Monday, October 21, 2013

Thoughts on my ill-aversary

Today’s my ill-aversary. The last day I remember being well was October 19, 1994.  I was 15 years old, and spent the day with my friends, painting @ a hospice with a volunteer group, then running around Boston via the T with the kind of joy that only those who’ve just recently been allowed to go places unsupervised can muster for subway rides.
The next day I woke up unable to swallow and I felt like I was wearing a dozen coats made of lead.  I was exhausted in a way I’d never felt before, I had a super high fever, tears leaked out of my eyes when I tried to move, and (what turned out to be the first of so many unhelpful) emergency room visits told me that I would just have to wait out my “unidentifiable virus”. Except it just never went away. image
From there, to mono, to ‘infectious process undetermined’ to ‘autoimmune disease as yet undiagnosed’; through CFIDS and Fibro and POTS and asthma and walking pneumonia and shingles and ‘genetic issues’ and migraines and whatever the hell else is wrong with my immune system and disaster area of a body at this specific moment in time. Most days, I figure I have a pretty good handle on how to live the chronic life.
But today, when I remember the girl I was 19 years ago (and knowing full well that who you are when you are 15 is awfully different from who you are when you are 34, chronic illness or not) I’m sad for her.  The girl who thought she was going to be a dance teacher, and woke up one day unable to stand long enough to turn the music on for her class. Who tried to keep dancing but, eventually, between the passing out and the feeling like she was having a hard attack every time she moved, had to stop. The girl who was shy but worked so hard to make new friends, who saw a lot of those friends disappear when her symptoms kept her home, again, always.  The girl who just didn’t understand why she couldn’t MAKE HERSELF GET BETTER, no matter how hard she tried, no matter how closely she followed the doctors’ directions, no matter what witchdoctor-y potion she willingly swallowed.
I want to go back and give her a hug and tell her I believe her: which was the thing she needed to hear the most back then, when even the people that ‘believed’ her had their doubts. When even she had her doubts.
I want to tell her that - even though she won’t get better (and will, in a lot of physical ways, get worse) - that it’s still worth sticking around. That the chronic/spoonie life is definitely living life at the hardest level, and I’m sorry we have to do that, but we are going to do that. Even when it feels like we absolutely can. not. for. one. more. day.
There was internet when I was 15 - bare bones internet: DIAL UP internet , but there was no Tumblr (There weren’t dinosaurs either, though, you whippersnappers): at first, I was so alone with my illnesses that I might as well have been in Siberia compared to everyone around me. My friends didn’t get it, my family often felt I was exaggerating, my doctors kept saying to push myself harder, not understanding that - the type of kid I was - I would push myself so hard that I wound up in the hospital (a lot). I remember that girl, and how alone she was.
And then I found the corner of internet that I needed to find: There were listservs (which, again: dinosaurs), filled with other kids/teenagers who were just sick as I was. Who got it. Who didn’t have the words ‘complainer’ or ‘lazy’ superimposed over their mental pictures of me. Who helped me understand that I was more than just the sick girl.  The CFS-Y (and later CFS-20s) groups were my link to people like me: and once I knew they were out there, I had to keep finding them.
From the listservs to forums, to my own blog and the blogs of zillions of other spoonies, to Tumblr - I honestly don’t know what would have become of that girl if she didn’t have people who understood, somewhere out there in space, to talk to. And not just other spoonies, but just people who listened and got it, and let me talk, and heard me. Even now, when I’ve got a family who (mostly) gets it, and friends who try: to have this space out here to say what I need to say, and to see that there are other people who are dealing with the same crap as me? It’s invaluable.
IDK where this is going: I started out feeling really sorry for myself because, 19 years ago, I was a different girl… Who isn’t that true for? And I’m still sad for me/her - for that life I wanted that wasn’t to be.  I’m sad today for the things I want (work and family and adventures) that just aren’t possible for me right now, because of how sick I am. And that sucks, big time. And it sneaks up on you, even when you think you’ve got a handle on it.
But also? I want to say thanks; Because the only reason I’ve even partially got a handle on it is because other people get it. Because there’s people out there listening. And sharing their stuff too, to make me feel less like I’m stuck in Azkaban all on my own, Dementors roaming & waiting for me to try to escape.


(cross posted on my tumblr)

Wednesday, October 09, 2013

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?