My Grandmother's birthday is this month. This week now. Sometimes, when someone dies, the anniversary of their birth or death just sneaks up on you, or (if you're lucky) right by you. As someone who's lost (I was going to say a 'fair' number, but 'fair' doesn't enter into the conversation when you're talking about death, so I'll stick with) more than one person I loved, I've lived through loss long enough to know that it (mostly) does fade enough so that some years a birthday or death day will come and all I'll feel is that tug of longing, that twinge of regret that I no longer have that person in my daily life.
But firsts? Firsts of anything are ripe old bitches - and I know that I have been not been doing particularly well with my grieving process in the first place, this time around.
Mostly I feel like everybody else moved on, and I'm still stuck in last summer, holding the hands of a woman whose face I'm trying to carve into my memory as I watch my face fade from hers.
I can't explain how powerfully & profoundly that experience has changed me, and yet - nothing else has changed! She's still not here, and I still am: stuck in my bed, in this house, in this life that I don't want or recognize, but lacking the ideas, strength (physically & mentally), and just plain energy to do anything about it.
And now her birthday is coming up, and I'm hyper-aware of it. As in, I usually have no idea what the actual date is, unless I have a doctor's appointment in the near future, but ever since July 1, the calendar has been mocking me. It's been a constant, in my face, reminder that JULY IS HER BIRTHDAY and HER BIRTHDAY IS COMING, PREPARE TO CRY. The date has been getting closer and closer, and my mood has been getting darker and darker.
I think about how, for most people, Friday will have no meaning at all... even in our family, Grandmother's actual birth date was always one of those "Is it the 17th form 1919 or the 19th from 1917 or maybe it's the 21st?" kind of deals. (My family is bad at dates. Also time. Also lots of other things that matter to me a lot, which you can see would be kind of frustrating.) And for me, Friday is a huge, looming, taunting thing that I'm trying desperately to avoid, knowing it's going to come and suffocate me anyways.
Because, as I said, I'm no amateur at this whole grieving thing (even if it feels like I am, every. single. time.), I've done my best to keep occupied, knowing that distraction is one of my best coping skills. I've tried making plans for the actual date - my best friend is in New York, all my siblings are working, Mom says she is up for anything, but lately it's all she can do to not melt into a puddle every time she ventures out into the hot - and I think I've wrangled myself into a kiddo sleepover, finally, but - like everything else this summer - it's complicated too. No Longer Youngest Nephew (soon to be by the power of two, come to think of it) is 13 now, and .... while he's up for games and stuff, it's as if when his voice cracked, his preferences for spending time with me did also. It's not that he doesn't love me, or that we can't still have a good time together every now and then, but he'd rather be with aunts who drive cars to New Hampshire where he can hang out with his older cousins, or aunts and uncles who let him watch R rated movies and take him to hockey games. The largely sedentary Auntie NTE is no longer first (or even, honestly, second or third- which would be sitting at home playing video games) choice and, wow does that sting.
Still, I'll be glad to have them here on Friday, to give me something other than my own gloom to focus on. And - even though I know it is, in part, because of the overwhelming upcoming birthday - Holy Jupiter has this month (/season/past 9 months) been full of gloom for me. Let me just mention this one other thing, real quick, that kind of explains why I've been avoiding this space and writing in general for the last little (ok long) while:
Along with the gloom, which I recognize as both a normal part of grieving and a truly hideous part of grief, I've also been experiencing something a little bit more troubling, because it dabbles its feet in the "how close are we to the edge of depression here, really" pond, and that's terrifying to me. It's something that has been growing since before she died, when I felt like it was just me and UJ in the trenches and everybody else was sending care packages every now and then, but had no idea what it was truly like to be waging war against a disease that made you a stranger to the person you loved so much. And it blossomed once we lost her, and then my sister & her husband were forced to move out, and my mom's depression spiralled downwards, and everybody I knew was fighting their own ridiculously hard battle, and asking for my help, sure, but you can't tell people how alone you feel when they're crying on your shoulder. And somehow, even though I've tried reaching out, I am left, once again, feeling forgotten and outlived.
Which is not the kind of thing you can say to your pregnant baby sister, or your other baby sister who moved to the middle of nowhere again, or your other baby sister who you're so fucking proud of you could burst, but miss more than air sometimes - but it's how I feel. And even though I know that my family is not, in fact, "leaving me behind" (and also that it's not their responsibility to make me feel better about feeling left out, really), but it's kind of hard not to feel that way when you've experienced it so often, just by virtue of being the sick one. First with my high school friends, then when all my college friends started getting jobs and getting married, then when they all had their first round of kids, then their second (and some are now on their third), and this may sound weird, and horrible and selfish, but it recently just occurred to me that this is the first time that I have been the only one living at home, and it makes me feel (ancient and weak and useless and pathetic) a whole boatload of things that I know I am not, but still am feeling.
And, oh my god, so fucking lonely.
Which is why tumblr has been great, because: So many spoonies! and some of them are old like me! (Because holy jebus, the teenagers. Talk about feeling ancient.) So, less lonely: here I come. And a lot of them feel left behind too. So I don't feel so ridiculous about both loving the sight of my sister's gorgeous baby bump (Seriously? She's one of those adorable pregnant people who glow so much they nearly sparkle.) and still being so sad that it isn't me. One of my other sisters recently lost a ton of weight by eating healthy and doing an exercise program, and I was so glad for her, and at the same time, I kind of wanted to punch her in the face. Because I've eaten nothing but cardboard for a year, and I've eaten 3/4 fruits and vegetables for the last 2 years, and I still can't stand up without wanting to die. I miss moving my body and feeling good about it and not resenting everything it took away from me. I miss trusting it. (That's one of her big things, this hippie-crunchy sister of mine, "trust your body, it knows what it needs" which is almost so naive as to be cute, except for how my body apparently knows that it needs to lay on the floor a lot and never move, and make me feel like I'm constantly being crushed by the air? my clothes? gravity? So yeah: hilarious. And rage inducing.)
So, yeah: it's been a rough couple of months - not without its rays of sunshine, of course. In the forms of a family wedding and house guests who like to chat; a baby shower in the making; a couple of kids who grow like weeds having birthdays; a trip to the movies; a birthday trip out for me that included chocolate fondue and a book signing (which - heaven, right?); and even little things like a couple of really good books (a new JK Rowling under a pseudonym? Must acquire immediately!); coming up on finishing a really large (3+years) project; starting some new crafty things; making sisters laugh when they feel like they never will again; a pining Robb Stark (I'll post a picture this week); and learning how to apply makeup correctly for the first time in my life, via Youtube videos.
But this is going to be a hard week, and I'm going to need as much sunshine as possible to make it through, so if you have any, please feel free to share in the comments. Hope your weeks/months are going a little bit cheery-er, and even if they're not, at least you know you're not alone. {God everything I'm writing today is like a therapy session: I'm sorry internet. (I'm not really sorry - it felt kind of good to acknowledge that shit.)}
Showing posts with label don't want. Show all posts
Showing posts with label don't want. Show all posts
Tuesday, July 16, 2013
Thursday, June 20, 2013
Plus also, my dad's been on sick leave/vacation for three weeks, and summer vacation starts Tuesday for the kids, so: totally fine!
So, one of my biggest problems with this space is that it is both awesome and pressure all at the same time. Good pressure, but still. Hoping to start up the daily blogging thing again come July, if only because it'll give me a reason to keep the door closed and the TV off. But I'm working on some things, some projects, in the meantime. Got stuff brewing. Doing a little bit of non-blog writing every now and then, even. But there's also been a bunch of family stuff (always), and a severe spoon shortage (also always), so I'm only getting through about a third of my to-do list.
Oh, and that's not even mentioning the doctor drama, wherein I (yet again) get dumped by my primary care doctor and have to scramble to find a (MassHealth accepting) replacement. (Which I have yet to do: joy of joys!) And how that screws up every single other doctor and specialist I have to see, all because, well - she don't know what to do with me anymore, and she's sick of trying and having more things go wrong? Guess who else feels exactly that same way? But doesn't have the luxury of bailing? This girl, right here! Although her official complaint was that Zack was taking over more and more of my care, and 'he's not in our network, so I don't get his notes right away and that's not a viable way to provide care.' So... because your computers don't speak the same exact language and it takes a couple of weeks for things to get filtered through to you...? Mmhmm: Not Buying It.
I knew it was coming - I am not a debutante dumpee, after all - a few months back when she started talking about how the hospital was consolidating referrals and maybe I'd have to start switching some of my specialists over to new ones. Which would mean finding at least six new specialists and starting from scratch with all of them, ON TOP OF leaving Zach, which I am just unwilling to do, instead of just, say finding a new primary care doc. She was quick to point out that it would be easier on me to find a new PCP, probably, in long run, didn't I think? Well, actually, I think the whole system is beyond asinine, because the person I see the most can't be my 'primary care' and everybody else gets pissy over the fact that I want to see him so often, even though he's the only one who, you know, actually tries to help me by doing things?
As opposed to the lot of you who say things like "It's chronic illness and you'll just have to learn to adapt better" or "If you lose a couple of pounds that might go a long way" (it did not, by the way: I have felt no better at 150 than I did at 200, I was considerable worse at 165 than I was at either of those, so .... shove it?) and "with all these new problems cropping up, it's hard to know where to start with you, so I'm not comfortable doing anything." (Seriously: that last is an exact quote. Too. Many. Things. Don't. Want. To. Help. With. Any. Of. Them. Screw You.)
So, I've got one more appt with her - my soon-to-be ex-PCP - next week, during which she will help with exactly zero things, probably google half of the things I tell her, and randomly search the network for test results that should have been back weeks ago, and then I have to hit the phones again. For the ... third time in under five years? With no guarantees that I can find anybody (in our state's primary care drought) that a) takes my non-insurance, b) understands about chronic illnesses in general, and mine specifically, c) understands that I need to see specialists pretty often and d) will not put up a fuss about Zach and his experiments, because I am not willing to stop experimenting.
All of which makes me want to spend my time digging out my West Wing DVDs just so I can watch Sam & Toby and Josh and pretend I don't hate the world for a little while.
Oh, and that's not even mentioning the doctor drama, wherein I (yet again) get dumped by my primary care doctor and have to scramble to find a (MassHealth accepting) replacement. (Which I have yet to do: joy of joys!) And how that screws up every single other doctor and specialist I have to see, all because, well - she don't know what to do with me anymore, and she's sick of trying and having more things go wrong? Guess who else feels exactly that same way? But doesn't have the luxury of bailing? This girl, right here! Although her official complaint was that Zack was taking over more and more of my care, and 'he's not in our network, so I don't get his notes right away and that's not a viable way to provide care.' So... because your computers don't speak the same exact language and it takes a couple of weeks for things to get filtered through to you...? Mmhmm: Not Buying It.
I knew it was coming - I am not a debutante dumpee, after all - a few months back when she started talking about how the hospital was consolidating referrals and maybe I'd have to start switching some of my specialists over to new ones. Which would mean finding at least six new specialists and starting from scratch with all of them, ON TOP OF leaving Zach, which I am just unwilling to do, instead of just, say finding a new primary care doc. She was quick to point out that it would be easier on me to find a new PCP, probably, in long run, didn't I think? Well, actually, I think the whole system is beyond asinine, because the person I see the most can't be my 'primary care' and everybody else gets pissy over the fact that I want to see him so often, even though he's the only one who, you know, actually tries to help me by doing things?
As opposed to the lot of you who say things like "It's chronic illness and you'll just have to learn to adapt better" or "If you lose a couple of pounds that might go a long way" (it did not, by the way: I have felt no better at 150 than I did at 200, I was considerable worse at 165 than I was at either of those, so .... shove it?) and "with all these new problems cropping up, it's hard to know where to start with you, so I'm not comfortable doing anything." (Seriously: that last is an exact quote. Too. Many. Things. Don't. Want. To. Help. With. Any. Of. Them. Screw You.)
So, I've got one more appt with her - my soon-to-be ex-PCP - next week, during which she will help with exactly zero things, probably google half of the things I tell her, and randomly search the network for test results that should have been back weeks ago, and then I have to hit the phones again. For the ... third time in under five years? With no guarantees that I can find anybody (in our state's primary care drought) that a) takes my non-insurance, b) understands about chronic illnesses in general, and mine specifically, c) understands that I need to see specialists pretty often and d) will not put up a fuss about Zach and his experiments, because I am not willing to stop experimenting.
All of which makes me want to spend my time digging out my West Wing DVDs just so I can watch Sam & Toby and Josh and pretend I don't hate the world for a little while.
Friday, April 19, 2013
Unthinkable, really, what's been happening here.
Right now the local reporters are droning on as Air Force 1 lands at Logan, in preparation for today's memorial service. The news has not stopped since Monday, although I've done my best to drown it out: having Lil Girl over during her school vacation is a good distraction, and a good excuse to keep the tv off, but you still hear things: Rumors of arrests creep in when I check Facebook while she's playing Barbies in the other room; sirens go flying by in flocks, screaming that something is happening, but I don't want to know what; Dad calls from the airport with news of yet another lockdown due to suspicious packages.
Every local channel has it's own somber music, it's own strained, sad-faced, semi-stoked reporters, it's own repetitive non-informative crawl, blasting basically the same news since Monday at 2:50. They've all talked almost non-stop now for three days, showing the same, once shocking footage of blasts one and two, the helpers rushing in, the clouds of debris billowing out. We've heard - live - from every doctor about every non-specific patient and their horrific surgeries, their instant amputations, their 'luck' in that the on-site medical tent was so close, so that their injuries could be tended to so quickly. Reporters shout their non-sensical questions at these doctors at press conferences designed to comfort? us, I suppose, but that just end up making me feel more intrusive, more nauseous as I think about all these patients - all these people - have ahead of them now.
I don't really live in Boston - but I've lived in Boston adjacent cities my entire life: Cambridge, Somerville, Revere... basically moving around the Hub counter-clockwise since I was born. It's a beautiful city, with neighborhoods full of cobblestone streets and side-walks that the wheelchair user in me hates and the history buff in me admires; where a truck will double-park in the middle of a North End street to make deliveries, not caring that it completely shuts down the traffic, since there is only one lane possible in the narrow, non-sensical street; where I've never even made it to half the cultural offerings the city offers, but it's comforting just knowing that I could. It's not technically my home, but I claim it as mine - it's more than just knowing where the closest 5 Dunkin Donuts are, or that we don't really ever call it the 'subway', but that's part of it.
Boston isn't just a city, it's an attitude. Massholes are proud of being Massholes - we're a cynical, sarcastic lot, sure, but - as you've probably seen this week - tenderhearted too - Wicked isn't just our favorite adjective, it's how we self-identify. We think our sports teams are the best - even if we don't care about sports at all. We know our traffic is the worst - and laugh when other people complain about theirs. We know our hospitals rock - I think of all the doctors I see on a regular (weekly/monthly/all the damn time) basis, and all the hospitals I've been in that were just on the news this week. And how I know those emergency rooms, and the nurses who patrol the halls there, and how I hope they are doing alright. - And we know that being a center of learning - with a college on ever corner and a university everywhere you turn, brings optimism and hope and energy and enthusiasm into our cold, snowy hearts - even if it also brings pedestrians who think they are immune to getting hit by cars. It's a place that digs its roots into you, is all I can say.
I feel almost everything right now; so close to an edge that just appeared, and all of us are tiptoeing around it, trying to avoid falling in, because we won't know how to climb out.
I hold my breath watching live tv now - I guess I've been doing it for months, but I really just noticed how bad it is this week, with everything being live all the time. I have a distinct need for what's on to be over all ready, to know that it's ended with everyone safe and sound, to know I'm not going to be a witness to history again, today. Because I don't think I have it in me to witness much more.
And I'm so far removed from these things - luckily, none in my family has been harmed - although my brother was hoofing back to his car from the Sox game and heard the explosions on Monday, sent me bewildered texts as he got into his car and drove out as all the emergency vehicles swarmed in -; I'm certainly pretty safe from any terrorists here in my bed, I would think: But just the idea of One. More. Thing. Going. Wrong. Of Texas, and now shootouts & 'controlled explosions' on city streets; of a minor fender bender in front of my house (again) and the power going out, just when the city tells everybody to stay in in order to stay safe.
I know my armor is so thin in places that the slightest poke may cause me to deflate, implode, explode - I don't even know what. So I huddle, and I hide from the news (as much as possible, which is, in all actuality, very little), and I hope that there's nothing else, just for right now, just for this minute.
I want to hug everyone: people I know, people I've never met, everybody on the news who's as close to tears as I am and yet manages to tell their story. I want to build a fort, a cave, a bunker and have it swallow up all the people I love, so that I can know they are safe and close, and within reach at all times. Only my mom's insistence that it was not an option kept me from posting our couch on the #bostonhelpers website for somebody who needed it the other night - and that was just because we were supposed to have the kids and would be full up, no-room-at-our-inn.
In one of the ever-replaying scenes of the first bomb exploding that they keep playing on Channel 4, you can see, in front of the huge puff of smoke and dirt and debris that rises up in the aftermath of the bomb, a balloon caught up in the gust of it all. It gets swept along the edges of the cloud, higher and higher, over and over again. On Monday, if I could have, I would've rolled my way to Copley Square, to the Finish Line I've never seen in person before (nor had any interest in finding), and searched for the hand that had held that balloon's string.
It was all I could think of, once I saw it. Just that yellowish clump of balloons, floating up and up, again and again, following the blast. And knowing that somewhere below, in the chaos of fences and flags and blood and fear, there had been a child who'd been cheerfully tugging that balloon along behind him/her.
And now we know some names - of the three who didn't make it and the nearly 200 that were injured, but made it - and we know that they have long roads ahead of them, those that came through. Those that helped, those that saw, those that ran, those that heard: there's a lot that's different, all of the sudden, and that's pretty damn scary.
The flurry of text messages and emails and twitter feeds and facebook refreshing that happened immediately after the news broke, just so I could know as many of my people were as safe as they could be - and now today (because this post has taken me days to write) all over again, with whole cities on lockdown, and gunshots and suspects being killed and others being tracked and interviews of kids who, once upon a time, went to the same charter school with the one who's still running, but they don't know anything about the 'man' he is now, or how this could have happened. So back to all the social networks to make sure everyone is "safe" and hoping that soon 'safe' will be a word that means something again.
It's not a new world, really: it's just a new city. A new place for an old terror, and this time, it's my place. Our place. The idea that my doctor's appointment on Monday might be cancelled because they're rescheduling things due to today's city-wide lockdown? What is that, even? Who makes sense of that? I think about taking my niece on her first trip to the Swan Boats this summer, which is something I promised to do, even though I get sea sick looking at pictures of boats, and the idea that being out in the Common might not be safe? Does not compute.
It doesn't make sense, it's not going to make sense, and even when this is over, it won't be over. We know it. And we'll live with that. But I sure wish it was still Sunday, when my only thought about the marathon was that it would preempt all the shows the next day. I'm not sure this post makes as much sense as I would like it to, but I need to say something, if only to get it all out of my head.
I hope you are all safe, where you are, and that you stay that way.
Tuesday, March 12, 2013
so here i am
how I've been feeling lately: like pond scum. like a junkie, only I don't know what I need a fix of. like a crumpled up wrapper that someone tossed at the barrel, missed and now just keeps getting trod on underfoot, because everybody is too lazy to bend over and pick it up.
so, in general: just awesome.
according to my med tracker -into which I input my symptoms, vital signs, pain map, mood, meds, etc, daily - I'm doing just fine. I guess that goes to show you that there are limits to what computers can do.
It can't, for example, extrapolate from the fact that my pain levels have been at a consistent 8-10 level for the past....year, that my pain is, in fact, out of freaking control. (In fact it reports I have been "stable," which makes me want to strangle it, but it is but a website and has no neck to strangle.)
It can't use the data from my latest migraine - pain level: 9, days lasting (so far): three, meds taken to control it: at least 4, ability to move or live a life that requires doing more than rolling over in bed or taking the hottest shower possible; nil - to confirm that I have become some sort of cave troll, who lives in a twilight world where lights can't be brighter than twinkle lights, movements must all be made in slow motion, and noises can't be above a whisper.
It can take my three month mood average of 'okay' and filter it down into 36 days with at least one episode of tears; 5 days of actual, recorded laughter; at least two days when I felt like talking to people was as painful as pouring acid on myself; but it doesn't seem to register that my definition of an 'okay' mood is seriously lax, because I would've included most of those days in the roster. Or that my much lauded patience is at an all time premium - I have no time for nonsense (or only time for nonsense, I guess) - it depends on who you are and what you want, but if it's stupid, I'm outta there, because ain't nobody got time for that.
It can tell you that my blood sugar's been bloody high - a fact probably influenced by my inability to eat anything that doesn't come in the form of a cookie, potato or cupcake without wanting to throw it back up again. (Don't ask me: carbs are comfort food.) And even then, it's dicey.
It can tell you that my blood pressure's been kooky - per usual, of course - but my pulse has started to join in and beat a crazy rhythm whenever it feels like it. and sometimes I feel like it might just beat right out of my chest, as if it were a separate thing, growing inside of me, its own necessary beat that I cannot control.
Today's a tough day: I know it, as much as I know that these past six months have been hard months, and that - eventually - days won't be so hard, and months will pass without me taking such extreme note of them.
But right now, fighting this maximum migraine and the melancholy mood it has brought with it, everything seems like forever.
As if I am always just those numbers on the stupid chart, and nobody can see past them.
As if I don't remember that there's more to me than those stupid numbers, most of the time. As if that's what I boil down to, in the end. And what a sad end that would be - abnormal numbers and not a lot else.
All I want is to feel better, and I know that part of that is in my power, that there are things I need to do to make myself feel better, (less carbs, for example) but, when you keep trying and you wind up in the same position over and over and over again - and that position is basically curled in a ball on your bed, wishing there was something you could take that would MAKE IT STOP, just for a little while - it's fucking frustrating, is what it is.
I'm working toward my 19th year of chronic illness, and sometimes I feel like I have Got This Shit Down. I know it backwards and forwards and inside out. I can talk to anybody about conserving spoons and living with the ifs/whens and how to fire the doctors that make you feel like garbage and why you should put your pills in those little day packets and why abelism is a bunch of bullshit & you don't have to put up with it, and so, so many other, important, wonderful things. And I'm proud of all of that.
But there are days like today, when it feels as if I have learned nothing, where if feels like I've spent 19 years banging my head against the same fucking wall, and only wound up with a cracked skull for my troubles.
And I just want a break, just want a few days where I can breathe easily, and not worry about what I'll smell and how sick it'll make me. Where I can move without immediately regretting it or hiding how much it hurts. Where I can sleep and wake up rested; feel hunger, eat and then feel full; sit around for hours with people I love and not have to worry about where to plug in the heating pad, or whether or not I should take the next pill if I want to stay put.
It's little things and big things, and today they all feel like big things.
Most of that stuff doesn't matter to me, on an ordinary day, but I guess that's the patience thing again - the person I have the least amount of patience for is myself.
But I know this will pass, so I'm going back to my dark-ish room (even on it's dimmest setting, the laptop is too bright at night), and the soothing voice of Jim Dale as he & I re-traipse the grounds of Hogwarts with our favorite magical trio.
Here's hoping for better days ahead.
so, in general: just awesome.
according to my med tracker -into which I input my symptoms, vital signs, pain map, mood, meds, etc, daily - I'm doing just fine. I guess that goes to show you that there are limits to what computers can do.
It can't, for example, extrapolate from the fact that my pain levels have been at a consistent 8-10 level for the past....year, that my pain is, in fact, out of freaking control. (In fact it reports I have been "stable," which makes me want to strangle it, but it is but a website and has no neck to strangle.)
It can't use the data from my latest migraine - pain level: 9, days lasting (so far): three, meds taken to control it: at least 4, ability to move or live a life that requires doing more than rolling over in bed or taking the hottest shower possible; nil - to confirm that I have become some sort of cave troll, who lives in a twilight world where lights can't be brighter than twinkle lights, movements must all be made in slow motion, and noises can't be above a whisper.
It can take my three month mood average of 'okay' and filter it down into 36 days with at least one episode of tears; 5 days of actual, recorded laughter; at least two days when I felt like talking to people was as painful as pouring acid on myself; but it doesn't seem to register that my definition of an 'okay' mood is seriously lax, because I would've included most of those days in the roster. Or that my much lauded patience is at an all time premium - I have no time for nonsense (or only time for nonsense, I guess) - it depends on who you are and what you want, but if it's stupid, I'm outta there, because ain't nobody got time for that.
It can tell you that my blood sugar's been bloody high - a fact probably influenced by my inability to eat anything that doesn't come in the form of a cookie, potato or cupcake without wanting to throw it back up again. (Don't ask me: carbs are comfort food.) And even then, it's dicey.
It can tell you that my blood pressure's been kooky - per usual, of course - but my pulse has started to join in and beat a crazy rhythm whenever it feels like it. and sometimes I feel like it might just beat right out of my chest, as if it were a separate thing, growing inside of me, its own necessary beat that I cannot control.
Today's a tough day: I know it, as much as I know that these past six months have been hard months, and that - eventually - days won't be so hard, and months will pass without me taking such extreme note of them.
But right now, fighting this maximum migraine and the melancholy mood it has brought with it, everything seems like forever.
As if I am always just those numbers on the stupid chart, and nobody can see past them.
As if I don't remember that there's more to me than those stupid numbers, most of the time. As if that's what I boil down to, in the end. And what a sad end that would be - abnormal numbers and not a lot else.
All I want is to feel better, and I know that part of that is in my power, that there are things I need to do to make myself feel better, (less carbs, for example) but, when you keep trying and you wind up in the same position over and over and over again - and that position is basically curled in a ball on your bed, wishing there was something you could take that would MAKE IT STOP, just for a little while - it's fucking frustrating, is what it is.
I'm working toward my 19th year of chronic illness, and sometimes I feel like I have Got This Shit Down. I know it backwards and forwards and inside out. I can talk to anybody about conserving spoons and living with the ifs/whens and how to fire the doctors that make you feel like garbage and why you should put your pills in those little day packets and why abelism is a bunch of bullshit & you don't have to put up with it, and so, so many other, important, wonderful things. And I'm proud of all of that.
But there are days like today, when it feels as if I have learned nothing, where if feels like I've spent 19 years banging my head against the same fucking wall, and only wound up with a cracked skull for my troubles.
And I just want a break, just want a few days where I can breathe easily, and not worry about what I'll smell and how sick it'll make me. Where I can move without immediately regretting it or hiding how much it hurts. Where I can sleep and wake up rested; feel hunger, eat and then feel full; sit around for hours with people I love and not have to worry about where to plug in the heating pad, or whether or not I should take the next pill if I want to stay put.
It's little things and big things, and today they all feel like big things.
Most of that stuff doesn't matter to me, on an ordinary day, but I guess that's the patience thing again - the person I have the least amount of patience for is myself.
But I know this will pass, so I'm going back to my dark-ish room (even on it's dimmest setting, the laptop is too bright at night), and the soothing voice of Jim Dale as he & I re-traipse the grounds of Hogwarts with our favorite magical trio.
Here's hoping for better days ahead.
Wednesday, February 13, 2013
Letting Other People Tell You Where I Am
“I want to think again of dangerous and noble things. I want to be light and frolicsome. I want to be improbable and beautiful and afraid of nothing as though I had wings.”- Mary Oliver
“Life’s challenges are not supposed to paralyze you, they’re supposed to help you discover who you are.” - Bernice Johnson Reagon
“I want so much that is not here and do not know where to go.” - Charles Bukowski
“There is no coming to consciousness without pain. People will do anything, no matter how absurd, in order to avoid facing their own soul. One does not become enlightened by imagining figures of light, but by making the darkness conscious.” Carl Jung
“It’s okay to feel the way you feel. You can feel angry. You can feel afraid. You can feel crushingly disappointed. You can feel bitter. AND you can feel the love.” Pace, 12-12
Mostly, I've been feeling the darkness, doing everything I can to avoid feeling the darkness (including some new obsessions which I will be back to share with you soon), and facing a whole bunch of things I'd really rather not face - about myself, my situation, and my future. It's "figuring some shit out" time, I guess, and so far, I don't much like the stuff I'm coming up with. I'm also having a super low-spoon issue - which is not news, but is particularly frustrating, because I'm used to having a set number of spoons - small but reliable - and without even those few spoons, I'm continuously frustrated with myself & my inability to get things accomplished most days. I don't know if it's new meds (I think it might be), but I do not like it. And coming at an emotionally taxing time, as well, that's not helpful.
But I haven't been completely silent. I managed to post over at The Band (the completely awesome, supportive Band Back Together) about one of my worst fears, one of the things that's most terrifying to me right this minute. I've been active on Twitter for a bit, c'mon over and chit chat with me in 140 characters if that's your thing. And I'm coming back here, because, as always, not saying things is hurting too much. So, I'm here: trying to feel the love, and hoping y'all are feeling it too. :)
Saturday, October 13, 2012
Blueberry Pie & Twizzlers aren't much of a housewarming present, but it's all I"ve got
My sister and brother-in-law are moving out today, and I am not ok
with that. We've lived apart before and would have to again eventually,
at some point anyways, so it's not that so much as how and when it's
happening that is so heartbreaking. It is, in all actuality, going to
turn out to be a positive thing for her, for them: it's a thousand
percent in their favor that they would move out of some place that is
unhealthy & stressful for them, especially at time where they need
things to be as stress free as possible. I'm three thousand percent
behind them, and will continue to try to find ways to make things as
stress-free as I can, even if it means hounding my B-I-L for updates bc I
know my sister doesn't like to be pestered (He doesn't mind).
The problem is that I just can't seem to get past the fact that it's so stressful and unhealthy for them (and me) for No. Damn. Reason. Except that people feel like being assholes. Well, one person in particular, really. Who is so busy playing the victim in his own mind that he can't seem to grasp the fact that hurting other people is the reason no one wants to talk to him. Because he's "being nice now." Like any of us trust that.
-----------
I have avoided talking to the two sisters who grew up with our parents but don't live here, mostly because, since they don't live here, I usually have to hear about a thousand excuses from them about how his behavior isn't really that bad and I should have some compassion for him. And it's not even that I don't have compassion for him: it's that he's trampled it all, as well as pretty much every other feeling I have for him, consistently over a long period of time.
The sisters who don't live here seem to forget a) how much they both hated living here when they did - so much so that one left for 'vacation' full well knowing she wasn't coming back but kept it a secret till she was there so she wouldn't have to tell him in person, and the other moved out as soon as she could manage it. Three times; and b) exactly how he behaves when you are in his life on a regular basis. I suppose if you only have to see him at birthdays, barbecues and/or holidays, or listen to him complain that you never call him anymore once every 5 months or so, then he'd be a lot easier to take. I don't doubt that that is true; I hope it proves true - for his sake as much as mine and SisterJ's.
It's my opinion that he just can't give up feeling like he's supposed to be the boss, even though we're grown adults (not to mention that he wasn't really the boss in our family, he just thought he was because he was stricter). And since he can't be the boss in the way that he thinks he should be - i.e. being able to dictate your 'attitude' or demand the respect he thinks he is 'owed' - he tries to bully people instead.
And, for a long time, we've let him.
That isn't to say one or the other of us - or a group of us - haven't stood up for ourselves at different points, or demanded changes in our relationships... it's just that when you stop being vigilant about your boundaries, certain people (maybe all people? I don't really know) will notice that you're no longer guarding things that 'do not cross' lines as closely as you once were and will begin to inch their way back over again.
And I can't keep letting that happen.
So we've got to figure out a different way to interact with each other, and two things will need to happen (from my perspective) before I could even attempt that. First, he'd have to take real responsibility for his actions - meaning he has to stop thinking it's ok, just because he's stressed out at work, or with other people, to take that out on somebody and start to make changes in his own behavior. And second, I'd have to figure out how to let go of some of my own anger and figure out how change my behavior so that he can't cross those boundaries anymore: to just accept the fact that he doesn't have to be happy about it, I'm going to do what I need to do regardless. (This is more difficult than you'd imagine when you live in his house. And are financially dependent upon him.)
And since I can't make him do the things I think he needs to do, I'm focusing on that second part there. I'm definitely not on-board with forgiving, just yet. Don't know when I could possibly get on-board with that. But trying to figure out how I can live away from here, how I can turn myself into one of the sisters who just sees him every couple of months and deals with that in a more healthy manner? That's what I'm trying to work on right now.
And I know, eventually, it'll be what SisterJ works herself around to, too. She's too big-hearted (even though she'd like to say she's heartless) to not want to figure it out: that's why she's so hurt right now, because she didn't do anything to screw it up in the first place, but it still blew up in her face. So, yeah, I know her leaving is a good thing.
A necessary thing.
And, like I said, in the long run, I have no doubt they'll be much happier there... it's just I don't want to be so far away from her when I know she needs me, and it's not as easy for me as it is for other people to just 'pop' in on her at her new place. (Obstacles, oh how I hate your ever living guts. Chronic Illness-related Obstacles: goes double for you.)
But it sucks donkey balls, and I can't help being pissed off at him for it. He's just going to have to get over that.
The problem is that I just can't seem to get past the fact that it's so stressful and unhealthy for them (and me) for No. Damn. Reason. Except that people feel like being assholes. Well, one person in particular, really. Who is so busy playing the victim in his own mind that he can't seem to grasp the fact that hurting other people is the reason no one wants to talk to him. Because he's "being nice now." Like any of us trust that.
-----------
I have avoided talking to the two sisters who grew up with our parents but don't live here, mostly because, since they don't live here, I usually have to hear about a thousand excuses from them about how his behavior isn't really that bad and I should have some compassion for him. And it's not even that I don't have compassion for him: it's that he's trampled it all, as well as pretty much every other feeling I have for him, consistently over a long period of time.
The sisters who don't live here seem to forget a) how much they both hated living here when they did - so much so that one left for 'vacation' full well knowing she wasn't coming back but kept it a secret till she was there so she wouldn't have to tell him in person, and the other moved out as soon as she could manage it. Three times; and b) exactly how he behaves when you are in his life on a regular basis. I suppose if you only have to see him at birthdays, barbecues and/or holidays, or listen to him complain that you never call him anymore once every 5 months or so, then he'd be a lot easier to take. I don't doubt that that is true; I hope it proves true - for his sake as much as mine and SisterJ's.
It's my opinion that he just can't give up feeling like he's supposed to be the boss, even though we're grown adults (not to mention that he wasn't really the boss in our family, he just thought he was because he was stricter). And since he can't be the boss in the way that he thinks he should be - i.e. being able to dictate your 'attitude' or demand the respect he thinks he is 'owed' - he tries to bully people instead.
And, for a long time, we've let him.
That isn't to say one or the other of us - or a group of us - haven't stood up for ourselves at different points, or demanded changes in our relationships... it's just that when you stop being vigilant about your boundaries, certain people (maybe all people? I don't really know) will notice that you're no longer guarding things that 'do not cross' lines as closely as you once were and will begin to inch their way back over again.
And I can't keep letting that happen.
So we've got to figure out a different way to interact with each other, and two things will need to happen (from my perspective) before I could even attempt that. First, he'd have to take real responsibility for his actions - meaning he has to stop thinking it's ok, just because he's stressed out at work, or with other people, to take that out on somebody and start to make changes in his own behavior. And second, I'd have to figure out how to let go of some of my own anger and figure out how change my behavior so that he can't cross those boundaries anymore: to just accept the fact that he doesn't have to be happy about it, I'm going to do what I need to do regardless. (This is more difficult than you'd imagine when you live in his house. And are financially dependent upon him.)
And since I can't make him do the things I think he needs to do, I'm focusing on that second part there. I'm definitely not on-board with forgiving, just yet. Don't know when I could possibly get on-board with that. But trying to figure out how I can live away from here, how I can turn myself into one of the sisters who just sees him every couple of months and deals with that in a more healthy manner? That's what I'm trying to work on right now.
And I know, eventually, it'll be what SisterJ works herself around to, too. She's too big-hearted (even though she'd like to say she's heartless) to not want to figure it out: that's why she's so hurt right now, because she didn't do anything to screw it up in the first place, but it still blew up in her face. So, yeah, I know her leaving is a good thing.
A necessary thing.
And, like I said, in the long run, I have no doubt they'll be much happier there... it's just I don't want to be so far away from her when I know she needs me, and it's not as easy for me as it is for other people to just 'pop' in on her at her new place. (Obstacles, oh how I hate your ever living guts. Chronic Illness-related Obstacles: goes double for you.)
But it sucks donkey balls, and I can't help being pissed off at him for it. He's just going to have to get over that.
Thursday, September 06, 2012
I would be a horrible circus performer (although I am quite flexible)
I didn't realize that my being here would change so many things: I mean, when I first wormed my way into an invitation to stay on the couch, I obviously didn't realize that nearly five months later I'd still be here, unshowered and mid-flare, keeping constant watch on a woman so close to death. I signed up for that, for the most part, because I had to: nobody seems to get that, really, that I feel compelled to be here, not just because I am capable of it (and, honestly, physically? I'm not capable, I'm just faking it the best I can), but because it's where I need to be. I suppose I could have made a different choice, but every other option just felt worse than this one, so here I remain, camped out on a couch with a (probably permanent) me-shaped dent in it, edging the furniture over until it gives me just the right view of her on her sickbed.
While I could not have predicted the ways that being here has altered my relationship with Grandmother - both negatively (particularly through her attacks during her dementia rants or just witnessing little character flaws that she'd previously kept hidden from me) and positively (there have been moments of extreme joy for both of us) - I'm more surprised by how being here has effected my relationships with the rest of my family, the rest of the world.
Example: I've got an aunt who lives less than an hour away, and who I generally have a good opinion of. But her lack of visits (once every three weeks, maybe) and phone calls (I know Uncle Jack is a bear on the phone, but suck it up), especially since her mother's latest downturn in health bother me. What could be more important than this? What enables you to go sit at a racetrack all day on your day off, as opposed to sitting by your mother's side? Granted, Grandmother would probably have no clue who you are, and granted you have a right to your life outside of the fact that your mother is dying, but ... it still bothers me, and I know it's put space between us.
I try not to let it hurt me that people haven't come to see her, but sometimes I resent it a whole damn lot. Cousins who send me messages about how much they care, but don't show up on the doorstep with a screwdriver and a willing hand when it's needed. I'm conflicted about it because it seems wrong and hurtful and false, but also because.... I totally get it.
I keep hearing "I don't want to see her like that" or "I don't think I could handle it if she looked at me and didn't remember me", and I understand that desire so much. I guess I'm jealous that they feel like they have the option to not come, whereas I feel like there's no choices to be made - she needs me, so I am here, even though it is one of the hardest things I will ever do. To have her look at me, with that blank stare, or worse her evil stare, when she's pissed off about something, is an experience I would love to have opted out of; it's something I wish I could forget, and something which, no matter how many times I remind myself that it's not her but the dementia that's driving it, I know has put smudges on our relationship. Deep, dark smudges I would give anything to erase.
So I understand the sentiment, and I understand not being able to face what's going on here - but I'm still disappointed that so few people have turned up, that so many of us are able to just send their warm wishes, but not put any actual effort into it. I'm jealous that they can do that, I'm confused at how they do that, and I am surprisingly more than a little hurt by how many of them can do it. I think that's part of it: that I used to be so firmly a part of the "us" of cousins, and now I feel like there's this line, a "me" and a "them", because I've done this and been here, and none of them can truly understand. They write their e-mails about how strong she is, and how much she's been through, but they don't know the half of it. They say how they hope the end comes quickly and how she doesn't suffer, and I stuff the words back into my mouth: 'She's already suffering, she's been suffering for months, maybe years, and none of you have noticed!'
It's not fair of me to think those things: I know that they are all doing what they can, and that they all do really love her: it's just that right now - living through the worry of each and every breath, each consistently lower pulse reading and oxygen level, each english muffin I put in front of her that she doesn't eat, each 4 hour battle to get her to use the Depends because she's not strong enough to get out of bed - right now, everything they say seems like a platitude, a cliche, as disconnected from her and me and our actual situation as if they were talking about how many sheep there were at this year's state fair.
It's just another barrier between me and the people I love, and it somehow grew while I wasn't looking.
Which is another thing: I've been nearly myopically focused on our situation here. I think that's understandable: death trumps pretty much everything. But there's a lot of other things going on - a lot of other things - and I'm barely on the periphery of stuff that I normally would wade right into. People are worried about losing their jobs, having their first panic attack, looking for new places to live, buying cars, getting fired, losing weight, gaining weight, dealing with depression, having birthdays, trying to embrace happiness after hardship, going back to school, moving across the country, ending longterm relationships, starting new relationships. Two of my sisters have changed life directions and are actively trying to conceive - or are moving down the path towards having children.
Two of my younger sisters. Are trying to have babies right now. Which is so exciting and awesome and terrifying, and also like an arrow straight into my chest. Because there's that baby thing again, which I have been actively avoiding (with little luck) and just do not have the mental energy to deal with right now, but there it is, everywhere I look. College Roommate/Best Friend had her third baby yesterday, after a difficult pregnancy. One of the (young stupid intern) doctors who saw her in the Emergency Room wrote the words 'advanced maternal age' on her chart. We are the same age, and while I know that 33 is not technically considered advanced maternal age, I know it's also not considered to be a time when you've got plenty of fertile years ahead of you. So there are all my own issues with TTC, and then there's all of their issues with TTC (which are varied and complicated, as they seemingly always are) and how best to support them (because I do want to support them) through their own insecurities and doubts and troubles. And how to do that effectively with the 5% of my brain that isn't focused on Grandmother and her medication schedules, stuck here in my little corner of the living room couch, while at the same time not letting the fact that I am not actively TTC be a gaping wound that grows between us.
Life is going on all around me - everywhere but in this house, in this time, in this space that I can't leave - and I don't know how to participate in any of it. Everything else seems unreal to me, everything beyond this door, everything outside the range of the Darth Vadar sounds coming out of her oxygen machine seems as if it's happening to somebody else, like I'm watching it on television, maybe. And it's interesting, and it's something I want to be involved with, but my brain just can't seem to make the leap from Here (and all that implies) to There (and all that implies).
There's a big gulf between me and the rest of the world - the part of the world that isn't changing their grandmother's diaper (and sheets - why don't those goddamn Depends do what they're supposed to do more than 1/4 of the time?) at three in the morning, or watching an old woman's chest to make sure it's still rising and falling - and I don't know how to bridge it. Phone calls and text messages seem like communiques from far off lands - someone shows me a picture of a fancy new car, someone else just says hello, there's a Facebook message from a far-away cousin, a phone call from someone I didn't even know had my number - I want to grab onto those things as if they were life preservers, use them to help keep me afloat when I feel like there's so much here that it will drag me under. And I can't decide if this is the Real World, or that is (even though I know they both are): I just know that they don't seem to exist within the same atmosphere, in the same time zones, on the same planet.
This disconnection is even harder when I do get a break, when I'm sitting face to face with someone, and there's all these awkward pauses, all these spaces and cracks in our conversation that there never used to be. I feel like I am rusty at speaking to people, even those I talk to everyday: It's as if my conversational skills have deserted me in favor of the ability to withstand the tears of a ninety-five year old woman when you tell her she can no longer walk - and there's no ease to any of my relationships right now, no settled in feeling of comfort and compatablitly, even with those that I am the closest.
Example: Mum will come over to help - most days she comes over to help - and make a misstep in her delivery - do something that pisses off Uncle Jack (which isn't hard) or say something to Grandmother that confuses her and sets off the panic train (which also isn't hard) and instead of relieved, I wind up feeling exhausted to be dealing with that, that now I not only have to deal with the repercussions of her visit, but also have to somehow not hurt her feelings while I'm repairing the damage she did by trying to help. It's often awkward and uncomfortable (mostly because Uncle Jack is a stubborn ass sometimes and he's so set in his ways that even people doing nice things - like bringing over a boatload of food for us to eat - can make him angry) and I find myself having to hold back how upset I am by it in order to smooth it over on both sides, wishing the whole time that I didn't have to play referree to supposed grown-ups, that it would be nice if, once in a while, I could get some actual HELP, that was just help - no strings, no messes to clean up afterwards, no complications - just simple help.
Most of the times I can't get up the energy to feel anything besides terrified that I am going to do something wrong here, that the last memory Grandmother will have is of a frustrated woman struggling not to yell at her to 'just pee already, goddamn it!' instead of a peaceful, loving face. And I want that for her - for her to go knowing that We All love her so much, knowing that she has so many people praying* for her and thinking of her - and I'm horrified that I might not be able to provide it.
*That's a whole 'nother area where my conflicted feelings are doing battle: she's very religious so we've had a bunch of priests come by, and she's had the last rites more than once, but I also think if the hospice people tell me that "all we can do now is pray" one more time I might punch them in the throat.
When I do get beyond that feeling, I feel guilty for wishing this were over, guilty for seeing each peak and valley as just another obstacle for us to overcome -It's especially hard to know that when she does have a 'good day' or make a small improvement, instead of rejoicing for her that she's able to eat a half a turkey sandwich, there's a part of me that wishes it wasn't happening, because it's only prolonging something that is already so difficult for all of us.
I feel guilty for that, for wishing that there would just be an end to things, knowing what that means in reality.
I feel guilty for being here, when I'm needed elsewhere. For missing out on the summer adventures the kids and I had planned, for all the hand holding I haven't been around to provide, the two a.m. phone calls I couldn't answer. I know the world doesn't revolve around me - that me not being at the house for sleepovers, for example, wasn't the end of the world or a crisis for the kids - but that's a two sided-coin: I'm glad that my absence didn't wreck everything for everybody, but at the same time I'm hurt by how (seemingly) easily I was removed. Because it feels like I'm the only one who's upset by my missing out on other things - everybody else just goes about their days and sometimes remembers that, in the ordinary scheme of things, I'd probably be involved in this particular activity too, but it doesn't do more than blip on their radar before they're off for other things.
And how selfish of me is it to admit that that hurts? That not being needed or missed in those other situations is hurting me as much as the fact that I'm missing them in the first place? I obviously want it all at the same time - people who love and miss me, but make do when I'm not there; being needed and valued for what I feel I contribute, but being able to not contribute those things for a while and still be loved and valued.
Basically, my brain is a big toxic mess right now, and I've got it all as far down as I can get it - so that it's simmering somewhere in the background for now, because I have only enough energy (and barely that) to make it through each day here, and the rest of that shit is going to have to wait its turn. And there's a very large part of me that is anxious about what will happen when I'm done focusing on the immediate crisis - how I'm going to pick up all those simmering, boiling pieces of myself and glue them back together into something that resembles a human being - but for now, all I can focus on is converting Mgs to Mls (which is stupid: doctors should write the Rx in the dosage of those little droppers and not expect me to do math every time I've got to give her meds in the middle of the night) or if the sheets are too tight around her feet and could be causing bedsores. I know that the end of that type of worry is fast approaching, and I see the train full of other worries barrelling down the track towards me (and know that it will be loaded with all of the things I'm talking about here PLUS a huge drowning dollop of grief once she passes), but I can't even pretend to deal with it yet.
I'm just going to sit here and breathe, and hope that I'm doing what I can, and that any of the balls I'm not actively juggling will not be too damaged when I get around to picking them up.
While I could not have predicted the ways that being here has altered my relationship with Grandmother - both negatively (particularly through her attacks during her dementia rants or just witnessing little character flaws that she'd previously kept hidden from me) and positively (there have been moments of extreme joy for both of us) - I'm more surprised by how being here has effected my relationships with the rest of my family, the rest of the world.
Example: I've got an aunt who lives less than an hour away, and who I generally have a good opinion of. But her lack of visits (once every three weeks, maybe) and phone calls (I know Uncle Jack is a bear on the phone, but suck it up), especially since her mother's latest downturn in health bother me. What could be more important than this? What enables you to go sit at a racetrack all day on your day off, as opposed to sitting by your mother's side? Granted, Grandmother would probably have no clue who you are, and granted you have a right to your life outside of the fact that your mother is dying, but ... it still bothers me, and I know it's put space between us.
I try not to let it hurt me that people haven't come to see her, but sometimes I resent it a whole damn lot. Cousins who send me messages about how much they care, but don't show up on the doorstep with a screwdriver and a willing hand when it's needed. I'm conflicted about it because it seems wrong and hurtful and false, but also because.... I totally get it.
I keep hearing "I don't want to see her like that" or "I don't think I could handle it if she looked at me and didn't remember me", and I understand that desire so much. I guess I'm jealous that they feel like they have the option to not come, whereas I feel like there's no choices to be made - she needs me, so I am here, even though it is one of the hardest things I will ever do. To have her look at me, with that blank stare, or worse her evil stare, when she's pissed off about something, is an experience I would love to have opted out of; it's something I wish I could forget, and something which, no matter how many times I remind myself that it's not her but the dementia that's driving it, I know has put smudges on our relationship. Deep, dark smudges I would give anything to erase.
So I understand the sentiment, and I understand not being able to face what's going on here - but I'm still disappointed that so few people have turned up, that so many of us are able to just send their warm wishes, but not put any actual effort into it. I'm jealous that they can do that, I'm confused at how they do that, and I am surprisingly more than a little hurt by how many of them can do it. I think that's part of it: that I used to be so firmly a part of the "us" of cousins, and now I feel like there's this line, a "me" and a "them", because I've done this and been here, and none of them can truly understand. They write their e-mails about how strong she is, and how much she's been through, but they don't know the half of it. They say how they hope the end comes quickly and how she doesn't suffer, and I stuff the words back into my mouth: 'She's already suffering, she's been suffering for months, maybe years, and none of you have noticed!'
It's not fair of me to think those things: I know that they are all doing what they can, and that they all do really love her: it's just that right now - living through the worry of each and every breath, each consistently lower pulse reading and oxygen level, each english muffin I put in front of her that she doesn't eat, each 4 hour battle to get her to use the Depends because she's not strong enough to get out of bed - right now, everything they say seems like a platitude, a cliche, as disconnected from her and me and our actual situation as if they were talking about how many sheep there were at this year's state fair.
It's just another barrier between me and the people I love, and it somehow grew while I wasn't looking.
Which is another thing: I've been nearly myopically focused on our situation here. I think that's understandable: death trumps pretty much everything. But there's a lot of other things going on - a lot of other things - and I'm barely on the periphery of stuff that I normally would wade right into. People are worried about losing their jobs, having their first panic attack, looking for new places to live, buying cars, getting fired, losing weight, gaining weight, dealing with depression, having birthdays, trying to embrace happiness after hardship, going back to school, moving across the country, ending longterm relationships, starting new relationships. Two of my sisters have changed life directions and are actively trying to conceive - or are moving down the path towards having children.
Two of my younger sisters. Are trying to have babies right now. Which is so exciting and awesome and terrifying, and also like an arrow straight into my chest. Because there's that baby thing again, which I have been actively avoiding (with little luck) and just do not have the mental energy to deal with right now, but there it is, everywhere I look. College Roommate/Best Friend had her third baby yesterday, after a difficult pregnancy. One of the (young stupid intern) doctors who saw her in the Emergency Room wrote the words 'advanced maternal age' on her chart. We are the same age, and while I know that 33 is not technically considered advanced maternal age, I know it's also not considered to be a time when you've got plenty of fertile years ahead of you. So there are all my own issues with TTC, and then there's all of their issues with TTC (which are varied and complicated, as they seemingly always are) and how best to support them (because I do want to support them) through their own insecurities and doubts and troubles. And how to do that effectively with the 5% of my brain that isn't focused on Grandmother and her medication schedules, stuck here in my little corner of the living room couch, while at the same time not letting the fact that I am not actively TTC be a gaping wound that grows between us.
Life is going on all around me - everywhere but in this house, in this time, in this space that I can't leave - and I don't know how to participate in any of it. Everything else seems unreal to me, everything beyond this door, everything outside the range of the Darth Vadar sounds coming out of her oxygen machine seems as if it's happening to somebody else, like I'm watching it on television, maybe. And it's interesting, and it's something I want to be involved with, but my brain just can't seem to make the leap from Here (and all that implies) to There (and all that implies).
There's a big gulf between me and the rest of the world - the part of the world that isn't changing their grandmother's diaper (and sheets - why don't those goddamn Depends do what they're supposed to do more than 1/4 of the time?) at three in the morning, or watching an old woman's chest to make sure it's still rising and falling - and I don't know how to bridge it. Phone calls and text messages seem like communiques from far off lands - someone shows me a picture of a fancy new car, someone else just says hello, there's a Facebook message from a far-away cousin, a phone call from someone I didn't even know had my number - I want to grab onto those things as if they were life preservers, use them to help keep me afloat when I feel like there's so much here that it will drag me under. And I can't decide if this is the Real World, or that is (even though I know they both are): I just know that they don't seem to exist within the same atmosphere, in the same time zones, on the same planet.
This disconnection is even harder when I do get a break, when I'm sitting face to face with someone, and there's all these awkward pauses, all these spaces and cracks in our conversation that there never used to be. I feel like I am rusty at speaking to people, even those I talk to everyday: It's as if my conversational skills have deserted me in favor of the ability to withstand the tears of a ninety-five year old woman when you tell her she can no longer walk - and there's no ease to any of my relationships right now, no settled in feeling of comfort and compatablitly, even with those that I am the closest.
Example: Mum will come over to help - most days she comes over to help - and make a misstep in her delivery - do something that pisses off Uncle Jack (which isn't hard) or say something to Grandmother that confuses her and sets off the panic train (which also isn't hard) and instead of relieved, I wind up feeling exhausted to be dealing with that, that now I not only have to deal with the repercussions of her visit, but also have to somehow not hurt her feelings while I'm repairing the damage she did by trying to help. It's often awkward and uncomfortable (mostly because Uncle Jack is a stubborn ass sometimes and he's so set in his ways that even people doing nice things - like bringing over a boatload of food for us to eat - can make him angry) and I find myself having to hold back how upset I am by it in order to smooth it over on both sides, wishing the whole time that I didn't have to play referree to supposed grown-ups, that it would be nice if, once in a while, I could get some actual HELP, that was just help - no strings, no messes to clean up afterwards, no complications - just simple help.
Most of the times I can't get up the energy to feel anything besides terrified that I am going to do something wrong here, that the last memory Grandmother will have is of a frustrated woman struggling not to yell at her to 'just pee already, goddamn it!' instead of a peaceful, loving face. And I want that for her - for her to go knowing that We All love her so much, knowing that she has so many people praying* for her and thinking of her - and I'm horrified that I might not be able to provide it.
*That's a whole 'nother area where my conflicted feelings are doing battle: she's very religious so we've had a bunch of priests come by, and she's had the last rites more than once, but I also think if the hospice people tell me that "all we can do now is pray" one more time I might punch them in the throat.
When I do get beyond that feeling, I feel guilty for wishing this were over, guilty for seeing each peak and valley as just another obstacle for us to overcome -It's especially hard to know that when she does have a 'good day' or make a small improvement, instead of rejoicing for her that she's able to eat a half a turkey sandwich, there's a part of me that wishes it wasn't happening, because it's only prolonging something that is already so difficult for all of us.
I feel guilty for that, for wishing that there would just be an end to things, knowing what that means in reality.
I feel guilty for being here, when I'm needed elsewhere. For missing out on the summer adventures the kids and I had planned, for all the hand holding I haven't been around to provide, the two a.m. phone calls I couldn't answer. I know the world doesn't revolve around me - that me not being at the house for sleepovers, for example, wasn't the end of the world or a crisis for the kids - but that's a two sided-coin: I'm glad that my absence didn't wreck everything for everybody, but at the same time I'm hurt by how (seemingly) easily I was removed. Because it feels like I'm the only one who's upset by my missing out on other things - everybody else just goes about their days and sometimes remembers that, in the ordinary scheme of things, I'd probably be involved in this particular activity too, but it doesn't do more than blip on their radar before they're off for other things.
And how selfish of me is it to admit that that hurts? That not being needed or missed in those other situations is hurting me as much as the fact that I'm missing them in the first place? I obviously want it all at the same time - people who love and miss me, but make do when I'm not there; being needed and valued for what I feel I contribute, but being able to not contribute those things for a while and still be loved and valued.
Basically, my brain is a big toxic mess right now, and I've got it all as far down as I can get it - so that it's simmering somewhere in the background for now, because I have only enough energy (and barely that) to make it through each day here, and the rest of that shit is going to have to wait its turn. And there's a very large part of me that is anxious about what will happen when I'm done focusing on the immediate crisis - how I'm going to pick up all those simmering, boiling pieces of myself and glue them back together into something that resembles a human being - but for now, all I can focus on is converting Mgs to Mls (which is stupid: doctors should write the Rx in the dosage of those little droppers and not expect me to do math every time I've got to give her meds in the middle of the night) or if the sheets are too tight around her feet and could be causing bedsores. I know that the end of that type of worry is fast approaching, and I see the train full of other worries barrelling down the track towards me (and know that it will be loaded with all of the things I'm talking about here PLUS a huge drowning dollop of grief once she passes), but I can't even pretend to deal with it yet.
I'm just going to sit here and breathe, and hope that I'm doing what I can, and that any of the balls I'm not actively juggling will not be too damaged when I get around to picking them up.
Thursday, July 12, 2012
Damn, this is hard.
Things are so much better - and so much worse - than I expected. I don't know what I expected, really: all of the literature the hospice people give you sort of makes it seem like there's a straight line of decline to follow right through their showing up until she passes away. But that's not the way it's going at all, which is excellent, of course, because she's still here, and not excellent, of course, because sometimes she suffers so much.
The hospice people say (over and over again) that their goal is to ease her suffering and to support us. I know they are trying, but I'm not always sure they're meeting those goals. Of major import to me is her suffering - if it were from physical pain (and they warn us that that is likely still to come), it'd be easy to address*, as they've given us all sorts of happy drugs and the lessons on how to administer them should she want them.** But it's a mental sort of suffering that's affecting her, and all of us, the most.
She forgets who I am now. Just a few weeks ago that would have been unthinkable. Now I am my mother, my 2nd cousin, her sister, my sister, her daughter, the nurse, the hotel concierge, a random office worker, the social worker, the hair dresser, the lady who comes to give her a bath. Some of these are quite reasonable - I have a similar look/manner as my mom, I have given her a bath in the past, etc - but if you're telling the woman in front of you (who is sitting in a wheelchair) about your granddaughter who is in a wheelchair, and who visits you sometimes, then all is not well.
Worse than the forgetting though, is the paranoia. The feeling that we're teaming up against her, and the repercussions of that. This morning she woke with the idea that we were going to her mother's funeral. Her mother has been buried for 90 years, and while they say to agree as much as possible, I couldn't very well take her to New Jersey for a funeral that occurred 6 decades before I was born. I can see now, with hindsight, that I should have just kept going with it, for as long as possible, but sometimes that comes back to bite me in the ass too, so I don't know where to put my feet, most of the time. (Also, in my defense, it was 4:30 in the morning. And I had gotten less than 1 hour total of sleep since 4:30 the previous morning.)
Usually, I will just play along until it is either time for her to nap (which is every hour or two, most often) - in which case she may forget what her previous plan for the day was - or distract her enough that we can move on to other things. But this morning, distraction accomplished nothing - she wanted to clean the house for the post-funeral visitors (at 4:30 am), not eat breakfast or have coffee. After having to tell her no for numerous activities that she claimed to want to do next - stuff she or I can not physically accomplish, like climbing the stairs or hanging tablecloths out on the line - I could tell I was getting into trouble. Worse, she showed no signs of slowing down or needing a nap, and now there were only two hours for her to get to her actual plan for the day - a necessary doctor's appointment. (And it takes that long, with breaks built in, for her to get ready for things.)
So now I have to tell her that she's got to get dressed, and that she has to go to the doctor's.
"Do you think I'd choose a doctor over my own mother??"
"No Ma'am, but that mass isn't this morning - we don't have any mass this morning to go to."
Cue horrified look, as if I have just personally, stripped her dead mother bare for the world to see. "She's in the coffin two rooms away, and I'm supposed to just leave her there?"
"But she's not in the coffin, Grandmother, at least not in the house, right now. She died a long time ago, and was buried then. She's not here right now, so we're not disrespecting her."
"Do you take pleasure in reminding me that I've been motherless for most of my life. Do you think I don't know that? "
"No, ma'am. I'm just saying that it's ok to get ready for your appointment, because... that's what we're doing today."
"Well, it's not what I'm doing."
This back and forth only got worse, as every sentence was another foot in my mouth. Eventually she was sitting and (quite pathetically) trying to straighten out her bed with her one injured arm and her other hand full with her cane, on a footstool next to the bed.
"Here, Grandmother, let me help you up from there: it's too low to work from."
"That's not the only thing that's low today."
That's the thing: my Grandmother has a viper's tongue, when provoked. And I've only done it twice in my life, really, and both of those times have been in the past week, and have occurred when I was trying to be helpful.
The other night's episode had me fleeing to the front porch so I could burst in to tears, call my mother, and burst into tears again. She was upset with my uncle (who is her main caretaker, and thus, her main target when paranoia or delusions strike), and was convinced that he had sold her two youngest children away.
This is a common theme when she's delusional - the hospice people told us that usually, people see their departed loved ones and it's all "hooray and glorious and sweetly sentimental". Not for my grandmother. For her, it's people who've been dead for 70 years showing up and standing in the corner, refusing to speak to her. It's little boys (she had seven) disappearing and nobody helping her find them. It's wondering over and over and over again why you can't find this one or that one, or why they would walk through the house without saying anything to you.
So heartfelt reunions, she's had a few, but mostly, her hallucinations are upsetting to her, and leave her stressed and confused. As happened the other night, when her delusions and viperous tongue reached out and spit at me for the first time.
She was against my uncle, which means he can't even go in the room to give her her meds without raising her blood pressure (which, since she has congestive heart failure, is not optimal). So I went in to get her dinner dishes, and she starts telling me that I need to tell her the truth. (Here's the thing: telling her the truth is actually the WORST thing to do, all the professionals warn me.) And when I say that I don't know what she's talking about, I am all of the sudden 'picking sides' and 'making living here unbearable.'
'Grandmother: I don't know what you need, tell me how to help you.'
'I just hope your conscience is clear, NTE, because if you think about it, there are some horrible things happening here, and I hope you're not a party to them.'
'No, ma'am. I'm not a party to anything I'm ashamed of. I'm only here to help you, if I can.'
'I hope that's true.'
20 minutes later, as I'm giving her a kiss goodnight... 'You know Judas kissed Jesus before he betrayed him, right?'
So her memory may not be up to snuff, but her pointed tongue is still as finely sharpened as ever. (And all my aunts and uncles, and the sister who lived here as a teenager, are feeling just the teensiest bit justified by my experiences: not that they want her to hurt my feelings, but "I told you she wasn't always so sweet" has been spoken more than once.)
Hospice doesn't prepare you for decapitation or slow bleeding, however. They just say things like "try to play along, if you can", and "she shouldn't be upset, if possible" without realizing that those are two contradictory pieces of advice. And while I know she doesn't really, in the scheme of things and our relationship and lifespan together, believe that I am a Judas who won't let her go to her own mother's funeral... she believes it right then, and it's hard for me not to take that personally. The only thing that kept me from running home the other day after the Judas comment was that I knew she wouldn't remember it when she woke up, which was less than an hour later, which I was completely right about, but I must have suffered as much as Judas waiting for the cock to crow, knowing I was hurting someone I loved, even if I didn't mean to.
Damn this is hard.
*and what an irony that is to me, the chronic pain patient: if you're dying, we can ease your physical pain; if you're not, you're pretty much out of luck. Good system, everybody!
**Irony part 2: she hates taking medicine, and will not take it at the first sign of pain. Or the second. Or until a part of her anatomy is in danger of falling off.
The hospice people say (over and over again) that their goal is to ease her suffering and to support us. I know they are trying, but I'm not always sure they're meeting those goals. Of major import to me is her suffering - if it were from physical pain (and they warn us that that is likely still to come), it'd be easy to address*, as they've given us all sorts of happy drugs and the lessons on how to administer them should she want them.** But it's a mental sort of suffering that's affecting her, and all of us, the most.
She forgets who I am now. Just a few weeks ago that would have been unthinkable. Now I am my mother, my 2nd cousin, her sister, my sister, her daughter, the nurse, the hotel concierge, a random office worker, the social worker, the hair dresser, the lady who comes to give her a bath. Some of these are quite reasonable - I have a similar look/manner as my mom, I have given her a bath in the past, etc - but if you're telling the woman in front of you (who is sitting in a wheelchair) about your granddaughter who is in a wheelchair, and who visits you sometimes, then all is not well.
Worse than the forgetting though, is the paranoia. The feeling that we're teaming up against her, and the repercussions of that. This morning she woke with the idea that we were going to her mother's funeral. Her mother has been buried for 90 years, and while they say to agree as much as possible, I couldn't very well take her to New Jersey for a funeral that occurred 6 decades before I was born. I can see now, with hindsight, that I should have just kept going with it, for as long as possible, but sometimes that comes back to bite me in the ass too, so I don't know where to put my feet, most of the time. (Also, in my defense, it was 4:30 in the morning. And I had gotten less than 1 hour total of sleep since 4:30 the previous morning.)
Usually, I will just play along until it is either time for her to nap (which is every hour or two, most often) - in which case she may forget what her previous plan for the day was - or distract her enough that we can move on to other things. But this morning, distraction accomplished nothing - she wanted to clean the house for the post-funeral visitors (at 4:30 am), not eat breakfast or have coffee. After having to tell her no for numerous activities that she claimed to want to do next - stuff she or I can not physically accomplish, like climbing the stairs or hanging tablecloths out on the line - I could tell I was getting into trouble. Worse, she showed no signs of slowing down or needing a nap, and now there were only two hours for her to get to her actual plan for the day - a necessary doctor's appointment. (And it takes that long, with breaks built in, for her to get ready for things.)
So now I have to tell her that she's got to get dressed, and that she has to go to the doctor's.
"Do you think I'd choose a doctor over my own mother??"
"No Ma'am, but that mass isn't this morning - we don't have any mass this morning to go to."
Cue horrified look, as if I have just personally, stripped her dead mother bare for the world to see. "She's in the coffin two rooms away, and I'm supposed to just leave her there?"
"But she's not in the coffin, Grandmother, at least not in the house, right now. She died a long time ago, and was buried then. She's not here right now, so we're not disrespecting her."
"Do you take pleasure in reminding me that I've been motherless for most of my life. Do you think I don't know that? "
"No, ma'am. I'm just saying that it's ok to get ready for your appointment, because... that's what we're doing today."
"Well, it's not what I'm doing."
This back and forth only got worse, as every sentence was another foot in my mouth. Eventually she was sitting and (quite pathetically) trying to straighten out her bed with her one injured arm and her other hand full with her cane, on a footstool next to the bed.
"Here, Grandmother, let me help you up from there: it's too low to work from."
"That's not the only thing that's low today."
That's the thing: my Grandmother has a viper's tongue, when provoked. And I've only done it twice in my life, really, and both of those times have been in the past week, and have occurred when I was trying to be helpful.
The other night's episode had me fleeing to the front porch so I could burst in to tears, call my mother, and burst into tears again. She was upset with my uncle (who is her main caretaker, and thus, her main target when paranoia or delusions strike), and was convinced that he had sold her two youngest children away.
This is a common theme when she's delusional - the hospice people told us that usually, people see their departed loved ones and it's all "hooray and glorious and sweetly sentimental". Not for my grandmother. For her, it's people who've been dead for 70 years showing up and standing in the corner, refusing to speak to her. It's little boys (she had seven) disappearing and nobody helping her find them. It's wondering over and over and over again why you can't find this one or that one, or why they would walk through the house without saying anything to you.
So heartfelt reunions, she's had a few, but mostly, her hallucinations are upsetting to her, and leave her stressed and confused. As happened the other night, when her delusions and viperous tongue reached out and spit at me for the first time.
She was against my uncle, which means he can't even go in the room to give her her meds without raising her blood pressure (which, since she has congestive heart failure, is not optimal). So I went in to get her dinner dishes, and she starts telling me that I need to tell her the truth. (Here's the thing: telling her the truth is actually the WORST thing to do, all the professionals warn me.) And when I say that I don't know what she's talking about, I am all of the sudden 'picking sides' and 'making living here unbearable.'
'Grandmother: I don't know what you need, tell me how to help you.'
'I just hope your conscience is clear, NTE, because if you think about it, there are some horrible things happening here, and I hope you're not a party to them.'
'No, ma'am. I'm not a party to anything I'm ashamed of. I'm only here to help you, if I can.'
'I hope that's true.'
20 minutes later, as I'm giving her a kiss goodnight... 'You know Judas kissed Jesus before he betrayed him, right?'
So her memory may not be up to snuff, but her pointed tongue is still as finely sharpened as ever. (And all my aunts and uncles, and the sister who lived here as a teenager, are feeling just the teensiest bit justified by my experiences: not that they want her to hurt my feelings, but "I told you she wasn't always so sweet" has been spoken more than once.)
Hospice doesn't prepare you for decapitation or slow bleeding, however. They just say things like "try to play along, if you can", and "she shouldn't be upset, if possible" without realizing that those are two contradictory pieces of advice. And while I know she doesn't really, in the scheme of things and our relationship and lifespan together, believe that I am a Judas who won't let her go to her own mother's funeral... she believes it right then, and it's hard for me not to take that personally. The only thing that kept me from running home the other day after the Judas comment was that I knew she wouldn't remember it when she woke up, which was less than an hour later, which I was completely right about, but I must have suffered as much as Judas waiting for the cock to crow, knowing I was hurting someone I loved, even if I didn't mean to.
Damn this is hard.
*and what an irony that is to me, the chronic pain patient: if you're dying, we can ease your physical pain; if you're not, you're pretty much out of luck. Good system, everybody!
**Irony part 2: she hates taking medicine, and will not take it at the first sign of pain. Or the second. Or until a part of her anatomy is in danger of falling off.
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