Bringin' on the Heartbreak

 

There’s a scene near the end of Wes Anderson’s 2001 movie The Royal Tenenbaums where Ben Stiller’s character, Chas Tenenbaum, emotionally breaks and says “I’ve had a rough year, dad.”  It’s almost too much for me to watch, and one of several moments during this quirky movie that never fail to get me emotional.  It has always resonated with me in a way that I haven’t fully understood.

 

This past summer, I had two medical procedures to insert five stents in around my heart to clear some blockages.  After awakening in the post op recovery room after the first procedure, my senses were flooded with a surprisingly loud presence of the Def Leppard song “Bringin’ on the Heartbreak.”  In that moment, I could not remember the band's name, so like the nerd I am, I began calling out to the entire Recovery unit - anyone.  I’m certain everyone there was born long after the song’s release, so they weren’t privy to its ubiquitous radio presence during the early 80s. They may not have been old enough to be privy to the idea of radio ubiquity.  My guess is that they were playing some kind of streaming service’s “Heart” playlist algorithm – you know, for fun.

As I stirred back to consciousness from the procedure, my squirming brought a nurse over to tell me not to move my legs, because of the incision in my right inner thigh.  She tied some bedding around my leg as a reminder to keep them still.  She moved to the left bedside and introduced herself as Nicole.  I asked her again, if she knew who did the song that was playing, just as Whitesnake’s “Here I Go Again” came on.  There goes my “Heart” songs theory.    I guess someone in the room was feeling their 80s hair rock.  Like a drifter they were born to wear cologne.  I chuckled and Nicole asked me what was so funny.  I thought to myself, that it would be fitting that the final flashes of my life would be the music that I couldn’t stop mocking as a teenager.  I twitched my leg and Nicole asked me to relax.  Then she put my left hand into a tight clasp between both her hands.  I could barely make out her smiling eyes floating above a surgical mask. At that point, I knew I was okay and drifted back to sleep.

During my life, I have tried to not be noticed.  I think I’m pretty good at it (see Nowhere Man).  I rarely offer up participation in groups, but if I do, I often try to be first in order to lessen the pressure and be the first to be forgotten.  I try to be as small as I can be despite my size, and I always try to leave space between me and the general public.  I try to blend in as much as possible.  I used to wear concert tees all the time, which would occasionally elicit notice out in public, so I stopped that.  It's not difficult to be forgettable.  I’ve always been generic, because I am.  History and the size of the population tells me so.  There are billions of souls with hopes, ideas, fears, problems, tastes, skills, etc. – all more profound than what I can muster.  It’s an overwhelming realization.  Who am I to believe that anything about me is worthy of notice? 

I get that I have posted these occasional poor health missives for potential public consumption over several years, which is antithetical to my stated efforts to not call attention to myself.  I do not do it for notice, or for sympathy.  I do it to sort out my own feelings.  I write these things to settle my thoughts.  The act of writing helps to calm my anxieties.  Plus, I feel safe in my little anonymous corner of the internet and the mostly abandoned realm of blogs.  If there is a public side, I’d hope to maybe spark conversation about health experiences and health care and just life in general. 

 

Because of the stents being placed near my heart, I was prescribed 36 sessions of Cardiac Rehab, which is comprised of two hour long sessions a week at a gym within a hospital that is supervised by several on staff exercise physiologists.  They keep an eye on us via heart monitors, routine blood pressure checks, and observation.  I love it.  It makes me feel like I’m taking an active role in improving my health and life, which, like the writing helps give me purpose.  I enjoy casually learning about my fellow patients and learning about their health experiences and how they wound up at Cardiac Rehab, and I enjoy the check-ins by the staff who are all very kind and motivating. 

Recently, I was scheduled for an Endoscopic Ultrasound to get a closer look via biopsy at some “concerning” cyst growth in my pancreas.  The procedure is pretty simple, and I’ve been through it before (see Here’s Where theStory Ends).  I know that VHL cysts in the pancreas are benign, but I’m okay with them looking closer to be safe.  A few days before the procedure, while at Cardiac Rehab, Hannah, the best of the exercise physiologists approached me while I was flailing around on a recumbent bike.  She was there to ask me about my daily exercise routine, to take my BP, and to answer any questions I might have.  I reported to her that I was about to go in for this minor procedure, because I had previously been informed that I should alert the staff of any new medical news.  Hannah asked me how I was doing, and how I felt about it.  I think I grumbled something about “futility” and “being tired,” and Hannah retorted with encouraging specific evidence about my progress since beginning the classes, and dammit, I broke!  An instant flood of emotions rushed up into my nose.  It was as if she pushed a button that unlocked a lot of unresolved pain.  Sure, we both knew that this procedure was not serious, but for me, it felt like a breaking point after a lifetime of struggle.  Is this what it means when people say they “feel seen?”  Was this me allowing myself to be “seen,” or was I simply caught in a flash of light before scurrying into the shadows like a cockroach?  

Ever since that moment, I’ve been a ball of conflicting emotions with bouts of excited optimism mixed with total unflinching despair.  The optimism?  Maybe I’m beginning to realize that being seen is not so bad.  That it’s okay to ask for and accept help, and to trust, and to admit that I’ve had a rough stretch..  The despair?  I wonder if I’ve waited too long to learn this lesson.  My efforts to be alone have been pretty damn successful, so now I feel like I’m left with no shoulder to lean into and say “I’ve had a rough year.”

We Don't Need Another Hero

 

This is a post I’ve wanted to write for years, but haven’t had the courage to share, because I’m afraid it will be misconstrued.  Ever since Von Hippel Lindau (VHL) was diagnosed in my family back in 1985, people have been trying to “save” us.  By “save,” I mean that people have come out of the woodwork to heal us of a genetic disorder via various means.  I am not referring to people who offer help – like providing meals, or rides, or fundraisers, or valuable friendship and support.  We’ve had that over the years and it is a blessing.  It is difficult for me personally to accept, but it is truly amazing!  No, I’m talking about people who seem to be determined to cure us.  With my family, early on, it was often people we barely knew.  There have been Gypsies, Empaths, New Age Healers (not the band), Shamanism, Macrobiotics, as well as friends who have offered advice (never asked for) about how to beat this disorder.  My family as a group, and me personally, have always tried these things out.  We’ve drastically changed diets several times, tried acupuncture, acupressure, various therapies, lifestyles, etc.  None of these things have stopped the growth of tumors.  Most of these people have come and gone over the 35+ years it’s been going on.  Again, I’ve taken all of this very seriously and have tried different things to stop this garbage from growing in me and, on some level, appreciate the effort, though I worry that it has had a very negative effect on me over the years.

 

One consistency with these “healers” is that nearly universally, they try to get us to reject modern medicine and science – that the disorder can be controlled and dealt with the right attitude and their guidance.  I have always found this strange, because I have yet to encounter a medical doctor who has dismissed alternative treatments.  It is concerning.  The negativity comes from the constant failure of these treatments.  If the “healer” hasn’t already vanished, I am instructed that I didn’t do the treatment right, or that I didn’t commit enough.  The net result is that I feel like a failure, because this treatment worked on their second cousin’s sixth grade teacher’s Aunt, or something.  It’s confusing and discouraging.  I’ve failed at everything from full lifestyle changes to trying to wish away my tumors.  Maybe it is my lack of commitment.  I cannot write off medical science and keep from getting my annual scans to check on tumor growth. 

Don’t get me wrong, for the most part, I think these people have had the best of intentions and I truly appreciate that, which is why I have always tried.  However, I am tired of feeling like failure.  I’m tired of the lack of understanding.  I often get the feeling that these “healers” believe that I want to be riddled with tumors.  I can assure you, that’s not the case!  I have been willing to try a lot of different things over the years to try to avoid surgeries and specialists and constant various exams.  It is like having full time job, where instead of being paid periodically, you pay your boss.  

I think of that idea, where someone may complain about their problems, not to have the recipient of these complaints fix the problems, but just to listen and understand.  This is similar, except, most of the time, I do not complain about my health issues (or try not to), but I’m often getting strange solutions from people that completely ignore the fact that I have nearly forty years of experience and knowledge.  What it tells me is that the desire to help is more about them than it is me.  It is refreshing when people offer to pray for me, or to send good vibes, or try to understand my medical experiences, before jumping into shaming modern medicine and trying to convince me that I have been foolish all these years by not trying their latest favorite healing method.  Modern medicine and I have had a rocky relationship over these many years, yet it has been the only consistency in helping me deal with this shit.

Please take this into consideration, if you find someone close to you stricken with health issues.  Your love and support are much more helpful than a million self help books.  I may a selfish whiny asshole, but, as a longtime member of the chronic medical issues club, I do not think I’m alone in this.