Showing posts with label Physical Therapy. Show all posts
Showing posts with label Physical Therapy. Show all posts

Tuesday, June 16, 2026

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?




















Wednesday, November 16, 2022

Talk to Me

 

I cannot put pegs into these slots 

If any of you have stuck with me on these random posts I share every so often, over the past ten years or so, you’ll know that I’ve shared a lot of tales regarding my medical history.  I’m sure it’s not very entertaining, but it’s been my way of dealing with it.  Writing about my medical experiences helps me deal with them emotionally.  None of it is intended to create a pity party for me.  It is to get it off my chest, and by chance, by sharing my experiences, I might reach someone that may be helped!  I would be astounded.  I also like the idea that it might create connection.  It rarely has, but perhaps one day. 

Currently, I am in a strange place.  I was on a new medication that has been pretty successful at shrinking tumors caused by the genetic syndrome I have (VHL).  I began taking it in March of this year.  It did cause minor tumor shrinkage by May, but for me, the side effects were tough to handle.  I began to regularly struggle to breathe, and started to have occasional chest pains.  The doctor lowered my dose.  My next MRI, showed no tumor change by August, which seemed promising, yet the side effects made life unlivable, so my oncologist lowered my dose again.  This seemed okay, until September when the side effects kicked in again!  So bad, the chest pains were worse than ever.  I started having days where I could not do anything at all, because of the pain and lack of oxygen in my blood stream.  Turns out I had developed atrial fibrillation.  My heart was beating irregularly and way too fast.  One day in October, I actually ended up going to the ER, which seems to be called the ED now.  Now, I’m no longer taking the medication and my most recent MRI, early this month, shows new tumor growth. 

At this point, I honestly don’t know what to do.  I’ve been told that another brain surgery will be too dangerous, I already know that uncontained tumor growth will lead to paralysis, incredible pain, and eventually an agonizing death.  So, what should I do?  The medication is too harsh to take.  It’s intolerable.  I’ve been in mourning, while I try to accept the idea that I’ll have a rough road ahead.  I’m not done fighting, but I need to prepare for an unpleasant and possibly deadly near future.

Again, none of this is intended to elicit sympathy, it is simply my reality.  Besides possible connection with people, I am looking for understanding and support.  I am honestly, exhausted about unsolicited advice from people who clearly do not understand or try to understand my situation.  I do not believe that my problems are any worse than anyone else’s.  In fact, I am working hard to acknowledge my great fortune in life.  Everything could be so much worse. 

All of us have problems, it’s a part of living.  I get incredibly frustrated when people try to compete over who has things worse!  Is that what you really want?  Do you want to win at misery?  I certainly don’t, nor do I think I would.  There is a narcissism there that I cannot relate to and that I find incredibly frustrating.  Because of my experiences, I am actually very empathetic.  I take people’s troubles very seriously.  No matter what the troubles may consist of.  Being a patient in the hospital for long periods of time can be frustrating and difficult, but mostly humbling.  Your privacy and personal space are constantly invaded.  It’s like a chance to live like a helpless infant, but this time you will likely remember it – vividly!  As a side effect, at least for me, it takes away a lot of bullshit fronts that we all build up over time. 

 

Therapy is always all smiles

I have lost friendships as my health has declined in recent years, and more so, find that I don’t hear, nearly as often from my friends.  I don’t blame them, because I cannot do a lot of the things I used to be able to.  I wish it weren’t so, but it is reality, and another thing for me to mourn, along with mourning of the loss of that old functionality.  I get tired and very frustrated by fumbling around and struggling in an effort to do simple tasks.  And you know what?  It’s not pretty.  I try to be patient and positive, but endless hours of Physical and Occupational therapy exercise over several years have made very little impact.  I get incredibly angry and my neighbors are likely exhausted from hearing me shout exclamations through the shared walls of our apartments.  Everyone chooses their own path, and if I’m too much of a bummer, or no longer am that go to guy for a companion at a live show, or out on the golf course, or whatever, I respect the choice to take me off the list.  However, and most important, I want to thank everyone who has stuck by me over the years, I cannot thank you all enough!  Your generosity has kept me afloat, and that is incredibly humbling as well. 

I’m not sure what else I really want to say, other than a little understanding would be nice and incredibly comforting to me.  I am upset and angry enough.  Like I mentioned before, it helps me get my anxiety under some control, if I write about these things.  I have a lot of fight left in me!  I’m simply uncertain right now, and frankly, scared.