Friday, September 28, 2012

Why Do Doctors Say Stupid Things?

     About six months ago I went to see a neurologist.  Not just any neuro, this guy was Chairman of Neurology at a major hospital and college,  and had been for umpteen years.  I can imagine the various degrees of ms and it's complications that have made it into his office.  I anxiously counted the days until my appointment only to conclude afterwards there needs to be a "jump in my body button" that I can press when a neurologist rolls his eyes to patient ideas and recollected once again just how immune these guys are and how they don't get it, especially when asked an opinion of any therapy outside of the "box."
     I had waited several months to visit this neurologist.  Unless a patient with ms is having a severe life threatening attack, then it is typically hurry up and wait.  Imagine having a cut in your finger requiring stitches and having to wait a month to get it stitched.  Naturally by then it's too late and hopefully it will heal on it's own.  Now on a grander scale imagine being unable to walk, and waking up one morning and feeling that the paralysis in your legs is creeping upward above the waist.  Panic and anxiety quickly control your mind and the sensation becomes more pronounced.  Your stomach churns, your palms sweat,  your eye twitches, the numbness in your already numb hands increases, you lay in bed unable to jump up and grab the phone, horrified you watch the clock from the current time of 6am until the neurologist office opens at 9am. Youkeep your cell in bed for emergencies and start calling at 8:30 just to see if someones in, but the answering machine tells you nobody is there and explains that  if it's a life threatening emergency call 911.  Hmmmmm.  Depends who is defining life threatening, considering you can't even get up on your own it sure as hell is threatening and not much of a life.
     Finally 9am rolls around, you dial repeatedly but keep getting the machine.  Now feeling hopeless and helpless you continue to hit the redial finally connecting, but only to find there are seven callers ahead of you! What! Anxiously you wait your turn, a human finally answers, she is chatting with a colleague and finishing a laugh as you acridly explain the whole situation.  "Medical record number please" is all you get from the other side.  Medical record number?  Please I am upside down with fear and just want to get in there, thinking for some crazy reason that the neurologist can actually help you.  Your first mistake.  "Lady please can you find me some other way?" "Name and social security sir?"  This is when I want to hit the button.  Jump inside lady, feel paralysis then let's see if you can feel me and try just a little harder you machine.  "Ok, I have found you, " callously she remarks.  "What seems to be the problem." Again you repeat the entire episode, as if the clerk is going to help, you picture in your mind telling the story to a tree outside and getting more of a response.  Without as much as a single sympathetic word you receive a " hmm" let me see.  "Doctor has an opening November 23rd!"  Doctor, I love it , as if he is some iconic world renown perfection.  Can't he just be The Doctor?  Great a month away.
     The fact that you have this creeping paralysis is NOT an emergency.  It is unfortunately standard ms progression, and is no shock to anyone other than you and those close to you..  So you book the appointment for a month away, hang up, and lay there, immobilized, alone in your thoughts, horrified, still paralyzed, wondering how you will get through the month, again believing, tricking your mind that you will actually get some relief when you finally do see the neuro.  Welcome to ms, the incurable, seething, loathing, frightening, cowardly, life sucking disease and it's medical society associated with it.
     So back to this neuro, I wait months to see.  "Doctor" will finally see me now.  The anticipation is killing me as for some odd reason I think to myself this is the guy that is going to help me, momentarily forgetting that 150 years has passed and aside from a pipeline of  symptom management fallacies and expensive drugs with side effect profiles a mile long the ms train keeps chugging along.  During the appointment the Chairman of Neurology ensues his run of the mill standard neurological exam, equipped with a $.30 safety pin for numbness testing purposes, all the while formulating his theorem before I am allowed to tell my side of the story.  "Please wait until I have finished my examination", he remarks.  Can't this guy do two things at once I think to myself.  Squeeze the fingers, tap the hands, follow the finger, same old shit.  Finally his interpretation reveals a stroke of genius.  The ms is advancing and there currently are no therapies for the progressive form of ms.  Only symptom management, again the biggest sack of bullshit in the world.  I would call it sedation rather than symptom management.  Take four of these every six hours and stare at the wall while someone wipes the dribble from your lips.  Body button please.  Jump in and feel what I am feeling, and then tell me this .  So I throw out a few "alternatives", outside of the ms protocol. Things like stem cells, CCSVI, LDN, antibiotics.  Wadda ya think?  No sooner than the words left my mouth, Doctor gave me the old librarian look.  You know the one where the eyes glare at you above the glasses, chin at the chest.  "None of these theories are proven, for example we know very little of stem cells, and,there is the possibility of growing a bone out of your chin or something!" WHAT THE F I think?!?!  Three cheers for the chairman! Genius!
     This Sultan of Neurology went on to tell me how in 46 years he has never seen a patient in the advanced stages make recoveries and only very subtle improvements.  Boy what amazing encouragement, and how dare you say something so negative and hopeless to a 44 year old man clinging to any hope he can find, his golden years stripped from him by this thief ms.  Where is that button for this mother f'er.  Feel this!  Feel what I am feeling then say that!
     So back to the car, tail between my legs, doing my best not to get depressed, letting out a cry and some obscenities, I think to myself  how a Dr can feel good about himself, saying such stupid things and other than a handful of scripts, giving me the same old nothing.  I guess being in retail my entire past working life, and not allowing a customer to go without being satisfied, I cannot imagine such shitty and worthless customer satisfaction.  Worse off I am not talking about a ladder here, I am talking about life.  Human life, feelings, family, survival, and all that goes with it.  Just getting to the appointment is a daunting task, getting a kick In the ass is so inappropriate
     Hope is all we have.  When told that there is really "nothing" to rectify this paralysis, it is easy to just say the hell with it and give in.  Giving in is not an option.  Let God ultimately take your breath away. Not "Doctor."  As difficult as it is remain focused on a goal, on the ultimate prize, keep going and be thankful for what you can do.  I have to remind myself this all the time.  I slip into the suck every day, and somehow comeback, but need reminding constantly.  I tell ya, it really hit me in the face when Dawn, a reader from North Carolina, a mother and caretaker for her paralyzed son who cannot talk reminded me how lucky I am to be able to speak.  Think about that for a second.  Who doesn't take speaking for granted?  Next time you blurt something out, think about how lucky you are you can talk!  As crazy as it sounds.  She would love nothing more than to have a conversation with her son.  Sure I get my share of bedtime, but at very least I can explain to Mom and Dad how I feel and have a conversation, even if it is from bed or whatever.
     If you haven't already, start appreciating what you can do and what you have, ignore hopeless chatter from the medical world and for God sakes as Jesse Jackson put it so eloquently, KEEP HOPE ALIVE,
      I leave you with a video of my friend Brock, who was told by his doctor that he would never walk again after a horrific accident left two dead including his father, and paralyzed Brock from the waist down.  Living on faith, determination, grit and super hard work, good friends like Mike Barwis who believed in him, Brock will be strolling down the aisle in the near future, regardless of what "Doctor" said.  You are the man Brock.  By the way, he has come even further since this video, much further and can walk unassisted several hundred feet.  So there!

6 comments:

  1. What horrifying news to receive from someone you had such high hopes would help you. Shitty card we pulled. At least these interwebs connect us in our battles. Keep on keeping on.

    BTW: The video states it is private and won't play.

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  2. George, isn't it amazing how doctors can think that their way is the only way? We have also run into the same "god complex" with Ryan's cancer treatment - if it's not a practice written in a thick medical book, it must not exist!

    Praying for you to find peace in the moment, and yet at the same time, praying for an answer.

    -Kendra

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  3. I'm so sorry he spoke to you so horribly. Why can't they try to understand what it's like to hear words like that? Have faith and don't listen to his words, doctors have to take a step back and realise they don't know everything and have no right to talk to anyone like that.

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  4. FYI to all readers. The Greek has been in hospital for two weeks. It has been an ongoing time of real suffering for the past month. Hopefully, he will share his story again soon.

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  5. Thinking of you often and praying for you. Your posts really touch my heart. To know someone else has the same thoughts and feelings is so comforting as we walk this damn MS journey. I just don't feel so alone. Please keep us updated if you can. Thanks mom-(Hilda)- praying for you too.
    Dee/OHIO

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