October 25, 2013

who shows up

     His moods are so volatile, that there is a dark anticipation amongst my wife and I that we're never quite sure which son we're going to get when we visit him.  Wait.  Let me take a step back as all of you may not have visited a mental hospital.  It is not like a normal hospital where you can come and go as you please.  Visiting hours are very limited and very strict as it's a highly controlled environment.  Only two people at a time, only for an hour, and only on certain days.  So there's a tension to make the most of the limited visits knowing that the time is limited and precious.

     This particular visit, he is in a good mood.  While acceptance of an illness, especially one of the mind dictates accepting the entire mental illness, we are only human and are grateful that he is in a good mood as those are far fewer and further in between.  Is it the 100th medication alteration that is making a difference?  Or, is it just one of his cycles?  There's no way of knowing for sure.  But we are still grateful knowing full well that the next time will likely not be as pleasant.  Regardless, he is animated, engaged and even laughing.  Laughter!  What sweet music! When is the last time I've heard his laugh?  It is as a song that is deep in my memory and have not heard in an eternity.

     "I'm the craziest one here this time," he says jovially.
     "Yeah?  How's that?"
     "Med time.  When they pour my pills out of the cup for me to take, it sounds like they're pouring a box of cereal there's so many for me to take."
     And he laughs making the hand motions of pouring cereal along with sound effects for full measure.  We've never seen him laugh at his illness before.  It's the first time.  We hardly see him laugh at all. Period. But we struggle to appreciate these moments and take them for what they are, though they be far and few in between.

October 22, 2013

the straw that broke Atlas

     I've wrestled with this before.  Don't play doctor.  Be the brother, the son, the dad, the whatever but don't be the doctor.  In a more perfect world, I could gladly cast off that role.  But when faced with these notions of "if things went better..." I like to quote from Grumpy Old Men, "you can wish in one hand and shit in the other.  Let me know which one fills up first."
     And so I keep justifying it to myself, keep trying to make it right, keep damning that I am put into this role, time and time again.




     I could not save my brother but he did die in far, far less pain because I was not just a brother.  Given my dad's situation, he may have very well died (it's a long story) if I had just been just a son.  And my son?  The story is still being written but my wife recognizes that he likely would have completed suicide if I had been just a dad. It's a foregone conclusion in her mind.  Despite all this, a fresh passage in the pages of my son's story are troubling me.
     My son needed a blood draw.  At least I thought he needed a blood draw and the doctor agreed but wanted a fasted one.  As we entered the LabCorp office, I double checked the orders.  A few tests were missing.  But the doctor did want these tests run.  I tried calling the doctor.  No luck.  My son starts to notice my hesitation.  My conflict.  He asks me, "what's wrong," sounding nervous as his paranoia is never far from the surface.
     "There are some tests left off that need to be run," I reply.
     "Just check them off then.  You're a doctor," he replies laconically.  Issue settled in his mind.  But not mine.
      I've been told, "don't be his doctor. Be his dad."  And besides, it's not my signature at the bottom of these orders.  But if I don't "play doctor" as I have done hundreds of times in the past, my son will get inferior care.  So I check off the boxes.  The correct ones as I do not guess.  I know.  I relay a message to the doctor letting them know what I did.  "No problem" was the reply.
     In all honesty, compared to all the other doctor things I've done with my family, this is really was "no problem".  A clerical error, really.  But I've been told so many, many, many times to create a chasm between being the loved one and the doctor.  And this small episode proved to be the straw that broke the camel's back.  On some level, I am angry at the people who tell me to just be the loved one.  But on a deeper level, I am furious at the universe, at God, at the situations that keep putting me in this role and forcing a choice.  Once, it happens.  Twice, and at the same time, well that's getting to be a bit much.  But three times?  In three years?  Is there any mercy or grace in this world at all?  Or, am I being punished as I wait for the fourth, or even fifth shoe to drop?  Am I cursed to play Atlas the rest of my life?

October 18, 2013

sleepwalking through a dark night of the soul

     I stumble lamely out of bed.  The only light is the soft glow provided by the alarm clock.  3:30 am.  Didn't F. Scott Fitzgerald write:
Now the standard cure for one who is sunk is to consider those in actual destitution or physical suffering -- this is an all-weather beatitude for gloom in general and fairly salutary daytime advice for everyone. But at three o’clock in the morning, a forgotten package has the same tragic importance as a death sentence, and the cure doesn’t work -- and in a real dark night of the soul it is always three o’clock in the morning, day after day. At that hour the tendency is to refuse to face things as long as possible by retiring into an infantile dream.
As I stumble to the bathroom, I notice a throbbing pain in the great toe of my right foot.  I don't remember that pain being there when I went to bed.  Half asleep and half dreaming, I turn on the bathroom light and plop down onto the floor as standing requires to much effort in this condition.  I pull my sock off and through the crust of sleep and squinted eyes against the light, I observe that my toe is red and swollen, at least I think I do.  At the time, I probably couldn't have registered the correct number of fingers held up 3 inches from my face.  My mind quickly, well slowly actually, raced to conditions which cause the great toe to hurt.  Ah shit, I have gout?  Seriously? What else can go wrong?  My brain asks my brain, "how do you treat an acute flare of gout?"
     "Well, that's easy.  NSAIDs" my brain replied to my brain.
     "But didn't you already take some naproxen for your back and shoulder?"
     "Right you are, Brain.  What's the second thing you can add?  That drug you can add to the NSAID?" my brain puzzled over.
     "Colchicine or something like that.....we don't have any of that, do we?"
     "Now why in the hell would we have colchicine???  Please try to keep up," my brain said exasperated to my brain.
     "Wait...we have pred.  Prednisone can work, too!  When in doubt, give steroids!  That's what I learned from pharmacology."
      As I rustle through my cabinet under the sink looking for some prednisone, some part of me either shuts down this train of thought or another part wakes up a bit and says, "WARNING, DO NOT DIAGNOSE YOURSELF WHILE IN A HALF DREAM STATE!"
     "Ok," my brain replied already shutting back down, and I returned to a sleep state.
      I went back to bed.  In the morning, through the haziness of sleep, I began to remember what happened last night.  Holy Crap!  Did I try to treat myself for gout???  I look at my toe and see the big bruise on the toenail.  I had smashed it on a log during a bike mishap the day before.  That was the source of pain.  Not gout.  It reinforced to me that I absolutely need to go back and finish school before I hurt myself.  I have a deep need to finish that's not even explainable anymore.  At this point, it's my Mount Everest to climb because it's there.  That climb should start again January 1.  I qualify the "should" because at this point of my life, I have no control over what other hells can befall me.  My response is if not this January, then next June.  Come hell or high water, wait, those are already here.  Come hell, high water or zombies, I will finish.

(Of note, I've done even stranger things while sleepwalking.  Ask my wife.)

October 11, 2013

my son

     His right leg bounced up and down, quickly and repeatedly.  There was no rhythm or song in it.  It was more a muscular twitch that was far, far beyond his control.  While eating his Cheetos, his fingers had a fine tremor to them.  Not the large tremor of someone with Parkinson's, but one with a very small frequency.  Again, involuntary.  It did not seem to prevent him from devouring the Cheetos, though.  His eyes....his beautiful eyes that he inherited from his mom, often stared blankly with dilated pupils across the room focusing on nothing in particular, even while talking.  Because the hospital was quite cold, he wore a sweatshirt, one purchased from his parents at REI to be used when hiking with his dad.  He had the sleeves pushed up, exposing the 54 individual self-inflicted cuts marring the inside of his entire left forearm.  Though being right-handed, even his right arm was not spared the cutting.  Life was unbearable, filled with nothing but suffering.  He wished it to end.  Now.  Maybe it was not even a desire, but instead a need, an itch that simply must be scratched.  To him it was an inclination as natural as breathing.  He had pondered Hamlet's predicament and found no dilemma at all.  In his broken and suffering mind, it would be better to end "The heart-ache, and the thousand natural shocks that flesh is heir to".

   This is what mental illness looks like.  This is my son.

October 8, 2013

stop playing doctor

With my brother, I was told repeatedly, "just be his brother." 
With my son, I've been told, "just be his dad."
With myself, I've been told, "stop trying to diagnose yourself."

     I clearly have a problem with this advice, not because I'm arrogant or untrusting.  It's because if I don't....well, let me tell my story.  My shoulder pain I wrote about is still pretty damned painful.  So my family doctor (he's one of the good guys, albeit relatively few in my experience sadly) suggests I get another opinion.  Completely appropriate given the circumstances. I'd already seen a sports medicine doctor and failed two rounds of physical therapy.  Acupuncture helps some but only for a few days.  So I went to go see a pain management doctor.  Again, chronic intractable pain = pain management.  Not rocket science, is it?  I told the specialist my story and he wanted an MRI of my neck before proceeding.  Seemed reasonable to me.  It was possible I had a disk pinching a nerve and rather then presenting as nerve pain, it was irritating my muscles.  Ok, I can see that being different but in the realm of possibility. 

     So I dish out nearly $900 for the MRI and lo and behold, I do indeed have a bulging disk in between the vertebrae C6 and C7.  It's not huge or anything but it is there.  The arrow is pointing to the bulge. 

     So I go back to the doctor to "get the results" even though I've already looked at the images myself.  But I follow the advice and don't diagnose myself.  Personally, I don't think a bulge that size is causing all the problems, but hey, that's me.  Leave it to the professionals, right?  The pain doctor tells me, "it's possible the disk is causing it, it's possible it's not."  If it is, a steroid shot is in order but because it's in the spine, it involves the OR.  Whoa, that sounds expensive.  Let me find out how expensive this is first, because my insurance sucks.  I wait a day and discover that it's going to cost me close to $2,000 for something that might help.  Well, when you're in pain all the time, you're willing to try damned near anything so I was sorely tempted.  But the frugalness in me won out.  I declined.
     So I wallowed in pity wondering was I doomed to be in pain, both physically as well as emotionally, the rest of my life.  But something bugged me.  I threw off the "trust the professional" mantra and instead cast on, "physician, heal thyself", aka "I'm right, damnit."  My bulging disk, if affecting nerves, would be hitting C7 nerves because the nerves in the neck exit above the vertebral disk, ie C7.  Problem is, the biggest and baddest bulging knots were in my trapezius, rhomboids and levator scapulae.  Um, Houston, we have a problem.  The nerves that feed the rhomboids and levator scapulae exit at C5 higher up.  And the nerves that feed the trapezius exist even higher up from the skull.  That's like going out to the breaker box on your house and tripping the switch for your garage but having the lights upstairs go out instead.  Unless you're wired wrong, it doesn't make anatomical sense.
     So I almost spent $2,000 of money I really don't have in desperation because somebody forget their spinal anatomy as it relates to muscles.  Damned doctors.  So I'm left without an accurate explanation of why the muscles on the right side of my back are so angry that they are visibly swollen.  While stress may play a role, I seriously doubt it's causing my shoulder this many problems for the simple reason that I threw out my lower back simultaneously and it got back to "normal" in exactly the same amount of time as usual.  I don't think stress is so selective.
     I'm going back to my family doc to brainstorm.  At least I know I'll likely have a C7 problem down the road.  That's something fun to look forward to.

October 3, 2013


I've had three posts titled using similar letters - 2s and Bs.  I'm not trying to bore readers or prove I'm losing it (well, that may be debatable).  They all relate in an emotional progression, I can assure you.  It might help if the numbers and letters where actually translated into some meaningful English.

The first one BU2B = Brought up to believe.
The second one BU2B2 = Brought up to believe part 2
The last one 2BR02B = To Be, or naught To Be

The first two are song lyrics by Neil Peart.  Being a voracious reader, I knew his song title was used not as text-ese but must instead relate to a piece of good literature.  I finally figured it out that it tied back to an old short story 2BR02B by one of my favorite authors, Kurt Vonnegut.  His title obviously ties further back to Hamlet's famous dilemma of which I wrote earlier.

From Hamlet to these three more modern writings, they all relate to a progression of my worldview as well as my inner view. 

The first song BU2B, relates very much to the attitude we were raised with from my dad.  My brother and I both even talked about as he neared death.  My dad has (or had, maybe it's changed) an unshakeable belief that things will always work out for the best.  To my brother and I growing up, we both envied his belief as well as thought it bordering on irrational.  But in the mind of my father it was unshakeable.  It was one of his major guiding principles in life.  As my brother got closer and closer to death, that notion began to unravel for both myself and my brother.  Things were not working out for the best, or at least in the sense that we desired.  One of the core beliefs that was modeled to us from an early age was shaken to its core and blew away in the wind from our perspective.

The second song BU2B2, was one of my mantras as I grieved my brother's loss yet discovered deeper ways of being compassionate with patients as they struggled with their own health and problems.  It allowed me a sense of feeling utterly and completely lost, while still feeling some purpose, if that makes sense.

And if you read Vonnegut's short story (which of course I highly recommend), you'll get a sense of what extreme lengths a father will go to for his children.  I don't always have the words or strength to write about things openly so I'm left with allusions to others who are better writers.

As it's an open domain story, you can read it here at the Gutenberg Project 2BR02B.
Or, you can also listen to it as an audiobook for free on YouTube below.