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.

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. 

Uncomfortable. 

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. 

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.

Shit.

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.

life changing change

Yesterday morning, while having coffee with a friend, we spent a lot of time talking about potential change. Going back to a conventional job versus staying home with kids, what that juggle might be like, how we felt about where we are, where we could be, where we should be. And then, as we were walking home, we ran into another friend who looked stricken as we said hello. On the verge of tears. She'd found out the day before that her best friend had breast cancer.

Boom.

The trajectory of that woman's life changed in one sentence. Nothing would ever be the same. Out of nowhere she, her husband, her kids, her parents, her support system were plunged into the unexpected, the unknown, a dark, scary place where there were no guarantees everything would be ok in the end.

To be honest, no one can ever know all will work out but we live (or at least I do) in this place where we can pretend to have control. 

We don't. Not really. 

Not at all.

Another friend of mine lost his apartment this week. The recession hit him hard and he can't afford to keep his home. After years he's starting completely over. He'd tried, for too long, to maintain that everything was fine while his foundation was being worn out from under him. 

I too, am standing on a precipice. It's not coming out of nowhere—I'm choosing this road instead of it choosing me. No, actually, it's not that black and white. I'm not choosing this out of nowhere. I'm choosing it because I have no choice. There's no way I couldn't give my brother a kidney. Put more plainly, of course my kidney is his. 

Of course. 

But this road is fraught with unknowns. My first physical is next week. It could be that I'm a relatively healthy 46 year old. It also could be that there's all sorts of stuff going on in my body I don't know about. Yet. But soon I will. And after all that gets sorted out, once I have the green light to move forward, once we're tested and matched and tested again, once we're in the hospital and prepped for surgery, I still won't know. I won't know until I wake up whether I'll have one kidney or two. My brother's body is so compromised they won't know until they open him up whether he'll have room for a new organ.

All this could lead to nothing. Or a life, two lives, could be drastically, dramatically changed. 

Whew. 

Life smacks you in the head sometimes and leaves you reeling. But, still, it's better than the alternative.

reality settling in

I just woke up. At 10:40. For the second time today. The first go-round I walked the dog, got 2 kids out to school, threw in 4 loads of laundry. Answered email, waded through paperwork, hit the bagel store, then hit a wall.

I didn't sleep well last night.  Could be the stress of getting off a ship on Sunday, traveling home, and then plunging back into back to school and the rest of reality without a buffer. Could be the mellowness of steam rooms and massages and staring at the ocean wearing off.

Could be the voicemail I got from the transplant coordinator yesterday about next steps. I've had a week and a half or so to live with being a match—from a purely conceptual, not examining or looking too hard at the big picture, all is great. Exciting, enervating, gratifying. But I'm thinking her message popped the tiniest hole in my transplant bubble.

Next up is a comprehensive physical with my soon-to-be nephrologist. A quick aside: Last night, when updating everyone about the day, we had quite the enlightening discussion about necromancy and necrophilia, not that either are related to my kidney, but it was a good starting point for illuminating conversation.

By the end of today I should have my next appointment set up. Way up town. A full work up. More blood tests. A revisiting of every medical issue I've ever had. There haven't been many, thankfully. But I'm not a fan of going over things that went wrong.

There's a part of this that's revving my anxiety. My deep-seated, life-long, so strongly a part of me that it defines me fear that something terrible could be wrong with me. And then what?

Shit.

I'm trying so hard to take this in stride, to hold on to the positive, to keep my cup brimming.

But I'm scared too. Not even for the transplant part. For what they might find before.

There's a comfort in being oblivious. Less to worry about (although in my case I worry anyway).

Shit.

There's so much I could/should do to distract myself, to stay busy, to accomplish. It's a new year and usually I hit the ground running with goals.

Right now though I just want to curl back up under my blankets.

3 out of 6

I just found out today my brother and I are a 3 out of 6 match in terms of kidney compatibility. What does that mean exactly? Or even vaguely?

I have no idea. None at all.

Having said that, I was seriously disappointed at not having been a better match. I was hoping for at least 4 out 6.

Which apparently isn't possible. It's either 0,3, or 6.

Even so, I felt like I had failed somehow. Not done enough. Wasn't as good as I could have been.

It's not like this was a test I could study for. No cramming would have made any difference. My own expectations got in the way of what was realistic. Or even possible.

And that is something I have to let go of. This process is going to be long and mostly out of my control. Being a match at all is wonderful. Going forward it's got to be one step at a time and being able to accept what is, not what I want it to be.

giving

Last night I was at my brother's for Christmas Eve, a sibling family tradition that goes back for years and years. It was the first time we've seen each other since we got the good-to-go donation news and we celebrated in our usual laid back style: a high five. We're not demonstrative or overtly mushy—but it was a heartfelt hand slap. He then said, "Thanks. And I'm sorry."

He's been saying he's sorry since he first asked if I'd be tested. That's a family tradition too. I suppose its roots lie in jewish guilt but I'm sorry comes as easily out of our mouths as good morning. I apologize for not throwing a frisbee well, for my apartment being too messy (it's generally pretty neat), for not being as on top of things as I should.

As we sat in the transplant office, waiting and waiting and waiting during our initial visit, he apologized profusely. A lull in the conversation? I'm sorry filled the space. As we waited and waited and waited to have blood drawn (we ended up coming back the next day), he texted sorries too, even though we were sitting next to each other. I'm sorries for the delays, the far away doctor's office, the potential donation road I was contemplating, the traffic, the parking. Huge or tiny, he's sorry.

I asked him to please stop. I was there because I wanted to be.

And now I know, after getting the good match news, I'm here because I'm supposed to be.

I have been blessed in my life with amazing things. I am amazed, just about every day, at where I am. I have been married for 22 years to someone I'm still delighted to see every day. We both came from divorced homes and forged something as unbreakable as we possibly could. We brought kids into the world who are thoughtful, wise, challenging, delicious. We live in a lovely apartment in a fabulous neighborhood in NYC. I've worked on project after project that thrilled me. Wrote my dream book and put it out into the world. Had experiences I never would have, could have imagined. After so many years of being heart-breakingly lonely, of anorexia, crippling anxiety, insane self-doubt, I have extraordinary friends and an extended family I'm just getting to know and appreciate.

I am grateful for all that my life is.

And even more grateful that I can give something back.

In a bigger, more spiritual way (not that I often think that way so forgive me if I sound too hippy dippy), I feel like the universe brought me to this point. My time is relatively free, my schedule is open. My bike fall last fall taught me that I can go through pain and injury and heal to be just as strong as I was before.

From another point of view, what's the point of being here if you can't make an impact, a difference? We're on this planet for a very short time, and I'd rather mine be constructive than wasted. Having said that, I can spend more time browsing etsy and ebay than anyone should.

Jon, my husband, said years ago if you have a choice to do something or not to do it, always choose to do. That way you won't wonder or regret or live with what ifs. Way back when that was almost impossible for me to contemplate but it's become something that now comes far more naturally.

This is one to do that I wouldn't miss for the world.

No matter what happens, I'm thrilled to be on this journey. I know it will be hard, scary, anxiety-provoking, stressful, irritating. I know I'll be freaked out and second guessing. I know I'll be scared.

That's life. That's the journey. My journey.

No apologies necessary.