*This year will be brought to you by the word "Share" - alternate, very Sesame Street-styled post title.
As always, I gave a lot of thought to what I want this year to be and provide, the benefits I'm hoping for, and the weaknesses I'd like to overcome. I actually came up with this while writing my last post of last year, as I was going through my list of moments that mattered most to me, and trying to come up with ways to create that feeling as much as possible this year.
What it came down to, really, was that a lot of those moments were spent with the people I care about, or were about me being open to new things/people, or about embracing parts of myself that I have (in the past) tried to ignore or downplay. So this year's theme word is going to be sharing.
Sharing the parts of me I generally keep well hidden - including being more honest. Both in general - I'm not some huge liar or anything, but I tend to keep things fuzzy and broad when I'm talking about myself - and, more specifically, about my health. Which, for me, will mean answering more truthfully when people that care ask me how I am doing. My stock answer "I'm doing" is both a family joke and technically true, but if I get the sense that the person who asks actually cares and actively wants to know, I'm going to attempt to be more open about how I'm actually feeling. There are two keys here - 1) Only giving real information people I know aren't just asking as filler or who want the broad strokes answer and 2) Finding some sort of middle ground between smoothing things over and trying to accurately explain to people who love me how much I am truly suffering. After more than one missed opportunity last year, and a few run ins with family members saying things like "I don't even know what you're diagnosed with" or "Is that new?" about a serious heart problem I've had since I was a teenager, I feel like I'm doing myself a real disservice with the standard glib answer. So, where and when it is possible, I'm going to share this piece of myself a little bit more clearly.
Sharing means being open to new experiences and people and plans - both offline and on. I'm hoping to attend my first Con this summer (Boston Comic-Con 2014); I want to make plans with each of my siblings and nephews and niece for stuff we've never done before or stuff we haven't done in a really long time (and maybe get a portrait done for my mother, who's been asking forever); I'm going to be moving somewhere, somehow this year, and I've got to just embrace not knowing, and then wherever we wind up going; I've got to finally nail down a new treatment plan with Zach, even though I've been balking for a while (because all of the options are scary); I want to put myself in new positions & embrace being curious.
Sharing means taking more opportunities to create things, taking the things I create more seriously, and overcoming some of my fears about letting other people see/experience/know about those things. (It does not mean I'm telling my family about my blog, because Hell No.) But it might mean joining new forums, meeting up with like-minded creative people more often in real life, self-promoting a bit, or finally finishing some of the seventeen projects I've got in some form of unfinished. It definitely means taking more pictures, writing more words, reading more books, playing more games, loving more people, embracing my inner geekess and librarian and letter-writer.
Sharing means feeling feelings and not hiding them. Quitting the passive-aggressive bullshit and standing up for myself and others in more
clear terms. More social activism - both online and in real life, if possible - and incorporating it into my own life better. Making sure my values are the things I'm living by, not just the things I'm hoping to live by.
Sharing is going to mean letting other people share more, being more open to other people's feelings and perspectives and lives with less judgment on my part. This is already something I've been working on, but I need to keep at it... I want to be the person people come to, and for some people, I am. I am very proud of that, and I value those relationships. I also know I can't be that person for everybody in my life, but there are still some steps I can take to foster better relationships, and those I can take. This is going to be a rough year for my family, and some of them don't even realize it yet. I want to be as available as I can be - without getting taken advantage of (!!!) - because you're there for the people who matter to you, as much as you can be.
Sharing means more friend time, more chances for new friends, more linking and liking. It means embracing sadness but not the isolation it thrives in; having a good day and then telling people about the flare it caused and how that puts a damper on the happy; it means spreading my self-care strategies around so they can benefit other people.
Sharing is less hiding and more showing up; less worrying by myself and more accepting helping hands; paying compliments when I think them instead of hoarding them for later; keeping dollar bills and packs of gum in the car for people who beg on street corners; letting things I don't need anymore go out into the world where they can be of use to someone else.
Sharing is ...
It's just showing up more. And opening up more. And hoping that the world - or at least my little corner of it - follows suit.
And it's wishing all of you the happiest 2014 that there can be. Whatever comes, know if you want to talk about it, I'm here to listen. And know that you all play a large part in saving my sanity, if not my life, because I know you're out there listening too.
Ok 2014: Be nice to us.
Showing posts with label Friends. Show all posts
Showing posts with label Friends. Show all posts
Thursday, January 02, 2014
Wednesday, June 29, 2011
Ladies who lunch
Went out to lunch today with some of my girlfriends from college, and some of their kids. I had a pretty good time, but it was, as always, bittersweet. They talked about their jobs and their families, their moves and houses, and when it came around to my turn to update everybody, I just talked about all the things everybody else in my life was doing - getting married or graduating from college, moving in/out or heading to the 6th grade - as I had nothing new to report.
SSDD, Ladies. Well, Same (enhanced) Shit, Different Decade, honestly. It's frigging frustrating, for sure. But even with all of that, and the general left behind feeling that follows, I'm glad I got to go out for a bit, be around different people, people that I care about & who care about me. I got to meet new babies (4 and 1 year olds aren't exactly babies, but new to me, anyways), and talk about things that are not my family or my health, which is all I ever seem to have to talk about (as is evidenced here by recent posts, as well as lack of posts). And a friend who lives just down the road a piece volunteered to give me a ride home, so that was even better because I rarely get to go places 'on my own', and not having to wait for your mother to pick you up does help you feel slightly more adult.
Doctors always say things about getting out more, and making sure you have a social network, people you can count on, when you're living with chronic illness. And it definitely has its upsides, for sure. Tons of benefits. But I think they underestimate a) how hard it is to build that network in the first place and b) the toll it takes - not just physically, what with the energy you have to expend to be social and leave the house and all that (and holy jesus, I forget that leaving the house to see other people requires things like makeup and non-holey clothing) - but emotionally, to maintain it. It's hard to see them all moving on and going forward and to still, still feel like you're stuck. I am so sick of being stuck.
Anyways, like I said, it was mostly good. I'm trying to focus on that. Although I should have remembered to take a picture, because one of the girls is moving to Tennessee in a couple of weeks, and who knows when we'll see her next, but that didn't occur to me until about three hours ago, so what are you going to do?
Tomorrow the kids will be over, and I have no plans for what to do with them, but I'm sure we'll figure something out. We always do.
SSDD, Ladies. Well, Same (enhanced) Shit, Different Decade, honestly. It's frigging frustrating, for sure. But even with all of that, and the general left behind feeling that follows, I'm glad I got to go out for a bit, be around different people, people that I care about & who care about me. I got to meet new babies (4 and 1 year olds aren't exactly babies, but new to me, anyways), and talk about things that are not my family or my health, which is all I ever seem to have to talk about (as is evidenced here by recent posts, as well as lack of posts). And a friend who lives just down the road a piece volunteered to give me a ride home, so that was even better because I rarely get to go places 'on my own', and not having to wait for your mother to pick you up does help you feel slightly more adult.
Doctors always say things about getting out more, and making sure you have a social network, people you can count on, when you're living with chronic illness. And it definitely has its upsides, for sure. Tons of benefits. But I think they underestimate a) how hard it is to build that network in the first place and b) the toll it takes - not just physically, what with the energy you have to expend to be social and leave the house and all that (and holy jesus, I forget that leaving the house to see other people requires things like makeup and non-holey clothing) - but emotionally, to maintain it. It's hard to see them all moving on and going forward and to still, still feel like you're stuck. I am so sick of being stuck.
Anyways, like I said, it was mostly good. I'm trying to focus on that. Although I should have remembered to take a picture, because one of the girls is moving to Tennessee in a couple of weeks, and who knows when we'll see her next, but that didn't occur to me until about three hours ago, so what are you going to do?
Tomorrow the kids will be over, and I have no plans for what to do with them, but I'm sure we'll figure something out. We always do.
Thursday, November 04, 2010
"Forgiving does not erase the bitter past. A healed memory is not a deleted memory."*
Day 04 Something you have to forgive someone for.
Contrary to the opinion of certain siblings of mine, having a good memory does not mean that I hold a lot of grudges: Just because I remember, very clearly, the time you broke the tiny little gumball machine I had in my dollhouse, even though you were forbidden to play with my dollhouse, doesn't mean that, 20 some odd years later, I am still hating you for it. All is forgiven, I promise.
But there are some grudges I do hold, and some people I will not forgive. If you've read this blog with any regularity, then you know that the atrocities of the PUS (People UpStairs, my former uncle and his family) are things that I am just totally, and without any compunction about it, unwilling to forgive. I've moved past them - cutting them out of my life completely was a big help there - but abuse and mistreatment, terrorizing people and contributing to our family in only a poisonous, vicious manner are not things I'm willing to forgive. Don't need to think about you anymore, thank god, but when/if I do, it won't be with a forgiveness that you never earned.
That said, there are some things that I've been holding on to that I could definitely let go of. These are things that still had a huge impact in my life, but were perhaps not meant to be harmful/hurtful, or were done thoughtlessly, or can be attributed to age/stage of life, that I can honestly say "Yeah: you screwed up there, but I'm going to just let it go."
The major one I have in mind is the way people dropped out of my life when I got sick. I've been dealing with the emotional fallout from that for as long as I've been dealing with the physical ramifications of my illness, and sometimes, the emotional stuff was harder. Because I didn't do anything wrong. But I still lost a lot of people who were important to me. And that wasn't right, and it wasn't fair: It was like I'd been sliced in half, and nothing made it clearer to me that I was different now than the fact that I didn't belong anywhere I thought was my place, not anymore.
But now that I'm older, and now that I can see it from the outside (somewhat), I understand that it wasn't so much that you all were rejecting me, it was that you got caught up in your lives, and mine - which was, by necessity, taking place in extreme slow motion - just fell behind. I know that you didn't mean to hurt me when you let me go, and that's an important thing to remember, to consider.
I also have to remember that some of you were teenagers, just like me, and others of you were younger than me, and what was happening to me was both scary and boring at the exact same time. It must have been hard to try to stay connected with someone who didn't show up to any of the social gatherings that are so vital to high school life. I can see how calling and being told that I was either sleeping or too sick to come to the phone could get old really fast. I can understand that watching me sleep in the corner at work must have been frustrating to you, especially when you had to cover all my classes for me. I can empathize with little girls who thought I was sucking up all of our mom's attention, who couldn't understand why I didn't have to do chores anymore, who hated that I wasn't any fun to be around.
And I can see how, as weeks turned into months, and months turned into a year, and the years kept on multiplying, that you could just keep moving on, while I had to stay behind. It hurts, I have to say that it's surprising how much it can still hurt that so many people just didn't have it in them to stay, but right now, at this point, I can see that it wasn't that you didn't care, it was that it got too hard.
And I forgive you for distancing yourself from me, because if I could have, I would have too.
And I'm glad that some of you came back, when you could. It's been different between us, but we are grown ups now anyways, so how could it not be?
So there: Some of you walked away, some of you ran, some of you just faded out. And it hurt, but I survived it.
Forgiving it - given the circumstances - doesn't seem like that big of a deal, after that.
* Beverly Flanigan
Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.
Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.
Day 11 Something people seem to compliment you the most on.
Day 12 Something you never get compliments on.
Day 13 A band or artist that has gotten you through some tough ass days. (write a letter.)
Day 14 A hero that has let you down. (letter)
Day 15 Something or someone you couldn’t live without, because you’ve tried living without it.
Day 16 Someone or something you definitely could live without.
Day 17 A book you’ve read that changed your views on something.
Day 18 Your views on gay marriage.
Day 19 What do you think of religion? Or what do you think of politics?
Day 20 Your views on drugs and alcohol.
Day 21 (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?
Day 22 Something you wish you hadn’t done in your life.
Day 23 Something you wish you had done in your life.
Day 24 Make a playlist to someone, and explain why you chose all the songs. (Just post the titles and artists and letter)
Day 25 The reason you believe you’re still alive today.
Day 26 Have you ever thought about giving up on life? If so, when and why?
Day 27 What’s the best thing going for you right now?
Day 28 What if you were pregnant or got someone pregnant, what would you do?
Day 29 Something you hope to change about yourself. And why.
Day 30 A letter to yourself, tell yourself EVERYTHING you love about yourself
Contrary to the opinion of certain siblings of mine, having a good memory does not mean that I hold a lot of grudges: Just because I remember, very clearly, the time you broke the tiny little gumball machine I had in my dollhouse, even though you were forbidden to play with my dollhouse, doesn't mean that, 20 some odd years later, I am still hating you for it. All is forgiven, I promise.
But there are some grudges I do hold, and some people I will not forgive. If you've read this blog with any regularity, then you know that the atrocities of the PUS (People UpStairs, my former uncle and his family) are things that I am just totally, and without any compunction about it, unwilling to forgive. I've moved past them - cutting them out of my life completely was a big help there - but abuse and mistreatment, terrorizing people and contributing to our family in only a poisonous, vicious manner are not things I'm willing to forgive. Don't need to think about you anymore, thank god, but when/if I do, it won't be with a forgiveness that you never earned.
That said, there are some things that I've been holding on to that I could definitely let go of. These are things that still had a huge impact in my life, but were perhaps not meant to be harmful/hurtful, or were done thoughtlessly, or can be attributed to age/stage of life, that I can honestly say "Yeah: you screwed up there, but I'm going to just let it go."
The major one I have in mind is the way people dropped out of my life when I got sick. I've been dealing with the emotional fallout from that for as long as I've been dealing with the physical ramifications of my illness, and sometimes, the emotional stuff was harder. Because I didn't do anything wrong. But I still lost a lot of people who were important to me. And that wasn't right, and it wasn't fair: It was like I'd been sliced in half, and nothing made it clearer to me that I was different now than the fact that I didn't belong anywhere I thought was my place, not anymore.
But now that I'm older, and now that I can see it from the outside (somewhat), I understand that it wasn't so much that you all were rejecting me, it was that you got caught up in your lives, and mine - which was, by necessity, taking place in extreme slow motion - just fell behind. I know that you didn't mean to hurt me when you let me go, and that's an important thing to remember, to consider.
I also have to remember that some of you were teenagers, just like me, and others of you were younger than me, and what was happening to me was both scary and boring at the exact same time. It must have been hard to try to stay connected with someone who didn't show up to any of the social gatherings that are so vital to high school life. I can see how calling and being told that I was either sleeping or too sick to come to the phone could get old really fast. I can understand that watching me sleep in the corner at work must have been frustrating to you, especially when you had to cover all my classes for me. I can empathize with little girls who thought I was sucking up all of our mom's attention, who couldn't understand why I didn't have to do chores anymore, who hated that I wasn't any fun to be around.
And I can see how, as weeks turned into months, and months turned into a year, and the years kept on multiplying, that you could just keep moving on, while I had to stay behind. It hurts, I have to say that it's surprising how much it can still hurt that so many people just didn't have it in them to stay, but right now, at this point, I can see that it wasn't that you didn't care, it was that it got too hard.
And I forgive you for distancing yourself from me, because if I could have, I would have too.
And I'm glad that some of you came back, when you could. It's been different between us, but we are grown ups now anyways, so how could it not be?
So there: Some of you walked away, some of you ran, some of you just faded out. And it hurt, but I survived it.
Forgiving it - given the circumstances - doesn't seem like that big of a deal, after that.
* Beverly Flanigan
Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.
Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.
Day 11 Something people seem to compliment you the most on.
Day 12 Something you never get compliments on.
Day 13 A band or artist that has gotten you through some tough ass days. (write a letter.)
Day 14 A hero that has let you down. (letter)
Day 15 Something or someone you couldn’t live without, because you’ve tried living without it.
Day 16 Someone or something you definitely could live without.
Day 17 A book you’ve read that changed your views on something.
Day 18 Your views on gay marriage.
Day 19 What do you think of religion? Or what do you think of politics?
Day 20 Your views on drugs and alcohol.
Day 21 (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?
Day 22 Something you wish you hadn’t done in your life.
Day 23 Something you wish you had done in your life.
Day 24 Make a playlist to someone, and explain why you chose all the songs. (Just post the titles and artists and letter)
Day 25 The reason you believe you’re still alive today.
Day 26 Have you ever thought about giving up on life? If so, when and why?
Day 27 What’s the best thing going for you right now?
Day 28 What if you were pregnant or got someone pregnant, what would you do?
Day 29 Something you hope to change about yourself. And why.
Day 30 A letter to yourself, tell yourself EVERYTHING you love about yourself
Thursday, August 26, 2010
I be back
Hey everybody: I know it's been a little while, but have no fear, I have not (as Crazed Mom has worried about) been a part of the blog-apocalypse or anything like that. Nope, it's just regular, end of summer, everybody has their vacation at one time, trying to cram experiences into the last few weeks before school starts mayhem.
I told y'all we'd be having some visitors, and boy howdy*, did we have visitors. My sister and her boys came for about a week, and Lil Girl and her brother decided to stay with us most of that week too, because their cousins were here. Which is awesome and wonderful, and I'm so happy that they (mostly) get along because there is such a wide range of ages (8 months to 14 years), and that could be bad news, but (mostly) works for them. One of my most cherished memories of my childhood summers is the week in August that my Virginia cousins would visit... I can remember crying every time they left and almost holding my breath every summer till it was time for them to come back. I'm so glad that my niece and nephews can have the same kind of connection (and, since Sister S's boys only live in New Hampshire, get to have more than one visit a year).
But that's not to say that it didn't take a lot out of me, and really made me realize that I am still - three months post-op - definitely still in a recovery phase. I just didn't have (what passes for) my normal level of stamina or strength, and, by the middle of the week, I was getting lots of concerned questions from both Sister S and Oldest Nephew. They kept asking if I was mad, which is the question I tend to get asked a lot if the pain is showing up on my face. I had to keep reassuring them that I wasn't mad (because I wasn't), just really, really sore. Since I have had 15 years of practice in covering up how badly I am feeling (particularly around the kids), it has to be pretty horrible for that much to be leaking out. I also don't necessarily think it was bad for it to be showing - Sister S, and her oldest boy, to some extent - still don't really "get" the whole chronic illness thing, mostly because they only briefly lived with me while I was ill. They don't quite understand how bad it can get, because I mostly hide it when they are here, so as not to put a damper on the visit. Which is possible on a weekend visit, or a day trip, but for a whole week? Never gonna happen. Eventually it catches up with me, and in this case, it was definitely sooner rather than later.
While they were here, we managed to get most of the whole immediate family crew together (minus Sister K who went to Montana with her boyfriend) for a little trek to a local old timey amusement park. It's a place that holds a lot of memories for most of us, as Nana (5th grade teacher extraordinaire) used to take her classes there on a field trip every year. She and the other chaperones would bring beach chairs and park under a giant willow tree, while the kids ran across the parking lot to the arcade with the warnings of "Absolutely no one goes to the beach!" and "If you don't come when I blow this whistle, we leave without you and you can explain to your parents why you didn't make the bus" ringing in their ears.
This trip we all had a great time, we took lots of pictures, and I will talk about it some more in a later picture filled post. But it was a really special day.
Added to that, I got a visit from College Roommate/ Best Friend, and her two little girls, who I haven't seen since before Christmas, because of various illnesses (on my part) and busy social calendars (on hers). We had a very nice visit, and definitely won't go so long this time in between. And then one of those fore mentioned Virginia cousins - who now lives in Maine - came down with her mom, husband and little boy and we had lunch together at Grandmother's house, with her kids and the kids my heart says are part mine running around in the yard while we - the grownups!?! - watched from the porch. It was pretty awesome, although I still really, really don't feel like a grownup.
So that's where I've been: visiting with sisters and brothers and nieces and nephews and best friends and their kids and Virginia cousins that now live in Maine, and taking field trips down memory lane. As exhausting, punishing and painful as it has been physically, it was definitely worth it. Although I am still recuperating - from both the summer and the stupid surgery - I'm glad that we got a chance to get everybody together, and that so many people I've been missing managed to make their way to me this summer.
Plus, now I have a ton of photos to edit, and some of them I actually love, so it's bonuses all around.
*I have no idea where the Southern accent came from: I apologize for the "boy howdy."
I told y'all we'd be having some visitors, and boy howdy*, did we have visitors. My sister and her boys came for about a week, and Lil Girl and her brother decided to stay with us most of that week too, because their cousins were here. Which is awesome and wonderful, and I'm so happy that they (mostly) get along because there is such a wide range of ages (8 months to 14 years), and that could be bad news, but (mostly) works for them. One of my most cherished memories of my childhood summers is the week in August that my Virginia cousins would visit... I can remember crying every time they left and almost holding my breath every summer till it was time for them to come back. I'm so glad that my niece and nephews can have the same kind of connection (and, since Sister S's boys only live in New Hampshire, get to have more than one visit a year).
But that's not to say that it didn't take a lot out of me, and really made me realize that I am still - three months post-op - definitely still in a recovery phase. I just didn't have (what passes for) my normal level of stamina or strength, and, by the middle of the week, I was getting lots of concerned questions from both Sister S and Oldest Nephew. They kept asking if I was mad, which is the question I tend to get asked a lot if the pain is showing up on my face. I had to keep reassuring them that I wasn't mad (because I wasn't), just really, really sore. Since I have had 15 years of practice in covering up how badly I am feeling (particularly around the kids), it has to be pretty horrible for that much to be leaking out. I also don't necessarily think it was bad for it to be showing - Sister S, and her oldest boy, to some extent - still don't really "get" the whole chronic illness thing, mostly because they only briefly lived with me while I was ill. They don't quite understand how bad it can get, because I mostly hide it when they are here, so as not to put a damper on the visit. Which is possible on a weekend visit, or a day trip, but for a whole week? Never gonna happen. Eventually it catches up with me, and in this case, it was definitely sooner rather than later.
While they were here, we managed to get most of the whole immediate family crew together (minus Sister K who went to Montana with her boyfriend) for a little trek to a local old timey amusement park. It's a place that holds a lot of memories for most of us, as Nana (5th grade teacher extraordinaire) used to take her classes there on a field trip every year. She and the other chaperones would bring beach chairs and park under a giant willow tree, while the kids ran across the parking lot to the arcade with the warnings of "Absolutely no one goes to the beach!" and "If you don't come when I blow this whistle, we leave without you and you can explain to your parents why you didn't make the bus" ringing in their ears.
This trip we all had a great time, we took lots of pictures, and I will talk about it some more in a later picture filled post. But it was a really special day.
Added to that, I got a visit from College Roommate/ Best Friend, and her two little girls, who I haven't seen since before Christmas, because of various illnesses (on my part) and busy social calendars (on hers). We had a very nice visit, and definitely won't go so long this time in between. And then one of those fore mentioned Virginia cousins - who now lives in Maine - came down with her mom, husband and little boy and we had lunch together at Grandmother's house, with her kids and the kids my heart says are part mine running around in the yard while we - the grownups!?! - watched from the porch. It was pretty awesome, although I still really, really don't feel like a grownup.
So that's where I've been: visiting with sisters and brothers and nieces and nephews and best friends and their kids and Virginia cousins that now live in Maine, and taking field trips down memory lane. As exhausting, punishing and painful as it has been physically, it was definitely worth it. Although I am still recuperating - from both the summer and the stupid surgery - I'm glad that we got a chance to get everybody together, and that so many people I've been missing managed to make their way to me this summer.
Plus, now I have a ton of photos to edit, and some of them I actually love, so it's bonuses all around.
*I have no idea where the Southern accent came from: I apologize for the "boy howdy."
Sunday, September 13, 2009
Some random thoughts
and quotes, just to give you a sense of how my weekend's going.
:Sigh: Not having the easiest time finding a dress that fits me in a reasonable way, and having found one that I think works, I now have to search for shoes. Wicked excited about that, if you couldn't tell. Am focusing on how happy my friend is, how wonderful it will be to see her get married, and how, really, ain't nobody going to be paying attention to me.
I'm finding that unpacking and moving in are not just physical actions, there's a lot of mental work involved as well. Giving up some things, holding on to others, deciding which is which is difficult work, and so I spend a lot of time thinking "I should be doing X" and instead checking my Google Reader. Which isn't to say I haven't accomplished somethings:
Going through my pharmacological supply and realizing that I've taken over 100 kinds of pills that have done zero, zip, nada for me? Hard. Throwing them away? Easy.
Seeing some of the stuff I've set aside in my hope chest (which was never really about getting married for me, but more about having a family), and realizing that I'm still hoping? Still on hold when it comes to those dreams? Hard. So, so hard. Still imagining the little bald babies (in my family, there are only bald babies) that might someday be wearing these things? Very, very easy.
Realizing that things I played with, or wore, or that we had around the house when I was a kid are now considered 'vintage'? Not exactly hard, but kind of ridiculous feeling, just the same. Realizing that I can take advantage of this and label things as 'vintage' when we list them on e-bay, etsy or craigslist? Awesome.
I am also, as always, caught up in the middle of various family issues. A baby shower and who should plan it. Parents who need to quit smoking, but just can't seem to. (And, my inability to just FORCE them to, which shows me just how much of a control freak I can be.) A sister who doesn't understand that texting and driving (or drinking "so long as I'm not drunk" and driving. or 3 in the morning combined with either or both of these things and driving) is not just stupid and dangerous, but hypocritical of her. (This is one of those things I "just don't understand" because I don't drive or drink - she "knows her limits and isn't stupid enough to drive if she's too tired/drunk/distracted." Seriously? I tried to explain that NOBODY thinks they're too drunk/tired/distracted, and yet people are still dying/killing other people. I had to leave the room before one of us wound up punching the other.) A nephew who needs his parents to pay attention to him, and can't seem to get their attention in any positive way. A brother who's blind to all he's got, reckless with his own life, & careless with the lives of those he's supposed to be caring for. A grandmother who's isolated again, now that I'm not there, and UJ is painting their porch, but doesn't want to come over because "it's such a bother" to us. (Head -> desk. NOT A BOTHER! Also, it's Grandparent's Day, and you are my one surviving grandparent... please let me be bothered!)
All of that stuff is buzzing around, and there's so much of it that I often feel like a radio that can't tune into just one station - there's too much static, too much fuzz, and there's always some other faint voice playing over the specific thing you're trying to hear. And then there's how I feel which can not just cover up the sounds I'm listening for, but break in with it's on emergency alert tone if that's what it takes to get me to listen to it. It makes for a muddle, sometimes.
I keep practicing my breathing, though, in the hopes that I can sometimes settle on just the one thing: the hard part is figuring out which is the right thing. And not feeling horrible at the million or so other things that get left out, hoping that you're getting to the stuff that really matters, and that the stuff you're letting go can figure itself out without your help.
(And that makes it seem like I think I am the center of the universe, which I really don't. I just find it hard to figure out where to put my energy sometimes, and find it impossible to just not worry about the things I don't get to.)
Anyways...
Have a nice, deep breathing picture to help you through your day... I hope you all are doing well today.
via MissWallFlower
"I will never be the woman with the perfect hair, who can wear white and not spill on it."via Quotebook
Sex and the City.
:Sigh: Not having the easiest time finding a dress that fits me in a reasonable way, and having found one that I think works, I now have to search for shoes. Wicked excited about that, if you couldn't tell. Am focusing on how happy my friend is, how wonderful it will be to see her get married, and how, really, ain't nobody going to be paying attention to me.
"If you're going to find out who you'll become, you need space in your life for who you are, rather than storing reminders of who you thought you were going to be." Dr. Wende
I'm finding that unpacking and moving in are not just physical actions, there's a lot of mental work involved as well. Giving up some things, holding on to others, deciding which is which is difficult work, and so I spend a lot of time thinking "I should be doing X" and instead checking my Google Reader. Which isn't to say I haven't accomplished somethings:
Going through my pharmacological supply and realizing that I've taken over 100 kinds of pills that have done zero, zip, nada for me? Hard. Throwing them away? Easy.
Seeing some of the stuff I've set aside in my hope chest (which was never really about getting married for me, but more about having a family), and realizing that I'm still hoping? Still on hold when it comes to those dreams? Hard. So, so hard. Still imagining the little bald babies (in my family, there are only bald babies) that might someday be wearing these things? Very, very easy.
Realizing that things I played with, or wore, or that we had around the house when I was a kid are now considered 'vintage'? Not exactly hard, but kind of ridiculous feeling, just the same. Realizing that I can take advantage of this and label things as 'vintage' when we list them on e-bay, etsy or craigslist? Awesome.
"It does not take much strength to do things, but it requires great strength to decide on what to do." Elbert Hubbard
I am also, as always, caught up in the middle of various family issues. A baby shower and who should plan it. Parents who need to quit smoking, but just can't seem to. (And, my inability to just FORCE them to, which shows me just how much of a control freak I can be.) A sister who doesn't understand that texting and driving (or drinking "so long as I'm not drunk" and driving. or 3 in the morning combined with either or both of these things and driving) is not just stupid and dangerous, but hypocritical of her. (This is one of those things I "just don't understand" because I don't drive or drink - she "knows her limits and isn't stupid enough to drive if she's too tired/drunk/distracted." Seriously? I tried to explain that NOBODY thinks they're too drunk/tired/distracted, and yet people are still dying/killing other people. I had to leave the room before one of us wound up punching the other.) A nephew who needs his parents to pay attention to him, and can't seem to get their attention in any positive way. A brother who's blind to all he's got, reckless with his own life, & careless with the lives of those he's supposed to be caring for. A grandmother who's isolated again, now that I'm not there, and UJ is painting their porch, but doesn't want to come over because "it's such a bother" to us. (Head -> desk. NOT A BOTHER! Also, it's Grandparent's Day, and you are my one surviving grandparent... please let me be bothered!)
All of that stuff is buzzing around, and there's so much of it that I often feel like a radio that can't tune into just one station - there's too much static, too much fuzz, and there's always some other faint voice playing over the specific thing you're trying to hear. And then there's how I feel which can not just cover up the sounds I'm listening for, but break in with it's on emergency alert tone if that's what it takes to get me to listen to it. It makes for a muddle, sometimes.
I keep practicing my breathing, though, in the hopes that I can sometimes settle on just the one thing: the hard part is figuring out which is the right thing. And not feeling horrible at the million or so other things that get left out, hoping that you're getting to the stuff that really matters, and that the stuff you're letting go can figure itself out without your help.
(And that makes it seem like I think I am the center of the universe, which I really don't. I just find it hard to figure out where to put my energy sometimes, and find it impossible to just not worry about the things I don't get to.)
Anyways...
Have a nice, deep breathing picture to help you through your day... I hope you all are doing well today.
via MissWallFlower
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.
Friday, May 01, 2009
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.
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