mix.  It was fun rediscovering these things from my then distant past.  It seems silly now, because that was only five or so years prior, but it was almost a third of my life at the time.  Now that I am officially old, five years is a blink of an eye in an ever-unchanging lifestyle.

 

Men At Work "I Can See it in Your Eyes"

I realize that it is quite meta to be reminiscing about a time that I was reminiscing about songs about reminiscing, but that’s how I seem to be built.  Besides, if one listens to these two songs closely, they will tell my story here much better and more eloquently than I can.

 

Men At Work "Overkill"

As summer turned into fall in 2004, I was sick.  I was really sick.  I’ve written about it before, so I won’t dive too far into it here, but I had been on kidney dialysis for almost three years, I was going through treatments to kill my immune system, and my skeleton was withering away.  I was dying.  I hadn’t given up, but unconsciously, I think I knew my time was coming.  I had stopped sleeping, so every night I would weed through all of my stuff and box most of it up to get rid of.  I began perusing through old stuff like all of my comic books from the early 80s and all of those old mixtapes I used to make for car rides.  Before getting rid of these things, I read the comic books and listened to the tapes.  Both would transport me not only into the world’s within, but to the times that I originally encountered them.  It was pretty powerful.  It was a slow-cooked version of having much of my isolated life pass before my eyes.  There was a particular mix tape from 1987 that blossomed a very powerful flashback to a very particular day.  It included the song by the Cure, “Why Can’t I Be You?”  I think the fact that the tape had been put together when that song was brand new, took me back to that time.  When I say “took me back,” the memory became so vivid and real that it became a powerful beacon that I began to strive for. 

 

The Cure "Why Can't I Be You?"

The flashback was from a day in 1987, likely June, just after school had ended (sophomore year).  It was a rare bright sunny and warm Saturday on the Oregon coast and I was blasting music in my bedroom, and I remember feeling antsy and likely bored.  My dad told me he was driving to Salem to drop off some commercial art he had done for a client.  I asked him if I could ride along as long as he dropped me off at a record store.  He did and I purchased the Cure’s wild new double album Kiss Me Kiss Me Kiss Me and Concrete Blonde’s debut.  When we got home, I put on the Cure’s new album, and my headphones and was completely drawn in.  The album was epic and more than I could’ve ever hoped for.  It was everything!  Not long afterwards, I got a ride to the south end of town for a dance at our city’s Masonic Temple.  It was there that I hit the dance floor for the first time in my life (to “Why Can’t I Be You?” and Depeche Mode’s “Strangelove”) and later sort of tried my first clove cigarette (so 80s).  It was a good day!   As a memory, in 2004, it was so real – so tangible, I began to feel like I was living that day again.  I’m not sure of the significance of that day, but I wanted those feelings again.  I loved that Kiss Me Kiss Me Kiss Me felt like it was brand new again, that I had not yet heard “Just Like Heaven” 40,000 times and had developed a dislike of the final LP single “Hot Hot Hot!!!”  Not long after this recurring flashback began to dominate all of my thoughts, I got a call for my life saving kidney transplant. 

Like a lot of people, my memories are generally tied to the music I remember from those times.  It’s an old cliché, but it is truly a soundtrack to our life stories.  Personally, I am fascinated by stories.  A lot of the old stories I’ve shared on this page, are moments in time with some deep significance for the narrator/character.  This is why I’ve been so thankful and excited about the handful of Song Stories people have sent in.  It’s these personal attachments to important songs that can sadly get lost when we go. 

A couple of weeks ago, I was listening to some Northern Picture Library and Field Mice songs in my car, as I was stuck in traffic.  I became overwhelmed by the emotion behind some of those songs.  Old wounds from heartbreak bubbled up to the surface, as did an intense longing.  I began to think about how important, not only those songs are to me, but those feelings that they still bring to the surface, which are tied to moments from my life that are only meaningful to me, and hopefully to the other players from those moments.  Then I began to think about how fleeting those moments are and how easily they disappear.  When I finally do pass, all those important moments that make up what and who I am will be gone. 

It brings up all of those old questions everyone asks themselves: “what is all of this for?”  Believe me, I’m not just now asking these things, but for some reason, it has been on my mind a lot lately.  Perhaps it’s because I’m older, wildly unhealthy, and feeling a lot lost.  There is a strong sense of purposelessness happening in my life right now.  I do not feel like I’m contributing, but instead just taking up room and valuable resources.  Perhaps it’s because I don’t feel like I used to.  I’ve reached a point in my life where I am too numb – too calloused from past physical and emotional distress.  Most news is bad news, so when I get positive news, I don’t trust it!  That life soundtrack is getting old and outdated.  New memories are rare and rarely as affecting as they used to be.  I kind of miss feeling dramatic and alive!  Am I alone on this? 

This is a long-winded call for more Song Stories!  Please share them here (tangledrec@hotmail.com).  Every story is important and I’m personally interested in why it’s important.  It can be any song and it can be anonymous.  Let’s explore these hidden moments together.

Thank you Alexandra Smith for sending me the "Overkill" video.

Vanishing Point

 

This past Spring, my niece Ashley caught a really nice day and she treated me to a wine tasting.  We were just north of Yamhill and she decided to drive, which was a good idea, because I was a bit tipsy.  As we turned onto highway 47 to head back toward town, I noticed a small sign that was knocked over and barely visible amongst the roadside weeds.  I only caught it out of the corner of my eye and read it as “Chris Man Can.”  I thought it was strange, and it gave me the same kind of strange chill I got when I passed the “Don’t Give Up” motivational sign in Yamhill County a couple of years earlier (read about it here), when I was driving back country roads and falling apart at the seams. 

This stuck with me.  Unlike the “Don’t Give Up” sign, this one was oddly specific.  I later went back to that stretch of road and it turns out that the sign really read: “Chris Mann Can” and had been replaced by a new sign saying the same words, but also included a picture of this Chris Mann and wanting us to vote him in for Congress.  Cue the Replacements fantastic song “Valentine:” “well you wish upon a star / that turns into a plane.”  In other words, it was a disappointment.  I was planning on taking a picture, before realizing that it was not some sort of message to me and all the other Chris Men, but a Republican campaign sign. 

 

The Replacements "Valentine"

I’m not sure how I would’ve processed the message that I originally thought the sign was giving, other than bewilderment.  What I do know is that this Chris Man Can’t.

Recently, I visited the Oregon coast.  While I grew up there, there were two FM stations nearby and they both played a strange combination of adult contemporary and classic rock.  There are several stations now.  This trip, I chose to listen to 100.7 The Otter.  It was basically the same format as the others.  Heavy rotation was Ready for the World’s “Oh Sheila” and Bad Company’s “Feel like Making Love.”  I don’t think I had heard “Oh Sheila” since the 80s, but had heard it twice within the first hour of my visit.  Sadly, I hear “Feel Like Making Love” far too often.  For some reason, as I drove along the ocean highway, I tried to figure out the meaning of these things.  What brought about this combination?  Sheer evil genius.  Clearly, I am not ready for the world.  This Chris Man Can’t. 

Ready for the World "Oh Sheila"

This trip was a bold move for me.  Ever since I started the anti-tumor medication Belzutifan early this year, I have somehow experienced every side effect listed on the paperwork.  I hit the jackpot!  It has been a struggle – one I didn’t expect.  During my life, for the most part, I have handled medication, drugs, alcohol, etc. pretty well.  I think it’s because I am a big guy with a massive need for control.  However, in this case, I have been devastated.  My hemoglobin drops really low, so I have no energy, I lose my breath with almost any movement, and my heart races and hurts if I am not laying down.  So, I have no life, aside from rerun broadcast TV stations like MeTV, and my music collection (I try to read, but my eyes haven’t been right since my last surgery).  The trip was made to avoid the heat and to try to cure serious cabin fever.  I’ve been told by a few neurosurgeons that they will not perform another brain surgery on me, because it would be too dangerous – too high of a chance for serious hemorrhage.  I currently have five small brain tumors.  The nature of these is that they continue to grow until they cut off parts of the brain around them.  The medication has slightly shrunk these tumors over the past seven months.  However, my quality of life is not quality.  Am I making the right decision continuing the medication?  What would you do?  I’m already seriously limited physically from past surgeries and strokes.  This Chris Man Can’t figure out what’s best.

Honestly, I could go on and on about what I can’t do or take.  Ever since the pandemic hit, it seems like everyone is on edge, and I am no different.  I’ve been struggling with evolving friendships as my health and mobility has declined.  I struggle with the divisive politics and how anything and everything is now political.  I’m not sure there ever was any, but I would love to see and hear nuanced and reasoned debate when disagreement arises.  It feels like we’ve all become too isolated, where anything that interrupts our flow in any manner becomes our enemy.  I can see it in myself.  About a year ago, I went to the grocery store to buy a few things.  As usual, I chose the check out lane with the shortest line, but still had to wait forever.  For some reason, the checker liked to touch and examine everyone’s items.  He did the same with my items.  I handed over a .30 cent coupon for something and it didn’t work.  I think I had chosen a different sized package for a product than the coupon required.  Instead of just saying so, he began digging through my bags.  I lost it.  I suddenly started cussing him out before storming out.  It was not my finest moment and I felt terrible.  It was so unlike me.

I write these types of things to help organize my thoughts and to help ease my stress.  I post them in a vain effort to connect with others.  I hope that someone out there might relate and that it might somehow help in some small way.  Somehow though, Chris Man Can’t anymore.  None of this is enough.   

 

Something Must Break

Wow.  It has come and gone again: my annual journey into the world of the LPGA and the long running Portland Classic out at the stunning Columbia Edgewater Golf Club.  Increasingly, it has become not only the highlight of my year, but in many ways the only thing that keeps me trudging through each chaotic and crises filled day.  This year proves, once again, that the thrill remains.  I simply cannot get enough of this event.  It’s overwhelming, like a huge music festival where all of my favorite bands are playing at the same time!

The tournament itself was anticlimactic this year, as the impressive young Canadian phenom, Brooke Henderson dominated over the weekend and went on to win by eight strokes, while setting a tournament scoring record, but it’s the details and moments of triumph and dismay that make the multiple trips around those 18 holes so memorable and intriguing.  Once again, I volunteered to caddy for the money guys in two of the Pro-Ams.  On Monday, I unknowingly caddied for the mayor of Hillsboro (one of the other caddies looked him up on her phone, so I found out after the round), who was a pretty fun guy that looked a lot like the zany David Feherity.  Our pro was the vivacious and pretty Jenny Suh, who continued to prove that these ladies are not just great at golf, but the best ambassadors for the sport period.  She was personable, funny, patient, and helpful to the amateurs.  She coached local sports radio talk show host Isaac Ropp from wildly erratic play early in the round to a series of great shots by the end.  This has been true of all of the other players I’ve encountered so far in this environment.  For the Wednesday Pro-Am, I was able to recruit an old friend, Jon, out to join me.  He is not a golfer, nor does he know much about the game, so he was nervous and worried about taking part.  However, aside from the waiting around part before getting assigned to a group, he did fine and had a great time.  Our pro was Lizette Salas, whose heartwarming story of getting to the LPGA is one made for TV (see here), as she came from rags to riches through the hard work and support of her family and her own perseverance.  She was quiet, but she began to be more open and funny as the round progressed.  

The caddy gig is always a must, especially because of the up close view of these professionals and the chance to see the golf course from the fairways, but the tournament itself is what really gets my adrenaline pumping.  As always, I try to follow groups through entire rounds and preferably two full rounds each day.  Making the decision of who to follow is getting more and more difficult each year, as I am collecting more and more favorite golfers, plus I am devoted to supporting Jee Young Lee, the pro from my first caddy experience in 2012.  I decided to cheer on Jenny Suh from the Monday Pro-Am for the Thursday morning wave and Jee Young Lee for the afternoon. Both players shot rollercoaster rounds of two under par and one under respectively.  Jenny Suh started off slowly before a couple of bogeys had her already eight shots off the early lead.  Luckily, she rebounded with a stellar second nine holes, which included four birdies.  

When Jenny finished I raced over to the first tee to catch Jee Young Lee tee off with her group.  There is a lot of exercise and no rest out on the course for rabid golf spectators like me.  Like Jenny, J.Y. Lee had a crazy round.  She opened with an effortless birdie on the first hole and worked her way to three under par through the first eight holes.  But then, suddenly all went awry.  She bogeyed the 9^th hole, and then hit a drive that bounced over my head and into the trees on the 10^th hole, which led to a shot into the water hazard and a double bogey – erasing her progress and putting her back to level.  This is one of three shots Jee Young hit directly at me, making me wonder if she was trying to get rid of me.  The round continued along a similar erratic pattern, but she managed to scratch out a hard fought one under round.

Friday was the reverse: JYL in the early AM and Jenny in the afternoon, with even less time to connect from round to round.  However, it was two of their playing partners who stole the show this day.  Caroline Masson, from Germany, continued to hit solid shot after solid shot and then got hot with her putting, leading her to a best of the week eight under par 64 for the day.  Jee Young Lee also played well.  Early on, her iron play was a bit wobbly, but she kept scratching out fantastic and nerve wracking par saving putts, which twisted my guts into knots each time.  Luckily, she started hitting the ball more consistently, and then finished with two nice birdies on her final two holes (8 and 9), including about a 30 foot bomb on the ninth hole. During the round, her caddy introduced himself, perhaps noticing that I was one of two people who followed the group every single hole and after the round he and Jee Young came up behind me as I was studying the pairings guide (tee time schedule).  We were all giddy from the finish.  We chatted for a few minutes and I was so excited I completely forgot my main goal for the week, which was to leave the tournament capturing a picture of her and I together.  I’ve said this every year since 2012, but it has yet to happen.  My mind turns to jelly when she is in front of me and I guess I swoon like a teenage girl at a Beatles gig.  No picture taken, but a thrill to meet her again, especially under happy circumstances.

Quickly and filled with a buzz, I scooted over to the first tee to see the Jenny Suh group.  Again, it was her playing partner, Candie Kung, who shot a flawless round of golf.  She wound up shooting a six under par 66 for the day, but it could’ve been so much better – like record breaking better.  She missed at least five very makeable short range putts for birdies.  She kept placing the ball close to the pin after hitting every approach shot from the center of the fairway.  Candie’s caddy was oddly captivating too.  He looked like one of those old large size G.I. Joe dolls with the felt hair and beards and would read the greens for Candie with extreme exuberance.  He seemed to use his whole body, flopping around, crouching, lying down and circling the hole repeatedly.  It was all very strange.  Meanwhile, Jenny struggled and was clearly frustrated.  She simply could not get anything going.  She managed to steal a couple of birdies along the way, but finished poorly and wound up with a one under round.  Good news is that both made the cut, so the drama of seeing J.Y. Lee barely miss and barely make the cut the prior two years was avoided.

The weekend began with disappointment.  Because the PGA Championship was also this last weekend (congratulations to Jason Day for the big win!  Well deserved.), Golf Channel scheduled their television coverage of the Portland Classic during the time the live coverage of the men’s tournament was airing on CBS, so they could free up air time for their repetitive and endless post game breakdown.  The result being the players played in threesomes and teed off both the 1^st and 10^th tees to condense the field.  This is something normally employed for weather delayed tournaments to try to squeeze play into the scheduled days.  It was frustrating because it left me with only one chance to go around the course with a player.  As a result, Saturday was pretty non-descript overall, as Jee Young Lee really struggled with her iron play and only managed an even par round, which was a bit of a miracle considering the trouble she kept getting into.  Her round included a lipped out putt on the 7^th green that went on to slowly trickle down the slope about 30 feet away – apparently the hour or so of rain (finally!!) the previous day had not taken the fire out of these lightning fast greens.  This was also when Brooke Henderson grabbed complete control of the tournament – eliminating any final round drama.  The bright side is that my friend, Christine, joined me out there, driving in from Moscow, Idaho to see the final round and a half.  

Sunday was different.  We arrived comfortably in time to see Jee Young Lee’s group tee off.  She hit three fantastic shots into the par 5 tenth hole, and as I stood next to the 10^th green, Lee looked over at me, smiled, and mouthed “hi.”  I immediately melted.  All of these years, I was never sure if she even remembered who I was, as she has always held a pretty strong game face intensity during each round, and our language barrier has kept our post round interactions pretty limited.  She then stepped up and rolled in a birdie.  What a perfect start to the day!  I could not have been more excited.  It’s a good thing Christine and Jon were both there with me, otherwise, I may have floated off into the atmosphere.  The entire round was like this.  Jee Young Lee was smiley and chatty with her playing competitor, Ryan O’Toole, and her caddy Steve.  She had such a relaxed demeanor.  It was surprising and fun to see.  She played pretty well and finished the tournament at six under par overall, but this is when a creeping panic started to settle into my chest.  The tournament, the thing that keeps me going, one of the only things that inspires and energizes me anymore, was coming to an end.

Thankfully, my friends were with me, when Jee Young Lee and her caddy emerged from the scoring tent after her round.  Steve handed me Jee Young’s game ball, signed, and told us that she is retiring from golf.  She is going to move back home to South Korea, marry her fiancé, and start a family.  Christine was sure to snap a picture of JYL and me together – not allowing me to lose my head and forget, as usual, especially with this sudden news leaving me dazed.  Jee young Lee was kind enough to spend those few moments and say goodbye.  I am thankful for all of the great memories and thrilling moments and highs and lows she and her golf have provided over the last few years, but I will miss her.  I will miss following her progress on the LPGA.com leader board throughout the year from faraway tournaments.  

Looking at this picture now, I see her as a person relaxed and happy with her decision to move on.  Meanwhile I look terrible.  I look sick.  I look like someone in pain - physical pain from the cyst slowly growing in the base of my brain, which feels like someone has jammed a walnut through my skull, and the emotional pain of someone who does not know what to do to find contentment or happiness anymore, except out on the golf course watching a player who I will never see again.

Two years ago, after this tournament, I made a decision.  I realized then that the excitement and life-affirming joy that I always feel while climbing the hills following these wonderful women around a golf course was a feeling that was completely lacking in my personal and professional life.  I envy all of the people out there, from the players to the caddies, to the coaches and the LPGA events staff, for having a dream and going out and finding a way to live that dream each day.  Don’t get me wrong, I know that everyone involved has their issues, gripes, hassles, downfalls and nightmares – we all do.  This was when I decided that instead of complaining about my job day after day, I’d do my best to make my job better.  

I began the long process of studying potential software systems that could really enhance and streamline the processes of the non profit organization I work for.  I’ve struggled through bureaucracy, gotten involved with RFI’s and  RFP’s, contract negotiations, and stuff way above and beyond my pay grade all in order to essentially change my job into something that moves beyond the day to day putting out of fires, all of which could be easily prevented with decent planning and consistency in place.  During this time, there have been massive delays and road blocks and what feels like either devolving management, or my own diminishing ability to deal with the constant unnecessary chaos, or both. Somehow I have continued to push forward with this project, but the fulfillment has not yet been forthcoming.  Instead it has been a battle that I have a lot of wounds from.  I am losing the ability to believe that any kind of system can ever be implemented with any success, because the entropy of my work place seems to always lead to a confusing mass of disorganization and nauseating stress.

As I have mentioned in previous examinations of these annual LPGA events (New Life, Sparkle in the Rain, and Numb), I am increasingly discouraged with the direction of my life and am not sure where to turn.  As I return to work after my week long LPGA adventure, I return to piles of work that has been left undone during my absence, and to tons of needed preparations and information gathering for this big project as the implementation finally begins to come to fruition.  But there will be no available time to work on any of it due to the mess.  Part of me is tempted to walk away, though I have no plan for how to make a living as a back up.  Part of me wants to grind this out and see this damn project through, but I’m realizing more and more that even if I manage to get this thing to work and work well, it’s not a dream or something I am genuinely passionate about.  Will the effort be worth it?