Love & Anger

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In the year-plus since my mother-in-law was moved to a memory care center, we’ve been kind of…giddy…I guess you’d say. We’re certainly not happy that her Alzheimer’s has brought her, and us, to this stage. But now that we are no longer in charge of her daily care, we’re experiencing this sense of “WE MUST DO ALL OF THE THINGS!” Because we spent so much time having to turn down invitations, or scheduling any outings well in advance so as to make sure that family members could fill in for us, everything is suddenly POSSIBLE, and so we’re giddy with all of the possibility.

Just in the last couple of weeks we’ve been to King Richard’s Faire, to a family BBQ, to the theatre with friends, and to Maine. Which maybe doesn’t sound like a lot to most people, but when you’ve spent most of your evenings and weekends pretty much completely housebound, getting to do two things in the same week is an embarrassment of riches.

The problem with this is the effect it’s having on our cats (Foot Foot and Mephisto, also known as “The Assholes”). They have grown quite used to having us around all of the time. And they’re NEEDY. You would not think this, as cats have the reputation of giving no fucks about the people with whom they live. The Assholes are not like this. We rescued them as ferals, and “socialized” them to the point where they are psychotically devoted to us (well, in point of fact Foot Foot is psychotically devoted to Kevin, and Mephisto is psychotically devoted to me). They greet us at the door, they hit and headbutt us when we are not paying sufficient attention to them, and they engage in unprecedented displays of assholishness when displeased.

The Assholes

The Assholes

So we’ve been out a lot lately, and this displeases them.

We went to see The Decemberists the other night. They were playing at a venue out in the “Waterfront District” of Boston (an area which used to be pretty bleak and remote until it was determined that it was the New! Hip! place to live in recent years, and has been developed accordingly). We dickered somewhat on transportation. We both work in town, sort of in-between Back Bay and the South End, so a trip to what used to be known as just Southie (which is NOT the same as the South End, so don’t get those confused if you find yourself visiting here, folks) is something to be strategized. We reckoned that we could leave the car where we usually park (the garage under the Christian Science mother church), walk to the Back Bay Orange Line stop, take the Orange Line to the Red Line, get off at South Station, and have a pleasant stroll down to the Pavilion. A mile-and-a-half stroll, to be exact. But whatever – we’re healthy, it was a nice evening, so this is what we did, rather than drive to the lot across from the Pavilion.

Have you seen The Decemberists? They’re really good, and as my family in Montana likes to remind us, Colin Meloy is from Helena. They’re really good, and they play for a long time. Like, a good dozen songs from the outset, and two encores. Awesome!

Two things kept me from completely enjoying myself. One – I had contracted the gack which had been going around my department for days prior to the event. I had begun to expectorate like an opened fire hydrant, and was getting hoarse and chilled. Two – we had been away from the house, and The Assholes, for well over 12 hours. As the set went on, I felt myself getting more and more sick, and more and more concerned about The Assholes. And when I say “concerned about The Assholes,” I mean “concerned about what The Assholes are doing to express their displeasure at us.”

The Decemberists premiered a new song! I thought, “This is so good! I love them! I wonder what The Assholes are doing!”

Colin Meloy made a joke about Donald Trump! I thought, “He’s so funny! I bet we both shopped for Christmas presents for our grandparents at Hennessy’s! I practically KNOW HIM! The Assholes are probably SO MAD at us!”

They played The Rake’s Song! I thought, “Oh, wow! So many DRUMS! The stage lighting is all RED! That’s what The Assholes are feeling right now! RED, RED RAGE!”

By the time the show concluded, it was almost 11pm. If we’d parked right across the street, we probably could’ve been home by 11:30. But we had to walk back to South Station, wait for a train, then wait for ANOTHER train, and then walk to the garage under the Christian Science mother church. We didn’t get home until 12:30…..some 17 hours after we’d left the house, and The Assholes. As we got out of the car, I said, “They are going to be SO MAD. So, SO mad.”

“Yeah. They are.”

They were practically right at the door when we opened it. Mephisto looked wild with righteous indignation. Foot Foot glowered. I promptly rushed into the kitchen to fill their bowls, and chattered and cooed, saying, “I KNOW we were gone a very long time, but I TOLD YOU THIS when I left this morning.” I left them eating, and went into the bedroom to change.

And that’s when I saw them. Two perfectly-formed, perfectly-placed turds on my side of the bed, just under my pillow.

It could have been either one of them. But I’m going to guess it was Mephisto.

Assholes.

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Hey! So one of the things I did a few weeks ago was go to this software conference I go to every year. We have a band where we play covers, only we rewrite them so they’re about the software. That’s me on drums.

I didn’t suck nearly as bad as I thought, and The Assholes didn’t poop on anything when I got back, but that’s because Kevin was home with them.

On cruelty

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I spent a lot of this weekend thinking about cruelty.

It started with a viral video from a YouTube “comedian” named Nicole Arbour. I’m not going to post it here; Google is your friend if you must watch it for yourself. It’s not often I’m utterly blown away by a deliberate act of meanness such as this one. The video, entitled “Dear Fat People,” is a six-minute journey into the unbelievably puerile mind of a pretty young woman seemingly hell-bent on being as vicious as possible, while calling it “satire.”

I’ll give Arbour this: she clearly knows enough about social media to grasp that being really offensive garners more hits, and therefore more followers. This breathtakingly nasty little video has had 1.2 million views in the last four days, and has naturally rallied the Twitter Justice Troops to – in the vernacular of the medium – “drag her ass,” or call her out for, well, kind of failing at that whole empathy thing.

It’s always interesting when this happens. I find myself being secretly thrilled when a dragging takes place, even as I recognize the futility in shouting into the wind, as it were. You can’t really shame someone who isn’t particularly ashamed of herself, as is the case with Arbour, who steadfastly maintains that she doesn’t give a “fuk,” and furthermore has done a unique public service in telling fat people that they’re gross, because now maybe they’ll lose weight. Or something. (This is also known as being a “concern troll.”)

An interesting, if disturbing, thing invariably happens during a dragging. People are outraged over an act of cruelty, and in their outrage tell the person who committed the act a number of rather cruel things. Arbour, for example, has already been told countless times to kill herself. She’s been told she’s a slut. Her own personal appearance has been ridiculed. In the shrieking vortex that is currently Nicole Arbour’s @ mentions, there are very, very few tweets that could be construed as constructive criticism of her “comedy.” And so the cycle of cruelty continues.

I’m not innocent of jumping into these situations, myself, although I can say with certainty that I have never told anyone to kill herself because I didn’t like something she wrote. Likewise, I don’t believe that there are very many situations in which someone deserves to lose his or her job over a lapse of judgment on social media. But I have definitely taken a seat in the Internet Kangaroo Court, and I have definitely appointed myself judge, jury, and executioner. And it’s not something I’m particularly proud of. I’ll say that it’s intoxicating to engage in it. And it’s also very easy to convince yourself that you’re doing the right thing, or at the very least you’re not doing anything particularly wrong.

So I spent the weekend following the Nicole Arbour thing, reading the thinkpieces and watching the rebuttal videos, and cautiously engaging in dialogue about it: why do people like Nicole Arbour think that cruelty is the most effective means of getting a point across? And generally what I heard back was: SHE’S TELLING IT LIKE IT IS.

In the midst of all of this, I got a notification on Facebook that someone had posted to a group I belong to. The group is named something like “You Know You Grew Up In ____ If…”. There are scores of such groups on Facebook. You know you grew up in your town if you went to such and such and bought this or that. You get the idea. And the post was this:

Does anyone remember “Crazy Mary”?

Crazy Mary used to ride her bike all over town. She usually had various bags tied to the handlebars. Her clothes were dirty, she was dirty, and there were all kinds of rumors as to how she got that way. As kids, we’d sing the little bit of Miss Gulch’s incidental music from The Wizard Of Oz whenever we’d see her go by. I also remember a junior high classmate dressing up as her, complete with broken glasses and dirty raincoat, for Halloween, to great appreciation.

My mother corrected me one afternoon when I declared to have spotted “Crazy Mary” downtown: “Her name is not ‘Crazy Mary,’ it’s Kay. And to YOU, it’s ‘Miss Kearns.’”

Kay Kearns grew up in our town, the youngest child of a prominent businessman. Graduated from the high school in 1954.

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Kay went on to get degrees in Biology, and worked as a bacteriologist. Top of her field. But her fiancé was killed, her father died, and Kay simply was not able to cope. She lived in the family home, long after the utilities had been disconnected, cooking for herself on a little Hibachi grill. The house burned down, and her parish chipped in to buy a trailer to put on the property.

I began talking to Kay when I was in high school. I worked in a bakery downtown, and Kay would come in to buy a small blueberry muffin (“heated, with one pat of butter”) and a cup of coffee (“with just enough cream so that it is the precise color of that brown sign behind you”). She was quite adamant about the coffee. If it wasn’t the right color, she’d make you dump it out and start over. For some reason, I was the only one who could get it right the first time, every time, so she’d insist on my waiting on her. She was always polite and well-spoken when I’d take her order, and so long as you were pleasant and polite, she’d have no beef with you.

But she made me cry, once. I saw her coming in, and went to fetch her muffin and coffee. I pushed it across the counter to her. “Here you are, Miss Kearns,” I chirped, thinking I was being nice to have noticed her coming in, and even nicer still that I remembered what she liked.

She scowled at me. “Do I not warrant the right to order for myself? I didn’t ask you for this.”

I stammered in protest. “B-b-but I thought…”

“Pour that out and put that away. I want you to ask me what I would like.”

I dumped the coffee, put the muffin back in the case, and – shaking – I took her order. Small blueberry muffin heated with one pat of butter, and a coffee with cream, the precise color of the sign behind me. I gave it to her, then went into the back room and cried.

She was right, of course.

Kay died in 1990, when a small fire she’d lit in her trailer for warmth wound up burning it down with her still in it.

I think about Kay now, and I am filled with sorrow for the way so many of us treated her. So much of the cruelty heaped upon her was our doing. No matter that we thought it was “funny.” No matter that we were just pointing out the way it was.

Now, we think we know better. We think that we would have been able to help Kay, somehow, or at the very least not have been so ugly to her. Because it’s not okay to laugh at mental illness, right? Generally speaking. Right?

But it’s still okay to laugh at fat people, especially if we couch our derisive laughter in “concern for their health.” It’s okay to make a six-minute “satirical” video complaining about having a fat person sit next to you on an airplane, and then it’s TOTALLY okay to claim that everyone is “too sensitive” when you’re called out on it. Because you’re TELLING IT LIKE IT IS. Comedy!

Anyone who knows me knows that I’m not exactly the most PC person in the world. I laugh long and uproariously at all manner of inappropriate things. But there’s comedy, and there’s just viciousness for the sake of getting attention. I’ve been on the receiving end of that. I spent a good couple of years being bullied by classmates who, on the rare occasion I’d muster the courage to defend myself, would tell me precisely what Nicole Arbour and her fans are saying now: “It’s a JOKE. You’re so SENSITIVE.” Bullied, then gaslighted. Bullied, then gaslighted. Over and over again, until I wound up transferring to a different school. I spent a long time questioning whether or not it was as bad as I’d remembered. It was only fairly recently that all of it was validated for me in a very profound way. It did happen, and it was that bad. So I no longer question myself when it comes to recognizing cruelty for what it is.

The Walk

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I’m on “staycation” this week.  I started with a bang, by getting my medical stuff in order for another year.  Physical, then mammogram.  Because I know how to party.

I had a Come To Jesus moment with my primary doc.  While I’m basically healthy (perfect blood pressure, cholesterol okay, nothing terribly alarming in the blood work), a few things came back which need to be addressed.  I’ve been anemic my whole life, but am now on mega-doses of Vitamin D, since my diet has been – admittedly – pretty crappy over the last few years.  I’m also now on prescription nasal spray, because I’m a pretty princess.  I’ve got swollen lymph nodes, not a total surprise, since this is also a chronic problem I’ve been dealing with since I was a kid.  TMJ, likely caused by stress.

And I need to lose weight.  Also not a surprise.  My doc hadn’t been terribly adamant about this until this most recent appointment, knowing the pressure I was under the last few years when I was still a caregiver.  But now that my mother-in-law is in a memory care facility, it’s time to deal with it.  Doctor’s orders and all.

I put on about 35 pounds in the years since we moved in to take care of her, mostly from stress-eating and not making time for myself to properly exercise.  I became extremely depressed in the final year she was living with us.  In the year since she moved into memory care, I’ve taken off about 7 pounds.  My doc would like to see me lose another 10 – 15.  I’m older now, and also on medication which slows my metabolism.  But what I’m being asked to do is hardly impossible.

I’m not obese, but I’m not at a particularly healthy weight, either.  I managed to stay connected with my recovery community, and therefore stayed sober throughout, but I fell back on other bad habits I’d worked so hard to keep under control.  Most of what I am dealing with is reversible, or treatable.

But as it stands, I’ve got extra pounds on me, and that feeds into my body image issues.  As much as I rally for body positivity, I fall short of the glory when I look in the mirror and start in on myself, saying things I would never, EVER say to a friend or loved one.  And that sucks.  I feel like I took so many steps back, that even the smallest step forward is barely noticeable.  I have so much work to do on myself, almost more than I did when I first got sober, to be honest.

I say all of this because it’s important for people to realize that caregivers of people with Alzheimer’s or other forms of dementia rarely emerge from caregiving without health problems of their own.  Are there things I could have done differently during those years?  Of course.  Ultimately, I chose to overeat.  I chose to sit on the couch and watch movies after putting my mother-in-law to bed, instead of taking that time to take a walk, or go to the gym.  I chose “comfort.”  I chose to believe that what I was doing was “self-care.”  I chose these things because I was in an incredibly stressful situation, and my coping mechanisms were compromised.  Even if I hadn’t fallen back into my food issues, I would still be dealing with the near-crippling anxiety, the TMJ, and – arguably – the elevated blood pressure.

Certainly everyone who knows someone with Alzheimer’s is affected in some way, but it’s caregivers that really take a hit.  I am no hero for doing what I did.  If I knew then what I know now, I probably wouldn’t have done it.  I’m being honest.  But it has made me more of an activist than I would have been if I hadn’t packed up the trappings of my hipster urban lifestyle to move to my husband’s childhood home and help take care of his mother.  And I see what caregiving is doing to friends of mine who don’t have the options we did.  And at least once a month, I get an email from someone whose parent has just been diagnosed.  Alzheimer’s is this vaguely awful thing that we don’t really understand until we’re in the throes of it, and see what it REALLY does.  And it’s fucking terrifying.  I cannot stress that enough.

I am doing the Walk again this year, as I have done for the past several years now.  And I intend to be even more of a voice for the people who are too exhausted to speak.  I’m lucky.  With the help of a Geriatric Care Manager, we were able to determine that we had the resources to move my mother-in-law somewhere safe.  I did not have another year of caregiving in me at the end, but I had choices.  So many caregivers don’t.  Raising funds and awareness is not simply for research towards a cure, it’s also to provide more resources for families and caregivers.  They need help, and they need to know they’re appreciated.

Dear Friends I Saw Play Last Night –

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What a great show. Seriously. You all transported me for roughly an hour back to a place where music was pretty much the only friend who’d never abandon me. Sometimes you forget how important certain artists/albums/songs were in your formative years. Last night was a nice reminder.

But when I saw you after you’d finished playing, I was stiff and awkward and not as animated as I usually am.

I feel bad about this, so this morning I’m going to try and explain.

You all know I’m sober, and have been for a number of years now. Even with that amount of time under my belt, I have to make difficult decisions when it comes to being social. I have learned that if I’m feeling even a little bit like I’m going to be uncomfortable, it’s usually best for me to stay home. I ignored that niggling little feeling last night, because I really, REALLY wanted to see you play.

I won’t say I made a mistake, because I didn’t. You all delivered, and then some. But as the tiny club filled up, I felt myself shrinking up against the wall, trying to find a little elbow room for myself, trying to ignore the smell of everyone’s drinks, praying that something wouldn’t get spilled on me. I kept imagining that happening, and wondering what I’d do about it. It didn’t even happen, and yet I found myself as tense and miserable as if it HAD.

I won’t lie; I very much wanted to bolt. I was ready to tell my husband that I’d take the T home. I hadn’t felt that uncomfortable in a long time, and it scared me.

Fortunately, my husband can read me astonishingly well. He found a table for us further back, not so far away that we couldn’t see and hear you, but enough away so that I could breathe without smelling beer/whiskey/fruity alcoholic concoctions. Enough away so I could feel a little better and in less danger of being jostled. So I got to watch your show, and it made me really happy.

But I still felt bad. I felt bad that people have to make concessions for me, the non-drinker with considerable anxiety issues who doesn’t want to be a drag, truly. I feel bad that sometimes I have to ask people not to drink around me. And I get tired – really tired – of feeling like I have to explain myself.

So by the end of the night I was exhausted from – as needlessly DRAMATIC as this sounds – just trying to keep it together for the few hours we were there. Resenting every glass of beer sloshing in front of me. Not wanting to hug people because they had drinks in their hands and on their breath. Feeling stupid and infantile for feeling resentful and wary. Knowing that I can’t expect everyone around me to change the way they live to suit me, just because I can’t drink. Not understanding why, after 13 years of not drinking, this shit still sometimes GETS TO ME. Well, understanding WHY, but being mad that it has to be this way. I’ve always said that I never wanted to be a “normal drinker.” I always wanted oblivion. But last night I really wanted to be normal. I wanted to be normal so badly I could taste it. Not just so I could drink. So that I could feel like not wanting to crawl out of my skin.

And so I wasn’t particularly effusive after your set. I could tell how happy you were to see me, and I felt like I couldn’t muster half of your enthusiasm. Please know, friends: I love you. I love the work you do and the passion with which you play. For an hour or so, I was transported. But I crashed hard. And so you guys got a tepid hug and a wan smile when I should have been jumping up and down and squealing. You didn’t deserve that.

The next time I see you I will jump up and down and squeal. Because what you all did last night was incredible. I mean – spot fucking ON. I love you guys so much and am so grateful that you’re my friends.

This is me, usually. I swear:

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What about Bob (or: Staying Sober In The Zombie Apocalypse)

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I’ve had kind of a tumultuous past week+, so I’ll try to make as much sense as I’m able.

My mother-in-law is in the hospital with pneumonia. This is, unfortunately, very common with Alzheimer’s patients. Dysphagia, or difficulty with swallowing, happens in the later stages of the disease, causing people to aspirate and therefore develop pneumonia.

(This is yet another reason why I have little-to-no patience with Alzheimer’s “jokes” — like when people say they have Alzheimer’s because they lost their keys. Just…no. Stop. It’s not only not funny, it displays unimaginable ignorance as to how horrible this illness really is.)

She is bouncing back fine, and was cheerfully confused when we went to visit her yesterday, but will now have to be on a fairly strict puréed diet. It’s simply one of those things we now know to expect.

So while it was a mostly pleasant visit, it’s one of those things that remind me that my life is still not “normal,” in the sense that once you’ve committed to caring for someone with this disease, you can’t ever go back to where you were prior to taking on the responsibility, even when you are no longer an in-home caregiver. This is probably going to happen again. Or something else will happen. We’ve certainly learned that there are no shortage of rugs to be pulled out from under us.

I was still recovering from a conference I’d been to last week, which was book-ended by air travel snafus going to and coming back. Some air traffic control mess outside of D.C. caused my flight to the conference to be delayed several hours, and severe weather caused an even longer delay coming home. I didn’t hit my own bed until around 2:30 in the morning on Friday. The conference itself was great, but every day was scheduled such that I was up early and in bed late. I think I averaged maybe 4 hours of sleep a night. And maybe some of you can function fine on that, but this girl cannot. So I spent most of my first day home asleep either in my bed or on the couch.

I roused myself sufficiently to attend Walker Stalker Con (which my sister and I had been planning on since LAST year’s Walker Stalker Con) on Saturday. Among other cast members, I got to meet Lawrence Gilliard, Jr.

CNDFRwkUkAAHUcmHis character, Bob Stookey, an Army medic prior to the outbreak which has created the zombie pandemic in the series, is also an alcoholic. I found Gilliard’s portrayal to be spot-on and incredibly moving, and when I met him on Saturday, I got to tell him as much (I may have gotten a little weepy as well). He was really happy to hear this, and said, “You know, I figured, in this alternate universe – you know there’s gotta be people like that out there in it. I wanted to do that justice.”

I’ve thought a lot about that since Saturday. It’s sort of comical. Like, where are you going to find a MEETING in the zombie apocalypse? And if you did find a group of recovering addicts out there, what are you going to talk about?

“I took this walker’s head off with a mop handle, and while I KNOW I did the right thing, I just keep thinking about how GREAT a glass of Scotch would be.”

“Wow. I so relate. I had to shove a crowbar through my coworker’s skull, and I have SUCH a resentment about it.”

I kid, but I’m also kind of serious. I THINK ABOUT STUFF LIKE THIS. Especially now that the companion series has started and one of its principal characters is a drug addict. We’re not exactly equipped to deal with even mundane things like paying bills without wanting to anesthetize ourselves, and here are these characters trudging a Road of Happy Destiny that’s strewn with big globs of gore and severed body parts. It gives one pause, it really does.

And it comes down to survival, doesn’t it? We’re faced with a decision. We have to make that decision every day. Drink or don’t drink. Use or don’t use. Live, or die. Maybe it’s not quite on the level of…magnitude…as a zombie apocalypse, but…you know, actually, it really kind of IS. Let’s not even get into the parallels of substance abuse (and the way it can render someone who previously had been vibrant) and being a shuffling, unfeeling walking corpse. Let’s not talk about insatiable need. Let’s just talk about getting through a day without being destroyed by something inside of you. About finding the people who’ll survive alongside you. About the importance of connections, even when shit is falling down around you.

It’s not that much of a stretch. Not to me, anyway.

In recovery, I’ve absolutely learned that I can survive just about anything without drinking. I can sit with discomfort. I can handle 4 hour delays in the middle of a lightning storm at the Orlando airport. I can be present just sitting with my severely-addled mother-in-law in an unfamiliar hospital. So, you know, I could probably deal with zombies.

It’s just too bad that Bob had to die on the show.  We would have stuff to talk about.

Today’s Rant

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Most of the time, I feel supported, if not entirely understood, in terms of my being open about addiction and recovery. Friends and loved ones take the time to read what I write, and engage in respectful, supportive discussion.

It’s enough to make me feel pretty good about what I’m doing. That’s why it’s always a punch to the gut to hear someone describe people like me in some really unflattering terms.

I’m still reeling a bit from seeing a thread on a friend’s Facebook wall last week. My friend was wondering why some people “look down” on those in recovery, and those who are still struggling. And a friend of hers went on a rant about how addicts will ALWAYS fail, we will NEVER recover, and we’re basically doomed to die terrible, scumbag deaths.

And it’s just…sigh. You know, I get that the majority of non-addicts out there still believe that this is a moral shortcoming, that we’re a bunch of pleasure-seeking selfish idiots who could just, like, stop if we really wanted to. I also know what it’s like to have lived with an addict, and been the recipient of the pain and humiliation that comes from that.  I get that.  But then I see the judgment bubbling out of people every time a celebrity addict dies from their condition: Why are we caring about Whitney Houston/Amy Winehouse/Philip Seymour Hoffman when good people are dying of X/Y/Z?

Because there are limitations on compassion, right?

I write and post about people who die from the same thing I battle every fucking day because it’s what I know, and it’s but one of the things I care about. And when I call people out for denigrating addicts, I invariably get: “But I’m not talking about YOU!”

Except that they are. Because I’m only one drink away from being that scumbag alcoholic. I’m one drink away from being the obnoxious drunk on the train. One drink away from being the selfish asshole with no self-control. They are talking about me, because of this refusal to see people like me as ill. Gravely ill.

I tend to keep it light on Facebook. I’m not the kind of person who goes online and says, “UNFRIEND ME NOW if you think _____.” But I have been sorely tempted to do just that every time an addict of note dies, because the willfully ignorant bile coming out of folks – who are purportedly on board with me as my “friend” – is enough to make me doubt just how valid some of these “friendships” are.

It doesn’t matter that you’re not talking about me specifically when you’re bashing addicts. See above.

It doesn’t matter that you’re “just joking.” It’s not funny.

It doesn’t matter that you’re just trying to point out that there are “more important” things to talk about. “Important” is relative. Would you be giving me as much crap if I were posting about someone with cancer? Don’t tell me that’s “different.” It isn’t.

I have a condition that will absolutely kill me if I don’t remain vigilant about my specific route to recovery. I don’t think it’s out of line for me to ask that folks take a second to muster a soupçon of empathy before unloading their judgmental ish on me and my kind. Because the junkie you saw that you have so much disdain for? That’s me. The guy reeking of beer sweat in the subway station? That’s me, too.

And I can pretty much PROMISE you that not a one of us sets out to become an addict. I don’t ever – EVER – hear anyone in recovery say, “When I was a kid, I COULDN’T WAIT to become physically and emotionally dependent on substances. Like – woo! – SIGN ME UP.”

When I was seven, I wanted to be a writer. At 16, I thought maybe I wanted to be an actor. Sobbing and retching over the toilet every morning, alienating everyone I cared about, covered in bruises because my liver couldn’t keep up with the steady flow of poison I was drowning my organs in? Not at all in the game plan. But that’s what happened to me. Because I am sick. My condition is in regression, and it’s certainly my hope that it won’t rear its head again, but this is what I’ve got. What I’m dealing with. And it’s no joke. And when you say ugly things about people who die from this, or people you pass on the street who can’t get well, you are talking about me.  And it hurts.

So if that’s the way you really feel, then perhaps you aren’t my friend after all.

Do with that what you will.

Grasping at Reason

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I wrote a piece for The Flounce the other day about helping friends and loved ones in crisis. Kind of a “what not to say” thing. I’m only a year out from no longer being an in-house primary caregiver, so the feelings there are still very fresh, perhaps to the point of misinterpretation.

We went to visit my mother-in-law yesterday. She has her “lively” days, and this was not one of them. She wasn’t depressed or despondent (she seldom is, and we’ve found that it’s still fairly easy to redirect her when she does become upset), but she was listless. She was sitting in the “quiet room” when we got there, napping in one of the wingback chairs, but woke up when we said her name.

What was it like? It was like interacting with a sleepy toddler. She sat in the chair, kind of cooing and babbling.

Occasionally she can eke out a partial sentence that seems like it’s going somewhere, but then it fades off into more gibberish. There are no real conversations. We can ask her how she’s doing, and sometimes she’ll remember to say “Fine.” But mostly it’s acknowledging whatever she’s saying, and not trying too hard to decipher it all. She seems contented with almost mimicking the back-and-forth of a conversation: saying something and awaiting a response. Yesterday, though, her cadence was very sing-song, like a small child consoling itself at bedtime.

Eventually, I handed her a throw pillow to fuss with, as this tends to trigger the need to tidy something, which in turn makes her a tiny bit more lucid. She stroked at it and made little furtive scratching motions on the embroidered side. She managed to do a number on several pieces of furniture that way, back when she was still in the house with us. She’d rub and rub at imaginary spots until it left divots on her coffee and dining room tables. We couldn’t salvage the coffee table in the end, but did save the dining room set. In the quiet room, there’s usually a basket of towels for someone to fold, or a box filled with sand and small plastic objects, to satisfy the urge to do repetitive tasks. I think these things must have been moved to one of the activity rooms; yesterday there were just the big leather chairs and a little white noise machine. I digress.

When we go visit, we usually pass several folks who live in the regular assisted living community, sunning themselves in Adirondack chairs or reading. The ladies are always dressed to the nines in bright colors and accessories. And I never see them without lipstick. They are fabulous. They are always happy to greet and be greeted.

I love passing them on the way in and out, but this is also painful. There are no guarantees in this life. Some of us will get to be fabulous old ladies, like my own mother, who doesn’t dare leave the house without her giant Dolce & Gabbana sunglasses that she found at a flea market.

My mother is a fabulous old lady. My mother-in-law has been essentially infantilized by her own brain.

It angers me that she’s been cheated out of being as fabulous as I know she could have been. She’s broken most of the great costume jewelry necklaces I packed for her last summer, or twisted them the around the Lladro figurines I put in her room, creating strange little works of art that make sense to no one but her. She still gets her hair and nails done (there’s a little salon on her floor called “A Cut Above”), and when she’s freshly coiffed, she looks like she could say, “Get me the hell out of this place and let’s go to Rockport.” Instead she smiles beatifically and says, “Flibberty jipsum on the mo mo mah mah mah.”

So I leave after every visit with a heaviness that’s different from when I was with her every day. It’s a combination of remorse and relief. I know that I cannot do for her what the staff can. Every morning and every evening took everything that I had, mentally and emotionally. Getting her dressed. Getting her clean. The nightly ritual of lowering all the blinds and turning off lights so that something in her mind would kick in and she’d know it was time for bed. Fighting her over taking a bath, or even getting her to agree to a once-over with a washing mitt. Keeping her from dismantling another appliance. Keeping her out of danger. That’s no longer on my daily to-do list, and I’m grateful. But my own shortcomings were such that we had to move her out of her home. I still feel guilty about this.

I leave feeling such sorrow for her, and everything that’s she’s lost. What’s fair about any of this? I talk to others who are dealing with sick parents. Sometimes you find yourself comparing your situation to another’s. “It’s worse for my dad, because he knows he’s dying.” “It’s worse for my mom, because she’s losing her mind.” The thing is – it’s ALL watching someone deteriorate. It’s ALL confronting mortality and frailty. There’s no comparison. There’s only grief.

I feel so hopeless sometimes. As much as I appreciate my life as it is right now – living in a house I’m happy to come home to, with neighbors who are engaging and funny and kind – it came at a cost. My faith in any sort of a just and concerned Universe/Higher Power/Flying Spaghetti Monster has been shaken to its core. I don’t know what or who I’m praying to, and I’m simply not at the point where I can accept entropy, or nothingness. I can’t make sense of any of this.

So I write. I talk to other people going through similar situations. There’s comfort in the similarities (“Your mother hoards paper towels? MINE DOES TOO!”). I wonder if some become sick because others need perspective, or more contact. I flail about for the right words to describe it all, hoping that in re-reading, it will make sense. I’m re-reading this now; it’s all over the goddamn place. It doesn’t matter. This is life in the shadow of illness sometimes: grasping at reason.

Sticking Up.

2

A post I wrote a couple of years back has been making the rounds again, and has brought with it a bunch more followers.

I always get a little nervous when this happens, like I’m being thought of as this Sobriety Guru, like a wizened Yoda-type sitting on a lily pad doling out sagacious tidbits about not drinking, when really I’m just another clown on the bus trying to stay on board. I mean, you’re dealing with someone who sticks her eighth grade picture into pre-existing photos and works of art. I am really NOT the person to look towards for sanity and wisdom, y’all.

So I feel a responsibility to let folks know that while I do a fair amount of talking about recovery, it’s not the ONLY thing I talk about, and a lot of times you’re going to also get stuff about Alzheimer’s, zombies, and garden variety potty humor. If that’s not your bag, and you want to bail, I will totally understand. But getting sober frequently means rediscovering other areas of interest, and one of the great things about sobriety is that while it’s still gotta be first and foremost, it doesn’t have to be ALL you talk about.

Something I will address today is sticking up for yourself and your sobriety. That can mean anything from shooting down overly-personal questions about why you quit to voicing your discomfort.

Case in point: I share a practice space with my bandmates. As someone who’s contributing to the rent, I think it’s fair of me to ask that people not leave their empties lying around after practice. It’s not like I’m going to run around drinking the dregs in said empties (although I definitely wouldn’t have been above that 13 years ago), but – you know – I also don’t particularly want to look at them, either. So the other night, I politely asked folks to pitch them in the trash can in the hallway. I’m not a Puritan by any stretch of the imagination, and I get that sometimes people want to have a beer at practice. I was able to express my discomfort about the empties in a respectful way, and everyone was on board with being a little tidier.

That’s maybe an overly-simplistic example, but I think a lot of alcoholics/addicts also have fallen into the habit of being really, really passive aggressive. Before I started really getting into the work of being sober, I just assumed that everyone would immediately sense my discomfort and summarily capitulate without my having to say a damn thing. And if they didn’t, then I’d find some insanely roundabout way of getting what I wanted. That’s exhausting for everyone.

But what I’m basically trying to say is this: you’re dealing with something that could kill you; it’s okay to protect yourself. You have the right to turn down invitations to parties if you feel you’re going to be uncomfortable in any way. You have the right to ask if a get-together can take place somewhere other than a bar (I’m usually okay in a bar if it’s also a restaurant, and I can occupy myself with nachos or fries). I’ve learned over the years to understand that this is NOT an outrageous proposition. If I know I’m going out to dinner with vegetarian/vegan friends, I will order vegetarian/vegan. It’s just common courtesy. I will say that it’s interesting that this is a courtesy that is very seldom extended to me as a non-drinker, even though I’m generally comfortable with someone ordering alcohol with dinner. I’d say less than 5% of the time I’m asked whether or not I’m okay with someone drinking in front of me, and maybe that’s because I’ve been pretty sanguine about it over the years. I don’t know. It’s nice to be asked, though.

I am, however, wicked uncomfortable around people who are obviously inebriated. That’s just plain no fucking fun at all, and it’s why I’ve sometimes either stayed home from a party, or bowed out early. As I get older, this becomes less of an issue, since most of my friends by and large aren’t into getting stupid drunk anymore. Me, there is always going to be that urge, however long it’s remained dormant. I am hard-wired for oblivion, and there are still days where I have to tread carefully, and it is 100% okay for me to ask my friends and loved ones to help me out when I’m on shaky ground. And it’s okay for you, too.

“Masshole.”

0

Here in Massachusetts, some of us are celebrating the fact that the Oxford English Dictionary (OED) has seen fit to make “Masshole” an official word:

Masshole Syllabification: Mass·hole

Pronunciation: /ˈmasˌhōl/

noun

US vulgar slang

A contemptuous term for a native or inhabitant of the state of Massachusetts.

Now, I have a problem with this notion that this is a “contemptuous term.”  Perhaps outside of the Commonwealth, it’s used contemptuously.  Around here?  It’s a badge’a fahkin’ HONAH, kehd.

Further, I feel like it’s much better explained with visuals.  I’ve started a few:

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index
They really should’ve asked me first, that OED.

The Play’s The Thing.

1

Geralyn is convinced I’m going to kill her.

I have to say, I almost enjoy the idea that every Sunday I go from being a vaguely-old-gothy database administrator to a scheming murderess. I always smile at Geralyn, who holds court in the back row of rocking chairs in the day room, along with Nancy, Joyce, and a few of the other more lucid ladies, before I take a seat next to my mother-in-law. Geralyn always smiles back, but invariably – several minutes into my visit – I hear her tell the others that I’m going to kill her.

“That’s the one. She stopped me in the hallway and said she’s going to MURDER ME.”
“Which one?”
“HER. The WEIRD one.”
“Oh, I don’t think that’s true. She’s here very often. I think she might be married to that nice fellow there.”
“She’s going to KILL ME. I can’t sit here with her in the room like this.”
“She’s very strange, though. I won’t argue with you there.”

This goes on at full volume, like I’m not sitting mere feet away with my mother-in-law, who’s smiling beatifically and occasionally stroking my hand.

Edith is in her wheelchair, right in front of the television. I like Edith. She’s got a series of wigs that usually wind up askew on her head by mid-afternoon. Edith repeats phrases, words, and short declaratives by way of communication: “BillClintonBillClintonBillClinton.” “You’refullashityou’refullashityou’refullashit.” I think she likes me, too. She’ll sometimes creep up next to me and stare, before making kissing noises. My mother-in-law is gently protective of Edith, patting her on the knee and saying something like, “Oh, you’re the typewriter flibberty jipsum.”

Meanwhile, in the back row, the conversation seems to have turned from my homicidal tendencies to the temperature in the day room.

“It’s cold in here, don’t you think?”
“It IS cold, yes.”
“It’s ridiculous. I’m going to the front desk and complain.”

(A pause, then:)

“Aren’t you COLD?”
“I was always a very cautious driver.”
“She asked if you’re COLD.”

Friends and acquaintances frequently ask me if I’ve seen Still Alice. They’ve seen it, and/or read it, and it was “just devastating.” Have I seen it? I want to say, “I’m in the middle of kind of living Still Alice right now, thanks.” But what I usually say is, “I don’t think I’m ready to watch that.” Both are true; it’s just that the latter response is considerably less snarky, and I’m trying really hard not to be snarky, at least where this is concerned.

There was an article in the Boston Globe recently about the “trend” in theatre right now: the preponderance of plays about dementia. How many of them so accurately depict not only the fear and despair experienced by those who are losing their minds, but the despair and exhaustion of their loved ones. As someone who’s been immersed in theatre since adolescence, I understand the importance of telling these stories onstage. As someone who studied playwriting in graduate school, carefully crafting dialogue in workshops alongside friends who would go on to create amazing work, I feel as though this is something I myself could tackle, eventually, when it’s not so goddamn raw.

The problem is that it would wind up being completely inappropriate, if not downright Ionesco-esque.

“Where is my room? Where are my clothes? “
“She flat out told me that she’s going to kill me in my SLEEP.”
“Can’t you report her to someone?”
“SHE DOESN’T LIVE HERE.”

An aide comes over, to fetch my mother-in-law. It’s time to go into the dining room for a snack.

“Marcia! Marsheeta! Happy Birthday to you…”
“Happy Birthday to you, happy birrrr…no, I’m not going to that place.”

Annnnnnd…scene.