Howdy folks ~ I know I've been SUPER lax at writing here, but I'm starting to feel like maybe that might need to change again? I don't even know if people still read blogs, but I'm starting to feel like maybe I need to write one, because without this outlet, my mind is a jumbled up mess.
I haven't quite figured out what form this writing might take - I know I'm going to set a schedule, and try to keep it; I know I've got to write about the millions of things that are happening in my life, and in the world, without somehow turning into a giant rage monster (Honestly, hulking out often does seem appropriate, especially on Facebook, these days); I know I've got to start writing about my family and my new place in it, in a way that helps it make sense to me - and hopefully is interesting to the rest of you. I just know I have to start writing again, and I'm sick of giving myself reasons why blogging isn't the way I should do it.
Maybe it's not... maybe I'll write for a while and decide: Yeah, nobody's reading this anymore, and I'm not enjoying writing it anymore, and it's time to close the shop. Maybe. But I feel like that won't happen. I miss writing here, in a deeply personal way... I miss all of the commenters and all of the nonsense, and all of the anticipation of saying something and knowing someone else would be reading it, would maybe have some input into what was going on. (Y'all are still the best, I know that, regardless of if I'm here to blab with or not.)
So: Hi. Happy 2018. Can we agree that the world is a scary place and having someplace to talk about it might be a good move? And that even though life is ridiculous and busy and hectic and confusing, taking a few minutes (or an hour or two or three) to talk about stuff with other people is not just a good idea, but a necessary one?
Ok, good. Glad we're on the same page.
Welcome back. I missed you.
Showing posts with label Here we go. Show all posts
Showing posts with label Here we go. Show all posts
Monday, January 29, 2018
Thursday, January 02, 2014
This year's word*
*This year will be brought to you by the word "Share" - alternate, very Sesame Street-styled post title.
As always, I gave a lot of thought to what I want this year to be and provide, the benefits I'm hoping for, and the weaknesses I'd like to overcome. I actually came up with this while writing my last post of last year, as I was going through my list of moments that mattered most to me, and trying to come up with ways to create that feeling as much as possible this year.
What it came down to, really, was that a lot of those moments were spent with the people I care about, or were about me being open to new things/people, or about embracing parts of myself that I have (in the past) tried to ignore or downplay. So this year's theme word is going to be sharing.
Sharing the parts of me I generally keep well hidden - including being more honest. Both in general - I'm not some huge liar or anything, but I tend to keep things fuzzy and broad when I'm talking about myself - and, more specifically, about my health. Which, for me, will mean answering more truthfully when people that care ask me how I am doing. My stock answer "I'm doing" is both a family joke and technically true, but if I get the sense that the person who asks actually cares and actively wants to know, I'm going to attempt to be more open about how I'm actually feeling. There are two keys here - 1) Only giving real information people I know aren't just asking as filler or who want the broad strokes answer and 2) Finding some sort of middle ground between smoothing things over and trying to accurately explain to people who love me how much I am truly suffering. After more than one missed opportunity last year, and a few run ins with family members saying things like "I don't even know what you're diagnosed with" or "Is that new?" about a serious heart problem I've had since I was a teenager, I feel like I'm doing myself a real disservice with the standard glib answer. So, where and when it is possible, I'm going to share this piece of myself a little bit more clearly.
Sharing means being open to new experiences and people and plans - both offline and on. I'm hoping to attend my first Con this summer (Boston Comic-Con 2014); I want to make plans with each of my siblings and nephews and niece for stuff we've never done before or stuff we haven't done in a really long time (and maybe get a portrait done for my mother, who's been asking forever); I'm going to be moving somewhere, somehow this year, and I've got to just embrace not knowing, and then wherever we wind up going; I've got to finally nail down a new treatment plan with Zach, even though I've been balking for a while (because all of the options are scary); I want to put myself in new positions & embrace being curious.
Sharing means taking more opportunities to create things, taking the things I create more seriously, and overcoming some of my fears about letting other people see/experience/know about those things. (It does not mean I'm telling my family about my blog, because Hell No.) But it might mean joining new forums, meeting up with like-minded creative people more often in real life, self-promoting a bit, or finally finishing some of the seventeen projects I've got in some form of unfinished. It definitely means taking more pictures, writing more words, reading more books, playing more games, loving more people, embracing my inner geekess and librarian and letter-writer.
Sharing means feeling feelings and not hiding them. Quitting the passive-aggressive bullshit and standing up for myself and others in more clear terms. More social activism - both online and in real life, if possible - and incorporating it into my own life better. Making sure my values are the things I'm living by, not just the things I'm hoping to live by.
Sharing is going to mean letting other people share more, being more open to other people's feelings and perspectives and lives with less judgment on my part. This is already something I've been working on, but I need to keep at it... I want to be the person people come to, and for some people, I am. I am very proud of that, and I value those relationships. I also know I can't be that person for everybody in my life, but there are still some steps I can take to foster better relationships, and those I can take. This is going to be a rough year for my family, and some of them don't even realize it yet. I want to be as available as I can be - without getting taken advantage of (!!!) - because you're there for the people who matter to you, as much as you can be.
Sharing means more friend time, more chances for new friends, more linking and liking. It means embracing sadness but not the isolation it thrives in; having a good day and then telling people about the flare it caused and how that puts a damper on the happy; it means spreading my self-care strategies around so they can benefit other people.
Sharing is less hiding and more showing up; less worrying by myself and more accepting helping hands; paying compliments when I think them instead of hoarding them for later; keeping dollar bills and packs of gum in the car for people who beg on street corners; letting things I don't need anymore go out into the world where they can be of use to someone else.
Sharing is ...
It's just showing up more. And opening up more. And hoping that the world - or at least my little corner of it - follows suit.
And it's wishing all of you the happiest 2014 that there can be. Whatever comes, know if you want to talk about it, I'm here to listen. And know that you all play a large part in saving my sanity, if not my life, because I know you're out there listening too.
Ok 2014: Be nice to us.
As always, I gave a lot of thought to what I want this year to be and provide, the benefits I'm hoping for, and the weaknesses I'd like to overcome. I actually came up with this while writing my last post of last year, as I was going through my list of moments that mattered most to me, and trying to come up with ways to create that feeling as much as possible this year.
What it came down to, really, was that a lot of those moments were spent with the people I care about, or were about me being open to new things/people, or about embracing parts of myself that I have (in the past) tried to ignore or downplay. So this year's theme word is going to be sharing.
Sharing the parts of me I generally keep well hidden - including being more honest. Both in general - I'm not some huge liar or anything, but I tend to keep things fuzzy and broad when I'm talking about myself - and, more specifically, about my health. Which, for me, will mean answering more truthfully when people that care ask me how I am doing. My stock answer "I'm doing" is both a family joke and technically true, but if I get the sense that the person who asks actually cares and actively wants to know, I'm going to attempt to be more open about how I'm actually feeling. There are two keys here - 1) Only giving real information people I know aren't just asking as filler or who want the broad strokes answer and 2) Finding some sort of middle ground between smoothing things over and trying to accurately explain to people who love me how much I am truly suffering. After more than one missed opportunity last year, and a few run ins with family members saying things like "I don't even know what you're diagnosed with" or "Is that new?" about a serious heart problem I've had since I was a teenager, I feel like I'm doing myself a real disservice with the standard glib answer. So, where and when it is possible, I'm going to share this piece of myself a little bit more clearly.
Sharing means being open to new experiences and people and plans - both offline and on. I'm hoping to attend my first Con this summer (Boston Comic-Con 2014); I want to make plans with each of my siblings and nephews and niece for stuff we've never done before or stuff we haven't done in a really long time (and maybe get a portrait done for my mother, who's been asking forever); I'm going to be moving somewhere, somehow this year, and I've got to just embrace not knowing, and then wherever we wind up going; I've got to finally nail down a new treatment plan with Zach, even though I've been balking for a while (because all of the options are scary); I want to put myself in new positions & embrace being curious.
Sharing means taking more opportunities to create things, taking the things I create more seriously, and overcoming some of my fears about letting other people see/experience/know about those things. (It does not mean I'm telling my family about my blog, because Hell No.) But it might mean joining new forums, meeting up with like-minded creative people more often in real life, self-promoting a bit, or finally finishing some of the seventeen projects I've got in some form of unfinished. It definitely means taking more pictures, writing more words, reading more books, playing more games, loving more people, embracing my inner geekess and librarian and letter-writer.
Sharing means feeling feelings and not hiding them. Quitting the passive-aggressive bullshit and standing up for myself and others in more clear terms. More social activism - both online and in real life, if possible - and incorporating it into my own life better. Making sure my values are the things I'm living by, not just the things I'm hoping to live by.
Sharing is going to mean letting other people share more, being more open to other people's feelings and perspectives and lives with less judgment on my part. This is already something I've been working on, but I need to keep at it... I want to be the person people come to, and for some people, I am. I am very proud of that, and I value those relationships. I also know I can't be that person for everybody in my life, but there are still some steps I can take to foster better relationships, and those I can take. This is going to be a rough year for my family, and some of them don't even realize it yet. I want to be as available as I can be - without getting taken advantage of (!!!) - because you're there for the people who matter to you, as much as you can be.
Sharing means more friend time, more chances for new friends, more linking and liking. It means embracing sadness but not the isolation it thrives in; having a good day and then telling people about the flare it caused and how that puts a damper on the happy; it means spreading my self-care strategies around so they can benefit other people.
Sharing is less hiding and more showing up; less worrying by myself and more accepting helping hands; paying compliments when I think them instead of hoarding them for later; keeping dollar bills and packs of gum in the car for people who beg on street corners; letting things I don't need anymore go out into the world where they can be of use to someone else.
Sharing is ...
It's just showing up more. And opening up more. And hoping that the world - or at least my little corner of it - follows suit.
And it's wishing all of you the happiest 2014 that there can be. Whatever comes, know if you want to talk about it, I'm here to listen. And know that you all play a large part in saving my sanity, if not my life, because I know you're out there listening too.
Ok 2014: Be nice to us.
Tuesday, November 05, 2013
Zoinks!
The current funniest thing about my work in progress is that I have no idea how 12 year old girls curse. And my main character, as well as her former best-friend/current nemesis, are both twelve year old girls who are provided with many opportunities to curse (even though we're only about 4 chapters into the story).
So, instead of swearing outright - which, probably? is what 12 year-olds do? - I mean I realize my 13-year-old nephew probably has a truck driver's mouth around his friends, but here I must give my standard "I don't really like cursing, and was a total goodie two shoes as a child, and probably didn't curse in my head, let alone out loud until I was graduating from high school" explanation*.
Either way, for right now, in the NaNoWriMo flurry of words, I'm inserting different ridiculous made up curses, like "Shnikies" and "Zoinks."
So, basically, my two main characters sound like they are directly out of a Scooby Doo cartoon. Eventually, when the time for editing comes, this will become a problem. Right now? It's making the re-reads pretty freaking hilarious.
*If you have any opinions on what curses are popular with the tween-set, please, feel free to share them in the comments.
So, instead of swearing outright - which, probably? is what 12 year-olds do? - I mean I realize my 13-year-old nephew probably has a truck driver's mouth around his friends, but here I must give my standard "I don't really like cursing, and was a total goodie two shoes as a child, and probably didn't curse in my head, let alone out loud until I was graduating from high school" explanation*.
Either way, for right now, in the NaNoWriMo flurry of words, I'm inserting different ridiculous made up curses, like "Shnikies" and "Zoinks."
So, basically, my two main characters sound like they are directly out of a Scooby Doo cartoon. Eventually, when the time for editing comes, this will become a problem. Right now? It's making the re-reads pretty freaking hilarious.
*If you have any opinions on what curses are popular with the tween-set, please, feel free to share them in the comments.
Monday, November 04, 2013
Taking my own advice
from yesterday, and trying to get ahead of the curve here. Because today I've got a 24-hr Halter test so I've got to go to the hospital and get all hooked up, and I don't know how much energy I'm going to have tonight, so here's today's post.
----
In the interest of keeping things moving, and for all of us Na/No/Blo-ers, a little writerly wisdom:
Don't t forget to tell some truths today!
----
In the interest of keeping things moving, and for all of us Na/No/Blo-ers, a little writerly wisdom:
“What I have since learned is that writing is this incredible gift into yourself– it is one surefire way to discover what it is you know, what you think, how you want to be in the world. Writing can be the ultimate truth teller.”Rosie Molinary: Welcome Home, You WIll Always Be Safe Here, Dec 2011
Don't t forget to tell some truths today!
Sunday, November 03, 2013
Just a little thought -
Third day, and I'm sharing a tip I've seen a few other places, but I've got a different reasoning, so I figure it's fair game.
When I mentioned on Tumblr that I was participating in NaNoWriMo, a couple of people contacted me to give encouragement, ask what I was planning to write, etc. Given that most of what I post there is chronic illness/spoonie related, it will come as no surprise that many of these private messages came from other spoonies. During one of these conversations I mentioned that I was going to try to front-load as much writing as I could manage in the first week or so, because I will - without a doubt - 1) have low/no spoon days; 2) get sick at some point (to varying degrees of sickness, but hopefully nothing serious; 3) want to spend time doing something other than write - like eat on Thanksgiving, or spend some time with either of my November birthday-girl sisters; 4) have days when writing is just not happening or other things are much more interesting and words are stupid; or 5) days when you have other commitments and just don't see how to squeeze some writing in.
Now, I've seen this tip in relation to issues #3-5 - I won't be the only NaNo participant planning on some turkey and pumpkin pie this month, and a lot of other participants will have a ton of commitments that I do not - full-time/part-time jobs, families that they have to care for every day, travel schedules, kids hockey games they have to sit and watch and freeze at, whatever. And I'm sure we will all be faced with a day when, as happened to me last November, the sum total of our (usable) words will be the ones that are the main characters names - everything else will be a whole bunch of nonsense. (Countable nonsense, as far as word count goes, sure; but I always felt like it was almost cheating if I knew that it would never actually end up anywhere near the finished project. But that's my inner editor at play, and she's supposed to be on vacation this month.)
But I haven't seen a lot of discussion surround issues 1 & 2, and I realize that for most NaNo participants, they won't come into play: A low energy day here or there for a non-chronically ill person, is not unheard of, certainly, but ... its a different kind of energy when you start talking about spoons. On a day when I have no spoons, I don't mean that I might be too exhausted to write - I mean that I would (most likely) be too exhausted to eat. To take my meds. To roll from one side of the bed to another. To hold a pencil, or open up the laptop cover, let alone lift the thing that suddenly weighs more than 900lbs. To think through the brain fog enough to remember to brush my teeth after breakfast, instead of before. To try and remember if I took those pills already or if I just pictured taking them (which is why I have a whole pill system, but that's another post).
So writing anything legible or interesting, or valid (in my own opinion) on those days? Even if I keep to the daily schedule that everybody recommends, or force myself to sit in front of the computer during what is my usual writing time? It's simply not an option. And that's ok: it's not a huge deal. It is a knowable obstacle for me, because I have been doing this for a long time.
As for #2 and the likelihood that I will fall ill this month? Today is the 3rd of November - yesterday I visited with three children under the age of 10, and a newborn, and some adults. Today I can't move. It is a very high pain day; and it is possible that it could turn up to flare levels, but I'm hoping it doesn't. Pain is (for the most part) something I can write through (depending) - but if those little lovely ragamuffins also brought me some nice germs, or if my visit to the hospital tomorrow where people are apparently incapable of not coughing on me results in my next bout of strep or the flu, or - god forbid - something more serious; well then, all writing bets are off. It'll be a constant game of who knows.
Which is basically how it's going to be anyways, for all of us: a giant game of "Am I going to write the words today?" "Am I going to make the daily/weekly/monthly goal?" "Can I shut my inner editor up long enough to reach 50,000 words?" - We're all in a limbo here, and that's part of the fun.
But if there's anything I learned in the years of trying to complete college and deal with chronic illness at the same time, it's to get as far ahead on the syllabus as you possibly can, while you can. So, if I can write an extra thousand words today, I'm going to. So that I'll have that little cushion there for tomorrow, if I need it.
Because, even though the goal is to write everysingleday, and even though I am remembering that the more I write the more I want to write, November is not a month set apart from the rest of my life - it is not going to be some magical oasis of health and vitality and peace and calm and quiet, no matter how much I may wish it so.
So, that's my (completely unoriginal) piece of advice to all you other NaNo writers (and goddamn it, we are all writers!); Spoonies and non-spoonies alike, if you can - give yourself a little cushion, for the hard days, so you'll have something to fall back on.
Ahead, to day 4.
When I mentioned on Tumblr that I was participating in NaNoWriMo, a couple of people contacted me to give encouragement, ask what I was planning to write, etc. Given that most of what I post there is chronic illness/spoonie related, it will come as no surprise that many of these private messages came from other spoonies. During one of these conversations I mentioned that I was going to try to front-load as much writing as I could manage in the first week or so, because I will - without a doubt - 1) have low/no spoon days; 2) get sick at some point (to varying degrees of sickness, but hopefully nothing serious; 3) want to spend time doing something other than write - like eat on Thanksgiving, or spend some time with either of my November birthday-girl sisters; 4) have days when writing is just not happening or other things are much more interesting and words are stupid; or 5) days when you have other commitments and just don't see how to squeeze some writing in.
Now, I've seen this tip in relation to issues #3-5 - I won't be the only NaNo participant planning on some turkey and pumpkin pie this month, and a lot of other participants will have a ton of commitments that I do not - full-time/part-time jobs, families that they have to care for every day, travel schedules, kids hockey games they have to sit and watch and freeze at, whatever. And I'm sure we will all be faced with a day when, as happened to me last November, the sum total of our (usable) words will be the ones that are the main characters names - everything else will be a whole bunch of nonsense. (Countable nonsense, as far as word count goes, sure; but I always felt like it was almost cheating if I knew that it would never actually end up anywhere near the finished project. But that's my inner editor at play, and she's supposed to be on vacation this month.)
But I haven't seen a lot of discussion surround issues 1 & 2, and I realize that for most NaNo participants, they won't come into play: A low energy day here or there for a non-chronically ill person, is not unheard of, certainly, but ... its a different kind of energy when you start talking about spoons. On a day when I have no spoons, I don't mean that I might be too exhausted to write - I mean that I would (most likely) be too exhausted to eat. To take my meds. To roll from one side of the bed to another. To hold a pencil, or open up the laptop cover, let alone lift the thing that suddenly weighs more than 900lbs. To think through the brain fog enough to remember to brush my teeth after breakfast, instead of before. To try and remember if I took those pills already or if I just pictured taking them (which is why I have a whole pill system, but that's another post).
So writing anything legible or interesting, or valid (in my own opinion) on those days? Even if I keep to the daily schedule that everybody recommends, or force myself to sit in front of the computer during what is my usual writing time? It's simply not an option. And that's ok: it's not a huge deal. It is a knowable obstacle for me, because I have been doing this for a long time.
As for #2 and the likelihood that I will fall ill this month? Today is the 3rd of November - yesterday I visited with three children under the age of 10, and a newborn, and some adults. Today I can't move. It is a very high pain day; and it is possible that it could turn up to flare levels, but I'm hoping it doesn't. Pain is (for the most part) something I can write through (depending) - but if those little lovely ragamuffins also brought me some nice germs, or if my visit to the hospital tomorrow where people are apparently incapable of not coughing on me results in my next bout of strep or the flu, or - god forbid - something more serious; well then, all writing bets are off. It'll be a constant game of who knows.
Which is basically how it's going to be anyways, for all of us: a giant game of "Am I going to write the words today?" "Am I going to make the daily/weekly/monthly goal?" "Can I shut my inner editor up long enough to reach 50,000 words?" - We're all in a limbo here, and that's part of the fun.
But if there's anything I learned in the years of trying to complete college and deal with chronic illness at the same time, it's to get as far ahead on the syllabus as you possibly can, while you can. So, if I can write an extra thousand words today, I'm going to. So that I'll have that little cushion there for tomorrow, if I need it.
Because, even though the goal is to write everysingleday, and even though I am remembering that the more I write the more I want to write, November is not a month set apart from the rest of my life - it is not going to be some magical oasis of health and vitality and peace and calm and quiet, no matter how much I may wish it so.
So, that's my (completely unoriginal) piece of advice to all you other NaNo writers (and goddamn it, we are all writers!); Spoonies and non-spoonies alike, if you can - give yourself a little cushion, for the hard days, so you'll have something to fall back on.
Ahead, to day 4.
Friday, November 01, 2013
Hi Guys!
Are you ready for me to write more here in the next month than I have in all the previous months of this year combined? I thought so! Welcome to yet another NaBloPoMo - National Blog Posting Month - where I will attempt to write everysingleday, and you will attempt to not get bored of me writing everysingleday.
Considering howmuch little writing I've done since last years NaNo/NaBlo, this should be a real surprise for both of us!
I've already gotten off to a good start with my NaNo word count - met today's quota, and am going to be attempting to pad it a little bit, because I know I will have zero spoon days between now and the 30th, and I will need all the padding I can get to make it to 50,000 words. This year's book is a little bit more plotted out than last years - which means that I thought about it for at least 5 minutes before starting this year, because last year I didn't think about it at all.
I've got a very vague outline of what I'm hoping will turn out to be a middle grade/YA mystery novel - the middle grade/YA decision being dependent upon whether or not I can write it in the tone I'm hoping to strike, or if I make a bunch of 12 year olds sound like adults, in which case when editing time comes, there'll be a ton of work to do. But I'm not going to worry about that for now!
Nope, at this point, it's all about getting the words down on paper, getting the story out into the world. And this year, I actually know a lot of NaNo participants (and/or people I know are participating in NaNo), and am hoping to go to one or two of the local meetups - look at me, all doing more things I'm uncomfortable with!
But the main focus for the month - to the detriment of preeety much everything else (aside from my health & the people I care about, basically) - is going to be getting a book out of my brain and into my computer screen. Without editing it a million times (one of my mistakes last year was that I kept going back all the time), or being super judgemental about it (who, me?).
For all my fellow NaWhatever participants: Good luck, good luck, good luck! Let's get to writing! Follow me on Twitter, or add me on your NaNo page, if you want to commiserate about word counts (I'm a good commiserator). See you at 50,000! (I'm NeverThatEasy on both of those, btw.) For those of you just following along, and thinking "what a bunch of kooks, to try to do this in November of all months" - Right? What were we thinking??? Please keep your fingers crossed for us, and, if you follow me on Twitter and want to bug me about my word count (if I haven't mentioned it in a while, for example), please feel free! 3/4 of the reason I believe I can do this is because I really hate to let people down, so now that I've told everybody, I feel like I have to do it for real.
Current word count, by the way, after an hour or so of writing this morning is 1684. Definitely time to pad that a little.
Considering how
I've already gotten off to a good start with my NaNo word count - met today's quota, and am going to be attempting to pad it a little bit, because I know I will have zero spoon days between now and the 30th, and I will need all the padding I can get to make it to 50,000 words. This year's book is a little bit more plotted out than last years - which means that I thought about it for at least 5 minutes before starting this year, because last year I didn't think about it at all.
I've got a very vague outline of what I'm hoping will turn out to be a middle grade/YA mystery novel - the middle grade/YA decision being dependent upon whether or not I can write it in the tone I'm hoping to strike, or if I make a bunch of 12 year olds sound like adults, in which case when editing time comes, there'll be a ton of work to do. But I'm not going to worry about that for now!
Nope, at this point, it's all about getting the words down on paper, getting the story out into the world. And this year, I actually know a lot of NaNo participants (and/or people I know are participating in NaNo), and am hoping to go to one or two of the local meetups - look at me, all doing more things I'm uncomfortable with!
But the main focus for the month - to the detriment of preeety much everything else (aside from my health & the people I care about, basically) - is going to be getting a book out of my brain and into my computer screen. Without editing it a million times (one of my mistakes last year was that I kept going back all the time), or being super judgemental about it (who, me?).
For all my fellow NaWhatever participants: Good luck, good luck, good luck! Let's get to writing! Follow me on Twitter, or add me on your NaNo page, if you want to commiserate about word counts (I'm a good commiserator). See you at 50,000! (I'm NeverThatEasy on both of those, btw.) For those of you just following along, and thinking "what a bunch of kooks, to try to do this in November of all months" - Right? What were we thinking??? Please keep your fingers crossed for us, and, if you follow me on Twitter and want to bug me about my word count (if I haven't mentioned it in a while, for example), please feel free! 3/4 of the reason I believe I can do this is because I really hate to let people down, so now that I've told everybody, I feel like I have to do it for real.
Current word count, by the way, after an hour or so of writing this morning is 1684. Definitely time to pad that a little.
Sunday, November 11, 2012
Heading to a big family shindig
tonight. Doing my best to coast along on my meds as best I can. Not working all that well, as having company is a bit of an additional (but awesome) strain. I am so enjoying having heartfelt people in the house. Not overly happy, not upset, just genuine people. People I love and who love me, and who don't totally get it (seriously, Aunt Pam: stop with the patting!), but who try really hard and are on vacation and will stay up all night playing games and talking about whatever we feel like - heavy things and nothing things, and everything in between - and just breathing. Of course, my dad is still here, and he's like this heaviness over everything, but I'm doing my best to ignore that as well. I can tell it's a tad bit uncomfortable for them, but I'm not going to be able to just push everything aside and pretend all is fine and dandy, and I told them that. So, we're grown ups, we're not all getting along, we can be civil, and we're working from there. In the meantime, aside from that, and the fact that I feel like I'm being given electro-shock therapy (stupid new meds) AND being trampled by horses (just my regular fibro feelings), I'm having a perfectly lovely, agreeable visit. They've gone off on a Fenway tour, which gives me a chance to get some breathing time in, and I'm giving myself a two day pass on the NaNo, which means a lot of catch-up come Tuesday, but less pressure today tomorrow (since I know my brain is going to be worth nothing after all the drugs I'm going to need to make it through this wedding tonight). So, talk to you tomorrow, ladies and gents, hope your weekend is going smoothly too. :)
Saturday, November 10, 2012
Trying hard
to keep this from becoming a daily NaNo record, but, you guys, I hit 15,000 words today, and that? Rocks. Because I did that in spite of the god damn bronchitis, and antibiotics x3, and my mom being sick as well, and two sleepovers, trying to get organized for company and trying to get ready for a big family wedding tomorrow. Sure, some things fell by the wayside, but they'll be there when I get around to them (eventually).
In the meantime, I'm going to give myself a big high five and take a deep breath, then put on my gorram bra because that company I mentioned before should be here in the next few minutes. Bras are stupid.
In the meantime, I'm going to give myself a big high five and take a deep breath, then put on my gorram bra because that company I mentioned before should be here in the next few minutes. Bras are stupid.
Wednesday, November 07, 2012
Saturday, November 03, 2012
Getting Ready
for Lil Girl to come over for a sleepover. Very excited: I have no doubt that she'll make it past her brother's midnight mark from last weekend's Fright Fest - we didn't even make it through one scary movie: the kid wanted to watch The Hunger Games, then he zonked out on me five minutes into The Woman in Black, which - just: no. I was too sad to watch a movie where kids kept dying. Lil Girl is another story: I told her we could stay up "all night long", so I'm anticipating a looong night. It'll be a nice change to have company during the wee hours, though. (Company and Disney movies... all I need now is to make some brownies.)
Wrote my three pages for today (am a little off target, but so please with what I've written that I don't care about the numbers yet: ask me again on the 28th), getting the blog posted, trying to go into the sleepover with (what I have that passes for) energy & enthusiasim. I miss her so much, and I'm wicked excited... but I also know somewhere around 9 o'clock, she's going to be wearing on my nerves and we're both going to need a nap. :) That's the fun of six year olds: all the energy of a three-year-old, with none of the naps.
See you in the morning ~ hope your Saturday night is as exciting as mine. (I'm going to think of a name to call you all, but I'm coming up blank: 'the five of you', how's that sound?)
Wrote my three pages for today (am a little off target, but so please with what I've written that I don't care about the numbers yet: ask me again on the 28th), getting the blog posted, trying to go into the sleepover with (what I have that passes for) energy & enthusiasim. I miss her so much, and I'm wicked excited... but I also know somewhere around 9 o'clock, she's going to be wearing on my nerves and we're both going to need a nap. :) That's the fun of six year olds: all the energy of a three-year-old, with none of the naps.
See you in the morning ~ hope your Saturday night is as exciting as mine. (I'm going to think of a name to call you all, but I'm coming up blank: 'the five of you', how's that sound?)
Thursday, November 01, 2012
Here we are in November again,
that time of year when your Google Reader explodes as all the lax bloggers (like me!) attempt to come up with blog fodder for their daily NaBloPoMo attempts. I haven't decided yet whether or not I'm going to try for that, I just know that I don't want to miss out on my 6th year because I was so stuck in a funk I couldn't even try. So, I figure I'll try. Who knows?
The funk, though, man. It's like Pigpen level, people. Between the bronchitis and my complete inability to stand people, I have been a joy to be around, I assure you. I got a ton of things accomplished this morning, however: rebooked a bunch of appointments I missed out on because of the germs that were trying to take over my body, labelled two hundred pictures, bought a couple more Christmas presents (leaving me with like, four people left, which is awesome, and necessary because we all know I will get sick 17 times between now and then, and that severely cuts into your shopping time).
Started writing a novel.
I'm sorry? What was that?
Yeah: I signed up for NaNoWriMo, because I am, apparently, an idiot. No, in truth it's because there are apparently no limits to my ability to procrastinate doing things I really don't want to do, because instead of looking for housing again this morning (because it is so gorram frustrating and near to impossible), I signed myself up to write 50,000 words in the next thirty days. I'm kind of a dope. Not that I can't write 50,000 words in thirty days, it's the "having them all go together logically" part that gets me. I've written a couple of (really bad, no, honestly terrible) novels already, but this will be my first time pressured one, so it'll be interesting to see how it comes out. So far I have about 1000 words of description on three of the main characters. I'm surprised I didn't start writing about their shoe sizes, to be honest... Now I've just got to get them to do something interesting.
So I hope to write here, I hope to write there; I hope to be there more for the people who need me, and figure out how to better ask for the things I need; I hope to find some miraculous new way of affording (not just financially, but physically) my own place; I hope to figure out how to stop being so angry and sad all the time; I hope to dig my way out of this funk and through to the other side, however I can. November, you've got a lot riding on you, so let's kick ass.
Good luck to all of my fabulous readers ~ may whatever you hope to do in November work out for all of you. Fingers crossed.
The funk, though, man. It's like Pigpen level, people. Between the bronchitis and my complete inability to stand people, I have been a joy to be around, I assure you. I got a ton of things accomplished this morning, however: rebooked a bunch of appointments I missed out on because of the germs that were trying to take over my body, labelled two hundred pictures, bought a couple more Christmas presents (leaving me with like, four people left, which is awesome, and necessary because we all know I will get sick 17 times between now and then, and that severely cuts into your shopping time).
Started writing a novel.
I'm sorry? What was that?
Yeah: I signed up for NaNoWriMo, because I am, apparently, an idiot. No, in truth it's because there are apparently no limits to my ability to procrastinate doing things I really don't want to do, because instead of looking for housing again this morning (because it is so gorram frustrating and near to impossible), I signed myself up to write 50,000 words in the next thirty days. I'm kind of a dope. Not that I can't write 50,000 words in thirty days, it's the "having them all go together logically" part that gets me. I've written a couple of (really bad, no, honestly terrible) novels already, but this will be my first time pressured one, so it'll be interesting to see how it comes out. So far I have about 1000 words of description on three of the main characters. I'm surprised I didn't start writing about their shoe sizes, to be honest... Now I've just got to get them to do something interesting.
So I hope to write here, I hope to write there; I hope to be there more for the people who need me, and figure out how to better ask for the things I need; I hope to find some miraculous new way of affording (not just financially, but physically) my own place; I hope to figure out how to stop being so angry and sad all the time; I hope to dig my way out of this funk and through to the other side, however I can. November, you've got a lot riding on you, so let's kick ass.
Good luck to all of my fabulous readers ~ may whatever you hope to do in November work out for all of you. Fingers crossed.
Tuesday, May 01, 2012
My Years of Magical Thinking...
And why I'm calling BS.
There's this idea out there - in the everyday world, in pop culture, in families the world over and sadly still in some medical circles - that you can believe yourself into being well (or that you somehow believed yourself into being sick in the first place). That all that it takes is wanting to be better badly enough, purely enough, consciously enough, something enough for it to somehow "manifest" in your life.
The idea takes numerous forms - there's the curative power of prayer; the school of 'get up off your ass & do something about it, you whiners' (aka the bootstrappers); the 'but you've got nothing to be sad about/tired from/allergic to' zealots; a million symptom-specific diets; holy water & snake oil & pills made from coral only found in the shadow of the wreck of the Lusitania; and the ever adorable 'Oh we all get headaches/sad/tired sometimes, but you don't see me sitting around complaining about it' crowd. Those are just a few off the top of my head - there's probably a thousand more we could come up with together (Feel free to leave your gravest offenders in the comments!) but they all have one thing in common - they take a person's illness or disability and make it not a medical condition, or a failure of society to accommodate the needs of that person - but a personal failing on the part of the individual. They all nullify our personal (individual & cumulative) issues and needs and turn them into something we're doing wrong or not well enough. And I say bullshit.
This sort of blame, grounded in magical thinking, shows itself in everything from the rantings of politicians about benefit scroungers, to the old woman in the parking lot who yells at me for being too young to need a handicapped parking spot, to my super-crunchy sister explaining to me that all illness is rooted in "past personal traumas" and "touch therapy" might be the answer for me. It shows in personal stories of achievement - converts of former patients who swear by whatever method happened to work for them, and preach about it now as if it were the One True Word. I'm happy for them, truly, but can't get over the amount of gall it would take to assume that what worked for you and your illness must, of course, then work for me (or the millions of others of us who share a disease). Just because you started running marathons on a diet consisting solely of cough medicine and peach pits, does not mean it would work as well (or at all) for me. Thanks for telling me about it, now carry on with your business.
But it's never that simple - the fact that there is a peach pit & cough medicine cure out there, and I am not attempting it: that's unacceptable in society's eyes. I should be doing everything I can to fight against my illnesses, even if it's contrary to common sense, defies the constraints of financial, emotional or physical realities, &/or is the least likely antidote to whatever ails me & in fact, would make my problem a million times worse. Society gets to pick if I'm trying hard enough, and {Spoiler Alert} I never will be!!
-----
I was 15 when I first got sick, nowhere near done figuring out what kind of person I wanted to be when I grew up, and everything I thought I knew about my world & who I was just... ended. I wasn't smart anymore, because I would sleep through my classes, and the time I should be doing homework, and miss weeks of school at a time. I wasn't a dancer anymore: after months and months of missing them, on days I could drag myself there, I would go to the one dance class I thought I could manage, do a half-ass job and then curl up in the corner on the gymnastics mats to go to sleep. I'd gone from teaching three days a week & taking my own classes to barely limping through the basic warm-up at the barre.
But no one told me to stop: My doctors said I was very sick, but that I "shouldn't give in", that I should "Do what (I) can." To a fifteen-year-old (well, to fifteen-year-old me, anyways) that was like a challenge - "go until you can't go anymore." And that's exactly what I did: I worked so hard at school (even when I was homeschooling) that when summer came around, I was bedridden. I still can't watch the show tape from that last year, when I lost out on my first solo and instead hobbled through the one number in the recital I had to nearly kill myself dancing through. Afterwards, laying in the wings, waiting for my heartbeat to slow and my vision to come back (looking back it's likely my POTS/NMH issues were a problem even then), I thought to myself: "Well, was that worth dying for?"
But I didn't stop pushing, because everybody told me I shouldn't. My family constantly told me that I just had to keep trying, my teachers said that "surely, someone as smart as you can figure out how to beat this," my friends nagged that I'd been sick long enough, already, hadn't I? I know that they were trying to be encouraging, but it was the only message I heard, that I had to battle, until I won. That it would be like giving up, to say that I might have to live with this illness instead of fighting against it. The doctors made sure I knew that if I started to "act like I was sick" I would only get worse: "Don't give in," they would tell me, "keep fighting." So I did. For (as it turned out, way too many) years.
My parents, armed with the same doctor's advice - "don't let her give into it, because then she could be sick forever"- were as ill-equipped to deal with our new situation as I was. Never mind that I was sick right then and that might have been important to deal with. Nope, the now was always about the fight, and so we spent a good portion of what was left of my teenage years fighting against the CFS, and often against each other, when it seemed to them that I was "giving in" to it: When it got to the point that I couldn't eat, and I lost about 35 pounds like it was water weight, I can remember having screaming matches with my dad at the table where he would say such helpful things as "JUST PUT IT IN YOUR MOUTH AND EAT IT FOR CHRIST'S SAKE!!!" and I just... couldn't. It tasted like ash - everything did - and burned all the way down, where it would sit, heavy as winter boots until my belly revolted and back up it came. I would cry and he would yell that I was making myself sicker, with the crying. Or being in the car on the receiving end of glares from my siblings, when they all wanted to go someplace and I was too exhausted to move, let alone get out of the car again, and my sister closing the door, rolling her eyes and saying "Well, I guess, if you're going to be that "sick", we'll all just stop having fun now" as we drove home.
We didn't know, is my point: Nobody gave me - or them - the skills. Maybe, with something like an aggressive cancer, the doctors would've been right on target - 'fight back, till its gone: take no prisoners, grant no quarter!' But I had something nobody knew what to with, a chronic illness with no known treatment, cause, cure. And so their advice was way off the mark. It was like I was diagnosed with CFS (and later Fibro & POTS & now the diabetes, not to mention the 14 other things in between and the one big question mark they're all still looking for as the Holy Grail) and instead of a treatment plan, with meds to take and dos and don'ts to follow, all they told me is "You have it, but pretend you don't, as much as is possible." And that was some damn bad advice.
It was wrong and dangerous, and it could've been - on more than one occasion for me- deadly. (Turns out ignoring pneumonia is potentially a bad thing: who knew?)
That's why this fallacy of magical thinking gets me so upset - because it took a fifteen-year-old girl who could have learned the skills she needed to manage a chronic illness and continue to live a full (if different) life, and left her helpless, terrified and vulnerable. And blaming herself.
-----
So, I didn't have the skills, or the treatment plan, or the answers, but everybody kept telling me that they were out there: keep trying till you find The Cure. So I tried all the crazy shit that you think you are not desperate enough to go near: pills with high price tags and exorbitant claims; cleansings and energy work and fasting rituals; diets and doing an hour of PT every Friday that takes you until Thursday to recover from; pushing yourself way beyond what your body is actually capable of. The doctors might roll their eyes at my latest endeavor, or be all for it -"couldn't hurt" I had more than one of them tell me, even though they were 100% wrong- but they didn't have anything better to offer, so it was up to me to follow the magical thinking train as far as it would take me.
It goes pretty far, you know: you work so hard at convincing yourself that you're getting better, while your hospitalization rate soars and your immune system falters. You can laugh with the doctors about that "last bit of voodoo you tried" all the while you're planning how you'll scrape up the money for your next. You can fuel that train with all of the self-hatred you accumulate when people tell you that you're just being lazy, or that you're faking, or that if you really, really tried, you could do it. (That's a never ending, renewable resource right there: look, I fixed the economy!)
But in the end, it didn't matter how often I thought maybe this pill was helping or that I just had to make it through the next 14 sessions and the acupuncture would clear everything up. In the end, I was sicker than when I started, discouraged at myself for failing and certain that if I just tried hard enough, like everybody said, I could beat this thing.
---
There's a lot of maybes about my illnesses - maybe if I'd never gotten the mono, it wouldn't have switched on whatever self destruct sequence is probably hiding in my genetic code, or maybe if I'd gone to see a specialist right away s/he would've recognized the problem before it spiraled into today's current chaos. Maybe X or maybe Y. I don't know about any of that.
But there's one certainty about the whole mess: It could've been better. My experience did not have to be as hellish as it often was. It didn't have to be as isolating, and full of blame as it was: Because everybody - from my teachers to my sisters to my grandmother who couldn't understand why I'd cry when she suggested I go to a faith healer - blamed me at some point. I'm not saying it would've been a land of rainbows and puppies - hell I don't buy into magical thinking now, and my life is certainly pretty puppy-less - but it could've been better than what it was.
And that's where society and medicine and the world with all of it's "The power of the Secret of thinking with your wholeheart and wanting it with your entire being" bullshit failed 15-year-old me, and 32-year-old me, and the 3-year-old with learning disabilities that I used to tutor, and my sister who has depression, and basically every disability activist I've ever met; and every person with a disability, and their families and my parents, and, well, the whole world, honestly. It isn't enough to wish it away - that wishes us away, too. It doesn't honor who we are to be told that we're just not doing enough to be well, or that we worried ourselves into being sick, or that if I looked on the bright side more often, I would somehow no longer be allergic to all of the contents of the natural world. It's bullshit is what it is, and I'm going to call you on it, now that I know it for lies.
----
It wasn't until I got to college and started meeting other people with disabilities and allies and advocates and started paying attention to the people who said: "Listen, it might get better: You never know, you might wake up tomorrow and be healed and awesome. But there are ways to make today easier to live through, to be awesome with a chronic illness, and one of them is NOT FIGHTING quite so much. It's accepting that you're sick. You're a sick person, a disabled person, and ... you know what? That's fine, too. You're not lesser, or weaker, or anything negative because you're sick. You're just sick. It's a part of who you are, and you need to deal with it, because this fighting with it is just making everything worse."
I cringe to remember my Freshman self, saying to a professor that I was "Not disabled: just temporarily out of service." She was polite enough not to say anything, but I want to go back and punch myself in the face for that flippant nonsense: I really thought that not claiming part of myself would be beneficial? For who? Was it supposed to be funny? It seems absurd and sad now - I don't even know. I do know that when I finally made myself face the fact that all of this magical thinking was getting me nowhere, was in fact hurting more than it was helping, it was devastating to me: Not being able to cure myself, I must instead of course be a complete failure. (It was this all or nothing attitude that really helped my depression stay around as long as it did, unfortunately.) There was no middle ground for me, and realizing that people were wrong and I wasn't going to be able to think myself better? That all the pushing my body through shit was actually making things worse? It was like stepping out into empty air yet again - I had no idea what could be next for me, if everything I knew how to do - if fighting & believing that it could all just magically go away one day - was wrong.
But once I got past that, once I accepted that truth, I learned so many ways to make my life better, to make it more meaningful, to work towards not just marking time until I got better, but living through that time, because this is my life now. It's a life with chronic illness, and yeah, I'd rather it wasn't, but wishing doesn't make it so, so get to living & dealing with it, because it's a part of my life, but it's not all that I am.
And that's a truth I worked long and hard to find - and it still takes some work to remember that it applies to me - that there's societal constructs at work behind my feeling of just not doing enough to fix myself, and that I'm not really a lazy, layabout who'd rather play on the Internet all day then get a real job. That 16 doctors appointments in the space of three weeks is more than enough, even if they're not giving me the answers I need. That eating french toast today instead of a salad like every other day, and is not the reason I'll obviously never get better. To remember that there are reasonable levels of self-care and coping strategies, and then there's just plain false hope.
And the idea that I might have gotten to that point so much sooner if somebody had been around to say to me "Magical thinking isn't going to cut it. There may a cure out there, but it's probably not going to be found in this guy's car trunk." (True story) "And as far as I can tell, there's nobody around to provide you with a deus ex machina, so get to living with this instead of waiting for it to get gone."
But that's why I talk about magical cures when they pop up in what I'm reading or watching. It's why I get into arguments with the people in my life who dole out advice on seaweed pills along with our shared breakfast. And it's why I'll keep talking about it here. Because somewhere there's a fifteen-year-old girl, with an illness she did nothing to cause and she can do nothing to get rid of. And she deserves to hear the truth. Not the fluffy, Secret-based philosophy of pseudo-cures and self-blame. But the facts: That chronic illness & disability are just another part of life, and you can deal with them, and treat them, and live with them, and even thrive with them - to the best of your ability - but you can't, not ever, think your way out of them.
*Welcome to all the Blogging Against Disability Day readers - I know there's a million great posts to be read, so I really appreciate it if you made it all the way through that! If you're one of my regular readers, please head over to the Goldfish's place, and read some of the other excellent BADD posts: I promise, you'll learn a lot.*
There's this idea out there - in the everyday world, in pop culture, in families the world over and sadly still in some medical circles - that you can believe yourself into being well (or that you somehow believed yourself into being sick in the first place). That all that it takes is wanting to be better badly enough, purely enough, consciously enough, something enough for it to somehow "manifest" in your life.
The idea takes numerous forms - there's the curative power of prayer; the school of 'get up off your ass & do something about it, you whiners' (aka the bootstrappers); the 'but you've got nothing to be sad about/tired from/allergic to' zealots; a million symptom-specific diets; holy water & snake oil & pills made from coral only found in the shadow of the wreck of the Lusitania; and the ever adorable 'Oh we all get headaches/sad/tired sometimes, but you don't see me sitting around complaining about it' crowd. Those are just a few off the top of my head - there's probably a thousand more we could come up with together (Feel free to leave your gravest offenders in the comments!) but they all have one thing in common - they take a person's illness or disability and make it not a medical condition, or a failure of society to accommodate the needs of that person - but a personal failing on the part of the individual. They all nullify our personal (individual & cumulative) issues and needs and turn them into something we're doing wrong or not well enough. And I say bullshit.
This sort of blame, grounded in magical thinking, shows itself in everything from the rantings of politicians about benefit scroungers, to the old woman in the parking lot who yells at me for being too young to need a handicapped parking spot, to my super-crunchy sister explaining to me that all illness is rooted in "past personal traumas" and "touch therapy" might be the answer for me. It shows in personal stories of achievement - converts of former patients who swear by whatever method happened to work for them, and preach about it now as if it were the One True Word. I'm happy for them, truly, but can't get over the amount of gall it would take to assume that what worked for you and your illness must, of course, then work for me (or the millions of others of us who share a disease). Just because you started running marathons on a diet consisting solely of cough medicine and peach pits, does not mean it would work as well (or at all) for me. Thanks for telling me about it, now carry on with your business.
But it's never that simple - the fact that there is a peach pit & cough medicine cure out there, and I am not attempting it: that's unacceptable in society's eyes. I should be doing everything I can to fight against my illnesses, even if it's contrary to common sense, defies the constraints of financial, emotional or physical realities, &/or is the least likely antidote to whatever ails me & in fact, would make my problem a million times worse. Society gets to pick if I'm trying hard enough, and {Spoiler Alert} I never will be!!
-----
I was 15 when I first got sick, nowhere near done figuring out what kind of person I wanted to be when I grew up, and everything I thought I knew about my world & who I was just... ended. I wasn't smart anymore, because I would sleep through my classes, and the time I should be doing homework, and miss weeks of school at a time. I wasn't a dancer anymore: after months and months of missing them, on days I could drag myself there, I would go to the one dance class I thought I could manage, do a half-ass job and then curl up in the corner on the gymnastics mats to go to sleep. I'd gone from teaching three days a week & taking my own classes to barely limping through the basic warm-up at the barre.
But no one told me to stop: My doctors said I was very sick, but that I "shouldn't give in", that I should "Do what (I) can." To a fifteen-year-old (well, to fifteen-year-old me, anyways) that was like a challenge - "go until you can't go anymore." And that's exactly what I did: I worked so hard at school (even when I was homeschooling) that when summer came around, I was bedridden. I still can't watch the show tape from that last year, when I lost out on my first solo and instead hobbled through the one number in the recital I had to nearly kill myself dancing through. Afterwards, laying in the wings, waiting for my heartbeat to slow and my vision to come back (looking back it's likely my POTS/NMH issues were a problem even then), I thought to myself: "Well, was that worth dying for?"
But I didn't stop pushing, because everybody told me I shouldn't. My family constantly told me that I just had to keep trying, my teachers said that "surely, someone as smart as you can figure out how to beat this," my friends nagged that I'd been sick long enough, already, hadn't I? I know that they were trying to be encouraging, but it was the only message I heard, that I had to battle, until I won. That it would be like giving up, to say that I might have to live with this illness instead of fighting against it. The doctors made sure I knew that if I started to "act like I was sick" I would only get worse: "Don't give in," they would tell me, "keep fighting." So I did. For (as it turned out, way too many) years.
My parents, armed with the same doctor's advice - "don't let her give into it, because then she could be sick forever"- were as ill-equipped to deal with our new situation as I was. Never mind that I was sick right then and that might have been important to deal with. Nope, the now was always about the fight, and so we spent a good portion of what was left of my teenage years fighting against the CFS, and often against each other, when it seemed to them that I was "giving in" to it: When it got to the point that I couldn't eat, and I lost about 35 pounds like it was water weight, I can remember having screaming matches with my dad at the table where he would say such helpful things as "JUST PUT IT IN YOUR MOUTH AND EAT IT FOR CHRIST'S SAKE!!!" and I just... couldn't. It tasted like ash - everything did - and burned all the way down, where it would sit, heavy as winter boots until my belly revolted and back up it came. I would cry and he would yell that I was making myself sicker, with the crying. Or being in the car on the receiving end of glares from my siblings, when they all wanted to go someplace and I was too exhausted to move, let alone get out of the car again, and my sister closing the door, rolling her eyes and saying "Well, I guess, if you're going to be that "sick", we'll all just stop having fun now" as we drove home.
We didn't know, is my point: Nobody gave me - or them - the skills. Maybe, with something like an aggressive cancer, the doctors would've been right on target - 'fight back, till its gone: take no prisoners, grant no quarter!' But I had something nobody knew what to with, a chronic illness with no known treatment, cause, cure. And so their advice was way off the mark. It was like I was diagnosed with CFS (and later Fibro & POTS & now the diabetes, not to mention the 14 other things in between and the one big question mark they're all still looking for as the Holy Grail) and instead of a treatment plan, with meds to take and dos and don'ts to follow, all they told me is "You have it, but pretend you don't, as much as is possible." And that was some damn bad advice.
It was wrong and dangerous, and it could've been - on more than one occasion for me- deadly. (Turns out ignoring pneumonia is potentially a bad thing: who knew?)
That's why this fallacy of magical thinking gets me so upset - because it took a fifteen-year-old girl who could have learned the skills she needed to manage a chronic illness and continue to live a full (if different) life, and left her helpless, terrified and vulnerable. And blaming herself.
-----
So, I didn't have the skills, or the treatment plan, or the answers, but everybody kept telling me that they were out there: keep trying till you find The Cure. So I tried all the crazy shit that you think you are not desperate enough to go near: pills with high price tags and exorbitant claims; cleansings and energy work and fasting rituals; diets and doing an hour of PT every Friday that takes you until Thursday to recover from; pushing yourself way beyond what your body is actually capable of. The doctors might roll their eyes at my latest endeavor, or be all for it -"couldn't hurt" I had more than one of them tell me, even though they were 100% wrong- but they didn't have anything better to offer, so it was up to me to follow the magical thinking train as far as it would take me.
It goes pretty far, you know: you work so hard at convincing yourself that you're getting better, while your hospitalization rate soars and your immune system falters. You can laugh with the doctors about that "last bit of voodoo you tried" all the while you're planning how you'll scrape up the money for your next. You can fuel that train with all of the self-hatred you accumulate when people tell you that you're just being lazy, or that you're faking, or that if you really, really tried, you could do it. (That's a never ending, renewable resource right there: look, I fixed the economy!)
But in the end, it didn't matter how often I thought maybe this pill was helping or that I just had to make it through the next 14 sessions and the acupuncture would clear everything up. In the end, I was sicker than when I started, discouraged at myself for failing and certain that if I just tried hard enough, like everybody said, I could beat this thing.
---
There's a lot of maybes about my illnesses - maybe if I'd never gotten the mono, it wouldn't have switched on whatever self destruct sequence is probably hiding in my genetic code, or maybe if I'd gone to see a specialist right away s/he would've recognized the problem before it spiraled into today's current chaos. Maybe X or maybe Y. I don't know about any of that.
But there's one certainty about the whole mess: It could've been better. My experience did not have to be as hellish as it often was. It didn't have to be as isolating, and full of blame as it was: Because everybody - from my teachers to my sisters to my grandmother who couldn't understand why I'd cry when she suggested I go to a faith healer - blamed me at some point. I'm not saying it would've been a land of rainbows and puppies - hell I don't buy into magical thinking now, and my life is certainly pretty puppy-less - but it could've been better than what it was.
And that's where society and medicine and the world with all of it's "The power of the Secret of thinking with your wholeheart and wanting it with your entire being" bullshit failed 15-year-old me, and 32-year-old me, and the 3-year-old with learning disabilities that I used to tutor, and my sister who has depression, and basically every disability activist I've ever met; and every person with a disability, and their families and my parents, and, well, the whole world, honestly. It isn't enough to wish it away - that wishes us away, too. It doesn't honor who we are to be told that we're just not doing enough to be well, or that we worried ourselves into being sick, or that if I looked on the bright side more often, I would somehow no longer be allergic to all of the contents of the natural world. It's bullshit is what it is, and I'm going to call you on it, now that I know it for lies.
----
It wasn't until I got to college and started meeting other people with disabilities and allies and advocates and started paying attention to the people who said: "Listen, it might get better: You never know, you might wake up tomorrow and be healed and awesome. But there are ways to make today easier to live through, to be awesome with a chronic illness, and one of them is NOT FIGHTING quite so much. It's accepting that you're sick. You're a sick person, a disabled person, and ... you know what? That's fine, too. You're not lesser, or weaker, or anything negative because you're sick. You're just sick. It's a part of who you are, and you need to deal with it, because this fighting with it is just making everything worse."
I cringe to remember my Freshman self, saying to a professor that I was "Not disabled: just temporarily out of service." She was polite enough not to say anything, but I want to go back and punch myself in the face for that flippant nonsense: I really thought that not claiming part of myself would be beneficial? For who? Was it supposed to be funny? It seems absurd and sad now - I don't even know. I do know that when I finally made myself face the fact that all of this magical thinking was getting me nowhere, was in fact hurting more than it was helping, it was devastating to me: Not being able to cure myself, I must instead of course be a complete failure. (It was this all or nothing attitude that really helped my depression stay around as long as it did, unfortunately.) There was no middle ground for me, and realizing that people were wrong and I wasn't going to be able to think myself better? That all the pushing my body through shit was actually making things worse? It was like stepping out into empty air yet again - I had no idea what could be next for me, if everything I knew how to do - if fighting & believing that it could all just magically go away one day - was wrong.
But once I got past that, once I accepted that truth, I learned so many ways to make my life better, to make it more meaningful, to work towards not just marking time until I got better, but living through that time, because this is my life now. It's a life with chronic illness, and yeah, I'd rather it wasn't, but wishing doesn't make it so, so get to living & dealing with it, because it's a part of my life, but it's not all that I am.
And that's a truth I worked long and hard to find - and it still takes some work to remember that it applies to me - that there's societal constructs at work behind my feeling of just not doing enough to fix myself, and that I'm not really a lazy, layabout who'd rather play on the Internet all day then get a real job. That 16 doctors appointments in the space of three weeks is more than enough, even if they're not giving me the answers I need. That eating french toast today instead of a salad like every other day, and is not the reason I'll obviously never get better. To remember that there are reasonable levels of self-care and coping strategies, and then there's just plain false hope.
And the idea that I might have gotten to that point so much sooner if somebody had been around to say to me "Magical thinking isn't going to cut it. There may a cure out there, but it's probably not going to be found in this guy's car trunk." (True story) "And as far as I can tell, there's nobody around to provide you with a deus ex machina, so get to living with this instead of waiting for it to get gone."
But that's why I talk about magical cures when they pop up in what I'm reading or watching. It's why I get into arguments with the people in my life who dole out advice on seaweed pills along with our shared breakfast. And it's why I'll keep talking about it here. Because somewhere there's a fifteen-year-old girl, with an illness she did nothing to cause and she can do nothing to get rid of. And she deserves to hear the truth. Not the fluffy, Secret-based philosophy of pseudo-cures and self-blame. But the facts: That chronic illness & disability are just another part of life, and you can deal with them, and treat them, and live with them, and even thrive with them - to the best of your ability - but you can't, not ever, think your way out of them.
*Welcome to all the Blogging Against Disability Day readers - I know there's a million great posts to be read, so I really appreciate it if you made it all the way through that! If you're one of my regular readers, please head over to the Goldfish's place, and read some of the other excellent BADD posts: I promise, you'll learn a lot.*
Thursday, July 07, 2011
Topics, topics, who's got a topic?
I could write about how hot it is here, and how everyone else in my family would like that to mean all air conditioning all the time, but the stale smell of the air conditioning combined with general cooking smells that will not dissipate, plus the fact that air conditioning makes me frozen, added to the fact that parts of our house get a really good breeze makes me less than amenable to this plan. Which earns me a lot of dirty looks, I suppose, but it turns out I give just as many, when I come out of my non-air conditioned room to find that the rest of the house is iceberg cold. It's a game we will continue to play all summer, unfortunately, because the heat doesn't really bother me, and it seems to really bother everybody else. Humidity bothers me, asthma wise, and I have no choice then but to fall back on the A/C. Heat itself, however, because I am very low on the physical activity meter (& also a lot lower in the room physically - heat rises), doesn't mean all that much. Sun, humidity, all of the main accomplices of heat - we are enemies, but heat & I are kind of buddies.
(I recently told Zack that I have experienced a dramatic increase in my levels of sweating - "Usually, aside for fevers, I am not a sweat-er" I told him. "No: You're more of a jacket" was his completely straight-faced response. Zack is so pathetic, he can't help but be adorable, sometimes. Even if I have now been waiting four days for his substitute nurse to call me back - I don't like that substitute nurse very much.)
What else is going on here - OH YEAH - a big huge shower. Even though it is not really all that big or huge; it just feels like it because there are a lot of details and secrets and planning and crafts and last minute things that I hate, but you can't cook for a party three weeks beforehand, unfortunately. That's this weekend, in case you were wondering. I have no doubts that it will turn out to be lovely, but the anxiety of getting there reminds me that I would - despite awesome organizational and DIY-skills - make a poor wedding planner.
I always get nervous before parties, and can't really nail down what the anxiety is about (aside from things just completely falling apart). I know I am not truly anti-social, but there is a huge part of me that is introverted, and definitely socially awkward. I long to be one of those gracious hostesses who doesn't search for the right thing to say that makes people feel welcome, or who knows how to blend different groups of people together seamlessly, but longing for it unfortunately does not make it so.
In response to a previous query, I thought I'd tell you that we've decided on two games for the shower, neither of which require much of a spotlight or too much intense participation (which I am not sure we can count on from our guests) - a "How Old Am I?" guessing game, with pictures of the bride at various ages and stages, and a "Design a Wedding Cake" coloring thing that has so far only been hilarious in the number of ways my sister and I have miscommunicated about it.
Originally, I'd read something about creating cakes out of Play Doh, which I thought sounded like fun and was different enough that not everybody would have played it a million times already (toilet paper dress making, I'm looking at you!) We decided to scale it back a little, I think mostly because not everybody here is a big Play Doh fan (boo hiss: Play Doh is awesome!), and do models instead. I told my sister that there were cake templates that we could use, and then people could decorate their own and have SisterCh judge which was best. Now, what I was talking about was doing little Styrofoam models of cake - actually called 'cake templates' (the kind people use when they're learning to frost cakes) with real frosting and what not - still kind of messy, but silly enough that people were having fun. But what SisterJ (the matron (ha!) of honor) heard was templates - like a paper drawing of a cake, that we would then have people decorate. So I went out and bought 20 pastry bags, and the look she gave me when I took them out of the bag was as if I told her I had decided that I would wear my underwear on the outside of my clothing from now on. In the interest of space and cleanliness, we decided to go with the coloring page version of the game, and I'm hoping it will still have enough silliness in it to make it fun and worthwhile.
I'm off to finish printing the pictures for the How Old Am I game, as we speak, so wish me luck. Let's hope whatever any of us wind up doing this weekend will be fun and fruitful!
(I recently told Zack that I have experienced a dramatic increase in my levels of sweating - "Usually, aside for fevers, I am not a sweat-er" I told him. "No: You're more of a jacket" was his completely straight-faced response. Zack is so pathetic, he can't help but be adorable, sometimes. Even if I have now been waiting four days for his substitute nurse to call me back - I don't like that substitute nurse very much.)
What else is going on here - OH YEAH - a big huge shower. Even though it is not really all that big or huge; it just feels like it because there are a lot of details and secrets and planning and crafts and last minute things that I hate, but you can't cook for a party three weeks beforehand, unfortunately. That's this weekend, in case you were wondering. I have no doubts that it will turn out to be lovely, but the anxiety of getting there reminds me that I would - despite awesome organizational and DIY-skills - make a poor wedding planner.
I always get nervous before parties, and can't really nail down what the anxiety is about (aside from things just completely falling apart). I know I am not truly anti-social, but there is a huge part of me that is introverted, and definitely socially awkward. I long to be one of those gracious hostesses who doesn't search for the right thing to say that makes people feel welcome, or who knows how to blend different groups of people together seamlessly, but longing for it unfortunately does not make it so.
In response to a previous query, I thought I'd tell you that we've decided on two games for the shower, neither of which require much of a spotlight or too much intense participation (which I am not sure we can count on from our guests) - a "How Old Am I?" guessing game, with pictures of the bride at various ages and stages, and a "Design a Wedding Cake" coloring thing that has so far only been hilarious in the number of ways my sister and I have miscommunicated about it.
Originally, I'd read something about creating cakes out of Play Doh, which I thought sounded like fun and was different enough that not everybody would have played it a million times already (toilet paper dress making, I'm looking at you!) We decided to scale it back a little, I think mostly because not everybody here is a big Play Doh fan (boo hiss: Play Doh is awesome!), and do models instead. I told my sister that there were cake templates that we could use, and then people could decorate their own and have SisterCh judge which was best. Now, what I was talking about was doing little Styrofoam models of cake - actually called 'cake templates' (the kind people use when they're learning to frost cakes) with real frosting and what not - still kind of messy, but silly enough that people were having fun. But what SisterJ (the matron (ha!) of honor) heard was templates - like a paper drawing of a cake, that we would then have people decorate. So I went out and bought 20 pastry bags, and the look she gave me when I took them out of the bag was as if I told her I had decided that I would wear my underwear on the outside of my clothing from now on. In the interest of space and cleanliness, we decided to go with the coloring page version of the game, and I'm hoping it will still have enough silliness in it to make it fun and worthwhile.
I'm off to finish printing the pictures for the How Old Am I game, as we speak, so wish me luck. Let's hope whatever any of us wind up doing this weekend will be fun and fruitful!
Friday, April 29, 2011
Getting ready...
Oh my goodness you guys, I just went through all my previous BADD posts, and they're all so negative. I'm going to try to come up with something more positive, but I'm in a pretty gnarly mood, so the rant I've got rolling around in my head right now might be it. :shrug: it's Ableism, it's not all going to be shiny and nice, right? Anyways, please consider Blogging Against Disabilism, this Sunday May 1, 2011. You can sign up here, at the beautiful Goldfish's place.
Sunday, October 03, 2010
A happy update, for some change of pace
Hey everybody - just a quick not to say that things are going well here. Grandmother is home, and much improved. She's making me a little crazy because she gets up and walks away without her walker (which they've given her because her balance and leg strength are still chancy), but other than that, she's being a model patient. She's got a little bit of forgetfulness (which is frustrating UJ to no end, because of the repeated questions), and she's pretty tired all the time, but 20 days post TIA, her improvement is pretty remarkable, in my opinion.
I'm still staying here, for a number of reasons, including my own piece of mind. Ok, mostly for my own piece of mind. She's doing so much better, but she's still "kinda wobbly" (as Thumper would say), and both she and UJ seem a little overwhelmed by all the VNA / OT / PT appointments and evaluations, her new medication list, and all of the things that go into a recovery like this. Even though I know just about zero about recovery - as I have never achieved it myself - recuperation and readjustment following hospital stays and times your body has not behaved itself are pretty much my speciality, so I'm glad to help, however I can.
Right now I am concentrating on making sure that the right questions get asked, making sure that someone remembers the answers as well as I think they should (Hint: write everything down!). On insisting that the visitors treat my grandmother with respect - you wouldn't believe how many of the people just come in and start poking at her: How about you introduce yourself? How about you ask for permission? How about you remember that the patient is a PERSON? That they leave their contact information and a schedule of upcoming appointments (even if it's tentative, at least give us a day you might be coming back).
I've talked UJ through installing grab bars in the tub (even though it's upstairs), and reminded him that the PT suggests a bigger shower chair and a handheld shower hose (both are now purchased). I have explained how much better a pill box system would be than their old "Let's look at this list 16 times a day" system, and then watched UJ try to explain it to Grandmother this morning. UJ straightened the brick walk in the back yard and installed a handrail on the two steps out there (even though I tried to get him to use concrete so it'd be smoother, I got vetoed there). I've finally talked them into rolling up the rugs so she'll stop having to worry about them (That's not getting done for a few days, though, so I still have to watch her getting caught on the corners till then). I sit in my chair and anxiously follow her up the stairs with my eyes when she goes up for bed at night ---> She's supposed to wait for UJ to be behind her, but when he carries the walker up to put it at the top of the steps, she starts right up anyways. Another of my suggestions, that she take the pull out couch down here, was swiftly shot down and will not be entertained. I put the cream on her back every day, and watch as the rash she got from the unusual hospital detergent starts to finally fade.
Besides that, Grandmother shouldn't be left alone until they hook up the lifeline thing (even SHE remembers the "I've fallen and I can't get up" commercial: it was the first thing she said when they suggested it), so I'm still being useful that way - at the very least UJ can run to the supermarket and get something for dinner without worrying that she'll be hurt and unable to get help. Yesterday he went to mass, giving me the whole "I have my cell phone, you know how to dial 9-1-1, these are the signs of a stroke, are you sure you'll be alright?" speech, even though I am 31 years old. I understand his nervousness though: I don't know how I'll manage when I go home, because he hates the phone, almost as much as he hates asking for help, so if I'm not Right Here, then I know that he won't call and say he or she needs something.
So I'll stay for now. Even though I miss home, and my people, and my big comfy bed, and Lil Girl days, and my non-tivo tivo. But I don't want to leave till I'm sure they can manage, or until I absolutely have to (because I can't manage anymore), which ever comes first. (Although I am definitely going home for a shower tomorrow, come hell or high water.)
Hope your weekends have gone well, and that your Monday finds you ready to face whatever comes your way.
I'm still staying here, for a number of reasons, including my own piece of mind. Ok, mostly for my own piece of mind. She's doing so much better, but she's still "kinda wobbly" (as Thumper would say), and both she and UJ seem a little overwhelmed by all the VNA / OT / PT appointments and evaluations, her new medication list, and all of the things that go into a recovery like this. Even though I know just about zero about recovery - as I have never achieved it myself - recuperation and readjustment following hospital stays and times your body has not behaved itself are pretty much my speciality, so I'm glad to help, however I can.
Right now I am concentrating on making sure that the right questions get asked, making sure that someone remembers the answers as well as I think they should (Hint: write everything down!). On insisting that the visitors treat my grandmother with respect - you wouldn't believe how many of the people just come in and start poking at her: How about you introduce yourself? How about you ask for permission? How about you remember that the patient is a PERSON? That they leave their contact information and a schedule of upcoming appointments (even if it's tentative, at least give us a day you might be coming back).
I've talked UJ through installing grab bars in the tub (even though it's upstairs), and reminded him that the PT suggests a bigger shower chair and a handheld shower hose (both are now purchased). I have explained how much better a pill box system would be than their old "Let's look at this list 16 times a day" system, and then watched UJ try to explain it to Grandmother this morning. UJ straightened the brick walk in the back yard and installed a handrail on the two steps out there (even though I tried to get him to use concrete so it'd be smoother, I got vetoed there). I've finally talked them into rolling up the rugs so she'll stop having to worry about them (That's not getting done for a few days, though, so I still have to watch her getting caught on the corners till then). I sit in my chair and anxiously follow her up the stairs with my eyes when she goes up for bed at night ---> She's supposed to wait for UJ to be behind her, but when he carries the walker up to put it at the top of the steps, she starts right up anyways. Another of my suggestions, that she take the pull out couch down here, was swiftly shot down and will not be entertained. I put the cream on her back every day, and watch as the rash she got from the unusual hospital detergent starts to finally fade.
Besides that, Grandmother shouldn't be left alone until they hook up the lifeline thing (even SHE remembers the "I've fallen and I can't get up" commercial: it was the first thing she said when they suggested it), so I'm still being useful that way - at the very least UJ can run to the supermarket and get something for dinner without worrying that she'll be hurt and unable to get help. Yesterday he went to mass, giving me the whole "I have my cell phone, you know how to dial 9-1-1, these are the signs of a stroke, are you sure you'll be alright?" speech, even though I am 31 years old. I understand his nervousness though: I don't know how I'll manage when I go home, because he hates the phone, almost as much as he hates asking for help, so if I'm not Right Here, then I know that he won't call and say he or she needs something.
So I'll stay for now. Even though I miss home, and my people, and my big comfy bed, and Lil Girl days, and my non-tivo tivo. But I don't want to leave till I'm sure they can manage, or until I absolutely have to (because I can't manage anymore), which ever comes first. (Although I am definitely going home for a shower tomorrow, come hell or high water.)
Hope your weekends have gone well, and that your Monday finds you ready to face whatever comes your way.
Monday, September 27, 2010
A learning experience is one of those things that says, “You know that thing you just did? Don’t do that"*
I can't believe I've left this post up for this long, since, in my head, I've written about thirty six posts since last week. Unfortunately for my blog (or perhaps fortunately, since my brain isn't exactly in tip top condition lately), my computer doesn't travel as well as I would like it to, and there's no internet connection at the rehab. I don't know what their problem is, since, if I were using their facilities, I would definitely need the distraction.
Anyways, my grandmother is doing very well, thank you: She's got a discharge date set for this Thursday, and her improvements have been quite great and quite quick. She still needs to use the walker, which is absolutely going to be a point of contention once she's home and isn't on her best "let me out of here/ see what a good patient I am!" behavior, but we'll deal with that when we get to it. In the meantime, she's doing really well. (Thankfully.)
There's been a lot of other family drama - some of which I can't talk about here and some of which I just don't have the energy to go into right now - but I have been trying to keep what energy I do have focused on caring for my grandmother and putting it where it can do the most good.
As for me, I'm ... I don't even know how I am. Up in the air, like one of those little juggling balls, going round and round and up and down under somebody else's control. During the (not continuous, grand total of) forty-five minutes I slept the other night, I had a very vivid dream of myself, sitting in my uncle's car in the passenger seat. We were making the twenty minute trip we make four times a day (twice up, twice back, because he refuses to eat any place but home, and don't even get me started on that), traveling the now-familiar route. In the dream, I seemed normal and everything was fine, until suddenly, I just reached over and pulled the door handle - very calmly - and - like someone escaping a kidnapping - ninja-rolled my way out of the car. I landed on my feet and just walked away.
It wasn't until I felt the gigantic surge of relief in the dream that I realized just how hard this whole situation has been. How out of my own control I feel my life has gotten - not just right this minute, but in the grand scheme of things.
And there are, obviously, things in my life that I can do nothing about - my grandmother's stroke, my own illnesses, having to move, losing people I love - Those things are going to be there, are going to happen, no matter how hard I try to will them away, no matter how much I don't want them to be. I can't control those things. But I kind of just realized that I'm still trying to control them anyways... and that I'm fighting a losing battle.
Which doesn't mean I'm giving up - far from it. In fact, it just means that I have to do a better job of figuring out what I am in control of, and what I do have power over, so I can do a better job of focusing on those things.
I know: this seems like the simplest thing ever, and it also seems like something I should have gotten into my thick skull long before now, but it really is an ongoing thing - it isn't as if I haven't been working on this for the past fifteen years, it's more like I am re-realizing that I am focusing my energies in the wrong direction, and that I need to pay more attention to fixing that.
The more I worry about how nobody else is coming to visit Grandmother - I am one of seventeen grandchildren, who came from 9 children originally - the more upset I get. (Yes, the 17 and 9 are spread out across the country, but there are at least eight of us within easily driven distance, and at least three more of her kids. Total who've shown up? Three - each visiting once, for a relatively short period of time.) But getting mad about it, or feeling resentful that they're not going out of their way to get here does me no good. It does her no good. All I have to do is show up, get the word out, keep doing what I can do, and let the rest go. If other people make (what I see as) poor choices, then it's their loss. It's their decision, and there's nothing I can do to make them realize that they are missing out. I don't understand it, but I don't have to, either. I just have to be there for her, and hope that it is enough.
The more I fret and churn over a vicious fight between my two sisters, the less helpful I am to anybody - On a recent day, I managed to "ruin" both of their days by bringing up the other one, and ended every conversation in tears. It's not helping them, and it certainly isn't helping me. I won't stop trying to help them figure out how to move on (I don't think I can: it would hurt too much), but I have to realize that it isn't in my control. I can only do what I think needs to be done, say what I think needs to be said, and then leave the rest up to them. If they're not ready to hear it - as is obvious by the fact that I always wind up hurting them and myself when I try to get my point across - then I can't do anything more but be here when they're ready for me.
I can chatter till the cows come home, because empty space in a conversation makes me a tad bit uncomfortable, but I'm never going to make my uncle say a single word he doesn't want to say. So I better learn to appreciate that there is such a thing as companionable silence, and figure out how to enjoy it.
Now doesn't all that sound so lovely and mature and easy?
Yeah: the writing of it always makes me sound like I've figured it all out, but in reality? I'm going bit by bit, trial by trial, day by day.
(Although I have really figured out how to like silence. Sometimes I write the best blog posts in my head when he and I are just sitting in the same space, being together, but not having to say anything - how'd you like this one?)
*Douglas Adams
Anyways, my grandmother is doing very well, thank you: She's got a discharge date set for this Thursday, and her improvements have been quite great and quite quick. She still needs to use the walker, which is absolutely going to be a point of contention once she's home and isn't on her best "let me out of here/ see what a good patient I am!" behavior, but we'll deal with that when we get to it. In the meantime, she's doing really well. (Thankfully.)
There's been a lot of other family drama - some of which I can't talk about here and some of which I just don't have the energy to go into right now - but I have been trying to keep what energy I do have focused on caring for my grandmother and putting it where it can do the most good.
As for me, I'm ... I don't even know how I am. Up in the air, like one of those little juggling balls, going round and round and up and down under somebody else's control. During the (not continuous, grand total of) forty-five minutes I slept the other night, I had a very vivid dream of myself, sitting in my uncle's car in the passenger seat. We were making the twenty minute trip we make four times a day (twice up, twice back, because he refuses to eat any place but home, and don't even get me started on that), traveling the now-familiar route. In the dream, I seemed normal and everything was fine, until suddenly, I just reached over and pulled the door handle - very calmly - and - like someone escaping a kidnapping - ninja-rolled my way out of the car. I landed on my feet and just walked away.
It wasn't until I felt the gigantic surge of relief in the dream that I realized just how hard this whole situation has been. How out of my own control I feel my life has gotten - not just right this minute, but in the grand scheme of things.
And there are, obviously, things in my life that I can do nothing about - my grandmother's stroke, my own illnesses, having to move, losing people I love - Those things are going to be there, are going to happen, no matter how hard I try to will them away, no matter how much I don't want them to be. I can't control those things. But I kind of just realized that I'm still trying to control them anyways... and that I'm fighting a losing battle.
Which doesn't mean I'm giving up - far from it. In fact, it just means that I have to do a better job of figuring out what I am in control of, and what I do have power over, so I can do a better job of focusing on those things.
I know: this seems like the simplest thing ever, and it also seems like something I should have gotten into my thick skull long before now, but it really is an ongoing thing - it isn't as if I haven't been working on this for the past fifteen years, it's more like I am re-realizing that I am focusing my energies in the wrong direction, and that I need to pay more attention to fixing that.
The more I worry about how nobody else is coming to visit Grandmother - I am one of seventeen grandchildren, who came from 9 children originally - the more upset I get. (Yes, the 17 and 9 are spread out across the country, but there are at least eight of us within easily driven distance, and at least three more of her kids. Total who've shown up? Three - each visiting once, for a relatively short period of time.) But getting mad about it, or feeling resentful that they're not going out of their way to get here does me no good. It does her no good. All I have to do is show up, get the word out, keep doing what I can do, and let the rest go. If other people make (what I see as) poor choices, then it's their loss. It's their decision, and there's nothing I can do to make them realize that they are missing out. I don't understand it, but I don't have to, either. I just have to be there for her, and hope that it is enough.
The more I fret and churn over a vicious fight between my two sisters, the less helpful I am to anybody - On a recent day, I managed to "ruin" both of their days by bringing up the other one, and ended every conversation in tears. It's not helping them, and it certainly isn't helping me. I won't stop trying to help them figure out how to move on (I don't think I can: it would hurt too much), but I have to realize that it isn't in my control. I can only do what I think needs to be done, say what I think needs to be said, and then leave the rest up to them. If they're not ready to hear it - as is obvious by the fact that I always wind up hurting them and myself when I try to get my point across - then I can't do anything more but be here when they're ready for me.
I can chatter till the cows come home, because empty space in a conversation makes me a tad bit uncomfortable, but I'm never going to make my uncle say a single word he doesn't want to say. So I better learn to appreciate that there is such a thing as companionable silence, and figure out how to enjoy it.
Now doesn't all that sound so lovely and mature and easy?
Yeah: the writing of it always makes me sound like I've figured it all out, but in reality? I'm going bit by bit, trial by trial, day by day.
(Although I have really figured out how to like silence. Sometimes I write the best blog posts in my head when he and I are just sitting in the same space, being together, but not having to say anything - how'd you like this one?)
*Douglas Adams
Saturday, September 18, 2010
"If I had my way I'd make health catching instead of disease."*
First off, I want to thank all of you for your very kind thoughts about my grandmother. She is much improved, and has moved from the hospital to a local (ish) rehab, where she's getting some much needed help with her leg strength and balance. Aside from being a bit more wobbly (which was an issue prior to her fall), there seem to be very few ill lasting effects. Knock wood, throw salt, praise the god/goddess/ancient deity/flying spaghetti monster of your choice. I do really appreciate the support I've received here, and can't tell you how much. We're working through it. Slow and steady.
One of the things I've been spending a good amount of time pondering during the endless hours of "hurry up and wait" or "the doctor/therapist/food will be here any time now" that have accompanied this experience is the shocking clarity of learning just how closely my grandmother's condition and my condition resemble each other. A few of the correlations I've seen just today -
So I can see the differences, and the parallels, and I have to wonder: how much of this is in my genes? How much of this - whatever this turns out to be - is in everybody's genes, just sitting there, only coming out when something goes wrong? Because I can also see the similarities between me and my mum (who's got ulcerative colitis), or my sister with depression, or my other sister who developed random allergic hives for 8 months that disappeared as suddenly as they came. So how much of what's wrong with me is laying dormant (or not-dormant, as the case may be) in the people I love? And how much of it is floating around in everybody's genetic code?
It's a scary thought: Both the "why did I wind up being the lucky one" part, and the "Holy shit, what is wrong with us???" part.
The main difference between us is that my grandmother's condition - aside from her extremely sensitive skin & occasional fainting spells - waited till she was in her eighties to attack. She had a full 'before' life - with 9 kids and a husband, and the mother in law from hell, and being a nurse during WWII, and helping to raise her granddaughter when her son died, and a million other things that happened before she started to become unwell. For me, my life before - the lesser (percentage wise) portion of my life, at this point - ended at 15. Before I had the chance to do so many of the things I wanted to do, and consisted mostly of being a child, a dancer, a reader, a babysitter/big sister.
But here's where I go back to our similarities, because my grandmother - then in her eighties and now in her nineties - dealt with it. All of the inconveniences and indignities of being ill and having to figure out how to live your life the best way you know how. And - while I may not always succeed as well as she does - I'm certainly going to do my best to make that our most striking similarity: the fact that giving up ain't really an option. That we are not the illnesses we've been battling, or whatever disabilities we may have, but only ourselves.
And that the weaknesses we've got in common don't matter near as much as the strengths we share.
*Robert Ingersoll
One of the things I've been spending a good amount of time pondering during the endless hours of "hurry up and wait" or "the doctor/therapist/food will be here any time now" that have accompanied this experience is the shocking clarity of learning just how closely my grandmother's condition and my condition resemble each other. A few of the correlations I've seen just today -
- Because she has an atrial fibrillation, her heart rate and pulse can drop dramatically, and she's been on multiple blood pressure meds to help control this. For me, that's the POTS, and the drugs she's been on? I've been on the majority of them too.
- She has weakness and swelling in her legs, and they're not really sure why. Ditto here.
- She has freezing cold feet - sometimes requiring three or four pairs of socks. I also have this problem (although it's not as constant as hers, and is complicated by the burning on the bottom of my feet sensation I get too), and most days, if you put your hand on my upper thigh and slowly move it down, you can feel about a 10 degree temperature drop by the time you get to my icy cold toes.
- She has an unexplained (but attributed to her heart condition) dizziness and vertigo; I have an unexplained (but attributed to my POTS) dizziness and vertigo.
- Neither one of us can stand, unaided, and straight. We invariably begin to tip after just a few seconds.
- She's passed out more than once - her history of fainting spells stretches back to when she was a teenager. Want to take a guess when mine started?
- She's weak and she's tired a lot, and they like to say things like "Well, you're ninety three, what do you expect?" when she complains about it. I'm tired a lot, and unreasonably weak, and they like to say things like "Well, you've got chronic health conditions, what do you expect?"
- We've both learned to sit at the edge of the bed, feet dangling for a minute, before we dare to get up. (And by 'learned', I mean to say we both remember it when we feel like it, and sometimes screw the consequences when we don't.)
- We both have extremely sensitive skin - her back has been as hot as coals ever since she was admitted to the ER, due to some combination of hospital/rehab soap and laundry detergent. They gave her some medicine to put on it, which I've been helping her with, but the rash I got on my hands spread like fire all the way up one of my arms, so I had to start using gloves to put it on.
- Neither one of us likes to be in the position of asking for help, and get frustrated by people telling us what/how we should be doing things. (Oh wait: this is unrelated to our medical conditions unless "stubborn as a jack ass" is now listed as a medical condition.)
- Same goes for physical therapy and occupational therapy. (See above point, re: jackassery.)
So I can see the differences, and the parallels, and I have to wonder: how much of this is in my genes? How much of this - whatever this turns out to be - is in everybody's genes, just sitting there, only coming out when something goes wrong? Because I can also see the similarities between me and my mum (who's got ulcerative colitis), or my sister with depression, or my other sister who developed random allergic hives for 8 months that disappeared as suddenly as they came. So how much of what's wrong with me is laying dormant (or not-dormant, as the case may be) in the people I love? And how much of it is floating around in everybody's genetic code?
It's a scary thought: Both the "why did I wind up being the lucky one" part, and the "Holy shit, what is wrong with us???" part.
The main difference between us is that my grandmother's condition - aside from her extremely sensitive skin & occasional fainting spells - waited till she was in her eighties to attack. She had a full 'before' life - with 9 kids and a husband, and the mother in law from hell, and being a nurse during WWII, and helping to raise her granddaughter when her son died, and a million other things that happened before she started to become unwell. For me, my life before - the lesser (percentage wise) portion of my life, at this point - ended at 15. Before I had the chance to do so many of the things I wanted to do, and consisted mostly of being a child, a dancer, a reader, a babysitter/big sister.
But here's where I go back to our similarities, because my grandmother - then in her eighties and now in her nineties - dealt with it. All of the inconveniences and indignities of being ill and having to figure out how to live your life the best way you know how. And - while I may not always succeed as well as she does - I'm certainly going to do my best to make that our most striking similarity: the fact that giving up ain't really an option. That we are not the illnesses we've been battling, or whatever disabilities we may have, but only ourselves.
And that the weaknesses we've got in common don't matter near as much as the strengths we share.
*Robert Ingersoll
Tuesday, September 14, 2010
Let me tell you something...
(said in my very best Fire Marshall Bill voice): I just don't know what to tell you.
My head is full of so many things it is like a buzzing, humming swirling hive of activity. There isn't any space unoccupied by some new terror or old enemy or flashing through like lightening bolts or scrolling through like a news crawl - "This just in: You are Still Hurting! And reports are coming in of even more affected areas - Devastation spreads! Stay tuned to this channel for further developments."
Basically, the inside of my head is on overload, and that makes it kind of difficult to weed out enough (logical, legible & un-loopy enough ) bits and pieces to write something. Anything. Anything at all that doesn't wind up reading like the inside of my head - a lot of words and letters that are seemingly unconnected and yet make entirely too much sense.
So that's where my head is at. My body, at present, is camping on the Pull Out Couch of Death (tm) at my grandmother's house. Again. As I was laying on it in the dark last night, I was thinking back: I didn't have a lot of sleepovers here as a child (probably because our houses were about 3 minutes apart from each other), but occasionally, when my dad was on leave from the Navy, my brother and I would stay for a night or a weekend. We must have slept on this very same pull out couch, because there's no way this thing is less than 30 years old, although the one we slept in seemed huge to me then, and this thing feels like a postage stamp now, compared to my queen sized cloud of awesome at home.
I can remember laying on this very same bed, in the almost total dark - my brother beside me, his foot twitching back and forth as it does every time he goes to sleep; the street light shining in through the cracks in the shades, just enough light to keep it from being pitch dark; an intense and eerie quiet all around that never seemed to happen at my house no matter what time it was - and being petrified of the odd shadows, the different creaks and groans of the house, the ticking of the clock.
I must have been under ten (maybe even more like 5 or 6), but the memory came back to me so clearly last night - just the feeling of absolute, frozen, "I can't go to sleep because I might never wake up" terror. I was sometimes (ok, maybe most of the time) anxious as a child, and once my brain latched on to something - even if I knew it was ridiculous, outlandish, and totally improbable - I just couldn't let it go. It would swirl around in there like a tornado, picking up bits and pieces of other worries and wishes and whatevers as it spun ever faster and grew bigger until I thought I would explode from it. (This is not that different from how I am now, come to think of it: I guess we don't grow out of as many things as we would like to believe we do.)
The fears of my ten year old self seemed laughable last night - the creaks of an old house are nothing compared to the strains of an older life.
I have been staying here for four days, as the sibling switching that occurs at my house has required a new paint job in one particular room, and I don't know how much longer I'll stay. My grandmother has been in the hospital for all of those four days, and we don't know how much longer she'll stay there, either.
On Friday night, my uncle heard a thump upstairs in her room, and he went up to check on her, and found her on the floor, tangled in her blankets. When he got to her, he realized he couldn't understand what she was saying, so he got down on the floor and took a good look at her face, and saw that the left side was drooping. I think everybody recognizes that symptom as what it turned out to be - my Grandmother had had a stroke.
As it turns out, she had what is (apparently) the best kind of stroke - a mini-stroke, a temporary stroke, a Transient Ischemic Attack. At the hospital, they were able to treat her quickly, and she has since recovered to about 85% of her normal self - her speech returned quickly, the drooping went away, she is able to breathe and swallow and sit up and stand all on her own. The only physical signs of her stroke are a large bruise - which takes up a quarter of her face - she got when she fell out of bed, and some lingering weakness and swelling in her left leg, that the doctors are pretty sure will go down on its own.
She is bored and frustrated by her lack of control at the hospital (I come by it naturally, see?), and she's tired because "the people who work here have no respect for night time hours," and she's a little bit embarrassed and scared, I think, too, which she has shown by being pissed at my uncle for making the call to the ambulance in the first place. But she's herself, and she's ready to come home, and she doesn't understand what's taking them so long to let her go.
She's alright, is what I'm saying: She's doing a lot better than the doctors said she would be doing, and excellent as far as I'm concerned. But here's the thing - my brain just can't shut it off. It's got this worry wrapped up in the tornado now, this huge "She's 93 years old" funnel cloud full of "But what if"s and "I'll stay here forever if you need me to" and "I can't handle this" and "God I hate hospitals, even if her room is better than most hotel rooms I've stayed in, why the hell does it have a fake fireplace" and "Holy shit, I really can't do this again" and a million more swirling swishing sounds and sights and memories and realities and fears.
It makes me long for the worries of ten year old me, that's for sure.
In the meantime I try to be helpful: try to answer the phone and pass out the updates to the family scattered around the country; try to convince UJ that I can make dinner for myself - and for him - and that if he needs to stay at the hospital all day, I'll be fine; try to make the doctors who come into her room speak louder because she doesn't have her hearing aids in and she needs them for a reason; try to ask questions and think of solutions (the rugs at home can all come up, if that's what we need to do/the pull out couch needs a much better mattress if she's thinking of sleeping on it long term) to all the little issues that are popping up; try to rub lotion on her back because I also come by my sensitive skin naturally, and whatever they wash the sheets in has given her a rash (even though the lotion she uses to soothe her sensitive skin leaves my sensitive skin raw, red and burning); try to do something - ANYTHING - to make myself of use, and to give me something else to focus on, a stopper to keep that tornado from spinning so fast that it carries me away with it.
My head is full of so many things it is like a buzzing, humming swirling hive of activity. There isn't any space unoccupied by some new terror or old enemy or
Basically, the inside of my head is on overload, and that makes it kind of difficult to weed out enough (logical, legible & un-loopy enough ) bits and pieces to write something. Anything. Anything at all that doesn't wind up reading like the inside of my head - a lot of words and letters that are seemingly unconnected and yet make entirely too much sense.
So that's where my head is at. My body, at present, is camping on the Pull Out Couch of Death (tm) at my grandmother's house. Again. As I was laying on it in the dark last night, I was thinking back: I didn't have a lot of sleepovers here as a child (probably because our houses were about 3 minutes apart from each other), but occasionally, when my dad was on leave from the Navy, my brother and I would stay for a night or a weekend. We must have slept on this very same pull out couch, because there's no way this thing is less than 30 years old, although the one we slept in seemed huge to me then, and this thing feels like a postage stamp now, compared to my queen sized cloud of awesome at home.
I can remember laying on this very same bed, in the almost total dark - my brother beside me, his foot twitching back and forth as it does every time he goes to sleep; the street light shining in through the cracks in the shades, just enough light to keep it from being pitch dark; an intense and eerie quiet all around that never seemed to happen at my house no matter what time it was - and being petrified of the odd shadows, the different creaks and groans of the house, the ticking of the clock.
I must have been under ten (maybe even more like 5 or 6), but the memory came back to me so clearly last night - just the feeling of absolute, frozen, "I can't go to sleep because I might never wake up" terror. I was sometimes (ok, maybe most of the time) anxious as a child, and once my brain latched on to something - even if I knew it was ridiculous, outlandish, and totally improbable - I just couldn't let it go. It would swirl around in there like a tornado, picking up bits and pieces of other worries and wishes and whatevers as it spun ever faster and grew bigger until I thought I would explode from it. (This is not that different from how I am now, come to think of it: I guess we don't grow out of as many things as we would like to believe we do.)
The fears of my ten year old self seemed laughable last night - the creaks of an old house are nothing compared to the strains of an older life.
I have been staying here for four days, as the sibling switching that occurs at my house has required a new paint job in one particular room, and I don't know how much longer I'll stay. My grandmother has been in the hospital for all of those four days, and we don't know how much longer she'll stay there, either.
On Friday night, my uncle heard a thump upstairs in her room, and he went up to check on her, and found her on the floor, tangled in her blankets. When he got to her, he realized he couldn't understand what she was saying, so he got down on the floor and took a good look at her face, and saw that the left side was drooping. I think everybody recognizes that symptom as what it turned out to be - my Grandmother had had a stroke.
As it turns out, she had what is (apparently) the best kind of stroke - a mini-stroke, a temporary stroke, a Transient Ischemic Attack. At the hospital, they were able to treat her quickly, and she has since recovered to about 85% of her normal self - her speech returned quickly, the drooping went away, she is able to breathe and swallow and sit up and stand all on her own. The only physical signs of her stroke are a large bruise - which takes up a quarter of her face - she got when she fell out of bed, and some lingering weakness and swelling in her left leg, that the doctors are pretty sure will go down on its own.
She is bored and frustrated by her lack of control at the hospital (I come by it naturally, see?), and she's tired because "the people who work here have no respect for night time hours," and she's a little bit embarrassed and scared, I think, too, which she has shown by being pissed at my uncle for making the call to the ambulance in the first place. But she's herself, and she's ready to come home, and she doesn't understand what's taking them so long to let her go.
She's alright, is what I'm saying: She's doing a lot better than the doctors said she would be doing, and excellent as far as I'm concerned. But here's the thing - my brain just can't shut it off. It's got this worry wrapped up in the tornado now, this huge "She's 93 years old" funnel cloud full of "But what if"s and "I'll stay here forever if you need me to" and "I can't handle this" and "God I hate hospitals, even if her room is better than most hotel rooms I've stayed in, why the hell does it have a fake fireplace" and "Holy shit, I really can't do this again" and a million more swirling swishing sounds and sights and memories and realities and fears.
It makes me long for the worries of ten year old me, that's for sure.
In the meantime I try to be helpful: try to answer the phone and pass out the updates to the family scattered around the country; try to convince UJ that I can make dinner for myself - and for him - and that if he needs to stay at the hospital all day, I'll be fine; try to make the doctors who come into her room speak louder because she doesn't have her hearing aids in and she needs them for a reason; try to ask questions and think of solutions (the rugs at home can all come up, if that's what we need to do/the pull out couch needs a much better mattress if she's thinking of sleeping on it long term) to all the little issues that are popping up; try to rub lotion on her back because I also come by my sensitive skin naturally, and whatever they wash the sheets in has given her a rash (even though the lotion she uses to soothe her sensitive skin leaves my sensitive skin raw, red and burning); try to do something - ANYTHING - to make myself of use, and to give me something else to focus on, a stopper to keep that tornado from spinning so fast that it carries me away with it.
Tuesday, April 13, 2010
I did mention, right,
that I hate doctors?
So, you may remember that I was all on board train "face surgery" as much as any person could be anyways, when last we discussed it. Well, today I had some (unrelated) blood tests, and my liver came back SNAFU. My liver is like that - sometimes, it is fine and dandy, other times it grows things named after cartoon characters from the 1980s (Looking back, I realize that I was not actually writing this blog way back when I developed my hemangioma, which is pronounced exactly as it is spelled: He-Man-Ge-Oma, but that's what I am referring to). It has been labeled fatty (which hurt both our feelings), been ruled out as a donor organ, put on (and taken off of) various medications, and sends sudden, terrifyingly high bad cholesterol numbers to scare lab techs into making the doctor call me back on the very same day. Of course, the fact that those cholesterol numbers also drop dramatically every other time doesn't seem to bother them, but for right now, I'm supposed to be impressed that they are "startlingly high" for someone so young. (I'm not impressed, or bothered, and will just wait till next time before I panic, thank you very much.)
But aside from the cholesterol, my liver enzymes are elevated, which means ... what? Something. Maybe. Nothing? They are Not Sure. They want More Tests. They are Reviewing My Records. - Or, they will be doing all of that, they promise, when they return to the office in a Week and a Half. :sigh:
Which means the sinus surgery may have to be postponed, which I am not pleased about because, well, now that I am on board the train, I would like it to leave as soon as possible, so that I can get off of it as soon as possible. I do not like waiting. I do not like new problems to pop-up when I do not have the energy to deal with them. I do not need some new Skeletor to face, and I'd rather not have to deal with a recurrence of his arch-enemy either (Because, although all that that required was monitoring, liver ultrasounds - any ultrasounds - and me of the FM pain/tender body parts, do not get along well).
I'm just having the kind of the week where things seem to be crumbling/sucking no matter what I do... things that start off with the best of intentions are suddenly horrible and poisonous, and I have no idea where they went wrong or how to fix them.
So when the doctor - my primary care, whom I do not have much faith in at all - called and said "This is a problem. But I'm not going to be here to help you figure it out for two weeks", I wanted to dissolve into a puddle. I mean, I know, in my head, that there are things I can do - like calling the surgeon or Zack in that time, just so I know what their take on the whole thing is - but right now, all I want is for all the complications to Go Away.
Or, maybe I could go away: Where is Swift Wind when you needherhim?
(Did you know he was a he? I didn't.)
So, you may remember that I was all on board train "face surgery" as much as any person could be anyways, when last we discussed it. Well, today I had some (unrelated) blood tests, and my liver came back SNAFU. My liver is like that - sometimes, it is fine and dandy, other times it grows things named after cartoon characters from the 1980s (Looking back, I realize that I was not actually writing this blog way back when I developed my hemangioma, which is pronounced exactly as it is spelled: He-Man-Ge-Oma, but that's what I am referring to). It has been labeled fatty (which hurt both our feelings), been ruled out as a donor organ, put on (and taken off of) various medications, and sends sudden, terrifyingly high bad cholesterol numbers to scare lab techs into making the doctor call me back on the very same day. Of course, the fact that those cholesterol numbers also drop dramatically every other time doesn't seem to bother them, but for right now, I'm supposed to be impressed that they are "startlingly high" for someone so young. (I'm not impressed, or bothered, and will just wait till next time before I panic, thank you very much.)
But aside from the cholesterol, my liver enzymes are elevated, which means ... what? Something. Maybe. Nothing? They are Not Sure. They want More Tests. They are Reviewing My Records. - Or, they will be doing all of that, they promise, when they return to the office in a Week and a Half. :sigh:
Which means the sinus surgery may have to be postponed, which I am not pleased about because, well, now that I am on board the train, I would like it to leave as soon as possible, so that I can get off of it as soon as possible. I do not like waiting. I do not like new problems to pop-up when I do not have the energy to deal with them. I do not need some new Skeletor to face, and I'd rather not have to deal with a recurrence of his arch-enemy either (Because, although all that that required was monitoring, liver ultrasounds - any ultrasounds - and me of the FM pain/tender body parts, do not get along well).
I'm just having the kind of the week where things seem to be crumbling/sucking no matter what I do... things that start off with the best of intentions are suddenly horrible and poisonous, and I have no idea where they went wrong or how to fix them.
So when the doctor - my primary care, whom I do not have much faith in at all - called and said "This is a problem. But I'm not going to be here to help you figure it out for two weeks", I wanted to dissolve into a puddle. I mean, I know, in my head, that there are things I can do - like calling the surgeon or Zack in that time, just so I know what their take on the whole thing is - but right now, all I want is for all the complications to Go Away.
Or, maybe I could go away: Where is Swift Wind when you need
(Did you know he was a he? I didn't.)
Sunday, January 03, 2010
"Feelings of worth can flourish only in an atmosphere where individual differences are appreciated, mistakes are tolerated, communication is open,
and rules are flexible -- the kind of atmosphere that is found in a nurturing family." - Virginia Satir
If you've been here for a while, then you know that I don't do New Year's Resolutions. I never really did, because I know how my brain works: I spend a lot of time coming up with resolutions, figuring out ways to accomplish them, figuring out ways to avoid accomplishing them, and then feeling guilty about breaking them. It's a vicious cycle that takes place approximately 742 times throughout the year, so I don't need an extra, mandatory date to create issues for myself.
Instead, taking a cue from Spoon Theory creator Christine Miserando, I pick one word that I try to focus on over the course of the year.
In 2008, the word was closer.
Last year, even though I didn't declare it here, the word I kept coming back to was breathe, especially since the year started off with us not knowing where we were going to be living, and then I spent 4.5 months in limbo at my Grandmother's house. Reminding myself - when I felt like I was accomplishing nothing, or that I was wasting time - that all that was absolutely required of me was breathing in and out, was a great help.
This year, I've put a lot of thought into a word that actually A) means something and B) will be easily applied (see cycle of resolutions above if you were wondering why it has to be simple). Some of the contenders were Truth, Choice, and Balance, all of which were good, but none of which seemed to be the perfect choice.
The word I came up with is Worth.
Looking at the definition of worth, I was pleased to see its roots are from Middle English, meaning to "become". Nowadays, it means the quality of something, the value of it. Something's equivalent. Something that is "good or important enough to justify" ie "advice worth taking; a place worth visiting". It can mean "excellence of character" or the esteem it deserves/garners, its "usefulness or importance". It's not just about monetary or material riches, but wealth of a different sort as well.
This year I'm going to focus on what things are worth, in a real and honest way. I'm going to think about what things are equal to, where excellence is actually found, and whether or not I'm truly valuing that excellence.
I need to be honest in ascribing worth - to things (Am I holding on to junk? Am I stockpiling things instead of valuing what I already have?); to people (Is it really worth another argument? Am I giving certain relationships their due or shortchanging them?); to time (What am I really spending time on vs what I want to spend time on. What is my time worth to me - and how can I show other people it's value?); to everyday actions (Is the taste of what I am eating worth the consequences for eating it? Is staying up all night typing the best way to be worth something in the morning? Since I know I won't take my pills regularly if I don't fill in those little days, isn't it worth it to fill in those little days even though I hate that job?); to the type of person I am trying to be (Am I trustworthy? Am I worth the effort it requires to be my friend? Am I sharing the true me with people who have proven worthy, or am I holding back?)... There are a million areas I need to look at in my life, a million places I could be putting what little energy I have to better use. So I'm going to try to be constantly asking myself... Is this worth it? What is this worth?
I think that living with chronic illnesses is all about asking this question - that there's so often a give and take, that there are so many reactions for every action. And, after a certain point, it gets overwhelming. It's scary, having to think every little thing through. It's frightening not knowing what the consequences for certain things will be. But that's not just living with a chronic illness, that's living. Period. So I have to stop being so passive about certain things, I have to start accepting the fact that the way I live - in the here and now, and the day to day - is my life, and I want to be doing as much of the choosing as I possibly can. So I need to start deciding what things are worth, what I am worth and how I can be more worthy.
It's funny, because I find that these keywords, or themes, or whatever you want to call them tend to stick with me. I still find myself asking "Does this bring me closer to my goals?" "Am I remembering to breathe?" has become almost a motto at this point. So I hope that focusing on the worth of my efforts & actions will become second nature to me by this time next year.
That seems as good a goal as any.
------------------------------------
Definitions for worth via Merriam Webster dictionary & Dictionary.com
If you've been here for a while, then you know that I don't do New Year's Resolutions. I never really did, because I know how my brain works: I spend a lot of time coming up with resolutions, figuring out ways to accomplish them, figuring out ways to avoid accomplishing them, and then feeling guilty about breaking them. It's a vicious cycle that takes place approximately 742 times throughout the year, so I don't need an extra, mandatory date to create issues for myself.
Instead, taking a cue from Spoon Theory creator Christine Miserando, I pick one word that I try to focus on over the course of the year.
In 2008, the word was closer.
Last year, even though I didn't declare it here, the word I kept coming back to was breathe, especially since the year started off with us not knowing where we were going to be living, and then I spent 4.5 months in limbo at my Grandmother's house. Reminding myself - when I felt like I was accomplishing nothing, or that I was wasting time - that all that was absolutely required of me was breathing in and out, was a great help.
This year, I've put a lot of thought into a word that actually A) means something and B) will be easily applied (see cycle of resolutions above if you were wondering why it has to be simple). Some of the contenders were Truth, Choice, and Balance, all of which were good, but none of which seemed to be the perfect choice.
The word I came up with is Worth.
Looking at the definition of worth, I was pleased to see its roots are from Middle English, meaning to "become". Nowadays, it means the quality of something, the value of it. Something's equivalent. Something that is "good or important enough to justify" ie "advice worth taking; a place worth visiting". It can mean "excellence of character" or the esteem it deserves/garners, its "usefulness or importance". It's not just about monetary or material riches, but wealth of a different sort as well.
This year I'm going to focus on what things are worth, in a real and honest way. I'm going to think about what things are equal to, where excellence is actually found, and whether or not I'm truly valuing that excellence.
I need to be honest in ascribing worth - to things (Am I holding on to junk? Am I stockpiling things instead of valuing what I already have?); to people (Is it really worth another argument? Am I giving certain relationships their due or shortchanging them?); to time (What am I really spending time on vs what I want to spend time on. What is my time worth to me - and how can I show other people it's value?); to everyday actions (Is the taste of what I am eating worth the consequences for eating it? Is staying up all night typing the best way to be worth something in the morning? Since I know I won't take my pills regularly if I don't fill in those little days, isn't it worth it to fill in those little days even though I hate that job?); to the type of person I am trying to be (Am I trustworthy? Am I worth the effort it requires to be my friend? Am I sharing the true me with people who have proven worthy, or am I holding back?)... There are a million areas I need to look at in my life, a million places I could be putting what little energy I have to better use. So I'm going to try to be constantly asking myself... Is this worth it? What is this worth?
I think that living with chronic illnesses is all about asking this question - that there's so often a give and take, that there are so many reactions for every action. And, after a certain point, it gets overwhelming. It's scary, having to think every little thing through. It's frightening not knowing what the consequences for certain things will be. But that's not just living with a chronic illness, that's living. Period. So I have to stop being so passive about certain things, I have to start accepting the fact that the way I live - in the here and now, and the day to day - is my life, and I want to be doing as much of the choosing as I possibly can. So I need to start deciding what things are worth, what I am worth and how I can be more worthy.
It's funny, because I find that these keywords, or themes, or whatever you want to call them tend to stick with me. I still find myself asking "Does this bring me closer to my goals?" "Am I remembering to breathe?" has become almost a motto at this point. So I hope that focusing on the worth of my efforts & actions will become second nature to me by this time next year.
That seems as good a goal as any.
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Definitions for worth via Merriam Webster dictionary & Dictionary.com
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