Here's how it happens

I go to visit my grandmother after she gets out of rehab, following a nasty tumble down the stairs. I've talked to her, as usual, on our Friday night phone calls, but ... something seems off. She drifts, seems to forget she's talking to me, seems ready to hang up as soon as she answers the phone. I'm worried, but my uncle has assured me that it's just a medicine mix-up, and that it's all under control.

Shortly into our visit, I realize that nothing is under control. My uncle is somehow missing the fact that my grandmother is not acting lucidly, that she's easily confused, that her pain is not being managed well. As we talk, he seems to realize that things are worse than he recognized, and I can see that neither of them are sure what the hell comes next.

I have no idea what comes next, except now I am volunteering to stay on the couch, and help with meds and her PT almost before I knew I was thinking it. I was meant to stay for a few days, but - on the first free day that I went home, to shower and refill my pills and gather some supplies and whatnot - I don't make it as far as my house before I am filled with an overwhelming fear, only manage to make it to my room and close the door behind me before I am sobbing uncontrollably.  The only thing I am sure of is that I need to be there, because they need me, even though I will be able to solve nothing, even though there is no possibility of fixing this.

And that was the last night I spent anywhere but my Grandmother's couch until three weeks after she passed away.

----

This time, my mother and I have planned to come down to my brother and sister-in-law's house every Thursday, and at least one other day during the week, to clean the house and distract & feed the children, and just... be supportive. The cancer is stage 4: we are hoping for miracles, but know how unlikely they are. We do not care. She does not care, and so treatment continues.

We are there two consecutive Thursdays, straightening things up and moving all their shit into neater piles, and helping the (not so) littles with their homework - basically doing the busywork of life that falls to the side when you're too sick to do anything but sleep and take your meds.

 My brother slowly seems to understand that we are here to help and not to just mess with his shit, and starts confiding how scared he is, how desperately hard this is becoming, how he doesn't know if he's going to be able to do it. On Facebook, he cracks a 'joke' about Stage 4 Cancer and spousal weight loss, and I can see how tightly he is holding on to his edges, how close he is to his private apocalypse, and I ask how I can help.

He tells me he trusts me more than anyone else, and he needs someone he can trust. He needs someone. I know how to be someone, and I push aside the thoughts of how often I need a someone and can find no one, push aside all of the non-essential elements of my own brand of being sick, and transition into helper-mode. I make schedules and organize paperwork and calendars. I make sure someone else will always be here, even if that someone else usually winds up being me.

Not being able to drive, and Mom having a job now, and scarce/uneven coverage during the day, mean that it's much easier to just camp out in their comfy chair, to claim a corner of the living room as my own. Sleepover almost never-ending, for now. For today.

And here there is hope, and here there are treatments, and here there is still that irreversible diagnosis waiting for us at some end, but it isn't now.

 For now, I try to coax my sister-in-law to eat more than three bites of noodles, of pizza, of absolutely anything, and lament that radiation makes everything taste like chalk. For now I keep med schedules and daily logs and ask otherwise inappropriate questions about bathroom habits, and hope that, somehow, she will forgive me. For doing her kids' homework with them and making decisions about whether they can go over their friend's houses; for camping out on her couch when she probably just wants to be alone; for following her into another room when she can't really tell that her feet are tangled in the oxygen cord.

For all the little things that piss me off the most when I'm sick, and I try so hard to avoid, but somehow, occasionally, still slip out. For poaching and nagging and making a sad face when I think she's not looking.

That's how it happens - how, piece by piece, I become a fixture in someone else's story, someone else's home, someone else's days. How I turn off my own life - just for this little while - in the hopes of helping. Just Helping. Sweet jesus, just Let Me Help. 

In case you were wondering. -

And a lot of people seem to be, and aren't exactly nice when they inquire - "How can you take care of someone else, when you can barely take care of yourself?" they ask. You're right - taking care of me is a struggle. Every. Single. Day. But a lot of that struggle is sitting around, laying around, distracting myself from the pain. Turns out; it's not that much harder to do in somebody else's living room, watching over them while they rest. Waking them up every few hours to try and get them to eat. Reminding them to take their pills when your alarm goes off for you to take your own.

Not saying it isn't hard. Because it's draining as hell and I couldn't be sorer outside of a 5-alarm-flare, but ... it's worth it. To be able to make her smile when I poke fun at my brother. To make my brother be able to go to work without having a panic attack. To hug some kiddos and let them pretend during a game of War. To talk to her sister and let her know that she matters to us too, that Sister-in-law is a part of our family, and that means that her sister can cry on my shoulder any day. To learn more about her, filing away bits and pieces for tomorrows.

If it's something that winds up being too physically taxing - and it already is, it always is - then that's a thing I'll deal with. Because there are a lot of parts of my life I have had to shut down, turn away from, pretend don't matter, and this is one area I'm just not willing to do that with. 

But in case you were wondering, that's how it happens.
 

This year's word*

*This year will be brought to you by the word "Share"  - alternate, very Sesame Street-styled post title.

As always, I gave a lot of thought to what I want this year to be and provide, the benefits I'm hoping for, and the weaknesses I'd like to overcome.  I actually came up with this while writing my last post of last year, as I was going through my list of moments that mattered most to me, and trying to come up with ways to create that feeling as much as possible this year.

What it came down to, really, was that a lot of those moments were spent with the people I care about, or were about me being open to new things/people, or about embracing parts of myself that I have (in the past) tried to ignore or downplay. So this year's theme word is going to be sharing.

Sharing the parts of me I generally keep well hidden - including being more honest.  Both in general - I'm not some huge liar or anything, but I tend to keep things fuzzy and broad when I'm talking about myself - and, more specifically, about my health. Which, for me, will mean answering more truthfully when people that care ask me how I am doing. My stock answer "I'm doing" is both a family joke and technically true, but if I get the sense that the person who asks actually cares and actively wants to know, I'm going to attempt to be more open about how I'm actually feeling.  There are two keys here - 1) Only giving real information people I know aren't just asking as filler or who want the broad strokes answer and 2) Finding some sort of middle ground between smoothing things over and trying to accurately explain to people who love me how much I am truly suffering. After more than one missed opportunity last year, and a few run ins with family members saying things like "I don't even know what you're diagnosed with" or "Is that new?" about a serious heart problem I've had since I was a teenager, I feel like I'm doing myself a real disservice with the standard glib answer. So, where and when it is possible, I'm going to share this piece of myself a little bit more clearly.

Sharing means being open to new experiences and people and plans - both offline and on. I'm hoping to attend my first Con this summer (Boston Comic-Con 2014); I want to make plans with each of my siblings and nephews and niece for stuff we've never done before or stuff we haven't done in a really long time (and maybe get a portrait done for my mother, who's been asking forever); I'm going to be moving somewhere, somehow this year, and I've got to just embrace not knowing, and then wherever we wind up going; I've got to finally nail down a new treatment plan with Zach, even though I've been balking for a while (because all of the options are scary); I want to put myself in new positions & embrace being curious.

Sharing means taking more opportunities to create things, taking the things I create more seriously, and overcoming some of my fears about letting other people see/experience/know about those things. (It does not mean I'm telling my family about my blog, because Hell No.) But it might mean joining new forums, meeting up with like-minded creative people more often in real life, self-promoting a bit, or finally finishing some of the seventeen projects I've got in some form of unfinished.  It definitely means taking more pictures, writing more words, reading more books, playing more games, loving more people, embracing my inner geekess and librarian and letter-writer. 

Sharing means feeling feelings and not hiding them. Quitting the passive-aggressive bullshit and standing up for myself and others in more clear terms. More social activism - both online and in real life, if possible - and incorporating it into my own life better. Making sure my values are the things I'm living by, not just the things I'm hoping to live by.

Sharing is going to mean letting other people share more, being more open to other people's feelings and perspectives and lives with less judgment on my part. This is already something I've been working on, but I need to keep at it... I want to be the person people come to, and for some people, I am. I am very proud of that, and I value those relationships.  I also know I can't be that person for everybody in my life, but there are still some steps I can take to foster better relationships, and those I can take. This is going to be a rough year for my family, and some of them don't even realize it yet. I want to be as available as I can be - without getting taken advantage of (!!!) - because you're there for the people who matter to you, as much as you can be.

Sharing means more friend time, more chances for new friends, more linking and liking. It means embracing sadness but not the isolation it thrives in; having a good day and then telling people about the flare it caused and how that puts a damper on the happy; it means spreading my self-care strategies around so they can benefit other people.

Sharing is less hiding and more showing up; less worrying by myself and more accepting helping hands; paying compliments when I think them instead of hoarding them for later; keeping dollar bills and packs of gum in the car for people who beg on street corners; letting things I don't need anymore go out into the world where they can be of use to someone else.

Sharing is ...

It's just showing up more. And opening up more. And hoping that the world - or at least my little corner of it - follows suit.


And it's wishing all of you the happiest 2014 that there can be. Whatever comes, know if you want to talk about it, I'm here to listen. And know that you all play a large part in saving my sanity, if not my life, because I know you're out there listening too.

Ok 2014: Be nice to us.

It's that time of year again...

When everybody and their brother is doing 'end of the year'/'best of the year/'year in review' posts.

And who am I to buck tradition?

2013 was not nearly the shit show that 2012 was (although it certainly was the year a lot more curse words showed up regularly in my vocabulary), but it was the year when the hell of 2012 caught up with me.  (And a lot of other people, I think.)

So I spent the majority of the year swamped with a grief that was terrifying and incommunicable for me - I was constantly feeling that it shouldn't be this bad, or still this bad - and couldn't seem to explain to people just how bad it was, so I shut up about it. As is evidenced by the severe lack of pre-November posts on this blog: the smallest number since it's inception 8 years ago. It seems it's easier for me to write through illness and pain, and people dying and caring for the dying, and betrayal and hurt, than the feelings that all of those things leave in their wake.

Shocker.

I still can't explain how the first half of the year passed by so quickly, and how the second half of the year felt like I was waking up from a coma. Somewhere around my birthday, though, there was a shift, and I started to think "Ok, if I don't snap out of this soon, it's going to get really bad." So I made myself do some things that were good for me  - and I really mean made myself: getting out of the house seemed even more Herculean than ever, but I sometimes managed it.  And, slowly but surely, somethings started looking up.

For example, 2013 was the year I became a fledgling Whovian & Nerdfighter; It was the year I finally did some of the things I said I wanted to be doing - going book signings (some more successful than others); outings with grown-ups!; Investing a large sum of money (for me) in a camera that does (mostly) what I tell it to do!; Joining tumblr (and letting the reblogs begin!) & finding spoonies to connect with, locally and all over the world.

It was the year I stopped giving (so much of) a damn about what other people's expectations of me might be, and just embraced my inner geekiness to a level that still does not plumb the depths of my inner nerd-capabilities. (I dressed up on Halloween for trick-or-treaters! I bought a skirt with comic book print all over it to wear to Boston Comic-Con next year. I claimed my Hufflepuff-ness! I did Disney crafts and showed them to people! I made my niece and nephew watch The Hobbit (which they liked)!) I'm going to keep on going, and one of these days my family will be embarrassed to be seen with me because I am geeking out over something that I am probably too old to be geeking out over, and I will be proud of that.

2013 was the year I called the cops on my dad, after months of suffering his abuse (or letting my mom suffer his abuse) in silence: I did it because it was the right thing to do, and I don't care if a large portion of my family disagrees with me or thinks I should have handled it differently or is telling me I'm being to harsh with him now (by basically ignoring him) - I know I did the right thing then, and that ignoring him now is saving me from being hurt even further. So I'm going to keep doing what I have to do, and everybody else can just deal with how uncomfortable it makes them. There's a whole lot of discomfort coming up, if I'm any judge: I think my mom is truly done and that there's going to be a separation and house selling and change of circumstances for everybody very shortly. It's going to hurt all around, and everybody is going to have their own emotions to deal with, and I'm just going to do my best to be there for people without letting them trample my own feelings in the process. (Therein lies the trickery.)

2013 was also the year that I saw a baby born. Which was powerful in a way I thought people were exaggerating - having never given birth myself, or been present in the room at anyone's birth besides my own.  The idea that I spent time this year watching a new person show up on earth, to in fact be the first person to see him show up on earth is still unbelievable to me.  I almost can't explain how touching it was - and how much that whole experience, rife with my sister being a warrior princess who almost died and my other sister showing up in ways that ultimately cost her and just sitting in that room, in the dark, in the (pardon the pun) pregnant silence beforehand, while my sister gathered her resources and praised the Gods of Epidurals: Every painful moment and hard-earned bruise, every countdown from ten and impatient toe tapping; every bathroom light flickering off at opportune moments, and the instantaneous relief when the baby cried, when the nurse came back from surgery to tell us my sister was fine - I will relish Every. Single. Second. of that experience. Forever.

2013's theme word/phrase was "perhaps", and a lot of those perhaps-es were not what I expected.  A bunch of them came out of nowhere and mowed me down, left me to pick myself back up. A few of them were sparkling solitary moments of crystal clear perfection in an otherwise tornado of a life.

Those moments are what I'm trying to hold on to right now, as we all end out the year - Seeing the baby's head after a very long day; seeing my sister and her husband, fast asleep, while I held their little one and told him how much he was loved; watching NephTwo laugh in the line as we waited for Santa (on what he swears will be his last year); reading a blog post and laughing so hard I thought I'd choke; snuggling with Lil Girl right before she fell asleep and turned into a sleep ninja; the look of pure dread on Oldest Nephew's face when the waiters started singing 'happy birthday'; holding my mother's trembling hand as I played her patient during her CNA exam; SisterK's pixie cut and how it made her look like a grown-up, all of the sudden; SisterJ's laughter returning after a frighteningly long absence; the text from my brother telling me he'd gotten married; writing a book and learning way too much about the Spanish Flu; watching a friend get married - so far away! - over the internet, and marveling at the world we live in now; playing Apples to Apples with teenagers who didn't know what the Cold War or who Eddie Murphy was; chocolate fondue for my birthday - So many tiny, excellent moments in this whirlwind of a year that started out so bleak, and could have ended the same way.

I'm in for some changes, the New Year is sure to bring them, and 2014 is coming whether we're ready or not. So, just a quick 'thank you' to all of you who've helped make my 2013 so special - Spoonies, Twitter Friends, Tumblrarians, Nerdfighters, People I Blog Stalk, and my (wonderful, fantastic, couldn't have done it without you) everyday readers. Thank you, for sticking with me, for helping me see some things I wanted to avoid, and for sticking around through the gloomy times. 

Here's hoping 2014 is packing a whole lot of happiness in whatever punch it's preparing for us all!

On being an auntie (again)

Dear DD ~

 Tomorrow you will be two weeks old. I hope these first two weeks of getting to know your mom and dad, your two big brothers, and as much of our crazy family as possible have been wonderful for you.  I'm sure you're pretty overwhelmed with this whole "being alive" thing: let me give you a clue - the rest of us are too: It never gets old.  Just enjoy the ride as much as you can.

You were the first baby I've ever seen being born, and ~ let me tell you ~ it is not something I'm ever going to forget.  I know you won't remember it, but for the rest of us there (and all of the aunties and uncles and cousins and brothers and grandmas and friends who weren't lucky enough to be in the room at that moment, but who were thinking of you and your mama with all of their might) it was a miracle, a treat, an honor.

If I were going to tell you your story, I could start waaaaay back at the beginning and tell you how hard your Mama and Daddy tried to make you into a reality: how they took all different sort of tests and medicines and shots and procedures to make sure that someday, there would be a little you.  But that's not the fun stuff, not really.  The fun stuff started two weeks after all of that when Mama found out you were coming.  Soon, you had all sorts of nicknames: Baby Cold, Little Nugget, Lil Man, but the one Mama & Dad used the most was Baby Dash.

We had to keep it a secret for a while, because being a baby is a dangerous proposition, but thankfully, you were up for the challenge, and soon everybody knew that there was a little guy - a little you! - in your mom's tummy. Well, almost everybody.  There was that little mix-up at your cousin's birthday party in May, when Auntie N's sister said "So I hear it's a boy!" in front of your brothers, who didn't know yet.  Poor Mom was so upset she hid in the bathroom for a while, only coming out after mean Auntie J refused to bring her food in for her. ;)

But you kept on growing big and strong in Mom's tummy, and soon there wouldn't be any hiding you; not that she wanted to.  Mama always looked lovely pregnant, even when her poor piggys got all swollen and she felt like she had "a face full of chins" - I think she was gorgeous the entire time, and she was lucky enough that (up until the last month or so) you didn't really cause too many problems.  But then there was heartburn and not sleeping and all sorts of discomfort, and by the time September rolled around, Mama seemed pretty ready for you to be born.  Of course, like a true NTE's Larger family baby, you had your own ideas about that, and kept everybody waiting until the very last week!

Even when your labor started, you took your sweet time in coming out, playing peek-a-boo with the midwives for the course of an entire day, till your poor mom was so sore and so tired and so... DONE that I'm surprised she didn't leave Daddy for the anesthesiologist when he came to give her her epidural.

Of course, that was almost 20 hours after her water broke, and 10 hours since she'd been in active labor, and 5 hours since she was at 9 centimeters only to go back to 8 when you decided you weren't quite sure that you wanted to make your entrance that day. 

Your mama is a warrior, kid: and don't you ever forget it.  I know she'll doubt it more than once in the next couple of months (years, eternities), but she wasn't the one watching the battle, she was too busy fighting it. As an observer, let me tell you that she fought FIERCE.  I wanted to sing her every song about heroes I'd ever heard:  to have Beyonce echoing "Who Run The World" down the empty corridors, "Eye of the Tiger" blasting out over and over again to help her stay pumped up.  Not that she needed it, but because she deserved it.  

In a surprising turn of events, your mama, who swears more on any given day then just about anybody I know (except for Auntie J, of course) ~ said only one word, over and over that day: Ow.  A multiverse of curse words at her disposal (and I thought up some really good ones later on, but that's skipping ahead), and all your Mama said was OW.  But it wasn't a nothing word, that ow.  It wasn't a throwaway or a waste - she meant it: Every. Single. OW. 

Each was a powerful OW, for sure.

 And behind them, I could hear how scared she was - for you, for her, for how long it was taking and how hard it was turning out to be, and the needles and the epidural (which she did not want at all, originally) - and, eventually, I could hear how exhausted she was, and how low her reserves were getting, but through it all, her OW was a freaking powerhouse of a word: A magic spell that she was weaving around the both of you, calling you, trying to get you to come out, to be here, to be safe at last. To be hers. 

I get chills just thinking of it.  How all day she moaned and whispered and prayed for you to just come out and be hers. 

Of course, there was also no small amount of whining that you weren't out already or ordering people around (Daddy especially got in trouble for things like moving his hands, going to the bathroom, or attempting to stretch), but who could blame her? She was doing all the heavy lifting, and the rest of us were just the back up.

And the back up team worked some magic in that room as well, I'll have you know: Grammy soothed with her tales of experience, her "no press here"s and  her trademarked 'brushing the hair of your forehead' move, which your mom usually doesn't allow, but couldn't get enough of that day;
Auntie J became some sort of squatting sumo-dancer, holding Mama's weight while they swayed together, trying to outlast the latest contractions, and told funny stories about how Papa used to bring them presents from the gift shop (which was really the lost and found) at work;
Daddy was a back-rubber extraordinaire, climbing into the bed behind Mama at one point and finding the exact right position (from which he could not deviate, not even for a second) to help the back labor pains feel just a little less devestating;
I did important things like guilt-eating donuts, trying to help Mama understand that taking the epidural was not a sign of failure, but a sign of progress that would help get you here safe and sound, and counting to ten really loudly and slowly.  (Also, like a dope, picking up Mama's leg at one point because she couldn't do it herself and the intern who was doing it left the room.  And that is why Auntie NTE's arm is still not working correctly today.  But it was worth it. :) )
Even Uncle Kand Papa managed to stop by after work (and, handily, after the epidural) to pass out cigars and tell you to hurry on up, respectively. And all across the Clan, phones beeped and Facebook lit up with all sorts of "C'mon kid!" and "You can do it Ch & DD!" messages.  We even had some 'haunting' visits, as the bathroom light kept shutting itself off, and we all decided that Nana, a constant "When you leave the room, shut of the light!" fanatic, wanted to let us know she was rooting for you guys too. 

We loved you already, you lucky devil, you.

But your Mama worked hardest of all, and longest of all, and eventually, after a day and some hours worth of labor, you were finally ready to make your final approach.  Hours of "Ow" and magic spells came down to a few more hours of pushing and counting and breathing and more magic spells and holding our breath and a couple more rounds of peek-a-boo with the midwife.

But eventually, there was your tiny head!- not feeling so tiny to your Mom at the moment - and all that hair! (You're our first really hairy baby, you know... most of your cousins were capital B Bald, but you're covered all over with dark downy hair.) You sort of had that cone-head thing going for you, at first, but then there was your squishy little face, your shoulders, and all the rest, and there you were!

Baby DD, all born and pink, and adorable. 3:34 am, Sept 27th.

By the time the midwife passed you to your nurse, your cone head had somehow rearranged itself into a perfectly small, round noggin, and you started crying before they even started rubbing you down. 

All fingers and toes, and fuzzy arms and legs, and heart shaped ears, and long-tree-frog toes, and button nose accounted for!
Your dad picked you up and you met your mom for the first time, and there were tears and smiles and congratulations all around!  (Grammy and I may have sniffled a little in the background, but you'll never be able to prove it. )

-------
And this is the part I will never tell you, DD ~ about how badly your Mama scared us after you were born.  How there was so much blood, that I knew, even though I'd never been in a delivery room before, that something bad was happening.  How it just kept coming, and with it came a swarm of new doctors and nurses and medicines, and machines, and how they all had that air of 'not panic' I know so well from hospitals and hospice workers.  'Not panic' must be a thing they practice, with the intended goal being that they keep their cool in emergency situations, but it has the adverse effect on any layman who's ever dealt with it before.  When they started buzzing, my heart  - so close to the surface now, thanks to your safe arrival - literally froze.  I watched the monitors as Mama's blood pressure zoomed down to meet one of mine, and searched the stone faces of the newly arrived doctors as the blood just kept pouring out.

And that's the only way I can describe it: literally pouring out. And when the meds they gave her didn't work, within five minutes, she was bundled up and was on her way down to the operating room, accompanied by the flurry of doctors and nurses and midwives, while Daddy, Grammy, your nurse and I were left in a now silent room.  It's the eeriest worst non-sound ever, honey bunch, and I am praying to a God I don't believe in that you will never have to hear it in your lifetime, even though I know it's a wasted prayer.  I was holding you as they took your mom away, and she was looking for you and I said "He's right here; he's fine. He's ok." Holding back tears, because now her face, instead of the warrior face I'd been seeing all day, was the scared face of my baby sister who used to curl up in my lap when strangers came into the room - and I told her "You're going to be just fine." in my most "I'm the boss here, I know what I'm talking about" voice as they rolled her out of the room. 

The times I use that voice the most? Are the times I feel it the least.

And then the nurse said this wasn't uncommon, and she was sure everything would be fine and that she had to take you to the nursery, and I passed you on to Daddy and took a couple of pictures and tried to stay calm and not think about how the pictures I had could be the only pictures I ever got of you with your Mom.  And I tried to use my fake "I know what I'm talking about" voice with Grammy, who never really buys it, but at least it stopped her from bursting into tears at that second, which is what we both felt like doing.  And then she went for a cigarette (which is her "I know what I'm doing" coping mechanism) and Daddy and the nurse took you to the nursery and I was left alone to pace a room with my baby sister's blood on the floor. (And her/your placenta sitting on a tray table looking gross ~ which, let me tell you, if things had gone differently, your mom wanted to EAT that.  Well, take it in pills, anyways.  And I literally thought about how it looked like liver and how I might possibly throw up on that same exact floor.)

And then I called Auntie J and tried to tell her that you were here! and the scary stuff about your mom! without freaking out too much! Which I guess I didn't pull off, because she later told Grammy I sounded like I was freaking out.  But whatever. And then I eavesdropped on the nurses at the nurses station, listening for any news from the OR and Grammy came back, and the intern came back to tell us that your mom had stopped bleeding almost as soon as she'd gotten into the OR and all was well, no tears or anything, just contractions that forgot to stop after you were born, pushing out the only thing that was left in there, Mama's blood.  And although she needed a transfusion later that day, she is fit as a fiddle now, and that's the happiest ending in happy ending land, for sure.
-----

But I won't tell you that part.  I'll stop the story a few hours later, when your mom and dad are both sleeping in their beds and you are sleeping in your little rolling see-through bassinet and I'm watching the sun come up over Cambridge & Somerville, an area where our people (at least your Mama's people), have lived on/off for at least 100 years, thinking about how now we have a new people.

 I'll finish it with me seeing my baby sister and her husband, and her brand new baby, all dreaming the dreams of the innocent, or the warriors, or the rewarded.

 Whatever you guys were dreaming about that day, it couldn't have been anything better than what was actually happening, what was brand new, and vividly real & miraculous in that hospital room that September morning.  A new family, starting their first day together.

Welcome to the world, Baby D.  Thanks for getting here safely, for helping your Mama realize she's a warrior, and for looking at me with those big dark eyes.  I'd say "I couldn't love you any more than I do right now", but all of your cousins have dis-proven that theory already, as I love them more and more every day, year, eternity.  So you better get used to your Auntie NTE, pal, because I'm sticking around.  Now, convince Mama & Daddy that 40 minutes is too far away, ok?


 

guess what?

I stopped writing again.  And taking pictures.  And talking to people outside of my house.  And doing anything just for fun.  Not all the way - there was some writing, and some fun, and some pictures, but for the most part?  I just stopped.

Which, if you've been here any length of time, you might recognize as a sign of Very Bad Things. 

And there were some Very Bad Things -

 -  My grandmother has been getting worse, then better, then worse, then better again for months now, and a very large part of me wants to shut down what I'm doing here at home (which isn't much, to be honest) and move in over there again.  If I thought I would be a real help, I would do it in a second.  But right now, it's all just question marks, and 'why is she getting worse?' and 'but now she's better so let's forget about figuring out why she was worse: send her home', and so much nonsense. 

-  I saw a "pain specialist" at the pain clinic that Zack sent me to and he came in the room, looked at me and my chart and said "I have nothing good to tell you and you will leave here disappointed."  Disappointed didn't really cover it, though, because, against all of my self protective instincts, I actually go into these things hoping that they'll be able to help (god forbid!), and I left the appointment wanting to set things on fire - my mother said she couldn't think of a good place for a fire, however, which was also disappointing.  He told me nothing new, gave me the 'stay the course' speech, and still, by the end, when the nurse came in to give me the 'you can go now' part of the speech, and she was very sweet and conciliatory, I wanted to burst into tears - she knew that he wasn't going to be able to help me, I knew it, Zack knew it.  Doesn't matter, for some reason.  Still felt like getting kicked in the face, one more time. 

- Things around the house have been... I guess awkward is the best descriptor I can think of.  The not drinking is going really well (at least in the house: there is an increase in dinners out of the house, just my parents, and I don't believe those are totally sober, but you have to go with what people tell you until they prove otherwise), but it's still awkward.  There are things you can't say, places you can't go.  And there's still the belief that an apology is enough, which I am not finding to be true.  He has said he's sorry, but ... i don't know how to get across to him that he has things in our relationship that need to be repaired, that require effort on his part.  He thinks the not drinking should be effort enough, and I am conflicted about whether it is or not.  (It feels like it should be, and also that it shouldn't be: that makes no sense at all to anyone but me, I am sure.)

- There's a distinct lack of children.  What with all of the kids being in school (or two hours away), there are only weekends and vacations during which I can be around the little people I love.  (Also: note to self: there's really only one 'little' person left, and he's two hours away.  The kids I see regularly are going to be 6 and 12 (!) in less than a month.)  I love that their growing older - the depth of stuff we can do: book signings and museum trips and dollar store challenges - is ever expanding, but I'm also kind of sad that there's no little bits to tuck in for nap time or sing silly songs with.  Only Lil Girl came to decorate eggs this week - her big brother was busy playing hockey.  It was the first time he was 'too big' for something like that, and there was a definite twinge in my heart area: I do not know what I will do when it's time to visit Santa and he rolls his eyes and says 'no thanks.'   

-  There's also a distinct lack of my children, and the reality of that perhaps being a permanent situation is starting to feel overwhelming.  I know it is not impossible, and I know there's still some time left for that to happen for me, but ... it's not on the horizon, if that makes sense.  I can barely function most of the time, healthwise, and I can't see adding the complications of children into the mix.  At least not now, and not now, I'm starting to realize, has been going on for at least ten years.  It's starting to get to the point of 'if not now, when?'   That's a really hard question to answer, for a girl who's always wanted to be a mom, but can't see how that would happen.

-  Then there's assorted what the fuck-ery: my SSI getting screwed up (for the second time since December), and having to deal with all the phone calls that entails; this whole diabetes, math at meals thing, which is like torture because there are so! many! numbers! and I hate numbers; all of the stuff that I'm supposed to be doing in the house that isn't getting done; random infections; other family members' health issues; and on and on and on.

So there's been some stuff, is what I'm saying.  But not writing about the stuff gets me into trouble, so I'm re-committing (for the Xth time) to writing here more often.  At least once a week, hopefully more.  About stuff that matters, not just random gobbledegook.  So I shall see you all back here, very soon.  Till then, be As Well As Possible.

"Parenthood is pain and sacrifice and...

the extinction of free time and the postponing of dreams and the scrabbling in the folds of the couch for spare change and sanity, peppered with flashes of pure joy."*

Day 05 : Something you hope to do in your life

This one is easy. Besides "get better" (however better might be defined, but preferably the words "miraculously" and "completely" should be involved), my major hope has always been to be a mom.

Seems like it shouldn't be the most outrageous hope in the world, but it is the one I'm most afraid might never come true. It's even less frightening to think I might never get better, because, at the very least, I've figured out how to get by being sick. I've never really figured out how to get over not yet being a mother.

I don't talk about it a lot here, because it's so hard to talk about, and because it's one of those topics I'm not capable of expounding on with any sense of clarity at all. It's all emotion, and it sits, like a huge lump in my throat. I'm afraid to utter even a peep about it, lest the entire lot come tumbling out in a torrent of tears and ramblings and little hiccups.

So I'll just say that that is something I hope to do in my life, and, should that hope prove impossible, I don't really know how I'll cope. (I will cope; I am just not really sure how I'll manage it.)

So negative: gah! Was I supposed to say "mountain climbing" or something? Because mountain climbing sounds like torture, and I don't know why anybody would want to do that.

Unless it's your hope, and then: more power to you!

*Kate, Sweet/Salty 9-10

Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.
Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.
Day 11 Something people seem to compliment you the most on.
Day 12 Something you never get compliments on.
Day 13 A band or artist that has gotten you through some tough ass days. (write a letter.)
Day 14 A hero that has let you down. (letter)
Day 15 Something or someone you couldn’t live without, because you’ve tried living without it.
Day 16 Someone or something you definitely could live without.
Day 17 A book you’ve read that changed your views on something.
Day 18 Your views on gay marriage.
Day 19 What do you think of religion? Or what do you think of politics?
Day 20 Your views on drugs and alcohol.
Day 21 (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?
Day 22 Something you wish you hadn’t done in your life.
Day 23 Something you wish you had done in your life.
Day 24 Make a playlist to someone, and explain why you chose all the songs. (Just post the titles and artists and letter)
Day 25 The reason you believe you’re still alive today.
Day 26 Have you ever thought about giving up on life? If so, when and why?
Day 27 What’s the best thing going for you right now?
Day 28 What if you were pregnant or got someone pregnant, what would you do?
Day 29 Something you hope to change about yourself. And why.
Day 30 A letter to yourself, tell yourself EVERYTHING you love about yourself

A learning experience is one of those things that says, “You know that thing you just did? Don’t do that"*

I can't believe I've left this post up for this long, since, in my head, I've written about thirty six posts since last week. Unfortunately for my blog (or perhaps fortunately, since my brain isn't exactly in tip top condition lately), my computer doesn't travel as well as I would like it to, and there's no internet connection at the rehab. I don't know what their problem is, since, if I were using their facilities, I would definitely need the distraction.

Anyways, my grandmother is doing very well, thank you: She's got a discharge date set for this Thursday, and her improvements have been quite great and quite quick. She still needs to use the walker, which is absolutely going to be a point of contention once she's home and isn't on her best "let me out of here/ see what a good patient I am!" behavior, but we'll deal with that when we get to it. In the meantime, she's doing really well. (Thankfully.)

There's been a lot of other family drama - some of which I can't talk about here and some of which I just don't have the energy to go into right now - but I have been trying to keep what energy I do have focused on caring for my grandmother and putting it where it can do the most good.

As for me, I'm ... I don't even know how I am. Up in the air, like one of those little juggling balls, going round and round and up and down under somebody else's control. During the (not continuous, grand total of) forty-five minutes I slept the other night, I had a very vivid dream of myself, sitting in my uncle's car in the passenger seat. We were making the twenty minute trip we make four times a day (twice up, twice back, because he refuses to eat any place but home, and don't even get me started on that), traveling the now-familiar route. In the dream, I seemed normal and everything was fine, until suddenly, I just reached over and pulled the door handle - very calmly - and - like someone escaping a kidnapping - ninja-rolled my way out of the car. I landed on my feet and just walked away.

It wasn't until I felt the gigantic surge of relief in the dream that I realized just how hard this whole situation has been. How out of my own control I feel my life has gotten - not just right this minute, but in the grand scheme of things.

And there are, obviously, things in my life that I can do nothing about - my grandmother's stroke, my own illnesses, having to move, losing people I love - Those things are going to be there, are going to happen, no matter how hard I try to will them away, no matter how much I don't want them to be. I can't control those things. But I kind of just realized that I'm still trying to control them anyways... and that I'm fighting a losing battle.

Which doesn't mean I'm giving up - far from it. In fact, it just means that I have to do a better job of figuring out what I am in control of, and what I do have power over, so I can do a better job of focusing on those things.

I know: this seems like the simplest thing ever, and it also seems like something I should have gotten into my thick skull long before now, but it really is an ongoing thing - it isn't as if I haven't been working on this for the past fifteen years, it's more like I am re-realizing that I am focusing my energies in the wrong direction, and that I need to pay more attention to fixing that.

The more I worry about how nobody else is coming to visit Grandmother - I am one of seventeen grandchildren, who came from 9 children originally - the more upset I get. (Yes, the 17 and 9 are spread out across the country, but there are at least eight of us within easily driven distance, and at least three more of her kids. Total who've shown up? Three - each visiting once, for a relatively short period of time.) But getting mad about it, or feeling resentful that they're not going out of their way to get here does me no good. It does her no good. All I have to do is show up, get the word out, keep doing what I can do, and let the rest go. If other people make (what I see as) poor choices, then it's their loss. It's their decision, and there's nothing I can do to make them realize that they are missing out. I don't understand it, but I don't have to, either. I just have to be there for her, and hope that it is enough.

The more I fret and churn over a vicious fight between my two sisters, the less helpful I am to anybody - On a recent day, I managed to "ruin" both of their days by bringing up the other one, and ended every conversation in tears. It's not helping them, and it certainly isn't helping me. I won't stop trying to help them figure out how to move on (I don't think I can: it would hurt too much), but I have to realize that it isn't in my control. I can only do what I think needs to be done, say what I think needs to be said, and then leave the rest up to them. If they're not ready to hear it - as is obvious by the fact that I always wind up hurting them and myself when I try to get my point across - then I can't do anything more but be here when they're ready for me.

I can chatter till the cows come home, because empty space in a conversation makes me a tad bit uncomfortable, but I'm never going to make my uncle say a single word he doesn't want to say. So I better learn to appreciate that there is such a thing as companionable silence, and figure out how to enjoy it.

Now doesn't all that sound so lovely and mature and easy?

Yeah: the writing of it always makes me sound like I've figured it all out, but in reality? I'm going bit by bit, trial by trial, day by day.

(Although I have really figured out how to like silence. Sometimes I write the best blog posts in my head when he and I are just sitting in the same space, being together, but not having to say anything - how'd you like this one?)

*Douglas Adams

Always surviving

Today, my aunt packed up and headed back to Ohio at some ungodly hour of the morning, and after she left, my Grandmother knocked on the den door, came in and sat beside me on the bed. "I just said good-bye to Mac", she said, her voice low and thin.

I put my head on her shoulder, she put her head on mine. A few minutes later, she whispered "I just don't know if I'm ever going to see her again."

She was crying as she said it, and her tears made me want to flinch they were so heavy.

Then her hearing aid whistled at us, and she collected herself, pulled herself back in, saying that she shouldn't be leaning on my shoulder, because it hurts me.

As if I care.

But she bustled out, and I knew she needed to be alone for a few minutes: Because sometimes you just can't cry in front of other people; because sometimes you're afraid you might not be able to stop.

I sat on the bed, in the dark early morning, with the stupid birds chirping away outside the window, and the light trying to creep in through the cracks of the shades, and I thought about what it must be like to have to say goodbye to your child, never knowing if you'll see them again.

Of course none of us ever knows, but we each have our own false comforts of being young, or healthy, or knowing that you only have to wait till tomorrow, or that you're right down the street, or that you've had all your shots.

I thought about how scary it must be to have lived long enough to know that it doesn't matter how safe you are, how old you are, how prepared you are: no matter what, life and death happen. You can't control them.

To have lost everyone who came before you, to know there's nobody left between you and what comes next ? How frightening it must be to be 92 and to know that whatever time you have left, it's not going to be enough.


It's scary for me to think about that, to try to imagine my world without her, but I've scraped together the remnants of my own naive beliefs, and I wrap them around me like a cocoon of denial... it hurts too much to go there.


I can't imagine what it must be like for her, without the comforts -however false - to protect her heart.

After a while, I went out to the couch where she was laying down and I just sat and held her hand. The tears slid from her eyes, backwards toward the pillow, slowly now, but I could tell she'd been crying harder, by the dampness on her pillow.

She apologized for getting me up (again: as if I care).
"I love to see them come," she said, "but I hate to see them go."

And we were both silent for a while, and I can't be sure what she was thinking, but I know that I was thinking about all the people who've gone and never made it back: Three of her children, my father included, 10 years ago this week. Her husband. Her mother, her grandmother, all of her siblings. Nana. Uncles and aunts, cousins and friends.

People you said goodbye to like it was any other day, only it turned out not to be. People you clung to as you said goodbye, knowing there'd be no tomorrows. People you waved away, absentmindedly, only to regret it forever.
People who just... left.

And I thought about how brave you have to be to let the people you love out of your sight, even for a moment. Why can't we all just sit around holding hands all day, every day? (Yes, I realize that we'd all go crazy within 10 minutes, but still...)

She lost her mother when she was six years old, and she's managed to make it through everyday of the next 86 years, knowing how fragile life is, but not being able to do anything about it besides live. I know it's all we can do, but sometimes it seems like SO MUCH, like TOO MUCH. 86 years and counting of risking, and loving, and wishing and lasting, and trying, and fighting and fearing, and hoping, and just ... being.

And surviving - sometimes curled up in a ball, and other times with arms open wide - but always surviving.

To the workers at the Pacific Fatigue Lab and their supporters at the University of the Pacific -

In the next few days, I'm sure you will be inundated with e-mails from grateful patients who are just learning about your center and it's studies through the Phoenix Rising newsletter, but I still want my voice to be one among the many. I've been suffering from CFIDS/ME for the past 15 years: exactly one half of my life. This half of my life has been one of constant health challenges - everything from extreme vertigo to chronic pain, from sleeping 20 hours a day and still being exhausted to catching every cold, flu, virus or bug that waltzes past my window - and a million other strange symptoms that no doctor seems to be able to understand, let alone satisfactorily treat. And while I have managed to adapt, and continue to live my life to the best of my ability, there is always a sense of what this disease has stolen from me, from my friends and family, and what I know it continues to steal from the millions of patients around the world and their families and friends.

When I first got sick, I was a shy teenager who lived at the dance studio five days out of the week: I danced competitively, taught classes, and planned on making it my career. At the beginning of my illness, I took a week or two off, thinking that I would get better with rest, that this would just eventually pass. When it didn't, and I continued to sleep and not feel rested; continued to have to drag myself out of the bed to get ready for school only to have to lie down on the floor halfway through getting dressed; continued to need to be escorted from one class to another because I was too weak and would fall down the stairs, I started trying to make it back to the studio, but could only curl up in the corner when I got there, to fall asleep on the mats. I thought it was just like every other illness I'd ever had - I just had to push through it, deal with the pain, mind over matter: it could only get better. Eventually, when I realized that my efforts to try to dance were only making things worse - that the next day it would be twice as difficult to move, that I would be even slower, that I would need three or four days (and eventually three or four weeks) to recover - I had to give it up. It was enormously hard for me to do, and I still miss it, but it was the right thing to do for my health.

I honestly think that if doctors had had a test like the ones you all are trying, if they had known that exercising like I was would only make things worse, I would not have wound up as ill as I eventually became. I would've understood that my body wasn't capable of the things I was pushing it to do, and would've been able to explain that to others in my life - siblings, teachers, even doctors - who doubted me when all they had to go on was my word. I'm not saying that I still wouldn't have danced, or that I wouldn't have tried the various other things that have set me back over the course of fifteen years: being in a friend's wedding, traveling with my family, attending college - some things are worth the setbacks, some things you do because you can't not, even knowing the consequences. I still have to live my life: what I am saying is that I think my experience with this illness - and the experience of many other patients - would've been vastly different - and hopefully, vastly improved - if we were believed from the beginning; if treatments were based on solid evidence and were therefore helpful; and if we had some understanding of just what is wrong with us.

If the work you are doing right now, and the work I hope you will get to do in the future, produces the kind of results that enable aCFIDS /ME sufferer to say "Listen, this is why my body isn't working the way I want it to," or "I'm not depressed or crazy or lazy - these specific things are going haywire in my ability to produce energy," than you will have done more than you can ever understand. So I just wanted to say "thank you," and to let you know that - while I understand that your studies are not the cure-all I continue to pray for - your work is greatly appreciated by those of us who just want to know why, who need the answers, and the proof, and the hope that you all are working on providing.

Thank you.

Sincerely,
NTE

Words of Wisdom

I spend way too much time thinking about the past. I remember the me that used to be, the me that told people everything, that had a wide circle of friends I could call, in tears, whenever I needed to, and I wonder when I closed myself off, I wonder if this is just part of growing up, growing old, or if there’s really something wrong with me now and I wonder what I’d have to do to let other people in again.

From Princess Nebraska

One of the greatest challenges of living with a chronic illness is the sense of isolation it can bring. It can be devastating to suddenly (or not so suddenly, depending on the situation)find yourself in a place where nobody else seems to understand, where you have nothing in common with those around you, where you are left facing an illness - and all of its many challenges - on your own. I was 15 when my illness changed my life forever, and almost immediately, I began to feel disconnected from my friends and peers - but by experience rather than time or distance.

In high school I was different because I didn't date or go to parties. I never drank or smoked pot (big deals at my high school, anyways), I couldn't drive, & I didn't skip classes because I knew I'd need the sick days for actual sickness. I missed the prime gossip hours - lunch, study hall, walking home from school - because I only showed up to go to classes, and then went home and crashed, or I was homeschooled (when things were really bad). I had to stop dancing, and those 'friends' disappeared from my life immediately - I can remember showing up to the next year's recital - the recitals I had previously felt like I owned, the recital where I was supposed to finally have earned the right to a solo - and feeling like an intruder, feeling worthless & forgotten. I had no enemies, and managed to maintain one or two close friends, but we still had spaces between us - inside jokes I didn't understand anymore, trips I couldn't take, heartbreaks I couldn't nurse them through with cookie dough and sleepovers.

During college, things were much better - living on campus brought me independence, brought me a community of girls who bonded with me over papers and boredom, the frenzy of finals and the loathing of lesson plans. I loved them, and they loved me, and they somehow - amazingly, to me, it seemed - managed to understand who I was and that I wasn't just this weird combination of illnesses. But there were still things that branded me as an outsider - I went home on the weekends because the sensory overload in the dorms was too much for me. I didn't have boyfriends who broke my heart or hangovers that lasted two days. My wheelchair accessible dorm was fine, but the student center, the theater were the plays were held, the alumni center were committees were formed were all off limits to me. When my friends would plan their birthday parties, they'd always include a stop by my room: we'd take pictures, I'd give them my gift, they'd preen, I'd send them off for a night on the town. These pictures are bittersweet to me now - having friends who cared enough to come by at all is sometimes overshadowed by the fact that they were on their way to a night full of fun and I was on my way to bed. (4 years of college and maybe 17 pictures, all following the same pattern - the group of us sitting on my bed in my dorm room, them dressed to the nines and me in my pjs.)

After we graduated, the gap began to widen again: my friends started getting married almost immediately, a few of them had kids right away, and they all had jobs. They all got jobs and husbands, eventually homes and kids. I wound up with doctor's appointments, random rare diseases, a datebook filled with medical tests; fabulous kids that I play auntie to, but who go home at the end of the day, and the same twin bed I've had since I was 16.

(I know that there's more to my life than that last sentence, I'm just trying to make a point about the gap I've been feeling lately.)


"What are you doing now?" "Where do you work?" "Are you seeing anyone?" These are all routine questions, to which I have very un-routine answers (at least for my age group). Most almost 30 year-olds work. Most almost 30 year-olds date or are in serious relationships. A lot of them have kids, mortgages, cars to buy, bills to pay. I do have a lot: this isn't about that. I know I have a lot to be grateful for, a lot of happiness inducing, valuable people in my life, a lot of interesting & intriguing ways I spend my time... this post isn't about me feeling sorry for myself (or, at least it's not meant to be), it's about how hard it is to be connected, to stay connected to people you care about when you have so little in common.

It's about how strange it feels to have no 'real' answer to everyday questions - when you're friended on Facebook by an old acquaintance who asks how you are and what you're doing now.... why it's so difficult not to just skirt the truth, to not want to just make up some better, more acceptable answer. It may be a necessity that I'm not working, it may even be a blessing that I am able to devote so much of my life to being with the people I love, but that doesn't make it easier to say that I don't have a job because I'm too ill to work right now.

It's about how left behind you begin to feel when all of your friends are doing adult things - hell, when you're little sisters are doing adult things - and you still feel like you're living the same life you were living 12 years ago. I did go to college - it was a challenge I am so proud of myself for conquering - but I got so sick afterwards that I couldn't put it to use, and now, 8 years later, I'm still here, still stuck. So it's hard to be the one to pick up the phone and call one of the girls from college and say "Hey, come and visit me: let me just let my parents know first."

The Internet - particularly the blogosphere - has been really helpful for me with all of this, helping me to find new peers, to connect to other people like me. Peer groups need not be just by age, after all - having friends of all ages who can understand your experiences can be vital too: I've bonded with readers, with photographers, with aunties, with other young adults with chronic illness. Having people who have faced some of the same challenges in connecting with the 'real' world, who feel the same sort of disconnect has been really important for me and has, at times, kept me from becoming completely isolated from non-family people. It's one of the things I like best about the blogosphere - there seems to be no end of blogs written by outsiders, by the non-cool kids, by the uncliqued masses (Sure, there's some clique-y-ness every now and then, but by and large.) I have made real, true friends online, and I never expected the blessing of that.

It's just that lately, I've been feeling this disconnect between me and my IRL friends pretty keenly: there's been a rash of pregnancies - and second pregnancies when I've never met the first baby in person; my oldest friend (I'm talking 2nd grade here people) is getting married in October and I've yet to meet her fiance, even though they've been dating for 3 years; I'm finding out secondhand & after the fact that there are parties, shindigs,& get togethers that I would usually be invited to (and have to decline) that I never knew about (and I honestly don't know which is worse: the having to decline or the not getting the opportunity to)... It just feels like I haven't put enough effort into these relationships, and they are crumbling around me.

Think about your own life - think about the best friend you lost touch with after high school ended, the acquaintance you used to send a Christmas card to until you just forgot one year, the woman from your kid's little league games that you talked to 3 days a week and now never see - and about how easy it is to lose those ties. Now think about how much easier it would be to lose the connection if one of your friends hardly ever left her house - how quickly you might get sick of inviting her places if she always says no, how awkward you might start to feel about letting her know the good things that were going on in your life if you think she's got very few positive things in hers, how rapidly life runs away with you so that you never have a moment to sit down and put the fact that you're thinking about her into action.

I've been really good at keeping up virtually - I always send birthday cards (almost always on time); I comment on their kids' pictures & send presents signed 'honorary auntie NTE'; I pledge money when they run marathons and donate to the 'in lieu of flower' organization of their family's choice if someone they love passes away. But I can count on one hand the number of times I've actually been in the same room with most of them (excepting Best Friend/College Roommate) in the past 8 years.

So I've been thinking about how to do better at this, and I think the key is not to wait. Not to wait until I feel 'better' enough, not to wait until I feel like I've got more interesting things going on. I'm so horrible at this (we've talked about how I hate the phone. And how I am actually shy in real life and get embarrassed really easily and on and on and on) but I'm going to try not to let myself make excuses. I'm going to write an e-mail this week to at least one friend and see if she can't carve out some time for me. And then I'll carve out some time for her.

Because I do need those people in my life that I can call when I'm sad and need cheering up, that I would answer the phone for even in the middle of an un-Tivoed, brand new episode of The Office, that I get to see the engagement rings of and rub the pregnant bellies of. Because I think I am a good friend, and that's not something I'm willing to put on hold any longer.

Oh, boy, I don't know

I'm trying to figure out the right thing to do in a couple of different circumstances, and have come down with a bad case of the "well... maybes".

I do not like the "well ... maybes": being indecisive sucks. I hate it when other people can't make up their minds and commit to a freaking plan already, and I hate it even more when I'm the one holding up the works. Usually, like in these situations now, the hold up is a health issue... I just don't know whether or not I will be able to - or should - participate.

Scenario #1 is relatively nothing - tomorrow a bunch of my family members are going to check out the possible house, to make sure that there's nothing readily and obviously wrong with it that will take big bucks (bucks we don't have) to fix it. I'm supposed to go, but I'm on the fence: Do I put my energy here, when it's all still so hypothetical? My parents visited last weekend, and now they're calling for submissions, basically: "Help us make sure this place is OK." Which, ordinarily - fine: bring whomever you want, sounds great.... the more eyes the better. And I'd like my eyes to be involved... it's just that there are two steps up to get in (which, obviously, we'd address if we bought it), and then there's all the questions - odors, pets, etc. And to I absolutely need to go? And maybe I'm just being overly sensitive because of Scenario #2 ...

Scenario #2 is much more important. My cousin Kate is having a baby shower, at her parents house, in March. We got our invitations this week, and I asked her big brother about the accessibility of the house (since I've never been): he says there's steps, but that he talked to his dad and he's going to see about a ramp for the few steps in the front of the house. OK, that's not making me wicked comfortable, but it all may be moot because there's also a cat. A cat. Ordinarily? A cat automatically equals, 'I'm sorry, but I can't come," but the cat is a basement cat, and lives not where the people live, mostly. So now I'm stuck wondering - risk it or not?

I love my cousin, I'm wicked excited about her baby, and I hate to miss a family party, so those are all on the "Give it a try" side, but on the other hand, we've got the possibility of an unstable ramp (or having to be lifted, which NO Thank You), the fact that there's an animal in the vicinity, and the fact that the house is a good 50 minutes away, so there's no escape plan, really: If we get there and I can't stay in the house, I've got to either stay in the car while the party is happening (which, if you can believe it, would totally not be the first time that happened), or make somebody leave to take me home (if it gets really bad).

Pros, cons, and WTFs leave NTE pretty deep in the "well ... maybes".

The more I think about it, the more I both want to go and pretty much know that I shouldn't - between odors and my breathing (which has been pretty sucky since Christmas, as my tonsils are still as big as a baby's fist), and the pain of sitting in the car, sitting at the party, then sitting in the car again... It would all be a lot, just under normal circumstances. If I'm adding in potential pet hair and crickety stairs, then the scale tips pretty far over to the no-go side.

But then I think about being able to pat my cousin's (apparently large) tummy, the fact that her mother is kind of a source of scandal in the family (haven't seen her in... at least 10 years, and now she's HOSTING? C'mon, man.), and the fact that most of the people I love will be there (some coming from pretty far away), and it tilts the scale back a bit again.

Need versus should, I guess. Optimism vs realism, vs. pessimism. I hate to let people down, and I hate to be left out, but I can't really see a way to make Scenario #2 work in my favor.

Grr... I had kinda hoped that writing it all out like this would make other pros pop into my head, but I'm running out. Crap.

And then, of course, if I can't go, I've got to explain that I can't go, after my cousin has already talked to his dad about the ramp and all that, and that makes me feel bad too.

Blah.

Must switch brain to new topic or risk explosion.

.... I put a new widget on the sidebar, so you can see all the things I'm finding interesting in my Google Reader: also, it's reminding me that it's probably time to fix the template so that it's not quite so Christmassy.

And, in other news, I bought some scratch tickets and won hundred thousand dollars. Actually, I bought some scratch tickets and haven't scratched them off yet, but I was just trying out that positive thinking thing my CBT therapist has been talking to me about. :D Update: I have won $4... I don't think I'm quite getting the hang of this.

So I know I've been lax in the coming back blogging, but I find that I am still running really, really slowly. Like my energy tank (which is always at about a quarter full anyways) totally forgot how to distribute that quarter tank to the places it needs to go. I'm doing a lot of wheezing, a lot of sitting up too fast and having my head spin and almost blacking out, a lot of stuff I thought I was pretty much adapted to, but am apparently not. (Actually, it's kind of pissing me off this whole "Just when I think I get used to how things are and have stuff at a vaguely controlled level, my body decides to screw with me some more and start all over again" crap is beyond irritating, but I am still feeling so SO much better than I was two weeks ago, so it feels sort of petty to complain now. We'll see, as time goes on if that attitude sticks or not.)

I do keep thinking of things to blog, even look over at the computer and will my thoughts to go from my brain directly onto the screen without any additional effort on my part, but I have yet to master this skill (any tips?), and so posts remain unwritten.

In the meantime, I have been (very, very slowly) combing through the 1000+ items in my Google Reader, and here are a few of the posts I read today that I thought "Hey I could've written that!" (Except it never would've come out this good, so you're lucky I'm pointing you to them...) and in an effort to both highlight exceptional posts and clean out my brain a little bit, I give you some links:


Amalah asks: "Can't anyone just be SAD anymore?" and one of her commenters leaves the brilliant reply that there is a difference between "rational sadness and irrational sadness". That comment really lit up parts of my brain that have been taking me to task for not accomplishing all I should (/want/need to) be accomplishing right now...sometimes there are reasons for taking it slow, and that's ok. Sometimes there are reasons for being sad, and that's alright. It's the times when there is no rationale, no reasoning: those are the times you have to worry about. (In other words: cut yourself some slack, dummy.)

Melissa over at Suburban Bliss writes a familiar-feeling post about moving that hits really close to home:

"The problem with moving when you're practicing Extreme Denial is you don't actually pack anything when you're preparing for a pretend move. You tend to think you'll "pretend pack" when the "pretend move" is closer."

We signed our package and sale yesterday. We have till March 30th to vacate the premises. We still have nowhere to vacate to, are living in a mess of boxes and stuff (but not stuff in boxes) and I am stuck somewhere between extreme panic and extreme denial... but mostly I'm just stuck.

Y'all know how close I am to my mom, and how hard it has been this past year when she hasn't been all... here. She's been dealing with losing her mother, her house, & almost her sister; she has her own health issues, all of the stuff I have been ranting about here - the wedding stress, my brother and his 'wife', dad, the kiddos, me, and on and on and on - a million plus things to deal with, so I'm not saying she doesn't have a perfect right to be as checked out as she needs to be, but I think this is a safe enough place to say that it hurts. It hurts me to not be able to say the words that she needs to hear, to not be able to ask her to say the words I need to hear - the wanting to make things easier for her, winds up, inevitably, making things harder for me.
(Not just emotionally, but physically too: there are a lot of things I could use help on that I hesitate to ask for help because it's just not good timing. Having her as my PCA and not being able to ask for what I need has been a whole hateful level of awkward and awful to our relationship.) Chicken and Cheese talks about her own relationship with her mother, and how the stresses of her life keep piling up, and how frustrating it is to know that you've had this plan, and how "it turns out that plan was built out of Popsicle sticks." I'm feeling very "Popsicle stick" built myself, lately, and that post made me cry a little.

On Sunday, I went to another wake. My best friend/college roommate's husband's grandmother, a lady I met only briefly and barely knew died last week, after a frighteningly quick battle with pancreatic cancer. My roommate's favorite in-law, and a sweet woman, with a wonderful best friend who I sat with at the wake and listened to for an hour. Last month, I was too sick to go to the wake of my Nana's cousin in-law, the kleptomaniac who eventually went almost completely blind but still insisted on writing her own Christmas cards ("Merry Christmas, Love Irene - Sorry this is messy but I am blind you know.") Basically, I am sick of going to wakes, to funerals, to places of grief. I am sick of grieving. And yet, it's not going anywhere, it's a part of our lives. But I'm with Meredith: It just doesn't seem right.

cancer is not something you expect to hear on a friday morning. not ever. not on a sunny day when life is already out of balance. cancer is not something that creeps into a man so alive, so tan, so good at doing hand stands for his kids at the community pool all those years ago.

my dad can’t have cancer.
not today.
not tomorrow.
not ever.

The Servant over at Serving the Queens lost someone that matters to her, recently, and she talks beautifully, heartbreakingly, about loss and love:

For the time being, these things do not change what is the truth to me right now, and that truth is achingly painful, and I am indescribably sad.
He is gone.
And so I weep.

I'll keep them, and their families, in my prayers, and keep hoping for them as I hope for all of us.

Looking back, it seems like my brain is full of sadder things, but that I'm in good company. I do hope that we'll all be feeling better, soon. That life will start giving us some breaks, give us a chance to catch our collective breath.

Hope you are breathing well, and I be back!

Stark Numbers

For a few weeks now, I've been seeing a behavioral specialist that my new primary care doctor recommended. At our first appointment, I told her that I was looking for new - to me - ways to manage my pain, up to and including heroin. I may have been joking, but I'm not entirely sure I will be able to say the same three weeks from now if this pain continues unchecked as it has been. (Yes: the Lyrica helps. It helps so marginally, though, that I'd stop taking it if that margin wasn't the difference between "needs to be committed because she can't stop screaming from pain" and "is able to limit screams just to when people touch her".) So she recommended a behavioral specialist that helps people with chronic illnesses find new ways of coping with the pain. I probably still would have preferred the drugs, but I went anyways. I went because my pain and I? We're so tangled up together that there's really no separating it from me anymore, and I just don't want to live like that: it isn't how I need my life to be. So, if it isn't going to get better/go away, then I need to deal with it better, because I feel sometimes that it is swallowing me whole.

The specialist is actually part of a group, and since I couldn't see her, I'm seeing an intern, who I really like. She's very nice, and has managed to - in the two sessions we've had - grasp what I am trying to say even when I feel like I am babbling like a fool. We talked a lot about how I am managing (or not managing) the challenges of living with chronic pain and illness, and she's going to see what she can do for me as far as additional strategies go. At the end of our last session, two weeks ago, she gave me a homework assignment, which was to track my pain. She gave me a week's worth of worksheets (she was sick last week, which is why I didn't have an appt.), and told me to try to circle a number for pain every hour I was awake.

This is not a new experience for me: in 14 years of dealing with this, if I hadn't have somehow tried to keep track of good days and bad days by now, then I don't know that you could call me very smart at all. But it's been a few years since I've done it, in that way that things come up - babies get born and start wiping poop on your face, houses get sold and you have to pack all your belongings up in under 2 months, grandmothers get sick and die in the same short time period - and you get too busy to do more record keeping type stuff. So, I had no problem doing it again.

I think, a lot of the time, that the people in my life are confused about my pain: they think I'm either exaggerating or that it can't possibly be as bad as it sounds. The thing is? I know that I actually understate the whole thing, so as not to spend each day focused solely on myself, so that I don't seem like a constant complainer who nobody ever wants to be around. I try to only grimace when Lil Girl hugs me or my uncle pats me on the back, rather than bursting into tears, which is how bad it truly hurts. I try not to moan every time I move, like my dad does when his back is killing him, because I hate that! I try to keep the whining to a minimum; try to do for myself when I can so that when I can't someone is willing to help; try to make my life as ordinary as it can be.

But the truth is?

During all of that, I am in pain. A lot of pain.

Always. It doesn't go away, not ever.

When I go to the doctor and say "I can't remember a pain free day. I don't remember what that feels like anymore." Or "my pain is 7 out of 10 - on a GOOD day," I am not exaggerating: that is as honest as I can be.


But I can't explain how I do manage to get up and get dressed (some days) and watch Lil Girl or try to go shopping or scrapbook or make cookies or any of the relatively small things I do that make up my every day. I can't explain it satisfactorily to myself, let alone to other people. "If your pain is that high, if you're really not sleeping more than 2-3 hours a night,you wouldn't even be able to function" a family member said to me recently. And the truth is? That sounds right to me, but I know it's wrong: I make it through my days, doing what I can do, living with what I can't do, because that's what I have to do. I don't have a choice - it's just the way it is. This is the functioning I am able to do, so it's what I do.

The pain is not going to go away if I wait long enough; the fatigue isn't going to get better no matter how long I rest (3 years of sleeping 18 hours a day certainly cleared up that mystery for me), and time is going to pass, life is going to move on whether I do anything or not, so I do what I have to do.

And now I'm wandering away from my point (there's a point) more than a little.

My point was that seeing my pain quantified in those little charts (which, because I am sad, I have since converted into an Excel worksheet. Complete with graphs. Seriously: professional student much?) was a surprise to me.

Not that I didn't know the actuality of living my life, but seeing these numbers? Has really brought up a lot of conflicting emotions for me.

It's made me angry, because I see how much of my life is really consumed by pain. There's no real emerging pattern, which drives me crazy. It's so frustrating to see it all in black and white (and colors: wait till you see the colors) because I just want to erase all the high numbers and start over. It's also made me really conscious of the levels of pain - having to seriously consider where I was at, every hour, made it more possible to see all the different yet subtle ways I was feeling better or worse.

I want to print it out and stick it on the refrigerator, or e-mail it to everyone I know or ever met and be like: "See?!? This is what it's like to be me: This is what I'm dealing with. Look at all those 5s and 4s!!! Now ask me again why I'm not working but instead 'sucking up your social security'!" At the same time, I want to hide it... I'm a little bit ashamed of it, that it's gotten this bad. I want to ignore it, to not have to face it.

It makes me want to cry - with grief, because this is my reality and there is no ignoring it and with relief, because I'm not going crazy, it really is as bad as it seems.

And it makes me hope, really hope, that when I go in for my appointment tomorrow, she'll have some magic up her sleeve. It's the season for miracles, right?

Idea for the day

Some wisdom for your Wednesday...

"Buy Books for the Holidays is a collaborative blog that will showcase books, serve as a central point where we can all report our progress, give bloggers a chance to showcase reviews by genre, help people find the perfect book for that difficult or challenging person on your list, announce internet or bookstore specials, and raise awareness of literacy charities to promote a culture of reading in the future."

I'm totally on board...



and you should be too.

Hope

Tomorrow, we vote. I'm not going to tell you who to vote for, although I think you'll be able to figure out where I stand in the next few minutes - I'm just going to remind you that vital to vote, because what you care about matters.

The past 8 years, and the two presidential elections I've been eligible to vote in, my candidate has won my state, but lost the country. 4 years ago, when Bush (II) was reelected, I literally cried, amazed that parts of our country were either so blind or so stupid as to want to continue the policies that I felt were ruining a lot of what is good about this country. I'm still amazed, but now I don't know that they were stupid or naive, just that they've been scared. I've been scared too, and I'm still pretty scared. Scared that tomorrow night won't go the way I think it should, and I will be stuck with another four years of policies that go against what I believe in, another four years of someone who doesn't really know what they are doing. Scared that I'll have yet another president I feel I will someday have to apologize to my children for. I hope that won't be true, but I really thought it wouldn't be true four years ago, so I'll just have to wait and see.

I'm sick of being scared, and while I know that Obama is not the Almighty returned to earth, and that his (please god) presidency will be full of ups and downs and trials galore, I also think that he will at least try. He will make an effort to address all of the injustices that I see everyday. At least, that's what I hope.

And hoping, sometimes, is all we have.

"To be hopeful in bad times is not just foolishly romantic.
It is based on the fact that human history is a history not only of cruelty, but also of compassion, sacrifice, courage, kindness. What we choose to emphasize in this complex history will determine our lives. If we see only the worst, it destroys our capacity to do something. If we remember those times and places — and there are so many — where people have behaved magnificently, this gives us the energy to act, and at least the possibility of sending this spinning top of a world in a different direction. And if we do act, in however small a way, we don’t have to wait for some grand utopian future. The future is an infinite succession of presents, and to live now as we think human beings should live, in defiance of all that is bad around us, is itself a marvelous victory." — Howard Zinn