Posted by: Kate | August 26, 2010

Knight in Shining… T-Shirt

It would be very, very hard for me to quantify just how important my relationships have become, ever since I got sick.

They were always important, of course, and I always worked hard to foster the friendships and family ties that mattered the most to me: I would call, arrange get-togethers, invite them to parties, send gifts of varying value and relevance, just whatever seemed right at the time.  But at the same time, I was always fundamentally independent, comfortable in the knowledge that I could operate on my own pretty comfortably if need be.

Then March struck.

Since then, I’ve been dependent on people in ways I never imagined.  Physically, medically, organizationally, rationally, recreationally… I can’t think of a single area of my life that has not been impacted by the illness and its subsequent effects, and many of the ways I have been impacted have forced me to depend on other people, whether it’s to drive me around or remind me of old stories or change the dressings on my wounds.  I haven’t been able to even imagine operating on my own, for more than a day at a time.

Of course, the most important relationship I’ve had, through all of this, is with Willem.  His was the first face I saw when I awoke from the coma, and he has hung in there through breakdowns and setbacks and advances and successes.  Way, way back in the Dark Ages – when we were still merely dating and had no idea of just how much life had in store for us – I can remember telling him, “You need to learn how to stand up for me sometimes.  Sometimes I could do it but don’t want to, and other times I just can’t.  You need to recognize those times and step in for me if we’re going to make this relationship work.”  I didn’t expect him to be psychic, but there were certain situations – such as, with his ex-girlfriends or his family members – when he really needed to serve as the key player in that particular drama.

That was hard for him, for a while.  He has always had sort of a mixed reaction to conflict; he’s willing and able to wade right into a good old-fashioned debate with me, and to stick around if that debate morphs into an outright argument.  So, between us, it felt like he was pretty comfortable with conflict.  But then, around almost anyone else, he avoided conflict like the plague.  He wouldn’t set boundaries with his mother, he let old girlfriends question my presence in his life… he wouldn’t even send back an incorrectly cooked steak.

Over time, he got better.  And by the time March descended upon us, he was as supportive and protective as any husband could possibly be.  He has just done a fantastic job of simply doing what needed to be done, without a word of complaint to me.  He has an uncanny ability to recognize when I’m facing a task I can’t handle, and then to step in and help without appearing condescending.

So it should come as no real surprise to anyone that he stepped up and took the next step, when it came to the outrageous behavior of Dr. Jerk and his clinic.  It took several days and too many phone calls, but he has arranged a meeting with Dr. Jerk, Dr. Jerk’s supervisor, my VNA nurse, a representative from MGH’s Office of Patient Advocacy, the Chief of Surgery and anyone else we care to bring along, for the purpose of discussing what went wrong with my case and how they can better serve patients in the future.  (Oooh, wait, I know! I know!  They could… call them with lab results! Naahh, what am I thinking?  That’s far too radical.)

I’ve already organized an appointment with a different wound care center, so regardless of the outcome of that meeting I won’t be returning to MGH.  But it’s nice to know it’s happening, that someone will actually listen to the concerns we’ve been having over the past few weeks.  It’s nice to think that maybe some other patient, some other time, will have better communication and an easier time with scheduling, if we let the doctors know what this experience has been like for me.

And it’s really nice to know that I don’t have to attend that meeting, if the idea of sitting in the room with Dr. Jerk and telling him what he did wrong – and listening to his defensive rationales for his behavior – becomes too much for me to handle.  I could just write out a note authorizing Willem to speak on my behalf, and I know that he will not only go to that meeting, but he’ll do a good job of it.  He’s not much one for wearing a suit of armor, but he’s doing a damn fine job of protecting and defending nonetheless.

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Responses

  1. Ugh, maybe you can help someone in the future, that is definitely a positive thought through all of this. God bless Willem!

  2. You are so blessed but I think you know that. I wish I had someone who would stand up and defend me to anyone including his family.

    I know this whole thing has sucked but great growth and a better understanding with your spouse is one of the good outcomes. The baby is another. HUGS!!!!

  3. Hooray! I’m so glad MGH is going to get some kickback and that YOU don’t have to be there. Dr. Jerk needs a major course correction.

  4. Willem, if we ever meet, I am so buying you a beer, or twelve (not to be drunk all at the same time, of course, but you know what I mean) as a small token of my gratitude.

    You are a lucky, lucky woman, Kate.

  5. Kick ass Willem!

  6. I don’t suppose you could sneak a camera or a recording device into the meeting? I’m with Joan. Go get ’em.

  7. What a wonderful advocate you have in your husband. Give him an extra big squeeze! He can really give Dr. Jerk a great big helping of Nasty Ass Medicine to choke on. I am so glad you have him help you when your down walk beside you the rest of the time!!


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