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.