Blind Tiger

 

Recently, I got sucked into watching a rerun of the original Hawaii Five-O (1968-1980) television series.  Saying that I got “sucked in” is completely disingenuous, because I love that series in all of its ridiculous glory.  I did not grow up with it.  My family did not watch it, but as a twenty something kid, seeing afternoon syndicated reruns made me and some of my friends fans.  We all wanted to be as slick as Jack Lord – I still do!  The crazy convoluted plots and dodgy police procedures were common topics of conversations and debates.  I once called in sick from work three days in a row, so I wouldn’t miss all three episodes of the epic V for Vashon trilogy (long before streaming) and when I fessed up to my manager at the time, he understood and claimed he would’ve done the same thing.

 

An early episode from the series is “Blind Tiger” (1969) where Steve McGarrett (chief of the fictional police unit Five-O) has a criminally placed bomb go off while climbing into his car.  Somehow his only real injury is blindness.  He is hospitalized and helps solve the case of the vengeful bomber from the hospital.  During his stay he goes through rehabilitation to learn to live life as a blind person, and his nurse/rehab guide is none other than actress Marion Ross as Nurse Edith Lavallo.  Marion Ross would later become famous and maybe “America’s mom” as Mrs. Cunningham on the 70s TV show Happy Days (1974-1984).  Anyway, her abrupt approach and constant assistance teaches McGarrett to not only function well without his sight, but actually win a physical fight with the bomber (back to try to finish McGarrett off) in a physical therapy room.  Well, the Five-O team arrest the bomber and McGarrett’s sight miraculously returns and he is free to resume his life of being awesome.  Nurse Edith phones his room just before Steve is discharged and cannot overcome her emotions to say goodbye.  The implication being that she has developed feelings for this magnificent man.  Despite Steve’s urgings, Edith will not come say goodbye in person so he can finally actually see her.  The scene closes with her reluctantly hanging up the phone in tears.  And like all episodic dramas back then, we never hear from her as a character again, nor of McGarrett overcoming blindness.  Ross makes an appearance as a hapless and clueless accomplice with evildoers in an episode a year or two later.

When I was hospitalized for about five weeks a couple of months before my twentieth birthday, I bonded with my healthcare team.  Overall, it was a terrifying and painful experience, but dammit, even though I was in the pediatric floor with mostly babies and very young children as a grizzled and gross nineteen year old, I took great joy when a day nurse took care of me several times for a lot of those weeks.  She would come to my room with an acoustic guitar and sing me nursery rhyme type songs.  She joked that they were the only songs she could play, though I didn’t care – I was simply happy to have her there with me.  I’m sad that I cannot remember her name, because she was such a wonderful and caring person who made a massive difference during my recovery.  My mom was struggling with her health in a serious way at that time and could not be with me very much, so the nurses became surrogates that I looked to for reassurance and support.  I was sad at the time, because when I finally was discharged, I did not get to say goodbye to the singing nurse – who reminded me of my second grade teacher, the perfectly named Mrs. Love.  Several years later I saw the Five-O “Blind Tiger” episode and thought about a few of the amazing nurses who have guided me through difficult recoveries, and a piece of me hoped that they were sad to see me go like Nurse Edith was to let go of McGarrett.  I have always kind of hoped that I’d not be forgotten.  This is neither here nor there, but that may have been the first time I fully realized as a young adult that I wanted to always leave a positive impression onto any and all interaction I have with all people.  Because of our nature as humans, my failures at this goal are the ones I remember most, because I, and I think most of us, dwell on mistakes instead of successes and I hear about it, when people do not like me, but rarely hear about the positive moments (like how a lot of people are willing to complain about poor service, but stay silent when service is good).  It’s how we roll.  Somehow I’ve mostly been able to move on from these intense short-lived recovery experiences and close, albeit mostly one-sided relationships with healthcare workers, as they fade into the past and we’re all onto the next phase of life.  Still the notion of a nurse shedding a tear in silence – sad to see me go – makes me feel important, which is a rarity.

However, as I’ve written about in a few prior posts, over the past two-plus years, I have been focusing intently on the healthcare system to try to improve my physical state via therapies and rehab.  The work has been paying off.  Maybe not as much as I’d like, but I think my expectations are far grander than reality is showing.  Because of this focus, I have been seeing the same physical therapist for about two years and have been doing cardiac rehab twice a week since last November.  The staff have become a family to me and over the rest of this month I am going to lose these connections as health insurance coverage is ending. 

I’m worried.  At the beginning of May, by far the best cardiac rehab clinical exercise physiologist (CEP), Hannah (see here) left her position to become a lead at a different clinic.  Though I am excited for her opportunity, I did not and have not taken her absence well.  There has been no fading into the past and moving on.  On her final day, I broke down and cried like crazy – like I haven’t done before, in my memory.  I continue to get emotional when I notice her absence like when they brought in a new “replacement.”  What a ridiculous notion!  And now, I’m facing losing the rest of the team who have nurtured, cared for, and encouraged me.  As well as providing me with social contact – making these appointments the high points of most of my weeks.  Same with physical therapy.  Saying goodbye to Abby will be difficult.  She’s guided me through a lot of difficult times all while experiencing very difficult times herself.  I care about her and look forward to our conversations during every appointment.  In my case, Abby has been a skilled psychologist as well.  I marvel at her creativity.  I will miss seeing Stefan and Lauren at the front desk too.  They’ve always made me feel welcome and valued.  I will miss hearing Lauren call me “Christopher,” because no one calls me that. 

Writing this out makes this all seem a bit trivial, and I don’t know how I’ve become the Nurse Edith and not the McGarrett in these scenarios.  I honestly do not know what’s going on with me. The departure of Hannah has me concerned.  Makes me think of the Kubler-Ross Five Stages of Grief that we were taught in High School Psychology class, and makes me wonder why I dwell in the first stage (Denial) and then skip to the fourth stage (Depression) and ping pong between only those two stages seemingly endlessly.  I’m pretty sure I’ve been bouncing between those stages for the past 35 years.  I’ve never Accepted (stage five) losing my mom to this genetic disorder that has ravaged my family’s lives.  Perhaps it’s because I skip stage two (Anger), because there’s no one to blame, and the “why me?” falls flat because I wouldn’t wish this disorder upon anyone.  I avoid Bargaining (stage three) for that same reason.  Instead of healing and moving on, I continue flail and feel broken, ridiculous, and embarrassed.

As the month progresses, I am steeling myself for an emotionally difficult stretch and hoping I can focus my energy on continuing my health journey by utilizing the valuable tools these amazing professionals have taught me on my own and not wallow in stage four.  I’m hoping I can muster the energy to keep going at all.  Maybe when the times arrive for these tough farewells, I will be able to keep myself from ugly crying by simply disappearing.  But will I ever be able to accept the loss?  Will I ever be able to see beyond stage four and move on like those old TV shows?  After decades of watching Hawaii Five-O reruns, why haven’t I learned any lessons to be magnificent like Steve McGarrett?

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?”

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.”

Keeping a Balloon in the Air

“Go ahead and sit down,” Jaime directed after stopping the timer in her hand.  “Good job!  Do you need some water?”

It was a little early to be wrapping up that day’s session, but I was exhausted from trying to balance on the half yoga ball thing while trying to bat a balloon around.  Something was up.  Jaime was being very quiet.  Generally, we chattered through entire sessions.

She began her unbelievably fast and rather loud typing into the computer – updating my records.  This was my penultimate appointment.  Next week would be the last session of outpatient physical therapy permitted by insurance.

“You’re doing well Chris,” Jaime smiled as she glanced momentarily at me.  “Remember when you first came in and you couldn’t keep your eyes open and would get exhausted just standing for a minute?” 

“Thanks to you Jaime!” I encouraged.  “These appointments are the highlight of my week!”  It was true too.  I had returned to work three months ago and was now back to full time.  I was still using a cane some of the time, but about to make the jump to no cane at all.  Despite this, I would get really depressed each day feeling like I was no longer improving.  I was committed to my assigned exercises, but I was still struggling to get around.  Still trying to get used to having to consciously think about every step or move I made, because any lapse in concentration could mean disaster.  It was during these appointments when we would go over baseline tests that I would actually see my progress.  My hard work was paying off.  It was actually the only time each week I felt any kind of joy or relief from the mountain of uncertainty and fear weighing down on my shoulders.

“Aw, that’s nice to hear,” Jaime replied sheepishly and looked down at the floor.  “There’s not much more I can do for you Chris.  Your coverage ends next session, but you’ve achieved all of the goals you need to reach.”  I looked down as well, knowing what was next.  She was getting ready to pull the Band-Aid.  She was dumping me.   “This is going to be your graduation.  Congratulations!”

This should’ve been a happy moment, but neither of us seemed very ecstatic.  I was in a state of shock, because I relied on these appointments to keep myself going and I still felt so unsure about my condition.  I can’t speak for her, but it felt as though she had more work for me.  Like she had more tools to help me recover from my stroke, but her hands were tied by the limitations of my insurance and financial means.

++++

This last October, I found myself kind of reliving my hemorrhagic stroke from Halloween of 2015.  I was having a lot of terrifying dreams related to the experience at the same time as finding myself reading a book called A Stroke of Faith (2017), written by Mark Moore, which I received as a gift the prior spring when I attended the American Stroke Association’s local “Saving Strokes” golf teaching event (can we find any more plays on the word “stroke”?).  I also happened upon a powerful Netflix documentary named My Beautiful Broken Brain (2014), about a stroke survivor’s struggle to recover.  Mark Moore’s experience definitely rang familiar in many ways to mine, so I could relate in a very tangible way, but it was the moving movie that really got to me emotionally.  Though Lotje Sodderland’s experience was very different in that her after effects were more cognitive and less physical than mine, her portrayal of loss, loneliness, disorientation and helplessness was spot on, and brought tears to my eyes along with a deep sadness and underlying fear that a stroke could come back at any moment.  Her story, however, glosses over her recovery after a meaningful meeting with her hero David Lynch, and then provides the audience with a rundown that she’s basically living happily ever-after now.  It feels a bit disingenuous, especially after her big set-back within the film.  Which got me to thinking about most of the great recovery stories I’ve heard since I’ve joined this club no one wants to belong to.  Without question, all of them are heartwarming, but I’ve noticed a commonality – good healthcare coverage.  Moore’s story is well told, but a big part of it is how his great business success prior to his stroke afforded him comprehensive coverage, the ability to have the best care possible, and to take the necessary time to truly recover.  I also heard the story of a local woman who spoke at the “Saving Strokes” event I attended in 2016 who tearfully spoke about her 10 year struggle from a devastating stroke that left her unable to speak, read or write, and here she was publicly speaking about her journey.  She was also fortunate enough to have come from old Portland money and had a personal therapist guiding her through this journey.  Even Lotje, being in the UK, could recover at her own pace due to public health coverage.  I do not hold this against them.  Actually, their examples are not only of triumph of their spirits, but of the importance of having true reliable health insurance.

I’m not saying that I didn’t get good healthcare during my ordeal.  In fact, it was mostly excellent, once I got into the right hands.  I had some really fantastic doctors and all of my therapists (physical, occupational, speech, recreational, etc.) were exceptional, as were the rehabilitation nurses and counsellors.  What I’m saying is that our health professionals really know what they’re doing and can, with a patient’s effort and cooperation, pretty much perform miracles.  What is strange to me is that the insurance that most of us spend so much money on each year only goes so far.  The downfalls in my experience wasn’t the care itself, it was that the care was limited and had an end date before I was ready.  I consider myself lucky in that I did have insurance and help and support, but still felt the pinch financially in very real ways.  I had to return to work and learn to try to manage without help long before I was physically and mentally ready.  What about the multitudes of those who have less or no coverage?  It scares me to think about not having a safety net of some sort, because serious illness effects every aspect of a person’s life – not just physically.  Yet, as long as we have healthcare for profit as a thing, helping people will never be the end goal of these businesses – just a possible side effect of doing their business to make money for their investors.

It all makes me think about those awful weeks, after leaving the hospital, trying to pry my eyes open long enough and to summon up the stamina to address my unopened and unpaid bills, trying to read through form after form to try to secure short-term disability (who treated me like a freeloading thief), to consider looking for a way to find assisted living housing if need be, to sign up for ADA public transportation, and to navigate the nearly five day a week appointment schedule with doctors and therapists.  I could not do any of those things.  I could not do anything.  Unfortunately, I do not know how to help change things – to get it out of politics.  Maybe if everyone could feel that terror of helplessness brought on by some sort of serious health crisis for at least a few moments to understand how important true full healthcare coverage can be - to experience true empathy.  But I wouldn’t wish that on anyone.

Here's Where the Story Ends

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

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

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

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

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

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

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

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

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

“Why are you here today?”

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

Slap slap slap.

“Have you ever had this procedure done before?”

Slap slap thud.

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

“Have you had any recent hospitalizations?”

“Ready for a poke!”

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

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

“Hmmm.  I’m not getting anything.”

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

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

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

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

“Have you ever had an endoscopy before?”

“These all look like valves to me!”

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

“A little poke!”

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

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

I closed my eyes again.

“Can you cup your hand?”

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

“There it is!  Hold your hand still!”

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

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

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

“There you go.”

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

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