So, one of my biggest problems with this space is that it is both awesome and pressure all at the same time. Good pressure, but still. Hoping to start up the daily blogging thing again come July, if only because it'll give me a reason to keep the door closed and the TV off. But I'm working on some things, some projects, in the meantime. Got stuff brewing. Doing a little bit of non-blog writing every now and then, even. But there's also been a bunch of family stuff (always), and a severe spoon shortage (also always), so I'm only getting through about a third of my to-do list.
Oh, and that's not even mentioning the doctor drama, wherein I (yet again) get dumped by my primary care doctor and have to scramble to find a (MassHealth accepting) replacement. (Which I have yet to do: joy of joys!) And how that screws up every single other doctor and specialist I have to see, all because, well - she don't know what to do with me anymore, and she's sick of trying and having more things go wrong? Guess who else feels exactly that same way? But doesn't have the luxury of bailing? This girl, right here! Although her official complaint was that Zack was taking over more and more of my care, and 'he's not in our network, so I don't get his notes right away and that's not a viable way to provide care.' So... because your computers don't speak the same exact language and it takes a couple of weeks for things to get filtered through to you...? Mmhmm: Not Buying It.
I knew it was coming - I am not a debutante dumpee, after all - a few months back when she started talking about how the hospital was consolidating referrals and maybe I'd have to start switching some of my specialists over to new ones. Which would mean finding at least six new specialists and starting from scratch with all of them, ON TOP OF leaving Zach, which I am just unwilling to do, instead of just, say finding a new primary care doc. She was quick to point out that it would be easier on me to find a new PCP, probably, in long run, didn't I think? Well, actually, I think the whole system is beyond asinine, because the person I see the most can't be my 'primary care' and everybody else gets pissy over the fact that I want to see him so often, even though he's the only one who, you know, actually tries to help me by doing things?
As opposed to the lot of you who say things like "It's chronic illness and you'll just have to learn to adapt better" or "If you lose a couple of pounds that might go a long way" (it did not, by the way: I have felt no better at 150 than I did at 200, I was considerable worse at 165 than I was at either of those, so .... shove it?) and "with all these new problems cropping up, it's hard to know where to start with you, so I'm not comfortable doing anything." (Seriously: that last is an exact quote. Too. Many. Things. Don't. Want. To. Help. With. Any. Of. Them. Screw You.)
So, I've got one more appt with her - my soon-to-be ex-PCP - next week, during which she will help with exactly zero things, probably google half of the things I tell her, and randomly search the network for test results that should have been back weeks ago, and then I have to hit the phones again. For the ... third time in under five years? With no guarantees that I can find anybody (in our state's primary care drought) that a) takes my non-insurance, b) understands about chronic illnesses in general, and mine specifically, c) understands that I need to see specialists pretty often and d) will not put up a fuss about Zach and his experiments, because I am not willing to stop experimenting.
All of which makes me want to spend my time digging out my West Wing DVDs just so I can watch Sam & Toby and Josh and pretend I don't hate the world for a little while.
Showing posts with label Head meet desk. Show all posts
Showing posts with label Head meet desk. Show all posts
Thursday, June 20, 2013
Friday, May 11, 2012
That's ok: I don't need to shower
So I just had my reevaluation for my participation in our state's Personal Care Assistant program - the program I use to pay my mom for doing things like buying groceries and helping me shower. I've been in the program for about 6 years or so, and every time the people come out - and it's never the same people - they tell me something different. At my initial intake (done 3 agencies ago), the nurse and the case manager came together, sat with me and basically explained how I didn't qualify for 3/4 of the stuff I really need help with - like cooking and cleaning and whatnot - because I live at home, and "the other people you live with are expected to pick up those tasks." That was news to both them and me, I assure you. And considering that one of the stated goals of the program is to "help clients live as independent a life as possible", kind of contrary to what we were supposed to be accomplishing. But they were right - six years later, I still am not technically approved for the majority of what my actual needs are: someone to dust when I'm not around (bc of the asthma); somebody to bring groceries into the house and maybe get them made into a meal once in a while; all the toting and lugging of me and my chair to various non-medical appointments, etc.
We filled out the paper work, with our best case scenarios, and nobody was surprised when the decision came back from Mass Health approved for significantly less hours than were necessary. Significantly less hours than a qualified nurse and my own doctor considered necessary, I might add. But I took what I could get, because, especially at that point, any financial help was better than the nothing I was getting. The kicker, in regards to my hours, is that I was approved for 30 minutes of "medical related" travel time A WEEK.
30 minutes of medical related travel time happens at least 3 times a week, and that doesn't even include the actual appointments.
At another evaluation, the nurse told me that I qualified for an additional stipend, because of a new part of the program, and that she would put in the paperwork for me. She didn't, and by the time I found out that she hadn't, the state had suspended that program, and I could no longer apply. Last year, the nurse told me I was approved for two years, and wouldn't need a new evaluation until 2013. I've had two people come out since then, both for evaluations.
Today's nurse went out of her way to tell me that Mass Health is dramatically cutting back on hours, to the point where she's had to tell clients that their hours were cut back because "risk of falls is anticipatory language, and Mass Health doesn't pay for what we might anticipate our problems to be, but what they actually are." Gee, there's great budget reducing deduction, state agency --> cut preemptive funds to protect people from falling, client falls and is badly injured, now needs MORE services then ever (so you spend even more money than you would have originally)! Ignoring the fact that the client is a real person, who will have additional pain and suffering because of the fall (and I'm only ignoring it because I know they are), what kind of logistical financial sense does that equation make?? True facts: I hated math in school, but I still managed to pass, so I know that it makes zero actual sense!
Anyways, she gave me the spiel about cutbacks and then said "So I hope I don't have to make any changes in your eval, because the only clients that I've had them deny are ones that I've asked for adjustments on. So I try not to rock the boat." She said that before we had started going over what help I need and when I need it, she said it at the bottom of every page, and she said it again as I was signing my (blank) form, so what are the chances that I told her that I felt like I needed more hours? Even though I really do need more hours, and need adjustments on the aspects of daily living portion that are still wrong from five years ago?
I don't think you even have had to pass math to guess, but the chances of that are also zero!
There's so much talk in the air lately about benefit scroungers & welfare layabouts - people who are scamming the system and cheating 'the tax payers' out of their hard earned money. There's a lot of talk about cutbacks to essential social services and financial supportive programs. You can't read any sort of reliable news source that isn't telling you about how the social safety net is being dismantled in Country A or Country B.
And if you read through any of the blogs from last week's brilliant Blogging Against Disabilism Day, then you probably saw how much these cutbacks are affecting the lives of very real people. Here's just one more subtle example: I wasn't denied any services by the program I'm in, or by Mass Health, or even by the agency that administers my participation in the program. But I was told, again and again, that to ask for the amount of help I truly need could leave me without the help I already have. That to ask for more is to put it all at risk, and that was enough. And it wasn't the nurse's fault - she was honestly trying to be helpful, because she knew I needed services and didn't want to see me without anything. But when the climate is "our state is cutting money where ever it can find it, and if that means a person with disabilities falls (or goes without meals or showers) because of it, oh well: unintended byproduct of cost-cutting Necessary Measures!", then people with disabilities know that they have to be extra cautious, to settle for what they have, even when it's not good enough.
But no, those commenters who were sure that there "isn't STILL discrimination against the disabled": I'm sure you're right. I'm just being overly sensitive.
We filled out the paper work, with our best case scenarios, and nobody was surprised when the decision came back from Mass Health approved for significantly less hours than were necessary. Significantly less hours than a qualified nurse and my own doctor considered necessary, I might add. But I took what I could get, because, especially at that point, any financial help was better than the nothing I was getting. The kicker, in regards to my hours, is that I was approved for 30 minutes of "medical related" travel time A WEEK.
30 minutes of medical related travel time happens at least 3 times a week, and that doesn't even include the actual appointments.
At another evaluation, the nurse told me that I qualified for an additional stipend, because of a new part of the program, and that she would put in the paperwork for me. She didn't, and by the time I found out that she hadn't, the state had suspended that program, and I could no longer apply. Last year, the nurse told me I was approved for two years, and wouldn't need a new evaluation until 2013. I've had two people come out since then, both for evaluations.
Today's nurse went out of her way to tell me that Mass Health is dramatically cutting back on hours, to the point where she's had to tell clients that their hours were cut back because "risk of falls is anticipatory language, and Mass Health doesn't pay for what we might anticipate our problems to be, but what they actually are." Gee, there's great budget reducing deduction, state agency --> cut preemptive funds to protect people from falling, client falls and is badly injured, now needs MORE services then ever (so you spend even more money than you would have originally)! Ignoring the fact that the client is a real person, who will have additional pain and suffering because of the fall (and I'm only ignoring it because I know they are), what kind of logistical financial sense does that equation make?? True facts: I hated math in school, but I still managed to pass, so I know that it makes zero actual sense!
Anyways, she gave me the spiel about cutbacks and then said "So I hope I don't have to make any changes in your eval, because the only clients that I've had them deny are ones that I've asked for adjustments on. So I try not to rock the boat." She said that before we had started going over what help I need and when I need it, she said it at the bottom of every page, and she said it again as I was signing my (blank) form, so what are the chances that I told her that I felt like I needed more hours? Even though I really do need more hours, and need adjustments on the aspects of daily living portion that are still wrong from five years ago?
I don't think you even have had to pass math to guess, but the chances of that are also zero!
There's so much talk in the air lately about benefit scroungers & welfare layabouts - people who are scamming the system and cheating 'the tax payers' out of their hard earned money. There's a lot of talk about cutbacks to essential social services and financial supportive programs. You can't read any sort of reliable news source that isn't telling you about how the social safety net is being dismantled in Country A or Country B.
And if you read through any of the blogs from last week's brilliant Blogging Against Disabilism Day, then you probably saw how much these cutbacks are affecting the lives of very real people. Here's just one more subtle example: I wasn't denied any services by the program I'm in, or by Mass Health, or even by the agency that administers my participation in the program. But I was told, again and again, that to ask for the amount of help I truly need could leave me without the help I already have. That to ask for more is to put it all at risk, and that was enough. And it wasn't the nurse's fault - she was honestly trying to be helpful, because she knew I needed services and didn't want to see me without anything. But when the climate is "our state is cutting money where ever it can find it, and if that means a person with disabilities falls (or goes without meals or showers) because of it, oh well: unintended byproduct of cost-cutting Necessary Measures!", then people with disabilities know that they have to be extra cautious, to settle for what they have, even when it's not good enough.
But no, those commenters who were sure that there "isn't STILL discrimination against the disabled": I'm sure you're right. I'm just being overly sensitive.
Friday, January 20, 2012
In the ball pit
I do this thing where I start thinking - really thinking - about something that's important: Have you noticed this about yourself? Is there a reason why you have to run your mouth like that/act so awkward around new people/ be unbelievably cranky for no good reason? And as soon as the truth about the thing starts rushing at me - as soon as I'm starting to get to the meat of the issue, or when it starts to sort of click in my head that this is not a unique occurrence, that I sometimes act like this and maybe it is a pattern... well, when the truth starts rushing at me, I start rushing away. Is there anybody who needs tending or talking to, or playing with? Isn't there a show on right now that I can escape into, be mindless with? Isn't there a book I could read that would take me anywhere but here, facing the truth? It's such an uncomfortable feeling, this realizing things about yourself, and I would do just about anything to avoid it, I think.
When it does come, and I have seen the whole, frustrating, ill fitting truth about myself, it sticks in my brain: a large scaly burr just big enough and irritating enough to block out anything else. I have no other qualities except this uncomfortable truth - I am no longer a good person, a caring sister, a hard worker - I am only an inveterate gossip, a gigantic fraud, a loathsome individual who feels lonely until she's with people and then wants nothing more than to be left alone. Even though I know that this is not true - that all the good things I am or do are not obliterated by some newfound/newly understood flaw in my character - it is how it feels, and sometimes how it feels is how it is.
I have recently come to quite a few uncomfortable realizations about myself, and trying to integrate those things - a certain pettiness here, a confounding inability stick to the straight facts there - into my vision of who I am is proving more difficult than I'd have guessed. I have always known that I wasn't perfect ~ contrary to what others may think, I am well aware that my goody-two shoes image is just something other people see me as - I have never seen myself as such, and wouldn't really care to. But these inconsistencies in my character - the difference between who I want myself to be and who I really am, these are things I want to fix, to change. And that means recognizing them first, figuring out how deep they run and (maybe) where they come from, and how to stop doing them. It's a lot of heavy mental lifting, and, for a person who has limited reserves of any kind of energy - physical, mental, emotional - it certainly seems Sisyphean.
So I keep looking for low energy escapes - can I ever get my Google Reader below a thousand again? Is Reddit being entertaining or insulting today? Is there any way I can get my uncle to have a conversation with people so that they don't think he's an ogre? Let me organize every photo you've ever taken in your whole life! - and then condemning myself for needing these escape routes. It feels like I'm stumbling around kicking at little pebbles, all the while trying to avoid all the heavy boulders I know I have to move if I want to move forward, but just can't even look at yet.
It feels that way about everything - about all the work I have to do to manage my illnesses (and the question of when I decided that just 'managing' is enough for me), about all the things in my own behavior that I'd like to change; about all the topics in my family that need addressing, and all the ways we find of not addressing them; about not making time for friends and then wondering why they aren't making time for me; about the world as a whole and all the things spinning out of control in it. It just feels like there's too many important things that should get looked at, poked at, lifted up and examined, fixed, and I don't want to touch a single one of them.
A perfect example in the physical world is that my space is still not undecorated from Christmas - oh, the actual decorations are down, but the furniture is still all in the wrong places for every day living. Thus making it more difficult to do things like get towels, because we moved the cart that holds the towels behind the chair, so you have to climb over the chair to get ready to take a shower. It's little ridiculous things like that, but also huge life changing things like deciding to call the PT again, and see where that takes me, or actually changing my diet enough to prevent this diabetes thing from happening - and I just don't want to face any of it at all.
And here I write the necessary caveats that "we've all been sick since Christmas! - and I mean sick sick, like the flu that won't die sick" and "I've just spent two months caring for a wonderful lady, whose head is harder than the stairs she fell down!" and "blah blah blah Chronic Illness, you idiot!" but all of that - while true and real and just so much - doesn't feel like enough of a reason to let everything else pass me by. I never feel like I am juggling half of the balls I need to juggle, there's just me, standing with maybe the three or four largest, most fragile balls, throwing them up and catching them (sometimes by the skin of my teeth, but still, catching them), and all the while, the floor around me is littered with a million other smaller balls.... It's basically me, standing up to my waist in the ball pit of Chuck E Cheese, trying to catch all these biggest balls, but knowing I've let a thousand more go. And not knowing which of those thousand was the next most important - the one that needed me now, and I won't get to it for another three weeks.
I don't know what to do about all that - how to climb out of the ball pit, or juggle better, or even begin identifying the colors of all the stupid things I'm standing in. I know this feeling will pass, or fade, because it has in the past, but it never goes away... I'm always fumbling something, and I wish I knew how to stop.
When it does come, and I have seen the whole, frustrating, ill fitting truth about myself, it sticks in my brain: a large scaly burr just big enough and irritating enough to block out anything else. I have no other qualities except this uncomfortable truth - I am no longer a good person, a caring sister, a hard worker - I am only an inveterate gossip, a gigantic fraud, a loathsome individual who feels lonely until she's with people and then wants nothing more than to be left alone. Even though I know that this is not true - that all the good things I am or do are not obliterated by some newfound/newly understood flaw in my character - it is how it feels, and sometimes how it feels is how it is.
I have recently come to quite a few uncomfortable realizations about myself, and trying to integrate those things - a certain pettiness here, a confounding inability stick to the straight facts there - into my vision of who I am is proving more difficult than I'd have guessed. I have always known that I wasn't perfect ~ contrary to what others may think, I am well aware that my goody-two shoes image is just something other people see me as - I have never seen myself as such, and wouldn't really care to. But these inconsistencies in my character - the difference between who I want myself to be and who I really am, these are things I want to fix, to change. And that means recognizing them first, figuring out how deep they run and (maybe) where they come from, and how to stop doing them. It's a lot of heavy mental lifting, and, for a person who has limited reserves of any kind of energy - physical, mental, emotional - it certainly seems Sisyphean.
So I keep looking for low energy escapes - can I ever get my Google Reader below a thousand again? Is Reddit being entertaining or insulting today? Is there any way I can get my uncle to have a conversation with people so that they don't think he's an ogre? Let me organize every photo you've ever taken in your whole life! - and then condemning myself for needing these escape routes. It feels like I'm stumbling around kicking at little pebbles, all the while trying to avoid all the heavy boulders I know I have to move if I want to move forward, but just can't even look at yet.
It feels that way about everything - about all the work I have to do to manage my illnesses (and the question of when I decided that just 'managing' is enough for me), about all the things in my own behavior that I'd like to change; about all the topics in my family that need addressing, and all the ways we find of not addressing them; about not making time for friends and then wondering why they aren't making time for me; about the world as a whole and all the things spinning out of control in it. It just feels like there's too many important things that should get looked at, poked at, lifted up and examined, fixed, and I don't want to touch a single one of them.
A perfect example in the physical world is that my space is still not undecorated from Christmas - oh, the actual decorations are down, but the furniture is still all in the wrong places for every day living. Thus making it more difficult to do things like get towels, because we moved the cart that holds the towels behind the chair, so you have to climb over the chair to get ready to take a shower. It's little ridiculous things like that, but also huge life changing things like deciding to call the PT again, and see where that takes me, or actually changing my diet enough to prevent this diabetes thing from happening - and I just don't want to face any of it at all.
And here I write the necessary caveats that "we've all been sick since Christmas! - and I mean sick sick, like the flu that won't die sick" and "I've just spent two months caring for a wonderful lady, whose head is harder than the stairs she fell down!" and "blah blah blah Chronic Illness, you idiot!" but all of that - while true and real and just so much - doesn't feel like enough of a reason to let everything else pass me by. I never feel like I am juggling half of the balls I need to juggle, there's just me, standing with maybe the three or four largest, most fragile balls, throwing them up and catching them (sometimes by the skin of my teeth, but still, catching them), and all the while, the floor around me is littered with a million other smaller balls.... It's basically me, standing up to my waist in the ball pit of Chuck E Cheese, trying to catch all these biggest balls, but knowing I've let a thousand more go. And not knowing which of those thousand was the next most important - the one that needed me now, and I won't get to it for another three weeks.
I don't know what to do about all that - how to climb out of the ball pit, or juggle better, or even begin identifying the colors of all the stupid things I'm standing in. I know this feeling will pass, or fade, because it has in the past, but it never goes away... I'm always fumbling something, and I wish I knew how to stop.
Thursday, July 07, 2011
Topics, topics, who's got a topic?
I could write about how hot it is here, and how everyone else in my family would like that to mean all air conditioning all the time, but the stale smell of the air conditioning combined with general cooking smells that will not dissipate, plus the fact that air conditioning makes me frozen, added to the fact that parts of our house get a really good breeze makes me less than amenable to this plan. Which earns me a lot of dirty looks, I suppose, but it turns out I give just as many, when I come out of my non-air conditioned room to find that the rest of the house is iceberg cold. It's a game we will continue to play all summer, unfortunately, because the heat doesn't really bother me, and it seems to really bother everybody else. Humidity bothers me, asthma wise, and I have no choice then but to fall back on the A/C. Heat itself, however, because I am very low on the physical activity meter (& also a lot lower in the room physically - heat rises), doesn't mean all that much. Sun, humidity, all of the main accomplices of heat - we are enemies, but heat & I are kind of buddies.
(I recently told Zack that I have experienced a dramatic increase in my levels of sweating - "Usually, aside for fevers, I am not a sweat-er" I told him. "No: You're more of a jacket" was his completely straight-faced response. Zack is so pathetic, he can't help but be adorable, sometimes. Even if I have now been waiting four days for his substitute nurse to call me back - I don't like that substitute nurse very much.)
What else is going on here - OH YEAH - a big huge shower. Even though it is not really all that big or huge; it just feels like it because there are a lot of details and secrets and planning and crafts and last minute things that I hate, but you can't cook for a party three weeks beforehand, unfortunately. That's this weekend, in case you were wondering. I have no doubts that it will turn out to be lovely, but the anxiety of getting there reminds me that I would - despite awesome organizational and DIY-skills - make a poor wedding planner.
I always get nervous before parties, and can't really nail down what the anxiety is about (aside from things just completely falling apart). I know I am not truly anti-social, but there is a huge part of me that is introverted, and definitely socially awkward. I long to be one of those gracious hostesses who doesn't search for the right thing to say that makes people feel welcome, or who knows how to blend different groups of people together seamlessly, but longing for it unfortunately does not make it so.
In response to a previous query, I thought I'd tell you that we've decided on two games for the shower, neither of which require much of a spotlight or too much intense participation (which I am not sure we can count on from our guests) - a "How Old Am I?" guessing game, with pictures of the bride at various ages and stages, and a "Design a Wedding Cake" coloring thing that has so far only been hilarious in the number of ways my sister and I have miscommunicated about it.
Originally, I'd read something about creating cakes out of Play Doh, which I thought sounded like fun and was different enough that not everybody would have played it a million times already (toilet paper dress making, I'm looking at you!) We decided to scale it back a little, I think mostly because not everybody here is a big Play Doh fan (boo hiss: Play Doh is awesome!), and do models instead. I told my sister that there were cake templates that we could use, and then people could decorate their own and have SisterCh judge which was best. Now, what I was talking about was doing little Styrofoam models of cake - actually called 'cake templates' (the kind people use when they're learning to frost cakes) with real frosting and what not - still kind of messy, but silly enough that people were having fun. But what SisterJ (the matron (ha!) of honor) heard was templates - like a paper drawing of a cake, that we would then have people decorate. So I went out and bought 20 pastry bags, and the look she gave me when I took them out of the bag was as if I told her I had decided that I would wear my underwear on the outside of my clothing from now on. In the interest of space and cleanliness, we decided to go with the coloring page version of the game, and I'm hoping it will still have enough silliness in it to make it fun and worthwhile.
I'm off to finish printing the pictures for the How Old Am I game, as we speak, so wish me luck. Let's hope whatever any of us wind up doing this weekend will be fun and fruitful!
(I recently told Zack that I have experienced a dramatic increase in my levels of sweating - "Usually, aside for fevers, I am not a sweat-er" I told him. "No: You're more of a jacket" was his completely straight-faced response. Zack is so pathetic, he can't help but be adorable, sometimes. Even if I have now been waiting four days for his substitute nurse to call me back - I don't like that substitute nurse very much.)
What else is going on here - OH YEAH - a big huge shower. Even though it is not really all that big or huge; it just feels like it because there are a lot of details and secrets and planning and crafts and last minute things that I hate, but you can't cook for a party three weeks beforehand, unfortunately. That's this weekend, in case you were wondering. I have no doubts that it will turn out to be lovely, but the anxiety of getting there reminds me that I would - despite awesome organizational and DIY-skills - make a poor wedding planner.
I always get nervous before parties, and can't really nail down what the anxiety is about (aside from things just completely falling apart). I know I am not truly anti-social, but there is a huge part of me that is introverted, and definitely socially awkward. I long to be one of those gracious hostesses who doesn't search for the right thing to say that makes people feel welcome, or who knows how to blend different groups of people together seamlessly, but longing for it unfortunately does not make it so.
In response to a previous query, I thought I'd tell you that we've decided on two games for the shower, neither of which require much of a spotlight or too much intense participation (which I am not sure we can count on from our guests) - a "How Old Am I?" guessing game, with pictures of the bride at various ages and stages, and a "Design a Wedding Cake" coloring thing that has so far only been hilarious in the number of ways my sister and I have miscommunicated about it.
Originally, I'd read something about creating cakes out of Play Doh, which I thought sounded like fun and was different enough that not everybody would have played it a million times already (toilet paper dress making, I'm looking at you!) We decided to scale it back a little, I think mostly because not everybody here is a big Play Doh fan (boo hiss: Play Doh is awesome!), and do models instead. I told my sister that there were cake templates that we could use, and then people could decorate their own and have SisterCh judge which was best. Now, what I was talking about was doing little Styrofoam models of cake - actually called 'cake templates' (the kind people use when they're learning to frost cakes) with real frosting and what not - still kind of messy, but silly enough that people were having fun. But what SisterJ (the matron (ha!) of honor) heard was templates - like a paper drawing of a cake, that we would then have people decorate. So I went out and bought 20 pastry bags, and the look she gave me when I took them out of the bag was as if I told her I had decided that I would wear my underwear on the outside of my clothing from now on. In the interest of space and cleanliness, we decided to go with the coloring page version of the game, and I'm hoping it will still have enough silliness in it to make it fun and worthwhile.
I'm off to finish printing the pictures for the How Old Am I game, as we speak, so wish me luck. Let's hope whatever any of us wind up doing this weekend will be fun and fruitful!
Saturday, July 24, 2010
Let's talk a little
My mind lately seems to be going at about triple it's normal speed. Frantic, speed-brain, for some reason. It's strange, really, because things are relatively calm (or what passes for it in my family anyways), and yet I can't get my stupid brain to slow down long enough for me to grip on to anything. Or - alternately - I get hold of something and just can't let it go.
July started off OK - I even took the month off from doctors, because all the news was bad and painful and just more of the same and I couldn't think about it anymore. But of course it hasn't stopped me from thinking about it: At the very least though, by taking the time off, I couldn't be poked or prodded or asked stupid questions about it anymore.
And then my brother and sister-in-law took the kids to the Cape for a week, and were too lazy to drive them up for a few days before that, and all of the "good summer fun with the kids" I had planned to cram into my month (and my mind) instead turned into "days of doing nothing but sitting around thinking about my life." These days were not nearly as much fun as the ones I had anticipated. Left with entirely too much time to ponder at least two major family situations (one of which has blown over and another that continues on without any solution to be seen), my own non-improving health and relationships situations, and the fact that yesterday was the anniversary of my father's death (not to mention a very rude person who treated it as if, because my father and I did not get along, this anniversary should be pretty meaningless to me); it's been an unexpectedly emotional time. There's just all this stuff, and I feel like I need energy to sift through it, and I haven't got the energy - emotional or physical - that god gave a gnat, so it's all heavy lifting.
It's all heavy lifting.
And I don't, as usual, realize how heavy, really, until I sit here with my fingers tapping away trying to explain why I haven't posted anything lately, or taken pictures of the gorgeous kids or why I've signed up for at least three projects this summer that I haven't even begun to consider, let alone start. Until I sit here and let my fingers start talking, I let my brain rev itself up into a frenzy, and don't realize that not saying anything, not posting anything is part of the trouble.
So here's some more of what I've been toting around, this week particularly -
We've been attempting to clean out Nana's storage: Yes, 2 years is a long time to pay storage fees, but when you roll up that door and the smell - her smell - hits you, I would gladly pay for another two years just to not have to sit there and sift through the contents of her life while my uncle - who is clueless - natters on about "Goodwill" and "Junk" and my mother and aunt try to move as quickly as possible so we can just leave already, and all I want to do is sit there with a box of stuff opened around me and absorb it into my skin. I've been taking pictures and saving things from the scrap bin; trying to hold all my emotions in in case my mom needs to let hers out.
I'm in that tiny little hallway, with it's concrete floors and neon orange doors, watching as box after box after box comes out. When my uncle pops out one of the windows on my grandmother's dollhouse (they're plastic and pop back in), I bite my tongue and control my need to scream about how important it is to fix it Right Away! I watch my aunt take a box of china she shouldn't be lifting and wrap it up so clumsily that it's sure to be in pieces the next time we open the box, but I don't say anything: I just wait till she turns around and slide the box in my direction, re-wrap it when she heads out for a cigarette. When my mom opens a box with baby shoes in it - shoes that Nana had lovingly wrapped in tissue paper, for her 'baby' who died twenty years before she did - mom doesn't cry, so I don't cry.
See, I know that this stuff is not my Nana, and that - in all honesty - she couldn't really have cared about the majority of it: glasses that lived in cabinets, tea sets made of gold that never made it to the table, knickknacks from places she never traveled to, lots of things that said 'grandma' because stuff that said 'nana' was so much harder to find. She wouldn't mind if we tossed all that out, would actually have done it herself if she'd have thought about us having to do it now.
But I also know that there are memories to be found here - not just my memories, but everyones - and so I feel like I have to safeguard them - for my mom, who isn't thinking anything except "get me out of here"; for all the grandchildren who can't be in that dark little hallway with me, and for all the great grandchildren - here now and to come - who never got a chance to know just how awesome a lady they missed out on.
So I sit there, allergies acting all renegade and body too sore to take breaths, it seems, setting aside a porcelain cat for one sister, a rogue leprechaun for my brother, a picture of himself that my cousin has probably never seen. Some of this stuff means something to me, some of it doesn't but I'm determined not to let the "one thing" that somebody would have wanted get tossed in a box for Goodwill. I feel like the only person there capable of remembering that this isn't just stuff, it has value to someone, and they should at least have the chance to say "No, you can toss that" or "Oh my god, I totally remember this!" So I click the shutter on my camera again and again and again, hoping that I'm capturing the something somebody wants, before I repack the boxes and watch my uncle roll his eyes again.
It's just heavy lifting.
And I try to be gentle with myself, try to say: Even though it doesn't seem like right now is a busy time, you are doing a lot of work. But it doesn't always sink in, because part of my heavy lifting is the way I think about myself, the way I don't give myself credit for the things that I do, the way I beat up on myself for all the things I don't do. It's a tricky line, I think - to hold yourself accountable without tearing yourself apart. (At least it is for me.)
I read, somewhere, in a recent blog post of somebody's, that one of the rules to remember in blogging is that your blog is not your best friend. If you feel like you need to vent, pick up the phone, don't complain to your audience or they'll stop coming back. I think that's probably good advice, but I don't know that I can follow it. I appreciate it, honestly, with my whole heart, that you people come back time and again to read things like this, where my head is a spinning top and my heart feels cracked open.
I won't say that I don't have people in my life who would listen, if I started talking, because I do, but it's different to write it here, freer somehow. Saying what I need to say to get my head back on straight is a large part of what's kept me writing for so long at this blog, and - while it may be the reason I don't have a zillion followers - it's also part of the reason that I cherish the followers I do have.
So, now that I feel somewhat normal again, what's going on with you all? I know somebody has a new job (YAY Ms J!!!) and other people are dealing with their own brands of chaos (Hope the bed rest is going well, Laurie!). I hope that you're all enjoying your weekend, come what may, and I promise to write again soon. (And less emotionally jumbled, hopefully.)
July started off OK - I even took the month off from doctors, because all the news was bad and painful and just more of the same and I couldn't think about it anymore. But of course it hasn't stopped me from thinking about it: At the very least though, by taking the time off, I couldn't be poked or prodded or asked stupid questions about it anymore.
And then my brother and sister-in-law took the kids to the Cape for a week, and were too lazy to drive them up for a few days before that, and all of the "good summer fun with the kids" I had planned to cram into my month (and my mind) instead turned into "days of doing nothing but sitting around thinking about my life." These days were not nearly as much fun as the ones I had anticipated. Left with entirely too much time to ponder at least two major family situations (one of which has blown over and another that continues on without any solution to be seen), my own non-improving health and relationships situations, and the fact that yesterday was the anniversary of my father's death (not to mention a very rude person who treated it as if, because my father and I did not get along, this anniversary should be pretty meaningless to me); it's been an unexpectedly emotional time. There's just all this stuff, and I feel like I need energy to sift through it, and I haven't got the energy - emotional or physical - that god gave a gnat, so it's all heavy lifting.
It's all heavy lifting.
And I don't, as usual, realize how heavy, really, until I sit here with my fingers tapping away trying to explain why I haven't posted anything lately, or taken pictures of the gorgeous kids or why I've signed up for at least three projects this summer that I haven't even begun to consider, let alone start. Until I sit here and let my fingers start talking, I let my brain rev itself up into a frenzy, and don't realize that not saying anything, not posting anything is part of the trouble.
So here's some more of what I've been toting around, this week particularly -
We've been attempting to clean out Nana's storage: Yes, 2 years is a long time to pay storage fees, but when you roll up that door and the smell - her smell - hits you, I would gladly pay for another two years just to not have to sit there and sift through the contents of her life while my uncle - who is clueless - natters on about "Goodwill" and "Junk" and my mother and aunt try to move as quickly as possible so we can just leave already, and all I want to do is sit there with a box of stuff opened around me and absorb it into my skin. I've been taking pictures and saving things from the scrap bin; trying to hold all my emotions in in case my mom needs to let hers out.
I'm in that tiny little hallway, with it's concrete floors and neon orange doors, watching as box after box after box comes out. When my uncle pops out one of the windows on my grandmother's dollhouse (they're plastic and pop back in), I bite my tongue and control my need to scream about how important it is to fix it Right Away! I watch my aunt take a box of china she shouldn't be lifting and wrap it up so clumsily that it's sure to be in pieces the next time we open the box, but I don't say anything: I just wait till she turns around and slide the box in my direction, re-wrap it when she heads out for a cigarette. When my mom opens a box with baby shoes in it - shoes that Nana had lovingly wrapped in tissue paper, for her 'baby' who died twenty years before she did - mom doesn't cry, so I don't cry.
See, I know that this stuff is not my Nana, and that - in all honesty - she couldn't really have cared about the majority of it: glasses that lived in cabinets, tea sets made of gold that never made it to the table, knickknacks from places she never traveled to, lots of things that said 'grandma' because stuff that said 'nana' was so much harder to find. She wouldn't mind if we tossed all that out, would actually have done it herself if she'd have thought about us having to do it now.
But I also know that there are memories to be found here - not just my memories, but everyones - and so I feel like I have to safeguard them - for my mom, who isn't thinking anything except "get me out of here"; for all the grandchildren who can't be in that dark little hallway with me, and for all the great grandchildren - here now and to come - who never got a chance to know just how awesome a lady they missed out on.
So I sit there, allergies acting all renegade and body too sore to take breaths, it seems, setting aside a porcelain cat for one sister, a rogue leprechaun for my brother, a picture of himself that my cousin has probably never seen. Some of this stuff means something to me, some of it doesn't but I'm determined not to let the "one thing" that somebody would have wanted get tossed in a box for Goodwill. I feel like the only person there capable of remembering that this isn't just stuff, it has value to someone, and they should at least have the chance to say "No, you can toss that" or "Oh my god, I totally remember this!" So I click the shutter on my camera again and again and again, hoping that I'm capturing the something somebody wants, before I repack the boxes and watch my uncle roll his eyes again.
It's just heavy lifting.
And I try to be gentle with myself, try to say: Even though it doesn't seem like right now is a busy time, you are doing a lot of work. But it doesn't always sink in, because part of my heavy lifting is the way I think about myself, the way I don't give myself credit for the things that I do, the way I beat up on myself for all the things I don't do. It's a tricky line, I think - to hold yourself accountable without tearing yourself apart. (At least it is for me.)
I read, somewhere, in a recent blog post of somebody's, that one of the rules to remember in blogging is that your blog is not your best friend. If you feel like you need to vent, pick up the phone, don't complain to your audience or they'll stop coming back. I think that's probably good advice, but I don't know that I can follow it. I appreciate it, honestly, with my whole heart, that you people come back time and again to read things like this, where my head is a spinning top and my heart feels cracked open.
I won't say that I don't have people in my life who would listen, if I started talking, because I do, but it's different to write it here, freer somehow. Saying what I need to say to get my head back on straight is a large part of what's kept me writing for so long at this blog, and - while it may be the reason I don't have a zillion followers - it's also part of the reason that I cherish the followers I do have.
So, now that I feel somewhat normal again, what's going on with you all? I know somebody has a new job (YAY Ms J!!!) and other people are dealing with their own brands of chaos (Hope the bed rest is going well, Laurie!). I hope that you're all enjoying your weekend, come what may, and I promise to write again soon. (And less emotionally jumbled, hopefully.)
Tuesday, April 13, 2010
I did mention, right,
that I hate doctors?
So, you may remember that I was all on board train "face surgery" as much as any person could be anyways, when last we discussed it. Well, today I had some (unrelated) blood tests, and my liver came back SNAFU. My liver is like that - sometimes, it is fine and dandy, other times it grows things named after cartoon characters from the 1980s (Looking back, I realize that I was not actually writing this blog way back when I developed my hemangioma, which is pronounced exactly as it is spelled: He-Man-Ge-Oma, but that's what I am referring to). It has been labeled fatty (which hurt both our feelings), been ruled out as a donor organ, put on (and taken off of) various medications, and sends sudden, terrifyingly high bad cholesterol numbers to scare lab techs into making the doctor call me back on the very same day. Of course, the fact that those cholesterol numbers also drop dramatically every other time doesn't seem to bother them, but for right now, I'm supposed to be impressed that they are "startlingly high" for someone so young. (I'm not impressed, or bothered, and will just wait till next time before I panic, thank you very much.)
But aside from the cholesterol, my liver enzymes are elevated, which means ... what? Something. Maybe. Nothing? They are Not Sure. They want More Tests. They are Reviewing My Records. - Or, they will be doing all of that, they promise, when they return to the office in a Week and a Half. :sigh:
Which means the sinus surgery may have to be postponed, which I am not pleased about because, well, now that I am on board the train, I would like it to leave as soon as possible, so that I can get off of it as soon as possible. I do not like waiting. I do not like new problems to pop-up when I do not have the energy to deal with them. I do not need some new Skeletor to face, and I'd rather not have to deal with a recurrence of his arch-enemy either (Because, although all that that required was monitoring, liver ultrasounds - any ultrasounds - and me of the FM pain/tender body parts, do not get along well).
I'm just having the kind of the week where things seem to be crumbling/sucking no matter what I do... things that start off with the best of intentions are suddenly horrible and poisonous, and I have no idea where they went wrong or how to fix them.
So when the doctor - my primary care, whom I do not have much faith in at all - called and said "This is a problem. But I'm not going to be here to help you figure it out for two weeks", I wanted to dissolve into a puddle. I mean, I know, in my head, that there are things I can do - like calling the surgeon or Zack in that time, just so I know what their take on the whole thing is - but right now, all I want is for all the complications to Go Away.
Or, maybe I could go away: Where is Swift Wind when you needherhim?
(Did you know he was a he? I didn't.)
So, you may remember that I was all on board train "face surgery" as much as any person could be anyways, when last we discussed it. Well, today I had some (unrelated) blood tests, and my liver came back SNAFU. My liver is like that - sometimes, it is fine and dandy, other times it grows things named after cartoon characters from the 1980s (Looking back, I realize that I was not actually writing this blog way back when I developed my hemangioma, which is pronounced exactly as it is spelled: He-Man-Ge-Oma, but that's what I am referring to). It has been labeled fatty (which hurt both our feelings), been ruled out as a donor organ, put on (and taken off of) various medications, and sends sudden, terrifyingly high bad cholesterol numbers to scare lab techs into making the doctor call me back on the very same day. Of course, the fact that those cholesterol numbers also drop dramatically every other time doesn't seem to bother them, but for right now, I'm supposed to be impressed that they are "startlingly high" for someone so young. (I'm not impressed, or bothered, and will just wait till next time before I panic, thank you very much.)
But aside from the cholesterol, my liver enzymes are elevated, which means ... what? Something. Maybe. Nothing? They are Not Sure. They want More Tests. They are Reviewing My Records. - Or, they will be doing all of that, they promise, when they return to the office in a Week and a Half. :sigh:
Which means the sinus surgery may have to be postponed, which I am not pleased about because, well, now that I am on board the train, I would like it to leave as soon as possible, so that I can get off of it as soon as possible. I do not like waiting. I do not like new problems to pop-up when I do not have the energy to deal with them. I do not need some new Skeletor to face, and I'd rather not have to deal with a recurrence of his arch-enemy either (Because, although all that that required was monitoring, liver ultrasounds - any ultrasounds - and me of the FM pain/tender body parts, do not get along well).
I'm just having the kind of the week where things seem to be crumbling/sucking no matter what I do... things that start off with the best of intentions are suddenly horrible and poisonous, and I have no idea where they went wrong or how to fix them.
So when the doctor - my primary care, whom I do not have much faith in at all - called and said "This is a problem. But I'm not going to be here to help you figure it out for two weeks", I wanted to dissolve into a puddle. I mean, I know, in my head, that there are things I can do - like calling the surgeon or Zack in that time, just so I know what their take on the whole thing is - but right now, all I want is for all the complications to Go Away.
Or, maybe I could go away: Where is Swift Wind when you need
(Did you know he was a he? I didn't.)
Wednesday, March 03, 2010
Still no new computer: I'm trying to decide, definitively, if I am a Mac or a PC. Right now, this is boiling down to two issues:
1) Do I have enough brain power to learn a new operating system? Even though every Mac user I have talked to says that it's an incredibly intuitive OS, it's still not what I am used to, and will therefore require me to learn things. Thinking back, I know I taught myself DOS and, later, Windows (we had a computer before Windows - can you even imagine?) when I started using them, but I am not as smart as I used to be. I say this semi-jokingly, but it's true: brain fog is my real enemy now, in a way it didn't used to be, so that even things that should be simple wind up being unbearably complicated. So I have to really consider whether I have the energy to deal with learning a new thing. (This is a particularly important consideration when you're thinking about things breaking - when my PC stops running, I know of about 13 different ways to try to get it back up again... with a Mac, I'm clueless, and would probably make things much worse.)
2) How much money can I spend? Did you know that if you are on SSI, you can't have more than $2000 in the bank? Yeah - people with disabilities are apparently an exception to the whole needing to have money/plan for the future in anyway thing. (You can read a great rant about that on FWD, if I can find the link.) So I'm not allowed to have over $2000, and a 15 inch Mac starts at $1600. Which means, less taxes and whatever else, I would have about $300 to my name. Until April. I am not entirely comfortable with this, as I am generally "worst case scenario" prepared - I like to have the cash on hand. So I'm trying to figure out how to get the most bang for my buck.
There's a couple of other considerations... like I have no Mac programs, which, when it comes to photo editing, is kind of important; knowing your tools and how to use them. And then there's the fact that I need to make the RIGHT decision, or else beat myself up for all eternity. Blah. Choices - who needs them?
No, I need them, and I need to make this one - I hate being wishy washy, especially about something so trivial. But I think I kind of obsess about the more trivial things I can control, since there's no use obsessing about the stuff I can't control and would like to. BUT I'm going to set myself a deadline of this weekend, and see if I can do a last bit of research either tomorrow night (we're having a Lil Girl sleepover tonight, so that's out) or Friday morning before I finally get the damn CT scan for my sinuses (that the doc ordered 4 weeks ago - GROWL - and which will necessitate me making an actually important decision about whether or not to have the surgery - double growl.) And then my bank card will weep for a few weeks, and my mom can have her little netbook back.
Any last input on the whole computer issue would be appreciated - do you love what you have? Hate it? Wish you'd gone PC/Mac when you made your last purchase? Anybody?
1) Do I have enough brain power to learn a new operating system? Even though every Mac user I have talked to says that it's an incredibly intuitive OS, it's still not what I am used to, and will therefore require me to learn things. Thinking back, I know I taught myself DOS and, later, Windows (we had a computer before Windows - can you even imagine?) when I started using them, but I am not as smart as I used to be. I say this semi-jokingly, but it's true: brain fog is my real enemy now, in a way it didn't used to be, so that even things that should be simple wind up being unbearably complicated. So I have to really consider whether I have the energy to deal with learning a new thing. (This is a particularly important consideration when you're thinking about things breaking - when my PC stops running, I know of about 13 different ways to try to get it back up again... with a Mac, I'm clueless, and would probably make things much worse.)
2) How much money can I spend? Did you know that if you are on SSI, you can't have more than $2000 in the bank? Yeah - people with disabilities are apparently an exception to the whole needing to have money/plan for the future in anyway thing. (You can read a great rant about that on FWD, if I can find the link.) So I'm not allowed to have over $2000, and a 15 inch Mac starts at $1600. Which means, less taxes and whatever else, I would have about $300 to my name. Until April. I am not entirely comfortable with this, as I am generally "worst case scenario" prepared - I like to have the cash on hand. So I'm trying to figure out how to get the most bang for my buck.
There's a couple of other considerations... like I have no Mac programs, which, when it comes to photo editing, is kind of important; knowing your tools and how to use them. And then there's the fact that I need to make the RIGHT decision, or else beat myself up for all eternity. Blah. Choices - who needs them?
No, I need them, and I need to make this one - I hate being wishy washy, especially about something so trivial. But I think I kind of obsess about the more trivial things I can control, since there's no use obsessing about the stuff I can't control and would like to. BUT I'm going to set myself a deadline of this weekend, and see if I can do a last bit of research either tomorrow night (we're having a Lil Girl sleepover tonight, so that's out) or Friday morning before I finally get the damn CT scan for my sinuses (that the doc ordered 4 weeks ago - GROWL - and which will necessitate me making an actually important decision about whether or not to have the surgery - double growl.) And then my bank card will weep for a few weeks, and my mom can have her little netbook back.
Any last input on the whole computer issue would be appreciated - do you love what you have? Hate it? Wish you'd gone PC/Mac when you made your last purchase? Anybody?
Saturday, September 05, 2009
" All night hearing voices telling me That I should get some sleep Because tomorrow might be good for something"
If you're one of the lucky people who have trouble sleeping, every night you eventually get to the point where you give up. Where you just say "Fuck it" and roll over and get on with your day.
When that time comes as early as 3:15 a.m., it tends not to bode well for the rest of your day, but you know it's as good as you're going to get.
Night has turned into a dreaded time for me. My fevers rage, for no reason, and I sweat and get sticky. The aches of my day must be accounted for - they make themselves known in ways and places that seem impossible, but are normal to me. I toss and turn - top to bottom, back again - and twist myself up, inside and out.
When I'm 'sleeping', it's like being barely under the surface - feeling every twinge, every twitch; hearing every sound; gluing my eyelids shut against the dawn. I struggle to stay 'asleep:' to go deeper, to go under, if just for a few minutes. I want to claim just a few blessed minutes of peace for myself. But I'm just aware enough to panic if the sleep starts to get real, as if I might drown in it, and I freeze in terror at the thought. I'm stuck there, in this half-sleep state, unable to surface, unable to sink.
Which is when the fun really begins. The debates (with myself) about sleeping pills, which really only make me drowsier, which is not something I need help with.
The deep breathing/meditation routine I've got down pat, but by the third time it gets old, and I'm still not asleep. The internal battle over windows open or closed/blankets on or off/pillows up or down/radio babbling or silent. And, finally, the frustration gets to be too much, and the light goes on while I grab for my book, or the TV clicks, blue light floods the room.
Or I come here, where I ramble on about not being able to sleep, and question whether it's coherent enough to post.
When that time comes as early as 3:15 a.m., it tends not to bode well for the rest of your day, but you know it's as good as you're going to get.
Night has turned into a dreaded time for me. My fevers rage, for no reason, and I sweat and get sticky. The aches of my day must be accounted for - they make themselves known in ways and places that seem impossible, but are normal to me. I toss and turn - top to bottom, back again - and twist myself up, inside and out.
When I'm 'sleeping', it's like being barely under the surface - feeling every twinge, every twitch; hearing every sound; gluing my eyelids shut against the dawn. I struggle to stay 'asleep:' to go deeper, to go under, if just for a few minutes. I want to claim just a few blessed minutes of peace for myself. But I'm just aware enough to panic if the sleep starts to get real, as if I might drown in it, and I freeze in terror at the thought. I'm stuck there, in this half-sleep state, unable to surface, unable to sink.
Which is when the fun really begins. The debates (with myself) about sleeping pills, which really only make me drowsier, which is not something I need help with.
The deep breathing/meditation routine I've got down pat, but by the third time it gets old, and I'm still not asleep. The internal battle over windows open or closed/blankets on or off/pillows up or down/radio babbling or silent. And, finally, the frustration gets to be too much, and the light goes on while I grab for my book, or the TV clicks, blue light floods the room.
Or I come here, where I ramble on about not being able to sleep, and question whether it's coherent enough to post.
“Chronic suffering creates its own chronic sense of time – a thick, stoical knowledge of how long a day takes to be digested, and of the secret folds and crease of time that a sleepless night conceals. Each portion of the twenty-four hours has its own touchy mood as well. The hours before midnight are sometimes hopeful; the darkness seems fresh, and almost like sleep. Even the minutes between one and two a.m. have their mild drama, the sense of a solitary tryst with the self. And in the middle of the night, the need to be brave for the sake of others is mercifully suspended. Everyone else is asleep. Bodies are at rest.
But the time just before dawn requires serious negotiation. These are scary, bottomless hours. It’s as if every night at four a.m. you have to sign a new contract, with many little riders, agreeing to wake up the next day. And this is when the prospect of going under becomes seductive. Struggle seems bogus, the work of a bad actor. At four a.m. fear and the imagination take over, interpreting every new symptom as hemorrhagic stroke and heart attack. Tumors are nocturnal. Like a dog with a bone, the pain runs away with you.
Then there is the loneliness. No one else is up at these hours, and if they are, they don’t want to be. Partners brew tea, droop, and chain-yawn. Even books seemed closed and shuttered for the night. Late-night radio channels voices from the other side – a kind of wacky Australia of exiles from the day light world. Only wolves, ghosts, new mothers, jazz DJs, and people in pain inhabit this corner of the night.
At four a.m., you have no choice but to lie there and accept the weight of time. Lie submerged in it like a boulder in a cold stream, half in the water, half breaching the air. You are bestride two elements now, like an artist in dialogue with the self. Pain has split you into the subject and the object, where, like Emily Dickinson, you can observe yourself decked out in the coffin of the moment.” Marni Jackson, Pain: the 5th Vital Sign
Wednesday, September 02, 2009
Being the guy (or in my case, the girl)
Lately I've been thinking of people's impressions of me, and my impressions of them, and how we all look at things so differently.
I stumbled across - in a completely random way - a person I know IRL's blog. And there was some stuff on there that I didn't know, that she hadn't shared, that I couldn't grasp through the random e-mails we exchange every six months. And I felt like the worst person alive.
As if I just will never be able to care about the people in my life the way they need me to care about them - the physical caring, the being there when things are falling to shit, the person who comes at the moment's notice. And, of course, that's who I most want to be.
There's a West Wing quote that I had up on my header for a long time, and it's just about the only quote I get right every time without having to look it up. That's because it was me they were talking about. The President says to Josh Lyman (a leader among men): "You want to know the difference between you and me? I want to be the guy. You want to be the guy the guy counts on."
I want to be the girl everyone counts on, and more often than not, I fall way, way short.
Reading this person's blog only really brought it home to me that for every birthday card I send or job interview I remember, for every "how are things there" e-mail I send or picture I make an extra copy of, there's a million everyday mishaps, disasters and heartbreaks that people can't turn to me for.
That because I suck at picking up the phone, and because I'm so often sick and wrapped up in what's wrong with me, and because it's such a god-damn struggle for me to drag myself through most of my days that I barely have enough energy to turn the damn television on and shut my brain off, that I am missing out on people's lives. The people I love's lives.
And that's somehow worse to me than the fact that I am missing out on my own life a lot of the time.
Which brings me to something else I've been reading lately that made me look at who I am a little bit differently. Facebook.
No, it's not the god-awful pictures my sisters choose to post or the fact that I rarely have anything interesting enough to post as a status update ("Am sore. And tired. And not sleeping, yet again." Yawn.): It's the status updates of some old friends who, not so much tracked me down as happened upon & friended me. These were the group of friends that, at one time, I felt closer to than my own family.
From ages 3-15 I was a dancer, and from 12-15, a dance instructor, at a local, neighborhood dance studio. It was a place where I felt comfortable, where I felt like I could be myself, where I felt accepted for the awkwardly geeky, musical loving, knows she wants to be a teacher even though she's twelve me that most of my world considered strange and annoying.
I danced non-stop during the week: three weekdays, every Saturday morning, practicing at home, rehearsing at other girls' houses, saving up for competitions and conventions and trying to make my body realize that it was made to jump higher, stretch further, move more gracefully. I was hardly ever uncomfortable there because I knew I could dance: I was long and not-exactly lean (the boobs, man, they grew early), and I couldn't jump the way some of the other girls could, and my ankles (after I broke and fractured them enough times) wouldn't let me en pointe any longer, but I was queen of kicks, and I could point my toe longer, stretch my legs straighter than most of the other girls, and I loved that I could fold my body in halves and thirds and back again.
When I joined the dance company, I knew I'd made it, that I was one of the best. When I was asked to be an aide, and then an instructor, I was beyond thrilled. I wore my purple leotard (the studio color) with pride and I took my responsibility as a teacher seriously: I showed up on my days off to help with other classes, to wash the glass mirrors, to set up for special events. I took vacations with the other teachers, babysat for the studio owner's kids, went to pool parties and on sleepovers. We formed a group of girls that I would practice with, that would watch old routines with me to help choreograph new ones, and I made what I thought were four true friends.
And then I got really, really sick. Those first three weeks, I couldn't roll out of bed for anything - not school, not dance, not food - and I called in sick and they all covered my classes without argument, hoping I'd feel better soon, being as upset as I was that I'd missed a meet. The owner told me not to worry, that my spot would be there when I recuperated.
Only I never did.
After that first month (October, if you're wondering), which the doctors think now was my 'initial infectious agent' (most likely mono), I lost a lot of weight, I lost a lot of ground with my schoolwork, I lost the sympathy and understanding of my family and teachers, and I lost a lot of friends.
Including my dancing friends. Who tried - for a while, they sent me cards and called to find out how I was doing. They told all my students how much I missed them, and told me how much the students missed me. They would ask my sister how I was feeling, tap my cousin for any new info.
Eventually I dragged myself back to the studio, only to lay on the mats, unable to breathe or move. I would pass out mid-pirouette, I would have to leave class to throw up (in the bathroom right next to the classroom, where everyone could hear), I would make it through the warm up and be too exhausted to actually dance. My vertigo got worse, the POTS got worse, and I know now that I actually made everything else worse because I ignored every.single.signal my body was giving me in order to keep dancing.
I didn't know that then. I didn't know what any of these things were - I had the CFS label, but none of the doctors could tell me what the hell that meant. None of them had any idea how long it could last, and more than half of them thought that I should just keep 'pushing' myself, because exercise makes you strong and giving in makes you weak. (Douchebags.)
The girls I was closest to were vaguely supportive - they kept me company on the mats while they changed their shoes for the next class - but they didn't understand it any better than I did. Part of it was the rumors that were going around about me - drugs, pregnancy, eating disorders - and I think now, looking back, that a lot of them were afraid - if I could get so sick, what was to stop it from happening to them? So they moved away from me - stopped calling to check in, stopped sending notes home with my sisters, just stopped - until we were so far apart that I couldn't figure out how to bridge the gap, and because I had so little energy, I didn't have any extra to try harder.
By June, I was out of school almost full time, but I was still pushing it at the studio. I was determined to be in the recital - after missing more classes than I can count, sitting and cheering from the sidelines at 2 competitions, paying for 3 conventions and having to sit them out as well. My mom had bought a costume for me - only one, instead of my regular 7 or 8 - and I was damn well going to dance. On stage. In it. And I did.
I nearly killed myself doing it - I laid down in the wings as I came off the stage, and had to be dragged/carried to the back room. Where I laid down for the rest of the show. At one point someone told the owner I'd had a heart attack and she came racing over to check on me. Good times. - But I did it. By then, it was mostly too late - the four girls I was closest with had moved on, bonded with my replacement over sleepovers and strategy meetings, and I was just the girl who couldn't dance anymore.
When September came around, I went so far as to register for classes, to drive out to the studio on the appointed day, only to sit in the car and break down, knowing that there was no possible way I could make it through the class. Mom was pretty pissed that I'd made her drive me out there, if I knew I was going to be able to do it, but here's the thing: Until I sat there, looking through the giant window at all of my friends at the barre bending and stretching and - fuck it - standing up? I didn't know. I couldn't let myself know. So we drove away, and I never went back.
And I've always been pretty hurt by how the other girls handled me getting sick - at what I felt (ok, still kind of feel) as their desertion. Because the only thing that had changed was that I got sick, and I couldn't help that. So, I've always looked back at those girls, most of them, with this mixture of pain and regret, with the sting of "they didn't care enough about me to stay close."
So having some of them friend me on Facebook has been an interesting experience. It's helped me realize that, yes: their abandonment of me was not ok, but I sort of abandoned them too - I just didn't have the energy to fight for our relationships, and so I just never came back. I never called any of them after that day I broke down in the car ~ I waited for them to call me, and was hurt when it never happened. But I could've done some of the lifting - made phone calls or sent letters (this was before I had e-mail, people: can you imagine??) - or just tried. But I didn't, because I was hurt and I was hurting, and I was sick and it seemed like no one cared.
And yes, I'm jealous now, that so many of them are still living the lives we'd planned for ourselves way back when - still dancing, still friends, still teaching, all mommies - but it's only because I want it for myself too, not because I don't want them to have it. I can wish them well when they open day cares and click the "like" button when they talk about how exhausting this week's dance class was. I can look at their photos of recitals that came after I left and be sad that I wasn't there, but still comment that they looked like they were having fun. I can congratulate them on their weddings and babies and engagements, and if I still feel a twinge of disappointment that we weren't able to do it all together, well, that's human.
But it the two experiences together - seeing how I can still feel joy for the people I felt have let me down so badly and seeing how badly I feel for letting the people I love down - have made me think a lot.
Not that I've come up with any answers, which is the least you deserve for making it through such a long winded post that really probably only makes sense to me.
But I haven't got any.
Just that I want to do better, to be better, but I don't know how to manage it. Which basically sums up every other single post I've ever written, so there you go.
I stumbled across - in a completely random way - a person I know IRL's blog. And there was some stuff on there that I didn't know, that she hadn't shared, that I couldn't grasp through the random e-mails we exchange every six months. And I felt like the worst person alive.
As if I just will never be able to care about the people in my life the way they need me to care about them - the physical caring, the being there when things are falling to shit, the person who comes at the moment's notice. And, of course, that's who I most want to be.
There's a West Wing quote that I had up on my header for a long time, and it's just about the only quote I get right every time without having to look it up. That's because it was me they were talking about. The President says to Josh Lyman (a leader among men): "You want to know the difference between you and me? I want to be the guy. You want to be the guy the guy counts on."
I want to be the girl everyone counts on, and more often than not, I fall way, way short.
Reading this person's blog only really brought it home to me that for every birthday card I send or job interview I remember, for every "how are things there" e-mail I send or picture I make an extra copy of, there's a million everyday mishaps, disasters and heartbreaks that people can't turn to me for.
That because I suck at picking up the phone, and because I'm so often sick and wrapped up in what's wrong with me, and because it's such a god-damn struggle for me to drag myself through most of my days that I barely have enough energy to turn the damn television on and shut my brain off, that I am missing out on people's lives. The people I love's lives.
And that's somehow worse to me than the fact that I am missing out on my own life a lot of the time.
Which brings me to something else I've been reading lately that made me look at who I am a little bit differently. Facebook.
No, it's not the god-awful pictures my sisters choose to post or the fact that I rarely have anything interesting enough to post as a status update ("Am sore. And tired. And not sleeping, yet again." Yawn.): It's the status updates of some old friends who, not so much tracked me down as happened upon & friended me. These were the group of friends that, at one time, I felt closer to than my own family.
From ages 3-15 I was a dancer, and from 12-15, a dance instructor, at a local, neighborhood dance studio. It was a place where I felt comfortable, where I felt like I could be myself, where I felt accepted for the awkwardly geeky, musical loving, knows she wants to be a teacher even though she's twelve me that most of my world considered strange and annoying.
I danced non-stop during the week: three weekdays, every Saturday morning, practicing at home, rehearsing at other girls' houses, saving up for competitions and conventions and trying to make my body realize that it was made to jump higher, stretch further, move more gracefully. I was hardly ever uncomfortable there because I knew I could dance: I was long and not-exactly lean (the boobs, man, they grew early), and I couldn't jump the way some of the other girls could, and my ankles (after I broke and fractured them enough times) wouldn't let me en pointe any longer, but I was queen of kicks, and I could point my toe longer, stretch my legs straighter than most of the other girls, and I loved that I could fold my body in halves and thirds and back again.
When I joined the dance company, I knew I'd made it, that I was one of the best. When I was asked to be an aide, and then an instructor, I was beyond thrilled. I wore my purple leotard (the studio color) with pride and I took my responsibility as a teacher seriously: I showed up on my days off to help with other classes, to wash the glass mirrors, to set up for special events. I took vacations with the other teachers, babysat for the studio owner's kids, went to pool parties and on sleepovers. We formed a group of girls that I would practice with, that would watch old routines with me to help choreograph new ones, and I made what I thought were four true friends.
And then I got really, really sick. Those first three weeks, I couldn't roll out of bed for anything - not school, not dance, not food - and I called in sick and they all covered my classes without argument, hoping I'd feel better soon, being as upset as I was that I'd missed a meet. The owner told me not to worry, that my spot would be there when I recuperated.
Only I never did.
After that first month (October, if you're wondering), which the doctors think now was my 'initial infectious agent' (most likely mono), I lost a lot of weight, I lost a lot of ground with my schoolwork, I lost the sympathy and understanding of my family and teachers, and I lost a lot of friends.
Including my dancing friends. Who tried - for a while, they sent me cards and called to find out how I was doing. They told all my students how much I missed them, and told me how much the students missed me. They would ask my sister how I was feeling, tap my cousin for any new info.
Eventually I dragged myself back to the studio, only to lay on the mats, unable to breathe or move. I would pass out mid-pirouette, I would have to leave class to throw up (in the bathroom right next to the classroom, where everyone could hear), I would make it through the warm up and be too exhausted to actually dance. My vertigo got worse, the POTS got worse, and I know now that I actually made everything else worse because I ignored every.single.signal my body was giving me in order to keep dancing.
I didn't know that then. I didn't know what any of these things were - I had the CFS label, but none of the doctors could tell me what the hell that meant. None of them had any idea how long it could last, and more than half of them thought that I should just keep 'pushing' myself, because exercise makes you strong and giving in makes you weak. (Douchebags.)
The girls I was closest to were vaguely supportive - they kept me company on the mats while they changed their shoes for the next class - but they didn't understand it any better than I did. Part of it was the rumors that were going around about me - drugs, pregnancy, eating disorders - and I think now, looking back, that a lot of them were afraid - if I could get so sick, what was to stop it from happening to them? So they moved away from me - stopped calling to check in, stopped sending notes home with my sisters, just stopped - until we were so far apart that I couldn't figure out how to bridge the gap, and because I had so little energy, I didn't have any extra to try harder.
By June, I was out of school almost full time, but I was still pushing it at the studio. I was determined to be in the recital - after missing more classes than I can count, sitting and cheering from the sidelines at 2 competitions, paying for 3 conventions and having to sit them out as well. My mom had bought a costume for me - only one, instead of my regular 7 or 8 - and I was damn well going to dance. On stage. In it. And I did.
I nearly killed myself doing it - I laid down in the wings as I came off the stage, and had to be dragged/carried to the back room. Where I laid down for the rest of the show. At one point someone told the owner I'd had a heart attack and she came racing over to check on me. Good times. - But I did it. By then, it was mostly too late - the four girls I was closest with had moved on, bonded with my replacement over sleepovers and strategy meetings, and I was just the girl who couldn't dance anymore.
When September came around, I went so far as to register for classes, to drive out to the studio on the appointed day, only to sit in the car and break down, knowing that there was no possible way I could make it through the class. Mom was pretty pissed that I'd made her drive me out there, if I knew I was going to be able to do it, but here's the thing: Until I sat there, looking through the giant window at all of my friends at the barre bending and stretching and - fuck it - standing up? I didn't know. I couldn't let myself know. So we drove away, and I never went back.
And I've always been pretty hurt by how the other girls handled me getting sick - at what I felt (ok, still kind of feel) as their desertion. Because the only thing that had changed was that I got sick, and I couldn't help that. So, I've always looked back at those girls, most of them, with this mixture of pain and regret, with the sting of "they didn't care enough about me to stay close."
So having some of them friend me on Facebook has been an interesting experience. It's helped me realize that, yes: their abandonment of me was not ok, but I sort of abandoned them too - I just didn't have the energy to fight for our relationships, and so I just never came back. I never called any of them after that day I broke down in the car ~ I waited for them to call me, and was hurt when it never happened. But I could've done some of the lifting - made phone calls or sent letters (this was before I had e-mail, people: can you imagine??) - or just tried. But I didn't, because I was hurt and I was hurting, and I was sick and it seemed like no one cared.
And yes, I'm jealous now, that so many of them are still living the lives we'd planned for ourselves way back when - still dancing, still friends, still teaching, all mommies - but it's only because I want it for myself too, not because I don't want them to have it. I can wish them well when they open day cares and click the "like" button when they talk about how exhausting this week's dance class was. I can look at their photos of recitals that came after I left and be sad that I wasn't there, but still comment that they looked like they were having fun. I can congratulate them on their weddings and babies and engagements, and if I still feel a twinge of disappointment that we weren't able to do it all together, well, that's human.
But it the two experiences together - seeing how I can still feel joy for the people I felt have let me down so badly and seeing how badly I feel for letting the people I love down - have made me think a lot.
Not that I've come up with any answers, which is the least you deserve for making it through such a long winded post that really probably only makes sense to me.
But I haven't got any.
Just that I want to do better, to be better, but I don't know how to manage it. Which basically sums up every other single post I've ever written, so there you go.
Wednesday, April 08, 2009
If you're having a hard time
trying to decide between laughing and crying, I'm going to add to your problems and link you to some "Science."
I hope to god that's a joke... because if that's how people are learning their 'science', I'm surprised we as a species, still exist.
I hope to god that's a joke... because if that's how people are learning their 'science', I'm surprised we as a species, still exist.
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