I go to visit my grandmother after she gets out of rehab, following a nasty tumble down the stairs. I've talked to her, as usual, on our Friday night phone calls, but ... something seems off. She drifts, seems to forget she's talking to me, seems ready to hang up as soon as she answers the phone. I'm worried, but my uncle has assured me that it's just a medicine mix-up, and that it's all under control.
Shortly into our visit, I realize that nothing is under control. My uncle is somehow missing the fact that my grandmother is not acting lucidly, that she's easily confused, that her pain is not being managed well. As we talk, he seems to realize that things are worse than he recognized, and I can see that neither of them are sure what the hell comes next.
I have no idea what comes next, except now I am volunteering to stay on the couch, and help with meds and her PT almost before I knew I was thinking it. I was meant to stay for a few days, but - on the first free day that I went home, to shower and refill my pills and gather some supplies and whatnot - I don't make it as far as my house before I am filled with an overwhelming fear, only manage to make it to my room and close the door behind me before I am sobbing uncontrollably. The only thing I am sure of is that I need to be there, because they need me, even though I will be able to solve nothing, even though there is no possibility of fixing this.
And that was the last night I spent anywhere but my Grandmother's couch until three weeks after she passed away.
----
This time, my mother and I have planned to come down to my brother and sister-in-law's house every Thursday, and at least one other day during the week, to clean the house and distract & feed the children, and just... be supportive. The cancer is stage 4: we are hoping for miracles, but know how unlikely they are. We do not care. She does not care, and so treatment continues.
We are there two consecutive Thursdays, straightening things up and moving all their shit into neater piles, and helping the (not so) littles with their homework - basically doing the busywork of life that falls to the side when you're too sick to do anything but sleep and take your meds.
My brother slowly seems to understand that we are here to help and not to just mess with his shit, and starts confiding how scared he is, how desperately hard this is becoming, how he doesn't know if he's going to be able to do it. On Facebook, he cracks a 'joke' about Stage 4 Cancer and spousal weight loss, and I can see how tightly he is holding on to his edges, how close he is to his private apocalypse, and I ask how I can help.
He tells me he trusts me more than anyone else, and he needs someone he can trust. He needs someone. I know how to be someone, and I push aside the thoughts of how often I need a someone and can find no one, push aside all of the non-essential elements of my own brand of being sick, and transition into helper-mode. I make schedules and organize paperwork and calendars. I make sure someone else will always be here, even if that someone else usually winds up being me.
Not being able to drive, and Mom having a job now, and scarce/uneven coverage during the day, mean that it's much easier to just camp out in their comfy chair, to claim a corner of the living room as my own. Sleepover almost never-ending, for now. For today.
And here there is hope, and here there are treatments, and here there is still that irreversible diagnosis waiting for us at some end, but it isn't now.
For now, I try to coax my sister-in-law to eat more than three bites of noodles, of pizza, of absolutely anything, and lament that radiation makes everything taste like chalk. For now I keep med schedules and daily logs and ask otherwise inappropriate questions about bathroom habits, and hope that, somehow, she will forgive me. For doing her kids' homework with them and making decisions about whether they can go over their friend's houses; for camping out on her couch when she probably just wants to be alone; for following her into another room when she can't really tell that her feet are tangled in the oxygen cord.
For all the little things that piss me off the most when I'm sick, and I try so hard to avoid, but somehow, occasionally, still slip out. For poaching and nagging and making a sad face when I think she's not looking.
That's how it happens - how, piece by piece, I become a fixture in someone else's story, someone else's home, someone else's days. How I turn off my own life - just for this little while - in the hopes of helping. Just Helping. Sweet jesus, just Let Me Help.
In case you were wondering. -
And a lot of people seem to be, and aren't exactly nice when they inquire - "How can you take care of someone else, when you can barely take care of yourself?" they ask. You're right - taking care of me is a struggle. Every. Single. Day. But a lot of that struggle is sitting around, laying around, distracting myself from the pain. Turns out; it's not that much harder to do in somebody else's living room, watching over them while they rest. Waking them up every few hours to try and get them to eat. Reminding them to take their pills when your alarm goes off for you to take your own.
Not saying it isn't hard. Because it's draining as hell and I couldn't be sorer outside of a 5-alarm-flare, but ... it's worth it. To be able to make her smile when I poke fun at my brother. To make my brother be able to go to work without having a panic attack. To hug some kiddos and let them pretend during a game of War. To talk to her sister and let her know that she matters to us too, that Sister-in-law is a part of our family, and that means that her sister can cry on my shoulder any day. To learn more about her, filing away bits and pieces for tomorrows.
If it's something that winds up being too physically taxing - and it already is, it always is - then that's a thing I'll deal with. Because there are a lot of parts of my life I have had to shut down, turn away from, pretend don't matter, and this is one area I'm just not willing to do that with.
But in case you were wondering, that's how it happens.
Showing posts with label Bravery. Show all posts
Showing posts with label Bravery. Show all posts
Sunday, November 02, 2014
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.
Wednesday, July 04, 2012
She always liked the Snoopy one
I've been trying for weeks to write coherently about where I am and what I'm doing. And all I keep coming back to is this: I am living on my grandmother's couch, from which I can see my grandmother's hospital bed at all times. I am making three breakfasts a day, when necessary, and sleeping in 10- 25 minute bursts (finally, a practical use for my painsomnia!) and talking about what happened 75 years ago as if it were happening right now. And I am doing all of those things because my grandmother is dying.
Or she's not. (It depends on the day, really.)
And it's happening both too quickly and too slowly; too tenderly and too angrily; too neatly and too messily. And the rest of my life right now makes about as much sense as that previous sentence.
---
About two months ago, I started to get more worried than usual about my grandmother, because during our weekly visits and phone calls, she was saying things that made very little sense, her voice would get whispery or slurred, she'd go off on tangents about subjects we'd not been discussing, and, eventually she stopped being up for visits, and was ending our phone calls rather abruptly ~ sometimes in the middle of a sentence, she'd say "Well, give my love to everyone: talk to you next week", and hang up the phone. Now she's never been particularly skilled at using the phone (especially the newfangled cordless 'doohickey' my uncle installed for her a few years back), so this was strange, but not completely out of character. When I'd ask my uncle how she was, he'd say things that sort of glossed over my concerns - not addressing them so much as giving me a blanket "oh, it's been a bad day/week" and moving past it.
But enough things were happening that I was majorly concerned, so when he started ignoring my calls 3 times out of 5, and she stopped being available for even the slightest phone call, I decided it was serendipitous that the upstairs bathroom needed re-tiling at the exact moment that I needed to get into the house, and asked my uncle for refuge from the smells, hoping it would get my foot in the door here. I got that far in, and - aside from Tuesdays with the kids and a shower at home, and my own doctor's appointments - I haven't left since.
Because she wasn't just not feeling well: she was decidedly different. Failing. Stumbling over sharp edges and corners in conversations that should have gone smoothly. Sleeping all hours of the day, and getting her days and nights confused. Asking for dinner at 6:45 in the morning, demanding to know why we were starving her, even though she'd just eaten at midnight.
Her confusion is a live wire of a thing: you never know which Grandmother is going to wake up. The one who remembers who you are and how she used to lay you down to sleep on a quilt in the den while your mother went to school, or the one who thinks this place, the house she's lived in for 50 years and raised 9 children in, is a hotel or a hospital that you work in and that she'd like to check out of thank you very much. She could take a nap at noon and wake up around three, ready to sweep the porch and sit out in her rocker. Or she could stay awake till 4 in the morning, moaning because you've just told her that four of her sons are dead and she thinks it just happened right now.
"Humor her as much as possible" the hospice people say: If she tells you she sees her dead sister bustling around in her socks and assigning chores, play along if you can. If she thinks she's the charge nurse and is waiting for doctor's orders, let her wait till she gets tired and moves on. That's all good in theory, but in practice, it's having her call you a traitor because you knew that her brothers weren't really dead and you've been letting them hide here all this time and now won't bring them out to her. It's her giving you a dead-eyed stare for 30 minutes because she's sure that you've allowed her "little boys" to be sent away without her consent. It's handing her her purse 4 times in an hour, and helping her count and recount the same $197 dollars in cash she's had in there since May. It's eating steak and baked potatoes at 11:30 a m because she insists it's time for dinner.
Some of those things are doable, and others - because even in her confusion, she's no dope - are not. If she tells you she say a dog in the kitchen last night, and you play along, she wants to know who is feeding the dog, and where it is staying right now, and who allowed a dog in her kitchen in the first place, and aren't you allergic to dogs? And here is where my poor lying skills are put to the test, and where she sees through all my attempts to talk around the subject, and where, inevitably, one of us will wind up upset.
At first, my uncle assumed that this was a complication of one of the medications she was given for her fall down the stairs - she is particularly sensitive to pain meds, and the oxycodone made her hallucinate enough that the doctor took her off it immediately - but now she's been off those meds for months, and she is not improving. And we're remembering little things: like that fall down the stairs - what was she doing up, getting ready for church at 3:30 in the morning in the first place? Like all the conversations we've had to repeat because she didn't remember what we were talking about at all. Like how she seemed to forget that her son and nephew had both died last year, and we'd all assumed that it was just how she was grieving this time - that, having so much heaviness to bear, her brain had decided to remember it only when necessary, and to spare her most of the time. How even last year, maybe two years ago, our visits were getting shorter, and she was going less places, and sleeping more, and participating less, and all of the little things that seemed like just "oh my goodness she's going to be 95 years old, if she wants to go slower, cut her a break!" and now seem like "how did we miss that?"
I think he still assumes that the "confusion" will clear up, at least some - I'm the only one using the word dementia, and when I brought it up the first time, I might as well have punched myself in the face, for the look he gave me. But we both know - this is not normal, this is not getting better, this is not going away.
The hospice people were called in when her aftercare for the fall ran out: she still wasn't able to shower by herself or even get up the stairs very much, and her congestive heart failure was progressing to the point where she needed oxygen some of the time. So the hospice people came in, and keep coming in to help us, but they aren't here to stop anything from happening - just to make it easier on her - and us, I suppose - as it happens.
Her bed's been in the downstairs dining room since the fall (and by fall I mean both the tumble down the stairs and the season which it occurred), but now it's a hospital bed, and the room still has the look of a temporary, make-do space. Her clothes - the housecoats she wears everyday - are stacked on chairs and on the buffet, she doesn't have even a drawer down here she can call her own. I want to have things brought down, things she can recognize as part of her room, pictures or a bedside table, or something, but she still thinks she'll make it back upstairs, and my uncle sides with her (and is the only one of the three of us who can climb the stairs), so I am outnumbered.
I know I'm making some progress with him - he's started telling his brothers and sisters more of the truth when they call. Grandmother is good at pretending - on the phone or when the doctor/nurse/hospice person is here - that she's holding it together pretty well. And sometimes she is. But those times are getting fewer, and the times when she is not are getting more severe, and to say anything else at this point is straight out lying.
I've been avoiding cousins calls for weeks now, knowing that I have to say the truth, and not wanting the words to have to come out of my mouth. My brother knows now, my sisters: telling them was impossible - what do I say? She is not doing well, except for when she is fine. She needs the oxygen every day now, but sometimes it makes things so much better you wonder if it isn't fairy dust. Other times the cannula might as well be blocked, for all the good it does as you sit and watch her chest heave, hoping she catches the next breath. How do you explain that things are routine and desperate all at the same time? How do you get them to see that it is urgent, but not critical today, and that that may change by the time we finish our conversation?
I put such a look of fear on my brother's face, and I know that I feel it as well - The end is coming, and I can't stop it but at the same time, it's just an ordinary Tuesday here, with Grandmother lamenting the state of her curtains ("they never got washed for Christmas, and here it's Easter all ready" "No Grandmother: it's the 4th of July" "That's what I said: didn't I?" "Yes ma'am") and hoping that mail might be interesting. Nothing out of the ordinary, really, except for everything.
When I say that it's happening "too quickly and too slowly", I mean she would hate this, if she knew. She does hate it, when she realizes. Sometimes she has clarity, and those times are the worst, because she knows that she isn't clear the rest of the times - that her days are blanks and holes and that during those blanks and holes she may say things she doesn't mean.
"I hope you know how much I love you," she'll say when she's clear, as if to make up for all the times she'll forget who I am tomorrow, all the misunderstandings we'll have before she's clear again. She was never one to say that, not really: we all knew she loved us, but it wasn't her way to come out and say it. So it means all the more that she does it now. And I do know, I do.
But I don't know what to do, because most of the time I'm just sitting here. Doing the laundry and talking about the time her uncle was killed on the ferry to Staten Island, marking time. We make it through another day, and I write a big X on the calendar, because she's sure to ask me 17 times tomorrow what the date is, and if it's not marked off we'll have to argue about it, and above all, I'm trying to keep the peace. When she gets upset, her breathing gets worse, and she gets more confused, and it certainly isn't worth that worry, to remember the date.
I can watch her heart beat in her neck - the vein there bulges some, and it makes the skin expand like a bullfrog's sometimes when she's breathing too hard. Sometimes her whole chest caves in on a breath, and I hold mine while I wait for it to re inflate. Enough beats, enough bulges, and we make it through to another X, and I wonder what I'm doing here, when she seems OK, really: tired, sure & confused, but maybe I'm making too much of it. Maybe I'm worrying everybody and throwing off our whole summer plans and lives and she'll just keep ticking, just keep making it through the days.
It's not a waste, me being here, because I'm spending time with her, which has always been one of my favorite things, but is now also a strain at times; and I sit and listen to her worries - and oh boy does she have worries, she might be 89% worries at this point; and I make sure she doesn't tangle herself up in the sheets when she gets up to go to the bathroom 16 times during the night, but sometimes it feels like I've put everything on hold until the next horrible thing happens, and that's a terrible feeling.
Like I'm waiting for her to get worse, because I know she's not going to get better, and I wonder if she thinks that's why I'm here, because she can feel how worried I am sometimes, can read it on my face.
"Why are you so sad?" She'll ask me. When she asks me with my name, I can smile, and say "not sad, just tired", and have it be the truth. But sometimes she'll ask as if my being sad is part of some plot against her, or just another sign that she's dead and nobody told her, or yet another example of how we are all hiding things from her, and then I don't have the poker face to pull it off. And I hope I'm not making it worse, feeling sad, when she needs me to bring peace, so I suck it back in, and hope it doesn't leak out so much.
I feel like a float in the Macy's parade, I've got so much sucked in. Because today is Wednesday, July fourth and it's only 9:30 in the morning, and so far she's had a sandwich at 2:30, cookies and milk at 6:00, heard the doorbell ringing at 6:15. And we've talked about a non-existent trip to New York that nobody is making, the time in the 70s that she walked down to listen to the Pops with my two oldest cousins and they all danced in the street on the way home, and at least twice she's told me how to wash the windows when we take the curtains down today.
You know, at the end of those parades, a long time ago, they used to just cut the strings and let the floats drift away. I'm not sure I want to be around when the time comes to let all the sadness out, and floating away sounds heavenly right about now. But I'm here. And I'm sticking. And it sucks, and I wish I could write about it in a way that made logical sense, but it doesn't make logical sense, so we're stuck with this, pouring a little bit of the sadness and worry and stress out onto this page, so I can face going back in there and talking about the goddamn curtains again while I try not to count her pulse or monitor her breathing.
Or she's not. (It depends on the day, really.)
And it's happening both too quickly and too slowly; too tenderly and too angrily; too neatly and too messily. And the rest of my life right now makes about as much sense as that previous sentence.
---
About two months ago, I started to get more worried than usual about my grandmother, because during our weekly visits and phone calls, she was saying things that made very little sense, her voice would get whispery or slurred, she'd go off on tangents about subjects we'd not been discussing, and, eventually she stopped being up for visits, and was ending our phone calls rather abruptly ~ sometimes in the middle of a sentence, she'd say "Well, give my love to everyone: talk to you next week", and hang up the phone. Now she's never been particularly skilled at using the phone (especially the newfangled cordless 'doohickey' my uncle installed for her a few years back), so this was strange, but not completely out of character. When I'd ask my uncle how she was, he'd say things that sort of glossed over my concerns - not addressing them so much as giving me a blanket "oh, it's been a bad day/week" and moving past it.
But enough things were happening that I was majorly concerned, so when he started ignoring my calls 3 times out of 5, and she stopped being available for even the slightest phone call, I decided it was serendipitous that the upstairs bathroom needed re-tiling at the exact moment that I needed to get into the house, and asked my uncle for refuge from the smells, hoping it would get my foot in the door here. I got that far in, and - aside from Tuesdays with the kids and a shower at home, and my own doctor's appointments - I haven't left since.
Because she wasn't just not feeling well: she was decidedly different. Failing. Stumbling over sharp edges and corners in conversations that should have gone smoothly. Sleeping all hours of the day, and getting her days and nights confused. Asking for dinner at 6:45 in the morning, demanding to know why we were starving her, even though she'd just eaten at midnight.
Her confusion is a live wire of a thing: you never know which Grandmother is going to wake up. The one who remembers who you are and how she used to lay you down to sleep on a quilt in the den while your mother went to school, or the one who thinks this place, the house she's lived in for 50 years and raised 9 children in, is a hotel or a hospital that you work in and that she'd like to check out of thank you very much. She could take a nap at noon and wake up around three, ready to sweep the porch and sit out in her rocker. Or she could stay awake till 4 in the morning, moaning because you've just told her that four of her sons are dead and she thinks it just happened right now.
"Humor her as much as possible" the hospice people say: If she tells you she sees her dead sister bustling around in her socks and assigning chores, play along if you can. If she thinks she's the charge nurse and is waiting for doctor's orders, let her wait till she gets tired and moves on. That's all good in theory, but in practice, it's having her call you a traitor because you knew that her brothers weren't really dead and you've been letting them hide here all this time and now won't bring them out to her. It's her giving you a dead-eyed stare for 30 minutes because she's sure that you've allowed her "little boys" to be sent away without her consent. It's handing her her purse 4 times in an hour, and helping her count and recount the same $197 dollars in cash she's had in there since May. It's eating steak and baked potatoes at 11:30 a m because she insists it's time for dinner.
Some of those things are doable, and others - because even in her confusion, she's no dope - are not. If she tells you she say a dog in the kitchen last night, and you play along, she wants to know who is feeding the dog, and where it is staying right now, and who allowed a dog in her kitchen in the first place, and aren't you allergic to dogs? And here is where my poor lying skills are put to the test, and where she sees through all my attempts to talk around the subject, and where, inevitably, one of us will wind up upset.
At first, my uncle assumed that this was a complication of one of the medications she was given for her fall down the stairs - she is particularly sensitive to pain meds, and the oxycodone made her hallucinate enough that the doctor took her off it immediately - but now she's been off those meds for months, and she is not improving. And we're remembering little things: like that fall down the stairs - what was she doing up, getting ready for church at 3:30 in the morning in the first place? Like all the conversations we've had to repeat because she didn't remember what we were talking about at all. Like how she seemed to forget that her son and nephew had both died last year, and we'd all assumed that it was just how she was grieving this time - that, having so much heaviness to bear, her brain had decided to remember it only when necessary, and to spare her most of the time. How even last year, maybe two years ago, our visits were getting shorter, and she was going less places, and sleeping more, and participating less, and all of the little things that seemed like just "oh my goodness she's going to be 95 years old, if she wants to go slower, cut her a break!" and now seem like "how did we miss that?"
I think he still assumes that the "confusion" will clear up, at least some - I'm the only one using the word dementia, and when I brought it up the first time, I might as well have punched myself in the face, for the look he gave me. But we both know - this is not normal, this is not getting better, this is not going away.
The hospice people were called in when her aftercare for the fall ran out: she still wasn't able to shower by herself or even get up the stairs very much, and her congestive heart failure was progressing to the point where she needed oxygen some of the time. So the hospice people came in, and keep coming in to help us, but they aren't here to stop anything from happening - just to make it easier on her - and us, I suppose - as it happens.
Her bed's been in the downstairs dining room since the fall (and by fall I mean both the tumble down the stairs and the season which it occurred), but now it's a hospital bed, and the room still has the look of a temporary, make-do space. Her clothes - the housecoats she wears everyday - are stacked on chairs and on the buffet, she doesn't have even a drawer down here she can call her own. I want to have things brought down, things she can recognize as part of her room, pictures or a bedside table, or something, but she still thinks she'll make it back upstairs, and my uncle sides with her (and is the only one of the three of us who can climb the stairs), so I am outnumbered.
I know I'm making some progress with him - he's started telling his brothers and sisters more of the truth when they call. Grandmother is good at pretending - on the phone or when the doctor/nurse/hospice person is here - that she's holding it together pretty well. And sometimes she is. But those times are getting fewer, and the times when she is not are getting more severe, and to say anything else at this point is straight out lying.
I've been avoiding cousins calls for weeks now, knowing that I have to say the truth, and not wanting the words to have to come out of my mouth. My brother knows now, my sisters: telling them was impossible - what do I say? She is not doing well, except for when she is fine. She needs the oxygen every day now, but sometimes it makes things so much better you wonder if it isn't fairy dust. Other times the cannula might as well be blocked, for all the good it does as you sit and watch her chest heave, hoping she catches the next breath. How do you explain that things are routine and desperate all at the same time? How do you get them to see that it is urgent, but not critical today, and that that may change by the time we finish our conversation?
I put such a look of fear on my brother's face, and I know that I feel it as well - The end is coming, and I can't stop it but at the same time, it's just an ordinary Tuesday here, with Grandmother lamenting the state of her curtains ("they never got washed for Christmas, and here it's Easter all ready" "No Grandmother: it's the 4th of July" "That's what I said: didn't I?" "Yes ma'am") and hoping that mail might be interesting. Nothing out of the ordinary, really, except for everything.
When I say that it's happening "too quickly and too slowly", I mean she would hate this, if she knew. She does hate it, when she realizes. Sometimes she has clarity, and those times are the worst, because she knows that she isn't clear the rest of the times - that her days are blanks and holes and that during those blanks and holes she may say things she doesn't mean.
"I hope you know how much I love you," she'll say when she's clear, as if to make up for all the times she'll forget who I am tomorrow, all the misunderstandings we'll have before she's clear again. She was never one to say that, not really: we all knew she loved us, but it wasn't her way to come out and say it. So it means all the more that she does it now. And I do know, I do.
But I don't know what to do, because most of the time I'm just sitting here. Doing the laundry and talking about the time her uncle was killed on the ferry to Staten Island, marking time. We make it through another day, and I write a big X on the calendar, because she's sure to ask me 17 times tomorrow what the date is, and if it's not marked off we'll have to argue about it, and above all, I'm trying to keep the peace. When she gets upset, her breathing gets worse, and she gets more confused, and it certainly isn't worth that worry, to remember the date.
I can watch her heart beat in her neck - the vein there bulges some, and it makes the skin expand like a bullfrog's sometimes when she's breathing too hard. Sometimes her whole chest caves in on a breath, and I hold mine while I wait for it to re inflate. Enough beats, enough bulges, and we make it through to another X, and I wonder what I'm doing here, when she seems OK, really: tired, sure & confused, but maybe I'm making too much of it. Maybe I'm worrying everybody and throwing off our whole summer plans and lives and she'll just keep ticking, just keep making it through the days.
It's not a waste, me being here, because I'm spending time with her, which has always been one of my favorite things, but is now also a strain at times; and I sit and listen to her worries - and oh boy does she have worries, she might be 89% worries at this point; and I make sure she doesn't tangle herself up in the sheets when she gets up to go to the bathroom 16 times during the night, but sometimes it feels like I've put everything on hold until the next horrible thing happens, and that's a terrible feeling.
Like I'm waiting for her to get worse, because I know she's not going to get better, and I wonder if she thinks that's why I'm here, because she can feel how worried I am sometimes, can read it on my face.
"Why are you so sad?" She'll ask me. When she asks me with my name, I can smile, and say "not sad, just tired", and have it be the truth. But sometimes she'll ask as if my being sad is part of some plot against her, or just another sign that she's dead and nobody told her, or yet another example of how we are all hiding things from her, and then I don't have the poker face to pull it off. And I hope I'm not making it worse, feeling sad, when she needs me to bring peace, so I suck it back in, and hope it doesn't leak out so much.
I feel like a float in the Macy's parade, I've got so much sucked in. Because today is Wednesday, July fourth and it's only 9:30 in the morning, and so far she's had a sandwich at 2:30, cookies and milk at 6:00, heard the doorbell ringing at 6:15. And we've talked about a non-existent trip to New York that nobody is making, the time in the 70s that she walked down to listen to the Pops with my two oldest cousins and they all danced in the street on the way home, and at least twice she's told me how to wash the windows when we take the curtains down today.
You know, at the end of those parades, a long time ago, they used to just cut the strings and let the floats drift away. I'm not sure I want to be around when the time comes to let all the sadness out, and floating away sounds heavenly right about now. But I'm here. And I'm sticking. And it sucks, and I wish I could write about it in a way that made logical sense, but it doesn't make logical sense, so we're stuck with this, pouring a little bit of the sadness and worry and stress out onto this page, so I can face going back in there and talking about the goddamn curtains again while I try not to count her pulse or monitor her breathing.
Sunday, August 08, 2010
*Caution: Very Sad Post*
This blog has always served as a kind of venting place for me - Good or bad, if I'm feeling it, chances are, you know about it. I've written too many times to count about my worries, my health issues, my family and how they are making my brain hurt (see tag "Making Me Crazy") or how they are making me smile (check out "Love" or anything tagged nephew or niece). I've tried to tell the stories of my life, as honestly as I know how - positive, negative, or somewhere in between. It's not always the easy thing to do, but I feel like that's the kind of writing I want/need to do: To share my experiences with all of you, to know that I'm extending my own community, just by living my life and talking about it.
But, like I said: it's not always easy to do, and I am now going to type a sentence it had never occurred to me it would be necessary to type... This past week, our family suffered a tragic loss: my cousin's baby was born still, three days past her due date. I ordinarily would have no compunction about talking about it here (the myriad of posts about the loss of my Nana should prove that), but every time I've sat down to do just that, I come back to this single fact: I don't feel like it is my story to tell.
It's effected me, yes: it's effected our whole family: It is a terrible and shocking sadness. And yet, my story is about how I had to sit, helpless, and listen to my uncle rant and rave about fairness and unfairness and if our family could be expected to bear anything else. My story is about how that little white box was the single saddest thing I have ever seen in my life and how I (who doesn't really believe in god) found myself praying for everyone in the church to keep standing, just so I wouldn't have a view of it anymore. My story is about how incongruous it seemed to be watching my other cousin's two year old twins at the hospital, making them giggle and reading them stories, knowing that a hallway away their entire family - my family - was being swamped with pain.
In this instance, my story is basically that I am unable to help with their story - that, aside from letting them know I love them - I can think of nothing to do to help the couple whose story is that they just buried their first daughter before she took her first breath; to help the grandparents and aunt whose story is that they never got to dote on the first baby girl for their side of the family; to help any of us because I can't answer the questions of why something this horrible could happen, why the word stillborn is still in our vocabulary in the year 2010, why nobody ever told us that being a grown up was going to this unbearably painful.
And yet: I couldn't say nothing here - I couldn't just let it pass by unremarked. I've tried to write about sixteen other posts since then as well, and each of them falls apart in my exhausted brain. So do blog comments, and Facebook status updates: I can think of nothing, really, besides: "I am sad." "If I am this sad, I do not understand how my cousins are breathing." "Did this last week really happen? Why isn't there some undo button, because last Friday is looking spectacular, comparatively?" "I wish I could help you. Please talk to me." or "Please don't talk to me, because I don't know what to say, but know that I love you. A lot."
And not mentioning it, well it seemed like lying: I am going to try to write other things this week, to post a best shot tomorrow, if I can, or point you to something awesome or funny if I should happen to be able to concentrate long enough to read it. I'm going, in short, to try to get back to the things I enjoy, and see if I can't try to enjoy them again. But it's not going to be simple, and I'm going to be dealing with this grief for quite a while. If I didn't mention it - as easy as that seems, to just not say anything, to let all of you continue to live in a world where stillborn is just a word from the ancient past - it would also feel dishonest of me and disrespectful to the stories of the people I love. I wouldn't feel like I could share my truth, my life, and if I can't do that, what's the point of this whole blog thing anyways?
So I'm going to write when I can, and I'm going to try to crawl out of the melancholy that has - rightfully so - enveloped us here this past week. And I might need your help, so I'm thanking you ahead of time for listening.
*Since I have been trying to weed through my Google Reader, attempting to read only things that might cheer me up, I've been wishing that there was some sort of warning system for posts that start out good, and then take a dramatically sad turn. So I could skip them for now, come back to them when everything in the world - including a damn LOLCat - isn't making me cry. So, I figured I'd better warn y'all, just in case.
But, like I said: it's not always easy to do, and I am now going to type a sentence it had never occurred to me it would be necessary to type... This past week, our family suffered a tragic loss: my cousin's baby was born still, three days past her due date. I ordinarily would have no compunction about talking about it here (the myriad of posts about the loss of my Nana should prove that), but every time I've sat down to do just that, I come back to this single fact: I don't feel like it is my story to tell.
It's effected me, yes: it's effected our whole family: It is a terrible and shocking sadness. And yet, my story is about how I had to sit, helpless, and listen to my uncle rant and rave about fairness and unfairness and if our family could be expected to bear anything else. My story is about how that little white box was the single saddest thing I have ever seen in my life and how I (who doesn't really believe in god) found myself praying for everyone in the church to keep standing, just so I wouldn't have a view of it anymore. My story is about how incongruous it seemed to be watching my other cousin's two year old twins at the hospital, making them giggle and reading them stories, knowing that a hallway away their entire family - my family - was being swamped with pain.
In this instance, my story is basically that I am unable to help with their story - that, aside from letting them know I love them - I can think of nothing to do to help the couple whose story is that they just buried their first daughter before she took her first breath; to help the grandparents and aunt whose story is that they never got to dote on the first baby girl for their side of the family; to help any of us because I can't answer the questions of why something this horrible could happen, why the word stillborn is still in our vocabulary in the year 2010, why nobody ever told us that being a grown up was going to this unbearably painful.
And yet: I couldn't say nothing here - I couldn't just let it pass by unremarked. I've tried to write about sixteen other posts since then as well, and each of them falls apart in my exhausted brain. So do blog comments, and Facebook status updates: I can think of nothing, really, besides: "I am sad." "If I am this sad, I do not understand how my cousins are breathing." "Did this last week really happen? Why isn't there some undo button, because last Friday is looking spectacular, comparatively?" "I wish I could help you. Please talk to me." or "Please don't talk to me, because I don't know what to say, but know that I love you. A lot."
And not mentioning it, well it seemed like lying: I am going to try to write other things this week, to post a best shot tomorrow, if I can, or point you to something awesome or funny if I should happen to be able to concentrate long enough to read it. I'm going, in short, to try to get back to the things I enjoy, and see if I can't try to enjoy them again. But it's not going to be simple, and I'm going to be dealing with this grief for quite a while. If I didn't mention it - as easy as that seems, to just not say anything, to let all of you continue to live in a world where stillborn is just a word from the ancient past - it would also feel dishonest of me and disrespectful to the stories of the people I love. I wouldn't feel like I could share my truth, my life, and if I can't do that, what's the point of this whole blog thing anyways?
So I'm going to write when I can, and I'm going to try to crawl out of the melancholy that has - rightfully so - enveloped us here this past week. And I might need your help, so I'm thanking you ahead of time for listening.
*Since I have been trying to weed through my Google Reader, attempting to read only things that might cheer me up, I've been wishing that there was some sort of warning system for posts that start out good, and then take a dramatically sad turn. So I could skip them for now, come back to them when everything in the world - including a damn LOLCat - isn't making me cry. So, I figured I'd better warn y'all, just in case.
Thursday, June 24, 2010
33 days post op,
and I am starting to finally feel like I might actually be a human-type person again. I'm not springing into cartwheels, or feeling the magical special cure that I had, deep down, obviously, been hoping for, but I no longer feel as if someone decided to whack me in the face with a mallet, while at the same time letting some sort of giant lizard claw its way down my throat. You can imagine that this is a bit of a relief.
I managed to catch, in these 33 days, at least one sinus infection (either inadequately quashed the first time and capable of rebounding, or a party-bug who invited a friend over; impossible to tell) and a case of thrush that made me want to rip my tongue out and use sandpaper on it. Thankfully, the thrush has cleared up, and the infection(s) are on their way out as well. (She says, trying not to jinx herself this time.)
So I'm going to talk a little bit about a couple of things now, and I'm going to warn you that the very first thing I'm going to talk about is exceedingly gross. As in "Are you really about to tell the internet that...?" level gross. But here is where I talk about things that I can't discuss in real life/make my family understand, and so, you lovelies have a bit of forewarning that you might want to skip item #1.
Item #1: Every week since my surgery (and twice the first week immediately following the surgery), I have had to go to the ENT surgeon for a check in. During these check ins, he pokes at my face a little bit, looks up my nose, down my throat and in my ears - in short, all the things you expect the ENT to do. And then things take a dramatic turn for the worse, and I break out in the kind of flop sweat usually only experienced when the dentist turns around with that huge needle in his hand. Luckily, the ENT does not start poking me with needles, but, rather unluckily, he instead decides that now is the time to insert things up my nose.
UP my NOSE, people. My very tender, and much abused nose. First, he sprays a little numbing stuff, which is about as useful as tap water would be, and then he uses a long thin strip of cotton ball, doused in decongestants, and his looooooong metal pliers, and he stuffs the cotton ball up my nostrils. He leaves it there for a minute and disappears behind me, while the medicinal tasting decongestant drips out of my nose and down the back of my throat.
The first time this happened, I was a little bit shocked: I assumed that when he said he was going to use a decongestant, that he meant a nasal spray. And that was going to be bad enough, because my nose was already swollen and sore, and now he was going to spray stuff up there? Bah. So I was sitting there all shocked and drippy, waiting for him to take this gross stuff out of my nose when, all of the sudden, there's an unexpected noise behind me. A mechanical noise, a little hum that is entirely out of place. And then things go way downhill, way too fast.
Because the mechanical humming noise is coming from some sort of vacuum, not unlike an elongated, metal version of the doohickey that the dentist uses to suck spit out of your mouth during a cleaning, and the ENT is telling me that this damn thing is going up my nose to "clean out what's left."
Are you freaking kidding me??? This was not mentioned during the numerous pre-op discussions we had about surgery and aftercare; This was not mentioned in my aftercare instructions; This was not mentioned anytime during the previous 15 minutes I've been sitting here talking to you: NOW you are telling me, as you approach me with that goddamn thing, that you're going to suck stuff out of my sinuses? I am so not on board with this.
But, what choice did I have, really, since this is part of the after care - I'm going to go through all the pain of the surgery, and then have it be a waste because I didn't do the necessary follow up? I don't think so. How bad can it be, really?
Oh, it can be really, really bad. *I should put a disclaimer here that this was my experience, and the whole sucking out of sinuses might not be a big deal for other people: I can't really say. Except for another guy who was having the same surgery/procedure done on my first post-op visit who yelled really loudly from inside the room while I was waiting for my appointment, so he obviously didn't enjoy it either (if only I had known why he was yelling before I went in...). I can only say, that for me? It was a gigantic deal. Not just because I was already in a lot of pain, although I was, but because, to me, it feels like drowning.
The sensation of not being able to breathe through your noise is bad enough, but you add in the forced pressure of that little vacuum, and the fact that you can feel it not just in your sinuses and nose, but in the back of your throat? And it adds up to a completely overwhelming and painful experience. I cried, the first time, and (Mum told me later) was also, from the waiting room, quite audible in my distress. I cried the second and third times too, and I'm not even the tiniest bit embarrassed by that fact. (It was a little bit less traumatic the last two times, thankfully.)
It hurt, and I am already hurting enough.
But it was the panic that it caused me that was most distressing... the doctor actually told me to "breathe through your mouth" (as if I had any other options) "or you're going to have a panic attack". That is because you are cutting off my air supply, and my body, for some reason thinks this is a bad idea. He also appeared shocked that I would find this so upsetting, only adding to my impression of him as completely out of touch with reality ("7-10 days and you'll be good as new!"; "No patient has ever had a sinus infection so soon, post-op: are you sure that's what it is?"; "You should chew more gum to help stretch those muscles, did I forget to tell you that?").
The only good news is that I now don't have to go back for another month, baring additional issues, and that time, he may not even have to use the vacuum. Fingers crossed! End of totally disgusting and barbaric Item #1.
Item #2 - I have missed out on a lot of things in the course of the 33 days: a cousin's wedding (which apparently included much celebrating), my birthday, a college reunion I wasn't going to go to anyways (but I would've liked to make the my-girls dinner pre-party), Lil Girl's end of school celebration, No Longer Youngest Nephew's school report (which I have never been invited to before :( ), and more than a bit of family drama that I'm still trying to catch up with. Everybody in my family had issues during this period, and I feel like I am a page or two behind on the stories, which is a feeling I truly hate. I also feel like this lag in my understanding of things has caused new drama, which I have to figure out how to fix, but can't till my brain is back at full power, which sucks. This is one of the things I tried to factor into my decision to have the surgery - knowing I would be so far behind/out of the loop, and trying to make it be ok, but I absolutely hate not being there for people when they need me (and we can talk about why I don't expect people to show up for me when I need them some other time, thank you very much). It has been hard, playing catch up, apologizing for the gaps and lapses, the gaffs and digs I've delivered unknowingly. Or trying to, at least.
But at the same time, I'm trying to be realistic about this - I had the right to do something that, hopefully, is going to lead to a real improvement in my health. It wasn't selfish to do this, even if I don't get the outcome I wanted. Or, if it is selfish, only in a good way. This is one of the things I have decided to work on, about myself - that I don't cut myself enough slack about important things. Yes, it is vital to be someone that my family and friends can depend on, and it stinks when my health issues get in the way of that. But that doesn't mean it's not something that people should try to understand, and that doesn't mean it's something I should feel badly for (at least, not excessively so). So, I'm working on that. It is much harder done than said.
Item #3 I would just like to state, for the record, that I am through thinking about my weight. Because I ate nothing but soup broth and mashed potatoes, slush, bananas, and jello for, let's say 27 days, discounting the first two days (when I could only eat slush), and the last four (when I've been expanding into other, actually needs to be chewed types of food). And I think I gained weight, to be honest with you. So if I can't lose weight on three weeks of vegetarian, non-chewable mush, then I'm just not going to lose weight. So I better figure out how to like the size I am right now.
I think that's about it for now, before this post turns into a novel. I'll be back pretty soon (certainly more frequently now), and we'll talk about something completely different, won't that be nice? Please also know that I am, slowly but surely, catching up with my Google Reader (yay: The Collective is back in my Google Reader!), but it's taking me a while. If you have clicked through a new comment of mine on an older post of yours, welcome! Sorry to be so late to the party! I'm getting there.
I managed to catch, in these 33 days, at least one sinus infection (either inadequately quashed the first time and capable of rebounding, or a party-bug who invited a friend over; impossible to tell) and a case of thrush that made me want to rip my tongue out and use sandpaper on it. Thankfully, the thrush has cleared up, and the infection(s) are on their way out as well. (She says, trying not to jinx herself this time.)
So I'm going to talk a little bit about a couple of things now, and I'm going to warn you that the very first thing I'm going to talk about is exceedingly gross. As in "Are you really about to tell the internet that...?" level gross. But here is where I talk about things that I can't discuss in real life/make my family understand, and so, you lovelies have a bit of forewarning that you might want to skip item #1.
Item #1: Every week since my surgery (and twice the first week immediately following the surgery), I have had to go to the ENT surgeon for a check in. During these check ins, he pokes at my face a little bit, looks up my nose, down my throat and in my ears - in short, all the things you expect the ENT to do. And then things take a dramatic turn for the worse, and I break out in the kind of flop sweat usually only experienced when the dentist turns around with that huge needle in his hand. Luckily, the ENT does not start poking me with needles, but, rather unluckily, he instead decides that now is the time to insert things up my nose.
UP my NOSE, people. My very tender, and much abused nose. First, he sprays a little numbing stuff, which is about as useful as tap water would be, and then he uses a long thin strip of cotton ball, doused in decongestants, and his looooooong metal pliers, and he stuffs the cotton ball up my nostrils. He leaves it there for a minute and disappears behind me, while the medicinal tasting decongestant drips out of my nose and down the back of my throat.
The first time this happened, I was a little bit shocked: I assumed that when he said he was going to use a decongestant, that he meant a nasal spray. And that was going to be bad enough, because my nose was already swollen and sore, and now he was going to spray stuff up there? Bah. So I was sitting there all shocked and drippy, waiting for him to take this gross stuff out of my nose when, all of the sudden, there's an unexpected noise behind me. A mechanical noise, a little hum that is entirely out of place. And then things go way downhill, way too fast.
Because the mechanical humming noise is coming from some sort of vacuum, not unlike an elongated, metal version of the doohickey that the dentist uses to suck spit out of your mouth during a cleaning, and the ENT is telling me that this damn thing is going up my nose to "clean out what's left."
Are you freaking kidding me??? This was not mentioned during the numerous pre-op discussions we had about surgery and aftercare; This was not mentioned in my aftercare instructions; This was not mentioned anytime during the previous 15 minutes I've been sitting here talking to you: NOW you are telling me, as you approach me with that goddamn thing, that you're going to suck stuff out of my sinuses? I am so not on board with this.
But, what choice did I have, really, since this is part of the after care - I'm going to go through all the pain of the surgery, and then have it be a waste because I didn't do the necessary follow up? I don't think so. How bad can it be, really?
Oh, it can be really, really bad. *I should put a disclaimer here that this was my experience, and the whole sucking out of sinuses might not be a big deal for other people: I can't really say. Except for another guy who was having the same surgery/procedure done on my first post-op visit who yelled really loudly from inside the room while I was waiting for my appointment, so he obviously didn't enjoy it either (if only I had known why he was yelling before I went in...). I can only say, that for me? It was a gigantic deal. Not just because I was already in a lot of pain, although I was, but because, to me, it feels like drowning.
The sensation of not being able to breathe through your noise is bad enough, but you add in the forced pressure of that little vacuum, and the fact that you can feel it not just in your sinuses and nose, but in the back of your throat? And it adds up to a completely overwhelming and painful experience. I cried, the first time, and (Mum told me later) was also, from the waiting room, quite audible in my distress. I cried the second and third times too, and I'm not even the tiniest bit embarrassed by that fact. (It was a little bit less traumatic the last two times, thankfully.)
It hurt, and I am already hurting enough.
But it was the panic that it caused me that was most distressing... the doctor actually told me to "breathe through your mouth" (as if I had any other options) "or you're going to have a panic attack". That is because you are cutting off my air supply, and my body, for some reason thinks this is a bad idea. He also appeared shocked that I would find this so upsetting, only adding to my impression of him as completely out of touch with reality ("7-10 days and you'll be good as new!"; "No patient has ever had a sinus infection so soon, post-op: are you sure that's what it is?"; "You should chew more gum to help stretch those muscles, did I forget to tell you that?").
The only good news is that I now don't have to go back for another month, baring additional issues, and that time, he may not even have to use the vacuum. Fingers crossed! End of totally disgusting and barbaric Item #1.
Item #2 - I have missed out on a lot of things in the course of the 33 days: a cousin's wedding (which apparently included much celebrating), my birthday, a college reunion I wasn't going to go to anyways (but I would've liked to make the my-girls dinner pre-party), Lil Girl's end of school celebration, No Longer Youngest Nephew's school report (which I have never been invited to before :( ), and more than a bit of family drama that I'm still trying to catch up with. Everybody in my family had issues during this period, and I feel like I am a page or two behind on the stories, which is a feeling I truly hate. I also feel like this lag in my understanding of things has caused new drama, which I have to figure out how to fix, but can't till my brain is back at full power, which sucks. This is one of the things I tried to factor into my decision to have the surgery - knowing I would be so far behind/out of the loop, and trying to make it be ok, but I absolutely hate not being there for people when they need me (and we can talk about why I don't expect people to show up for me when I need them some other time, thank you very much). It has been hard, playing catch up, apologizing for the gaps and lapses, the gaffs and digs I've delivered unknowingly. Or trying to, at least.
But at the same time, I'm trying to be realistic about this - I had the right to do something that, hopefully, is going to lead to a real improvement in my health. It wasn't selfish to do this, even if I don't get the outcome I wanted. Or, if it is selfish, only in a good way. This is one of the things I have decided to work on, about myself - that I don't cut myself enough slack about important things. Yes, it is vital to be someone that my family and friends can depend on, and it stinks when my health issues get in the way of that. But that doesn't mean it's not something that people should try to understand, and that doesn't mean it's something I should feel badly for (at least, not excessively so). So, I'm working on that. It is much harder done than said.
Item #3 I would just like to state, for the record, that I am through thinking about my weight. Because I ate nothing but soup broth and mashed potatoes, slush, bananas, and jello for, let's say 27 days, discounting the first two days (when I could only eat slush), and the last four (when I've been expanding into other, actually needs to be chewed types of food). And I think I gained weight, to be honest with you. So if I can't lose weight on three weeks of vegetarian, non-chewable mush, then I'm just not going to lose weight. So I better figure out how to like the size I am right now.
I think that's about it for now, before this post turns into a novel. I'll be back pretty soon (certainly more frequently now), and we'll talk about something completely different, won't that be nice? Please also know that I am, slowly but surely, catching up with my Google Reader (yay: The Collective is back in my Google Reader!), but it's taking me a while. If you have clicked through a new comment of mine on an older post of yours, welcome! Sorry to be so late to the party! I'm getting there.
Friday, May 14, 2010
So I'm sitting here
at quarter to three in the morning, after playing Family Feud on Facebook, and browsing on Etsy long enough to add a whole new page of favorite things, and typing up two long overdue, rambly and probably non-sensical e-mails, wondering what the hell I am going to do.
This surgery is on Friday, and - as of today - that is still a go. The liver issues seem to be under control (2nd set of liver tests = no problem, just like I suspected they would be), but I've got another round to go before I get the all-clear.
I do not like to be in limbo, and yet I seem to be spending an awful lot of time there.
So I am assuming that I am having the surgery on Friday, as in a week from today, and holy crap that is soon... which means I now have to figure out all of the things I need to do before Friday, in order to not have to worry about them after the surgery.
I've been stockpiling books (which I do anyways), and magazines that take little thought or effort. I've got a week or two worth of funny shows on my DVR that I specifically didn't watch, and a Netflix queue (instant and through mail) as long as my to-do list. I'm going to fill out all the paperwork for anything that might be due in week or two following the surgery - bills to be paid, mail to send, etc - today, and I'm saving the major clean up for Thursday, because I know I'll just mess everything up again anyways if I do it now.
I wanted to have a sleepover this weekend with No Longer Youngest Nephew, partly because I don't know when I'll be up to it again, and partly because I knew he'd be a great distraction, but it turns out he's got a Sunday baseball game, so (since I don't drive), that fell through. I've also invited College Roommate/Best Friend to come and visit, but she's usually weekend booked all the way through the end of the school year, so I'm not holding out much hope there either.
But I think if it's just me sitting here, things could get pretty dicey pretty quickly, so I'm just going to think of LOTS of things that need to be done between now and then, so I don't have time to obsess. Because obsessing is something I can be very good at, and it could lead to chickening out, which I am determined not to do, so, therefore (and, Off Topic: I really think the keyboard ought to have a Therefore symbol - maybe instead of the #... those three little circles in the shape of a triangle that came in so handy in freakin geometry, I could use those on my keyboard, just saying): Keeping Busy.
On the one hand, this is relatively minor surgery.
On the other hand, this is my body, which never reacts as the doctors say it 'should', and my face, which is already in enough pain, and myself, which also has enough pain and exhaustion to deal with, thank you very much... so this is the hand that will lead to the obsessing.
I'm trying to focus on that first hand instead. And this magical third hand that appeared out of nowhere to remind me that I will be under anesthesia, which means I will get some SLEEP. Real, actual, knock-me-out for a few hours sleep. The kind that my body has completely forgotten how to manufacture, and I will take whatever I can get. Artificially induced or not, I'm going to focus on the fact that a week from today, I will be taking a NAP. I know I cannot articulate exactly how awesome that will be, but let's just say that it almost makes me forget that they're going to be cutting out pieces of my body and sticking metal hooks up my nose. Almost.
In the meantime, I've got the itchy scratchies, but no actual energy to work them off, so I hope you'll excuse a few rambling blog posts, particularly if they're just serving as poor reminders to myself that this is not something to get all wimpy about.
Or about how I played Ms Pacman for the better part of two hours yesterday, and had over a million points because this was an online fake version of the game and when you ate the little 'turn the ghosts blue' pellets, the ghosts never changed back to their original colors unless you ate them, thus giving you the run of the board for ridiculously long periods of time. Ms. Pacman Champion, right here.
This surgery is on Friday, and - as of today - that is still a go. The liver issues seem to be under control (2nd set of liver tests = no problem, just like I suspected they would be), but I've got another round to go before I get the all-clear.
I do not like to be in limbo, and yet I seem to be spending an awful lot of time there.
So I am assuming that I am having the surgery on Friday, as in a week from today, and holy crap that is soon... which means I now have to figure out all of the things I need to do before Friday, in order to not have to worry about them after the surgery.
I've been stockpiling books (which I do anyways), and magazines that take little thought or effort. I've got a week or two worth of funny shows on my DVR that I specifically didn't watch, and a Netflix queue (instant and through mail) as long as my to-do list. I'm going to fill out all the paperwork for anything that might be due in week or two following the surgery - bills to be paid, mail to send, etc - today, and I'm saving the major clean up for Thursday, because I know I'll just mess everything up again anyways if I do it now.
I wanted to have a sleepover this weekend with No Longer Youngest Nephew, partly because I don't know when I'll be up to it again, and partly because I knew he'd be a great distraction, but it turns out he's got a Sunday baseball game, so (since I don't drive), that fell through. I've also invited College Roommate/Best Friend to come and visit, but she's usually weekend booked all the way through the end of the school year, so I'm not holding out much hope there either.
But I think if it's just me sitting here, things could get pretty dicey pretty quickly, so I'm just going to think of LOTS of things that need to be done between now and then, so I don't have time to obsess. Because obsessing is something I can be very good at, and it could lead to chickening out, which I am determined not to do, so, therefore (and, Off Topic: I really think the keyboard ought to have a Therefore symbol - maybe instead of the #... those three little circles in the shape of a triangle that came in so handy in freakin geometry, I could use those on my keyboard, just saying): Keeping Busy.
On the one hand, this is relatively minor surgery.
On the other hand, this is my body, which never reacts as the doctors say it 'should', and my face, which is already in enough pain, and myself, which also has enough pain and exhaustion to deal with, thank you very much... so this is the hand that will lead to the obsessing.
I'm trying to focus on that first hand instead. And this magical third hand that appeared out of nowhere to remind me that I will be under anesthesia, which means I will get some SLEEP. Real, actual, knock-me-out for a few hours sleep. The kind that my body has completely forgotten how to manufacture, and I will take whatever I can get. Artificially induced or not, I'm going to focus on the fact that a week from today, I will be taking a NAP. I know I cannot articulate exactly how awesome that will be, but let's just say that it almost makes me forget that they're going to be cutting out pieces of my body and sticking metal hooks up my nose. Almost.
In the meantime, I've got the itchy scratchies, but no actual energy to work them off, so I hope you'll excuse a few rambling blog posts, particularly if they're just serving as poor reminders to myself that this is not something to get all wimpy about.
Or about how I played Ms Pacman for the better part of two hours yesterday, and had over a million points because this was an online fake version of the game and when you ate the little 'turn the ghosts blue' pellets, the ghosts never changed back to their original colors unless you ate them, thus giving you the run of the board for ridiculously long periods of time. Ms. Pacman Champion, right here.
Friday, March 26, 2010
You know what I am really good at?
Drafts. I rock at first drafts; love second drafts, have been known to have as many as 16 drafts of something before I am even close to happy with it. I was that annoying kid at school who would enjoy the peer editing conferences, knowing that I would get another chance to fix all the things that needed to be fixed. I have about 7200 of them sitting around right now: A first draft of a children's book I started writing 12 years ago; a hilariously poor batch of poems. A first draft of a letter to an old friend, two or three drafts of outrage (or, less likely, praise) to my senators; one for my aunt, sitting around waiting for me to add pictures. Hundreds of posts sitting in the draft folder. Probably the same number of e-mails sitting in that drafts folder. I go through drafts and drafts and drafts of every To Do list - with a lot more carry over and a lot less crossing off than I would like, unfortunately.
The only kind of draft I am not exceptionally good at? Final drafts.
And do you know that it has taken me the better part of my 30 years on the planet to make the connection between my labor intensive and research rich drafting process and plain old procrastination?
"But I'm working on it!" I can say to myself - "I'm re-thinking it, I'm re-working it, it's still percolating, it's not all the way there yet, not Done with a capital D Done." Right, and it's often true that things need more tweaking. But there comes a point where you are just holding on to something, just keeping it your control for as long as possible. At some point, though?
You need to finish things. You need to make the decision, write "The End", cross everything off the list (or decide it's not worth completing and toss it), stick it in the mail and sent it off.
One of the things that I've crossed off my list this week is deciding to have the sinus surgery. After my appointments last week, I did a bunch of research, I wrote about it here (once or twice), I asked for opinions and spent hours talking to someone I (only sort of) know who had a similar procedure. I wrote pro/con lists (yes: I actually do this), and argued with myself for as long as I could. Then I procrastinated a little bit because the answer I had wound up with was not the answer I wanted to wind up with. And then I passed in my final draft, and told the doctor to sign me up.
I'm still nervous, and I don't like that I have to have it, but it's pretty clear that I have to have it. I still don't know when, but that's the doctor's fault not mine. (His surgical nurse is supposed to get back to me next week with a date.) The good news is that my case is severe enough to require a special kind of sinus surgery, which can be done on an outpatient basis (Do not even ask me: the less severe surgery is inpatient, mine is all laparoscopic and laser-y, and so then I get to go home on the same day. Yay.) Also on the good news side of things is that the surgical nurse seemed to understand that liquid pain medication will be very important (bc I'm also getting my tonsils out. Did I forget to mention that? Yeah, they were what started this whole damn thing in the first place.) and was very clear on the fact that, since I won't be able to take my regular pain meds for at least a day or two, then I'm going to need alternatives.
So: final decision made. Now if I could just get the damn computer out of draft mode (Current draft title: "You cannot afford a Mac: choose again"), then I'd be all set.
The only kind of draft I am not exceptionally good at? Final drafts.
And do you know that it has taken me the better part of my 30 years on the planet to make the connection between my labor intensive and research rich drafting process and plain old procrastination?
"But I'm working on it!" I can say to myself - "I'm re-thinking it, I'm re-working it, it's still percolating, it's not all the way there yet, not Done with a capital D Done." Right, and it's often true that things need more tweaking. But there comes a point where you are just holding on to something, just keeping it your control for as long as possible. At some point, though?
You need to finish things. You need to make the decision, write "The End", cross everything off the list (or decide it's not worth completing and toss it), stick it in the mail and sent it off.
One of the things that I've crossed off my list this week is deciding to have the sinus surgery. After my appointments last week, I did a bunch of research, I wrote about it here (once or twice), I asked for opinions and spent hours talking to someone I (only sort of) know who had a similar procedure. I wrote pro/con lists (yes: I actually do this), and argued with myself for as long as I could. Then I procrastinated a little bit because the answer I had wound up with was not the answer I wanted to wind up with. And then I passed in my final draft, and told the doctor to sign me up.
I'm still nervous, and I don't like that I have to have it, but it's pretty clear that I have to have it. I still don't know when, but that's the doctor's fault not mine. (His surgical nurse is supposed to get back to me next week with a date.) The good news is that my case is severe enough to require a special kind of sinus surgery, which can be done on an outpatient basis (Do not even ask me: the less severe surgery is inpatient, mine is all laparoscopic and laser-y, and so then I get to go home on the same day. Yay.) Also on the good news side of things is that the surgical nurse seemed to understand that liquid pain medication will be very important (bc I'm also getting my tonsils out. Did I forget to mention that? Yeah, they were what started this whole damn thing in the first place.) and was very clear on the fact that, since I won't be able to take my regular pain meds for at least a day or two, then I'm going to need alternatives.
So: final decision made. Now if I could just get the damn computer out of draft mode (Current draft title: "You cannot afford a Mac: choose again"), then I'd be all set.
Wednesday, March 24, 2010
What I would say, if I were brave enough
Dear Facebook Friends,
I am genuinely glad that you are expecting your (insert number here) child. You are my friend, and I'm so glad for you (especially those of you that have been TTC for quite a while). I will happily attend baby showers and baptisms, and am already shopping for a gift to take to the hospital. But I am also sickeningly jealous, because the only thing I want more than getting well is a family of my own. So if you decide to complain about a)the gender of your baby or b)the fact that you are a little more tired than you usually are, you'll have to excuse me if I don't join in on the pity party. I know you have a right to how you feel, but since right now I feel like I'd rather be you on your worst day than me on my best, I'm just going to ignore your posts for a while and come back for the big announcement.
Kind of Sorry About This, and with Lots of Love, NTE
------------------------------------------------------------------------------------
Dear Facebook Friends,
I am glad you get to spend your time playing games that entertain you such as Farmville, MafiaWars, Sorority House, Godfather, Wizard World, ZooPets, etc. For myself, however, I know that if I were to join you in playing any of these games, it would not go well. I have a limited amount of energy as it is, and if I get sucked into playing a highly addictive game (and I can see by the number of posts you have each day, these games are highly addictive), then I would get less than nothing accomplished. (Evidence Bejeweled Blast, and the fact that I had to uninstall it from my page, lest I get sucked in again.) So please, please stop asking me to join yourcult community: even if I liked it, it would be bad for me.
Love, NTE
--------------------------------------------------------------------------------
Dear people I used to know and now only sort of know because we are "friends" on Facebook,
Perhaps you are unaware of my particular life circumstances, and that is fine: I understand that we haven't been close in the 10-15 years since we've last seen each other, and so how were you to know? But if I post something about how I am feeling, or the status of my 1200th doctor's appointment of the week, or if you happen to see a picture of current-ish me (of which there should be none: although sometimes my siblings sneak them in when I am not vigilant enough) and notice that I am in a wheelchair, it is not an appropriate response for you to say things like "Damn, what happened to you?" or "Really, you're that sick? I would kill myself if that happened to me." It's called common sense, people. Rudeness is still rudeness, even if you're typing it.
Whatever, NTE
--------------------------------------------------------------------------------
Dear Facebook Friends who are too cutesy,
If I have to hear how your and your fiance/husband/boyfriend are head over heels, lovey dovey, to the end of the earth and back, never been in love like this before in LOVE, one more time, I might unfriend you. Just warning you. You have a right to be happy, but I have a right not to roll my eyes every time I open up my homepage, too. I am actually glad that you are in a happy and stable relationship, but if you called each other those cutesy names in real life, in public, your friends would laugh at you and walk away. So maybe you should just keep it to the private messages, and leave the "smooshy" "bestie" "Daddy" (ick) & "Snookums" (Really? Unironically?) for when you're actually seeing each other, so that I don't have to read it. Deal?
Love, NTE (See how I could say that without drawing 17 hearts in a row? You could try that too!)
----------------------------------------------------------------------------------
Dear Facebook addicts who tell me I don't update my status enough or think I should get a Twitter,
Honestly? Most weeks, if I updated my status daily/tweeted it would look like this:
Ow.
Ow.
Ow, plus Lil Girl is here.
Ow, am recuperating from Lil Girl.
Look, Ow & now Lil Girl is here again.
Ow, and now I have another doctor's appointment that I don't want to go to and will probably be a big waste of time.
OUCH. Doctor's appointment was a painful bust, but now I have pill number 756 to try, so we'll see if that works.
LOOK A PURPLE UNICORN.
Pill Number 756 gave me hives. And hallucinations. Am not taking it anymore.
Ow.
Actually, that's a lot more interesting than my normal week - purple unicorns are few and far between here (hives, unfortunately, are much more common). I realize that since you are working, you might have something new to talk about all the time, but for me, my life is a lot of same shit, different day. So, you should be glad that I only post things when they're actually interesting. Ow loses its meaning, after awhile.
Thanks for thinking I'm interesting, even when I'm actually not, NTE
---------------------------------------------------------------------------------
Dear Family Members/Friends from elementary school,
You do know I have lots of embarrassing pictures of you, right? And that I am consciously choosing not to post them? Ok, so maybe you don't want to get on my bad side, is all I'm saying.
Really.
Love, NTE
I am genuinely glad that you are expecting your (insert number here) child. You are my friend, and I'm so glad for you (especially those of you that have been TTC for quite a while). I will happily attend baby showers and baptisms, and am already shopping for a gift to take to the hospital. But I am also sickeningly jealous, because the only thing I want more than getting well is a family of my own. So if you decide to complain about a)the gender of your baby or b)the fact that you are a little more tired than you usually are, you'll have to excuse me if I don't join in on the pity party. I know you have a right to how you feel, but since right now I feel like I'd rather be you on your worst day than me on my best, I'm just going to ignore your posts for a while and come back for the big announcement.
Kind of Sorry About This, and with Lots of Love, NTE
------------------------------------------------------------------------------------
Dear Facebook Friends,
I am glad you get to spend your time playing games that entertain you such as Farmville, MafiaWars, Sorority House, Godfather, Wizard World, ZooPets, etc. For myself, however, I know that if I were to join you in playing any of these games, it would not go well. I have a limited amount of energy as it is, and if I get sucked into playing a highly addictive game (and I can see by the number of posts you have each day, these games are highly addictive), then I would get less than nothing accomplished. (Evidence Bejeweled Blast, and the fact that I had to uninstall it from my page, lest I get sucked in again.) So please, please stop asking me to join your
Love, NTE
--------------------------------------------------------------------------------
Dear people I used to know and now only sort of know because we are "friends" on Facebook,
Perhaps you are unaware of my particular life circumstances, and that is fine: I understand that we haven't been close in the 10-15 years since we've last seen each other, and so how were you to know? But if I post something about how I am feeling, or the status of my 1200th doctor's appointment of the week, or if you happen to see a picture of current-ish me (of which there should be none: although sometimes my siblings sneak them in when I am not vigilant enough) and notice that I am in a wheelchair, it is not an appropriate response for you to say things like "Damn, what happened to you?" or "Really, you're that sick? I would kill myself if that happened to me." It's called common sense, people. Rudeness is still rudeness, even if you're typing it.
Whatever, NTE
--------------------------------------------------------------------------------
Dear Facebook Friends who are too cutesy,
If I have to hear how your and your fiance/husband/boyfriend are head over heels, lovey dovey, to the end of the earth and back, never been in love like this before in LOVE, one more time, I might unfriend you. Just warning you. You have a right to be happy, but I have a right not to roll my eyes every time I open up my homepage, too. I am actually glad that you are in a happy and stable relationship, but if you called each other those cutesy names in real life, in public, your friends would laugh at you and walk away. So maybe you should just keep it to the private messages, and leave the "smooshy" "bestie" "Daddy" (ick) & "Snookums" (Really? Unironically?) for when you're actually seeing each other, so that I don't have to read it. Deal?
Love, NTE (See how I could say that without drawing 17 hearts in a row? You could try that too!)
----------------------------------------------------------------------------------
Dear Facebook addicts who tell me I don't update my status enough or think I should get a Twitter,
Honestly? Most weeks, if I updated my status daily/tweeted it would look like this:
Ow.
Ow.
Ow, plus Lil Girl is here.
Ow, am recuperating from Lil Girl.
Look, Ow & now Lil Girl is here again.
Ow, and now I have another doctor's appointment that I don't want to go to and will probably be a big waste of time.
OUCH. Doctor's appointment was a painful bust, but now I have pill number 756 to try, so we'll see if that works.
LOOK A PURPLE UNICORN.
Pill Number 756 gave me hives. And hallucinations. Am not taking it anymore.
Ow.
Actually, that's a lot more interesting than my normal week - purple unicorns are few and far between here (hives, unfortunately, are much more common). I realize that since you are working, you might have something new to talk about all the time, but for me, my life is a lot of same shit, different day. So, you should be glad that I only post things when they're actually interesting. Ow loses its meaning, after awhile.
Thanks for thinking I'm interesting, even when I'm actually not, NTE
---------------------------------------------------------------------------------
Dear Family Members/Friends from elementary school,
You do know I have lots of embarrassing pictures of you, right? And that I am consciously choosing not to post them? Ok, so maybe you don't want to get on my bad side, is all I'm saying.
Really.
Love, NTE
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