sick

At the moment we're all fighting something. Jack had a fever last night after a day with a sore throat. Iz's nose is super clogged. I've been having trouble sleeping as my head's been congested for a few days, my nose is just starting to run. None of this is major—sudafed, tea, hot baths and showers and we'll be fine.

My brother's fighting something too. Only for a him a fever means intravenous antibiotics administered when he's at dialysis, adding even more time to the time he spends there. 

I can't begin to imagine what he goes through. 

After FLOW, I started working on a book about aging: WRINKLE. But I couldn't go through with it because the reading and research freaked me out. Too much. The thought of my body giving out, falling apart, failing was terrifying. Yes, I know it's inevitable. Death is a part of life. I'm kind of more ok with that than the illness part. The not being able to rely on everything working properly part. The phone calls with bad news. The waiting for test results. The potential doctors visits and medications and hospitals. The dread of cancer. Stroke. Dementia. 

For as open and accepting as I like to think I've become, I freeze inside when confronted with illness. Panic takes over. Fear quietly glides into my heart and into my brain and I can't breath the same way anymore.

I can't live in fearless when it comes to the thought of illness. I live in fear. Rampant, overwhelming fear. 

I hold on so tight to everything being ok, at least the ok that I can live with. My ok means sinus issues I've learned to deal with, muscle aches and pains I ice and rest, menstrual migraines that split my head open for 2 days at a time. I can handle emergencies really well but the thought of longer term issues bring me to my edge. When Jack was little he had febrile seizures. They destroyed me. Every time he had a fever I'd lose myself in hysteria. I couldn't cope. I couldn't be calm. I couldn't find my center I was so afraid of what might happen. After 5 of them, 4 emergency room visits, an ICU stay, a neurologist, a cardiologist and endless testing, he was fine. It took me years to accept that. In fact, last night after I took his temperature, I realized that I finally don't freak out anymore, worried his eyes would roll back in his head as he lost consciousness. 

My brother doesn't have that ok. He deals, every single day of his life, with medical issues. He doesn't know anything else—he's been battling since he was a baby. I suppose this is his reality and perhaps he's got an ok status quo that works for him.

But, right now, he's not there. He needs a kidney. He needs to get rid of that chest catheter. He needs to get to a healthier place where his body can gain strength and heal a bit instead of fighting so hard against so many things. 

Damn. I with there was something I could do right now to make it happen. Today donating a kidney is just a concept. It needs to be a reality.

So, universe. Please get this riding moving again. It's time.

the gratitude challenge

No surgery today. I'm both disappointed and relieved. No matter how much I convince myself I'm ready for this, I never truly will be. And that's ok. If I can face this without a breakdown, I'll be proud of myself. Hey, even if I do lose it along the way (which will most likely happen), that'll be ok too. In spite of my fears, my anxiety, my innate need to doubt and second guess I'm in this until my kidney and I part ways.

And so, instead of being knocked out on an operating table right now, I've been thinking about how grateful I am to be in this place.

Overwhelmingly, exceedingly grateful.

Grateful for my body for being healthy enough to actually give up am organ. Grateful for my soul which continues to persevere in spite of myself. Grateful for my brother who blows me away by how he just keeps going in spite of all the extra challenges he has.

I'm grateful for my husband who never gets annoyed (well, almost never) when I wake up in the middle of the night asking if everything's ok. For my kids, who are strong and resilient, thoughtful and supportive - much of the time. Grateful that Jack wrote me a song called "3 Magic Kisses" and that Iz wrote a story about me that just was awarded best in Manhattan in a picture book making competition.

My mom and stepfather love me without reserve and are always there for me no matter what's going on. I have remarkable family, friends and a community of people who are caring and concerned. My puppies explode with love every time they see me.

I am grateful.

Today I'm also grateful for my red polka dot umbrella. For hot mochas on cold mornings. For being alone on Mondays. For my ease in being able to write on my iPhone.

For all the love that is in my life. And  how much I appreciate it all.

So, here's my challenge. Spend a few minutes or a few seconds thinking about what you're grateful for. I'm pretty sure you'll end up smiling. I did.

staring down a vaccuum

I am pissed. Angry. Frustrated. Roiled (I know that's not quite the way to use the word but I like the way it sounds). Stuck. Bored. Stumped. Lost.

Could be pms. Could be Sunday night blahs. Could be this low level cold that I can't seem to shake. Could be the mountainous pile of stuff on my desk that has proven impossible to reduce. Could be that it's been days since I've been to yoga. Could be all the things I have to do that I have yet to begin.

Could be because the transplant's been postponed and I'm staring at nothing.

I'm sure, beyond sure, surer than that shadow of a doubt  saying that if I was heading to surgery in the morning I'd be completely and certifiably unhinged. I can't begin to imagine what that will be like.

But, now I have more time to sit and wonder and wait.

I spend my life planning. Planning for me, the kids, Jon. The dogs. Extended family. School vacation trips. Camp options. Doctor appointments. Car inspections. What to do for birthdays. Book club dinners. PTA fundraisers.

I can't plan this. I have no say, no input, I'm not on any organizational committee.

I keep thinking that one of the lessons for me in this experience is learning to let go. To come to terms with what is and letting it be. When I'm a bigger person I can grasp onto that for a bit but it's so delicate it slips through my fingers and it's lost. From there I can plunge into, well, here. Bored. Gritting my teeth. On edge. Wanting something, anything but having no idea what it is.

Actually, I do know what I want. I want a guarantee that everything will be ok.

Sadly, that's not possible. And maybe that's the wall I'm battling against at the moment.

a postponement silver lining

According to my dream from December and tentative scheduling from the hospital, the transplant was supposed to be this coming Monday.

I've been coming to terms with the delay and not having any idea whatsoever when the new date is.

This morning, as I noticed my body feeling achy and tender, I realized this postponement has a silver lining that will save me untold angst.

A quick note for those who know me just from here—I co-wrote an exhaustive (as well as stunning and fun to read) book about menstruation that came out a little over a year ago. Should you not feel comfortable reading about periods, I suggest you stop here.

I won't get my period during surgery. I won't have it while lying in recovery, not able to get out of bed for hours. I won't have to worry about supplies, leaking, how to get to the bathroom when I'll be barely able to walk.

This was actually a real concern of mine. My period's been regular for years, showing up every 23 days or so. I'd prefer more in between time, but I'm grateful it's still here and is relatively reliable. For me, it's a sign my body's healthy and working the way it's supposed to. And so, based on years of experience, it was going to kick in a day or two after surgery. For the past few years (it coincides exactly with the writing of FLOW), it starts off with a day of cramps that often double me over and flow so intense it seems like something's tragically wrong. I couldn't imagine how I'd deal with post-surgery pain while uterine cramps ripped through the same general area.

So, should we be rescheduled on the soonish side, menstruation won't be part of the equation.

It left me thinking though, as I so often did when writing FLOW, what do women actually do? In all my research I never came across the issue. It's yet another menstrual-related topic that just doesn't get discussed often.

I just did a search. There wasn't very much out there. The most informative site mentioned that a nurse would change your pad during surgery should need be.

OMG.

I'll take that one step further. What if you can't wear underwear during surgery? One of my incisions is going to be right above my pubic bone. I doubt the surgeon will want to contend with a pair of boy shorts while slicing in. I'll leave the graphic imagery out here but I will say that while being put under, I would hate the what ifs swirling through my imagination.

And so, today I'm grateful for the delay, while hoping the next date occurs mid-cycle.

good health

As I'm in donation limbo there's not much kidney talk to talk about.

Which is leaving room to think about health, or lack of.

I've always lived in absolute fear of medical disaster. Could be because I've lived with serious illness down the hall my entire life and while it wasn't dinner conversation, it was always there. There was my brother and his cancer. My sister had a stroke. My father was/is an oncologist. What can go wrong wasn't an abstract, it was every day reality.

I can't begin to imagine how my parents dealt with two children who were so seriously ill. I suppose we all have the experiences in life that force us to let go, to somehow, however impossible, come to grips with situations we pray we never have to live through.

I excel at compartmentalizing. At packing up little boxes of situations and emotions, then shoving them way back in a closet I choose to not open unless I have to. I find that yoga is a necessity. To be present, to move, to breathe makes such a difference when shutting down, curling up and hiding were how I existed for so long.

To hold onto life as a far bigger picture than just me. I could spend every moment of this lifetime worrying about what ifs, re-experiencing what's happened. The little universe of which I am the sun, is pretty damn powerful.

But, there's so much more.

This kidney journey is allowing me a different perspective. To acknowledge that no matter how terrified I am that something's wrong with me, I know I'm ok. To be more grateful than I've ever been for my life, my family, all that we've built together. To accept, at least more than usual, that I don't control anything, no matter how much I want to. And in that, to live in what is, not what was or what might be.

did someone say transplant?

Now that there's not a set date in the offing—even if it's only a placeholder—all donation drive has disappeared.

It almost feels like it's not happening.

After that first crash and burn plunge into the depths, it's like the experience has been wiped away.

Not completely, there are traces as if on a used chalkboard where you can see faint outlines of what was written before, but the immediacy, the reality . . . gone.

I had thought in 5 days I'd be in surgery. I'd been building up to that, making plans, arrangements, mentally preparing, physically honing. I'd built the boundaries I'd needed to get me up to that point. I grappled and angsted (I know that's not a word but it's something I'm very good at regardless), I panicked and found strength. I reached out and reached in. I geared up and was as ready as I could have been to face this huge unknown.

But the rug was quietly slipped out from under me.

And if it wasn't for my brother keeping me up to date I never would have known.

I've learned, at least in my case, that no news is good news. I generally haven't heard back about test results and had to assume all was fine as I moved forward in this process. I was never told that I passed my psych evaluation, that my second 24 hour pee test was ok, that my final urine sample passed the exam. And no one, except my brother, told me the surgery wasn't happening on the 21st.

The communication flow has been challenging elsewhere. The surgeon didn't know I'd already had my cat scan done. The nephrologist hadn't heard I'd been cleared to move forward. No one told the hospital billing department I was a donor and they shouldn't be sending thousands of dollars worth of bills to me.

Honestly, it's all been part of the journey and I've dealt with it without much frustration. I'm learning to let go in ways I'd never imagined. Recently in class, a yoga teacher shared his experience with "hospital time" which is far different than the every day time we live in. I'm broadening that to "medical communication," in which patients aren't always part of the loop when they should be front and center.

Right now, though, I'm frustrated. Not at all of the above per se, but at having been stopped dead in my tracks with no idea when the ride's going to start up again.

I wish someone, anyone, could give me an answer. Or at least some encouragement and support.

now what

I was holding onto 3/21 as a transplant day for almost as long as I dreamed the date.

I needed something concrete to hold onto even if it came from a figment of my imagination. I needed a time, a day. A plan. Those of you who know me in the real world how how important plans are to me. 

And now, there's not one. 

I'm not dealing very well.

I have so much I should be doing right now but all I can do is sleep. All I want to do is crawl in a hole and disappear. My energy's gone, my drive, my focus, my enthusiasm, my creativity. Honestly, I don't even care. I could be lost here forever.

It's not depression. I know depression. That deep black tunnel was home for many years.

This is more apathy. Feeling lost. Maybe it's the death of my friend settling in. Maybe it's not wanting to deal with tutors and test prep and summer plans and camps and taxes and puppy training. 

Maybe it's because this donation has been what I've been doing for months and I'm a bit lost without it. And maybe it's because I'm petrified about what I'll find on the other side. Not the health stuff. I will recover. It's everything else. This is reminding me of coming to the end of a project, heading towards a pub date and instead of being thrilled and excited, feeling let down and lost. Wondering if I'll ever do anything again. Stewing in an emptiness of doubt and loss. 

I felt most like this with FLOW—knowing I was putting all my time and energy into something that might matter, that could make a positive difference in the world. But not knowing whether it would. 

This donation is that but even bigger. 

It could change someone's life.

Or it might not work. 

Hey, my kidney might not even fit.

And then what? Where will I be? What will I do? 

Once this is over I'll be at that starting point I always seem to come back to. That I wish to god I didn't have to. I'll have to figure out a new path, a new project, a new purpose. 

Everything up in the air is only making the angst worse. 

I don't know how I'll cope with 2 more weeks of waiting.