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 care of people.  I admire everyone from the mighty brain surgeon to the cleaning staff at a hospital.  I am thankful for their hard work, 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, and 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 after visit summary explains this interaction is now 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 a 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, or musician, or whatever.  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?”

Disintegration

 

In March of 1985, I was diagnosed, along with my mother and older brother, with Von Hippel Lindau (VHL).  It’s a genetic disorder that is characterized by the development of both benign and malignant tumors in various parts of the body.  Within a week or so of this diagnosis, I had a tumor removed from my right kidney.  I was not symptomatic.  I was a couple of months shy of my 14^th birthday and in the midst of 8^th grade and basketball season.  At that time, I was obsessed with playing basketball.  I wasn’t the phenom that I had always hoped.  In fact, I had become awkward, overweight, and slow, but I still worked hard to be a good player and teammate.  I had some skills: I was a decent and willing passer, a good screener, a respectable rebounder, and I could shoot accurately.  I was middling – not the superstar I had dreamt about becoming as a young kid who got to play in the third grader game on the playground as a kindergartner.  Those were heady times!

Anyway, I am losing my focus.  The thought of having a major abdominal surgery was so foreign to me that I didn’t know how to react.  I wasn’t scared, because I didn’t fully understand what was about to happen.  I felt great, so it did not seem possible that something was wrong with me aside from my usual insecurities.  I was more worried about my brother who had already gone through a brain surgery (his symptoms of dizziness and nausea led to a CT scan that led to our family’s diagnosis) and was also set for a partial nephrectomy to remove a kidney tumor.  We would eventually be in the hospital during the same week.

That was a little over forty years ago.  Along the way, my mom passed away at the age of 46 from this genetic syndrome, my older brother has had multiple surgeries and is now completely disabled, and I have also struggled through several surgeries, treatments, radiation, three years of dialysis, and much more.  Some of these things have gone well and a few haven’t.  My last surgery in 2021 was for the removal of a few hemangioblastomas.  This was one of those few.  I was on heavy steroids for a few months and gained an astonishing amount of weight, nearly bit my tongue off during the surgery, was left immobile on my back for nearly two weeks, had limited contact with people due to the Covid lockdown, began having incredibly intense paranoid delusions, and by the time I left, I could no longer walk without assistance.  The scariest part for me were the delusions and the loss of control.  My mortality never felt stronger and the feeling that I am very unresolved.  I have always fought hard for my recovery and survival.  That last surgery made me realize that my ability and resolve to return to a fairly healthy stasis is compromised.  I’m older and my body is no longer able to bounce back so easily. 

 

Recently, I was diagnosed with three vein blockages leading in to my heart.  I was casually informed that not only do I need surgery, but I need bypass surgery, which is much more invasive.  Within a few days of this diagnosis (and Yes I was diagnosed because I’ve been struggling with fatigue and low energy and inquired repeatedly with my doctors), I met with a surgeon and he seemed skeptical of my extensive medical history.  Am I too much of a lost cause?  Would a major surgery such as this be deadly?  The surgeon ordered several tests in order to determine my viability.  Those tests are nearly complete.  I am in a limbo state at this moment.  What’s next?  No surgery has been scheduled at this moment and I am left to stew this scenario in my thoughts all the time.  This is not good.  I am getting more anxious and scared by the day – even hour to hour.  Will I be denied a potentially lifesaving surgery and left to disintegrate, or will I receive the surgery and have to endure incredible amounts of pain and be able to summon up the drive to get well, or even back to the tenuous state I’ve been living in for the past four years?  An existence of near daily medical appointments, limited ability to accomplish almost anything, non-stop paperwork to prove that I am unable to function well, and insurance denials (receive one today!!), and that ever increasing realization that I need help that I do not know how to ask for, or come to terms that there are a lot of things that I am no longer able to do.

I am fiercely independent or a control freak.  I have lived alone for twenty years, and I like being alone.  I like to take care of my business and not rely on others.  It terrifies me to lose that control.  This is not unusual.  Lots of us eventually find themselves at this stage as our bodies and minds begin to fail and we try desperately to hold on, while those who care for us try to help.  It often ends in conflict.  It’s all very uncomfortable. 

I’ve considered giving up driving over the last few years, but I am so immobile otherwise, the idea of losing that freedom scares me.  Plus I feel embarrassed if I cannot accomplish simple tasks on my own anymore, and I feel gross and weird.  None of this is good.  One would think that all of the long hospital stays I’ve had would be humbling enough, yet I try to maintain some sort of delusional sense of dignity. 

That’s just it.  Currently, I am frightened.  Something feels different.  It’s a more common surgery than what I’ve been through before, and yet it seems foreign to me.  I’ve become accustomed to kidney and brain surgeries, but the heart?  Never even considered that as a possible future diagnosis.  Plus, during the past year or two, I’ve kind of felt like I’ve reached my limit of medical issues.  I’m exhausted from not ever feeling well.  I’m tired of struggling to tie my shoes, or of feeling like my head will explode, or of whatever.  In as non-dramatic way as possible to express this, I am often so tired that dying does not seem so bad.  There are many great aspects of my life, which I am incredibly grateful for, yet the discomfort and challenge of re-learning how to do simple things over and over have gotten to me.  We all have problems and I do not share this for sympathy or attention.  I write this to help my psyche.  Writing calms my restless head, and sharing makes it all feel a little less scary.  

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.

 

Half-Life, Remembered

When I was in High School, I worked at a pizza parlor, and sometimes I made and rolled the dough.  The dough room was long and narrow and very white.  There was a small radio that sat on a ledge near the high ceiling by a row of windows that were far too high to see out.  Up on the window ledge a radio blared, far beyond its sonic capabilities, a radio station that had a penchant for late 80s Top 40 hair metal.  The white walls were decorated with beer and wine cooler posters, brought in by beer distribution sales reps.  All of them depicted attractive models in bikinis holding bottles of beer.  One, in particular stands out in my memory.  It had three models laying out on a Budweiser logo blanket, while wearing Budweiser bathing suits.  Somehow they had become Budweiser.  I used to stare at this poster for hours.  It’s no wonder I used to get a little aroused every time I saw a can of Budweiser.

 

Back then, I used to buy all kinds of posters.  None of them were beer posters.  Unsurprisingly, I bought a lot of rock-n-roll posters of my favorite bands.  I especially enjoyed those subway style posters, which were large and more graphic in design.  I was not really interested in posed band pictures, or live action pictures.  My most treasured poster was a massive New Order Substance poster with the blue flower thingy.  During those times, and into my early twenties, I began to amass quite a collection of great music posters, bumper stickers, concert flyers and badges.  For some reason, I never displayed them.  Those posters never made it onto a wall at any place I’ve ever lived.  None of those stickers were stuck on anything.  Those posters remained inside a pair of poster tubes for years, until I finally donated those tubes to charity years ago. 

 

When I went away to college, my dorm room roommate became a close friend and he immediately decorated his side of our shared space with Siouxsie and the Banshees and Iron Maiden posters.  The room became his.  I remember staring at giant pictures of Siouxsie Sioux and Eddie, while trying to go to sleep.  My side of the room remained blank, until about mid school year, when I finally put a small concert flyer for a band named Skin Yard that I had ripped off of a telephone pole.  I placed the flyer too high on the wall, and it was mildly askew.  Its meager presence only enhanced the otherwise emptiness of the walls.

 

I’ve begun wondering why this is.  I mean, I had tons and tons of artwork for coveted bands in posters that I could’ve proudly displayed, but I never did, nor did I have any inclination.  Oddly enough, I think it’s due to my health.  When I was diagnosed with Von Hippel Lindau (VHL) in 1985 as an 8^th grader, I think I began to see life and any lifestyle that I would ever choose as temporary.  I’ve mentioned it on this space before, but I was 13 when I decided to never have children due to the genetic danger of passing VHL along, but beyond that I think I began to be wary of getting involved with relationships in general, because I felt that they had no chance of lasting, I think I lost a lot of ambition due to the idea that I would constantly be side-tracked by continuing health crises, so I have a history of working at jobs, just to earn money, not to try to maximize my potential.  Ironically, I have stayed at jobs forever, again, I think it’s because I am always waiting for the other shoe to drop, and by “other shoe,” I mean serious surgery.  Instead of being ambitious, I just remain in place until the next surgery.  I think this notion of temporariness has affected my life on more levels than I can ever realize.  I think it is the reason why I have always been reluctant to make my home – feel like my home – something as small as decorating the walls. 

Regrets have been a huge part of my life.  I have tortured myself ever since I became old enough to make any kind of real decisions, and just now, I think I know why.  I have experienced a lot of life’s stops and restarts due to VHL and its various surgical maintenance needs, and I can attest that they are difficult and frustrating.  Yet, the fact that I have never allowed myself a sense of purpose, or home, or permanence, has been devastating.  I have short changed all of the people I’ve met along the way too.  I have a small handful of long-time friends who I grew up with pre-VHL, but I could have had more, if I ever let people in.  I think this mindset is a big reason why I have always been so slow to trust.  The more I consider this notion, the more I realize that I have lived the last 35+ years with a mentality that I cannot be a part of things, because I’ll only be around for a moment.  It’s like a life philosophy based on the idea that I don’t want to play the game at the party, because my ride will be here any minute.  It feels ridiculous, but I can honestly say that I have never made these decisions to avoid things consciously.  I have agonized over missed opportunities, due to these decisions for eons.  Looking back at my life under this new realization makes everything feel pretty damn ridiculous, but I really am that clueless!

Sadly, there’s nothing I can do about the past.  Perhaps, I can now move forward with clearer thoughts and more informed decision making, though I worry that it’s too late.  I am at that age where I should now be reaping the benefits of all of those important life decisions of the past – those decisions that I made with the mindset that I didn’t have a future to consider, nor did I believe that future me worth the bother.

 

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. 

 

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.   

 

Age of Consent

 

“My last day of work is June 30^th!”   “My last day of work is June 30^th!” 

I keep repeating this to myself.  I have been at my current place of employment for nearly 13 years, so it’s not like this is the end of a major era, but it is long enough that it feels strange to think that I won’t be going in anymore.  I am officially taking a medical leave of absence.  My goal is to get better in every possible way.  Ever since my brain surgery in February of 2021, I have not been right.  I still cannot walk.  I still struggle with control of my left side.  I still have swelling on the back of my neck.  I still have a laundry list of issues with my vision, strength, my transplant, etc.  In addition, I am now taking a medication named Belzutifan to try and shrink my VHL brain tumors, which will be inoperable because it would be too dangerous.  At any rate, the new medication, applied to my already shaky state of being due to my long history of medical issues, has been incredibly difficult.  The drug reduces my hemoglobin to dangerously low levels, which means I have no energy, feel fatigued, and feel like I cannot breathe.  The medication also makes me feel foggy, experience nausea, headaches, and edema.  I am no longer able to be the best employee I can be, no matter how hard I try.

For the first time in my life, I’ve decided to focus on getting well.  I am trying to learn to ask for help.  I have reached a point, where I struggle with day to day living.  I cannot express how difficult this is for me, but I find myself worrying if I can put together a meal, or take out the trash, or get my weekly blood labs drawn, because the parking lot is three football fields away from the hospital entrance.  It’s scary to let go.  It’s scary to admit that I’m not capable to take care of myself anymore.  As a young man, I used to daydream about the idea of living in an assisted living home.  Of having my own pad in a building that serves food and takes care of the cleaning and entertainment.  That was before I realized that the only ones worth a damn are unbelievably expensive and that giving up control of one’s life is one of the worst feelings in the world.  I probably have an unrealistic and super bloated sense of pride and control, because I’ve always taken care of all of my own stuff and have come back from a lot of set-backs.  I didn’t understand why people resist retirement homes and assisted living.  Well now I understand how it feels like being thrown away. 

Please understand, I realize that I am privileged.  I’ve debated about even telling others, because things could be so much worse, and these days, so often are.  I am honestly scared.  As I’ve mentioned in a previous post, during my brain surgery in 2021, I was completely crazy for a time.  That experience still haunts me.  I was bed-ridden for a month (two of those weeks was ordered to be immobile and lay flat 24/7).  I had no control.  No one would listen to me.  I lost the feeling of trust.  That experience still informs me.  I am especially slow to trust.  I feel isolated.  I have no plan about how to get better, or what to do in the future.  My leave is indefinite, but my work benefits are not.  Yet I am reluctant, embarrassed, and seemingly unable to ask for help, nor do I know what that help would actually be.  If someone offers help, I do not know how to accept it!  What do I ask them to do?  How do I get over my stupid pride and ask? 

When I was crazy while in the hospital, I hallucinated every night that if I drifted off to sleep that the staff would change my room and place me in places I could not get out of.  I’m sure I was a prize patient for the nurses, because I would panic.  I still panic.  I currently struggle to stand from a seated position, but am also unable to stand for long periods of time.  I feel like I am easily stuck or stranded, so I become anxious about things going wrong before anything happens. 

I am very uncertain if I am making the right decision here, but I can honestly say that working every day has been nearly impossible physically (along with the mental struggle most of us worker ants can experience).  I worry that my health decline will continue and then I could be stuck without income, and health insurance.  I suppose it is my new adventure.  Sorry for taking up your time.

Disappearing

• 
  
   

• A few days ago, I met a new doctor.  On August 13th of this year, the FDA approved a new drug that has had success shrinking tumors and cysts that are generated by the genetic syndrome I was born with, Von Hippel Lindau. (VHL).  Von Hippel-Lindau (VHL) is a genetic condition involving the abnormal growth of blood vessels in up to 10 parts of the body.  I inquired of my nephrologist (kidney doctor) about the drug, and she has recruited all of my specialists to research this new medication.  They all met with an oncologist, as apparently, this drug is classified as a chemotherapy drug.  Since the medication in brand new, it will need to be approved by my hospital’s pharmacy to bring it in.  I would be first patient to use it in their system.  It is very expensive.  That is the last hurdle I need to cross, before I will be able to start taking the drug.  The team decided that it is worth me trying, if it can shrink tumors.  I currently have 5 new tumors growing, which is alarming since I had several removed in a surgery earlier this year, in February.  I still have not fully recovered from that surgery.  This new doctor I met with told me that a big reason that they think I should try this new medication is the danger of having another head surgery.  According to my neurosurgeon, I almost died during the surgery on February 3^rd.  This was news to me.

  It was alarming.  I knew it was a tough surgery, but I had no idea that it was that difficult.  It put some things into new light.  My hospital stay dragged on for a full month.  It seemed much longer.  During my stay, I experienced hallucinations, severe paranoia, and intense fear.  In other words, I was crazy.  However, much of that time, I now realize was during the first few days after my surgery.  Like all of my previous surgeries over the last 35+ years, I always remember coming to in recovery.  This one, I do not.  Instead I remember a long convoluted conspiracy to destroy my life by an underground terrorist group that had tried to recruit me, but turned against me when their psychotic leader rejected me.  I was desperately scared, because I was helpless in all aspects.  Because of Covid-19 protocols, I was alone.  There were no visitors.  Eventually, my family was able to see me on a limited basis, but at the time, I was waging an epic battle for survival in my head against this underground force, and apparently, in reality.  There were several points, where I was in a position to decide to stay and fight, or completely give up.  I remember giving up in these visions, and feeling peaceful and calm, but still with an underlying fear.  I began to consistently surrender in these battles in my head, until eventually, I began to come back to reality.  I never fully came back, until about the last week during my stay.

  Except that I really haven’t.  Those hallucinations are now imbedded in my mind as solid and very real memories.  I find myself often filled with fear and a disturbing feeling that I can’t trust people and that there are at times conspiracies working against me.  I have to fight off these feelings.  I mean, why would there be a conspiracy against me?  Why would anyone bother?  Now that would be crazy.  I have not yet processed this near death news, nor do I believe that there’s really anything to process.  I cannot change what happened, but I am now wondering if I was giving up, but somehow survived anyway.  I have been filled with dread ever since.  Perhaps I’m living a life, I no longer want to live.

  
  

Cayman

Have you ever had one of those songs that you absolutely can’t get enough of come into your life?  It happens to most of us.  A song you play over and over again for days and weeks.  What are some of those songs?  Think about what was happening in your life during that time.  Did the song play into those circumstances or was it simply an ear worm that burrowed its way into your mind?  How often does this happen to you?  For me, it happens a few times a year, but some of them are more memorable than others.  One that especially stands out is the song “Cayman” by Mira. 

As the year 2000’s spring turned into summer I found out, first via a continuously intensifying never ending headache and then by a doctor’s diagnosis, that I had a rather large brain cyst expanding inside my brain stem (see first warnings signs story here: Road to Nowhere).  Even though the neurosurgeon told me that if I hadn’t have scheduled the MRI and follow up appointment with him that the rate of the cyst growth would kill me within a couple of months, my surgery to remove said cyst wasn’t scheduled for another six weeks.  It was during these six weeks that my life became very strange.

Having something the size of a large navel orange in the center of your head does unusual things to a person.  Besides the constant intense head pain, I began to lose feeling on the left side of my body.  Not complete paralysis, but that “my leg’s asleep!” kind of tingly numbness.  There was also a slow change in perception of colors.  Blues became yellows, greens became purples, and a lot of colors became a pale pink.  I began to crave certain chemical smells.  I began to crave the bowling alley/bus station bathroom smell created by things like generic label Pine Sol, and dirty ashtrays.  I also managed to get the hiccups for nearly two weeks without letup, which wasn’t as bad as it would seem.  They made me laugh a lot while in the presence of others.  It was impossible to get out an uninterrupted sentence, but I just kept going.  Sleep was tough, but necessary to find any kind of relief.  The other ways, I managed with the pain was to walk all the time.  It was hot out, but I had to keep moving.  It was golf too.  Even though I needed help getting the ball out of the hole (I would fall down when I bent over), it was one the rare times I felt fairly ok.  The activity must’ve been enough of a distraction to keep the pain slightly under control.

Music, my usual go to source for comfort, was not much help.  I had a difficult time focusing.  I have always taken time to listen to albums, not as background music, but as the only focus – with headphones.  This was tough to do with that throbbing beast in my head.  Also, the sounds often became grating and hard to manage, which was a nightmarish proposition that I could not comprehend.  There were a couple of exceptions.  The breezy “Bringin’ Me Home” from Mojave 3 being one.  The other was “Cayman” by Mira.  I came across this song via the Italian music magazine Losing Today and its pretty solid companion dream pop CD compilation Painted Dream II.  Surprisingly, I have no recollection as to how I ran across this magazine.  Maybe I bought it through pennyblackmusic.co.uk, or Parasol Mailorder, I’m not sure.  What I am sure is that I would listen to “Cayman” sometimes six or seven times in a row each time I fired up the old sound machine and I did not remove that song from my player until weeks after I had the brain surgery. 

There is a poignant power in the music of “Cayman.”  It builds dramatically, yet effortlessly.  It soars and glides, but is given great depth with its pounding drums and swells of buzzing guitar.  Regina Sosinki’s shining vocals fit the soundscape perfectly.  Besides being an epic song, I’m not certain why this one in particular was, not only one of the only songs I could manage to listen to peacefully, but the only one that was truly therapeutic during that time of my life.  A single song, which seems to be about a cat, managed to guide me through six plus weeks of unbearable pain and excruciating anxiety, better than anything else. 

Later that summer, I finally purchased and enjoyed Mira’s self-titled debut album, along with their other two albums (and one rarities compilation), but it was the endless plays of “Cayman” during the summer of 2000, and hundreds of times in the years since, that will always be of great comfort.  I have never grown tired of this song.  Thank you.

(https://www.facebook.com/mirathebandofficial/)

Mira "Cayman"

Movement

There is a young gal who volunteers at the non-profit I work for who has become my hero.  I do not know what issues she’s had to deal with specifically, but I do know that less than two years ago she was in a motorized wheel chair.  She would struggle with one hand to control the levers that operated the chair and she would arrive with her fellow classmates in a bus from a local High School – all under constant supervision.  I was often in a position to provide tasks for these students, as part of their volunteerism/therapy.  She was always the quietest, as she seemed to struggle to communicate, and she was seemingly the least motivated to get involved.

In the spring of 2014, I was invited to a graduation ceremony for many of these students.  I found myself overcome with emotion, as the teachers and administrators gave out awards and certificates to these kids and told stories of their burgeoning independence.  It was touching to learn about their strides and efforts made throughout their time at school.  It made me realize, more than ever, not to take anything that I do have for granted.  But then, of course, I kind of forgot.

Last Halloween, I experienced a hemorrhagic stroke.  The genetic disorder Von Hippel Lindau (VHL) that I’ve written about in these pages numerous times before ( like here) was the culprit.  I had a small hemangioblastoma that decided to burst, which, while wandering the streets, trick or treating with some friend’s kids, caused a major headache, nausea and an inability to walk without drifting sideways.  Of course, I did not know this at the time, nor did I seek medical help for a couple of days – thinking things would improve, which is strange since I was with a close friend when he had a stroke and I’ve seen the horrific damaging effects of a brain hemorrhage on my brother.

After Halloween, things got much worse.  First, I had another brain bleed and it wasn’t long before I lost the ability to walk at all, while also losing control of my left side.  I spent much of November and December in the hospital and half of January in an inpatient rehabilitation hospital. 

During these extended hospital stays, my life became centered around very basic things.  Did I have a bowel movement today?  Can I touch my nose and touch my doctor’s index finger alternately with the index finger of each of my hands?  Can I stand without holding on to something for support for 30 seconds without falling?  You get the gist.  I found myself super excited and incredibly nervous when my physical therapist had me walk a few steps without aid and I was able to do so.  I found myself overcome with a huge swell of emotion when I was able to stand and touch my left foot to a step and return it with actual control and without violently falling to my right like I had every previous time.  These tiny victories were the only things that motivated me and continue to keep me going to my weekly physical therapy appointments. 

Once again, I am now able to drive.  I am able to walk with the aid of a cane.  I am able to shop for groceries and make my own simple meals.  I can do laundry and kind of clean my apartment and myself.  Everything takes more effort than I could’ve ever imagined prior to the stroke, and it all takes a lot more time than it ever used to.  My left hand seems to continue to do its own thing, which is a constant frustration, but I am getting by.

I see that same young gal volunteering at work a couple of times a week now that I am back at work.  She continues to come in, except these days she comes in on her own.  She has progressed so that she stands on her feet and uses a four-wheel walker, in place of a wheelchair, and she travels to and from the work place on the regular bus completely on her own.  She is always bright and cheery and outgoing and she now does projects that take fine motor skills without hesitation nor does she ever show frustration.  She is amazing!  She has gained so much independence and has achieved so much in such a short amount of time.  She is such an inspiration, as she continues to gain her independence, and she has taught me so much.  I can only hope that I progress and achieve as much as she has.