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.
Showing posts with label Bloggers. Show all posts
Showing posts with label Bloggers. Show all posts
Sunday, November 03, 2013
Sunday, August 28, 2011
Being Seen (pt1)
A while back, when my sisters were still fighting (and oh, what a miraculous, fragile peace has somehow bloomed there, and oh, what a frightening and vivid relief it is), one of them found the other's blog. The blog in question was semi-anonymous, in that I knew about it, and her husband and some friends, but she never really said to anybody "Hey: I am writing a blog - Why don't you come check it out?" Well, through some confounding sort of linkage that I am unclear on, the blog was discovered by the sister she was arguing with, and, of course, there were some ... unflattering things posted about her there. Later, in one of my many, futile peace-brokering discussions with her, she brought up something that had been written in the heat of anger, saying "If you can write something like that about someone, can you really love them?"
That discussion has had two clear impacts on my blogging - First, I've become more frightened than ever that some casual linkage, forgotten signout, or dropped conversational hint, will bring my anonymity here at NTE to a close. It's a terrifying thought for me, since I know that as myself, without the slim protection my pseudonym provides, I could never be this honest. Aside from the fact that I've opened up hidden parts of myself and shared a lot of things here that the people in my life would be quite surprised to know, I've also written more than one post in the heat of anger, said some things I would regret if they were read by the person they were written about, and what I've written would be sure to hurt some feelings.
Which brings us to the second impact - that fear of being found (which I know I must be, eventually, and here I am, coming up on 6 years blogging) is acting as a very real barrier to the honest writing I've accomplished and been proud of here. I find that I'm stumped, wanting (as always) to say what I want to say, knowing that it's my truth (even if it's only my truth in that moment, and changes immediately afterwards), but temporarily lacking the courage to accept the consequences that will come about when my anonymous bubble is burst.
The clearest example of this is the sister who already knows about my blog, and has (thankfully, sweetly, fabulously) kept it to herself for however many years she's been reading: I know there are times when I censor myself - what I'm going to talk about or not talk about, how I'm going to say it, whether I add the pros to a piece that started out more as ranting compilation of cons - because I know she's out there, among my proverbial audience. (Even though, in all honesty, I've seen her Google Readers - she has two! - and I'm pretty sure she's a zillion posts behind.... Hi SisterJ: How's January of 2013 treating us? Did we survive the Zombie-pocalypse? ;) )
Between this element of self-censorship - the fear of how others will feel about what I've said about them - and the fact that everything I want to talk about lately is all part of a big sticky, jumbled up mess that my brain just laughs at instead of trying to make sense of, I was pretty sure that I was going to be shutting down the blog - at least for a while, and maybe permanently.
It was not just that, though: It was everything - It was because every time I come I see that the footer banner is 2 years out of date, and I'm sick to death of the color scheme, and I don't have the energy to re-vamp the whole thing right now. It's that I've already said everything that could ever be said about the power of books and the suckiness of living with chronic illnesses, and I have maybe 7 readers, and aren't they sick of listening to me already?
It was a lot of bullshit, really. A lot of excuses I was letting myself get away with, because I was too scared to come here and say I was scared. That I'm stuck: again: Still. (seems like) Always. It's the reason that my last post was the easiest, and most honest thing I've written in months: because the reasons not write, not to post, not to share are always there, and wouldn't it be so much easier if I just gave up on talking to the world-at-large (on my very small scale) and just tucked it all back inside again?
Hells. No.
(But also: Absolutely.)
So I'm afraid: what of it? I'm nearly terrified of pretty much every single thing my adult life has thrown at me thus far - why should this be any different? Maybe the fact that it's getting scarier is a good thing? Because I'm doing things I ordinarily wouldn't do: Putting down truths that are hard to think, let alone write. Taking my time when I need it, even as I feel the rest of the world speeding forward without me. Letting shit go, if it doesn't matter, and not letting shit go, when it does. Being a fucking grown-up, when you come right down to it.
So that's my plan: keep plugging. Don't let the bastards get you down! Lots of cliches about overcoming obstacles!
And one way I'm going to be doing that is by setting very real, publicly posted goals: Not letting myself get away with all the excuses.
Which is one reason I'm excited to be hosting my very first every Disability Blog Carnival, should ya'll be interested in contributing/attending/watching from afar. It's going to be on September 27th, and - since I was always the kid in school who liked a little bit of a framework - I've decided to provide a non-compulsory theme to help out those who feel they want it: Being Seen. It's something I'm struggling to work out for myself, so I figured I'd ask how you all are handling it - How do you want to be seen? How are you seen? Do you feel invisible? What aren't people seeing that they need to see? Are you looking for a way to get noticed, or are you hoping that nobody will?
Please don't feel like you have to stick to my theme, though: if you've got something to say, I will find a way to make sure it's included. Since I don't tweet, and my FB is obviously off-limits because of anonymity, you can either leave a comment here with your e-mail or a link, or you can send it to my e-mail (link above). Looking forward to all the entries, and on being back here, in my space, saying what I need to say.
That discussion has had two clear impacts on my blogging - First, I've become more frightened than ever that some casual linkage, forgotten signout, or dropped conversational hint, will bring my anonymity here at NTE to a close. It's a terrifying thought for me, since I know that as myself, without the slim protection my pseudonym provides, I could never be this honest. Aside from the fact that I've opened up hidden parts of myself and shared a lot of things here that the people in my life would be quite surprised to know, I've also written more than one post in the heat of anger, said some things I would regret if they were read by the person they were written about, and what I've written would be sure to hurt some feelings.
Which brings us to the second impact - that fear of being found (which I know I must be, eventually, and here I am, coming up on 6 years blogging) is acting as a very real barrier to the honest writing I've accomplished and been proud of here. I find that I'm stumped, wanting (as always) to say what I want to say, knowing that it's my truth (even if it's only my truth in that moment, and changes immediately afterwards), but temporarily lacking the courage to accept the consequences that will come about when my anonymous bubble is burst.
The clearest example of this is the sister who already knows about my blog, and has (thankfully, sweetly, fabulously) kept it to herself for however many years she's been reading: I know there are times when I censor myself - what I'm going to talk about or not talk about, how I'm going to say it, whether I add the pros to a piece that started out more as ranting compilation of cons - because I know she's out there, among my proverbial audience. (Even though, in all honesty, I've seen her Google Readers - she has two! - and I'm pretty sure she's a zillion posts behind.... Hi SisterJ: How's January of 2013 treating us? Did we survive the Zombie-pocalypse? ;) )
Between this element of self-censorship - the fear of how others will feel about what I've said about them - and the fact that everything I want to talk about lately is all part of a big sticky, jumbled up mess that my brain just laughs at instead of trying to make sense of, I was pretty sure that I was going to be shutting down the blog - at least for a while, and maybe permanently.
It was not just that, though: It was everything - It was because every time I come I see that the footer banner is 2 years out of date, and I'm sick to death of the color scheme, and I don't have the energy to re-vamp the whole thing right now. It's that I've already said everything that could ever be said about the power of books and the suckiness of living with chronic illnesses, and I have maybe 7 readers, and aren't they sick of listening to me already?
It was a lot of bullshit, really. A lot of excuses I was letting myself get away with, because I was too scared to come here and say I was scared. That I'm stuck: again: Still. (seems like) Always. It's the reason that my last post was the easiest, and most honest thing I've written in months: because the reasons not write, not to post, not to share are always there, and wouldn't it be so much easier if I just gave up on talking to the world-at-large (on my very small scale) and just tucked it all back inside again?
Hells. No.
(But also: Absolutely.)
So I'm afraid: what of it? I'm nearly terrified of pretty much every single thing my adult life has thrown at me thus far - why should this be any different? Maybe the fact that it's getting scarier is a good thing? Because I'm doing things I ordinarily wouldn't do: Putting down truths that are hard to think, let alone write. Taking my time when I need it, even as I feel the rest of the world speeding forward without me. Letting shit go, if it doesn't matter, and not letting shit go, when it does. Being a fucking grown-up, when you come right down to it.
So that's my plan: keep plugging. Don't let the bastards get you down! Lots of cliches about overcoming obstacles!
And one way I'm going to be doing that is by setting very real, publicly posted goals: Not letting myself get away with all the excuses.
Which is one reason I'm excited to be hosting my very first every Disability Blog Carnival, should ya'll be interested in contributing/attending/watching from afar. It's going to be on September 27th, and - since I was always the kid in school who liked a little bit of a framework - I've decided to provide a non-compulsory theme to help out those who feel they want it: Being Seen. It's something I'm struggling to work out for myself, so I figured I'd ask how you all are handling it - How do you want to be seen? How are you seen? Do you feel invisible? What aren't people seeing that they need to see? Are you looking for a way to get noticed, or are you hoping that nobody will?
Please don't feel like you have to stick to my theme, though: if you've got something to say, I will find a way to make sure it's included. Since I don't tweet, and my FB is obviously off-limits because of anonymity, you can either leave a comment here with your e-mail or a link, or you can send it to my e-mail (link above). Looking forward to all the entries, and on being back here, in my space, saying what I need to say.
Monday, February 21, 2011
Thanks a lot, Oprah, for blowing my cover.
Maybe it's just me, but everywhere I turn on the interwebs lately, people are talking about Internet anonymity and how it's truly a farce. How there's no such thing, and you should never write anything on your blog that you wouldn't want broadcast on the evening news. How easy it is for people to find out who you really are, and any attempts at anonymity are both fruitless and delusional.
Cue intense fear and current radio silence here at Never That Easy.
I mean, I know that what I write here is not secret, but, back when I first started, I thought it would be impossible for anybody I actually knew to track me down. This is not because I am any great whiz at the complexities of Internet anonymity, but more because I am stupid: I was using my own, very first ever and totally known by everyone in my life e-mail address, and - as I found out when one of my sisters did find me - this site was the Google search result of entering my e-mail address. Talk about naive. (Although, in my defense, I couldn't imagine that anyone in my family would actually be bored enough to put my e-mail address into a search engine, but it turns out that I had obviously underestimated the extent to which certain people would procrastinate at boring office jobs.)
I have since published pictures of just about everyone in my family and written posts with enough identifying information that there could be no mistake - if someone who knows me happens to wander past, then they will know it is me. Which made me start wondering if I should just stop trying to hide behind the three initials, and start using my own name.
It made me wonder that for about .3 seconds, anyways.
I admire people who write under their real names, or even pseudonyms but you know who they are in real life (Dooce = Heather, for example), but I am just not ready to be one of them. I had a horrible nightmare a while ago that Oprah used one of my Internet comments - a comment I am particularly proud of because I managed to say what I wanted to say and avoid the Internet trolls at the same time, which you might know is particularly difficult on some sites - in a show about the topic we were discussing (budget cuts and Planned Parenthood's cuts, specifically). And when she read the comment, behind her on that big screen, she showed a picture my site. And she mentions that I am a blogger with a chronic illness, and you can read more of what I said at the site name.
And of course, in the dream, I am watching it with my mom, who is not focusing 100% : like me she's a TV multi-tasker, so she's usually on the computer or crocheting while she mostly listens to what's going on. And I am breaking out into a cold sweat, and trying to not show that I am panicking and - here's something you all don't know about me, because we haven't met in person, but in person? I am a horrible liar.
Everyone in my family agrees (although I don't, because I can keep secrets, which is a form of lying, so there) that between my not being able to make eye contact & a dislike for lying on a whole, I am served particularly unwell when presented with the task. I mostly get a lot of "Why do you even bother trying to lie?"
So in the dream, trying to hide that I am going to throw up because there is my baby picture up on Oprah's show (and while many other people might not recognize my baby picture, which was good thinking six years ago when I was trying to pick a damn avatar), my mom certainly would, so I must keep her from looking up.
Thankfully, since I sleep like crap, I woke up then and got to obsess over the dream while wide awake and tossing and turning. And all I could think of was that instead of being proud that someone had liked what I had written well enough to quote it, and to say to other people, 'hey, check this out,' I was so worried about my family knowing about the site that I wanted to throw something at the TV just so she wouldn't see my picture.
I think that shows a certain reluctance to embrace the openness of using my own name, how about you?
I've definitely said some things here that would hurt them, and I don't have any interest in doing that. I've definitely said some things that they wouldn't understand or that I'd rather not have to defend to them. It's just more drama than it is worth, basically.
So I'm going to keep writing, and be proud of what I'm writing, but I'm also going to continue keeping it to myself, because, as much as I love them, I love this too. And I wouldn't write like this if knew that when I went into the kitchen, people would be discussing and dissecting it. I wouldn't write like this if I had to keep thinking about whose reaction I just didn't' want to deal with. And if/when anybody else finds me, I will deal with that, and hopefully convince them it's in all our best interests to keep our mouths shut.
Cue intense fear and current radio silence here at Never That Easy.
I mean, I know that what I write here is not secret, but, back when I first started, I thought it would be impossible for anybody I actually knew to track me down. This is not because I am any great whiz at the complexities of Internet anonymity, but more because I am stupid: I was using my own, very first ever and totally known by everyone in my life e-mail address, and - as I found out when one of my sisters did find me - this site was the Google search result of entering my e-mail address. Talk about naive. (Although, in my defense, I couldn't imagine that anyone in my family would actually be bored enough to put my e-mail address into a search engine, but it turns out that I had obviously underestimated the extent to which certain people would procrastinate at boring office jobs.)
I have since published pictures of just about everyone in my family and written posts with enough identifying information that there could be no mistake - if someone who knows me happens to wander past, then they will know it is me. Which made me start wondering if I should just stop trying to hide behind the three initials, and start using my own name.
It made me wonder that for about .3 seconds, anyways.
I admire people who write under their real names, or even pseudonyms but you know who they are in real life (Dooce = Heather, for example), but I am just not ready to be one of them. I had a horrible nightmare a while ago that Oprah used one of my Internet comments - a comment I am particularly proud of because I managed to say what I wanted to say and avoid the Internet trolls at the same time, which you might know is particularly difficult on some sites - in a show about the topic we were discussing (budget cuts and Planned Parenthood's cuts, specifically). And when she read the comment, behind her on that big screen, she showed a picture my site. And she mentions that I am a blogger with a chronic illness, and you can read more of what I said at the site name.
And of course, in the dream, I am watching it with my mom, who is not focusing 100% : like me she's a TV multi-tasker, so she's usually on the computer or crocheting while she mostly listens to what's going on. And I am breaking out into a cold sweat, and trying to not show that I am panicking and - here's something you all don't know about me, because we haven't met in person, but in person? I am a horrible liar.
Everyone in my family agrees (although I don't, because I can keep secrets, which is a form of lying, so there) that between my not being able to make eye contact & a dislike for lying on a whole, I am served particularly unwell when presented with the task. I mostly get a lot of "Why do you even bother trying to lie?"
So in the dream, trying to hide that I am going to throw up because there is my baby picture up on Oprah's show (and while many other people might not recognize my baby picture, which was good thinking six years ago when I was trying to pick a damn avatar), my mom certainly would, so I must keep her from looking up.
Thankfully, since I sleep like crap, I woke up then and got to obsess over the dream while wide awake and tossing and turning. And all I could think of was that instead of being proud that someone had liked what I had written well enough to quote it, and to say to other people, 'hey, check this out,' I was so worried about my family knowing about the site that I wanted to throw something at the TV just so she wouldn't see my picture.
I think that shows a certain reluctance to embrace the openness of using my own name, how about you?
I've definitely said some things here that would hurt them, and I don't have any interest in doing that. I've definitely said some things that they wouldn't understand or that I'd rather not have to defend to them. It's just more drama than it is worth, basically.
So I'm going to keep writing, and be proud of what I'm writing, but I'm also going to continue keeping it to myself, because, as much as I love them, I love this too. And I wouldn't write like this if knew that when I went into the kitchen, people would be discussing and dissecting it. I wouldn't write like this if I had to keep thinking about whose reaction I just didn't' want to deal with. And if/when anybody else finds me, I will deal with that, and hopefully convince them it's in all our best interests to keep our mouths shut.
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.
------------------------------------
Definitions for worth via Merriam Webster dictionary & Dictionary.com
Wednesday, December 30, 2009
I just saw this post by one of my favorite bloggers, and even though I have a very small blog audience, and because I know all of you have big hearts, I thought I'd share it with you.
Hi Brandy! I am a long-time mostly lurker, and I wish we were getting to know each other under better circumstances. Please know that I am not much of a prayer, but I definitely know how to keep people in my head and heart, and hope that it helps them. And now you and your totally awesome internet guy are on my list, so I've got my fingers crossed for you.
My name is brandy. And I have a blog.
And a plea.
I use my blog to showcase the crazy I meet everyday, share the stories of the kids I teach and document my love for tequila, dairy products and the abdominal muscles of Ryan Reynolds. Rarely do I talk about personal issues on my blog- as personal as the dude that I adore (who I actually met through my blog- single ladies, let that be a very good reason to blog, the possibility of meeting someone as wonderful as my man), but I need your help. And it involves my dude.
He's a guy who made math comics for my class, so they would love learning about addition. He's the kinda guy who sends my friends gift cards when they are having hard times, who remembers every story I ever told him, who was the first person I celebrated with when I got a teaching job. He's the guy who sent flowers to me at school- dozens of my favourite pink roses just because he loves me. He's a guy who has spent a year patiently explaining (and re-explaining) everything there is to know about football during the important games when silence is preferred. He's made me word puzzles and comics and stayed up late playing Scrabble with me (even though I beat him almost every time). He's listened to me cry about school and family and jobs. He is everything I never knew I needed and everything I always knew I wanted.
The holidays have hit us hard. He's recently been told he may have something called multiple myeloma- an incurable cancer, that gives a person an average of five years of continued life. Though this news has came as a shock, he continues to be exactly who has always been- spending his time worrying about me, rather than worrying about himself. He's the most selfless individual I know- (he stayed late on Christmas Eve to work, so his co-workers could leave early) and a post like this would never be something that he would promote or encourage but when I'm overwhelmed and feeling helpless, the blogging community has always given me tremendous support and comfort, two things I desperately need at this time.
As I write this, the future is uncertain and we aren't sure what's happening. He'll need to see an oncologist soon, to verify what's going on in his body. My hope is that everyone who reads this think positive thoughts and if you are a person who prays, could you add him to your list? (You can refer to him as 'brandy's hot awesome dude'). If you don't pray, please keep him in your heart. This cancer is only a possibility and I believe that the prayers and positive thoughts of people can make sure it never becomes a reality.
I want to give a big thank you to the blog owner who scraped their original blog plans and graciously put this up. My goal is to get as many people as possible to see and read this post. If you are reading this and want to help, copy and paste my plea into your blog or send a link through twitter, so more people can keep him in their thoughts. I would be so very grateful (even more grateful than I am to my friend who first showed me the picture of Ryan Reynolds on the cover of Entertainment Weekly. If you haven't seen it, google it. You. Are. Welcome).
I realize this all sounds dramatic, a Lifetime movie in the making- but this is life. Right now. And I'm throwing away any hint of ego and am humbly asking for you to pray or think kind thoughts. If you are able to pass this on, thank you and if you know anything regarding MM- please email me (my email is on my blog). This isn't a call for sympathy or a plea for pity. It's just one girl hoping you can think positive thoughts for the person she adores. If my current heartache provides you with anything, let it be with the reminder that life is short, love is unbending and no one knows what could happen next. Maybe it is silly, but I really do believe that positive thoughts can make a huge difference. Thank you for reading this and if you haven't already? Please tell someone you love them today.
I did.
Hi Brandy! I am a long-time mostly lurker, and I wish we were getting to know each other under better circumstances. Please know that I am not much of a prayer, but I definitely know how to keep people in my head and heart, and hope that it helps them. And now you and your totally awesome internet guy are on my list, so I've got my fingers crossed for you.
My name is brandy. And I have a blog.
And a plea.
I use my blog to showcase the crazy I meet everyday, share the stories of the kids I teach and document my love for tequila, dairy products and the abdominal muscles of Ryan Reynolds. Rarely do I talk about personal issues on my blog- as personal as the dude that I adore (who I actually met through my blog- single ladies, let that be a very good reason to blog, the possibility of meeting someone as wonderful as my man), but I need your help. And it involves my dude.
He's a guy who made math comics for my class, so they would love learning about addition. He's the kinda guy who sends my friends gift cards when they are having hard times, who remembers every story I ever told him, who was the first person I celebrated with when I got a teaching job. He's the guy who sent flowers to me at school- dozens of my favourite pink roses just because he loves me. He's a guy who has spent a year patiently explaining (and re-explaining) everything there is to know about football during the important games when silence is preferred. He's made me word puzzles and comics and stayed up late playing Scrabble with me (even though I beat him almost every time). He's listened to me cry about school and family and jobs. He is everything I never knew I needed and everything I always knew I wanted.
The holidays have hit us hard. He's recently been told he may have something called multiple myeloma- an incurable cancer, that gives a person an average of five years of continued life. Though this news has came as a shock, he continues to be exactly who has always been- spending his time worrying about me, rather than worrying about himself. He's the most selfless individual I know- (he stayed late on Christmas Eve to work, so his co-workers could leave early) and a post like this would never be something that he would promote or encourage but when I'm overwhelmed and feeling helpless, the blogging community has always given me tremendous support and comfort, two things I desperately need at this time.
As I write this, the future is uncertain and we aren't sure what's happening. He'll need to see an oncologist soon, to verify what's going on in his body. My hope is that everyone who reads this think positive thoughts and if you are a person who prays, could you add him to your list? (You can refer to him as 'brandy's hot awesome dude'). If you don't pray, please keep him in your heart. This cancer is only a possibility and I believe that the prayers and positive thoughts of people can make sure it never becomes a reality.
I want to give a big thank you to the blog owner who scraped their original blog plans and graciously put this up. My goal is to get as many people as possible to see and read this post. If you are reading this and want to help, copy and paste my plea into your blog or send a link through twitter, so more people can keep him in their thoughts. I would be so very grateful (even more grateful than I am to my friend who first showed me the picture of Ryan Reynolds on the cover of Entertainment Weekly. If you haven't seen it, google it. You. Are. Welcome).
I realize this all sounds dramatic, a Lifetime movie in the making- but this is life. Right now. And I'm throwing away any hint of ego and am humbly asking for you to pray or think kind thoughts. If you are able to pass this on, thank you and if you know anything regarding MM- please email me (my email is on my blog). This isn't a call for sympathy or a plea for pity. It's just one girl hoping you can think positive thoughts for the person she adores. If my current heartache provides you with anything, let it be with the reminder that life is short, love is unbending and no one knows what could happen next. Maybe it is silly, but I really do believe that positive thoughts can make a huge difference. Thank you for reading this and if you haven't already? Please tell someone you love them today.
I did.
Wednesday, September 23, 2009
4 years in, and Blogger's spell check still doesn't recognize 'blogger' as a word...
This week marks my fourth anniversary here at Never That Easy, and it has me doing a bit of reflecting.
A lot has happened in these four years, in my life & in the world, and I have been immensely fortunate to have this space to come and talk about it all. I may not be the most popular blogger, but I do have commenters who care and who take the time to read my often long and rambling thoughts and then let me know what they think about what I've said. You guys have been amazing: so much more than I expected when I first signed up for this blogger account and racked my brain trying to come up with an anonymous name for my space.
Over the course of the 4 years here, I've tried some things that didn't work for me, I've gone weeks without posting - and posted every day for months. I've learned the basics of html, figured out how to make a generic template my own, and considered adding ads (and realized that they wouldn't make me a profit). I've written things I felt guilty about posting, and not written things I felt guilty about not posting. On one memorable occasion, I was made to feel like much less than I actually am, and on occasions too numerous to count, I am made to feel like I am so much more than I am.
Because I am a blogger, I am a part of a diverse, often inspiring, and sometimes overwhelming community - it's a community with flaws, just like any other, but the support I've found here, the welcoming and understanding, far outweigh any flaws I've encountered. It's something that is hard to explain to people who don't read blogs - it's sometimes hard to explain to myself.
All I know is I have found connections here, and that those connections came at a critical time for me.
Living with chronic illnesses can be a very selfish thing, by necessity - and not even always in a negative way. Self care is vitally important, especially for those of us living with chronic challenges. But if you spend all your time monitoring how you are feeling and what is impacting that and which pills are helping or which doctor you have to call again for the 1000th time, it's so easy to spiral into a place where the energy required to make it through your daily life means you wind up focusing, almost exclusively on your life. (At least for me, it does.) And that's not the way I want to live.
Blogging has also made me much more aware of how much other people are going through: it's not as if I didn't know that life is hard for everyone before I started reading blogs, it's that I didn't always feel it. It's a lot harder to stay self-centered when you're reading about other people's lives, when you feel compelled to comment on particularly poignant posts, when you've just spent 10 minutes crying over someone else's loss.
I've always connected to writing - books have been my salvation more often than I can count - but connecting through the fabulous writing of bloggers means connecting
to the lives of real people. And having them connect with you.
I don't know where I'd be if I hadn't found people who understood - or who at least made the effort to understand. I didn't know there were so many people out there who had similar issues, who could get it, or people who have no idea what it's like to live my life, but who would listen to what I was saying and actually care. It still seems impossible to me that you all show up here whenever your Google Reader kindly informs you that I have said something else.
A lot of what I say is nonsense - memes and quizzes, random flotsam and jetsam from the wreckage of my brain - but a lot of it is also meaningful.
It's stuff that's hard to think, let alone write.
It's stuff that's personal and private and I that I never figured on sharing with anyone (let alone a bunch of people I've never met.)
It's stuff I'll always want to remember, and stuff I'd rather forget.
I don't have any promises for you about what comes next - I know there are some things I'd like to try this year, some stuff I'd like to feature in this space - but all I really know for sure is that I'll be back. Even when it seems like I just am not ever going to get around to writing half the posts that are littering up my head, I know I have to say something. So, thanks for being here when I do!
A lot has happened in these four years, in my life & in the world, and I have been immensely fortunate to have this space to come and talk about it all. I may not be the most popular blogger, but I do have commenters who care and who take the time to read my often long and rambling thoughts and then let me know what they think about what I've said. You guys have been amazing: so much more than I expected when I first signed up for this blogger account and racked my brain trying to come up with an anonymous name for my space.
Over the course of the 4 years here, I've tried some things that didn't work for me, I've gone weeks without posting - and posted every day for months. I've learned the basics of html, figured out how to make a generic template my own, and considered adding ads (and realized that they wouldn't make me a profit). I've written things I felt guilty about posting, and not written things I felt guilty about not posting. On one memorable occasion, I was made to feel like much less than I actually am, and on occasions too numerous to count, I am made to feel like I am so much more than I am.
Because I am a blogger, I am a part of a diverse, often inspiring, and sometimes overwhelming community - it's a community with flaws, just like any other, but the support I've found here, the welcoming and understanding, far outweigh any flaws I've encountered. It's something that is hard to explain to people who don't read blogs - it's sometimes hard to explain to myself.
All I know is I have found connections here, and that those connections came at a critical time for me.
Living with chronic illnesses can be a very selfish thing, by necessity - and not even always in a negative way. Self care is vitally important, especially for those of us living with chronic challenges. But if you spend all your time monitoring how you are feeling and what is impacting that and which pills are helping or which doctor you have to call again for the 1000th time, it's so easy to spiral into a place where the energy required to make it through your daily life means you wind up focusing, almost exclusively on your life. (At least for me, it does.) And that's not the way I want to live.
Blogging has also made me much more aware of how much other people are going through: it's not as if I didn't know that life is hard for everyone before I started reading blogs, it's that I didn't always feel it. It's a lot harder to stay self-centered when you're reading about other people's lives, when you feel compelled to comment on particularly poignant posts, when you've just spent 10 minutes crying over someone else's loss.
I've always connected to writing - books have been my salvation more often than I can count - but connecting through the fabulous writing of bloggers means connecting
to the lives of real people. And having them connect with you.
I don't know where I'd be if I hadn't found people who understood - or who at least made the effort to understand. I didn't know there were so many people out there who had similar issues, who could get it, or people who have no idea what it's like to live my life, but who would listen to what I was saying and actually care. It still seems impossible to me that you all show up here whenever your Google Reader kindly informs you that I have said something else.
A lot of what I say is nonsense - memes and quizzes, random flotsam and jetsam from the wreckage of my brain - but a lot of it is also meaningful.
It's stuff that's hard to think, let alone write.
It's stuff that's personal and private and I that I never figured on sharing with anyone (let alone a bunch of people I've never met.)
It's stuff I'll always want to remember, and stuff I'd rather forget.
I don't have any promises for you about what comes next - I know there are some things I'd like to try this year, some stuff I'd like to feature in this space - but all I really know for sure is that I'll be back. Even when it seems like I just am not ever going to get around to writing half the posts that are littering up my head, I know I have to say something. So, thanks for being here when I do!
Friday, May 01, 2009
Results of my BADD wanderings
part 1. It usually takes me a few days to get all the way through these posts. And it has been a truly horrid week, so I'm slow going anyways. But they're so awesome, and I could really use the distraction, so you never know: I might finish them all right now.
Here are a few highlights so far -
and lastly (for now),Rachelcreative's line
Here are a few highlights so far -
...the experiences of the privileged are considered the norm everyone should be expected to live up to. Just as women are expected to simply adapt to institutions and social structures that evolved out of male privilege, those with ADHD are expected to be able to succeed in education and careers designed by and for people with "normal" abilities and ways of thinking. Those who don't are called lazy and irresponsible, or are blamed for not pulling their weight at work.from The Acrimonious One
Many will argue that if they do not know about the issues, they can’t be guilty of being ‘disablist’. But that misses the point of a truly inclusive society - one which not only breaks down barriers, but doesn’t even create them in the first place. A perfect scenario would be where it is harder to exclude than to include. Perhaps this is an unrealistic hope, but it is nevertheless a noble aim and should be the target of our efforts.from A Pretty Simple Blog
o those who are too ill to work outside the home for a paycheck are unproductive by definition, regardless of how much they get done. Furthermore, the self-care that is so essential to managing chronic conditions is valued even less than the ongoing care of others*. Our most vital work is society's least esteemed.by SKM over at Shakesville
Pain, as I explain to people, is not a feeling. It is where I live, and while I can't make out my neighbours through the fog, I know I don't live here alone.A beautiful, heartbreakingly true line from Whirlwitch (Although, LJ users: how about having a visible e-mail address or enabling those anonymous comments - even if just for days when you're getting linked to from something like BADD? I don't much like having to delete anonymous comments either, but I hate not being able to tell someone I've loved what they've written.)
and lastly (for now),Rachelcreative's line
I don’t expect you to be a mind reader but when I tell you I have a problem with something you have to trust me that I know what I’m talking about.really hit home with me as well. (SisterCh, even though you don't read this: I am talking to you.)
BADD Girl
For my BADD post, I'm updating/editing a previous post about chronic illness and friendship, just in case you're a regular reader and this sounds kind of familiar. Happy Blogging Against Disabilism Day, everybody. Please head over to the Fishy's place, and read the awesome entries.
One of the greatest challenges of living with a chronic illness is the sense of isolation it can bring. It can be devastating to suddenly (or not so suddenly, depending on the situation)find yourself in a place where nobody else seems to understand, where you have nothing in common with those around you, where you are left facing an illness - and all of its many challenges - on your own. I was 15 when my illness changed my life forever, and almost immediately, I began to feel disconnected from my friends and peers - but by experience rather than time or distance.
In high school I was different because I didn't date or go to parties. I never drank or smoked pot (the norm at my high school, anyways), I couldn't drive, & I didn't skip classes to get pizza because I knew I'd need the sick days for actual sickness. I missed the prime gossip hours - lunch, study hall, walking home from school - because I only showed up to go to classes, and then went home and crashed, or I was homeschooled (when things were really bad). I had to stop dancing, and those 'friends' disappeared from my life immediately - I can remember showing up to the next year's recital - the recitals I had previously felt like I owned, the recital where I was supposed to finally have earned the right to a solo - and feeling like an intruder, feeling worthless & forgotten. I had no enemies, and managed to maintain one or two close friends, but we still had spaces between us - inside jokes I didn't understand anymore, trips I couldn't take, heartbreaks I couldn't nurse them through with cookie dough and sleepovers.
During college, things were much better - living on campus brought me independence, brought me a community of girls who bonded with me over papers and boredom, the frenzy of finals and the loathing of lesson plans. I loved them, and they loved me, and they somehow - amazingly, to me, it seemed - managed to understand who I was and that I wasn't just this weird combination of illnesses.
But there were still things that branded me as an outsider - I went home on the weekends because the sensory overload in the dorms was too much for me. I didn't have boyfriends who broke my heart or hangovers that lasted two days. My wheelchair accessible dorm was fine, but the student center, the theater where the plays were held, the alumni center were committees were formed, the neighborhood restaurants were all off limits to me. When my friends would plan their birthday parties, they'd always include a stop by my room: we'd take pictures, I'd give them my gift, they'd preen, I'd send them off for a night on the town. These pictures are bittersweet to me now - having friends who cared enough to come by at all is sometimes overshadowed by the fact that they were on their way to a night full of fun and I was on my way to bed. (4 years of college and maybe 17 pictures, all following the same pattern - the group of us sitting on my bed in my dorm room, them dressed to the nines and me in my pajamas.)
After we graduated, the gap began to widen again: my friends started getting married almost immediately, a few of them had kids right away, and they all had jobs. They all got careers and husbands, eventually homes and kids. I wound up with doctor's appointments, random rare diseases, a datebook filled with medical tests; fabulous kids that I play auntie to, but who go home at the end of the day, and the same twin bed I've had since I was 16.
(I know that there's more to my life than that last sentence, I'm just trying to make a point about the gap I've been feeling lately.)
"What are you doing now?"
"Where do you work?"
"Are you seeing anyone?"
These are all routine questions, to which I have very un-routine answers (at least for my age group). Most almost 30 year-olds work. Most almost 30 year-olds date or are in serious relationships. A lot of them have kids, mortgages, cars to buy, bills to pay.
I do have a lot: this isn't about that. I know I have a lot to be grateful for, a lot of happiness inducing, valuable people in my life, a lot of interesting & intriguing ways I spend my time... this post isn't about me feeling sorry for myself (or, at least it's not meant to be), it's about how hard it is to be connected, to stay connected to people you care about when you have so little in common.
It's about how strange it feels to have no 'real' answer to everyday questions - when you're friended on Facebook by an old acquaintance who asks how you are and what you're doing now.... why it's so difficult not to just skirt the truth, to not want to just make up some better, more acceptable answer. It may be by necessity that I'm not working, it may even be a blessing that I am able to devote so much of my life to being with the people I love, but that doesn't make it easier to say that I don't have a job because I'm too ill to work right now.
It's about how left behind you begin to feel when all of your friends are doing adult things - hell, when your little sisters are doing adult things - and you still feel like you're living the same life you were living 12 years ago. I did go to college - it was an unbelievably intense challenge that I am so proud of myself for conquering - but I got so sick afterwards that I couldn't put it to use, and now, 8 years later, I'm still here, still stuck.
So it's hard to be the one to pick up the phone and call one of the girls from college and say "Hey, come and visit me: let me just let my parents know first."
The Internet - particularly the blogosphere - has been really helpful for me with all of this, helping me to find new peers, to connect with other people like me. Peer groups need not be just by age, after all - having friends of all ages who can understand your experiences can be vital too: I've bonded with readers, with photographers, with aunties, with other young adults with chronic illness. Having people who have faced some of the same challenges in connecting with the 'real' world, who feel the same sort of disconnect has been really important for me and has, at times, kept me from becoming completely isolated from non-family people. It's one of the things I like best about the blogosphere - there seems to be no end of blogs written by outsiders, by the non-cool kids, by the uncliqued masses (Sure, there's some clique-y-ness every now and then, but by and large.) I have made real, true friends online, and I never expected the blessing of that.
It's just that lately, I've been feeling this disconnect between me and my IRL friends pretty keenly: there's been a rash of pregnancies - and second pregnancies when I've never met the first baby in person; my oldest friend (I'm talking 2nd grade here people) is getting married in October and I've yet to meet her fiance, even though they've been dating for 3 years; I'm finding out secondhand & after the fact that there are parties, shindigs,& get togethers that I would usually be invited to (and have to decline) that I never knew about (and I honestly don't know which is worse: the having to decline or the not getting the opportunity to)... It just feels like I haven't put enough effort into these relationships, and they are crumbling around me.
Think about your own life - think about the best friend you lost touch with after high school ended, the acquaintance you used to send a Christmas card to until you just forgot one year, the woman from your kid's little league games that you talked to 3 days a week for 3 summers in a row and now never see - and about how easy it is to lose those ties. Now think about how much easier it would be to lose the connection if one of your friends hardly ever left her house - how quickly you might get sick of inviting her places if she always says no, how awkward you might start to feel about letting her know the good things that were going on in your life if you think she's got very few positive things in hers, how rapidly life runs away with you so that you never have a moment to sit down and put the fact that you're thinking about her into action.
I've been really good at keeping up virtually - I always send birthday cards (almost always on time); I comment on their kids' pictures & send presents signed 'honorary auntie NTE'; I pledge money when they run marathons and donate to the 'in lieu of flower' organization of their family's choice if someone they love passes away. But I can count on one hand the number of times I've actually been in the same room with most of them (excepting Best Friend/College Roommate) in the past 8 years.
So I've been thinking about how to do better at this, and I think the key is not to wait. Not to wait until I feel 'better' enough, not to wait until I feel like I've got more interesting things going on. I'm so horrible at this (we've talked about how I hate the phone. And how I am actually shy in real life and get embarrassed really easily and on and on and on) but I'm going to try not to let myself make excuses. I'm going to write an e-mail this week to at least one friend and see if she can't carve out some time for me. And then I'll carve out some time for her.
Because I do need those people in my life that I can call when I'm sad and need cheering up, that I would answer the phone for even in the middle of an un-Tivoed, brand new episode of The Office, that I get to see the engagement rings of and rub the pregnant bellies of. Because I think I am a good friend, and that's not something I'm willing to put on hold any longer.
I spend way too much time thinking about the past. I remember the me that used to be, the me that told people everything, that had a wide circle of friends I could call, in tears, whenever I needed to, and I wonder when I closed myself off, I wonder if this is just part of growing up, growing old, or if there’s really something wrong with me now and I wonder what I’d have to do to let other people in again.
From Princess Nebraska
One of the greatest challenges of living with a chronic illness is the sense of isolation it can bring. It can be devastating to suddenly (or not so suddenly, depending on the situation)find yourself in a place where nobody else seems to understand, where you have nothing in common with those around you, where you are left facing an illness - and all of its many challenges - on your own. I was 15 when my illness changed my life forever, and almost immediately, I began to feel disconnected from my friends and peers - but by experience rather than time or distance.
In high school I was different because I didn't date or go to parties. I never drank or smoked pot (the norm at my high school, anyways), I couldn't drive, & I didn't skip classes to get pizza because I knew I'd need the sick days for actual sickness. I missed the prime gossip hours - lunch, study hall, walking home from school - because I only showed up to go to classes, and then went home and crashed, or I was homeschooled (when things were really bad). I had to stop dancing, and those 'friends' disappeared from my life immediately - I can remember showing up to the next year's recital - the recitals I had previously felt like I owned, the recital where I was supposed to finally have earned the right to a solo - and feeling like an intruder, feeling worthless & forgotten. I had no enemies, and managed to maintain one or two close friends, but we still had spaces between us - inside jokes I didn't understand anymore, trips I couldn't take, heartbreaks I couldn't nurse them through with cookie dough and sleepovers.
During college, things were much better - living on campus brought me independence, brought me a community of girls who bonded with me over papers and boredom, the frenzy of finals and the loathing of lesson plans. I loved them, and they loved me, and they somehow - amazingly, to me, it seemed - managed to understand who I was and that I wasn't just this weird combination of illnesses.
But there were still things that branded me as an outsider - I went home on the weekends because the sensory overload in the dorms was too much for me. I didn't have boyfriends who broke my heart or hangovers that lasted two days. My wheelchair accessible dorm was fine, but the student center, the theater where the plays were held, the alumni center were committees were formed, the neighborhood restaurants were all off limits to me. When my friends would plan their birthday parties, they'd always include a stop by my room: we'd take pictures, I'd give them my gift, they'd preen, I'd send them off for a night on the town. These pictures are bittersweet to me now - having friends who cared enough to come by at all is sometimes overshadowed by the fact that they were on their way to a night full of fun and I was on my way to bed. (4 years of college and maybe 17 pictures, all following the same pattern - the group of us sitting on my bed in my dorm room, them dressed to the nines and me in my pajamas.)
After we graduated, the gap began to widen again: my friends started getting married almost immediately, a few of them had kids right away, and they all had jobs. They all got careers and husbands, eventually homes and kids. I wound up with doctor's appointments, random rare diseases, a datebook filled with medical tests; fabulous kids that I play auntie to, but who go home at the end of the day, and the same twin bed I've had since I was 16.
(I know that there's more to my life than that last sentence, I'm just trying to make a point about the gap I've been feeling lately.)
"What are you doing now?"
"Where do you work?"
"Are you seeing anyone?"
These are all routine questions, to which I have very un-routine answers (at least for my age group). Most almost 30 year-olds work. Most almost 30 year-olds date or are in serious relationships. A lot of them have kids, mortgages, cars to buy, bills to pay.
I do have a lot: this isn't about that. I know I have a lot to be grateful for, a lot of happiness inducing, valuable people in my life, a lot of interesting & intriguing ways I spend my time... this post isn't about me feeling sorry for myself (or, at least it's not meant to be), it's about how hard it is to be connected, to stay connected to people you care about when you have so little in common.
It's about how strange it feels to have no 'real' answer to everyday questions - when you're friended on Facebook by an old acquaintance who asks how you are and what you're doing now.... why it's so difficult not to just skirt the truth, to not want to just make up some better, more acceptable answer. It may be by necessity that I'm not working, it may even be a blessing that I am able to devote so much of my life to being with the people I love, but that doesn't make it easier to say that I don't have a job because I'm too ill to work right now.
It's about how left behind you begin to feel when all of your friends are doing adult things - hell, when your little sisters are doing adult things - and you still feel like you're living the same life you were living 12 years ago. I did go to college - it was an unbelievably intense challenge that I am so proud of myself for conquering - but I got so sick afterwards that I couldn't put it to use, and now, 8 years later, I'm still here, still stuck.
So it's hard to be the one to pick up the phone and call one of the girls from college and say "Hey, come and visit me: let me just let my parents know first."
The Internet - particularly the blogosphere - has been really helpful for me with all of this, helping me to find new peers, to connect with other people like me. Peer groups need not be just by age, after all - having friends of all ages who can understand your experiences can be vital too: I've bonded with readers, with photographers, with aunties, with other young adults with chronic illness. Having people who have faced some of the same challenges in connecting with the 'real' world, who feel the same sort of disconnect has been really important for me and has, at times, kept me from becoming completely isolated from non-family people. It's one of the things I like best about the blogosphere - there seems to be no end of blogs written by outsiders, by the non-cool kids, by the uncliqued masses (Sure, there's some clique-y-ness every now and then, but by and large.) I have made real, true friends online, and I never expected the blessing of that.
It's just that lately, I've been feeling this disconnect between me and my IRL friends pretty keenly: there's been a rash of pregnancies - and second pregnancies when I've never met the first baby in person; my oldest friend (I'm talking 2nd grade here people) is getting married in October and I've yet to meet her fiance, even though they've been dating for 3 years; I'm finding out secondhand & after the fact that there are parties, shindigs,& get togethers that I would usually be invited to (and have to decline) that I never knew about (and I honestly don't know which is worse: the having to decline or the not getting the opportunity to)... It just feels like I haven't put enough effort into these relationships, and they are crumbling around me.
Think about your own life - think about the best friend you lost touch with after high school ended, the acquaintance you used to send a Christmas card to until you just forgot one year, the woman from your kid's little league games that you talked to 3 days a week for 3 summers in a row and now never see - and about how easy it is to lose those ties. Now think about how much easier it would be to lose the connection if one of your friends hardly ever left her house - how quickly you might get sick of inviting her places if she always says no, how awkward you might start to feel about letting her know the good things that were going on in your life if you think she's got very few positive things in hers, how rapidly life runs away with you so that you never have a moment to sit down and put the fact that you're thinking about her into action.
I've been really good at keeping up virtually - I always send birthday cards (almost always on time); I comment on their kids' pictures & send presents signed 'honorary auntie NTE'; I pledge money when they run marathons and donate to the 'in lieu of flower' organization of their family's choice if someone they love passes away. But I can count on one hand the number of times I've actually been in the same room with most of them (excepting Best Friend/College Roommate) in the past 8 years.
So I've been thinking about how to do better at this, and I think the key is not to wait. Not to wait until I feel 'better' enough, not to wait until I feel like I've got more interesting things going on. I'm so horrible at this (we've talked about how I hate the phone. And how I am actually shy in real life and get embarrassed really easily and on and on and on) but I'm going to try not to let myself make excuses. I'm going to write an e-mail this week to at least one friend and see if she can't carve out some time for me. And then I'll carve out some time for her.
Because I do need those people in my life that I can call when I'm sad and need cheering up, that I would answer the phone for even in the middle of an un-Tivoed, brand new episode of The Office, that I get to see the engagement rings of and rub the pregnant bellies of. Because I think I am a good friend, and that's not something I'm willing to put on hold any longer.
Tuesday, March 03, 2009
Words of Wisdom
I spend way too much time thinking about the past. I remember the me that used to be, the me that told people everything, that had a wide circle of friends I could call, in tears, whenever I needed to, and I wonder when I closed myself off, I wonder if this is just part of growing up, growing old, or if there’s really something wrong with me now and I wonder what I’d have to do to let other people in again.
From Princess Nebraska
One of the greatest challenges of living with a chronic illness is the sense of isolation it can bring. It can be devastating to suddenly (or not so suddenly, depending on the situation)find yourself in a place where nobody else seems to understand, where you have nothing in common with those around you, where you are left facing an illness - and all of its many challenges - on your own. I was 15 when my illness changed my life forever, and almost immediately, I began to feel disconnected from my friends and peers - but by experience rather than time or distance.
In high school I was different because I didn't date or go to parties. I never drank or smoked pot (big deals at my high school, anyways), I couldn't drive, & I didn't skip classes because I knew I'd need the sick days for actual sickness. I missed the prime gossip hours - lunch, study hall, walking home from school - because I only showed up to go to classes, and then went home and crashed, or I was homeschooled (when things were really bad). I had to stop dancing, and those 'friends' disappeared from my life immediately - I can remember showing up to the next year's recital - the recitals I had previously felt like I owned, the recital where I was supposed to finally have earned the right to a solo - and feeling like an intruder, feeling worthless & forgotten. I had no enemies, and managed to maintain one or two close friends, but we still had spaces between us - inside jokes I didn't understand anymore, trips I couldn't take, heartbreaks I couldn't nurse them through with cookie dough and sleepovers.
During college, things were much better - living on campus brought me independence, brought me a community of girls who bonded with me over papers and boredom, the frenzy of finals and the loathing of lesson plans. I loved them, and they loved me, and they somehow - amazingly, to me, it seemed - managed to understand who I was and that I wasn't just this weird combination of illnesses. But there were still things that branded me as an outsider - I went home on the weekends because the sensory overload in the dorms was too much for me. I didn't have boyfriends who broke my heart or hangovers that lasted two days. My wheelchair accessible dorm was fine, but the student center, the theater were the plays were held, the alumni center were committees were formed were all off limits to me. When my friends would plan their birthday parties, they'd always include a stop by my room: we'd take pictures, I'd give them my gift, they'd preen, I'd send them off for a night on the town. These pictures are bittersweet to me now - having friends who cared enough to come by at all is sometimes overshadowed by the fact that they were on their way to a night full of fun and I was on my way to bed. (4 years of college and maybe 17 pictures, all following the same pattern - the group of us sitting on my bed in my dorm room, them dressed to the nines and me in my pjs.)
After we graduated, the gap began to widen again: my friends started getting married almost immediately, a few of them had kids right away, and they all had jobs. They all got jobs and husbands, eventually homes and kids. I wound up with doctor's appointments, random rare diseases, a datebook filled with medical tests; fabulous kids that I play auntie to, but who go home at the end of the day, and the same twin bed I've had since I was 16.
(I know that there's more to my life than that last sentence, I'm just trying to make a point about the gap I've been feeling lately.)
"What are you doing now?" "Where do you work?" "Are you seeing anyone?" These are all routine questions, to which I have very un-routine answers (at least for my age group). Most almost 30 year-olds work. Most almost 30 year-olds date or are in serious relationships. A lot of them have kids, mortgages, cars to buy, bills to pay. I do have a lot: this isn't about that. I know I have a lot to be grateful for, a lot of happiness inducing, valuable people in my life, a lot of interesting & intriguing ways I spend my time... this post isn't about me feeling sorry for myself (or, at least it's not meant to be), it's about how hard it is to be connected, to stay connected to people you care about when you have so little in common.
It's about how strange it feels to have no 'real' answer to everyday questions - when you're friended on Facebook by an old acquaintance who asks how you are and what you're doing now.... why it's so difficult not to just skirt the truth, to not want to just make up some better, more acceptable answer. It may be a necessity that I'm not working, it may even be a blessing that I am able to devote so much of my life to being with the people I love, but that doesn't make it easier to say that I don't have a job because I'm too ill to work right now.
It's about how left behind you begin to feel when all of your friends are doing adult things - hell, when you're little sisters are doing adult things - and you still feel like you're living the same life you were living 12 years ago. I did go to college - it was a challenge I am so proud of myself for conquering - but I got so sick afterwards that I couldn't put it to use, and now, 8 years later, I'm still here, still stuck. So it's hard to be the one to pick up the phone and call one of the girls from college and say "Hey, come and visit me: let me just let my parents know first."
The Internet - particularly the blogosphere - has been really helpful for me with all of this, helping me to find new peers, to connect to other people like me. Peer groups need not be just by age, after all - having friends of all ages who can understand your experiences can be vital too: I've bonded with readers, with photographers, with aunties, with other young adults with chronic illness. Having people who have faced some of the same challenges in connecting with the 'real' world, who feel the same sort of disconnect has been really important for me and has, at times, kept me from becoming completely isolated from non-family people. It's one of the things I like best about the blogosphere - there seems to be no end of blogs written by outsiders, by the non-cool kids, by the uncliqued masses (Sure, there's some clique-y-ness every now and then, but by and large.) I have made real, true friends online, and I never expected the blessing of that.
It's just that lately, I've been feeling this disconnect between me and my IRL friends pretty keenly: there's been a rash of pregnancies - and second pregnancies when I've never met the first baby in person; my oldest friend (I'm talking 2nd grade here people) is getting married in October and I've yet to meet her fiance, even though they've been dating for 3 years; I'm finding out secondhand & after the fact that there are parties, shindigs,& get togethers that I would usually be invited to (and have to decline) that I never knew about (and I honestly don't know which is worse: the having to decline or the not getting the opportunity to)... It just feels like I haven't put enough effort into these relationships, and they are crumbling around me.
Think about your own life - think about the best friend you lost touch with after high school ended, the acquaintance you used to send a Christmas card to until you just forgot one year, the woman from your kid's little league games that you talked to 3 days a week and now never see - and about how easy it is to lose those ties. Now think about how much easier it would be to lose the connection if one of your friends hardly ever left her house - how quickly you might get sick of inviting her places if she always says no, how awkward you might start to feel about letting her know the good things that were going on in your life if you think she's got very few positive things in hers, how rapidly life runs away with you so that you never have a moment to sit down and put the fact that you're thinking about her into action.
I've been really good at keeping up virtually - I always send birthday cards (almost always on time); I comment on their kids' pictures & send presents signed 'honorary auntie NTE'; I pledge money when they run marathons and donate to the 'in lieu of flower' organization of their family's choice if someone they love passes away. But I can count on one hand the number of times I've actually been in the same room with most of them (excepting Best Friend/College Roommate) in the past 8 years.
So I've been thinking about how to do better at this, and I think the key is not to wait. Not to wait until I feel 'better' enough, not to wait until I feel like I've got more interesting things going on. I'm so horrible at this (we've talked about how I hate the phone. And how I am actually shy in real life and get embarrassed really easily and on and on and on) but I'm going to try not to let myself make excuses. I'm going to write an e-mail this week to at least one friend and see if she can't carve out some time for me. And then I'll carve out some time for her.
Because I do need those people in my life that I can call when I'm sad and need cheering up, that I would answer the phone for even in the middle of an un-Tivoed, brand new episode of The Office, that I get to see the engagement rings of and rub the pregnant bellies of. Because I think I am a good friend, and that's not something I'm willing to put on hold any longer.
Sunday, March 01, 2009
Anonymous? Not quite
Writing this blog, I try to get my feelings down, my thoughts out; Try to write my perspective on things that happen in my life, in our lives, in the world. And as I do so, I try to always remember that I'm writing about real people, and that they all have real feelings too. I try to take that into account with whatever I am writing, but sometimes, I know, I am pissed off, or hurt, or flabbergasted at the stupidity that seems to be running through my bloodline. It happens. I wouldn't want the people I write about in those kind of posts to wander onto my blog, because they'd be hurt, maybe, by some of my perceptions of them, and that's not the goal here. If I'm letting off steam, I figure, it's a good thing, because then I don't get into trouble by telling my brother he's being an ass, or wishing one of my sisters would just wise the hell up.
Well, one of my sisters has wised the hell up, and found my blog.
She actually found it quite a while back, and the first time she left me a comment I nearly threw up. I mean, I was trying to remember anything I'd ever written about her here, hoping I hadn't been to harsh in any of my posts about her, or our family, or spilled any secrets that I didn't want broadcasted. (To people who I might have to face over the dinner table, basically.) But I'm pretty good about that anyways, and the sister who found me out is - luckily - a sister who's capable of keeping a secret, a sister who I don't fear would use what she reads here against me....
Not that I'm all giving away ammunition and stuff, but still: some people in my family, if - god forbid - they should ever track me down here, I would never feel safe saying anything, I would always have to watch my words. And that's not what this place is for, so screw that. The only censoring I want to be doing is common sense censoring - you know, in case I get the urge to publish my social security number or something.
But she did tell me that anytime I wanted her to skip a post, I should just let her know: Personally, I think if someone told me "Don't read this!!" I would then feel compelled to READ IT IMMEDIATELY, but we shall see. We need some sort of bat signal or something that I can give you a visual clue that this post is not for you. Maybe I'll make a badge or something...
ANYways...
You know who you are, so this is just your fair warning that the next post contains information/discussion you might not want to read - You can if you want to, I just don't want you to be upset again. (I'm sure you can guess what it is about) That's all. But I've been writing the post all night in my head, and if I don't put it in, well, we all know how well that works.
So: Insert warning badge I haven't made yet, along with new banner that I also haven't made yet that basically says read next post at own risk.
Oh, and also: you can introduce yourself, if you'd like... If not, no biggie.
Hey everybody, say hey to one of my sisters, will ya?
;)
Well, one of my sisters has wised the hell up, and found my blog.
She actually found it quite a while back, and the first time she left me a comment I nearly threw up. I mean, I was trying to remember anything I'd ever written about her here, hoping I hadn't been to harsh in any of my posts about her, or our family, or spilled any secrets that I didn't want broadcasted. (To people who I might have to face over the dinner table, basically.) But I'm pretty good about that anyways, and the sister who found me out is - luckily - a sister who's capable of keeping a secret, a sister who I don't fear would use what she reads here against me....
Not that I'm all giving away ammunition and stuff, but still: some people in my family, if - god forbid - they should ever track me down here, I would never feel safe saying anything, I would always have to watch my words. And that's not what this place is for, so screw that. The only censoring I want to be doing is common sense censoring - you know, in case I get the urge to publish my social security number or something.
But she did tell me that anytime I wanted her to skip a post, I should just let her know: Personally, I think if someone told me "Don't read this!!" I would then feel compelled to READ IT IMMEDIATELY, but we shall see. We need some sort of bat signal or something that I can give you a visual clue that this post is not for you. Maybe I'll make a badge or something...
ANYways...
You know who you are, so this is just your fair warning that the next post contains information/discussion you might not want to read - You can if you want to, I just don't want you to be upset again. (I'm sure you can guess what it is about) That's all. But I've been writing the post all night in my head, and if I don't put it in, well, we all know how well that works.
So: Insert warning badge I haven't made yet, along with new banner that I also haven't made yet that basically says read next post at own risk.
Oh, and also: you can introduce yourself, if you'd like... If not, no biggie.
Hey everybody, say hey to one of my sisters, will ya?
;)
Friday, February 20, 2009
So I signed up for a TBR challenge, because I am looking at the amount of books I have to pack - 3 keeper bookcases, overfilled: 2 little plastic 3-drawer chests, also overfilled, of books I've listed on PaperbackSwap and am waiting to swap; all of my children's books (which are in 5 different Rubbermaid containers, three bookshelves in the parlor, and two bookshelves in the side of my desk); and my TBR 'pile', which, at present consists of 2 stacks under my bed (each 9 books high), 3 bins and the books tucked between my mattress and the bed frame (I'm counting 6 on this side) - and I am thinking that there will be no room in the new house for anything besides my books. (Not that we have a new house yet, HA! Am ignoring this fact as much as possible. Moving on!)
When I say that my keeper shelves are overfilled, I mean literally: I do not understand how people are able to 'display' things on book shelves... there is only room for books, and even then, there is still not nearly enough room for all the books. Oh, I've shown you the pretty book case, all organized by color and beautiful, but what I did not show you is the two other bookcases - also well organized (by genre, time period, &/or category), but also overflowing and extra-burdensome. (Also, the drawback of the by-color bookcase is that when you get a new book that should go on there somewhere, you have to shift the whole damn thing and try to make them fit... it's a little aggravating, but still totally worth it if only for the fact that people who Live In Your House and come in your room rather often, are only just noticing - after two years - the fact that it is color coded, thereby proving that they are totally oblivious, as has been previously suggested.)
So, the goal of joining the TBR challenge, for me, was to help me clear up a little bit of my TBR pile, and to commit to it publicly. But here's the thing: my to be read piles are varied and I am a finicky reader: I have to be in the mood to read a particular thing.
Right now in my non-fiction TBR I have a book on helping kids cope with divorce, another 3 or 4 about chronic illness, at least one about style (because I haven't got any), a book on photography, a memoir or two, and a book about food that I started reading in November and it scared me so much that I put it back in the pile, instead of having to starve to death because I could never eat anything again, ever. My fiction pile consists of a bunch of romance novels; a bunch of classics I keep meaning to read; a bunch of contemporary 'literature' that people told me was good or I read an intriguing review of; a few YA novels, a tiny bit of Sci-Fi, a comic book, and holy crap, let's not even start talking about the kids books.
And yet, with all that variety, the likelihood that I will still say "I don't have anything to read" is fairly high. (I will usually say this only to myself, of course, because members of my family are apt to react badly to this assertion, for reasons incomprehensible to me.)
So I've committed to the TBR challenge - for me, it's a 3:1 ratio: 3 from the TBR pile for every re-read or new buy - because I think I am judging my books to harshly - if they don't immediately 'call' to me, then I move on, usually to a reread from the keeper shelves, and the piles don't get any smaller.
Part of this is realistic - since I am no longer in school, I refuse to 'force' myself to read anything: if I am not in the mood for a book about killer food, then I will not read it, even if I know I should. (And will, eventually.) For optimum entertainment value, a book should suit your mood - it should be a good fit. I'm not going to throw that out the window, challenge or no. A second element to the mountainous TBR piles is that I continue to buy new books, which, also is unlikely to change. (Cannot not buy books: is physically impossible.)o
But another part of why my TBR pile never shrinks is a strange combination of laziness and fear - I fall back on the books I know will be good (because I've already read them) instead of attempting something new, taking the risk that this new book will have poorly plotted scenes or lacks witty dialogue. As long as those books stay in the TBR, they have promise, and too often that promise falls through once I start to actually read.
But I've decided that I don't like that aspect of myself - the playing it safe all the time part of me - all that much, and am trying to make changes when I see the opportunity to do so. Yes, this is a small thing, a trivial change, and no real hardship - if a book sucks, after all, I am not required to finish it: I just post it and move on. If it doesn't, and is instead wonderful, I have given myself a treat. Either way, the book is out of my TBR, and so: mission accomplished - but it feels good and necessary and like I'm doing something positive that, if I get the hang of it, might just carry over into other aspects of my life.
"Basically," you are saying to yourself now, "this entire post was her way of saying anything in her life can somehow be connected to books?" And you would be right, I expect. But at least I know I'm not alone.
When I say that my keeper shelves are overfilled, I mean literally: I do not understand how people are able to 'display' things on book shelves... there is only room for books, and even then, there is still not nearly enough room for all the books. Oh, I've shown you the pretty book case, all organized by color and beautiful, but what I did not show you is the two other bookcases - also well organized (by genre, time period, &/or category), but also overflowing and extra-burdensome. (Also, the drawback of the by-color bookcase is that when you get a new book that should go on there somewhere, you have to shift the whole damn thing and try to make them fit... it's a little aggravating, but still totally worth it if only for the fact that people who Live In Your House and come in your room rather often, are only just noticing - after two years - the fact that it is color coded, thereby proving that they are totally oblivious, as has been previously suggested.)
So, the goal of joining the TBR challenge, for me, was to help me clear up a little bit of my TBR pile, and to commit to it publicly. But here's the thing: my to be read piles are varied and I am a finicky reader: I have to be in the mood to read a particular thing.
Right now in my non-fiction TBR I have a book on helping kids cope with divorce, another 3 or 4 about chronic illness, at least one about style (because I haven't got any), a book on photography, a memoir or two, and a book about food that I started reading in November and it scared me so much that I put it back in the pile, instead of having to starve to death because I could never eat anything again, ever. My fiction pile consists of a bunch of romance novels; a bunch of classics I keep meaning to read; a bunch of contemporary 'literature' that people told me was good or I read an intriguing review of; a few YA novels, a tiny bit of Sci-Fi, a comic book, and holy crap, let's not even start talking about the kids books.
And yet, with all that variety, the likelihood that I will still say "I don't have anything to read" is fairly high. (I will usually say this only to myself, of course, because members of my family are apt to react badly to this assertion, for reasons incomprehensible to me.)
So I've committed to the TBR challenge - for me, it's a 3:1 ratio: 3 from the TBR pile for every re-read or new buy - because I think I am judging my books to harshly - if they don't immediately 'call' to me, then I move on, usually to a reread from the keeper shelves, and the piles don't get any smaller.
Part of this is realistic - since I am no longer in school, I refuse to 'force' myself to read anything: if I am not in the mood for a book about killer food, then I will not read it, even if I know I should. (And will, eventually.) For optimum entertainment value, a book should suit your mood - it should be a good fit. I'm not going to throw that out the window, challenge or no. A second element to the mountainous TBR piles is that I continue to buy new books, which, also is unlikely to change. (Cannot not buy books: is physically impossible.)o
But another part of why my TBR pile never shrinks is a strange combination of laziness and fear - I fall back on the books I know will be good (because I've already read them) instead of attempting something new, taking the risk that this new book will have poorly plotted scenes or lacks witty dialogue. As long as those books stay in the TBR, they have promise, and too often that promise falls through once I start to actually read.
But I've decided that I don't like that aspect of myself - the playing it safe all the time part of me - all that much, and am trying to make changes when I see the opportunity to do so. Yes, this is a small thing, a trivial change, and no real hardship - if a book sucks, after all, I am not required to finish it: I just post it and move on. If it doesn't, and is instead wonderful, I have given myself a treat. Either way, the book is out of my TBR, and so: mission accomplished - but it feels good and necessary and like I'm doing something positive that, if I get the hang of it, might just carry over into other aspects of my life.
"Basically," you are saying to yourself now, "this entire post was her way of saying anything in her life can somehow be connected to books?" And you would be right, I expect. But at least I know I'm not alone.
Friday, February 06, 2009
Just in case you wanted my opinion
(and if you didn't I don't suppose you'd be reading my blog, now would you?)
So here are my thoughts on a few (very random) things that have been floating around the world, the blogosphere &/or my brain for the last little bit:
Topic #1 -
Michael Phelps. Michael Phelps smoked pot. While not training for, or competing in, the Olympics. Therefore who the hell cares? Personally? I think the illegalization of marijuana is ridiculous, for a lot of reasons (and not just because of it's potential uses for chronic pain), and I think that making a big deal out of the fact that this kid (because he is only 23, and think of what YOU and your friends might have been doing then) smoked a little pot is even more ridiculous. Nobody should care... it was a 'mistake' only because it was illegal, and breaking the law: that's stupid (breaking the law while there are cameras there? even stupider. Breaking the law while there are cameras there and you are FAMOUS? Totally idiotic.) But pot can do that to you? Ever been with someone who's stoned? They're not exactly big thinkers just then, now are they? (Although they certainly think they are.) Should he lose contracts because of it? I think not, but the companies are certainly allowed to decide who should represent them. It seems to me that they wanted some superhero, and instead found out that they had hired an actual human being, and they might decide that's not good enough for them. Their call. My call is that everybody should just leave the poor guy alone - he didn't hurt anybody but himself here: From now on, every race, every meet, every record will have this asterisk next to it - at least mentally - and that's too bad. Just walk away, people: nothing to see here.
Topic #2 -
Now that I've just written all that pro-pot stuff, it occurs to me that you might wonder "Is NTE a pothead?" I'd like to just state - for the record - that I've never tried marijuana - but it's only because it's a smoking type of drug, and my asthma and smoke are not friends. I'd totally eat the special brownies that my cousin has promised to send to me, but so far - no go. If I did try it and it helped with my pain? I'd be putting it in my morning tea, people. Brownies for breakfast, lunch and dinner. Trust me. (Also, I have a lot of reasons behind the whole, "pot is not the devil drug that the government has made it out to be" line of thinking, but that would require resources, and I am not in the mood to go find them right now.. remind me to write my "legalize pot" post later on, will you?)
Topic #3 -
Valentine's Day. I. Am. So. Over. It.
There are times of the year where being single sucks more than normal. Valentine's Day is one of them. Mostly, it doesn't bother me, except that EVERYTHING is lovey-dovey, and it's making me feel very anti-love. I'd like to focus on the crafty side of it, like I usually do, but every time I take something out of the craft supplies, I have to think about how I'm going to sort it all out to pack it, and that gets distracting very quickly, and then I eventually run out of energy to do the actual craft. (It's a strange place, my head.) Mostly I'd just like to stop the commercials that try to convince me that everything from flowers to cars to jewelry would show someone how much I love them. It really wouldn't, but thanks for trying.
Topic #4 -
I have been reading an excellent book about disability, the experience of being a person with a disability, and how culture contributes to that experience. It's not a new book - from 96, actually - but I have just discovered it, and I have been Post-It flagging nearly every other page or so. It's wonderful: the author, Nancy Mairs, has MS, and she's able to say things so clearly, to explain the fears, the frustrations, the joys, the jokes of living this new kind of life, that I hardly want to write, because I'll never be able to say it better than she has. (This happens to me a lot: I think - "why even bother writing, because Joe or Molly has managed to say it better than I ever could?" It's a humbling and strange experience, because you're both grateful that somebody else is able to understand it and to communicate it, and sad because you can't figure out a way to communicate it too.) Anyways, here is a bit that I wanted to share with you today...
So here are my thoughts on a few (very random) things that have been floating around the world, the blogosphere &/or my brain for the last little bit:
Topic #1 -
Michael Phelps. Michael Phelps smoked pot. While not training for, or competing in, the Olympics. Therefore who the hell cares? Personally? I think the illegalization of marijuana is ridiculous, for a lot of reasons (and not just because of it's potential uses for chronic pain), and I think that making a big deal out of the fact that this kid (because he is only 23, and think of what YOU and your friends might have been doing then) smoked a little pot is even more ridiculous. Nobody should care... it was a 'mistake' only because it was illegal, and breaking the law: that's stupid (breaking the law while there are cameras there? even stupider. Breaking the law while there are cameras there and you are FAMOUS? Totally idiotic.) But pot can do that to you? Ever been with someone who's stoned? They're not exactly big thinkers just then, now are they? (Although they certainly think they are.) Should he lose contracts because of it? I think not, but the companies are certainly allowed to decide who should represent them. It seems to me that they wanted some superhero, and instead found out that they had hired an actual human being, and they might decide that's not good enough for them. Their call. My call is that everybody should just leave the poor guy alone - he didn't hurt anybody but himself here: From now on, every race, every meet, every record will have this asterisk next to it - at least mentally - and that's too bad. Just walk away, people: nothing to see here.
Topic #2 -
Now that I've just written all that pro-pot stuff, it occurs to me that you might wonder "Is NTE a pothead?" I'd like to just state - for the record - that I've never tried marijuana - but it's only because it's a smoking type of drug, and my asthma and smoke are not friends. I'd totally eat the special brownies that my cousin has promised to send to me, but so far - no go. If I did try it and it helped with my pain? I'd be putting it in my morning tea, people. Brownies for breakfast, lunch and dinner. Trust me. (Also, I have a lot of reasons behind the whole, "pot is not the devil drug that the government has made it out to be" line of thinking, but that would require resources, and I am not in the mood to go find them right now.. remind me to write my "legalize pot" post later on, will you?)
Topic #3 -
Valentine's Day. I. Am. So. Over. It.
There are times of the year where being single sucks more than normal. Valentine's Day is one of them. Mostly, it doesn't bother me, except that EVERYTHING is lovey-dovey, and it's making me feel very anti-love. I'd like to focus on the crafty side of it, like I usually do, but every time I take something out of the craft supplies, I have to think about how I'm going to sort it all out to pack it, and that gets distracting very quickly, and then I eventually run out of energy to do the actual craft. (It's a strange place, my head.) Mostly I'd just like to stop the commercials that try to convince me that everything from flowers to cars to jewelry would show someone how much I love them. It really wouldn't, but thanks for trying.
Topic #4 -
I have been reading an excellent book about disability, the experience of being a person with a disability, and how culture contributes to that experience. It's not a new book - from 96, actually - but I have just discovered it, and I have been Post-It flagging nearly every other page or so. It's wonderful: the author, Nancy Mairs, has MS, and she's able to say things so clearly, to explain the fears, the frustrations, the joys, the jokes of living this new kind of life, that I hardly want to write, because I'll never be able to say it better than she has. (This happens to me a lot: I think - "why even bother writing, because Joe or Molly has managed to say it better than I ever could?" It's a humbling and strange experience, because you're both grateful that somebody else is able to understand it and to communicate it, and sad because you can't figure out a way to communicate it too.) Anyways, here is a bit that I wanted to share with you today...
“In a society that prates about, but seldom practices, communication, the craving to be listened to, heard, understood – which originates with the first terrified wail, the circling arms, the breast, the consolatory murmur – is hard to assuage. And because a cripple, in order to earn a shot at social intercourse with “normals,” must never publicly lament her state, must preferably never even mention it, an other who treats disability as a safe topic of conversation offers immeasurable relief…” p7
Thanks, guys, for being my 'other'.
Wednesday, January 28, 2009
So I know I've been lax in the coming back blogging, but I find that I am still running really, really slowly. Like my energy tank (which is always at about a quarter full anyways) totally forgot how to distribute that quarter tank to the places it needs to go. I'm doing a lot of wheezing, a lot of sitting up too fast and having my head spin and almost blacking out, a lot of stuff I thought I was pretty much adapted to, but am apparently not. (Actually, it's kind of pissing me off this whole "Just when I think I get used to how things are and have stuff at a vaguely controlled level, my body decides to screw with me some more and start all over again" crap is beyond irritating, but I am still feeling so SO much better than I was two weeks ago, so it feels sort of petty to complain now. We'll see, as time goes on if that attitude sticks or not.)
I do keep thinking of things to blog, even look over at the computer and will my thoughts to go from my brain directly onto the screen without any additional effort on my part, but I have yet to master this skill (any tips?), and so posts remain unwritten.
In the meantime, I have been (very, very slowly) combing through the 1000+ items in my Google Reader, and here are a few of the posts I read today that I thought "Hey I could've written that!" (Except it never would've come out this good, so you're lucky I'm pointing you to them...) and in an effort to both highlight exceptional posts and clean out my brain a little bit, I give you some links:
Amalah asks: "Can't anyone just be SAD anymore?" and one of her commenters leaves the brilliant reply that there is a difference between "rational sadness and irrational sadness". That comment really lit up parts of my brain that have been taking me to task for not accomplishing all I should (/want/need to) be accomplishing right now...sometimes there are reasons for taking it slow, and that's ok. Sometimes there are reasons for being sad, and that's alright. It's the times when there is no rationale, no reasoning: those are the times you have to worry about. (In other words: cut yourself some slack, dummy.)
Melissa over at Suburban Bliss writes a familiar-feeling post about moving that hits really close to home:
Y'all know how close I am to my mom, and how hard it has been this past year when she hasn't been all... here. She's been dealing with losing her mother, her house, & almost her sister; she has her own health issues, all of the stuff I have been ranting about here - the wedding stress, my brother and his 'wife', dad, the kiddos, me, and on and on and on - a million plus things to deal with, so I'm not saying she doesn't have a perfect right to be as checked out as she needs to be, but I think this is a safe enough place to say that it hurts. It hurts me to not be able to say the words that she needs to hear, to not be able to ask her to say the words I need to hear - the wanting to make things easier for her, winds up, inevitably, making things harder for me.
(Not just emotionally, but physically too: there are a lot of things I could use help on that I hesitate to ask for help because it's just not good timing. Having her as my PCA and not being able to ask for what I need has been a whole hateful level of awkward and awful to our relationship.) Chicken and Cheese talks about her own relationship with her mother, and how the stresses of her life keep piling up, and how frustrating it is to know that you've had this plan, and how "it turns out that plan was built out of Popsicle sticks." I'm feeling very "Popsicle stick" built myself, lately, and that post made me cry a little.
On Sunday, I went to another wake. My best friend/college roommate's husband's grandmother, a lady I met only briefly and barely knew died last week, after a frighteningly quick battle with pancreatic cancer. My roommate's favorite in-law, and a sweet woman, with a wonderful best friend who I sat with at the wake and listened to for an hour. Last month, I was too sick to go to the wake of my Nana's cousin in-law, the kleptomaniac who eventually went almost completely blind but still insisted on writing her own Christmas cards ("Merry Christmas, Love Irene - Sorry this is messy but I am blind you know.") Basically, I am sick of going to wakes, to funerals, to places of grief. I am sick of grieving. And yet, it's not going anywhere, it's a part of our lives. But I'm with Meredith: It just doesn't seem right.
The Servant over at Serving the Queens lost someone that matters to her, recently, and she talks beautifully, heartbreakingly, about loss and love:
I'll keep them, and their families, in my prayers, and keep hoping for them as I hope for all of us.
Looking back, it seems like my brain is full of sadder things, but that I'm in good company. I do hope that we'll all be feeling better, soon. That life will start giving us some breaks, give us a chance to catch our collective breath.
Hope you are breathing well, and I be back!
I do keep thinking of things to blog, even look over at the computer and will my thoughts to go from my brain directly onto the screen without any additional effort on my part, but I have yet to master this skill (any tips?), and so posts remain unwritten.
In the meantime, I have been (very, very slowly) combing through the 1000+ items in my Google Reader, and here are a few of the posts I read today that I thought "Hey I could've written that!" (Except it never would've come out this good, so you're lucky I'm pointing you to them...) and in an effort to both highlight exceptional posts and clean out my brain a little bit, I give you some links:
Amalah asks: "Can't anyone just be SAD anymore?" and one of her commenters leaves the brilliant reply that there is a difference between "rational sadness and irrational sadness". That comment really lit up parts of my brain that have been taking me to task for not accomplishing all I should (/want/need to) be accomplishing right now...sometimes there are reasons for taking it slow, and that's ok. Sometimes there are reasons for being sad, and that's alright. It's the times when there is no rationale, no reasoning: those are the times you have to worry about. (In other words: cut yourself some slack, dummy.)
Melissa over at Suburban Bliss writes a familiar-feeling post about moving that hits really close to home:
"The problem with moving when you're practicing Extreme Denial is you don't actually pack anything when you're preparing for a pretend move. You tend to think you'll "pretend pack" when the "pretend move" is closer."We signed our package and sale yesterday. We have till March 30th to vacate the premises. We still have nowhere to vacate to, are living in a mess of boxes and stuff (but not stuff in boxes) and I am stuck somewhere between extreme panic and extreme denial... but mostly I'm just stuck.
Y'all know how close I am to my mom, and how hard it has been this past year when she hasn't been all... here. She's been dealing with losing her mother, her house, & almost her sister; she has her own health issues, all of the stuff I have been ranting about here - the wedding stress, my brother and his 'wife', dad, the kiddos, me, and on and on and on - a million plus things to deal with, so I'm not saying she doesn't have a perfect right to be as checked out as she needs to be, but I think this is a safe enough place to say that it hurts. It hurts me to not be able to say the words that she needs to hear, to not be able to ask her to say the words I need to hear - the wanting to make things easier for her, winds up, inevitably, making things harder for me.
(Not just emotionally, but physically too: there are a lot of things I could use help on that I hesitate to ask for help because it's just not good timing. Having her as my PCA and not being able to ask for what I need has been a whole hateful level of awkward and awful to our relationship.) Chicken and Cheese talks about her own relationship with her mother, and how the stresses of her life keep piling up, and how frustrating it is to know that you've had this plan, and how "it turns out that plan was built out of Popsicle sticks." I'm feeling very "Popsicle stick" built myself, lately, and that post made me cry a little.
On Sunday, I went to another wake. My best friend/college roommate's husband's grandmother, a lady I met only briefly and barely knew died last week, after a frighteningly quick battle with pancreatic cancer. My roommate's favorite in-law, and a sweet woman, with a wonderful best friend who I sat with at the wake and listened to for an hour. Last month, I was too sick to go to the wake of my Nana's cousin in-law, the kleptomaniac who eventually went almost completely blind but still insisted on writing her own Christmas cards ("Merry Christmas, Love Irene - Sorry this is messy but I am blind you know.") Basically, I am sick of going to wakes, to funerals, to places of grief. I am sick of grieving. And yet, it's not going anywhere, it's a part of our lives. But I'm with Meredith: It just doesn't seem right.
cancer is not something you expect to hear on a friday morning. not ever. not on a sunny day when life is already out of balance. cancer is not something that creeps into a man so alive, so tan, so good at doing hand stands for his kids at the community pool all those years ago.
my dad can’t have cancer.
not today.
not tomorrow.
not ever.
The Servant over at Serving the Queens lost someone that matters to her, recently, and she talks beautifully, heartbreakingly, about loss and love:
For the time being, these things do not change what is the truth to me right now, and that truth is achingly painful, and I am indescribably sad.
He is gone.
And so I weep.
I'll keep them, and their families, in my prayers, and keep hoping for them as I hope for all of us.
Looking back, it seems like my brain is full of sadder things, but that I'm in good company. I do hope that we'll all be feeling better, soon. That life will start giving us some breaks, give us a chance to catch our collective breath.
Hope you are breathing well, and I be back!
Sunday, October 05, 2008
Hey, if I wrote it on time,
even ahead of time, that counts, right? So, here's my blog-oversary post, a week (or two) late.
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If you can believe it, my blog is 3 years old! I'm as surprised as you are (if only because it means this laptop that has given me sooo many problems is 3 1/2 and I ready to throw it out the window already). My very first post was a mess and a half, through no fault of my own, and hopefully things have improved since then.
It's been a busy three years, as far as my computer skills go: I've learned basic - maybe even a quarter of a step above basic - html, designed my own masthead (which I want to change again), & blogged 30 days in a row, two years in a row. I still don't understand half of what my statcounter is purporting to tell me, but I did figure out how to tell how everybody is getting here, which has been enjoyable. I also figured out how to post pictures - and a flickr badge! - and found some amazing blogs to help me learn how to take better pictures.
I've done some memes, been most pleasantly surprised to receive an award or two, and been included in a few carnivals, and some time in the near future I'm going to guest post on someone else's blog for the first time! It's all been so exciting, so important to me.
I'm exceptionally proud of the work I've done for Blogging Against Disabilism Day, CFIDS & FM awareness, and my ability to randomly proclaim things.
Looking back, I'd certainly rather have had less PUS posts (as I would certainly rather have less PUS, but as we get going towards finding a new place to live, that is a goal much closer within reach, thankfully); I know there are times when I need a blogging break, and that it's cost me some readers over the years; I wish I was better at remembering I've started a draft and actually finishing it (72! 72 Drafts?? C'mon, NTE, you can do better); and I know there are some things that need tweaking (like the color of the hyperlink text, which is nearly identical to the regular text), but overall, I'm just so glad to have this place, this space to be me. To think aloud and have these discussions with all of you.
And I'm more grateful than I can say that you come by, comment, and care.
Thank you, so, so much.
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If you can believe it, my blog is 3 years old! I'm as surprised as you are (if only because it means this laptop that has given me sooo many problems is 3 1/2 and I ready to throw it out the window already). My very first post was a mess and a half, through no fault of my own, and hopefully things have improved since then.
It's been a busy three years, as far as my computer skills go: I've learned basic - maybe even a quarter of a step above basic - html, designed my own masthead (which I want to change again), & blogged 30 days in a row, two years in a row. I still don't understand half of what my statcounter is purporting to tell me, but I did figure out how to tell how everybody is getting here, which has been enjoyable. I also figured out how to post pictures - and a flickr badge! - and found some amazing blogs to help me learn how to take better pictures.
I've done some memes, been most pleasantly surprised to receive an award or two, and been included in a few carnivals, and some time in the near future I'm going to guest post on someone else's blog for the first time! It's all been so exciting, so important to me.
I'm exceptionally proud of the work I've done for Blogging Against Disabilism Day, CFIDS & FM awareness, and my ability to randomly proclaim things.
Looking back, I'd certainly rather have had less PUS posts (as I would certainly rather have less PUS, but as we get going towards finding a new place to live, that is a goal much closer within reach, thankfully); I know there are times when I need a blogging break, and that it's cost me some readers over the years; I wish I was better at remembering I've started a draft and actually finishing it (72! 72 Drafts?? C'mon, NTE, you can do better); and I know there are some things that need tweaking (like the color of the hyperlink text, which is nearly identical to the regular text), but overall, I'm just so glad to have this place, this space to be me. To think aloud and have these discussions with all of you.
And I'm more grateful than I can say that you come by, comment, and care.
Thank you, so, so much.
Monday, August 18, 2008
You wanna know the truth?
I just haven't felt like it.
That's why I've been so quiet here lately... I just haven't felt like it. I'm a little bit in my shell these past few weeks: a bit of bad news here, an added responsibility there; a lame attempt to clean up some of the clutter in my room (and life); projects to finish and discoveries to make; a book that's scaring the shit out of me (and making me consider what I'm putting into my body and what I'm expecting out of it); doctors' offices to fight with (or ignore); mosquitoes to swat away, plagues to prevent; a little bit of time for reflection on the crappy year that's been, and the time that's yet to come; just stuff. Life and stuff.
And so, my brain says things like "You should blog this. Or at least write it down so you'll have something to blog when you get around to it," and another part of my brain goes "Nah." It's pretty obvious which part has been winning.
Also? It kind of got to the point where I just felt like I was complaining about the same things over and over again, sharing the same pictures over and over again, telling you ... nothing, really. And I don't want to blog like that.
So, I'm going to try to work it out. Whether that means I post more, or less, or whatever... I'm not sure yet. But we'll figure it out. I hope you stick around.
I'd miss you if you left.
That's why I've been so quiet here lately... I just haven't felt like it. I'm a little bit in my shell these past few weeks: a bit of bad news here, an added responsibility there; a lame attempt to clean up some of the clutter in my room (and life); projects to finish and discoveries to make; a book that's scaring the shit out of me (and making me consider what I'm putting into my body and what I'm expecting out of it); doctors' offices to fight with (or ignore); mosquitoes to swat away, plagues to prevent; a little bit of time for reflection on the crappy year that's been, and the time that's yet to come; just stuff. Life and stuff.
And so, my brain says things like "You should blog this. Or at least write it down so you'll have something to blog when you get around to it," and another part of my brain goes "Nah." It's pretty obvious which part has been winning.
Also? It kind of got to the point where I just felt like I was complaining about the same things over and over again, sharing the same pictures over and over again, telling you ... nothing, really. And I don't want to blog like that.
So, I'm going to try to work it out. Whether that means I post more, or less, or whatever... I'm not sure yet. But we'll figure it out. I hope you stick around.
I'd miss you if you left.
Friday, July 11, 2008
An outing, a book review, a little bit more
Last night I actually left the house for a non-medical, non-wedding, non-child related reason, and went out and socialized with adults!
I know, it's a shock and a half, isn't it?
I went down to Porter Square Books to meet the very fabulous Laurie, who was holding a signing for her brand new book A Life Disturbed. I'm going to start off by telling you all how utterly awesome this book is: If you read A Chronic Dose, than you know that Laurie's style of writing is intelligent, witty, and honest, which are pretty much the ingredients I consider vital in a good writer. You gotta be smart, you gotta be funny, and you gotta believe in what you're telling me, because any of those three things are lacking, I'm just not going to buy into it. Laurie is, of course, not missing out on any of those factors, and it makes for great reading on her blog and in her book.
The book is a series of essays that discuss what it's like to live with a chronic illness as a young adult. Laurie talks about so many things that I talk about here on this blog: how do you merge being independently minded and having to depend on people for your very health? How does society view those of us who are chronically ill (and how can we not care so very much about how people see us)? What are the gives and takes that chronic illness imposes on our relationships, and how do you cope with them?
I can't tell you how many times over the past 14 years I've thought that I was by myself. Even surrounded by a family who loves me and tries their best to understand, even with the few stalwart friends I had to support me at every turn, even with a doctor who kept pushing, kept looking for the answer: There were still (and are still) so many times that I think "I am the one going through this, and it's a lonely place to be." When I found my first CFIDS listserve (way back in 96-ish), it was like finding a tribe of 'my people' (as we called them). These were people who were my age, who were facing the same things I was facing. Who understood what it meant that I had to give up dancing; who cried with me when I missed my Jr Prom because I had pneumonia; who got together and made me a scrapbook when I was bed bound for 3 months. They understood what it was like to fight with your mom, but then still need her to help you get to the bathroom. To be missing classes and feel like you'd never catch up, but to care more about missing out on the talking that went on between classes or at lunch.
I started gaining friends from all over the world, with a wide spectrum of diseases: It didn't matter that our specific diagnoses were different, we still understood each other. They were the people who knew the shorthand of being sick, and I have been comforted immensely by their presence in my life.
When I stumbled into the medical blogosphere (about 2 and a half years ago now), I felt exactly the same way: These were the people who were saying what I was thinking, who I could ask about treatment or television or anything in between. Who understand that it's not all about being sick, but that it's never not about being sick. And so, my 'tribe' expanded, and I have been much the luckier for it.
I've been visiting Laurie's blog for about 2 years now, and she's definitely one of my people: She just gets it. She talks about all of the things that are important in her life, and because her life is impacted by her illnesses, than so are those things. Who she is isn't just 'the sick girl,' but she understands how it feels to be seen that way. In her book, and at the signing last night, she talked a bit about suffering and chronic illness, and how if you're going to go looking for plus sides to the suffering... and you'll have to look really, really hard, because it doesn't have all that many... maybe it's that you can see the suffering, understand the suffering of others. One thing about Laurie's blog, and now the book, is that her ability to empathize is front and center.
But she doesn't gloss over everything either: Life Disrupted is subtitled "Getting Real about Chronic Illness in your Twenties & Thirties," and it follows through on that... There's not a martyr or saint in the mix, and she busts more than one myth about disabled young adults. She talks about employment, marriage, money, & babies - The title of that chapter: "Can vs Should" pretty much sums it up, and I'll just let you know that I cried my way through that entire chapter, but that's something we'll talk about at another time. Even though there were some really tough parts, it was only because they're so true to life... to my life, anyways.
But there's millions of us out there: young adults with disabilities and chronic illnesses, who are all just trying to figure it out as we struggle through it. Everybody struggles - you all know how many things there are that you're making decisions about in your life, every single day: you know how complex and difficult it is to balance all of your needs together. Now imagine adding a chronic illness to that, and it's just one more thing that tips the scales. So it's nice to be a part of a community that helps you to work through those things, and it's nice to see that books like Laurie's can get published. Because people need to know, and she did a wonderful job of telling them.
She also threw a fan-tas-tic book signing, if I do say so: It may have been my first, but I found it impressive - packed and welcoming. Laurie and her family were exceptionally nice to me - I met her Dad, who had strict orders to keep to the back rows and busy himself with his camera, and who couldn't have been any prouder, I don't think. I didn't get to meet her husband John, but he waved to me as I was leaving, which I thought was nice. People I can only assume were her friends started up conversations with me, and let me sneak in the signing line when it had wrapped around to a place my chair wouldn't fit. And Laurie herself was just as nice in person as she is online... she answered questions honestly and with humor, wrote a sweet message in my copy of the book, and even invited me to a little party they were having after the signing. Which, unfortunately, I couldn't get to b/c it had already been quite a long day for me, and I was worn out, but I hope that she had a wonderful time, and that this won't be our only in-person meeting.
Laurie, congratulations on the book: it's fabulous, the signing was great, and I'm so glad to have met you!
Other peoples, particularly those of you who are interested/have no choice but to be interested in living with chronic illnesses: Buy Laurie's Book!
I know, it's a shock and a half, isn't it?
I went down to Porter Square Books to meet the very fabulous Laurie, who was holding a signing for her brand new book A Life Disturbed. I'm going to start off by telling you all how utterly awesome this book is: If you read A Chronic Dose, than you know that Laurie's style of writing is intelligent, witty, and honest, which are pretty much the ingredients I consider vital in a good writer. You gotta be smart, you gotta be funny, and you gotta believe in what you're telling me, because any of those three things are lacking, I'm just not going to buy into it. Laurie is, of course, not missing out on any of those factors, and it makes for great reading on her blog and in her book.
The book is a series of essays that discuss what it's like to live with a chronic illness as a young adult. Laurie talks about so many things that I talk about here on this blog: how do you merge being independently minded and having to depend on people for your very health? How does society view those of us who are chronically ill (and how can we not care so very much about how people see us)? What are the gives and takes that chronic illness imposes on our relationships, and how do you cope with them?
I can't tell you how many times over the past 14 years I've thought that I was by myself. Even surrounded by a family who loves me and tries their best to understand, even with the few stalwart friends I had to support me at every turn, even with a doctor who kept pushing, kept looking for the answer: There were still (and are still) so many times that I think "I am the one going through this, and it's a lonely place to be." When I found my first CFIDS listserve (way back in 96-ish), it was like finding a tribe of 'my people' (as we called them). These were people who were my age, who were facing the same things I was facing. Who understood what it meant that I had to give up dancing; who cried with me when I missed my Jr Prom because I had pneumonia; who got together and made me a scrapbook when I was bed bound for 3 months. They understood what it was like to fight with your mom, but then still need her to help you get to the bathroom. To be missing classes and feel like you'd never catch up, but to care more about missing out on the talking that went on between classes or at lunch.
I started gaining friends from all over the world, with a wide spectrum of diseases: It didn't matter that our specific diagnoses were different, we still understood each other. They were the people who knew the shorthand of being sick, and I have been comforted immensely by their presence in my life.
When I stumbled into the medical blogosphere (about 2 and a half years ago now), I felt exactly the same way: These were the people who were saying what I was thinking, who I could ask about treatment or television or anything in between. Who understand that it's not all about being sick, but that it's never not about being sick. And so, my 'tribe' expanded, and I have been much the luckier for it.
I've been visiting Laurie's blog for about 2 years now, and she's definitely one of my people: She just gets it. She talks about all of the things that are important in her life, and because her life is impacted by her illnesses, than so are those things. Who she is isn't just 'the sick girl,' but she understands how it feels to be seen that way. In her book, and at the signing last night, she talked a bit about suffering and chronic illness, and how if you're going to go looking for plus sides to the suffering... and you'll have to look really, really hard, because it doesn't have all that many... maybe it's that you can see the suffering, understand the suffering of others. One thing about Laurie's blog, and now the book, is that her ability to empathize is front and center.
But she doesn't gloss over everything either: Life Disrupted is subtitled "Getting Real about Chronic Illness in your Twenties & Thirties," and it follows through on that... There's not a martyr or saint in the mix, and she busts more than one myth about disabled young adults. She talks about employment, marriage, money, & babies - The title of that chapter: "Can vs Should" pretty much sums it up, and I'll just let you know that I cried my way through that entire chapter, but that's something we'll talk about at another time. Even though there were some really tough parts, it was only because they're so true to life... to my life, anyways.
But there's millions of us out there: young adults with disabilities and chronic illnesses, who are all just trying to figure it out as we struggle through it. Everybody struggles - you all know how many things there are that you're making decisions about in your life, every single day: you know how complex and difficult it is to balance all of your needs together. Now imagine adding a chronic illness to that, and it's just one more thing that tips the scales. So it's nice to be a part of a community that helps you to work through those things, and it's nice to see that books like Laurie's can get published. Because people need to know, and she did a wonderful job of telling them.
She also threw a fan-tas-tic book signing, if I do say so: It may have been my first, but I found it impressive - packed and welcoming. Laurie and her family were exceptionally nice to me - I met her Dad, who had strict orders to keep to the back rows and busy himself with his camera, and who couldn't have been any prouder, I don't think. I didn't get to meet her husband John, but he waved to me as I was leaving, which I thought was nice. People I can only assume were her friends started up conversations with me, and let me sneak in the signing line when it had wrapped around to a place my chair wouldn't fit. And Laurie herself was just as nice in person as she is online... she answered questions honestly and with humor, wrote a sweet message in my copy of the book, and even invited me to a little party they were having after the signing. Which, unfortunately, I couldn't get to b/c it had already been quite a long day for me, and I was worn out, but I hope that she had a wonderful time, and that this won't be our only in-person meeting.
Laurie, congratulations on the book: it's fabulous, the signing was great, and I'm so glad to have met you!
Other peoples, particularly those of you who are interested/have no choice but to be interested in living with chronic illnesses: Buy Laurie's Book!
Thursday, May 01, 2008
Who're we quoting? (BADD edition)
Alright guys, I'm about halfway through the BADD posts, and they are sooo excellent!! I mean, just mind-blowingly amazing pieces about the political, the personal, the polite, the rude, the ramps, the wrongs and rights, the feelings and the future. I thought I'd give you a glimpse, if you didn't have hours of time to devote today, although I'd go back to Goldfish's place and just start wandering if you had a few minutes.
Here are some of the highlights I've found so far:
This post by Hoyden About Town, who talks a lot about the political ramifications of disability, good crip vs bad crip, and "shiny happy super powers:" What more could you want?
But the reality is, people with disabilities are far more varied and complicated, not a collection of conveniently-cliched characters in morality plays and Hallmark specials. Some of us have carer responsibilities ourselves. And hobbies. And political ideas. And social lives. We are not potplants, pets, malingerers, inspirations, handfuls, beds, wheelchairs, freakshows, mascots, superheroes, or angels. Just people. With lives that aren’t reducible to being an economic unit or someone else’s encumbrance.
From the comment section of Missnomered's BADD post, Amanda's comment about CFIDS and how people are always volunteering cures: It seems as if you’re supposed to devote your entire life to “getting better,” and nothing to just living your life. If you try to just live your life, then that is oddly enough called “giving up”.
A fabulous line from Cripchik's ... I'm going to call it a call to arms: Life happens to be of higher quality, you know, when you can actually do things like breathe.
Then there's this post about Stereotype Threat, and the self fulfilling prophecy, a notion which I find both unendingly complicated and frighteningly simple, but ends with this wonderful tidbit: Activism--feminism, anti-racism, anti-classism, and most relevantly anti-disablism--by challenging stereotypes actually makes them less true. Isn't that brilliant? Doesn't that give you hope?
There were a ton of CFIDS/ME/FM illness related posts, (that I've read so far), which is a hard thing to swallow. It's sad, on the one hand to know that there are so many of us out there suffering, and on the other? It's so heartening to know that there are people who understand. Like this line from
tigertale7, who's experiences with doctors are eerily familiar... Chances are, if you're only seeing me every several weeks or longer? You're not seeing the reality of my illness.
And then there's JayAngel's post... with a fabulous description of healthy privilege, and how you can have it and not even know (Don't worry, I used to be the same way.)& what it means in your interactions with People with Disabilities...
When you get sick, and you feel crappy and people expect you to function normally and you can’t and you’re grumpy and you feel awful, you know you’ll get better, and you get treated or wait the cold out and then you feel okay again. I don’t get to do that, I don’t get to know that.
Healthy people don’t have to fight for every ounce of energy they have. And that comes across, all the time, when you have no idea it does. And all I want from you, those with healthy privilege, is to see and acknowledge that there are disabled people in this world, and you can’t expect them to be able to do everything you can do at the drop of a hat. Don’t come upon the words “I can’t come out tonight” and hear “I don’t want to come out with you”. Hear what is being said, which is “I don’t have the energy to do all of the activity needed to come out tonight”. If a doctor is told by a patient that they are bedbound and need a home visit, I would like that doctor to hear “I am bedbound and wish to be cooperative and get treatment; I am asking you for help” instead of “I just need to be encouraged to make the requisite effort”. If you go to a friend’s house and their sister’s friend, who has CFS, is lying exhausted on the couch and declines the offer of joining everyone else on a walk, please try to hear what is being said, “I am ill and exhausted, but appreciate being included in the offer”, rather than hearing “I’m too lazy to go for a walk, I’d rather lie here”.
...And I'm in danger of copying her whole post... just go over there and check it out, will you?
I'm taking them as I can, so we may be back with even more fabulousness, as I get to them. Happy Sunday, all.
A BADD Post for you
Hi Everybody ~ Welcome to Blogging Against Disabilism Day! I had a heck of time deciding what I was going to write about today, so I did what I usually do when faced with a decision I don't want to make: I procrastinated. I tidied up my piles a bit, brushed my teeth again, started to balance my checkbook. And as I was adding in today's SSDI payment, I remembered all the journal entries I had written about applying for SSDI and what it felt like, to me. I don't talk about money too much here at NTE,(except for the fact that I don't have any) but money and disability - specifically poverty and disability - are intricately linked. In the United States, and around the world, individuals with disabilities are more likely to live in poverty, and according to the World Bank, in third world countries, they make up a disproportionate segment of the "grindingly poor."
I am fortunate enough that these are not my circumstances: I am not among those living in poverty. I have benefits above and beyond what many of those with disabilities can expect in their own lives - I live in the US were I can count on some measure of support from my government - in the form of reduced cost/free medical care and the money I get from SSDI (at least for now, we'll see what November brings). But even that is not enough for me to live independently - were it not for my parents, I would have to make the choice every month between food and shelter, not to mention medications, clothing and other necessities of life. There are housing programs in my area, but they are troubled with the same burdens of all other social services programs: long waiting lists, a one-size-fits-all mentality (which almost never fit me), and lack of funding. Either way, without my parents, making it, financially, would be extremely difficult. It's a constant worry, even with them, but I have this cushion here, which allows me to afford things like Internet (yay!) to make my life more comfortable.
But the choice to apply for SSDI, and then following through the long and difficult process is something that most people don't really think about. So I've dug through my journals and come up with two entries on the subject... the first is from August of 2003, when I applied (for the 3rd time) for SSDI, and was feeling, well, you'll see how many different things I was feeling about it:
Nobody ever says "this is what it is like to be 24 and applying for Social Security." well, this is what it's like.
It's like you've failed. Like you're never going to be able to be more - do more - than you are right now. As if all the dreams and goals you have for yourself are as far out of reach as Mercury - and always will be.
It's embarrassing - to have a Master's Degree - to have earned a Master's Degree - and still be incapable of using it. To be filling out form after form after form where you have to clearly and concisely list all of your inadequacies, even the ones you avoid acknowledging to yourself. To say "Yes, I had wanted to be a teacher, responsible for the care and cultivation of young minds, hearts, souls and bodies, but right now I can't even be left alone to get to the bathroom." To be forced to admit - particularly to yourself - just how bad it really is: how many days a week you can't get out of bed, how many times a day you require help, how you can't lift over 5 pounds, how you can't tie your own shoe some days.
It's frustrating. Especially with such a load of 'controversial' diagnoses (CFIDS/FM/etc) to think that after I've bared my worst secrets and groveled for money I'd much rather be busy earning, that they might not believe me, or think that I've exaggerated, or turn me down - again. As if I had no interest in doing more than lying here, pretending to live. As if my sole goal in life was to get other people to support me - so I could live at home with my parents forever, and spend my time watching Law and Order re-runs on TV.
It's like saying "I give up." And this is the hardest one to swallow. Because I don't give up. What I'm really trying to say is "I just can't do it right now, and I need your help," but that's not what it feels like I'm saying. It feels like I did give up, and now have to beg for enough money to live.
It feels helpless, powerless... to wait until some faceless and medically ignorant bureaucrat decides whether or not I'm sick enough to deserve help. I have applied for SSDI twice already, and each time I was denied. A part of me, a not so small part, rejoiced when they said no, although I needed the money and was totally unable to work, because it meant that I wasn't sick enough - I wasn't the hopeless & forever kind of sick.
It feels futile - to know how much of life I am missing out on, and to be unable to do anything about it. What do you do after your doctor - and every other available, knowledgeable doctor - says "we just don't know what else to do... we can't really help you yet." I know that some people lead crusades to help themselves, or the ones they love. I admire them, I do, but I don't have that strength. I just don't. For me, each day is a battle - from breathing, to sleeping, even eating - every.single.thing. is a challenge right now. I honestly can not remember a pain free day - my last pain free day... I don't know when it was. So that's the only battle I'm up to fighting right now - I wish it wasn't. But it is.
It's more of just living in 'until'. Maybe even the ultimate step of living in 'until' because I've made it official: "Until I can care for myself, do for myself, earn for myself, I need this help. I need this money. To live. To be. Please Help."
It's sad.
It's scary.
It's yet another aspect of being ill that I would have rather passed on by, thank you very much.
But right now? It's also necessary - for my survival, for my sanity, for me. So I'm doing it, again, and I'll hope for the best (even if I'll be praying that by the time they decide, I won't need it anymore.)
The second is from January of 2004, when I received my first check (including the back money from when I'd first applied), and you'll see that my feelings about the money are still pretty complicated:
Got my first SSI check today: $3000! The most money I've ever had in my whole life. I've been vacillating all day between being upset and being happy. First I think, "All of this money, and I did nothing to earn it!" Then I think "Hell yes, I earned it: nine years of dealing with a life altering disease. All consuming chronic pain, dozens of doctors and diseases with no names or treatments; all the complications that nobody expected or could explain, all the symptoms that interfere with my every day, my every hope or ambition or dream." So did I earn it? I suspect I did. But it still doesn't feel good, the way I expect a paycheck would feel: Earned free and clear, through doing the job you love (or hate, as the case may be). A good day's pay for a good day's work. Plus, it feels so final, as if there is little hope for change or improvement.
I just don't know what or how to feel. It's very confusing.
I do need the money: even though I'm living at home, off my parents, basically, I need to be able to contribute something. And still, I'm too sick to take this money and actually do anything with it. Even if I have earned it, I can't just spend it: I'm too sick to shop, even. *This is obviously before I got my laptop and a debit card.* This day is just too conflicting... I don't know what to think.
What are my thoughts today, four years later and unfortunately still on SSDI? Still pretty conflicted.
In some ways, it's a lot easier now than it was then: I've since done a lot of thinking about the responsibilities of the government towards it's people and the need for social services, etc. I don't have a lot of questions about whether or not I 'deserve' the money - I pretty much figure I don't 'deserve' my illness either, but if I'm stuck with that, I should ask for the help I need if it's available. I've gotten to the point where I don't always feel as helpless/powerless with my situation, because I have doctors who work with me and friends who listen when I've feeling overwhelmed.
But I'm still sad and upset that I'm not doing what I want to be doing with my life, that it's just not possible to be working (or having a family or traveling or any of the millions of other things I want to do that require more than I have to give). That's not something that goes away. I don't think it should go away, personally, because that would be like giving up: I've adjusted a lot of my dreams to fit me for now: watching the children in my family, helping to care for them as they grow or writing for websites and on this blog because it's something I can do that keeps me connected to my dreams as well as the rest of the world. I may still be living in 'until...', but I've made 'until...' fit me as best as I can.
Anyways, that seems like a very long post, not just about money, but about all of the feelings that come along with asking your government for financial help. I don't know what other peoples' experiences are, but this is is how it felt for me, to be 24 years old and to realize I wasn't going to make it without some financial help. I was lucky enough that it was available to me, I realize now, and the past few years would've been a lot tougher without it. So for today, I'll be grateful, even if I'd still rather be working. I'd still rather be earning my money at a job I love, feeling like I was doing more than making it through the day.
And now I'd like to direct you to the hub of BADD, Diary of A Goldfish, where there's a zillion and one more posts about a zillion and one more topics, all related, in some way to disability. Even if you can't get through them all today (yeah... I tried that last year... it did not work out), bookmark the page and get to them as you can: I know I will be.
Thanks for reading! Happy May Day all!
I am fortunate enough that these are not my circumstances: I am not among those living in poverty. I have benefits above and beyond what many of those with disabilities can expect in their own lives - I live in the US were I can count on some measure of support from my government - in the form of reduced cost/free medical care and the money I get from SSDI (at least for now, we'll see what November brings). But even that is not enough for me to live independently - were it not for my parents, I would have to make the choice every month between food and shelter, not to mention medications, clothing and other necessities of life. There are housing programs in my area, but they are troubled with the same burdens of all other social services programs: long waiting lists, a one-size-fits-all mentality (which almost never fit me), and lack of funding. Either way, without my parents, making it, financially, would be extremely difficult. It's a constant worry, even with them, but I have this cushion here, which allows me to afford things like Internet (yay!) to make my life more comfortable.
But the choice to apply for SSDI, and then following through the long and difficult process is something that most people don't really think about. So I've dug through my journals and come up with two entries on the subject... the first is from August of 2003, when I applied (for the 3rd time) for SSDI, and was feeling, well, you'll see how many different things I was feeling about it:
Nobody ever says "this is what it is like to be 24 and applying for Social Security." well, this is what it's like.
It's like you've failed. Like you're never going to be able to be more - do more - than you are right now. As if all the dreams and goals you have for yourself are as far out of reach as Mercury - and always will be.
It's embarrassing - to have a Master's Degree - to have earned a Master's Degree - and still be incapable of using it. To be filling out form after form after form where you have to clearly and concisely list all of your inadequacies, even the ones you avoid acknowledging to yourself. To say "Yes, I had wanted to be a teacher, responsible for the care and cultivation of young minds, hearts, souls and bodies, but right now I can't even be left alone to get to the bathroom." To be forced to admit - particularly to yourself - just how bad it really is: how many days a week you can't get out of bed, how many times a day you require help, how you can't lift over 5 pounds, how you can't tie your own shoe some days.
It's frustrating. Especially with such a load of 'controversial' diagnoses (CFIDS/FM/etc) to think that after I've bared my worst secrets and groveled for money I'd much rather be busy earning, that they might not believe me, or think that I've exaggerated, or turn me down - again. As if I had no interest in doing more than lying here, pretending to live. As if my sole goal in life was to get other people to support me - so I could live at home with my parents forever, and spend my time watching Law and Order re-runs on TV.
It's like saying "I give up." And this is the hardest one to swallow. Because I don't give up. What I'm really trying to say is "I just can't do it right now, and I need your help," but that's not what it feels like I'm saying. It feels like I did give up, and now have to beg for enough money to live.
It feels helpless, powerless... to wait until some faceless and medically ignorant bureaucrat decides whether or not I'm sick enough to deserve help. I have applied for SSDI twice already, and each time I was denied. A part of me, a not so small part, rejoiced when they said no, although I needed the money and was totally unable to work, because it meant that I wasn't sick enough - I wasn't the hopeless & forever kind of sick.
It feels futile - to know how much of life I am missing out on, and to be unable to do anything about it. What do you do after your doctor - and every other available, knowledgeable doctor - says "we just don't know what else to do... we can't really help you yet." I know that some people lead crusades to help themselves, or the ones they love. I admire them, I do, but I don't have that strength. I just don't. For me, each day is a battle - from breathing, to sleeping, even eating - every.single.thing. is a challenge right now. I honestly can not remember a pain free day - my last pain free day... I don't know when it was. So that's the only battle I'm up to fighting right now - I wish it wasn't. But it is.
It's more of just living in 'until'. Maybe even the ultimate step of living in 'until' because I've made it official: "Until I can care for myself, do for myself, earn for myself, I need this help. I need this money. To live. To be. Please Help."
It's sad.
It's scary.
It's yet another aspect of being ill that I would have rather passed on by, thank you very much.
But right now? It's also necessary - for my survival, for my sanity, for me. So I'm doing it, again, and I'll hope for the best (even if I'll be praying that by the time they decide, I won't need it anymore.)
The second is from January of 2004, when I received my first check (including the back money from when I'd first applied), and you'll see that my feelings about the money are still pretty complicated:
Got my first SSI check today: $3000! The most money I've ever had in my whole life. I've been vacillating all day between being upset and being happy. First I think, "All of this money, and I did nothing to earn it!" Then I think "Hell yes, I earned it: nine years of dealing with a life altering disease. All consuming chronic pain, dozens of doctors and diseases with no names or treatments; all the complications that nobody expected or could explain, all the symptoms that interfere with my every day, my every hope or ambition or dream." So did I earn it? I suspect I did. But it still doesn't feel good, the way I expect a paycheck would feel: Earned free and clear, through doing the job you love (or hate, as the case may be). A good day's pay for a good day's work. Plus, it feels so final, as if there is little hope for change or improvement.
I just don't know what or how to feel. It's very confusing.
I do need the money: even though I'm living at home, off my parents, basically, I need to be able to contribute something. And still, I'm too sick to take this money and actually do anything with it. Even if I have earned it, I can't just spend it: I'm too sick to shop, even. *This is obviously before I got my laptop and a debit card.* This day is just too conflicting... I don't know what to think.
What are my thoughts today, four years later and unfortunately still on SSDI? Still pretty conflicted.
In some ways, it's a lot easier now than it was then: I've since done a lot of thinking about the responsibilities of the government towards it's people and the need for social services, etc. I don't have a lot of questions about whether or not I 'deserve' the money - I pretty much figure I don't 'deserve' my illness either, but if I'm stuck with that, I should ask for the help I need if it's available. I've gotten to the point where I don't always feel as helpless/powerless with my situation, because I have doctors who work with me and friends who listen when I've feeling overwhelmed.
But I'm still sad and upset that I'm not doing what I want to be doing with my life, that it's just not possible to be working (or having a family or traveling or any of the millions of other things I want to do that require more than I have to give). That's not something that goes away. I don't think it should go away, personally, because that would be like giving up: I've adjusted a lot of my dreams to fit me for now: watching the children in my family, helping to care for them as they grow or writing for websites and on this blog because it's something I can do that keeps me connected to my dreams as well as the rest of the world. I may still be living in 'until...', but I've made 'until...' fit me as best as I can.
Anyways, that seems like a very long post, not just about money, but about all of the feelings that come along with asking your government for financial help. I don't know what other peoples' experiences are, but this is is how it felt for me, to be 24 years old and to realize I wasn't going to make it without some financial help. I was lucky enough that it was available to me, I realize now, and the past few years would've been a lot tougher without it. So for today, I'll be grateful, even if I'd still rather be working. I'd still rather be earning my money at a job I love, feeling like I was doing more than making it through the day.
And now I'd like to direct you to the hub of BADD, Diary of A Goldfish, where there's a zillion and one more posts about a zillion and one more topics, all related, in some way to disability. Even if you can't get through them all today (yeah... I tried that last year... it did not work out), bookmark the page and get to them as you can: I know I will be.
Thanks for reading! Happy May Day all!
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