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Trapped in a Kafka story.

Posted in Health

hand through roofFor all my faults, I turned out to be one of those people who constantly strives to find the good in others, who tries to imagine how it would be to walk into someone else’s shoes, who thinks we all have redeeming qualities. But, in the last few weeks, the world has been testing my theory.

A few people are downright evil (see Paris), some will go the extra mile no matter who or what but the majority just doesn’t care beyond their little patch of selfishness. As I meandered the paths of mind-boggling bureaucracy, dealing with insurance companies and medical providers, with as much poise and calm as I could muster, I talked to more faceless voices than I ever cared to and I reached the sad conclusion that the world is filled, if not with downright assholes, certainly with humans who bask in their mediocrity and un-helpfulness, cloaked by a veil of un-accountability.

The experience gave me pause. Have I been one of them too, at one point or another? Possibly. It’s easy to brush off faceless strangers, to look the other way on the subway, to keep on walking without acknowledging suffering, distress or difficulty. We all have enough on our plates. Only, now I have cancer and my determination to embark on this adventure on my own terms and with a modicum of control has made me keenly aware of the lack of compassion that a mindless, maybe unrewarding or boring job can breed. But, as it is my cancer, I feel entitled to gripe about it. When I heard horror stories of people being put through hoops by their insurance companies, I nodded, commiserated and moved on. Now that it’s my skin trapped in dumb bureaucracy that is not moving at the pace I require it to move, I feel enraged.

Everyone is telling me I need to keep calm, I cannot fall prey to stress, not now – but I have decided to hold on to my rage for as long as it takes, for it is rage that mostly compels us to action. Once my cancer has resolved, once my little patch has been tended to, I know I will be inclined to return to my life and my habits. What do they say? Move on. Only, I am not planning to. I am documenting every phone call, I ask for first and last names, I jot everything down so that I will be able to lodge as many complaints as I need to, to as many boards as I can find, in the hope of making a sliver of a difference for the next person who comes along and finds herself navigating the same waters.

When I was young, I am sure I wanted to grow up to make a difference. Along the way, maybe I did. Not on a grand scale, perhaps, but for some of the people I came in contact with, at different entry points along the way. Even now, when I volunteer at the hospital, I try to respond to patients’ requests in a timely manner and with a smile: sometimes their requests are easy, other times I don’t know the answer or I can’t remove the IV, or move the bed, or give them coffee. Whatever it is, I always follow up – I always go back into the room and explain the patient or their family why something can’t be done, or to whom I have passed on their request whenever it’s something beyond my means. I make myself accountable because it’s the least I can do for someone who is stuck in a bed, stripped of control, worried, powerless and sick. It is not hard. It requires very little effort and it goes a very long way.

malibu rainbowWhile wasting time on Facebook, I came across one of those little stories I would normally brush off as “feel good Facebook fluff” – given my vulnerable state, this little story stuck around.

An old man walking on a beach strewn with hundreds of beached starfish sees a little boy picking up the fish, one at a time, and gently putting them back in the water.
He stops and asks the little boy why he is bothering, there are too many starfish, his effort won’t make a difference.
“It made a difference to this one” the boy replies, pointing at the one he is easing into the ocean.
The old man takes his shoes and socks off and starts helping.
Soon, someone else walking by joins them and then another and another.
The moral being, sometimes all it takes is for one person to start.

Most of us are rarely that first person. Because it’s late and we have to run home, because we don’t get paid enough, because we just don’t care.

As you read this, I will most likely be under the knife or just coming round from the anesthesia. Yesterday the anesthesiologist called me to ask me a few routine questions. He seemed utterly disinterested in my irrational fear of anesthesia, of not waking up. “You will be awake ten minutes after the procedure is done” he reassured this kook.

Well, I am planning to, because I have a bunch of letters of complaints about uncaring bureaucrats waiting on my desk.

 

Top image courtesy of Michele Ferrari

Rainbow image courtesy of the Malibu Farm

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9 Comments

  1. First thing’s first: I hope surgery went well.

    As for jolting down names, I commend you – I think a lot of people do a mediocre job because they know they’ll never be accountable. I am in the process of quarrelling with a courier service that sent a parcel I was expecting to the wrong address; they said the driver refused to go back to retrieve it because he was sure he didn’t make any mistake, and when I pressed on, he sent me a photo of my door – the wrong door. Now that we know I’m right, I won’t rest until they do something about it. Why? Because I’m stubborn, and because I really want these people to think twice next time they refuse to admit they might have made a mistake. Most people would call me silly and tell me not to bother, but this is something I *need* to do to keep my sanity!

    November 26, 2015
    |Reply
    • camparigirl
      camparigirl

      Surgery went very well….and you will read about it. Writing it in the hope of lessening someone else’s burden who might be going through a similar experience.
      If you had to ask my mother what my worst trait is, she will probably mention stubborness at the top of the list – frankly, I am quite proud of it. You go girl!

      November 26, 2015
      |Reply
  2. Ellie Toffolo
    Ellie Toffolo

    As one of the people you made a huge difference to when we were working for the same company and you were responsible for several other young women and me, who all got on wonderfully because of it, may I say that we are all thinking of you deeply. You deserve the best.

    November 24, 2015
    |Reply
    • camparigirl
      camparigirl

      Thank you Ellie. You are always so kind and I miss all of you (even if you have made feel your presence known recently, for which I am ever so grateful).

      November 26, 2015
      |Reply
  3. Wishing you all the best, Campari Girl!

    November 24, 2015
    |Reply
    • camparigirl
      camparigirl

      Thank you Susan! I lived to tell the tale…

      November 26, 2015
      |Reply
  4. Break a leg as they say in the theatre. Not literally though as the insurance companies would be involved there too.
    I do envy those with access to the UK’s National Health system although that is under severe threat now and looks like a few short years from now they will be up against the same as we are here. But in the US we’re fighting against a capitalist system where our ailments must make someone somewhere money for them to care and that’s a scary thing. You deserve the return of the good karma you have been distributing.
    Looking forward to hearing from you post-op!

    November 24, 2015
    |Reply
    • camparigirl
      camparigirl

      It’s so disgusting. The amount we pay every month for our “wonderful” plan should ensure that a cancer surgery is approved as a matter of fact. Coming, like you, from a country where a public health system has been in place for decades, this capitalistic approach to healthcare is even more mindblogging. Sure, my hospital has all the bells and whistles (and yes, I am very grateful) but all we need is to be taken care of in a competent and speedy manner. And you can probably tell from my raging I am alive and well. But more tomorrow.

      November 26, 2015
      |Reply

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