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.

Sticking Up.

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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.

Now We Are Thirteen.

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Today marks 13 years since I had my last drink.

This morning I tried to think about what I was going to write, and I mostly kept thinking back to what I wrote last year. It was just about a week before my mother-in-law went into memory care, and I was just barely functioning. I was on auto-pilot, just trying to get through every day, trying to knock off the tasks in front of me and hoping things wouldn’t get too FUBAR, because I honestly didn’t think I had it in me to deal with anything other than just surviving.

In a lot of ways, that was like early sobriety. Only I wasn’t entirely stripped of coping mechanisms.

This year was better. Markedly so. It wasn’t without its stressors – emptying out her apartment so we could move in, and subsequently have our friends move into the downstairs apartment, was probably one of the most emotionally taxing things I’ve done. Sorting through the personal effects of another person, trying to assign value to these objects, and all the while doing so knowing that the person is still alive, yet unable to tell you to whom things should go…that is some brutally frustrating shit, you guys. I found myself fighting resentment left and right, because as a recovering alcoholic, I really don’t get to be resentful. At least not for very long.

The further I get away from that last drink (warm Chardonnay in a plastic cup, in case anyone was wondering), the more I feel like I have to really make a concerted effort to remind myself what a bloodhound for oblivion I was. How many hostages I took because I wanted an audience.

Three years ago, I wrote this:

I don’t want congratulations — I want understanding.

I want the people out there who are drinking themselves to death to understand that there is nothing romantic about being a drunk. It is not a cultural or artistic imperative to be a drunk. Drinking does not make you a better writer, a better artist, a better musician, or a better lover. It does not make you more in touch with the Universe, your muse, your emotions, or the person you’re trying to have sex with.

I want the people still out there, still trying to make it “work,” to understand that nothing is so terrible, no emotional terrain so unnavigable, that drinking will not make worse. I want them to understand that it’s not a balm; it’s poison. At the very LEAST, it is preventing them from processing their grief, pain, or frustration in a healthy way. It’s simple physics: you meet with a lot more resistance when you try to move through fluid.

I want people who don’t suffer from addiction, and the indignities it heaps upon those of us who DO, to understand that they need to stop making jokes at our expense. I want them to understand that we are not less deserving of grief or compassion when we die from our illness.

I stand by those words. We’re still living in a culture that celebrates drunkenness in the form of cutesy “wine humor,” yet looks upon the struggling addict as weak-willed and worthy only of derision. There is still so much willful ignorance when it comes to this.

And there are still so many people who won’t get what I have. I lost another friend this year to this disease. Brian was beyond kind and patient with me in my early sobriety, when I was just a blubbering mass of exposed nerves. We went out for bagels, we got ice cream, we went to the movies. He understood my need to fill those first days and weeks with all manner of stupid, banal shit. He was also the only person – EVER – to get away with calling me “Lee.” But he struggled, too. It happens with us. It honestly doesn’t take much to shove us off the straight and narrow and right into a ditch. As horrible as it sounds, I need to see what happens when we start up again. In a terrible way, that was Brian’s last gift to me. I am not immune, nor impervious.

It was another twelve months of loss and transition, but it was also a year in which I remembered how to take really deep breaths. It was a year in which my shoulders began the slow descent from just around my ears to where they more or less are supposed to be. I can actually start focusing more on my job, and my writing. I can write about something else other than being a caregiver. I can write about vampires. I can create ridiculous Photoshopped pictures of my 8th grade self.

I’m beginning to not feel guilty about how much I enjoy weekends. I’m trying to give myself a break from thinking about all the things I could have done better, the things I could have done to – I don’t know – slow down the process of my mother-in-law’s disease. I’m trying not to put the ugly things I’m thinking about myself into the thoughts and motivations of other people. And I’m starting to take off some of the 30+ pounds I gained while being a primary caregiver.

I am really trying to better myself through simply listening. I’m also trying to avoid comments sections.

And I’m not drinking. Miraculous. Unfathomable. Fucking amazing.

Desperation Anniversary

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One thing I didn’t really think to acknowledge as New Year’s Day came and went is that it’s an anniversary.  Of sorts.

It’s not my sobriety date.  There’s still a part of me that wishes I could have stuck with that, because January 1st seems like such a GREAT date to claim as your sobriety date, when of course the reality is that ANY date works just as well, is just as personal and suffused with meaning and liberation.  But we generally put a lot of emphasis on the first day of the new year.  Advertising has a lot to do with that.  The fitness and diet industries thrive on touting January 1 as potentially transformative, but that’s another post for another time.

So, no, I didn’t stop and stay stopped, effective January 1, 2002.  It would take another 6+ months of struggling and relapsing to arrive at June 19th.  But January 1st is when I faced the truth about my drinking.

I had been, like I had for several years, at my best friend’s house for her annual New Year’s Eve party.  And as usual I had too much to drink and passed out in the car on the way home.  But there had been no screaming arguments with my husband, no embarrassing antics.  And I hadn’t thrown up.  At this point, that constituted a “successful” night of drinking for me.  People, including myself, had been expressing concern about my drinking for months up until then.  If I’d still had any fight left in me, I would’ve been pleased to hold up December 31, 2001, as “proof” that I was okay.

But I woke up later in the morning on January 1 feeling more than just hungover.  I was well and truly pitted, and I knew in my heart that I was an alcoholic.  I made a call, and was directed to a church basement.

It didn’t stick, January 1st.  I wasn’t ready.  If I’d felt horrible that day it was nothing compared to the way I felt some 6 1/2 months later.  But I felt horrible enough.  I felt desperate enough.  And that’s why January 1 is my “desperation anniversary.”  I don’t get a card and a medallion on that day.  I don’t get taken out for brunch with some the friends I’ve made over the last 12+ years.  But damn it, it’s an anniversary, and I’m grateful.

Chain Drinking

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The other day, while slogging through the rain on Huntington Avenue bearing take-out sushi, Dan and I passed the UNO that has been on the corner of Huntington and Gainsborough for – I don’t know – AGES. Certainly as long as I’ve worked at the theatre, and that’ll be 22 years in January.

Dan: Ugh. I wish that place would GO AWAY.
Me: It’ll never go away. It’s a mainstay for the matinee crowd.
Dan: I guess.
Me: I used to drink there. When I still drank. I would go there and drink after work.
Dan: Oh my God. That’s sad. That is SO SAD. The only thing sadder? Drinking down the street at The Cheesecake Factory. On Christmas Eve.
Me: Bah ha HA! No, wait! Drinking at…at…okay, drinking the night before Thanksgiving in your hometown. AT APPLEBEE’S.
Dan: Yes. That is the saddest of all.

(Actually, the saddest place I drank was not a chain restaurant bar. While there is most definitely something quite sad about drinking in those kinds of places, there are sadder places. Like, oh, supply closets. Public restrooms. Your own couch, in front of your stereo, listening to the same Jayhawks album over and over again. Not that I would know anything about any of that.)

I think I drank in chain restaurant bars because there was something comfortably anonymous and cookie-cutter about them. Whether you’re in an UNO in Boston or a TGI Friday’s in Orlando, you’re staring blearily at the same faux stained glass panels, listening to the same Bryan Adams songs, and squinting to read the same nametag buried amongst all of the same “flair” advertising the same unlimited salad and breadsticks or the same new deep-fried something-or-other. Pudding in a shotglass. Radio Flyer wagons nailed to the walls. Yes, another. Please.

When I drank in these places, I typically stuck to beer. I could count on most of them having Sam Adams on tap, which was the least offensive draught beer in general. Because I wouldn’t go near Budweiser, I felt that I was discerning enough to not have a drinking problem.

Unless I could coerce a coworker into drinking with me, I drank alone, and socialized with no one. You don’t go to the bar at UNO to make friends, or I certainly didn’t. I would typically make a show of having something to read or do. I’d grab a file from my desk and sort its contents, then sort them again. Taking my work with me to the bar meant that I took my job VERY seriously. Or that’s what I thought the bartender thought. In reality, the bartender knows what your deal is, or doesn’t care what your deal is. This was all part of the elaborate system of appearances I spent most of my time obsessing over. How to drink without looking like I needed to drink.

Since getting sober, I can count on one hand the number of times I’ve been inside that UNO. I’ve gone there after taking family members to a matinee. Doesn’t bother me in the sense that I am not seized with an overwhelming desire to sit at the bar and drink Sam Adams while sorting paper. It’s not my first choice when it comes to dining out, but only because I feel like you may as well order a salt lick and a tub of Crisco than choose something off the menu. The effect is the same.

Pushups

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The death of Robin Williams has almost everyone I know shaken. People are talking about how “shocking” it is.

The sad thing is – it’s not shocking. It’s tragic, yes. But to me, and to countless others who struggle daily with the one-two punch of addiction and mental illness, it’s not shocking when someone succumbs to it.

Williams had always been open about his issues. He maintained sobriety for 20 years, then relapsed. It’s an altogether too common story, but the public at large only hears about it when a celebrity stumbles, falls, and can’t for the life of him pick himself back up.

And this is what so many people fail to understand. Mental illness and addiction are still looked upon as matters of “willpower.” And when we are active in our addiction, our brain chemistry is so profoundly fucked up that reason and willpower have nothing to do with correcting it.

“Cheer up.”
“Get over it and move on.”
“Things could be so much worse. Try to have a little perspective.”

This is the advice we invariably get from people who don’t understand the depths that we can find ourselves in.

When a celebrity dies from the complications arising from these illnesses, there is a period of online hand-wringing. How we wish he could’ve gotten help. Depression is bad. Addiction kills. We post updates begging people who are depressed to get help. And then we go back to taking the “How Crazy Are You” quiz on Facebook. 53%! LOL.

Because it’s still misunderstood. It’s an issue one minute, and a joke the next.

My friend Kay put it this way last night: “Addiction and depression walk hand in hand into the mouth of hell.” As an addict in recovery with a mood disorder that requires regular and carefully administered medication, I am well aware of how close I can get to the mouth of hell, how many times I’ve dipped a toe into it and felt the blast. I am not waxing overdramatic here. This has brought me to my knees and has destroyed friendships, relationships, and trust. I know what to do to take care of myself now. But I also know how easy it is to go on autopilot and believe that I no longer need to do those things.

You hear this a lot in recovery: “Your disease is doing pushups.” It’s always there and always ready to take control. And when it does, it is exponentially stronger and subsequently exponentially more difficult to get out of its grasp. This, I believe, is what happened to Robin Williams. Philip Seymour Hoffman. Vic Chesnutt. My friend Caroline. I have watched people I know and love circle the drain and all I can do is stand there, holding out my hand. Some grab hold. Some don’t. This is the reality of it.

There’s help. There’s hope. And it begins with understanding.

Flouncing.

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I’m writing for a website called The Flounce. I’ve been hired to write about caregiving, which means that I’ll be shifting all of that over there for the foreseeable future. In a way this is a relief, because the tone around here has been awful serious, more so than I intended, and while my site has always reflected whatever it is I’ve been going through (recovery, cancer scare, divorce scare, caregiving), I’d really like this to be kind of…Alzheimer’s-free. For a little while. This disease has so saturated almost everything I do, personally and creatively, that I’d like one little sanctuary where I can write about stupid shit.

That being said, before I direct anyone interested in my Caregiving Journey over to The Flounce, I do want to share that I’ve reached out for additional help, in the form of what’s called a Geriatric Care Manager (GCM). In the last 8 months or so, we’ve been really feeling cast adrift as virtually all our “free time” (meaning – the hours in which we’re not at work) is being spent shadowing my mother-in-law, because she really and truly cannot be left alone for longer than an hour nowadays. We’re all swamped – me, Kevin, Kevin’s brother and his wife – and phone calls and appointments are not happening as they should be. The GCM will help us be better organized, and help carve out a clear path for us as we look for the right place to put her.

I have to say this again and again, because people who are not living this situation simply don’t get it: you cannot “just put (someone) in a nursing home,” or assisted living facility. You don’t pack her a suitcase and drop her off. Many places, we are learning, won’t even take her because she “doesn’t require” nursing care, according to their standards.  Places that can take her are so expensive that we would blow through her savings in under a year.

We have to accept that we are probably looking at another year of having her here with us, ramping up the assistance in terms of companions and personal care aides, and continuing to turn down most invitations to stuff. I worry that our friends and family are eventually going to stop inviting us places, because we’ve become, in essence, The People Who Can’t Go Anywhere. Like, one day we’ll finally be able to go to someone’s birthday party, and we’ll still be in our living room, watching Star Trek and listening for suspicious noises upstairs, because everyone has become accustomed to precisely that.

It sounds so petty and awful to complain about that. Like, boo-hoo, we can’t go to some 80s band reunion show because my mother-in-law is slowly dying of this horrible fucking disease. She still has these brief moments of clarity, where she understands that her brain is being overtaken. I can’t fathom the nightmarishness of that. Like being held underwater and breaking the surface here and there to breathe, only to go under again. That is way more of a struggle than seeing that Peter Murphy is coming to town and trying to figure out if you can schedule/finance the “down time” to go.

It is a daily lesson in acceptance and perspective and yet I still have trouble absorbing it. Because I’m an alcoholic and an addict and I am hardwired for solipsism. I simply am not naturally selfless. Lately I’ve been re-reading Lives Of The Saints as though I’m searching for takeaways in asceticism.

Because in spite of all this, I can’t call myself an atheist. I have been falling back on what little faith I have to keep me going. And there are some (plenty, really) who’d call me weak-willed and stupid for doing so. And that’s okay. We all have our coping mechanisms. I can’t drink, but I can pray and believe I’m getting an answer. And I can ask that people who don’t agree with me not be, well, dicks about my using the tools I have at my disposal.

Cripes. I said I wasn’t going to do this. Make another post on this site about Alzheimer’s and how I can feel all of the grief and anxiety altering my DNA. It’s all going over to The Flounce, effective today, while over here it’s going to be about zombies. And cupcakes. And Keytar Bear. Hopefully. Because there’s always room for Keytar Bear.

Waking Up On Couches

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For the last few days, I’ve been sick. Wiped-out, snot-blowing, Dickensian-orphan-hacking SICK.

This has made caregiving more than a little challenging, but with faith, perseverance, and DayQuil, I managed to get through the weekend.

I made it through this whole dank, dark winter without so much as a sniffle, so I should have known this was coming. Because when I get sick, it’s always an event that can stretch on for weeks. It’s just the way it happens with me. I didn’t just get swollen glands as a kid; I got some kind of freakish blockage that required several trips to Mass Eye & Ear and about a month home from school in the 4th grade. I’ve also had two staph infections, and a bout with walking pneumonia in my twenties that pretty well ravaged my immune system. So I try, very hard, not to get sick.

Because I don’t just “get a cold.” It settles deep into my lungs and renders me sleepless for nights on end. Most over-the-counter cough medicines are out of the question for me, given my history. So I just try and stay hydrated, and load up on the rancid, root-y nastiness that are Fisherman’s Friend lozenges.

And yes, friends – I have tried VapoRub on my feet, apple cider vinegar, tea with honey, and just about every other olde-tyme-y remedy out there on the internet. I suspect what I need are just plain NARCOTICS, but this would require asking Coombsie to dispense it for me (I mean, I’ve been sober 11+ years but I still don’t entirely trust myself around the “good stuff,” cough-suppressant-wise) and he’s already managing Mom’s medications.

The last couple of nights I’ve been hacking so loud and so often that I’ve retreated to the couch in the living room, so that at least Coombsie is getting some sleep.

At around 3:30 this morning, on the couch, I had an epiphany. I was thinking about actually going back to bed, because I really, REALLY didn’t want to greet the dawn on the couch. That just struck me as horribly depressing, and I realized how long it has been since I’ve needed to pass out on someone’s couch.

I’d say I had to do this very thing, oh, dozens of times throughout my twenties. I’d get too drunk to manage to get myself home, and so I’d wind up on all KINDS of couches throughout the Greater Boston/Cambridge area. Coworkers, friends, ex-boyfriends…somehow they took pity on me and let me crash on their couches. Some would make them up into some semblance of a bed. Some would just leave me to my own devices. And I’d wake up on these couches, bleary, pained, and vaguely ashamed. Often I’d just tiptoe out as soon as I’d figured out where I was and how to reach the nearest T station (TIP: look for a pile of phone or cable bills for an address, kids!), and figure out the thank you and/or apology strategies after the fact. I don’t look back on my twenties particularly fondly. I did a lot of cool stuff, managed to get two degrees, and I think I thought I was having a good time. But in the 800-watt glare of sobriety, reality, and my forties, I see a young woman running herself ragged, trying too hard, and making herself sick.

And I KNOW that I don’t live that life anymore, and I KNOW that it’s my own couch I’m sleeping on (or attempting to sleep on, anyway), and come most dawns, I don’t have anything to apologize for. I just don’t like to wake up on my couch. I don’t like to start the day from my couch. It’s not natural.