3 months later.

I miss you guys.

That seems like the place to start.

This is definitely the longest hiatus I have taken from writing here at my blog since I started it (coming up on 10 years ago), and it was unplanned, but pretty unavoidable.

Since my sister-in-law passed 3 months ago, I've been completely absorbed in trying to make things bearable for my brother and his kids, which basically consists of me living on their couch, making sure they don't starve (or, more likely, perish from scurvy, as their interpretation of fruits and vegetables runs more to the 'by the foot' and/or  'fry/chip' variety), pretending my 2nd major in social work 10+ years ago is an acceptable form of grief counseling, and making sure they don't live in filth. (My brother was ever the slob, and devastating grief did not make him MORE likely to pick up after himself.)

I'm not doing it on my own (there are a lot of us on the support staff) but a lot of times - when my niece is shivering her way through an anxiety attack at midnight, or my nephew is having a mini-breakdown that we're both pretending is all about school, or my brother is upstairs wailing his grief away and I can't go up and comfort him or even leave and give him privacy - it can feel like I am.

Normally, periods of emotional upheaval leave me itching to write, and this last little while was both no exception, and so much of an exception you wouldn't believe. There were times I felt as if if I didn't write, I might explode, and there were times were I felt like any words I could possibly write were too small, too insignificant, too useless. Mostly, though, I've just been too exhausted to parse any words at all.

The amount of spoons that this all takes - physically and mentally - is overwhelming. It's a 24-hours a day position, with no breaks or breathers, most times. My niece needs constant reassurance that everyone she loves is not going to just disappear, sometimes to the point of needing to be near me for hours at a stretch, constantly touching and talking and... that is not a thing I am physically capable of doing, most days, but I do it anyways.  My brother needs someone to run herd on his kids during the days he can't get out of bed, even if they're huge balls of tantruming energy, which is not in my wheelhouse, but I do it anyways. My nephew wants me to help him figure out calculus I forgot three seconds after I learned it 20 years ago, through brain fog so thick I put the controller in the refrigerator the other day. Not a great plan, but I do it anyways.

"I do it anyways" seems to be the motto right now, because shit needs doing and I'm the only one around to do it.

But this mentality (and let's face it, that's always my mentality, no matter how many times I try to change it), as you might guess, does not play well with chronic illness. I've been running on the fumes of fumes for at least two of the four months I've been here, and I keep crashing, but still have to push during the crash, because otherwise - as I previously mentioned - shit doesn't get done. And none of that stuff is optional: it's homework and 'my head hurts' and 'why isn't there any food in the house?' and three solid weeks of blizzard conditions and snow days galore. Decisions, big and small; appointments to make and cancel and try to show up at; rules to reinforce and reinforce and reinforce  - because bickering doesn't stop for migraines, and neither do dishes or meals or any of the other things that normally I would stop because it's just me and who cares, but right now it's not just me, and it doesn't stop, and that's hard.

It's all very hard, is mostly what I'm saying, and for every day I can crawl my way through without winding up in the hospital, I am super grateful.

And everybody else is on me to take care of myself better: which is a thing I want to do, a thing I know I need to do, but a thing I can't quite figure out how to do. Because asking for help is only OK if other people can provide it, and somehow everybody else is already doing the best they can here too. And I've definitely used up as much of my own reserves (ha! as if I had reserves. I had... like.... I don't know: gall? Is that a thing? I think that's the thing I mean.) as I could. I've been sicker here than I have been in years - part of it is exactly as I remember from watching these same kids as infants and toddlers, that every germ in creation is somehow called to them and then transferred to me, but another part of it is just being freaking exhausted in a way I've somehow managed to forget during (relatively) good cycles of illness.

I mean, I'm never NOT tired or sore - 20 years this past fall since that was even an option! - but I HAVE been taking care of myself and managing my illnesses for quite a while, and I've worked out all sorts of cheats to make things easier on myself, and so, I haven't had to be CONSTANTLY DOING anything for years (because I know how it wears me out, and is bad for me, and I don't do that anymore), so now, I guess I'm just remembering why. Oh yes: THIS IS THE REASON FOR ALL YOUR ADAPTATIONS, YOU FOOL. This constant exhausted feeling right here, where your brain is Swiss cheese and your white blood cells have declared themselves pacifists and your red blood cells have noped the fuck out of here, and you basically have all the energy of the lump of pillows you're trying to nest in, but you still need to get up and feed the faces of people who are still too young to manage it on their own. (Not that I don't make them do some of their own meals, but an 8-yr-old should not be in charge of feeding herself 3 meals a day, just take my word for it.)

If I've ever doubted that being a spoonie means being a warrior (and I only ever have in my own case, when it seems like the things I do are so little/adaptable in comparison to others), then those doubts are gone now. I could not be fighting any harder just to survive, and to pull these children and my brother along with me, than I am right now.

And, so, the lack of writing.

But I do feel like I'm going to explode without it, so I'm back. Even if I can't promise regularity. Even if the only thing I can promise is that when I show up, I'll have things to say.

I appreciate any of you still out there listening.

2:41 AM, 10th November, 2014

If you follow me on Twitter, you know that my sister-in-law passed away on November 10th.  She died peacefully - I saw her breathe her last breath, open her eyes, and then, just... never take another one, from the same exact chair I am sitting in to write this post, 12 days later.

She fought so diligently and so hard, for so long, even though she really only had a short time. Her cancer proved to be super-aggressive, and ... towards the end, there wasn't much we could do for her but keep her comfortable, and wait.

That last Sunday was horrible, with last rites, and a house full of family - hers and ours, and theirs - and her being unresponsive by dinnertime. 

That morning, early - like 4:30 in the morning, early - I smelled the sharp scent of urine, and had to feel to see if she'd wet the bed (mostly because, at this point, she was sweating through her clothes so much that she was almost always damp). It was her first bout of incontinence, and - although I knew it boded ill, I did not realize how quickly things would go downhill from there.  I had to wake my brother up to help me change the sheets, and then she took her pain meds and went back to sleep.

A few hours later, she'd woken up in extreme pain, couldn't seem to settle at all. Just kept shifting from one end of the bed to the next, every 5 minutes or so.  She took more pain meds, but was just super uncomfortable and couldn't find a spot that worked for her. She told me her pain was 10/10 and she was crying, almost incoherent.

I woke my brother up again - from the couch this time - and he called the hospice nurse. Who came and different meds were administered, and we - the nurse and I resettled her on the couch, to try to help her find a way to sit with less pain while she waited for the meds to kick in.

It was during this transition that she was last semi-lucid, at least in my presence, and as I sat her down on the couch after yet another 'I'm so uncomfortable, I just need to move' attempt on her part (wordless, though - that's just the impression I got), she leaned over and gave me a kiss on the forehead.

I don't know if she knew who I was then. I don't know if she meant that for me, and I feel guilty that I was the person who got her last kiss. I haven't told anyone in our family that she did it, I don't think (although ... things were pretty intense there for a while last week, so I may have told one of my sisters without thinking about it), but it felt like a "Thank you" and a blessing and - now, knowing it was her last, and she didn't get to give it to my brother or their kids, or even her sister who showed up moments later? Almost a torment.  I still feel gifted by it, always will, but it hurts my heart so much that she's not here to give out anymore.

Shortly after that, her sister came, a family friend who is an actual nurse and knows what the hell she is doing (as opposed to me, who just spent weeks caring for someone I loved and watching them slip away, AGAIN, but was just doing my best and making it up as I went along, and following directions) also arrived, and I moved into a much more peripheral role.

She continued to get worse and worse, becoming unresponsive to everything besides pain, relatively quickly (within a few hours). I let my brother and her sister, and the nurses, be in charge of what they could be in charge of, and I made sure the kids got fed and my parents & sisters got called, and that her sister knew she needed to call her parents and brothers as well. I learned all about the new, liquid meds from the hospice nurse, and gave doses of morphine and ativan and hyamax as the day wore on.

I called the priest, and the funeral home, and the priest again. (And we all know how much I hate making phone calls). We cried, and waited, and held hands, and helped the kids. Gave them a chance to say goodbye, then let the little one curl up into my lap and sob when she walked away. Watched her big brother comfort my big brother as they both sat in tears by my sister-in-law, SisterNc's side.

Watched as her nieces and nephews filtered in and out. Approved as my sister and her husband ordered a regiment's worth of pizzas and made sure everybody got fed. Comforted and cried, and just sat around rubbing smooth patterns into backs, and backs of hands, and anywhere I could reach, really.

Later, her parents and brothers, and my dad and sisters, all cleared out.  We were down to my mom, her sister, the family friend who is a nurse, my brother and I, and a friend who had known them both since the moment they met, some 16 years ago.  Around midnight, it seemed to get dramatically worse, and the med levels increased and the hospice nurse came out again and told us "a matter of hours."

About 2:30, my brother and her sister both decide to go upstairs to get some rest. The nurse-friend, the work-friend and I are sitting in the living room, my mom has snuck outside to get a cigarette.

A quick text from my brother asking me to bump the heat up because it's freezing upstairs, @ 2:37. As I settle back into my chair, I glance over at Nancy, see her breathing is very strange, but I check the book and it is nowhere near time for more meds. So I sit down, and the work friend says to me that she gets an inspirational text every day on her cell phone and starts to read it to me. It says something about "new pathways and being open to new challenges," And that's when I see SisterNc's eyes open, and I notice that she hasn't taken her next breath.

The nurse-friend has noticed too, and is getting up, checking on her, fussing with her. We both know - I can see she knows - that there is no reason to fuss.

It is 2:41 am, on Monday, November the 10th, 2014, and my only sister-in-law, the beloved wife of my brother and mother to two of my favorite people in the entire world, the only sister I ever made instead of came with, has died.

I send my brother a text that reads "you need to come back down, honey", and he must know. He wakes her sister up and doesn't bomb down the stairs. Takes each step, heavily, I can hear it even now. They are both crying as soon as they see us. As soon as they see her.

My mother comes in from the kitchen, seeing us, and begins crying too.

And that was her last day, her last actions, her last minutes, to the best of my recollection. I do not want that kind of thing to be forgotten, even if I am the only one who remembers it.

The past twelve days have been torturous for my brother, and difficult for his children, and so heartbreaking for all of us. I don't know how to help any more than I am, but I fear that it will not be enough.

I am - we all are - doing the best we can.

But it's hard to keep swimming with a broken heart, and hard to hold the pieces together while you wait for even the tiniest bit of it to heal.

Here's how it happens

I go to visit my grandmother after she gets out of rehab, following a nasty tumble down the stairs. I've talked to her, as usual, on our Friday night phone calls, but ... something seems off. She drifts, seems to forget she's talking to me, seems ready to hang up as soon as she answers the phone. I'm worried, but my uncle has assured me that it's just a medicine mix-up, and that it's all under control.

Shortly into our visit, I realize that nothing is under control. My uncle is somehow missing the fact that my grandmother is not acting lucidly, that she's easily confused, that her pain is not being managed well. As we talk, he seems to realize that things are worse than he recognized, and I can see that neither of them are sure what the hell comes next.

I have no idea what comes next, except now I am volunteering to stay on the couch, and help with meds and her PT almost before I knew I was thinking it. I was meant to stay for a few days, but - on the first free day that I went home, to shower and refill my pills and gather some supplies and whatnot - I don't make it as far as my house before I am filled with an overwhelming fear, only manage to make it to my room and close the door behind me before I am sobbing uncontrollably.  The only thing I am sure of is that I need to be there, because they need me, even though I will be able to solve nothing, even though there is no possibility of fixing this.

And that was the last night I spent anywhere but my Grandmother's couch until three weeks after she passed away.

----

This time, my mother and I have planned to come down to my brother and sister-in-law's house every Thursday, and at least one other day during the week, to clean the house and distract & feed the children, and just... be supportive. The cancer is stage 4: we are hoping for miracles, but know how unlikely they are. We do not care. She does not care, and so treatment continues.

We are there two consecutive Thursdays, straightening things up and moving all their shit into neater piles, and helping the (not so) littles with their homework - basically doing the busywork of life that falls to the side when you're too sick to do anything but sleep and take your meds.

 My brother slowly seems to understand that we are here to help and not to just mess with his shit, and starts confiding how scared he is, how desperately hard this is becoming, how he doesn't know if he's going to be able to do it. On Facebook, he cracks a 'joke' about Stage 4 Cancer and spousal weight loss, and I can see how tightly he is holding on to his edges, how close he is to his private apocalypse, and I ask how I can help.

He tells me he trusts me more than anyone else, and he needs someone he can trust. He needs someone. I know how to be someone, and I push aside the thoughts of how often I need a someone and can find no one, push aside all of the non-essential elements of my own brand of being sick, and transition into helper-mode. I make schedules and organize paperwork and calendars. I make sure someone else will always be here, even if that someone else usually winds up being me.

Not being able to drive, and Mom having a job now, and scarce/uneven coverage during the day, mean that it's much easier to just camp out in their comfy chair, to claim a corner of the living room as my own. Sleepover almost never-ending, for now. For today.

And here there is hope, and here there are treatments, and here there is still that irreversible diagnosis waiting for us at some end, but it isn't now.

 For now, I try to coax my sister-in-law to eat more than three bites of noodles, of pizza, of absolutely anything, and lament that radiation makes everything taste like chalk. For now I keep med schedules and daily logs and ask otherwise inappropriate questions about bathroom habits, and hope that, somehow, she will forgive me. For doing her kids' homework with them and making decisions about whether they can go over their friend's houses; for camping out on her couch when she probably just wants to be alone; for following her into another room when she can't really tell that her feet are tangled in the oxygen cord.

For all the little things that piss me off the most when I'm sick, and I try so hard to avoid, but somehow, occasionally, still slip out. For poaching and nagging and making a sad face when I think she's not looking.

That's how it happens - how, piece by piece, I become a fixture in someone else's story, someone else's home, someone else's days. How I turn off my own life - just for this little while - in the hopes of helping. Just Helping. Sweet jesus, just Let Me Help. 

In case you were wondering. -

And a lot of people seem to be, and aren't exactly nice when they inquire - "How can you take care of someone else, when you can barely take care of yourself?" they ask. You're right - taking care of me is a struggle. Every. Single. Day. But a lot of that struggle is sitting around, laying around, distracting myself from the pain. Turns out; it's not that much harder to do in somebody else's living room, watching over them while they rest. Waking them up every few hours to try and get them to eat. Reminding them to take their pills when your alarm goes off for you to take your own.

Not saying it isn't hard. Because it's draining as hell and I couldn't be sorer outside of a 5-alarm-flare, but ... it's worth it. To be able to make her smile when I poke fun at my brother. To make my brother be able to go to work without having a panic attack. To hug some kiddos and let them pretend during a game of War. To talk to her sister and let her know that she matters to us too, that Sister-in-law is a part of our family, and that means that her sister can cry on my shoulder any day. To learn more about her, filing away bits and pieces for tomorrows.

If it's something that winds up being too physically taxing - and it already is, it always is - then that's a thing I'll deal with. Because there are a lot of parts of my life I have had to shut down, turn away from, pretend don't matter, and this is one area I'm just not willing to do that with. 

But in case you were wondering, that's how it happens.
 

so here i am

how I've been feeling lately: like pond scum.  like a junkie, only I don't know what I need a fix of.  like a crumpled up wrapper that someone tossed at the barrel, missed and now just keeps getting trod on underfoot, because everybody is too lazy to bend over and pick it up.

so, in general: just awesome.

according to my med tracker -into which I input my symptoms, vital signs, pain map, mood, meds, etc, daily - I'm doing just fine.  I guess that goes to show you that there are limits to what computers can do.

It can't, for example, extrapolate from the fact that my pain levels have been at a consistent 8-10 level for the past....year, that my pain is, in fact, out of freaking control.  (In fact it reports I have been "stable," which makes me want to strangle it, but it is but a website and has no neck to strangle.)


It can't use the data from my latest migraine - pain level: 9, days lasting (so far): three, meds taken to control it: at least 4, ability to move or live a life that requires doing more than rolling over in bed or taking the hottest shower possible; nil - to confirm that I have become some sort of cave troll, who lives in a twilight world where lights can't be brighter than twinkle lights, movements must all be made in slow motion, and noises can't be above a whisper.

It can take my three month mood average of 'okay' and filter it down into 36 days with at least one episode of tears; 5 days of actual, recorded laughter; at least two days when I felt like talking to people was as painful as pouring acid on myself; but it doesn't seem to register that my definition of an 'okay' mood is seriously lax, because I would've included most of those days in the roster. Or that my much lauded patience is at an all time premium - I have no time for nonsense (or only time for nonsense, I guess) - it depends on who you are and what you want, but if it's stupid, I'm outta there, because ain't nobody got time for that. 

It can tell you that my blood sugar's been bloody high - a fact probably influenced by my inability to eat anything that doesn't come in the form of a cookie, potato or cupcake without wanting to throw it back up again. (Don't ask me: carbs are comfort food.) And even then, it's dicey.

It can tell you that my blood pressure's been kooky - per usual, of course - but my pulse has started to join in and beat a crazy rhythm whenever it feels like it. and sometimes I feel like it might just beat right out of my chest, as if it were a separate thing, growing inside of me, its own necessary beat that I cannot control.

Today's a tough day: I know it, as much as I know that these past six months have been hard months, and that - eventually - days won't be so hard, and months will pass without me taking such extreme note of them.

But right now, fighting this maximum migraine and the melancholy mood it has brought with it, everything seems like forever.

As if I am always just those numbers on the stupid chart, and nobody can see past them.

As if I don't remember that there's more to me than those stupid numbers, most of the time.  As if that's what I boil down to, in the end. And what a sad end that would be - abnormal numbers and not a lot else.

All I want is to feel better, and I know that part of that is in my power, that there are things I need to do to make myself feel better, (less carbs, for example) but, when you keep trying and you wind up in the same position over and over and over again - and that position is basically curled in a ball on your bed, wishing there was something you could take that would MAKE IT STOP, just for a little while - it's fucking frustrating, is what it is.

I'm working toward my 19th year of chronic illness, and sometimes I feel like I have Got This Shit Down.  I know it backwards and forwards and inside out.  I can talk to anybody about conserving spoons and living with the ifs/whens and how to fire the doctors that make you feel like garbage and why you should put your pills in those little day packets and why abelism is a bunch of bullshit & you don't have to put up with it, and so, so many other, important, wonderful things.  And I'm proud of all of that. 

But there are days like today, when it feels as if I have learned nothing, where if feels like I've spent 19 years banging my head against the same fucking wall, and only wound up with a cracked skull for my troubles. 

And I just want a break, just want a few days where I can breathe easily, and not worry about what I'll smell and how sick it'll make me.  Where I can move without immediately regretting it or hiding how much it hurts.  Where I can sleep and wake up rested; feel hunger, eat and then feel full; sit around for hours with people I love and not have to worry about where to plug in the heating pad, or whether or not I should take the next pill if I want to stay put.

It's little things and big things, and today they all feel like big things. 

Most of that stuff doesn't matter to me, on an ordinary day, but I guess that's the patience thing again - the person I have the least amount of patience for is myself.

But I know this will pass, so I'm going back to my dark-ish room (even on it's dimmest setting, the laptop is too bright at night), and the soothing voice of Jim Dale as he & I re-traipse the grounds of Hogwarts with our favorite magical trio.

Here's hoping for better days ahead.

Hi Again

I know it's been a couple of weeks ~ I'll claim the first two do to just complete exhaustion, and the last two because things are pretty fucked up here, and I'd hoped to come back and be able to say "Thank you so much for your kind thoughts" and then move on to happier things.  But I don't seem to have any happier things, right now.  Which is not just to say that I'm f'ed up (although I am): there's a whole bunch of family shit that's gone down that's beyond messed up, and somewhere between my grief and the situation and everybody else's grief and confusion and all of our individual issues, it feels like my family is basically coming apart at the seams.  Not that those stitches were all that tight two months ago, but they just sort of burst the week of my grandmother's funeral, and I'm at a complete loss as to how to pull them back together again. 

I don't even know where I am or what I'm doing,  at this point, besides making it through the next fucking minute without falling apart.  And I'm not always doing a bang up job on that, to be honest.  I'm back at our house, but it's not home - it really never was, only maybe I was better at pretending before I watched my grandmother die and realized that I need to do more than mark my time here.  I can't seem to talk to anybody without causing a secondhand fight, can't seem to get anybody to listen to me at all, can't seem to connect with the people who've offered to help, even when I want to (and I don't always want to: it seems like too much explaining, mostly).  I feel like exploding just about every minute of every day, or, I feel completely absent and numb - it's one or the other, seems like.  

My dad threw my sister and brother-in-law out of the house, the night before my grandmother's funeral.  Nobody told me what the hell was going on, because, I don't know they thought I would be too upset to notice that people weren't talking to each other?  I don't know.  So I got the lowlights third and fourth hand, then when I tried to talk to people, it was a disaster and didn't make anything any clearer for them or for me. 

My mom left my dad, then came back, but only because she didn't have anywhere else to go, and then, later, because she wouldn't leave my sister and brother-in-law in the house with just him.  This was all in the days immediately after we had just buried my grandmother, so I will admit that I did not have all cylinders going.  I mostly wanted (still want) to curl up in a ball and ignore everything, because it takes so much energy, and I am plum out. 

My dad says the stress of being targeted at work (and, yes, he is being targeted at work) made him snap and... a whole load of bullshit that basically means it's not his fault, but maybe yes, he might admit that he was wrong and 'an asshole' (What he won't cop to, is that this happens All The Damn Time, and nobody feels safe around him/trusts him anymore because he's a bully).  My sister & brother-in-law immediately started looking for a new place, because, hell: who wants to live like that?  They've been thrown out twice in the matter of a year for Doing. Nothing. Wrong.  And let's be clear - they didn't do shit, he just took it out on them.  I told my mother while I was still at Grandmother's house, that I didn't want to be here either... that I would be looking for a new place as soon as I could. {Of course, that was because I forgot that I couldn't place emotional well-being above money, health and other issues without there being major sacrifices of money and health and other things, but I'm still determined to do it}  My mother told him she was leaving too, although it would be better for everybody if HE just left.  He refused/refuses to leave.

So today my sister and brother-in-law are signing a lease for their new place, at the worst possible time for them bc my sister is trying to wean off her meds so that they can get pregnant, and she could really use some backup (which is just when you should be forced to move away from people who can back you up).  She's hurt and mad at my mom for her response to this whole ball of bullshit, which I can't seem to talk to either of them about, because their both freezing me out when it comes to that.  She might even be mad at me, and since she's the one who reads this blog I'm only going to say that I hope she's not, because I feel like I'm on her side, but if she is, I hope she'll tell me so I can try to fix it.

My dad and I had a whole discussion about how mad I am at him the other day, and how it's his fault that SisterJ & B-I-L are moving and that I'm looking for a place, and that Mom is probably looking for a place too, and when my mom asked him what he got out of it he told her that he "has a big heart but doesn't use it."  Which was said once, in the midst of a three hour discussion about how badly he is screwing things up and all the things he is ruining by his behavior, and how hard it's going to be once he realizes how badly he's damaged people he's supposed to care about and how I'm too old for this shit and I'm just not sticking around anymore to watch him bully people (or to be bullied) and how he's being completely selfish, but that's what we all expect him to be at this point, so that we don't even talk to him about our shit anymore and a huge rant about how he's a total hypocrite and totally ignores the people in our family and expects us to be there for him and how he never fucking listens ... anyways.  What he took out of all of that was me saying he had a big heart, which just proves my point about him never listening, and that I really need to get the hell out of here.

Mom and I have talked - or sort of talked - about what she's going to do: she says she's going and she's done, and all of that.  But I don't know: she still seems undecided to me, and I don't know how much of that is the fact that she's changing her meds, and she's still grieving for my grandmother, too, and she seems to be leaning waaay closer to the numb side of things than I am.  Of course, complicating all of that is the fact that she's my PCA, and she does a lot more for me than the hours the state provides for her, which is pretty simple when you're living in the same house, but a hell of a lot more complicated once I find somewhere else to live.

Which doesn't even mention that moving changes everything for me, financially - I have to notify the SSI people, and Mass Health (my insurance) and the PCA program, and everybody does a whole new evaluation and yippee: more energy I don't have.  Plus, I can't afford any place to actually live on what my SSI is currently, so I have to apply for housing stipends, which means that the already complicated task of finding accessible housing (and granted, I can use non-100%accessible bathrooms, which puts me a step above other househunters with disabilities) all that much more complicated, because now I have to look for accessible housing that takes waivers/stipends from the government.  It's so much fun so far!

But here's the thing, as every fucking thing seems to crumble around me (which you could tell only by the fact that I've cursed like five times in this post, when I usually don't ever), I learned a lot about myself this summer, being with Grandmother during those five months.  I learned that I can handle a lot more shit than I thought I could, even if I have to breakdown in tears when nobody is looking.  And even if I shouldn't have to handle any of this, because it's all ridiculous and I don't want to have to deal with it, because it's hard: even though it's ridiculous and hard and stressful and I Don't Want To, I'm going to be able to do it.   I'm going to drag myself and my family through it, and eventually we'll all come out the other side, having met the challenge.

Being a grown-up sure does suck, you guys.  

A tree that looks at God all day, And lifts her leafy arms to pray*

I started this post a week and half ago.  Here's what I wrote last Sunday, immediately after a moment of Grace ~

In the middle of transitioning her from her wheelchair to her bed after this morning's bathroom break, she suddenly stopped what we were doing, looked at me and said "Goodbye dear."  I wanted to hurry her along, get her safely in bed, so I started to joke, would normally joke "where are we going?" because lately she'll say just about anything at anytime, but something about her tone was different, so I looked up from what I was doing.  I looked right at her, and she was there.  She was in there, somehow, in the midst of enough drugs to be hot air balloon-high, she was lucid enough to offer me this.  "Have a good life", she told me, reaching for a kiss.  "And no matter what, no slander from you, no slander from me.  We'll just be happy for the life that we had these three months."  I swallowed back my tears and said "Yes ma'am. Never: I love you."  "And sometimes say a prayer for me."  "Always," I said.  It was all I could say, even if I could have managed more (and there was so much more I wanted to say: I have nothing but good things to say about you, forever.  I'm not going to let these last few months smear your memory, and I know in your heart you know how much I love you.  I'll miss you.  Don't go.) she had closed her eyes again, and you could see the cloud was back. 

Now this is not miraculous, you might say, but you would be wrong: for days, in the rare moments that she hasn't been completely knocked out, we've been talking about eating butterflies and dinner parties that happened in 1969; she's been (her version of) cursing out my Uncle and I for holding her prisoner here, when she just has to "go or I'll scream"; she's been in near coma-levels of sleep for the most part, waking only when her anxiety or pain levels break through what the meds can control.  She hasn't really been lucid in over a week, hasn't been aware like she was for those three minutes, in weeks to months, really.  So those three minutes?  More miraculous than any other I've been lucky enough to live through.   

Tiny miracles: I'll take them. 

Especially now ~

 My grandmother, a great lady, wonderful mother, open-hearted, strong-willed, surprisingly versatile woman, passed away on Saturday afternoon.  She had been having some trouble breathing earlier that afternoon, so I adjusted her oxygen, gave her her medicine, offered her a weak smile: "Don't give me that fake smile", she whispered in her all of the sudden raspy voice, "You look exhausted."  "So do you," I said "Get some rest."  And then she went to sleep and I laid down on the couch maybe 5 yards away. 

A half an hour later, my uncle went in the room and called out to me: "She's not breathing; I think she's gone."  Her hands were cold, but the rest of her was still warm, that's how recently she had passed.  Within a half an hour from the time I had been holding her hand, getting scolded, giving her a kiss.  She went quietly - I never heard even the tiniest gasp - a peaceful end after all these months of drama and unrest. 
 
 Thank you all for all your support these past months: I can't express just how much it means to me.   For listening to all the ranting about dementia and how much I hate it; about the pressure and the heartache and the loneliness.  I know it's been a dark blog as of late, because I had very little else to talk about, and I appreciate all of you who said even the smallest words of encouragement - I needed them more than I could say.

I don't really know what happens now: I'm feeling such a mixture of relief and sadness and numbness that I can barely get the simplest of tasks accomplished... I know that'll wear off as the days go on.  Her memorial is Thursday & the funeral on Friday, and I'm trying to get everything organized for all of that: it's good to have things to focus on... a project to complete.  I'm going to do that for now, and think about how lucky I have been to have her in my life, for as long as I did, even through these last hellish months.  To have held her hand right before she left this world, well, that's not something I'll ever forget. 

*Trees Joyce Kilmer: a line from Grandmother's favorite poem. 

Another hellish day, but at least I have someone to talk to

 Earlier today, my uncle passed away from cancer - only the exact timing of it was a surprise, but it's still been... I don't even know, just horrible.  And my grandmother, who does not know, obviously knows something is up and is tantruming right and left, while my uncle, who's grieving the loss of his 5th brother in the past decade or so, has about zero patience left over for her, so ... it's been a challenge. The far away cousin I am closest to messaged me and said "Sending my love - hope you are all ok", and this well... this is what came out. 

Honestly, Two Shoes?  It's a goddamn mess here.

  Like, you know how I don't really curse, and all my truck driver-mouthed sisters make fun of me?  Well if they could hear the inside of my brain right now, they'd be so proud.  (And shocked, because I happen to have an extensive foreign vocabulary :) )

I don't really know anything, except that he had the last rites this morning, Katie called to see if Gmother or UJ would like to try to talk to him via the speaker phone, and gmother is in 1967 or somewhere, trying to find her "lost boys" so I just gave the phone to UJ and left him with some privacy.  He was going to try to drive down, but she called back less than 1/2 hour later and said he was gone.  She sounded... well: you and I both have intimate experience with how she sounded, and I just wanted to crawl through the phone and tell her .... I don't know what, except how much I'm so damn sorry.  And then we called the social worker, and the priest, who both said: don't tell grandmother, at least not today. 

Today was a bad day to begin with, and if we tried to tell her, well: we'd be the cruel monsters she sometimes thinks UJ is when he tells her any of the other true things about her boys.  We always go with the "they're safe, they're where they need to be" track that the hospice tells us to follow, but some days she knows that's not true, she knows so many of them are gone, but to her they are both gone and still little boys, and so she is not buying what we're selling, and maybe it's the phone constantly ringing or my face, or UJ's posture, but she ain't buying it today.  She knows something is off, and so down the wormhole we go, trying to anticipate what bomb will go off in her mind next.  Today the refrigerator was smoking, UJ had abandoned her, the lost boys purposely ran away because she isn't a part of this family anymore... just: she's not herself. 

And I promised myself that I would wait, and vent on you when your vacation was over, because ... well, VACATION. And I don't want to see her like this, and I hate having to tell other people that she's like this, because she'd be fucking pissed.  I mean: you know.  You know.

 So I figured, well, I'll just be avoid-ish and vague and hope that things get better (because I've been doing - shocker - a hell of a lot of research, and I think/hope I can figure out at least ways to make this a little less hellish for all of us) and by the time we talked next, it'd be calmer and less horrible, and Grandmother wouldn't curse at me or ask me to call 911 to find invisible children, but ... things keep going wrong, and here we are, and now she's lost a real boy, and I can't tell her, and my heart is just broken for all of us. 

It's a heart broken day, and they're not all like this: I promise.  Some days she's herself and I get to hear stories about how my father was told by some idiot down the street to stop climbing a tree in the park and came back with "It's not your tree, so mind your business."  and even though grandmother expects me to be shocked by that, and be on the adult's side, I think he was right, and secretly smile. 
Some days we spend all night emptying drawers and refilling them, looking for some small part of her life that she can't describe to me, but she knows is there somewhere... so we search.  That's one of the rare times I feel like I'm actually accomplishing something here: because UJ does not have the patience for those hours of searching, let me tell you, and I don't mind if we go through the drawer 19 times (has he never built with blocks and a 18 month old before: dump and fill, dump and fill)

And other days are like today, which is worse than normal because a)obviously, Uncle Kevin and b)during my research I found out that the meds the doc has given us for her anxiety might actually be making other symptoms worse, so we can't use it anymore.  So let's have the MOST ANXIOUS DAY EVER (for all three of us) and no calming down meds for grandmother, and neither uj or I can drink. (Send me special brownies ;) ~ we already stress ate 3 dozen cookies since yesterday morning.)  So, hence: I am sorry to ruin your vacation. 

But I can picture you reading this, and listening to me, and it does my heart good just to have it said (because I've been wanting to call, but honestly, getting on the phone in private here is harder than getting home to shower - and I haven't done that in over a week, so that shows that), to know that, even though it'll break your heart too (and I'm so damn sorry that I have to be the one to do that), I can feel you, loving us, from far away.  I'm going to take all those hugs, and send some back to you, and NOT erase the whole damn thing, because you're on vacation, even though I feel kind of like I should.  Cuz I love you, and I really appreciate the shoulder, and I need it a lot today. 

Hugs to your boys, I suppose I'll be seeing you soon, although ... i don't know how that's going to work because well... i haven't thought that far ahead yet.  But anyways... I love  you.  Thanks for listening .  Miss you much, Love, Me

Well, that was fun

So yesterday, my dad called the cops on my sister, her husband, my mother & I.

He called the cops, and told them we were "verbally assaulting him in his own home."

By which he meant, we were telling the fucking truth, in our own homes.

The cop pretty much shrugged his shoulders when he got there - we had done nothing actionable, and it was, in fact his behavior that was out of bounds: I know I never uttered a single curse, and neither did my sister.  My mom did, but that was just repeating what he'd said about her, so that doesn't really count.  And my brother in law, who is the (I can't emphasize this enough, honestly) most peaceful person ever (like, I've seen him mad may three times in the past 5 years, and even when he's mad, he's still pretty calm) had to go outside and stand in the cold to keep himself from ... I don't even know what.

I know what I wanted to do, which was rage and vomit and punch his face in and break the goddamn wine bottle into a million tiny little pieces and cry and curl up into a ball and pack all my shit immediately and move into the cardboard box that is my only other option and scream in his face and drag him to a psychiatrist and tie him into a chair & force him to watch every episode of Intervention ever.  (For the record, I did at least two of those things, but they weren't the fun ones.)

The cops told us "families fight" and told him "if you're an asshole when you drink" (Oh crap, I guess I did curse: I specifically told the cops that he was an asshole when he drinks, but it still doesn't count because I didn't curse at him), "then don't do that anymore."  He did not get the outcome he wanted, (which was them making us leave, I guess), and then kept saying how embarrassing it was that it had happened.

 It didn't just happen: You called the cops because we weren't backing down (again) about your ridiculous, abusive behavior.  You were the one who reacted like an ass because someone dared to question you about your drinking.  You were the one who went on the attack.  I wasn't embarrassed at all, to be honest.  A little let down that I couldn't say "Listen, if he opens his mouth again, I'm going to do something that is worth going to jail for" or "Honestly?  He told my mother to go fuck herself, my sister that she was a pill popping control freak, and me that I was a useless piece of shit: please, just take him with you."

I know I've talked about his drinking here before - about my issues with being lucky enough to be blessed with three alcoholic parents, in particular, so if you've been around, you know it's a problem.*  I probably don't talk about it as much as I should, because - no matter that I have no fault in it, and there's nothing I can do to stop it - it feels shameful, it feels like I should keep it quiet.  And, to be honest, it's a little embarrassing because I can't just move out and put myself in a better environment: I am dependent upon my family, financially. 

I also try not to say things that hurt people's feelings here, even though they don't read it. (And hopefully never will.)  But the truth is the truth, and I'm sick of pretending that this is not a life or death, you are ruining our family type of deal.

The fight last night was vicious.  He has this ability to take out the sharpest arrow in his arsenal, hone it to its finest point, and hit your most vulnerable spot dead center.  Tell my mom she's a drunk (although saying "you're a worse alcoholic than I am" probably doesn't make the point you were hoping for);  tell my sister that she "moved in and took over", because you know she's overly sensitive about having to live at home; tell me that I "contribute nothing but a bunch of dirty dishes", because you know it wounds me that I can't do things around the house to help out.  Make sure you dip all those arrows in as much vile poison as they can hold, before you send them.  That's his way.

And then, THEN, he rants and raves about how he has no place in this family, how he wants to be left the fuck alone, how there are no relationships left for him with us, and how that's all our fault.

It probably is my fault that I don't want to give you more ammunition to use against me.  Probably is my fault that I can't feel safe enough in my own home to come out to the kitchen if I know you're out there drinking.  Definitely is my fault that I've been locking myself in my room at night, because I don't want to be around you, because I know if I go out there I'm not going to be able to hold my tongue, and you're not going to be able to hold your temper, and we wind up right back where we are now: You got to yell and scream and curse and stab at people with your insults, and the rest of us get to wander around dazed and betrayed, stunned that we let ourselves get hurt again.  Yeah: that all seems like my fault.

It's definitely my mom's fault if she's "a cold, unfeeling bitch", because everybody wants to be close to someone who makes them feel like shit.  It's my sister's fault that she's not willing to "forget about what happened before", even though it was traumatizing to everyone (including you), and you made promises that you never kept.  It's definitely my brother-in-law's fault that he had to start shoving all his belongings in an empty laundry basket because god forbid someone should treat him or his wife with love, courtesy or respect, even though they do so much for you.

The thing is, I know, in his mind, that he's the victim in all this.   I know that because he stated it very clearly, over and over and over again last night: he was not going to be fucking apologizing for anything he said, if anything he was owed the apology from us.  Because we started it, we attacked him, and all he was doing was "cooking, drinking and minding his own fucking business."  Never mind that that business included doing the thing you promised us you wouldn't do: we don't have the "right" to hold you accountable for that.  Never mind that once someone did call you on your bullshit you started yelling, calling people names, threatening them, using your place as "the moneymaker" to try to bully us into shutting up, trying to throw us out of the house.   That's all acceptable behavior, right?

He didn't go to work today (he "didn't sleep well"), and now he's wandering around upstairs pouting, probably/I'm 99.99% sure.  That's too damn bad: I don't have any answers for you - you want a place in this family you better figure out a way to fix things, because I am D O N E trying to figure it out for you.  Yeah: I love you.  Yeah: I'll miss you if you have to go.  But you can't stay like this.  Or I can't... One of us is going to have to make some real fucking changes.  And, as far as I can tell, only one of us has done anything wrong.

And it sure as hell isn't me.

Sticking up for myself, my sister, my mother and my family?  Not wrong.
Calling your behavior abusive when it is?  Not wrong. (And not "verbal assault" either, asshole.)
Dumping your precious wine down the sink?  Probably a little bit wrong, but only because I lost my cool there: should've stayed calmer.  The dumping part I'm ok with, because Fuck That Shit.
Ignoring you now, even though I know you're just waiting for me to say something, anything, so you can either walk right in or stomp all over me again?  Not wrong.

Let me make this 300000% clear - to myself, and to the sister who needs to hear it, and just happens to read my blog - WE DID NOTHING WRONG.  It is not ok to say the things he said, no matter if we started the argument - we didn't say anything out of bounds to him, but he certainly did to us.  His bullying is NOT OUR FAULT.  THE END.

Of course, it feels like it could be our fault.  Her fault for saying something in the first place, she says; my fault for not just walking away and letting it drop, I think.  But that's just some textbook Over Developed Sense of Responsibility right there.  Over time, everything feels like our fault - when people are happy, when they're not, how they act because of their mood - all of that is not in our control, but it feels like it should be.

Example: Last night's big blow out (which follows our last really big blow out by only 6 months, with about 3 less major ones in between) came immediately following his vacation, last week.  That's 9 days of holding your breath, tiptoeing around, hiding yourself in your room (or at work, or in the cellar, or at someone else's house: Hell I even stayed later at the HOSPITAL so I wouldn't have to come home) so that you don't accidentally say something to set him off.  He, of course, doesn't see it like that, but the rest of us do.  If I'm going to keep a fight from happening I either have to a)pretend that I'm fine with the drinking and drunk him and all that comes along with that (overly affectionate fakeness, pushing food on you repeatedly, an inability to take no for an answer about anything) or b) not be in the same room with him.  I chose, for as much as I was able, option b.  For nine days.  My sister and her husband ate with him more, choosing lite option A and a huge dose of option B (cellar time ALL NIGHT LONG).  And my mom, well she usually can't get away with B, and even though she doesn't do a good job of pretending (i.e: we can all tell she's pissed off at him), he doesn't really notice, so that's the way our week went.

It was only after all that shit that my sister came home from work yesterday and called him on his drinking (A bit of an explanation first: following last ginormous traumatizing fight, he swore off drinking.  That lasted a week.  Since then he has told us that he won't drink at all.  Then he changed it to "I won't drink when I'm cooking" Then it was "I won't have more than 1 glass/2 glasses/3 glasses a night"  Last night he was at 2.5 glasses when she walked in).  And then spent the rest of the night crying, saying she shouldn't have started anything.

She didn't start it, and I want her to get that.  (Hi.  I know you get it, but you don't feel it.  That's ok, too, but just so you know: I know this wasn't your fault.)  He can lay the blame at our feet - hers for daring to say something, mine for not shutting my mouth when he wanted me to, my mom's for not sticking up for him "while I was being assaulted" - but we all know the truth about where it goes.  This is his fault, and that's all there is too it.

Another sister and I were talking recently, about babies. About how much we want them and don't have them, and are scared it may never happen for us.  (Which, let's not talk about that right now) And she said something about never letting her kids sleep over, out of fear of what his moods would be like, and it sort of killed me (because I love my niece and nephews so much and would hate not to be able to spend time with any of them), and at the same time I understood perfectly.  I want a baby more than anything, but I would never bring it into this house the way it is right now.  Never.

So don't give me all this shit about how you just can just "cook, and drink, and mind my own fucking business",  because it is my business.  Because I love you, and because I love them, and because, god damn it I'm trying really fucking hard to love myself.  And I can't love a person who lets other people walk all over them - or her family.  So, I know you're going to do as you please (who knows it better than me**), but it's not going to be crushing me anymore.  It's not going to be hurling abuse at the people I love anymore.  And if that means that I've lost two fathers to alcohol, I'm going to say that that really sucks.  And I'm going to be horribly sad.  But I'm not going to lose myself just so you can be a happy drunk.

 



*And I'd just like to say that my Mom, whose own issues with alcohol have been pretty intense and troubling, has been sober for almost four months now, and I couldn't be prouder of her.  Yes, it was a decision she made based on medical necessity, but I think every addict's decision to get sober is medically necessary, and she's working really hard on it, which is amazing. 

**My biological father slipped into his alcoholism sometime before I 9, and our relationship was rocky from that point on.  Eventually, 11 years ago this July, it took his life.

In the ball pit

I do this thing where I start thinking - really thinking - about something that's important: Have you noticed this about yourself?  Is there a reason why you have to run your mouth like that/act so awkward around new people/ be unbelievably cranky for no good reason?  And as soon as the truth about the thing starts rushing at me - as soon as I'm starting to get to the meat of the issue, or when it starts to sort of click in my head that this is not a unique occurrence, that I sometimes act like this and maybe it is a pattern... well, when the truth starts rushing at me, I start rushing away.  Is there anybody who needs tending or talking to, or playing with?  Isn't there a show on right now that I can escape into, be mindless with?  Isn't there a book I could read that would take me anywhere but here, facing the truth?  It's such an uncomfortable feeling, this realizing things about yourself, and I would do just about anything to avoid it, I think. 

When it does come, and I have seen the whole, frustrating, ill fitting truth about myself, it sticks in my brain: a large scaly burr just big enough and irritating enough to block out anything else.  I have no other qualities except  this uncomfortable truth - I am no longer a good person, a caring sister, a hard worker - I am only an inveterate gossip, a gigantic fraud, a loathsome individual who feels lonely until she's with people and then wants nothing more than to be left alone.  Even though I know that this is not true - that all the good things I am or do are not obliterated by some newfound/newly understood flaw in my character - it is how it feels, and sometimes how it feels is how it is. 

I have recently come to quite a few uncomfortable realizations about myself, and trying to integrate those things - a certain pettiness here, a confounding inability stick to the straight facts there - into my vision of who I am is proving more difficult than I'd have guessed. I have always known that I wasn't perfect ~ contrary to what others may think, I am well aware that my goody-two shoes image is just something other people see me as - I have never seen myself as such, and wouldn't really care to.  But these inconsistencies in my character - the difference between who I want myself to be and who I really am, these are things I want to fix, to change.  And that means recognizing them first, figuring out how deep they run and (maybe) where they come from, and how to stop doing them.  It's a lot of heavy mental lifting, and, for a person who has limited reserves of any kind of energy - physical, mental, emotional - it certainly seems Sisyphean. 

So I keep looking for low energy escapes - can I ever get my Google Reader below a thousand again?  Is Reddit being entertaining or insulting today?  Is there any way I can get my uncle to have a conversation with people so that they don't think he's an ogre? Let me organize every photo you've ever taken in your whole life! - and then condemning myself for needing these escape routes.  It feels like I'm stumbling around kicking at little pebbles, all the while trying to avoid all the heavy boulders I know I have to move if I want to move forward, but just can't even look at yet. 

It feels that way about everything - about all the work I have to do to manage my illnesses (and the question of when I decided that just 'managing' is enough for me), about all the things in my own behavior that I'd like to change; about all the topics in my family that need addressing, and all the ways we find of not addressing them; about not making time for friends and then wondering why they aren't making time for me; about the world as a whole and all the things spinning out of control in it.  It just feels like there's too many important things that should get looked at, poked at, lifted up and examined, fixed, and I don't want to touch a single one of them. 

A perfect example in the physical world is that my space is still not undecorated from Christmas - oh, the actual decorations are down, but the furniture is still all in the wrong places for every day living.  Thus making it more difficult to do things like get towels, because we moved the cart that holds the towels behind the chair, so you have to climb over the chair to get ready to take a shower.  It's little ridiculous things like that, but also huge life changing things like deciding to call the PT again, and see where that takes me, or actually changing my diet enough to prevent this diabetes thing from happening - and I just don't want to face any of it at all. 

And here I write the necessary caveats that "we've all been sick since Christmas! - and I mean sick sick, like the flu that won't die sick" and "I've just spent two months caring for a wonderful lady, whose head is harder than the stairs she fell down!" and "blah blah blah Chronic Illness, you idiot!" but all of that  - while true and real and just so much - doesn't feel like enough of a reason to let everything else pass me by.  I never feel like I am juggling half of the balls I need to juggle, there's just me, standing with maybe the three or four largest, most fragile balls, throwing them up and catching them (sometimes by the skin of my teeth, but still, catching them), and all the while, the floor around me is littered with a million other smaller balls.... It's basically me, standing up to my waist in the ball pit of Chuck E Cheese, trying to catch all these biggest balls, but knowing I've let a thousand more go.   And not knowing which of those thousand was the next most important - the one that needed me now, and I won't get to it for another three weeks.

I don't know what to do about all that - how to climb out of the ball pit, or juggle better, or even begin identifying the colors of all the stupid things I'm standing in.  I know this feeling will pass, or fade, because it has in the past, but it never goes away... I'm always fumbling something, and I wish I knew how to stop. 

On the plus side, we all apparently survived the end of days

In an apparent effort to ensure that a member of our family has to visit the hospital at least once every two weeks, my 94-year-old grandmother fell, face first, down the fifteen (thankfully carpeted) stairs in her home early yesterday morning.  My uncle heard her fall and rushed down the stairs, where she was gushing blood from a nasty gash on her forehead, struggling to sit up, and frantically asking him if she had gotten any blood on the new wallpaper.  (She had not, in case you, like she, care about that at all: I, in case you were wondering, do not.)

I spent most of the day today at the hospital with her, where I was shocked at her battered appearance, although, I don't know why, since she fell down a flight of stairs - she's mostly black and blue, with two huge cuts on her forehead, as well as numerous smaller cuts on her face.  Her main injury is a broken shoulder bone, which was immediately operated on, because it was putting pressure on (or cutting off ? My uncle is not so good at communicating medical stuff) an artery.  She has various pins and screws holding the arm in place, and the artery was repaired by a graft, but she's in pretty tough shape.  Between her head injury and the pain meds, she wasn't completely on target while we were there - the nurses kept asking us if she was usually more lucid, and I said that she never takes more than an aspirin and she banged her head up pretty badly, so I thought she was doing pretty well, even if she did say "Bahama" was the president, and that we were in a library that she was afraid would be closing soon.  (Also: it is December 28th, 2012 - hence this post's title.)

They're talking about weeks of recovery - hospital and rehab - and this is her second go 'round with all of that, so hopefully it will all go as smoothly as it did last time.  I'm just glad she's doing as well as she is... it was pretty terrifying to read my uncle's e-mail ( I mentioned, about the not being good at communication, right?), and then seeing her today was pretty rough as well.  But tomorrow will hopefully be a little bit better, and we'll get this healing show on the road. 

After all, we have to be in fighting form for the apocalypse, right? 

PS - why do hospitals have to smell like that?  It is hideous. 

"Being alone is not the most awful thing in the world...

You make out to do lists - reorganize linen cupboard, learn two sonnets. You dole out little treats to yourself - slices of ice cream cake, concerts at Wigmore Hall. And then, every once in a while, you wake up... and think I cannot do this anymore. I cannot pull myself together again and spend the next fifteen hours of wakefullness fending off the fact of my own misery."*




Today turned out to not be my best day ever... My original plan was to spend the day shopping with my mom and my sister, maybe have lunch, just be out in the world. (And, not incidentally, away from our house where my dad had declared he would be having a "taking care of me" weekend, the prospect of which is frightening at the very least.) But then my sister didn't feel up to going, so it was just me and my mom, who was in an off mood for whatever reason. But, equipped with lists and coupons and I even remembered to bring my own basket (mine is made of cloth as opposed to the ones in the stores which hurt like hell on my lap), we headed to our first scheduled stop, the craft store.

The store turned out to be wicked crowded and incredibly hot. And about 10 minutes after we got there, I knew that things were going wrong with me: There were a few too many smells, and too much noise, and it was so hot. I started getting weak and bumping into things, and even looking at my list, I was having a hard time concentrating on what I was looking for. I spent a while waiting for my mom to finish up her shopping, and trying not to slide out of the chair or topple over. I don't know why - it just happens like that sometimes. That's one of the things with CFIDS: you can't tell/plan when/why things are going to go to hell. It was so bad I thought I was going to pass out in the store, and waited outside while my mom went through line (she would not approve of that behavior, had she known).

I got the things I needed at the craft store, but between the intense heat and whatever was going on with my body, I was just done. Plum worn out. So instead of a full day of shopping and lunch and being out of the house, we headed home after less than an hour, where I was barely able to crawl back into bed.

A couple of hours of resting and Buffy marathoning later, I was feeling a bit better (less spinning head, more umph), so I turned the computer back on and started checking out the usual haunts. (For the record, those are basically my Reader, my mail, Facebook for chatting, and whatever other tabs I happened to not have finished the last time I signed off.) Reading through my FB activity feed, I see that one of my college friends has a new profile picture up, so I clicked on it.

And there sat nine little children on a couch, posing (as nicely as 9 children under 7 can) for the camera. Nine little children of all the girls I was most friendly with in college, our group of "Alumni Girls." The children of my closest friends, sitting on the couch of one of those friends, about oh 12 minutes down the road from where I am. Which means all of their mothers are sitting there too, and that I was not invited.

And I've missed out on a lot of things over the years - birthday parties and get togethers and weddings and whatnot - and I've not been invited to a few things too, as some of the girls and I hadn't seen each other for years, and grew further apart as time continued to pass. I know that, and, while it's hurt to have to miss things for health reasons, or because I just can't go, I've never really felt unwelcome before, never felt like I was deliberately not included.

Till today.

And I know that's not what it will wind up being - that there's no way anybody thought "Hey, let's not include NTE, because she's such a bitch," or whatever. I know that's not it. The way I figure it either my name never came up because all of my friends were arranging a playdate for their kids, and I don't have any kids, or they just decided not to ask me because the girl whose house it's at is inaccessible to me. So either I was forgotten because I'm not a mom, or I was not asked because they assumed I couldn't make it - but neither of those reasons really makes me feel all that much better.

And looking at that picture, of all those little smiling faces and bald heads and stuffed animals really just reminds me of how much I don't have, of how much I'm missing out on.

I don't have the family, or the kids. And I don't have a bunch of girlfriends that I can just have over to the house (I also don't have) whenever I want. I don't even really have anybody, outside of this computer, who will understand what it's like to not have those things. To want them so badly and just not be able to have them.

To instead be sitting here, with this body that won't even let you go unaided the 6 feet it takes to get into the bathroom, wondering what the fuck happened to the life you were supposed to have. To instead be sitting here in tears staring at nine kids - some of whom you've never even met, and others who call you auntie honorarily - and wishing there was a tenth. Wishing that their moms had thought to call you and say "Sorry you can't make it, but we'll be down the street today, want us to drop by after?" Wishing I'd managed being out in the world for longer than 45 minutes without having to rest for four hours. Wishing I knew how to get from where I am to where I want to be. Wishing I'd never seen the damn picture, and just kept watching Buffy instead, even if it was the one with the praying mantis teacher, and I've seen it 19 times before.

Just wishing.


*Zoe Heller, What Was She Thinking

"...the family disease of alcoholism... made us 'co-victims', those who take on the characteristics of the disease without ever taking a drink"*

Day 14: A letter to a hero who has let you down

I wasn't going to write this letter, but ... I didn't feel that I could skip it, since I'm trying to hold myself accountable for things. And then I thought, well, write about Obama, and how he's disappointed you as president (true), but there was no getting around the fact that if I wrote that letter (which I have composed many times in my head), it would just be a cop out: Obama is a great person, and while I want him to be an extraordinary leader, I've never considered him a hero of mine.

Instead, I decided to go exactly where I didn't want to go, and be glad to get it said here, where (almost) nobody who knows the people involved would read it. There are things I should have said that need saying, people in my life who I wish could've remained untarnished heroes to me.

The fact that growing older means seeing another side to things doesn't always mean you forget how it felt when you were younger. I don't even think it should. It's important that I remember that I once was a little girl who loved her daddy, and whose daddy hurt her very badly. A young woman who trusted that her big brother was smart enough to not stomp on her heart, and who was (unfortunately) proven wrong. A daughter who cared enough about her parents to tell them that they were ruining their relationships with everyone around them, even if those warnings were met with harshness and hurt. A friend who tried to point her friends in the right direction, but wound up watching as they stumbled the other way instead.

However, I'm going to preemptively apologize to you, the actual readers of this letter: It started off as one thing and sort of snowballed into something else. Instead of the one person I had intended to write the letter to, I wound up with a whole lot of heroes who had let me down, and they sort of made themselves known as I was going along. So the tense changes, and apparent contradictions, and utter... incomprehensibility of some portions of this letter are my own fault, but I chose to leave them in, because they meant something to me. I'm sorry if that makes it more difficult for all of you.

Dear ___________,

Let me start with this - perhaps, I understand better now, as an adult, the urge to slip into oblivion. The urge to just be numb, and not feel the pain that is life. I can understand that, and at the same time condemn you for doing it.

I can see now that there are things you may have done or that happened to you in your life that you would rather forget, however momentarily. I can even, with hindsight, see that it was those things, and not me, or my lack of something, that made you turn to the substance of your choice, no matter how it felt at the time.

But I can't ever forget that you made that choice, those choices. That you are continuing to make that choice, regardless of what I say or how I feel. That your choice took you away from me, or that it is putting space between us. An unending space, a gulf that I can't imagine ever being able to bridge or span or ford. And that I can't make you see that your choices are harmful to you and to those around you.

When I was a kid, you were ... everything. Two everythings. Three everythings. Four everythngs. All the people a little girl looks up to, the people who are supposed to do their best to look out for her, that she's supposed to be able to count on. And that four of my everythings would make the same choices, would, one by one, abandon me in a way that was heart-freezingly painful, would pick a substance over me (no matter that that isn't what you think/thought you were doing: it is what happened from my point of view) has been soul crushing.

I don't think I've made that clear enough in person, when I've had the chance, so here, let me repeat it (Yes, in the safety of this space that you will never read it, but at least it will be said): You crushed me.

You each did it individually, and that can not be overlooked, but the group of you together? Each making your own individual choices to turn away from our family and towards something ... else. Well, what that does to a girl, to a young woman, to a woman, you'll just never know.

Did you know it would end us? Did you know that it would ruin everything we had? If you had known, could you have chosen differently? How is it possible that, given all the examples, given the example of each other, you didn't know how badly it would hurt - not just me, but you, and all of us?

If a hero is someone you can look up to, there are still a lot of ways in which you all are heroic to me - your service, your support, your love, your example, your hearts, your willing hands, your quick minds - but it is that one way in which you have let me down that I have talked about today. I could sing your praises in a million different ways, but for today, just for this letter, I wanted you to know just how badly you let me down.


But I still love/d you, tarnish and all.

Love, NTE

*Adult Children of Alcoholics, World Service Organization, Inc.

-------------------------------------------------------------------------------------

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

*Caution: Very Sad Post*

This blog has always served as a kind of venting place for me - Good or bad, if I'm feeling it, chances are, you know about it. I've written too many times to count about my worries, my health issues, my family and how they are making my brain hurt (see tag "Making Me Crazy") or how they are making me smile (check out "Love" or anything tagged nephew or niece). I've tried to tell the stories of my life, as honestly as I know how - positive, negative, or somewhere in between. It's not always the easy thing to do, but I feel like that's the kind of writing I want/need to do: To share my experiences with all of you, to know that I'm extending my own community, just by living my life and talking about it.

But, like I said: it's not always easy to do, and I am now going to type a sentence it had never occurred to me it would be necessary to type... This past week, our family suffered a tragic loss: my cousin's baby was born still, three days past her due date. I ordinarily would have no compunction about talking about it here (the myriad of posts about the loss of my Nana should prove that), but every time I've sat down to do just that, I come back to this single fact: I don't feel like it is my story to tell.

It's effected me, yes: it's effected our whole family: It is a terrible and shocking sadness. And yet, my story is about how I had to sit, helpless, and listen to my uncle rant and rave about fairness and unfairness and if our family could be expected to bear anything else. My story is about how that little white box was the single saddest thing I have ever seen in my life and how I (who doesn't really believe in god) found myself praying for everyone in the church to keep standing, just so I wouldn't have a view of it anymore. My story is about how incongruous it seemed to be watching my other cousin's two year old twins at the hospital, making them giggle and reading them stories, knowing that a hallway away their entire family - my family - was being swamped with pain.

In this instance, my story is basically that I am unable to help with their story - that, aside from letting them know I love them - I can think of nothing to do to help the couple whose story is that they just buried their first daughter before she took her first breath; to help the grandparents and aunt whose story is that they never got to dote on the first baby girl for their side of the family; to help any of us because I can't answer the questions of why something this horrible could happen, why the word stillborn is still in our vocabulary in the year 2010, why nobody ever told us that being a grown up was going to this unbearably painful.

And yet: I couldn't say nothing here - I couldn't just let it pass by unremarked. I've tried to write about sixteen other posts since then as well, and each of them falls apart in my exhausted brain. So do blog comments, and Facebook status updates: I can think of nothing, really, besides: "I am sad." "If I am this sad, I do not understand how my cousins are breathing." "Did this last week really happen? Why isn't there some undo button, because last Friday is looking spectacular, comparatively?" "I wish I could help you. Please talk to me." or "Please don't talk to me, because I don't know what to say, but know that I love you. A lot."

And not mentioning it, well it seemed like lying: I am going to try to write other things this week, to post a best shot tomorrow, if I can, or point you to something awesome or funny if I should happen to be able to concentrate long enough to read it. I'm going, in short, to try to get back to the things I enjoy, and see if I can't try to enjoy them again. But it's not going to be simple, and I'm going to be dealing with this grief for quite a while. If I didn't mention it - as easy as that seems, to just not say anything, to let all of you continue to live in a world where stillborn is just a word from the ancient past - it would also feel dishonest of me and disrespectful to the stories of the people I love. I wouldn't feel like I could share my truth, my life, and if I can't do that, what's the point of this whole blog thing anyways?

So I'm going to write when I can, and I'm going to try to crawl out of the melancholy that has - rightfully so - enveloped us here this past week. And I might need your help, so I'm thanking you ahead of time for listening.

*Since I have been trying to weed through my Google Reader, attempting to read only things that might cheer me up, I've been wishing that there was some sort of warning system for posts that start out good, and then take a dramatically sad turn. So I could skip them for now, come back to them when everything in the world - including a damn LOLCat - isn't making me cry. So, I figured I'd better warn y'all, just in case.

And my alternatives would be....?

These are the kind of nights that you almost believe you made up , until they happen again.

Back when I actually talked to people (besides my family, who are just about the only people I talk to right now), eventually the conversation would turn to my illnesses and how I 'cope' with them. Some people would say things like "I don't know how you do it" or "I could never do it," which always seemed particularly wrong thinking to me because it missed the point that you don't get to pick whether you do it or not: These are the circumstances you have to live with... so get busy living. By whatever means you can.

So that's what you do. That's what I do. I just get through the days as best I can, using all the means at my disposal to try to make those days resemble - even ever so slightly - the life I want to have.

And sometimes I feel as if I am doing a pretty good job at managing things, that I have things as under control as they are likely to get, given the circumstances. That I am squeezing out bits of happiness where I can find them, avoiding unnecessary drama as much as possible, searching out moments of quiet and connection and the closest thing to peace that I can find in the chaos that is my life.

Tonight is not one of those nights.

Tonight is one of those "oh yes, your pain can get worse" nights. A night where I would've labeled my pain a 10+ on the pain scale, but I can still string words together in some semblance of sentences, so it must only be a 9+ instead. A night where I curse every medicine I take as phony, every pain management technique in my arsenal as a dud, every attempt at distraction as weaker than bringing water balloons to put out a forest fire.

And it's the steroids. I 'forgot' that steroids kick my ass. Actually I didn't forget, I just ... blocked it out, that things get this bad. Imagined that I was misremembering how bad things actually can get. I was hoping that this time they wouldn't, since I didn't have any choice but to take them. I only take them when things are desperate: when my tonsils touch and try to suffocate me, for example. In this case, because my infection went untreated for so long ("It's just fluid in your ear!"), the sinus/double ear infection raged inside my skull, causing havoc. Fearing a systemic infection and hospitalization (Zach knows me too well and was sure to explain just how serious this whole situation was, using words like "IV treatment" and "long term danger"), I conceded and agreed to take another course of the steroids.

They were a different kind then last time, a different schedule, a different dosage. And yet, the results were the same: just me and the pain, in the dark, each cursing the other.

I feel like my back has been trampled by horses, and even the slightest pressure - I am wearing a sheet, and it hurts me - is unbearable. From the crown of my head to lower than even the lowest low-rider jeans would sit, it is as if the skin has been peeled off and what's under has been flayed, as if my brain somehow turned all the pain receptors to 11 and let them do their thing.

I know if I could see my back (which, at this point would take some ingenuity), that it would look fine. Normal. Not as if wild mustang has bucked and kicked at it all night long. It will not have the deep blues and purples that you'd see after someone launches themselves down the stairs, or from an airplane, parachute-less: there's no bruises blooming to map out my pain... and yet it hurts more deeply and more completely than I could ever explain.

It's not just my back, that just happens to be my worst area, the section of my body where there's no safe patch, no less painful zone. My legs, for example, have 'tender' spots, but there are also places - the side of my calf, the top of my foot, my pinky toe - that aren't battered and busted. On my back, there is no quarter.

Pain can do remarkable things - it can make you roll over, make you shake, make you vomit, make you cry, even make you see the sun rise - and I work so hard at trying to tame it, trying to control it ... even just a little so that it doesn't control me, but on nights like this I feel as if there's no point - sometimes pain just wins.

And that makes me think about all the people who say how they could never do this, because I wonder why they think any of them would get a say in the matter.


I can't do this either. Except that I am. Except that I have to. Because there's no other choice.

Always surviving

Today, my aunt packed up and headed back to Ohio at some ungodly hour of the morning, and after she left, my Grandmother knocked on the den door, came in and sat beside me on the bed. "I just said good-bye to Mac", she said, her voice low and thin.

I put my head on her shoulder, she put her head on mine. A few minutes later, she whispered "I just don't know if I'm ever going to see her again."

She was crying as she said it, and her tears made me want to flinch they were so heavy.

Then her hearing aid whistled at us, and she collected herself, pulled herself back in, saying that she shouldn't be leaning on my shoulder, because it hurts me.

As if I care.

But she bustled out, and I knew she needed to be alone for a few minutes: Because sometimes you just can't cry in front of other people; because sometimes you're afraid you might not be able to stop.

I sat on the bed, in the dark early morning, with the stupid birds chirping away outside the window, and the light trying to creep in through the cracks of the shades, and I thought about what it must be like to have to say goodbye to your child, never knowing if you'll see them again.

Of course none of us ever knows, but we each have our own false comforts of being young, or healthy, or knowing that you only have to wait till tomorrow, or that you're right down the street, or that you've had all your shots.

I thought about how scary it must be to have lived long enough to know that it doesn't matter how safe you are, how old you are, how prepared you are: no matter what, life and death happen. You can't control them.

To have lost everyone who came before you, to know there's nobody left between you and what comes next ? How frightening it must be to be 92 and to know that whatever time you have left, it's not going to be enough.


It's scary for me to think about that, to try to imagine my world without her, but I've scraped together the remnants of my own naive beliefs, and I wrap them around me like a cocoon of denial... it hurts too much to go there.


I can't imagine what it must be like for her, without the comforts -however false - to protect her heart.

After a while, I went out to the couch where she was laying down and I just sat and held her hand. The tears slid from her eyes, backwards toward the pillow, slowly now, but I could tell she'd been crying harder, by the dampness on her pillow.

She apologized for getting me up (again: as if I care).
"I love to see them come," she said, "but I hate to see them go."

And we were both silent for a while, and I can't be sure what she was thinking, but I know that I was thinking about all the people who've gone and never made it back: Three of her children, my father included, 10 years ago this week. Her husband. Her mother, her grandmother, all of her siblings. Nana. Uncles and aunts, cousins and friends.

People you said goodbye to like it was any other day, only it turned out not to be. People you clung to as you said goodbye, knowing there'd be no tomorrows. People you waved away, absentmindedly, only to regret it forever.
People who just... left.

And I thought about how brave you have to be to let the people you love out of your sight, even for a moment. Why can't we all just sit around holding hands all day, every day? (Yes, I realize that we'd all go crazy within 10 minutes, but still...)

She lost her mother when she was six years old, and she's managed to make it through everyday of the next 86 years, knowing how fragile life is, but not being able to do anything about it besides live. I know it's all we can do, but sometimes it seems like SO MUCH, like TOO MUCH. 86 years and counting of risking, and loving, and wishing and lasting, and trying, and fighting and fearing, and hoping, and just ... being.

And surviving - sometimes curled up in a ball, and other times with arms open wide - but always surviving.

“As our society grows more and more health-conscious, good health, too, becomes a virtue, and its absence a vice.*”

I used to be one of those people who watched a lot of nothing type shows - the gossipy ones that run between 6 and 8 - simply because there was nothing good on and I was too tired/sore/sick/whatever to even think about doing anything besides watching TV. At some point, though, those shows just crossed my own personal lines from 'I certainly don't need this information, but it's kind of fun and random to know stuff like whose birthday it is or when I can expect the newest version of Star Trek to hit the local theater' to full out 'I wish I didn't know these things. I don't know why they have to be so mean. I really should stop watching these shows, because it's just upsetting how often they call skinny girls fat or pretty girls ugly or question whether or not someone is gay.' I would end the shows feeling so much worse about the world in general that I just decided to not watch them anymore (Thank you, Tivo for saving me from the wasteland that is the 6-8 time slot in our neck of the woods.)

The worst offender in the Access Entertainment Inside Hollywood Edition Tonight millieu was the most recent (at least to me) addition: TMZ. Not only did they make every slightly positive story seem sarcastic and unnecessary, they were often offensive, rude, and it seemed to me there was even less actual 'reporting' than most of those type of shows require. As if any day's story could be "Based on the information we got from a local coffee barista..." or "You know, my 14 year old nephew has a hunch that..." Perhaps that is a slight exaggeration, but you get the point: I just didn't like the show. Not my thing, no big deal... I know how to change the channel. If you enjoy it, good for you: we'll agree to disagree.

All of this is just to preface that, had I known that the link on AOL was pointing to a TMZ story, I would not have clicked on it in the first place. But also, it serves as a reminder to my own damn self that, having clicked on the link and found out it was TMZ, I should immediately have closed it and NOT KEPT READING.

Of course, if I had closed the tab, I never would've been able to enjoy the wonderful - and supportive - comments of the TMZ commenters. Which, while that might have been nice, and helpful in my efforts to remain sane, would also have created a world in which I do not want to viciously punch people that I have never met, because of their Temporarily Able Bodied prejudice against people with disabilities. Yes, yes: I agree, we all would've been better off.

But I didn't close the tab, which means I got to read such beauties as -

Americans w/Disabilities Act= another lame, retarded (pun intended) law which wastes taxpayer money and opens the door further to ridiculous lawsuits which are further degenerating the judicial system.

I'm sorry you're so bitter and angry about being disabled but it's not all about you and your disability!! Idiots.

in regards to a story where two individuals with disabilities - both wheelchair users - are suing CBS studios because of the treatment they received during a recent Dancing with the Stars taping. (While DWTS is on ABC, it's filmed at CBS, FYI. Maybe I could put more acronyms in here, OMG.) The suit claims that there's no designated accessible seating, that the two disabled men were specifically placed out of cameras' sight lines, that one of the men was seated in a place where he could not see the show at all, and that a camera man threatened to 'run over' the one man's guide dog as it sat in the aisle. The men are suing for damages, and for permanent changes to CBS studio policy regarding their lack of compliance with ADA guidelines.

Ok, so what could the commenters be berating, you might wonder? A whole damn lot, it turns out. I know I've ranted before about Disablism/Ableism, but these commenters manage to use every ableist argument in the book - from "I'm not prejudiced but..." to "Disabled people all should die" - and so, another rant seems long overdue.

Matthew seems to think the suit makes sense, because

They have a disablity and they are different from the rest of us.

But he'd also like to note that

They are smart to not put people in the wheel chair in front of the camera, but the camera doesn't have record in that direction

. Good thinking, Matthew! Don't TELL them that discriminating against them, and it won't count! Moxy was more explicit in his/her condemnation of their attempts to be treated as all of the other audience members, however:

Why would anyone at home want to look at a couple of limb-less cripples in the audience?---TV is escapism, no one wants to see you guys (yes, I went there!).

Lil wants us to know that she's "all for equal rights"

but when they go and ask for damages sorry that is a clear indication that they just want to get paid. A true and honest fighter for equal rights does it for equal rights not for the big bucks.

There seemed to be a lot of commenters who shared Lil's low opinion, that the men should just fight out of a need to see justice done. That the changes would, of course, be forthcoming if they just reported the misconduct to the appropriate authorities. Because that is the way the world works for PWD, as we all are aware. It's just my cynical mind that thinks if they had just sued to change the studio's policy, there wouldn't be quite so much coverage of it, but that's just my warped mind.

Lil continues to make her position clear, stating that

Im so tired of people taking advantage of others in this case Im on both sides. These 2 should not have been treated this way but these 2 should also not be sending such a negative message " oh i didn't get to go in first? I wasn't treated as someone special? (that is not equal rights just so you know) well screw you im gonna sue you for some money.

That's right, Lil: it's not "equal rights" we want, we want to be "treated special." And by "special", of course, we mean things like being able to see the show we came (I had originally put 'paid' here, but turns out the tickets are free) to see, and not being threatened by the staff. How dare we??

More than one commenter echoed Hawks' opinion -

Well, gee - I guess everyone can't do everything and go everywhere

As if the two men should've known better than to try to venture out in public at all, because HELLO - They're disabled. Don't you know disabled people don't go anywhere??? (Or, at least, they shouldn't.)

Sarah thought it was important that we know

If I was disabled, I'd kill myself.

Not that she was suggesting that anyone else do that, of course, just that if it was her... But since these two gentlemen didn't have the good grace to kill themselves before attempting to attend a TV show taping, they decided instead to

probably file(d) this suit not so much about the way they were treated, as the fact that they got a little bitter about the fact that the closest the will come to dancing is throwing themselves on the floor and flopping around like fish

. I hadn't really thought about it that way before, explodingchicken: I'm sure you're right, and they deserve your disdain. They couldn't have simply wanted to enjoy the show like everydamnbody else, and, when they were prevented from doing so, been reasonably upset. No, that makes no sense. It's much more likely that they were jealous of the dancers, upset by their own conditions, ashamed and bitter about the lives they lead. We all know that the disabled life is not worth living, after all.

But you know what? Perhaps I'm taking this too seriously. I mean, after all, who cares about one little dancing show, one little incident? I don't happen to care about DWTS at all, and I never go to TMZ, so why does it even matter what a bunch of their commenters think?

It matters because there shouldn't be a NEED to sue, some 19 years after the ADA was passed, to get into a building that is seating the public. It should be automatic that there is seating available, in places were wheelchair users can access and enjoy the events. But it isn't. We are the public, just as much as anybody else, and that's why it matters.

It matters because these are the things that real people still, in 2009, think about disability, about PWD, and about our place in society. That we shouldn't watch shows about dancing if we can't dance the way they do (in which case, why are any of you TAB people watching - 99% of you couldn't do those moves if I offered you $1 million, now could you?) That we shouldn't complain if we're treated unfairly. That asking for fair and equal treatment is, in fact, only code for the special treatment we feel we're entitled to. That we're asking for more than our 'fair share' by asking for reasonable accommodations - after all, we do get those nifty parking spaces, as many a commenter reminded me. That since we have disabilities, we are automatically assumed to be unattractive ("they only put the ATTRACTIVE people on camera!")


That we need to be "put to sleep." (Thanks, Tru Conservative!)

And it matters because it isn't just a bunch of random internet assholes who think this way either: Even the New York Times was explaining this week that the lives of people with disabilities are different and just plain less.

Those aren't things that people used to think, or attitudes that used to exist: those are things people are saying about people with disabilities today, tonight, right now. And, yes, there were also a few posts by those who were appalled at these type of comments, those that seemed shocked that those attitudes still exist, those who stood up for PWD - whether they were disabled themselves or not. And that is wonderful, to have advocates, to have people who recognize all of the FAIL that is included in those comments.

But the advocates, the people who understood were far outnumbered by those who didn't. Who never tried. Who won't understand a word I'm writing in this post.

And if that's not scary, I don't know what is.



Title quote from The Chronic Illness Experience: Embracing the Imperfect Life, Cheri Register.