Wednesday, February 26, 2014

you make me weak and wanna die, just when you said we'd try

Well, hello.
**shy wave**

I'm intimidated by my own blog.  It's with great trepidation, but also with inspiration, that I am hoping to revive La Vie.

There is so, so much to talk about, it can't all be done in one post and I think that's where some of my overwhelming desire to avoid my blog comes from.  It's like the blanket I haven't finished crocheting.  I don't really want to, but I know how happy I will feel if I just start working on it again.  I like to crochet, as I like to write....and yet?

A good friend of mine once wrote the most beautiful passages on his blog and then one day he just stopped.  He said he was tired of it, that everything just seemed so negative.  While I begged to differ:  I found his posts honest and haunting and meditative, I understand now that to be able to mix and match the words in an honest and haunting way you often have to feel a sense of that within your world, in the same way that gives form to your words.  When you feel like shit, it gets hard.  And my dear readers (I've another idea! The dedication of this blog...I'll come back to this), I have not been feeling too well.

The past year has been nutty:  lots of changes in ole Shan, most not for the better.  You might recall the collapsed lung (lobe), the many hospital stays, the oxygen, THE VENT, a short period sans oxygen post vent, and then kind of a dull and dreary but mostly boring late fall/winter.  Things were boring in the sense that facebook wasn't going wild with pictures of me from my youth because a machine was breathing for me; in fact, I think I was only in the hospital once (?) post vent?  But inside this little bod things were still a bit amok. It may just be that we had a good run, but Shanny's CF lungs (honestly, I cannot complain, they served me well) have had their day.

I used to write so openly about dying and fearing death and coming to grips with my self and my disease.  I think I did a pretty good job of it all actually, but kinda it was a bunch of hogwash because I can tell you right now that when I was writing about death at 70% lung function it was all so esoteric and deep but what did I know about dying?  What do I know about it now?  I know with much more conviction that I am a lot closer to it. I know what it feels like to pass out from hypoxia, to have doctors say they don't know how else to help you, to have to plan your day strategically around walking and breathing and rest.  But still. Still, inside, I still just feel like me.  I don't feel that death is prowling around the place waiting.  Should I?  Will I?  I expect that I would, but who knows?  Think of how many people are here one minute and dead the next.  You can't tell me they all saw it coming?  Maybe they did though.  Maybe it's not about seeing it but how long before it's upon you that you are aware of the dark sleep coming on?  That I can believe, just as how in one year my life and lungs have changed so minutely to me that it seems so fast and yet such a logical progression both in the same time - like growing hair, if you will. However if you had not seen me for some time, perhaps you might be quite surprised in the changes?

I digress.  What I want to say but haven't been able to spit out is that I am aware of the fact that I am in end stage lung disease and I admit that I am dying.  Once I began to (and can I, really?) see that blur on the horizon not as the start of a new day or of some future plans to dream about but more as the point where I might not be here any more there came a shift in perspective.  I can tell you with out a doubt that it is my love for my children that keeps me hanging on.  I love my family, I love my husband, my friends.  I know my death will upset them, sadden them.  But I don't know that I think it would change them.  Maybe I just am not able to see all the places I touch the world, that can be a hard thing for us to admit sometimes, but I do see it in my kids.  I know that they need to have a mother in their lives, and I so very selfishly want it to be ME.  As much as I fear I am fucking them up, that's MY job and I am not ready to quit. I am not ready to let some other woman do it, or their father alone, nor to place that job on my own parents. But I fear.  I fear a lot.  Letting go of fear is a huge challenge for me.  I am not afraid of dying.  I am pretty sure I can say that honestly now.  I am afraid of leaving things undone.

I have so few ways I feel I can really touch the world, but my words are one way I have always felt capable.

We read so often about pain, struggle, uprising and the fact that there is a responsibility to some to simply bear witness.  That's what I want to resurrection of this blog to be.  Just to bear witness to what life was like for one sick mom who was trying to get it right for her kids and to leave this tiny legacy behind for them to have, just the words, thoughts, the silly beating heart of a girl who maybe didn't see it coming, but had been in a slow dance with it all the same; until it's time to change partners and bow this one out.

post script:

I can't leave here in good faith with that ending.  The curtain ain't closed yet.  So on Friday I head to Loyola Medical center in Maywood, IL to have an introductory meeting with the transplant pulmonologist.  yipes!  It doesn't mean that I have chosen TX nor does it mean that this transplant team has obliged to take me on.  There are so, so many parts to this whole thing that have to come together before any decisions such as those are made.  It DOES mean that I have said Yes, Yes, I will check this scary thing out and see.  I am doing it for my kids, but I am lying if I say I haven't already climbed Everest at least once in my mind.  You know, without supplemental oxygen ;)