"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.

A learning experience is one of those things that says, “You know that thing you just did? Don’t do that"*

I can't believe I've left this post up for this long, since, in my head, I've written about thirty six posts since last week. Unfortunately for my blog (or perhaps fortunately, since my brain isn't exactly in tip top condition lately), my computer doesn't travel as well as I would like it to, and there's no internet connection at the rehab. I don't know what their problem is, since, if I were using their facilities, I would definitely need the distraction.

Anyways, my grandmother is doing very well, thank you: She's got a discharge date set for this Thursday, and her improvements have been quite great and quite quick. She still needs to use the walker, which is absolutely going to be a point of contention once she's home and isn't on her best "let me out of here/ see what a good patient I am!" behavior, but we'll deal with that when we get to it. In the meantime, she's doing really well. (Thankfully.)

There's been a lot of other family drama - some of which I can't talk about here and some of which I just don't have the energy to go into right now - but I have been trying to keep what energy I do have focused on caring for my grandmother and putting it where it can do the most good.

As for me, I'm ... I don't even know how I am. Up in the air, like one of those little juggling balls, going round and round and up and down under somebody else's control. During the (not continuous, grand total of) forty-five minutes I slept the other night, I had a very vivid dream of myself, sitting in my uncle's car in the passenger seat. We were making the twenty minute trip we make four times a day (twice up, twice back, because he refuses to eat any place but home, and don't even get me started on that), traveling the now-familiar route. In the dream, I seemed normal and everything was fine, until suddenly, I just reached over and pulled the door handle - very calmly - and - like someone escaping a kidnapping - ninja-rolled my way out of the car. I landed on my feet and just walked away.

It wasn't until I felt the gigantic surge of relief in the dream that I realized just how hard this whole situation has been. How out of my own control I feel my life has gotten - not just right this minute, but in the grand scheme of things.

And there are, obviously, things in my life that I can do nothing about - my grandmother's stroke, my own illnesses, having to move, losing people I love - Those things are going to be there, are going to happen, no matter how hard I try to will them away, no matter how much I don't want them to be. I can't control those things. But I kind of just realized that I'm still trying to control them anyways... and that I'm fighting a losing battle.

Which doesn't mean I'm giving up - far from it. In fact, it just means that I have to do a better job of figuring out what I am in control of, and what I do have power over, so I can do a better job of focusing on those things.

I know: this seems like the simplest thing ever, and it also seems like something I should have gotten into my thick skull long before now, but it really is an ongoing thing - it isn't as if I haven't been working on this for the past fifteen years, it's more like I am re-realizing that I am focusing my energies in the wrong direction, and that I need to pay more attention to fixing that.

The more I worry about how nobody else is coming to visit Grandmother - I am one of seventeen grandchildren, who came from 9 children originally - the more upset I get. (Yes, the 17 and 9 are spread out across the country, but there are at least eight of us within easily driven distance, and at least three more of her kids. Total who've shown up? Three - each visiting once, for a relatively short period of time.) But getting mad about it, or feeling resentful that they're not going out of their way to get here does me no good. It does her no good. All I have to do is show up, get the word out, keep doing what I can do, and let the rest go. If other people make (what I see as) poor choices, then it's their loss. It's their decision, and there's nothing I can do to make them realize that they are missing out. I don't understand it, but I don't have to, either. I just have to be there for her, and hope that it is enough.

The more I fret and churn over a vicious fight between my two sisters, the less helpful I am to anybody - On a recent day, I managed to "ruin" both of their days by bringing up the other one, and ended every conversation in tears. It's not helping them, and it certainly isn't helping me. I won't stop trying to help them figure out how to move on (I don't think I can: it would hurt too much), but I have to realize that it isn't in my control. I can only do what I think needs to be done, say what I think needs to be said, and then leave the rest up to them. If they're not ready to hear it - as is obvious by the fact that I always wind up hurting them and myself when I try to get my point across - then I can't do anything more but be here when they're ready for me.

I can chatter till the cows come home, because empty space in a conversation makes me a tad bit uncomfortable, but I'm never going to make my uncle say a single word he doesn't want to say. So I better learn to appreciate that there is such a thing as companionable silence, and figure out how to enjoy it.

Now doesn't all that sound so lovely and mature and easy?

Yeah: the writing of it always makes me sound like I've figured it all out, but in reality? I'm going bit by bit, trial by trial, day by day.

(Although I have really figured out how to like silence. Sometimes I write the best blog posts in my head when he and I are just sitting in the same space, being together, but not having to say anything - how'd you like this one?)

*Douglas Adams

"If I had my way I'd make health catching instead of disease."*

First off, I want to thank all of you for your very kind thoughts about my grandmother. She is much improved, and has moved from the hospital to a local (ish) rehab, where she's getting some much needed help with her leg strength and balance. Aside from being a bit more wobbly (which was an issue prior to her fall), there seem to be very few ill lasting effects. Knock wood, throw salt, praise the god/goddess/ancient deity/flying spaghetti monster of your choice. I do really appreciate the support I've received here, and can't tell you how much. We're working through it. Slow and steady.

One of the things I've been spending a good amount of time pondering during the endless hours of "hurry up and wait" or "the doctor/therapist/food will be here any time now" that have accompanied this experience is the shocking clarity of learning just how closely my grandmother's condition and my condition resemble each other. A few of the correlations I've seen just today -

• Because she has an atrial fibrillation, her heart rate and pulse can drop dramatically, and she's been on multiple blood pressure meds to help control this. For me, that's the POTS, and the drugs she's been on? I've been on the majority of them too.
• She has weakness and swelling in her legs, and they're not really sure why. Ditto here.
• She has freezing cold feet - sometimes requiring three or four pairs of socks. I also have this problem (although it's not as constant as hers, and is complicated by the burning on the bottom of my feet sensation I get too), and most days, if you put your hand on my upper thigh and slowly move it down, you can feel about a 10 degree temperature drop by the time you get to my icy cold toes.
• She has an unexplained (but attributed to her heart condition) dizziness and vertigo; I have an unexplained (but attributed to my POTS) dizziness and vertigo.
  
• Neither one of us can stand, unaided, and straight. We invariably begin to tip after just a few seconds.
• She's passed out more than once - her history of fainting spells stretches back to when she was a teenager. Want to take a guess when mine started?
• She's weak and she's tired a lot, and they like to say things like "Well, you're ninety three, what do you expect?" when she complains about it. I'm tired a lot, and unreasonably weak, and they like to say things like "Well, you've got chronic health conditions, what do you expect?"
• We've both learned to sit at the edge of the bed, feet dangling for a minute, before we dare to get up. (And by 'learned', I mean to say we both remember it when we feel like it, and sometimes screw the consequences when we don't.)
• We both have extremely sensitive skin - her back has been as hot as coals ever since she was admitted to the ER, due to some combination of hospital/rehab soap and laundry detergent. They gave her some medicine to put on it, which I've been helping her with, but the rash I got on my hands spread like fire all the way up one of my arms, so I had to start using gloves to put it on.
  
• Neither one of us likes to be in the position of asking for help, and get frustrated by people telling us what/how we should be doing things. (Oh wait: this is unrelated to our medical conditions unless "stubborn as a jack ass" is now listed as a medical condition.)
  
• Same goes for physical therapy and occupational therapy. (See above point, re: jackassery.)
  
  

Our medical conditions are in some ways eerily similar, even though I know they are not the same: I have had about a million heart tests, and by now, for sure, they would have found the murmur or the blockage or the tiny little atrial valve that plague my grandmother. It's not what's wrong with me - I've got a million things that she never had: extra sensitive sense of smell and hearing, allergies to every natural and man made substance ever, hyper reflexes, muscle wasting/weakness, chronic infections and low immune system support; Most importantly? Pain, pain, pain, pain, pain. I'm so glad that she doesn't suffer from pain that I could cry, but, since it's my most debilitating symptom, I can't pretend that it's not the biggest difference in our situations.

So I can see the differences, and the parallels, and I have to wonder: how much of this is in my genes? How much of this - whatever this turns out to be - is in everybody's genes, just sitting there, only coming out when something goes wrong? Because I can also see the similarities between me and my mum (who's got ulcerative colitis), or my sister with depression, or my other sister who developed random allergic hives for 8 months that disappeared as suddenly as they came. So how much of what's wrong with me is laying dormant (or not-dormant, as the case may be) in the people I love? And how much of it is floating around in everybody's genetic code?

It's a scary thought: Both the "why did I wind up being the lucky one" part, and the "Holy shit, what is wrong with us???" part.

The main difference between us is that my grandmother's condition - aside from her extremely sensitive skin & occasional fainting spells - waited till she was in her eighties to attack. She had a full 'before' life - with 9 kids and a husband, and the mother in law from hell, and being a nurse during WWII, and helping to raise her granddaughter when her son died, and a million other things that happened before she started to become unwell. For me, my life before - the lesser (percentage wise) portion of my life, at this point - ended at 15. Before I had the chance to do so many of the things I wanted to do, and consisted mostly of being a child, a dancer, a reader, a babysitter/big sister.

But here's where I go back to our similarities, because my grandmother - then in her eighties and now in her nineties - dealt with it. All of the inconveniences and indignities of being ill and having to figure out how to live your life the best way you know how. And - while I may not always succeed as well as she does - I'm certainly going to do my best to make that our most striking similarity: the fact that giving up ain't really an option. That we are not the illnesses we've been battling, or whatever disabilities we may have, but only ourselves.

And that the weaknesses we've got in common don't matter near as much as the strengths we share.

*Robert Ingersoll

Let me tell you something...

(said in my very best Fire Marshall Bill voice): I just don't know what to tell you.

My head is full of so many things it is like a buzzing, humming swirling hive of activity. There isn't any space unoccupied by some new terror or old enemy or flashing through like lightening bolts or scrolling through like a news crawl - "This just in: You are Still Hurting! And reports are coming in of even more affected areas - Devastation spreads! Stay tuned to this channel for further developments."
Basically, the inside of my head is on overload, and that makes it kind of difficult to weed out enough (logical, legible & un-loopy enough ) bits and pieces to write something. Anything. Anything at all that doesn't wind up reading like the inside of my head - a lot of words and letters that are seemingly unconnected and yet make entirely too much sense.

So that's where my head is at. My body, at present, is camping on the Pull Out Couch of Death (tm) at my grandmother's house. Again. As I was laying on it in the dark last night, I was thinking back: I didn't have a lot of sleepovers here as a child (probably because our houses were about 3 minutes apart from each other), but occasionally, when my dad was on leave from the Navy, my brother and I would stay for a night or a weekend. We must have slept on this very same pull out couch, because there's no way this thing is less than 30 years old, although the one we slept in seemed huge to me then, and this thing feels like a postage stamp now, compared to my queen sized cloud of awesome at home.

I can remember laying on this very same bed, in the almost total dark - my brother beside me, his foot twitching back and forth as it does every time he goes to sleep; the street light shining in through the cracks in the shades, just enough light to keep it from being pitch dark; an intense and eerie quiet all around that never seemed to happen at my house no matter what time it was - and being petrified of the odd shadows, the different creaks and groans of the house, the ticking of the clock.

I must have been under ten (maybe even more like 5 or 6), but the memory came back to me so clearly last night - just the feeling of absolute, frozen, "I can't go to sleep because I might never wake up" terror. I was sometimes (ok, maybe most of the time) anxious as a child, and once my brain latched on to something - even if I knew it was ridiculous, outlandish, and totally improbable - I just couldn't let it go. It would swirl around in there like a tornado, picking up bits and pieces of other worries and wishes and whatevers as it spun ever faster and grew bigger until I thought I would explode from it. (This is not that different from how I am now, come to think of it: I guess we don't grow out of as many things as we would like to believe we do.)

The fears of my ten year old self seemed laughable last night - the creaks of an old house are nothing compared to the strains of an older life.

I have been staying here for four days, as the sibling switching that occurs at my house has required a new paint job in one particular room, and I don't know how much longer I'll stay. My grandmother has been in the hospital for all of those four days, and we don't know how much longer she'll stay there, either.

On Friday night, my uncle heard a thump upstairs in her room, and he went up to check on her, and found her on the floor, tangled in her blankets. When he got to her, he realized he couldn't understand what she was saying, so he got down on the floor and took a good look at her face, and saw that the left side was drooping. I think everybody recognizes that symptom as what it turned out to be - my Grandmother had had a stroke.

As it turns out, she had what is (apparently) the best kind of stroke - a mini-stroke, a temporary stroke, a Transient Ischemic Attack. At the hospital, they were able to treat her quickly, and she has since recovered to about 85% of her normal self - her speech returned quickly, the drooping went away, she is able to breathe and swallow and sit up and stand all on her own. The only physical signs of her stroke are a large bruise - which takes up a quarter of her face - she got when she fell out of bed, and some lingering weakness and swelling in her left leg, that the doctors are pretty sure will go down on its own.

She is bored and frustrated by her lack of control at the hospital (I come by it naturally, see?), and she's tired because "the people who work here have no respect for night time hours," and she's a little bit embarrassed and scared, I think, too, which she has shown by being pissed at my uncle for making the call to the ambulance in the first place. But she's herself, and she's ready to come home, and she doesn't understand what's taking them so long to let her go.

She's alright, is what I'm saying: She's doing a lot better than the doctors said she would be doing, and excellent as far as I'm concerned. But here's the thing - my brain just can't shut it off. It's got this worry wrapped up in the tornado now, this huge "She's 93 years old" funnel cloud full of "But what if"s and "I'll stay here forever if you need me to" and "I can't handle this" and "God I hate hospitals, even if her room is better than most hotel rooms I've stayed in, why the hell does it have a fake fireplace" and "Holy shit, I really can't do this again" and a million more swirling swishing sounds and sights and memories and realities and fears.

It makes me long for the worries of ten year old me, that's for sure.

In the meantime I try to be helpful: try to answer the phone and pass out the updates to the family scattered around the country; try to convince UJ that I can make dinner for myself - and for him - and that if he needs to stay at the hospital all day, I'll be fine; try to make the doctors who come into her room speak louder because she doesn't have her hearing aids in and she needs them for a reason; try to ask questions and think of solutions (the rugs at home can all come up, if that's what we need to do/the pull out couch needs a much better mattress if she's thinking of sleeping on it long term) to all the little issues that are popping up; try to rub lotion on her back because I also come by my sensitive skin naturally, and whatever they wash the sheets in has given her a rash (even though the lotion she uses to soothe her sensitive skin leaves my sensitive skin raw, red and burning); try to do something - ANYTHING - to make myself of use, and to give me something else to focus on, a stopper to keep that tornado from spinning so fast that it carries me away with it.

Disability related linkage

Here are some disability related posts/pictures I've seen in my recent travels through the series of tubes that comprises the internets:

• Here's an exceptional post by Miss Britt aboutAccepting her new "normal" as she discusses her depression. It is just... amazing.
• Also of note is this post, and the (as always) fantastic comment section, about disability and body image over at FWD.
  
• I'm not entirely sure how I feel about this news: A German toy company is making stuffed animals with ascribed mental illnesses - A turtle with depression, a snake with hallucinations, a sheep with a personality disorder. I've been thinking about it since I saw the initial report, and I still can't decide if I like the idea or not. On the one hand, why not? Why shouldn't there be a percentage of dolls and toys who have illnesses, just like there's a percentage of the population that have illnesses? On the other hand, how are they going to handle it? Is it going to be just one big stereotype on top of another: How do you play a personality disorder? The website, which is called the Asylum :sigh:, is not in English, so I can't exactly tell what the poster is saying about the toys, besides it's about "psychoanalysis" and "treatment" (which seems to be hugs). I just don't know. What are your thoughts?
• Here's a picture of wheelchair fail, via Friends of Irony.
• And here's some wheelchair win, via Tots and Giggles. It's a Wii Balance board based mobility aid that moves using weight sensors, so as the baby moves, or leans, so goes the board. It's pretty amazing work, and I can think of an astronomical number of implications for other types of mobility aids and improvements. From their literature

  We hope to use what we learn from this work to develop systems to allow safe, purposeful powered movement for infants with physical disabilities. The next phase of the research will be to study the same research questions using different control systems, and working with children with disabilities.

  
  
  

I always have 23000 links that I mean to post here, and then I get overwhelmed and wind up forgetting. So here's to remembering for once!

Happy Holiday I Never Heard of Before

True Story: Sometime in the early nineties, when 90210 was in its heyday, and I was in the 7th grade, my best friend and I convinced my mom to take us to a local mall where Ian Zearing and Luke Perry were going to be appearing.

To this day, I have no idea why we did this: Because it was on the radio? Because some of our friends were totally rabid Luke Perry fans? Because it seemed like this huge deal at the time? I am honestly not sure - neither she nor I were huge fans of those particular actors, (although I did have a crush on Jason Priestly in his pre-90210, Teen Angel and later Sister Kate days) even though we liked them well enough, and neither one of us remembers being particularly enthusiastic about the show as a whole. We weren't super fans or mega fans, or anything more than "I know all about Brendan and Kelly, think Brenda should get back with Dylan, and don't care about Donna and David" followers. We watched the show, but in the pre-everybody has their own TV in their room days, weren't guaranteed to even catch it every week, and it wasn't that big of a deal because everybody in school would be talking about it the next day anyways. All I can come up with was that some of our friends were going, so we wanted to go too.

So we talked my mom into getting up at 7:30 on a Saturday morning (no easy feat) to drive us the 6 minutes to get to the mall. (I was not allowed to take the bus back then. You too can roll your eyes over the injustice of it all with my 12 year old self if you'd like.) When we got there, it was packed. Shockingly, worse than any Christmas shopping day ever, overly packed. There must have been hundreds teenage/tween girls there, and they didn't even let us inside the mall.

Instead they rounded us all up on the outside concourse, behind the mall, around a little lake - which up till then I hadn't even known existed - with a path that was cut directly from the Charles River. I remember standing there shivering, although I can't recall exactly what season we were in - Cold. That's about it. Covers everything from November to April in Cambridge, so I can't narrow it down. Just that it was cold and brittle, and that teenage girls who had taken all morning to get their hair just. right. in anticipation of meeting the dreamy Luke Perry had their hopes crumpled when the wind whipped around and gave everybody the same "I've just lived through a cyclone" hairdo.

My mom had her coffee, smoked her cigarettes and muttered under her breath about how she let herself get talked into these things. My friend and I, unable to find any of the other girls who'd sworn they would be there in the midst of the huge crowd, mostly shifted from one foot to the other trying to keep warm, talking about nothing in particular and dreaming of hot chocolate and donuts when this was all through. I don't even remember being excited. Just cold. And bored. And not particularly happy about this waiting outside nonsense.

And then there was an announcement, and the lady from the mall must have said something about them coming, because there was a huge cheer. We didn't hear what she said, but the excitement in the crowd amped up a lot, and I know my friend was starting to feel it, because she started to do this tense little hop. Other girls started to pop up a little bit too, trying to see over the crowd, and for some reason, this made me feel anxious as well. Something was coming. Somebody was coming, and it was somebody famous. And that started to get a little bit exciting.

We waited like that for a few minutes, things getting louder and more intense, until finally we heard a boat's engine coming in from the river. From where we were standing, I could see the water pretty clearly - everyone had assumed they'd be in the mall, so those of us in the back actually wound up having the best few when we all had to turn around.

And now girls were screaming, and there was a lot of noise, and the boat was zooming around the little waterway (pond? maybe.) and the two actors were on the boat waving grandly. Smiling, waving, on their parts; cheering, screaming and clapping from the crowd. I have to admit, the noise was slightly overwhelming. I do not remember contributing to the noise really, but I must have: I was big on fitting in, so I can't imagine I just stood there and made a "Why the hell are we all making so much noise?" face, even if that's what I was feeling. I probably cheered and clapped, and I do remember hugging my best friend back when she was so excited that she hugged me.

And then Luke Perry took a megaphone, thanked everyone for coming and said what great fans we were. And Ian Zearing had his turn and said something very similar. And then the boat went around the little waterway again, and it zipped back out on to the river, two actors waving as they left, hundreds of girls standing there cheering.

The entire experience had lasted ten minutes, tops.

Now, I had not really even been all that excited. I had not even particularly wanted to meet the actors. But I can remember being more than a little bit pissed that all they did was zoom around the water twice, say "Thanks for coming" and then zoom off again. I know I wondered what the hell I had gotten out of bed early for. And I definitely remember being more than a little upset that they never even let us in the mall (I wanted hot chocolate!) Other girls, girls who'd brought posters or hats or t-shirts for them to sign were probably more than a little upset, and I don't really blame them: I'm pretty sure we had all been told that there would be a signing, so I can imagine more than one tweenage girl left with a broken heart. (Probably through no fault of the actors themselves, but rather some bad public relations, but still.)

So that is my one and only "I've met a celebrity" story, and it contains no actual meeting, and makes me sound like one of the Twihards who pass out at the mall when a certain sparkly vampire (or rather, the actor playing him) shows up. In reality, my brush with celebrity was cold, disappointing (no hot chocolate!), short and rather unimpressive.

But still: It did give me a story to tell on 9-02-10 Day. :)