"I don't want the world to see me, cuz I don't think that they'd understand when everything's made to be broken, I just want you to know who I am"*

Day 13 : A Band or Artist that has gotten you through some tough-ass days

Dear City of Angels Soundtrack (Specifically songs 1, 2, 6,7,8, 13 & 14):

I've always been one for music, but can't remember any special allegiance to a particular band or artist. There's been a lot of tough times in my life, and music has helped me through them, sure enough. But never any one group, never any one artist that stood above the rest.

However.

Do you remember that period during my sophomore year of college, and the summer immediately following it, when my educational advisor advised that I think about a "career other than education"? When the resident advisor advised me that I would "have to live in a building without an elevator: everybody has to!" and that I wouldn't be able to get an earlier number in the housing lottery "just because I wasn't feeling well" ?

When two out of four of my sisters weren't speaking to me because I was ruining their lives by demanding that they not spray perfumes in the house, or because they had to be quiet over the weekends, while I was home resting? When my Grandfather died, and my alcoholic father was a jackass to me at his funeral?

When I really was so sick that I thought, for sure, I wouldn't be able to go back to school come the fall? And I was literally bedbound to the point that watching Jeopardy with my mother and Nana became the highlight of my day because it was the only time I could be involved in something that didn't require me to move at all but was still entertaining?

Yeah: that was a pretty tough time for me. And the tv was too loud and too bright and it hurt my eyes and my head, so I couldn't really turn there. And the radio would get boring after a few hours, or I'd get too fed up with the commercials. And there you were, sitting in a stack of my sister's CDs.

I managed to catch her on a good enough day that she said I could borrow you, and I think I kept you for about 5 years after that. But it was that first year that really mattered. That first year were I felt like "This is music that understands that not all the world is awesome and happy. Thank god." Because I really, really, needed something that wasn't sugarcoating it, and something that wasn't going to ignore the very real pain I was in.

Looking back, it seems kind of absurd that all those songs about angels and spirits and a cheesy Nicholas Cage/Meg Ryan movie could possibly have meant anything, but they did. They were just the right amount of melancholy for a girl who felt like the whole world was moving on without her, who was mourning the woman she was supposed to have been.

"the news that truly shocks is the empty empty page
while the final rattle rocks its empty empty cage
and i can't handle this"

Truth.

"For a break that would make it okay
There’s always one reason
To feel not good enough
And it’s hard at the end of the day
I need some distraction"

More truth.

"God has got his phone off the hook
Babe, would he even pick up if he could?"

Truest yet.

So thanks, purloined soundtrack from a movie that I only watched once and couldn't bear to sit through again (sad. Sad movie.): I appreciate the angst of your songs just enough to listen to you on repeat, endlessly, for the better part of a year. Life was kicking my ass, and (while it has not yet decided to stop) it was nice to have a partner in my malaise, somebody who understood that world was HARD, and SAD and it was ok to feel it. Thanks for letting me stew in my funk for as long as I needed to, because eventually I came out the other side (mostly).

*Iris, Goo Goo Dolls
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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

"My first language was shy"*

Day 11: Something you never get compliments on

I'm a little confused about this topic - I wonder if it's supposed to be something that I am so bad at that nobody would ever compliment me on it (in which case, it would be a gigantically long list), or something that I think I am good at but don't feel I get enough credit for.

I'm going to take the less-easy route here, and go with my second option.

I feel like I do not get enough credit - or hardly ever get complimented on - my ability to get past my natural shyness and actually say words.

If you say you are a blogger, people automatically think that means you're not shy: You're putting yourself - or your words, or your product - out for the public to see, so shyness must not apply. Certainly a blogger cannot be timid. But, oh, how timid I really feel, and oh, how much the term "shy" applies to me.

I have, in point of fact, been told that I am not actually shy - although why other people should think they're a better judge of how I feel about interacting with outsiders than I do, I can't imagine. If I talk about my anxiety level in dealing with groups of people, or the fact that if I were going to a party I would prepare little conversations in my head so that I could have something to say if someone dared to talk to me, it has always been received with surprise: "But you're not shy!" they say "You talk to everybody/ You're always doing something/ You always give your opinion on anything we're talking about!"

Right - That's partially true. I do go out of my way to do those things, to make myself open my mouth, but my natural inclination? The reason I always find a task to do or a specific person to latch on to? Is because otherwise I would be almost frozen with fear that nobody would even notice I am there. Or because I would be so scared that I would be stuck on the periphery of whatever is going on and that someone might notice me. And they might ask me a question to which I have no answer.


Here, on my (mostly) anonymous own blog page, words come pretty easily to me: I say what I want to say, hold back very little, and only occasionally find myself worried about the reaction to what I say might be. Even so, I have to consciously make the decision to get over an almost stupefying fear every time I sit here and open up that post screen.

That I am able to do so is - I think - mostly because of the very small audience I actually have. My considerate and loyal readers are awesome, no doubt. But, let's not fool ourselves, there are so few of you that I can not be intimidated by what your reaction will be to what I type. If we disagree, there will be no attacking mob - you and I will figure it out, I doubt there will be any marching off in huffs. In the rare instances that there have been commenters who really disagreed with what I was saying (like one comment on a long ago post about disability rights where I mentioned that having pets was essentially you telling me that I was not welcome at your house, and the pet owning-commenter vehemently disagreed that this was rude or inconsiderate in anyway), it has stuck in my mind and I have considered it again and again.

Here in our own tiny world, I also tend to forget that what I say isn't really a secret between us, but something that ANYBODY can see: I absolutely have to forget this when I am writing (did not even want to type the words right now), or else I would immediately be forced (by my fear of ... IDK being seen, or not being seen or something!) to shut down the site. When, for example, the comic book world suddenly started to come peeking in on what I had written about Oracle, I was both flattered and horribly frightened... You mean people can SEE ME???

It made me really consider what the hell I was doing, putting all my thoughts out here for all the world to read like that. Someone might think I was ... wrong. Or stupid. Or they might... gasp.. get clued in on the fact that I don't know everything in the entire world! This could be disastrous!!!

But I swallowed back my anxiety, and I took some time (ok, a lot longer than I would have liked, but I ain't perfect) to realize that putting myself out here in public like this is not going to be the end of the world - I have been doing it for five years now, and some people actually like the real me, so isn't it worth it to take the chance and keep clickety clacking all these little words and posts out?

In real life, my shyness/social anxiety/ awkwardness is even worse: There are no first drafts! There's no walking away if you've made an error (like forgetting somebody's name)! There's no "I will just read this, and then click away if I am uncomfortable or if people are being rude or if it is overwhelming"!

In other words, the real world, with all it's reality, is horrible for shy people.
Or, at the very least, for this shy person.

And it's not just because I am so physically different than everybody else in the room, because I know that I was shy even before I got sick, but it's so much worse now, because I can not melt into the background in a chair that makes as much noise as a team of horses, or when I have to ask extra questions about what we're eating (so that it doesn't make me sick) or when I have to excuse myself from the room because your perfume is making me nauseous: None of those things enable me to be discreet and low-key! And now people are looking at me, and Holy Crap that girl is totally going to talk to me, why isn't there a corner I can hide in!

I sometimes think that getting sick (or having a disability) and being shy are just not compatible, because there's so much extra work you have to do if you have a disability. So much more attention that you don't have a choice about receiving.

But, it's also one of the things that helps me overcome my shyness - finding the disability blogosphere is one of the most rewarding things I've ever done, and one of the places I feel most comfortable, and most willing to participate in group experiences (blog carnivals - who would have ever imagined?) And presenting my thesis on disability and children's literature in front of a group of my peers (gah!) led me to leading teacher's workshops about disability in classrooms and helped me to feel like I knew what I was talking about and that I had a valid perspective that deserved to be listened to.

But the shyness is still there, the anxiety is ever present anytime I leave the house or open up a blank page. (I think the only time I am not shy is with kids: Hello, Kindergarten teacher much?) I fill up silences with words, in the hopes that other people won't notice I'm so uncomfortable I want to run away. I do battle with the verbal bullies of my family at gatherings, baiting them and then stepping away, because I know they're full of hot air, and that if people are paying attention to them, then they are not paying attention to me. I seek out the rooms where the kids are playing, and designate myself as in charge. I find a corner and park myself in it, and then hope against hope that somebody will care enough to wander over, and that, when they do, I'll be able to participate without showing the bashfulness that might overtake me at anytime.

So it may be that my shyness hiding skills are so advanced that people don't notice them (I'm a shyness ninja!), but that's something I don't get a lot of compliments on, beating back that almost constant inclination to just sit and not say a word, because what if that makes somebody look at me, holy crap! and actually put myself - in words or in physical space - out there.

And it's damn hard, I'll tell you that.

*Al Pacino

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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

How poor are they that have not patience! What wound did ever heal but by degrees?*

Day 11: Something people seem to compliment you the most on **

I seem to get the most compliments on my patience. People are all constantly telling me how patient I am. Which makes me think that they don't really know me at all, because I don't think I have hardly any patience at all.

Well, that's not exactly true, because I do have patience with little people. When it comes to kids, I can put up with just about anything... until I can't. But my limit is pretty high, and often, I'm the last one standing when it comes to waiting out a tantrum or listening to their latest complaint about how unfair some rule or another is. Pretty much nothing they do bothers me at first, and it takes a lot to push my buttons, because I figure "They're kids, they're just learning, or just trying to figure it out" and I can cut them a lot of slack while they work on it. (Which does not mean that I'm a pushover - I may have a lot of patience, but I'm also a stickler for rules, as any of the munchkins who've been under my care would surely tell you.)

But when it comes to grown-ups? I mostly figure they should have grown out of their tantrums - whatever form they might take - and so have a lot less patience for their poor behavior.

But I've been getting the "you have so much patience!" compliment a lot lately especially since I've been working with Grandmother and all her various therapist type people... Uncle Jack (who has very little patience... for anybody) is constantly telling me how much he appreciates that I have the patience to put up with them (and Grandmother's ... self-willed-ness) so that he doesn't have to. It doesn't really take that much though, so I think that's more a measure of his lack of patience, than my abundance of it.

But I'll take any compliments I can get, so let's all pretend that I am awesomely patient, why don't we?


*William Shakespeare, Othello
** Can we please stop ending sentences with prepositions? It's hurting my grammar-geek soul.
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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

The I in illness is isolation, and the crucial letters in wellness are we*

Day 10: Someone you need to let go or wish you didn't know

I wish I didn't know so many doctors. Nothing personal, but I could really do with knowing less of them, (or none at all?) and, today, one in particular. One who is doing a whole lot of nuthin, and contributing such gems as "stress can cause hives, you know" or "you're so young to be in a wheelchair" but nothing, that might be considered even slightly, you know, helpful. Not a substantive suggestion in the bunch, just a lot of babbling about "if it gets worse, maybe you should come in and see me..." Even as she was implying that coming in to see her would net me absolutely nothing in the way of a result.

And after sixteen years, I think I definitely need to be quicker to let go of doctors who - while not perhaps actively doing me harm - are also not helping me. Regardless of the fact that it is ridiculous and annoying to have to start all over again with a new doctor, who wants to repeat all the tests you've already had three ways till Sunday. I need to realize that - while there might not be any answers to be have, when you've got such "mysterious" maladies as CFIDS - if you're not helping me, you're hurting me. There's a lot more that they could/should be doing, and if I have to keep searching, I'll keep searching.

So, you're on notice, current primary care "physician": If you're not more helpful the next time I call (and just a free hint for you: Saying "Well, have you tried Tylenol?" after I've already told you that I could take an entire bottle of the damn things and they might as well be M&Ms for all the good they do me is Not. Helping.), then I'm letting you go. For me.


*Mimi Guarneri, The Heart Speaks: A Cardiologist Reveals the Secret Language of Healing
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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

"Are you lonesome tonight, Do you miss me tonight? Are you sorry we drifted apart?"

Day 09: So today's topic is about people who drifted out of your life, and I suppose I could mention any number of specific people. People I miss, people I'm not sure how I lost touch with, people who just... went away.

But instead, I want to be as honest as possible here, since that's the point of the whole damn thing, and say that I? Am not good at keeping in touch.

Oh, I pretend to be - or, more accurately, I hope to be: I'm one of those annoying people who has a presorted box full of cards to choose from whenever the need might arise. I have fancy stationary, and pens that I know are good for letter writing, and I sometimes spend entirely too much time looking for pretty, different, or interesting vintage postage stamps on E-bay (don't judge). I keep a meticulous address book, as well as a perpetual calendar with just about everybody's birthday noted in it.

But here's the thing: That address book? Is still packed (it's been over a year, and I can't find the damn thing). The calendar? I don't actually need it, because dates are things that stick in my head. But even with the dates there in my head, most of the time the card never gets taken out of the box and filled out. Where it does no good whatsoever. And I usually don't wind up buying the pretty stamps, because I have no money.

In my fantasy world, everybody I know/love gets a card on their birthday, and a letter when they're sad. They get "just thinking of you" and "cheer up, you can do it!" e-mails, and pop-in visits. They get phone calls that last for hours, and we go out to lunch a lot.

In reality, keeping in touch is a road to hell that is well paved for me. Good intentions abound, but I hardly ever follow through. In person visits are very few and very far between - mostly because of my circumstances (I'm sick; they have dogs; I don't drive; I am hacking up a lung) and the fact that we all have our own lives. Phone calls are ... tricky, because I don't technically like the phone. Which is to say I avoid it if at all possible.

I often say to myself "I should call/write/e-mail this person because it has been forever since we talked!" and then I go about ... not doing those things, and more time passes, and it builds up in my head ---- You haven't called; you are a horrible friend; you haven't seen her or met her baby and it is the baby's fourth birthday! At least send a card, you terrible person you! - until it gets to the point where I realize I MUST CALL NOW or I risk losing some important connection to a person I actually like, but just haven't been able to keep up with. At which point, I usually do not call because I still have a hearty dislike of the telephone, but instead I will send an quick e-mail to say "hi" so it doesn't seem like that big of a deal to me that I have been out of touch so long.

All this is to say, that if people drifted out of my life, and some of them did, I take at least partial responsibility.

And I miss you.

Just so's you know.

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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

Ching-wah TSAO duh liou mahng

Day 08: Name someone who has made your life hell, or treated you like shit

You can click any of these links if you're interested in reading about the people who have done me the most wrong - my own personal demons, the PeopleUpStairs (AKA PUS). I don't recommend it because it's depressing, frustrating, and rage-inducing. (That last one really sums it up, IMO.)

TL;DR: These people are awful and horrendous, and hurray! Not In My Life ANYMORE!

Instead of dwelling in my past misery, please to enjoy these fabulous and completely not at all related links:

You jaundiced jumped up, vercordiously pusillanimous piffle. Upon reading this, you are probably muttering something like "Ho ho, sour grapes." You have a point. But my rejoinder, vinegar face, is what hope did those grapes ever have while you live and breathe?

How can you be so blindly unaware of the loathing and revulsion you engender wherever you go? I have had fantasies about attacking you with a machete, but I dare not.

Have you any idea how truly offensive you are, have you any idea at all? Do you know what an idea is? Sorry. Unfair question. You have singlehandedly, completely, enthusiastically, maniacally, with gusto and lip smacking delight, stovered any advancements made in the human condition over the last six million years. Congratulations. You must be so proud. If you once had any redeeming quality, it has been strangled and garrotted by your other brutish traits.

Why is it everytime I think of you I think of pus? Sea slugs are scum sucking invertebrae. Land slugs are slimy mollusc-brained cabbage eaters. But you are just PUS.

If everything in this world has some purpose, some grand plan behind its existence, then yours surely is to show everything else, whether it be a slops bucket in a fried chicken stand, or the gunk behind the fridge, how fortunate it is not to be you. This letter has come to end. But it is to my eternal disappointment, my bitter regret, that you have not.

That wordy and wonderful ode to the people who have done me wrong is brought to you by BlueSwami's hate letter generator. You can click and create your own, if you'd like.

Also of interest, (if you happen to be a geek) are these inventive Chinese curses and their pronunciations, should you choose to learn them. If you'll excuse me, I have to go practice saying the title to this post, just to have it in my back pocket.

PS: If you've never seen Firefly, and it's follow-up movie Serenity, I tell you that you MUST.
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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

Exhibits A-D

The whole bunch of cousins
Originally uploaded by bbackprple

Day 07: Someone who has made your life worth living for

(Bad grammar aside, and allowing that it is both totally expected and very cliche.)

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

"Isolation is the sum total of wretchedness to a man."*

Day 06: Something you hope you never have to do

Be last.

I have a lot of other things I hope I never have to do, but being the last one left is the ultimate on my "hope that never happens" list. Isn't it on everybody's?

*Thomas Carlyle

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

"Parenthood is pain and sacrifice and...

the extinction of free time and the postponing of dreams and the scrabbling in the folds of the couch for spare change and sanity, peppered with flashes of pure joy."*

Day 05 : Something you hope to do in your life

This one is easy. Besides "get better" (however better might be defined, but preferably the words "miraculously" and "completely" should be involved), my major hope has always been to be a mom.

Seems like it shouldn't be the most outrageous hope in the world, but it is the one I'm most afraid might never come true. It's even less frightening to think I might never get better, because, at the very least, I've figured out how to get by being sick. I've never really figured out how to get over not yet being a mother.

I don't talk about it a lot here, because it's so hard to talk about, and because it's one of those topics I'm not capable of expounding on with any sense of clarity at all. It's all emotion, and it sits, like a huge lump in my throat. I'm afraid to utter even a peep about it, lest the entire lot come tumbling out in a torrent of tears and ramblings and little hiccups.

So I'll just say that that is something I hope to do in my life, and, should that hope prove impossible, I don't really know how I'll cope. (I will cope; I am just not really sure how I'll manage it.)

So negative: gah! Was I supposed to say "mountain climbing" or something? Because mountain climbing sounds like torture, and I don't know why anybody would want to do that.

Unless it's your hope, and then: more power to you!

*Kate, Sweet/Salty 9-10

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

"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

"Monsters are real, ghosts are real too. They live inside us, and sometimes, they win."*

This is my third attempt at this post - Damn: this truthiness stuff is hard!

I need to forgive myself for not growing up to be the woman I'd hoped I'd be. In so many ways.

I need to forgive myself for that one time I chickened out - for all the times I chickened out, held back, let myself be silenced; because it could have made a difference.

I need to forgive myself for forgetting important things, because it would have meant something if I'd remembered.

I need to forgive myself for not being truthful when it mattered most, because I hurt myself and some good people along the way.

I need to forgive myself for postponing things I don't want to face, because it always bites me in the ass.

I need to forgive myself for not answering the phone that night, because I couldn't have known.

I need to forgive myself for the times I only live a half-life, because I want to be more, be better, than that.

Oi, I have a feeling the next twenty seven days are going to be a tad more difficult than I had thought.


*Stephen King

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

30 Days of Truth, Day 02

Thirty Days of Truth, continued: Day 02: Something You Love About Yourself

This is a considerably more difficult topic, and I hate to admit that I am struggling to come up with something, so early in the thirty days. So I've been procrastinating this post for most of the day, while I voted, and read stories with Lil Girl, and talked with Grandmother about the second anniversary of her youngest son's death and chopped up vegetables for stew. I put it off while I sent Mum home to take a nap (even though I could have used one myself), and spent forty five minutes browsing for birthday cards and tried to figure out how to word a particularly touchy e-mail. And, all the while, I let the topic simmer on the back burner in my brain, hoping that something would eventually occur to me. There had to be something after all, that I love about myself.

And then, suddenly, it was there: I love that I care. Just care, full stop. Full throttled, hold nothing back kind of caring.

I love that I care - many times to excess, often times without wisdom or doubt, and almost constantly with my whole heart. I love that I continue to care, even when it's difficult or challenging or just plain ridiculous for me to do so. If you're in my heart, you're in there, and that puts you on my list. If you wind up on the list of people I care about, then you're pretty much stuck there. Forever.*

Case in point? I am, literally, still friendly with almost everybody I ever went to school with - including my first college roommate who smoked pot in our room every weekend so that I had to go home just to breathe. And not just Facebook friendly, (which wasn't exactly around when I was going to school but is a great tool now,) but "I'll drop you a note or a Christmas card even though I haven't actually seen you in the past 15 years" kind of friendly. "Call me if you need somebody to watch your kids, even if I've never met them" friendly.

I care about the people in my life even when they don't exactly reciprocate, even when I don't have the energy to do anything but send them happy thoughts, even when I have other things I should probably be devoting that energy to.

And it isn't just "my people," Those immediately within my family and friends get the bulk of my time and attention, sure, but that's how it should be. Still, though, I also care about my community and my commonwealth and my country and my world. I worry about not being able to be as active as I can be when it comes to advocating and activism, but I write letters and turn off lights when I leave the room, and try to convince people that voting is important to their lives too. I participate in the limited ways that I can, but even when I can't show up, I don't stop caring.

Here's an example of the kind of "cries at commercials and smiles at random babies" type of caring I've come to appreciate in myself: something that other people tend to view with a lot of eye-rolling, but that I've come to love.

Last night I was laying on the couch in the living room, reading my book while my uncle was watching the baseball game on the television. I am not a sports person, and have no real interest in the games, but I was also too tired to get up and come into the other room - my spot on the couch was warm and comfy, my sofa-bed was neither and held little appeal. When the game was finished, and the cheer of the crowd went up, sentimental me watched with a full heart as the winning team celebrated and jumped all over each other. And then, when the camera angles switched, I was reminded of one of the reasons I don't like sports - somebody has to lose.

And watching that team (IDK; was it Texas? I think it was Texas) slink back to their bullpen, hopes of victory and World Series fame fading into nothingness, I felt for them. Even though I couldn't be bothered by to note who was playing, I still cared that those guys, who'd probably dreamed of playing in the World Series for their entire lives, had to deal with the fact that their dream had ended in disappointment. This is not the first time that this has happened to me - which can be a sore spot to your family, if the dreams your Red Sox have just crushed belong to those who wear the pinstripes - but it's one of those things that make me, me.

Even when I'm most angry with someone - usually a sister - I have this part of me that makes me think: "Oh, but how hard it must be for them!" There's an empathy in me that I've sometimes wished I could be shed of (you try being mad at somebody - especially if you're right! - when all you can see is how miserable it's making them), but that now I truly value. A piece of my heart that, even if it has had good reason to harden, just refuses to. And I used to be ashamed of it, and I've certainly tried to hide it, but it's something about me that I love, because I can't imagine where - or who - I'd be if I managed to shut it off.

Just call me tenderheart.

*I don't make enemies easily - and can think of only one particular group of people who I actively dislike, and (if you've been here any length of time) you know that that animosity is well earned.


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

30 Days of Truth, Day 01

So here's my first official 30 Days of Truth post, which I found via more than one blog, but I'll search my Google Reader and post a few links, if you'd like. I'm sure you've seen them around, and some of the more stellar responses have gotten me to start thinking on the topics as well, so I figured - good topics? check; guaranteed NaBloPoMo posts everyday? Check; Deep thoughts? Also check. So here we are.

Day 01: Something you hate about yourself

Ugh. I feel like this list could go on forever and ever, and I hate that, for sure: that I'm not more happy with who I am or how I look or more comfortable in my own skin. Whenever I'm reading a book and a character is described just that way - "You could tell she was comfortable in her own skin" - I always think "But how? How did she get comfortable just being who she was? How is that even possible?"

I know it must be possible - I think I know enough people that are just who they are and that's that to know it is possible. But it seems like something that's possible for other people . Not for me. Maybe, some day. But if I'm being honest, I don't really think so. I don't really believe that I'll ever just be happy with how I look, or how I act. Or -if not happy, exactly - but happy enough.

Happy enough not to hate that I need to ask for help for things that I "should be" capable of doing. Happy enough not to hate that I can't drive myself (or walk myself) from point A to point B and have to depend on other people all the time. Happy enough to not hate the way I cry when I'm arguing with someone and how weak it makes me feel. Happy enough not to want to burn the piles down around me rather than hate how I procrastinate dealing with them.

Happy enough not to cringe when I see myself in the mirror in the morning. This is a new one for me, mostly because, at my house, what few mirrors we have are all at standing up person's eye level. If I want to look in the mirror, I have to make an extra effort, so I don't often look in the mirror unless there's a reason for it. But here at Grandmother's house there is a huge honking mirror in the little bathroom. I'm talking about an entire wall's worth of vanity mirror, so that if you were standing in the middle of the bathroom floor and stretched your arms out to the side to touch the walls (which you can do because that's exactly how small the bathroom is), you'd be able to see the whole thing in the mirrors. Which also means that you can see yourself from just about anywhere, including sitting down. And this is the only bathroom I have access to, and so, when I roll in there first thing in the morning, I see myself.

And I find that I am often not pleased with how I look. I even thought "holy crap: that's what you look like today. Ew" the other day. "Ew." Was an actual thought I had about myself, and it made me realize how harshly I judge my physical appearance. It's been on my mind ever since.

I knew I had issues with my weight - being on steroids and the Lyrica and god knows how many other drugs has definitely screwed with my poundage - but it usually only bothers me when I have to go shopping for something nice and nothing nice fits over my boobs. Or when I'm in a group picture - particularly one with all my sisters, and I realize I could put three of them together to equal me (almost, anyways). But, for the most part, it doesn't enter my mind - the good thing about having a body where you have to be measuring things against pain or exhaustion or sick levels in matter of importance is that you realize that being heavy does not equal the end of the world. Sure I'm a little bigger than I'd like to be, comfortably, but it doesn't physically hurt, so it moves way down on the list of things that concern me on a day to day basis.

It hardly ever even makes it onto the list, to be honest with you. I'm not generally embarassed by it and see no reason why I, or anyone else, should be - so it worries me that I can think so poorly about my appearance.

And it's not just the weight - it's the stuff I don't have the energy to devote to fixing: I'm lucky if I ran a comb through my hair twice last week (clip it up and be done with it is my usual motto), I don't wear makeup (although I could often use it) or nice clothes (nice and comfortable are apparently fashion's version of oil and water). I look... tired. And worn out.

And - even though I am tired and sore and worn out - I hate that I look that way. And I hate that it matters to me how I look at all, because if you had asked me a month ago, when I wasn't having to face myself in the mirror every day, I would've said it didn't bother me at all. I don't want it to bother me at all.

So I'm trying to look myself in the mirror now and think at least one positive thing, even if it's just "Look, you made it all the way in here, and you didn't think you were going to get this far today, so that's something" or "You have your mother's eyes, you know, so if you can't say those aren't pretty because she has gorgeous eyes. It's ok that they're tired today, they're still her eyes." Or - as was the case one day last week - "We are not leaving this room until you can think of something nice to say to yourself, you stubborn ass. Because if Lil Girl looked at herself in the mirror and thought "ew," even once, your heart would break, and the least you can do is figure out how to make the same be true for yourself."

I hate that I haven't figured it all out yet, I guess is what I'm saying.

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

Some anniversaries I may have forgotten to mention

Well, that was that: October. I can't believe yet another month has come and gone, when I am still stuck somewhere back around April, hoping that the rain will finally stop and spring will bloom. In reality, we're preparing for the cold all over again, and hoping that the heavy snow they are predicting for this season is inaccurate - As usual, I am way, way behind.

I've been so busy here at Grandmother's house that I haven't written about my sick-a-versary, or my blog-a-versary at all, but trust that I have forgotten neither. This is my 16th year of being sicker than I'd like (of course, anybody who's sick at all is, most likely, sicker than they'd like), and the anniversary of that first debilitating, out of nowhere and never gone back to nowhere illness still strikes me hard. Because one day I was fine, and the next day I was not. And I haven't been since. It's hard to remember, even when things are going ok-ish for me health-wise (as they are now), just how different my life became, and how suddenly.

But, like I said, this year's anniversary finds me with no new major downturns in my health, so that is really all I can ask for at this point. I'm grateful for the level of activity I've achieved, which, at certain points in the past I would've never thought I'd attain. Even if they're still significantly below where I'd like to be (say about 70% below where I'd like to be), any progress is good progress, and I think that this past year I've been most surprised by just how badly you can feel - how much pain or exhaustion or stress your body can be feeling - and yet you still get through the days: It seems a lesson I am loathe to continue learning...especially since I am constantly hoping that this - whatever this may be: pain, hours without sleep, post-surgical infections - is as bad as it can possibly get. Since that is apparently never true (it can always be/get worse), I'm glad that I keep meeting the challenges in ways I never would've thought or expected that I could.

But I also have to think of the positive things that have happened in my life over the course of the past 16 years, and know, that if I had changed this one thing - my illnesses and all of their various effects - I would have changed everything else. And so, holding the little people in my life as close to my heart as I do, and knowing how much stronger some of my relationships have grown because I've had the time to devote to them, and thinking of all the ways I wouldn't like to be any different than I am right now, I have to be glad that we can't change our past, since the temptation might have proven too much for me, and where would I be then?

I also missed acknowledging another pretty important anniversary: The end of September marked my fifth anniversary here at Never that Easy. I think, for me, whenever somebody says "It's been X number of years since Y", I always think that it has simultaneously been a much longer time than that and a much shorter time. It certainly feels as if I have been writing here for much longer, because of the people I've met, and because of how much it has come to mean to me. But I can also recall, very clearly, trying to come up with a damn name for the blasted thing that A) didn't sound ridiculous, B) wasn't already taken and C) I could use anonymously, as a pen name. (And even then, I screwed up on B and managed to hijack someone else's blogger name right off the bat: It was not an auspicious beginning, I can tell you that.)

For five years, I've written about most of the things in my life that are important to me - I won't say "all", because there have definitely been a few times I've been either too embarrassed or exhausted to share, and other times when I just kept things to myself - and it's been an overwhelmingly positive experience for me. I haven't made a dime doing it, but never figured on doing so - and, that said, I've still lucked out a couple of times when it came to free goods: way back when, Snapfish gave me some free credits just because I'd said something nice about them on my blog. I've never become part of the "A-list" (or B or C...) blogosphere, but I never meant to do that either: I just hoped that what I had to say would find somebody that it made sense to; somebody who understood enough, or thought it was funny enough, or wanted to know more enough and would stick around to hear me say it.

And in that area, I've more than lucked out - I managed to get people to read almost all of the posts - sometimes it's just been one or two, other times more like a dozen or two, and, once or twice, about 1000. And I've wound up with a wonderful core of people who care, who pay attention to where I am and what is going on in my world, and who let me know that they are out there. That's you, if you're wondering.

I know I wouldn't keep doing this, if you all didn't keep showing up and saying so. I'd keep writing - I always have, I always will - but I wouldn't keep putting little (or gigantic) pieces of myself out into the world like this, hoping. Hoping that somebody else feels the same way about something that I do about something, or feels the opposite way, but still cares enough to argue about it. Hoping that I'm not the only one who gets bothered by some damn annoying thing. Hoping that there are happy things happening even when I can't see them. Hoping that there's more to me than just one part, and that people can appreciate them all.

So thank you for showing up, and for making these past five years a lot less lonely. I'm not planning on going anywhere, for the time being. As a matter of fact, tomorrow will find me participating in my fourth NaBloPoMo, and I am seriously considering doing that meme that's been floating around about the 30 days of truth. It seems like another step in making connections - knowing that I'm being honest with all of you is something I strive for here, even when it hurts - and I'm looking forward to the challenge of it.

Plus? It gives my tired brain a little nudge in the direction of writing something, which is often the hardest hurdle for my exhausted self to climb over.

- A lot of these bullet points were supposed to get their own posts, but I am still at Grandmothers; sick as a dog; and my brain is full of a mushy type substance rather than brain cells. So, as opposed to leaving this un-updated and telling myself that I'll get around to it soon, I'm going to just stick to the bullet points. Enjoy!

- Yesterday morning, after suffering all night with a throat that got more and more sore as the hours passed, I popped out of bed because there was an alarm ringing somewhere in the house. I rolled over to the couch to ask (sleeping) Grandmother what the noise was, only to find that a) I had no voice and b) she didn't have her hearing aids in. Later, when U J got up, I found out that his hearing problems (he gets these weird ear things that sometimes make his hearing less than perfect) had gotten worse over night as well. Please tell me how you explain "a loud alarm! Was ringing! Is there a god damn bell or smoke detector or something????" to people when a)you can't imitate the noise and b) they can't hear it.

- There is no way to talk about the fact that you can't swallow without falling into an immediate "That's what she said" joke. I learned this after I got my tonsils out, but I think I must have forgotten. Now, every time I have to tell the doctor that I can't swallow, I have to bite my tongue.

- Grandmother is doing fine: Now that her only remaining therapist is the PT, whom she likes and who is trying to teach her to use the cane, she sees no real reason to continue using the walker. Even though, you know, she's supposed to be. Since her balance and strength are still off. She does her exercises, she practices with the cane, she says all the right things when the PT asks, but using the actual walker to get from, say the living room to the kitchen? Nah: it's "too short a trip" (even though it is the length of the house). The only time I can get her to agree to take it with her, at this point, is at night when she goes to bed: The PT calls those hours the "danger hours", the times when another fall is most likely to occur, and I think that's why she takes it upstairs with her.

- But still, she doesn't always use it... the den (where my sofabed of discomfort is located) is directly under her bedroom, and I can hear her moving around up there in the middle of the night, going to the bathroom without dragging her "friend" along for the ride.

- The irony in me - the girl who literally crawled from one place to another rather than 'give in' and use a wheelchair - trying to get someone else to use a mobility aid is definitely not lost on me. (Or my mom, who thinks it's pretty amusing, as she was the one having to convince me to use the chair all those years ago, even though I was literally falling down all. the. time.)

- I am very behind on my internet news, but can imagine that this isn't the only place you are going to read the following sentence: If the god damn politicians don't stop with the ridiculous campaign adds, I will not be responsible for my actions. Two additional notes - the amount of mental health ableism in those ads is unbelievable (In Massachusetts, there is one particular ad that flat out calls the opponent "insane" as well as "crazy" and a "kook.:) and, come October 2012, I am not going to watch any amount of unTivo-ed TV. I will not be able to watch what they're going to say about Obama.

- On the positive side, in the past month I've watched all three seasons of Veronica Mars, the (sadly singular) season of Firefly, and a good portion of Buffy the Vampire Slayer online. Of course, my home DVR is full up, but after I buzz through some Daily Shows and Colbert Reports, I should clear up a bunch of space.

- There's a million reasons why I'll be home/here this weekend (see above, see any link regarding health on this entire site, etc), but I still kind of wish I could go to the Rally this weekend. (And yes, I also have issues with the problematic name for the Rally: it was not necessary to call it the "Rally to Restore Sanity" - and therefore continue the stereotype that crazy = illogical and ridiculous and not what all of us "normal" people are like. I take issue with that and think it was a stupid move on their part, for sure.) I still wish I could go.

- Today, Lil Girl ran a race against two invisible girls, an invisible cat and an invisible dog, and she lost 3/5 times. If that isn't funny, I don't know what is.

Report!

Eleven days of not posting is hardly a record for me (unfortunately), but I don't like that it's been so long nonetheless.

Things here are still progressing: Grandmother has one more visit each with the VNA (Visiting Nurse: comes to take blood, monitor her vitals, overly explain simple things as if Grandmother is either a child or hasn't been taking a particular medication for the past fifteen years), HHA (Home Health Aide: comes to help Grandmother take a shower, has introduced her to the joys of conditioner specifically made for curly hair), and OT (Occupational Therapist: tries to convince Grandmother that her entire way of moving her body - quickly, unbalanced and without her walker - is putting her in danger. Even though she understands this, it does not mean that she makes the changes the OT recommends - except when the OT is here watching her) and by the end of this week the only outside treatment she should still be receiving is her PT (Physical Therapist: "The only one whose said anything that's actually helpful"). While I am looking forward to things slowing down here -


Quick Aside: Why is it that you are expected to be your most active during or immediately following a serious health related incident? I first noticed this phenomenon after a hospitalization about 13 years ago for pneumonia - when the nurses insisted I get up and walk around, even though I told them I would pass out if I tried to walk around normally. Of course I did pass out, but I was still supposed to try it every couple of hours. And then again, after I had my appendix out, the doctor decided that would be a good time for me to "get back on my feet" and prescribed PT, even though I was so sick following the surgery that I couldn't get out of my chair without crying. And this time, post TIA, my Grandmother is being required to exercise more than she has in probably the last 10 years - exercises and walks and constant visitors that make scheduling a nap difficult. Why do we make it so that the people who need the most rest barely get any at all? And why don't therapists and doctors and such take your previous (to incident/illness/reason that they are there) activity levels into account? /rant

- I am also kind of leery of what it will mean once nobody is coming in. Grandmother works best with the promise/threat of having to report back to somebody; once those people (she calls them her "drill sergeants," of which I am (sadly) one, because I have to constantly keep reminding her to take her "friend" the walker with her. She hates that thing with a burning passion) are no longer here to provide that threat, how is she going to do? It's a worry, but she's also scared of not getting any better, so hopefully that'll keep her motivated. Plus, I'm not leaving yet. (And even when I do, we'll set something up so that I can be checking up on her more... I hope.)

But that's our progress report: On the mend. Definitely.

I'll hopefully be back later to talk a little bit about something else, anything else, but since I've been here, a lot of the rest of my world has been put on hold, so I'll have to really think of something that doesn't involve therapists of any kind.

Miss you, internets: thanks for keeping me (semi)sane.

Breathe in....

It's 11:55 and Grandmother is upstairs in the shower right now. On her own, which I am not entirely comfortable with, but it's not as if I'm going to get her to skip it. (grr. argh) I am more than a little worried, but we'll see how it goes, maybe all will be fine and dandy, all will go well, and there will be no problems (fingers crossed fingers crossed). She promised to leave the door open, and U J is staying upstairs just in case, but I am still wary. (OK, what is about three levels up from wary? Anxious? Nervous? Terrified? I'm that.)

It's not that she's not been doing well - she is doing exceptionally well. She's meeting or exceeding expectations just about across the board (there's the kindergarten teacher in me rearing her head again), but the two true deficits she's still having are in balance and strength. Those are deficits I know something about, unfortunately. Which means that while U J seems to be perfectly fine - not worried exactly, but not nonchalant either - about this whole showering situation, I'm a bit more skeptical. Because showers are my downfall, people, as you well know if you read this site. And because if you combine stubbornness and an inability to just ask for the help you need (particularly if you need that help while naked) with a loss of balance and strength control, then problems are more than likely. They might even be inevitable, in the longer run.

Hopefully not, but these are the times when I am most frustrated by my disability. The times when my illnesses are not just illness but clearly dis - abilities. Because I am physically unable to climb up those stairs to help her shower in the first place, so we can't avoid the situation in its entirety. Because I am physically unable to climb those stairs and wait around outside in case she needs my help (which she'd be more likely to ask for than U J's, since I've already seen her naked about a million times by now) with something small, thereby avoiding larger problems. Because I am physically unable to rush up the stairs if she hollers or slips or falls: If I started crawling my way up right this minute (at 12:05), it would take me at least 20 minutes to get up there, and when I got up there, I would be too wiped out to do anything else - I'd need at least an hour's worth of recuperation (by which I mean lying on the cold hard floor, being as still as possible) until my pulse slowed down enough or my blood pressure came back up enough or my muscles would cooperate enough for me to crawl my way to the bathroom floor. So, if she should need my help, it'd be a good hour before she'd get it, just physically. And yes, of course, in reality, if it were just she and I in the house and she needed help, I would not attempt to climb the stairs, I would immediately call 9-1-1, because they'd be able to get to her much faster than I could, but that really just proves my point even more: I would be one flight of stairs away from her, and the EMTs four blocks away could get to her more easily than I could.

So those are the times when my disabilities are shown as clear disabilities, and the times that they are most frustrating.

Alternatively, of course, is the notion that, if I were not sick, I would probably be employed, and if I were employed, I would definitely not have been able to be staying here this past month, so while I would, in that instance, be physically able to climb the stairs, I would (most likely) not be around to do the climbing or even know the climbing was necessary. But this post is not so much about playing "if only, if only".

I'm just trying to explain the very real frustration I'm experiencing right now: Not a "but what if I wasn't" type of thing, more of an example of "well, this is my reality." (If that makes sense)

And now it's 12:16, and the water has long since shut off, and Grandmother is coming down the stairs, cleaned and dressed and smiling. Safe and sound, happily. She says the entire operation went well, and that she remembered all the instructions the Occupational Therapist had given her (about sliding in and out on the shower chair instead of attempting to climb over the edge of the tub, or having U J set up the shower head and chair before she gets in). My worrying was thankfully unnecessary, and I'm glad I was able to distract myself by talking to all of you.

:exhale:

"Moo!"

Just a little smile for your Friday night. Hope you've got something to look forward to this weekend. :)

A happy update, for some change of pace

Hey everybody - just a quick not to say that things are going well here. Grandmother is home, and much improved. She's making me a little crazy because she gets up and walks away without her walker (which they've given her because her balance and leg strength are still chancy), but other than that, she's being a model patient. She's got a little bit of forgetfulness (which is frustrating UJ to no end, because of the repeated questions), and she's pretty tired all the time, but 20 days post TIA, her improvement is pretty remarkable, in my opinion.


I'm still staying here, for a number of reasons, including my own piece of mind. Ok, mostly for my own piece of mind. She's doing so much better, but she's still "kinda wobbly" (as Thumper would say), and both she and UJ seem a little overwhelmed by all the VNA / OT / PT appointments and evaluations, her new medication list, and all of the things that go into a recovery like this. Even though I know just about zero about recovery - as I have never achieved it myself - recuperation and readjustment following hospital stays and times your body has not behaved itself are pretty much my speciality, so I'm glad to help, however I can.

Right now I am concentrating on making sure that the right questions get asked, making sure that someone remembers the answers as well as I think they should (Hint: write everything down!). On insisting that the visitors treat my grandmother with respect - you wouldn't believe how many of the people just come in and start poking at her: How about you introduce yourself? How about you ask for permission? How about you remember that the patient is a PERSON? That they leave their contact information and a schedule of upcoming appointments (even if it's tentative, at least give us a day you might be coming back).

I've talked UJ through installing grab bars in the tub (even though it's upstairs), and reminded him that the PT suggests a bigger shower chair and a handheld shower hose (both are now purchased). I have explained how much better a pill box system would be than their old "Let's look at this list 16 times a day" system, and then watched UJ try to explain it to Grandmother this morning. UJ straightened the brick walk in the back yard and installed a handrail on the two steps out there (even though I tried to get him to use concrete so it'd be smoother, I got vetoed there). I've finally talked them into rolling up the rugs so she'll stop having to worry about them (That's not getting done for a few days, though, so I still have to watch her getting caught on the corners till then). I sit in my chair and anxiously follow her up the stairs with my eyes when she goes up for bed at night ---> She's supposed to wait for UJ to be behind her, but when he carries the walker up to put it at the top of the steps, she starts right up anyways. Another of my suggestions, that she take the pull out couch down here, was swiftly shot down and will not be entertained. I put the cream on her back every day, and watch as the rash she got from the unusual hospital detergent starts to finally fade.

Besides that, Grandmother shouldn't be left alone until they hook up the lifeline thing (even SHE remembers the "I've fallen and I can't get up" commercial: it was the first thing she said when they suggested it), so I'm still being useful that way - at the very least UJ can run to the supermarket and get something for dinner without worrying that she'll be hurt and unable to get help. Yesterday he went to mass, giving me the whole "I have my cell phone, you know how to dial 9-1-1, these are the signs of a stroke, are you sure you'll be alright?" speech, even though I am 31 years old. I understand his nervousness though: I don't know how I'll manage when I go home, because he hates the phone, almost as much as he hates asking for help, so if I'm not Right Here, then I know that he won't call and say he or she needs something.

So I'll stay for now. Even though I miss home, and my people, and my big comfy bed, and Lil Girl days, and my non-tivo tivo. But I don't want to leave till I'm sure they can manage, or until I absolutely have to (because I can't manage anymore), which ever comes first. (Although I am definitely going home for a shower tomorrow, come hell or high water.)

Hope your weekends have gone well, and that your Monday finds you ready to face whatever comes your way.