"He said I was unequipped to meet life because I had no sense of humor."

Wednesday, June 13, 2012

What Support Is

More than any other post I've written I thought and stressed about that last one.  I asked C if I was over-sharing (a few times), and she suggested that I might relax about the whole blog thing and to not over-share worrying about it.  That people would be supportive and would be interested in knowing and so on and of course she was right.

In the twelve years or so 'AK' (after kidney? I'm experimenting) I've been overwhelmingly supported in lovely, pragmatic, real and non-pitying ways.  I remember thinking that the initial attention and support (both welcome and uncomfortable) would wane just in time for me to lose direction or fall apart entirely.  Not the case.  I suffered my quarter life crisis like everyone else and adjusted to the new post-undergrad world in quiet, nondescript ways.  Without fail folks have been available to me in just the way I would have wanted and have tried to be available myself.  I did not become 'that guy who had the kidney transplant' except to save distant acquaintances who lacked better conversation topics - and really, health is as good a conversation topic as any, if a little premature for people my age.

But to this day I struggle to talk about this or that issue being hard or troubling.  It has been tricky to self-advocate when my emotional well-being is at stake.  On matters of health I have been a vociferous advocate for myself; I ask questions, make suggestions and have filed complaints.  I consider myself a great patient, I try to have a sense of humor, to be light hearted, to be empathetic to my caregivers - but I am not shy about pointing out when something is wrong.  But so long as everything is going 'right,' I struggle to bring myself to talk about how uncomfortable or painful a procedure was, or how lonely it can be in a hospital.  In fact part of what made me feel like a great patient was that I did not talk about (I have to force myself to not use 'complain') how I have struggled.

Good nurses ask me how I'm doing - they know how I'm doing, they are just giving me an opportunity to share it - and I say I'm doing fine with a smile.  And they smile.  And for a bit there it is fine, just two folks bumping into each other, saying hello.  There is so much reenforcement for putting on a brave face, I was commended over and over for handing everything so well.  Largely I think I did handle it well.  And I believe my positive attitude helped me through the tough spots.  The tough spots I remember are a limited bunch amid a wide range of clinic visits, procedures, and major life adjustments.  I feel like I've navigated this experience well.  Yet the flotsam remains, and no one is a rock.  Or an island or whatever.  Porcupine.  So given this history of supportive friends and family and a good attitude welcomed by my caregivers, why have been I so reluctant to delve into the story in more than cursory ways?

Geez that's a big question.  Maybe it's time for a little tangent.  I mentioned the numbers game yesterday - that the thing to do now was wait for lab results and take it from there.  I had a dream this morning that I got a call from someone named Kevin at the clinic who told me, with evident relief, that my numbers were down to 1.95 and asked jokingly what I was doing with those numbers.  You silly man! What are you doing with your numbers!  Goodbye Kevins!  Then I was in the basement of my childhood home with life-sized pictures of underwear models from department store ads ....

No, I can't do this topic justice.  Not yet at least.  If six fig newtons can't get me there nothing can.  Too many gender rules, too much family history - it would take more therapy than I can afford right now.  Perhaps its enough to say that accepting support is what I am working on right now, and it is no small task - even in relation to the thing I am receiving support for.  I have survived this ordeal so far, and with some grace.  It is complicated and difficult to be vulnerable.  Publishing that last post, and now this one, brings me closer to the heart of this experience as much or more so than waiting for lab numbers.  Which by the way remain forthcoming.  I guess I'm saying that for me the lab numbers are secondary to my sharing the story.  The numbers will be what they will be and my next few weeks or months will play out accordingly - there is little I can do to affect that.  My struggle is to remain small and vulnerable in the face of this.  Like the last fig newton.

Thanks for reading!  

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