Thursday, January 13, 2011

I've got nothing to say but it's ok

Good Morning.

One of my absolute favorite Beatle songs.

And the line: I've got nothing to say but it's ok?

That rings true to the depths of my soul. It's not who I am yet but it's who I want to be.

This kidney journey is forcing me, yet again, to face things I haven't faced before, to stare down the unknown in a High Noon stand off, to accept what is. Because, really, what else is there once you get past the past, the future, the drama, the stories, the what ifs, the spin.

And every step of this is about being ok with where I am. That's all I can do, all I can be.

Having said that, I'm not there yet. But I have glimmers.

The transplant social worker blew my mind three times yesterday and gave me important tools for this journey.

1. As I was descending into panic she told me to look at my history. That I'd always been ok in the end and I should know I would be this time too. Brilliant.

2. The way we function in our lives, the way we cope, deal, process, avoid, we learned by the time we are 7 years old. Anxiety and compartmentalizing? My life began with those and I've internalized them to be my own. The good news: it doesn't have to stay that way.

3. All my experiences are a fabric that is me. Everything contributes, molds, shapes. It all plays a part somewhere.

It had been a long time since I'd had one of those types of conversations. I've chosen to stay away from therapy because I don't want to delve into the pain and the past again.

I realized, though, how far I've come. And how this kidney journey is a part of my story.

Donating is not a choice. It is what is.

And it's ok.

Wednesday, January 12, 2011

a fruit basket makes a lovely gift

I'm giving the gift of life. 

People kept saying that to me today. I'm giving the greatest gift there is. 

Thinking back, I think that's what panicked me. As I sat with a social worker after hours of talking with a nephrologist, the transplant coordinator, and the donor advocate I was on edge. Barely holding it together. I could feel the edges of panic creeping into my consciousness. 

It won. 

I had to ask the woman to please stop talking so I could fight back the rush of heat, the stomach clenching, the unbearable fear that I'd have a total breakdown in her office. 

The gift of life? That's too huge to wrap my head around. But so were too many of the other topics that were covered. Blood clots. Kidney rejection. Life insurance policies being canceled. Health proxies. Pre-admission cat scans. IV's. Catheters. Post op tremors. Family medical history. My battles with anorexia and anxiety. Probabilities of dialysis for donors. 

And, of course, death. 

I explained to the social worker that my best coping strategy in life is compartmentalizing. That and not digging too deeply below the surface of things. 

Today, they all dug for me. 

I don't want to think about what ifs in the same way that I don't really listen to the stewardess's emergency options presentation. I know these things exist but minutely scrutinizing is too terrifying. For me. For right now. 

By the time I got down to the lab for 9 vials of blood to be drawn it was a true pleasure to talk to the technician about how her 19 year old daughter doesn't appreciate her. To talk about something that wasn't me. 

I'm used to taking care of everyone else. Having all these people concerned only with my well being was unnerving. Disconcerting. 


I prefer not thinking about this in such enormous ways. Perhaps I should refer to my kidney as a fruit basket for the time being. 

Monday, January 10, 2011

first kidney freak out

Last night I lost it. Lost it in a deep, dark, crying so hard I couldn't imagine stopping sort of way. I was feeling so down about myself - negative, hopeless, lost.

I used to be like that most of the time and now that I'm not, just grappling with the edges of my dark side totally unnerves me.

Deep down, below the anorexic stuff bubbling up, the frustration at my lack of initiative at the moment, the dread of skiing next month, the exhaustion of bickering children needing my attention, down so low I can barely sense it, is fear.

Pure fear. Fear of the unknown. Fear of what ifs. Fear of jumping into something I've never done before knowing there's no turning back.

Last night my brother came over and we talked a bit about kidney stuff, as in what's my schedule like for surgery. Does February look good, is there anything on my agenda I need to take into consideration. It was like a conversation about meeting for dinner.

I'm open, I said.

So am I, answered my brother.

And then we moved on.

It helps me to be casual and light about it all. Because whenever it becomes more than that, I panic. I'm not a risk taker. Sky diving is not in my future. I trend conservative when it comes to anything physical. I'm terrified of illness, of my body revolting, of not being in control, or at least maintaining the illusion of control. I think, if I were to think about it, my father being an oncologist and having spent years hearing about illness and death has something to do with it. Both my brother and my sister bein so ill when they were so young. And then living, frozen, for years in a body I misguidedly thought I could master.


I go for my first physical this week. Should there be something, anything wrong with me, I'll know. And will have to deal. Should all be ok, more tests.

This feels remarkably like the creeping slowly uphill part of a rollercoaster. The anticipation of what I know will happen is terrifying. But I can't get off. I'm on the ride until it's over and I don't know if I'll be ok with it all or will insanely panic.

Not knowing is just about my hardest lesson to learn in this life. That, and letting go of
thinking I can control what I can't. And here I am, once again,  staring down the precipice of both.