mayday productions

quick update

noreply@blogger.com (sarah may scott) — Fri, 13 May 2011 23:39:00 +0000

I think I've finally figured out what my next project is going to be, but that's all I'm going to say for now.

I'm not sure if there's much more mileage I can get out of this blog, but that could change in the future. So it will be an archive until further notice otherwise (or if I change my mind, which I'm prone to do). I worked out so much of my bullshit here that it's time for me to look outward and forward (and besides, being sober and sane isn't all that exciting to write about, the journey so much more) And I truly thank you for reading all of it. God, some of that shit was just so brutal I have dwelled on it enough for the time being.

but I want to move on and it's time. A project that has been in the back of my mind for several years now, actually since I bought my camera, seems doable now. I feel confident about it and more importantly, I feel a value in doing it - and not just for me. I have an objective of sorts. A story to tell again, one that is my own but yet isn't. I suppose I really want know until I get further into it really.

Logistics are unclear, and I'm apt to just let it happen and see where it goes.

ttfn.
s

lunch with granpa

noreply@blogger.com (sarah may scott) — Mon, 27 Sep 2010 17:30:00 +0000

I finally got around to working on a project long overdue, "Lunch With Granpa". I published a two parts of it this weekend, and it's already made it's way around the world to France and Switzerland where I apparently have relatives. It's been a big hit in the family, to the point I was actually translated a email from french to english this morning.

When I was sitting there, my wee point & shoot running on top of my wine glass, semi-tanked, I just kept remembering what the late PJ O'Connell had remarked in his amazing documentary series "Darlene" - which, in essence, is to shut the fuck up. (PJ was the father of an ex-boyfriend, and we were very close for many years, even after J and I had long since broke up.) Which is insanely difficult for me who just wants to keep poking around and babbling questions. But with him in mind, I managed to let things unravel on their own for the most part.

from my vimeo page:
I go to lunch with my 88 yo Granpa once a month and he insists we order a bottle of wine and get tanked. Today we drank a bottle of "merlotte" as he calls it at a Japanese restaurant that had a picture of a naked siren swimming towards a bicycle. It was called Cycles Gladiator, very apt. Once we finished eating and are finishing up the wine, I film him telling various stories. This is how he came to meet and marry my deceased Grandma (maternal side). As he says, "...the love of my life."

going to the matresses for healthcare reform

noreply@blogger.com (sarah may scott) — Thu, 23 Sep 2010 17:03:00 +0000

fucking finally.

Now begins a long post about the Affordable Care Act. Try to stay with it, or just watch the video at the end. This is my story:

I noted somewhere, on twitter maybe, that I not so recently fell into the Medicare doughnut hole. Yes, that is actually what is called. Here's how it happens:

To begin with, I'll start from how I came to be on Medicare. Once I was declared disabled and eligible for SSDI (social security disability insurance - income basically) I had to wait the mandatory six-month waiting period before I could actually receive any money. This was rather unfortunate, since my job did not provide short-term disability benefits (a three month window) and the long term wouldn't kick in until that window was completed.

I immediately went on COBRA, which cost around $300 or so dollars a month, which enabled me to continue to be insured at the time I most needed it. But I had no income. I cannot express fully my gratitude for all the people who put together a number of fundraisers that helped immeasurably for me to be able to pay my bills and purchase various big ticket items related to my disability. Living as a refugee, which I was, isn't cheap. I don't know what I would have done otherwise. I would have been fucked, beyond how fucked I already was from the injury.

Finally I went on SSDI and qualified for long term disability insurance (which, btw, reduced their payment the moment you go on SSDI because they can, Wal-Mart style that is). That is my fixed income and how I get by financially. The long term disability insurance covers me until I'm 65, something that I live in fear of. I honestly hope I'm not around when it comes to that 'cause it's going to be ugly.

Before I could qualify for Medicare coverage, I had to wait the mandatory two years from the time I first received SSDI. I was able to stay on COBRA during that time, though at one point it looked like there was going to be a huge gap until my attorney swooped in and reminded them of how the law works and my coverage was extended.

Medicare is not free either, that's Medicaid which I don't qualify for because my income is too high (believe me, I am not rich by any means. I'm simply not impoverished, though lately that's debatable). So I bought the regular medicare coverage, the RX plan, and a Gap Plan. I pay somewhere around $200 for this. The Gap plan covers what medicare doesn't, but does not apply to the RX coverage. If I didn't have it, I'd be utterly bankrupt by now. And by the way, if you're not a senior, you have very limited options when it comes to choosing your medicare insurance provider. No one wants you because you're young and disabled and undoubtedly going to be expensive for a very long time.

Sooo, the donut hole. I was massively depressed this year, the full force of grief over life lost finally hitting me. Right when I got to where I was used to it all, able to navigate the system, navigate my own life, discovered my love for photography and writing, had my dog reasonably trained, able to go out in public without a hat and sunglasses (and during daylight hours), I was suddenly able to relax in my new paradigm and that is when all the PTSD, grief, regret, whatever you want to call it, took over.

I went on various medications, some of which were outrageously expensive. These in addition to my pain meds and the rest of my daily pill regime (which isn't huge, but nonetheless an expense). With the medicare RX program, I first paid a deductible, and then 25% of each rx until the total spent hit $2830. That's when the donut hole takes over, and until you spend another 2k or so, you're now paying 100% for all medications, a total fucking nightmare. After you get through that, then the final stage (up to a certain amount) you pay 5% of cost. And yes, there is a cap on that final stage.

So naturally what happens is people have to start making tough and generally bad choices. Either the medication or your food, your rent, your whatever you can or cannot spare. I'm managing ok - one of my doctors is providing me with samples for my anti-depressants, I quit a couple medications entirely, and have taken up a very keen interest in homeopathic treatments, some of which work quite well. But it's taken a huge financial toll.

Under the Affordable Care Act, I got a $250 rebate check from Obama to help cover me during this time. That's the first part of the plan, and each year they will roll out more incentives until 2020 when the gap closes for good. Next year they will offer 50% off certain medications in addition to the rebate check.

If you're still reading and your brain is near comprehending all of this, you've probably got a migraine coming your way. It's all deeply boring until you find yourself having to become an expert out of necessity. But I feel it's important in understanding just one tiny aspect of why health care reform is such a dire need. Congratulations for making it to the end of this post.

A slightly less dense version of this from Obama himself aired on The Rachel Maddow show:

Visit msnbc.com for breaking news, world news, and news about the economy

blackout

noreply@blogger.com (sarah may scott) — Mon, 13 Sep 2010 04:47:00 +0000

When the lights go out I grab K and tell her to get her stuff and we’re leaving and I refuse to take no for an answer. She’s from San Francisco and wasn’t here for 9/11 but she knows I’m serious so we head down the stairs while the others line up idle for a fire drill. Outside the building, amidst the grime of the warehouse district and the roar of the westside highway, the rest of the building starts to follow when it becomes clear the power isn’t coming back on and the emergency generators only give us 20 minutes before it all goes black, which the rest of the city already is.

In my haste, I’m still wearing my heels which will not do for a Manhattan emergency, so I climb back up against the fashionistas clacking their way down the stairs and go for my flats that I have stashed in my locker for this very purpose. The lights are seriously fading by now, but I’ve got my emergency maglite on my keyring so I know I’ll be ok.

Back outside you can tell who was here for it and who wasn’t. No one’s quite sure what’s going on but I tell her we’re not sticking around to find out so we leave. Best to get off the streets it seems. I spent 9/11 in a crowded bar that is notable for Kevin Bacon having once bartended at and is two doors down from my apartment on 72nd street, eating burgers on toast because they ran out of kaisers, with my stranded hoboken friends while everyone watches the news in stunned, silent horror. A bar seems like a sensible place to be at a time like this.

We head to the bar owned by a famous author, something with the name king in it, where the special of the day is a rasher sandwich which turns out to be an overloaded BLT. I reach my boyfriend but not our friend J and he joins us on the patio where there’s still light and eat free rapidly melting away ice cream and drink cocktails until the ice runs out. We share the table with a couple of guys with loads of cash which is helpful since we can’t go to the ATM at this point. Still no word from J, and eventually everyone’s cell goes dead.

As the sun goes down, they start lighting candles in the bar as the beer we’ve all been guzzling like it’s the end of the world goes warm, and at some point they decide to close the place down. We’ve lost one of our new friends, so it’s now just the four of us, two guys and two girls, and we head up 23rd street to find whatever bar we can that’s still serving. 23rd street is something of a block party with people hanging out on the street drinking and doors open everywhere to cool off. Our new friend, whatever his name was, makes sure we never stop drinking and none of us object. We’re in the middle of a massive blackout and we’re having the time of our lives.

At some point into the night, I couldn’t say when, maybe the bar runs out of candles and closes, so we decide the thing to do is to go uptown to my neighborhood to my usual place of debauchery. We manage to hail a cab standing in the middle of the street and he keeps the meter off but we give him money anyway. K and New Guy make out like like crazy for the whole ride and by the time we’ve gotten uptown it’s getting downright raunchy and entirely hilarious to sit next to. There are four of us crammed into the back seat so it actually seems like a polite thing to do for one of us to sacrifice their seat for a protracted lap dance of sorts.

Our new alcoholic friend goes on a stealth walkabout sometime later in the night and so the three of us head back to my place. Somewhere along the way K remembers her friend L has flown in from Ireland to stay with her in the East Village, but there is no way we’re letting her leave and besides we have no idea where he could be anyway. We make it past my voodoo neighbor who keeps close tabs on me and feeds me split pea soup on occasion while he lectures me about my ways and then we all pass out.

K leaves early the next morning in search of Irish L, and later on the power comes back on, probably because I live in a nice part of town, just down the street from the Dakota, where I presume the usual torches are for once out. The East Village remains powerless so K, who has found Irish L, comes uptown and we take our massive hangovers out for Mexican food and margaritas. J finally joins us, having spent the night in his stuffy apartment in Spanish Harlem and is beyond pissed to have missed out on all the mayhem.

holly

noreply@blogger.com (sarah may scott) — Tue, 31 Aug 2010 22:41:00 +0000

I knew it was coming. As much as I wanted to do otherwise, I respected her wishes and boundaries for privacy. So I sent her a note, hoping she'd be feeling better soon. That I missed her. And that I loved her.

That was last week. When I saw the number come up today I was so happy, thinking she was back on the mend, just glad to hear from her. It wasn't her. She died.

Talking to her lately hadn't been easy. She was in and out of the hospital, in pain, and not herself. I felt confused and upset about it. I felt rejected. But I also remembered how hard it was when I was in the hospital at my utter lowest, and how some people you can say no to and some people you can't. How some people you have to be polite to and others you don't. How exhausting it is to be poked and prodded constantly by hospital staff. The constant noise.

It can be overwhelming to be at the center of that much love and support, esp. when you feel and look like hell. She could reject my friendship as much as she wanted but I'd still be around, waiting, like it was the last time she was this sick. Waiting to hear her voice without the pain and exhaustion. I knew she had more than enough people locally. So I sent a note and waited.

I didn't get to know her long enough, only a few years. What she did for my recovery I could never fully thank her for, not that she wanted the credit anyway. I told her anyway.

My friend who suffered more than anyone I've known through no fault of her own is gone.

Not long after we met I was invited to give a speech at her work's christmas party. I made it about her.

.

To The East America

noreply@blogger.com (sarah may scott) — Tue, 23 Mar 2010 01:09:00 +0000

View Large On Black

Tomorrow is surgery number six. Perhaps the easiest surgery and the most difficult recovery out of them all. So I assume.

I guess I've blocked it out for so long, as I do, that today came the waterworks and general unraveling. When I allow myself to feel the pain, the emotional pain, of what it takes to keep this body going. To feel the grief of what life used to be like.

I had the opening reception on friday for the gallery show in which I have two photographs in, something I felt really good about. It was feeling for the first time like maybe, just maybe, I've become something of an artist. Am I? What does it mean? My friend and I (you know who you are) debate the idea of craftsman vs. artist, and I tend to prefer the former as any title I'm attached to. Picasso I am not, I'm just someone who wants to make things better and better, and some day master my medium and continue to show myself, my heart, my soul, through all that I do. Whatever that means, whatever title that denotes, it shouldn't really matter I suppose.

So I've been on this high for a bit, feeling my way into this new world of enchantment and trying to find a place in it. Forgetting what lies ahead, forgetting what each and everyday brings. Floating along ignoring all the bad stuff so I can continue working on the things I love. Do whatever it takes to keep going each day whether it means ignoring the pain, working from bed, just whatever I can do to keep baring my soul. It may not always come across, being in the bush league, but I try with each piece I have to tell a small story, a tidbit of who I am, who I want to be, or who I was.

This creatie outpouring started after I got the baclofen pump and my sanity and comfort were finally restored. What a different situation that was too, the surgery and hospital stay: staying up all night, driving myself down 3 hours to Pittsburgh at 4 am and generally freaking out the entire time, angry and sad in equal parts with a touch of rage. This surgery is so completely different, particularly because I've let so many people in this time, which includes my family this time. What a wretch I was, a total pariah misunderstood by so many. I've stopped blaming the world and I just hope for forgiveness which I believe I've gotten for the most part.

I remember the driving and crying to Pittsburgh far to well, and today it was a lot of the same with some home howling at the unfairness and fear of it all. I had to drop Coco off at the kennel which wasn't the easiest thing to do for me (she was thrilled to see her old buddies, bait and switch no doubt). For so long she has been my loneliness cure, the one I could depend on, and suddenly I find myself surrounded by all these wonderful people who send me lovely messages and those local plan to do anything at all they can. All these people pulling for me feels good, the girl who was so shy and shamed she couldn't accept any help for so long, let alone love and kindness. So thank you all for that.

I may be MIA for a long time, it's hard to know when I'll be back to my writing and such. The doc said I could start using my hand in a week, but who really knows. I had a doc tell me my spinal fusion revision surgery, a 12+ surgery with at least a dozen ppl would be a two week recover. Not so much. Anything goes for the paraplegic.

Tomorrow I've got all planned out, my books, my bags, where and when everything will go, all the logistics that most ppl don't consider. I'm a surgery pro. There should at least be a chip or a trophy at some point, anyone? anyone? I know it's better to let it all out today than take it out on the medical professionals tomorrow.

see you when I see you.

Lived In Bars

noreply@blogger.com (sarah may scott) — Wed, 17 Mar 2010 22:18:00 +0000

Lately I’ve been thinking about my years in Manhattan. I realized a long time ago that it is highly likely, certain actually, that I will never return. Too many logistical, accessibility, and plain practical issues like the fact that every thing, place that is, is teeny-tiny and I require a five foot turning radius. Safe assumption it would seem.

I moved there in 2000 for my “dream job” at Martha Stewart Living Omnimedia, and shared a futon with my best friend for months until I found what can only be described as a garrett. Imagine a prison cell with a loft bed, only a microwave to cook with, and one closet. Also? The bathroom and the shower were in the hall, and I shared them with a mother and daughter who lived across the hall in a garrett of their own. It was across from the Natural History Museam, cheap, and in a “good” neighborhood, the Upper West Side. Yuppie central.

I commuted to 42nd street daily by subway, and always ran into this young pretty girl of money who was having an affair with the company lawyer. He was also in my sexual harassment class, which was funny since he continually left to take calls. It was all kinda crazy and fun for a hick like me, and I still remember those days with fondness.

My next apartment, after my first year was much better, having a kitchen and bathroom inclusive being quite the luxury by then. I had this crazy voodoo neighbor named Jimmy, about 90 lbs wet, who used to track my comings and goings and who was with me. He gave me more than a few lectures, particularly after a few more than eventful nights.

I had this terrible, terrible habit of pulling a “walkabout” in the middle of a drinking session. There’s that moment in the night when you know, you just know, if you drink this way, that you are about to fall over the edge and things will run more amok than per usual. One time I dodged out on my friend J., grabbed a cab in a blackout, and climbed up the four flights (72 steps) of stairs dropping the entire contents of my purse on the way (purse too). Jimmy told me about it the next day while I was dying of a murderous hangover, but he was actually more offended that I didn’t thank him at the time and just passed out, shoes and all.

Next, J figures out I’ve disappeared and like the gentleman he is, comes to my building to make sure I got home safe. I sure as fuck didn’t let him, but Jimmy must have heard the buzzing and let him in. Next, he chased him down the stairs with a baseball bat screaming about “she’s in no condition!!!!” over and over. Jimmy also claimed to have killed two of the landlords, brothers, but that’s another story entirely. Oh, and during our little chats, he made me eat split pea soup which was highly challenging considering how his place looked. Sometimes he left bananas at my door.

I digress. I miss those days, and I don’t miss those days. I miss my friends, I miss being the gal about town, I miss feeling important and effective, and I miss so much all the great concerts, parties, and events. The general pulse of the city.

I never imagined I would come back home, it would have, and did for awhile, feel like the ultimate failure. I had these hippie/gypsy/nomadic parents and I desperately wanted to be alex p. keaton. Christ, I even registered republican when I turned 18 out of spite, even though I always voted democrat oddly enough (never liked a bushie). But here I am, encased literally by bricks and mortar, in one of the more rural parts of the area where all three of my neighbors are all farmers or former farmers, and the rest is all cornfields.

My bestie now is my dog, and the thing about that is I was way to selfish before to own one, despite always, always loving dogs. At least for me, though I doubt now, I had to morph into this pushy alpha bitch who barely lived in her own home, I "lived in bars" much more often. None of the care or money that I’ve poured into this dog, and I have poured a lot, bother me one bit. In NYC, I was a selfish person because in a way you have to be.

Yesterday I had to get a tire fixed, and with some time before my dental appt next door I stopped in the gas station I frequent b/c it is full serve. I’ve learned how to put ppl at ease that it just comes naturally now, whether they know I’m in a chair or not, and this guy wouldn’t have known since I was in the car. Regardless, we get to chatting and he’s this really sweet man. I mention I have to get to the dentist, and he offers to let coco stay with his collie while I’m gone so they can play and hang out. Coco and Chixie, a dog hen party ensures. Stuff like that happens all the time, sometimes because of the chair but mostly, mostly because I smile a lot and I’m friendly, the total opposite of my life in NYC out in public where you scream for your coffee and they push you out the door. Alpha bitch gets you nowhere around here, absolutely nowhere.

No garrett anymore, but I miss those days from time to time, just the pure wildness of it all. About four years after I moved there, a day came where I was walking down 23rd street and I knew in an instant I had to move. Just like that, there was no question. Which is when I moved to Philly and later ended up here. Same with Philly, one day I just had to go, and I’ve been here ever since, five years and counting.

Sometimes it’s great here, sometimes I’d dead bored, sometimes I dream of leaving. Mostly, I love the sense of permanence I never had before, the alex p keaton corporate lifer in reverse.

Officially, I’m a card-carrying democrat now. I think that’s progress.

investment, circa 2008

noreply@blogger.com (sarah may scott) — Tue, 26 Jan 2010 21:59:00 +0000

I'm terribly insecure. Sometimes I maniacally press the PUBLISH POST button or I'll lose my nerve and then spend the next hour editing out the obscene amount of typos and grammar horrors (those still remain, I know and choose not to care). Bearing your soul when you're at the bottom of a well with legs that don't work isn't easy, and as you would expect, filled with self-doubt. I wrote this 2008-06-28, which was about the time I *think* I started going for broke. The things I was bitter and rage-filled about were all unfinished business from before the accident, things that intensified when I got hurt and led me to alienate just about everyone. Total pariah, but like many pariahs, tragically understood, or at least, that's what I'd like to believe. Then I read this short story and I cried and cried, and I felt like, how the fuck longer can you keep this up? How long can you hide, pretend that everything is going to work out like you planned, like everyone in rehab told you it would? Looking back, I see so much of my life as a Sisyphean effort to push away who I was, what I was, what and who I am. At this point, I was starting to feel scared that ppl I knew would be reading this and it could get ugly, could get ugly for everyone involved. Someone said fuck 'em, let it ride. It was either stay in the box or break out, and two years later, I'm still going for the latter. And fuck 'em anyway, this is my life and my little therapy haven. The only thing I can't believe is that I'm still at it, hopefully hopefully improving in a lot of ways despite the rough times.

i've been toying this week with the idea of branching off to yet another blog so I can stop the self-censoring and start writing from the heart again. but I decided, at least for now, that i'm not ready to walk away from this investment if letting a precious few get to know certain aspects of me. it may not seem like it to you, but it took me years, months, to say and show so much of what is contained in this blog, even if I haven't made it seem that way.

this week, I just don't have the energy to start over again either. I've spent much of my adult life, even prior to the accident, in a perpetual state of starting over. trying to escape the mistakes and shame of my past in whatever way felt fashionable, or at least inevitable, at the time. but now I'm 32 (34), and I live with chronic pain that this week has escalated in a major way that has left me emotionally exhausted trying to wait out the current storm, and starting over, even in just the blogging world, feels like more effort than I've got left.

I hired and fired an aide this week, after having her in my home for a grand total of 3 hours. Any other week, I may have brushed aside her patronizing kiss on my forehead, her offer to be my "part-time mom" and thought it was better to have really annoying help than no help at all. but she had already shown herself to be unreliable and inconsistent, and once she mentioned she wore a fetanyl patch and took norco for her fibromyalgia, I immediately decided she was through - I know an addict when I see one, and it would be more than unwise to trust a person like that in my home. so she's gone, though I told her I had simply hired someone else I felt was a better fit.

since I started having attendants in and out of my life, the hardest part when they don't work out is that you've not only spent time training them, but you've also exposed some very embarrassing aspects of your private life to them. I've opened up myself and my home to this person, and when it doesn't work out, I always feel a bit taken. so in the case of this person, I'm really glad the investment on my part was minimal. most of my blogging, with some few exceptions, has been about limiting my investment, keeping things at arm's length so I don't feel so raw and exposed. but in trying to keep myself hidden, the blog ends up feeling inauthentic and being largely uncompelling. my addiction has been shame my entire life, and it's perhaps even more unhealthy than having an opiate addict entrusted with my care and my home.

so as far as this blog goes, you're stuck with me for at least awhile longer. progress and insight may be minimal for long stretches, but I'm slowly figuring how to speak honestly and openly about my life without going overboard with TMI. the truth is that I can't keep running away from who I am, and at this point in my life, I don't have the energy to keep pretending. I so deeply do not want to be defined anymore as an overwrought drama queen, but I am sometimes, and that's okay because it's not the only thing that defines my life anymore. I've come a long, long way since those pathetically awful days, and I just can't carry the shame for much longer. I'm figuring out that forgiving myself for making those mistakes doesn't mean I'm absolving all responsibility. I don't have to keep blaming myself for being an inept adult, because it wasn't entirely my fault I didn't know how to be normal or content. What I have to continue to do is grow up and stop letting the past hold me hostage.

three years ago, while racing my bicycle, I went around a turn and ended up "tits-up in a ditch". but the reality was that I was "tits-up in a ditch" long before that day, I just didn't know it. I've avoided really talking about that day and all the stuff prior to it because it felt freeing not too be defined by it. but I'm starting to come around to the idea that talking about all the darkness that led up to that day will be another step towards my process of rehabilitative redemption.

I'm 32 (34 and counting) years old, but I'm just starting to make it as an adult, and a disabled one at that. Nothing in my life has ever been or come easy, and growing up will not be an exception.

for the literary, metaphorical version of this post, read "Tits-up in a ditch" by Annie Proulx. it's a pretty damn close allegory to my strange and tormented life. i'll try to keep remembering that it doesn't have to define me anymore.

special thanks to the person who gave me "permission" to put this out there. you know who your are.

s

notes from a recluse

noreply@blogger.com (sarah may scott) — Wed, 20 Jan 2010 22:12:00 +0000

One of my very closest friends, a women 20 years older I met at the dog park a few years ago, moved across the country this fall. From the moment we met there was a definite affinity between us. I don't really know how to describe our friendship without sounding like a total asshole, so I'll just leave it with whatever we did, where ever we were, it was one hell of a fun hen party that was foreign to the rest of the flock, which at once confounded and attracted the roosters out of sheer curiosity because we just didn't give a fuck about the things we were supposed to. I'll never forget one particular afternoon we were drinking wine slushies on my patio with our three dogs being neurotic in each other's company, laughing like hyenas, while a couple of toolbelts lurking about had these curious smiles while trying to act all cool, taking their sweet time trying to understand and perhaps wanting in. Which only made of cackle more, and somewhere along my cement bunny got it's head chopped off and I knew there was at least one person who was alienated as I, which was actually pretty great. Adventures in crime and misantrophy.

I was already sliding into this deep and ongoing depression when she left and it didn't make it any easier. I don't blame her leaving for becoming my becoming a recluse, but it was certainly a contributing factor. We had a lot of fun together and it's not easy to make friends like that, esp. here in a small town. Add that to being a bit of an alien that has nothing to do with my disability, it was hard even bother to find others who could relate to the many states I have found myself in over these past few years, or that I could relate to.

Soon enough I was crying all the time and going out was a gauntlet of impending hysteria. It meant sunglasses and hat at all times to put up a wall, shorthand for hiding in plain sight in the case I was crying, or felt suffocated by the staring crowds, or if something went wrong in some minor way. Eventually it wasn't enough and I felt so much dread and panic I could barely leave my house even for dr. appts. The medication to cure this made me noticably shaky and foggy, barely able to form words and gave the appearance of a drunk with the DTs. So I stopped going out, I gave up, I surrendered to my fear for perhaps the first time in my life. I truly, truly gave up and allowed myself to be consumed by agoraphobia.

Depression and panic attacks are not anything new to me. What was gone were my old ways of coping, generally through binge drinking and self-destruction. I never meant to get sober, but it started to creep up on me little by little, a gradual process I was wholly unaware of. I remember CS and I were out to dinner drinking our gin and tonics, and after one, I was done. Just...done. Maybe we split another just to prolong things, but there was absolutely no impulse to keep going, no desire to go to that place of false relief and bad decisions, going for broke to stay broken. I didn't even consider it that night, and fuck if I had plenty of reasons to get seriously fucked-up. It was the very first time in my life I understood what it was to be a social drinker.

As time wore on, which I would later realize paralleled certain events, I developed a certain kind of neutrality towards alcohol which is difficult to put into words somehow, it just lost a place in my life. It was just gone from my mind, forgotten despite having plenty in the house. I only drank to be social and I really didn't find much enjoyment in it unless it was disguised in the form of a dense and bastardized wine spritzer, slushied in the summer, with little taste of the wine to be found. Being a big fan of the boxed wine (so economical! stays fresh!), I knew something was very, very different when we discovered the wine had gone bad. I didn't even think that was possible.

This was happening during the time I discovered al-anon and started this process of digging up the past and and making myself face years and years of pain. Al-anon was at once a memoir and map to a better future. Facing and processing all the things that made me a dry drunk which is in my opinion more destructive and harder to escape than achieving sobriety. It's a life long commitment to change, and I like to think I've made a lot of progress which I attribute to freeing me from dependence on alcohol as a release valve, a sleight of hand to hide my lack of self-respect, lack of self-esteem, my fear of being found out, and a way to keep people at a distance from the ugliness I felt to the core of my being.

The web feeds my addiction to information of all kinds, and I randomly or not happened upon an article about this professor who was constantly drooling and sleeping his way through staff meetings. Once a raging alcoholic, he had started taking baclofen, primarily used to treat spasticity with the major side effect being somnolence. From what I recall, it eventually subsided to the point where the drooling stopped and as long as he continued taking it, he was, in effect, cured.

And I really mean cured, or at least a kind of sobriety that comes from brain chemistry and less with 12-step programs. Baclofen is more effective and safer than any of the drugs that were specifically developed for alcoholism. The biggest impediment to efficacy is getting patients to tolerate the initial side effect and continue taking the medication adjusting as needed. The shit is amazing.

As many of you know, and here's the earlier article, I got a baclofen for severe spacticity that made my life an utter hell. The amount I had to take orally was massive and didn't make a dent other than turn me into a zombie. Through all these random events which I will fully attribute to advocacy, desperation, and sheer luck, I got the baclofen pump "installed" which allowed for higher doses without virtually no side effects because it was administered directly into the spinal canal. It took about a year to find exactly the right dose, and this is the event that paralleled my eventual sobriety. After reading the article and nosing around some scientific papers, reading this book*, I was sold, I truly believe this is the cure for sobrity, though not by far the behaviors the prevent maturation. (x-ray here)

Back to the present, I'm depressed as hell but on the right path towards adulthood at 34, and no longer able to put up the old roadblocks. I was a sporadic binger, but they were always destructive in so many ugly ways I wish I could forget, though the blackouts are by far the parts I wish I could "forget" the most. Maybe another post I'll get into all that craziness, but it feels now like it was an ersatz version of myself going through life on a broken record. Baclofen changed all that.

Just when I thought I had cried away all those years, faced my grief, learned to be comfortable in my own skin, it all melted away and I was utterly lost how to find my way back. So I stopped participating in life, and felt a total ambivalence to surviving or living. Just unrelenting inability to engage other than tears and rage, which had no place in public life, esp. when under such scrutiny already.

I was on some medication that was absolutely not helping, it just flattened me out and was no way, no way to live. It seems the only tiny indication that I want to get better is that I have been utterly trusting and faithful to the doctors and nurses who are trying so hard to prop me back up. I believe them and their methods despite times when I want to chuck it all. We did eventually change things up and I am starting to feel better, certainly much better physically as well, particularly after dumping the respective med.

Somehow, all this turmoil has brought me closer to my father and brother, who seem to have accepted this as something I need to go through. I've never been in this position, or allowed myself to be so accepting of help, but I didn't really have much choice, things being so extreme. They get me groceries, prescriptions, help me with the house, and generally take the things I can't handle, which for a very long time and still is most anything in the outside world. My aim at times is to one thing accomplished each day, no matter how small or inconsequential. Kinda pathetic.

Slowly, so slowly, I attempt to do the small tasks of life and even write. I do the dishes, I do the laundry, put things away, answer the phone, return emails, all the things that make up a life. Maybe I can do one or two of these things one day, none the next, but still a slow ascent continues.

My father had major surgery on New Year's Eve which was terrifying in so many ways, as anyone who begins to grasp the mortality of a parent. Thankfully the surgery went extremely well and he's feeling better and better, but it was awful to not be able to be there through the whole process, and knowing how much he wanted me there. I would have been, in a heartbeat, but I had to concede to my limitations, the weather, and letting his Ladybird, dear Gigi, take that part, surrendering my role. I may be a seasoned pro at surgery and hospitals, but I recognize it's also time for him to stop being so concerned about me and get along with his own life. That might not make total sense, but I don't want him to spend the rest of his life hostage to the day his Bunnygirl broke into pieces.

He came around a few times since he got back, my brother drove him over because he's still to weak and in pain, just to make sure I was okay and because me missed me and knew how scared I was. Two days ago, I got up early, left the house with Coco in tow, picked up two chai lattes and two cinnamon rolls (which I ate both of the way there, I'm kinda crazy for pastries and it's bee a long, long time since I'd had one) and went for a visit. My brother happened to stop by, and we laughed and chatted like a family should. And thank christ to having toolbelts in the family who fixed my flat tire in less than five minutes, the whole visit was proof that change is possible. I cried the whole way home, and I felt happy.

*side note about this book, one study which eventually published based on a single individual who just happens to be a doctor does not make fact. It is more a memoir of sorts that is strictly based perspective of a health professional and one man's experience, and a man with very significant resources at that. He dismisses the plethora of people that already have the pump which is a statement in itself. He is also highly dismissive of the pumps for reasons that seem to argue that addiction is not to be treated as a disease. Diabetics have pumps to manage their disease, so if we truly believe addiction to be an actual disease and not just a pain in the ass state of mind (in his case, the root is anxiety), why not at least explore the option. Compliance would no longer be an issue, side effects minimized, and not at all as dangerous as the man makes pumps out to be. I will now stop preaching.

the yard

noreply@blogger.com (sarah may scott) — Wed, 16 Dec 2009 21:14:00 +0000

It was just a piece of garbage, she said, not even looking up as she flipped through the pages of a glossy gossip magazine, chock full of air-brushed bodies pushed to perfection by the machinations of Hollywood and fame. A rotting piece of meat that had to go, she continued, explaining from her wheelchair, across the bench where I sat in mine, how she had become legless.

We were in what I had come to think of as “the yard”, the daily place of reprieve for prisoners of broken bodies, broken brains, stuck in our hospital cells until we were fully rehabilitated and sent off into the world, wet as newborn babies and aged a thousand years for every day we endured there. The yard was stretch of concrete outside the main entrance to Moss Rehab, the visitors entrance. It sat on the top of what seemed like at the time the steepest and scariest hill I had ever encountered, and overlooked mostly parking lots flanked by windowless buildings and a small green space cordoned off by a faux forest that deer occasionally emerged from to feed from the apple trees. There was a humming sound of traffic from the outer world, but that was as close as we could get.

Those of us who could even be in the yard were in the most terrible terms, the lucky ones. The floor I was on had two wings, the spinal injury and stroke/brain injury. We were separated by the physical & occupational therapy rooms and the adjacent cafeteria, and we attended to both together without ever acknowledging each other’s existence. We reflected each other’s remaining nightmares, a look through the dark side of the mirror, a horror show of the things we had left that could still be taken. The stroke/brain injury patients, for the most part, didn’t linger in the yard. The ones that did generally had an escort. The rest wore low-jacks that locked the doors if they wandered, and slept zipped into securely tented beds. No Rita Hayworth or rock hammers. For most, this was going to be the rest of their life.

I don’t know when during the two months I was at Moss I started wandering up to the yard, but I do remember it felt like a marathon of pain and humiliation to get there. I was still wearing the TSLO, also called a clam shell, turtle shell, Madonna suit - a ridiculous piece of plastic that was supposed to keep shattered bones stable. Underneath I wore a stretchy ace bandage corset sort of thing (abdominal band) that was supposed to help me breath and cough if necessary since my abs were useless. My boobs were too big for both and I generally looked and felt like shit the entire way. Doors without automatic openers, the ones that were rigged to lock, were confounding to open, sudoku for the newly paralyzed. Through those doors onto a teeny elevator with the visitors who at times looked as scared as I felt. Up the elevator I’d emerge into the lobby, the gift shop, and off to the right the cafeteria, full of people in various states of shock and acceptance on their way to visit, plan the next steps, or finally get to the aftermath of whatever had led them to rush to this place. It would be my first experiences with the stares, the uncomfortable glances, the sneaked peep, all of them full of the same questions, mostly one in particular. For however fraught that journey was from hospital bed, the wing full of beeps, agony, neglect, disdain, pity, pain, anger, fear, empathy, sympathy, and endless unconditional love, I had to see and be a part of the outside world again so I could feel my existence as a person and not a patient.

Those in the yard spilled out from floors and wings, all of us grouped by our own devastation. There was a girl, maybe a bit younger than me, who would sit down the hill a bit with a sister, mother, aunt, friend, or whoever, silently working their way through magazines. She wore a helmet with a rainbow chin strap that meant something in hospital speak. Sometimes during physical therapy doctors would show up making their rounds and she would take the helmet off. She had wispy short hair that had obviously grown in after being shaved off. Half her head was caved in with giant stitches, so brutal looking, so startling for someone who probably just like her woke up on a different planet one day, I have no recollection of what her face looked like. I’m not sure that I ever looked.

There was a sweet-looking young african-american boy with an ostomy bag hanging from his pajamas, the result of a gunshot or maybe a few, whose spent his time making out with his girlfriend when they weren’t eating out of Tupperware containers she faithfully brought. There was a biker guy who wore biker civvies and spent most of his time going up and down the sloped driveway in his wheelchair, using his feet. Sisyphus in action. I guessed he was bored and hoping to get stronger and break out from whatever was keeping him there. I was insanely jealous of him, like all the others I saw in wheelchair who propelled them with their feet.

Then there was the Hamburger family, practically legend, first by name and second by mode of entrance. I can’t remember the timeline of who went first, but the wife or the husband was there for a broken hip or a replacement. The other went to visit and fell, breaking their hip. I always wondered, hoped, they got to share a room and either watch TV in sync of gripe at each other over their choices. They had a large family who flew or drove in from all over the country, gathering all together daily, like some strange ongoing holiday. The Hamburgers and their damn hips.

There were always a smattering of amputees, they seemed to have more mobility in general than a lot of us. The cascade of diabetes chewing it’s way up their legs, taking feeling and prolonging infections to where things started to go. Arms, hands, above the knee, below, multiple, single, accidents, disease, complications, they were all there at one time or another.

The yard, closed and concrete, was like a halfway house for all of us and our visitors if we had them, to imagine getting a handle on things if we could, if we even wanted to. Lots of meditative smoking, and not just by the patients. Doctors, nurses, aids came there too, some to rest on the bench, some to smoke, some to take their breaks, and whatever other reasons they had to escape the confines of the hospital. They didn’t stare or look at us in wonder, they were on reprieve too. There was a nurse that used to get in her car for her break. At the time I thought it was so odd, but I understand now.

The woman with the “garbage leg” was a diabetic who had been a single leg amputee for a considerable time, she had known the other would go eventually too, so she said. I asked her what she did for a living, or maybe what she had done, and she had been a sort of nurse aide while she had the one good leg. I say aide because where she worked there were no nurses. She stayed awake all night with a baby monitor, maybe more than one I believe, so the parents could sleep and she could keep their baby alive. These were babies who wouldn’t live, hospice babies at home with their parents, ventilators and machines keeping them alive so their parents could cherish them for each and every moment they had left in the world. She would watch tv, read, whatever, and wait for the monitor to go off which meant something was wrong with the vent. On one leg she’d check the vent, making adjustments but mostly suctioning, keeping these cherubs alive until their parent woke up and took over. Sometimes she was there to wake up the parents when their baby closed their eyes. Other times the agency simply gave her a new address, a new family. Down the second leg, she wouldn’t be working there anymore. All this, flipping through People magazine, just flipping away at those ridiculous lives. After she left, I couldn’t find it in me to move. I sat their past dinner, past the time my pain medications ran out, past the sunset, until eventually one of the nurses came looking for me. It was bedtime.

city

noreply@blogger.com (sarah may scott) — Tue, 29 Sep 2009 19:44:00 +0000

city
Originally uploaded by sarah may scott

I made this on 9/11/09 for my own remembrance of that terrible day and the days that followed.

Reader email

noreply@blogger.com (sarah may scott) — Fri, 31 Jul 2009 15:23:00 +0000

Reader email:

I've noticed a recurring theme in your artwork:

Is this intentional or coincidental? Obviously, it could be either. Those forest roads make for beautiful shots. However, a human subject is always featured, not unlike that great collage you made (which, by the way, I was happy to hear is the glue and paper kind--I assumed such).

I had told you that I'm drawn to work that deals with the relationship of the individual over and against society, so I'm intrigued by how your life experience seems to affect your work so directly. When I read your blog and look at your photostream, they complement one another so perfectly. So, when I read about the limitations you deal with due to your injury/pain management/struggles with depression, and then see work involving a human (yourself or other) on a path with dense forest on either side, maybe (in my interpretation) representing a journey with few options for deviation, I'm intrigued. But seriously, I'm not trying to psychoanalyze; I'm just interested in inspiration/motivation.

I've simply been impressed with your level of introspection in your blog lately, especially the piece on the Henry Louis Gates arrest and your personal reflections relating to it. Your writing made me reflect on some of my experiences regarding race relations and how people interact with one, whom they view as being "other." And as introspective as your writing is, so more so is your photography. I think you offer a lot to people who are dealing with isolating issues and find it difficult to be reflective or who have no outlet to express their experiences.

Of course, I realize that I probably wouldn't even be writing to you unless your work spoke to something within me in a particular way, like your "ink blot" theory above. I should probably be introspective or psychoanalytical about that fact.

That being said, I love this photo:

Unless viewing big, and even then, it's hard to see that
your image is an exposure trick, so it looks like you and
the trees are intertwined. My first take was that it speaks
to your hiddenness/confinement. Now I think it means that
you're emerging. Just my interpretation...

four years

noreply@blogger.com (sarah may scott) — Wed, 29 Jul 2009 20:06:00 +0000

Today is the day, four years ago, that I became paralyzed. I believe around this time my father had arrived, and was sobbing while the doctor explained to him, though never to me, that I would require a wheelchair for the rest of my life. I was lucky to be alive at all that day, though for a long time I wasn't sure I considered it good luck.

Each year that goes by I take some manner of mental inventory and wonder if any of it matters. I've been dealing with severe depression for a few months now, getting slightly better here and there, but overall is continues to fester.

All I can really say about today is that it is filled with a lot of grief and self-doubt.

Where are you going, where have you been, does it even matter?

'86'd

noreply@blogger.com (sarah may scott) — Sun, 26 Jul 2009 23:48:00 +0000

I used to work for this restaurant company at their "classy" establishment. After work, I would spend what I made in the basement bar, where my boyfriend worked and I think everyone knew I was dealing with something pretty horrific. Or maybe they were just used to taciturn women gluing themselves to bar stools, hard to really know who knew what anymore. But among restaurant employees, this was standard practice for any level of crisis. Crisis wasn't much more than an awesome excuse to go on a massive bender and behave destructively. That's family in the restaurant world.

I liked being in the dirty basement bar with the predominate male vibe, a place where I was right at home. The men in my family take taciturn to record levels, and so I was right at home, drinking my face off, and being, well, kinda ignored. Mostly the staff knew I shouldn't be bothered by the hoards of drunken men, so they generally would step in before I would have to say a word. I had my one drinking buddy, Cruise, a smart, shy guy who for reasons I still don't really know, was always up, at any hour, to sit next to me at the bar for hours of drinking and silence. I miss him, when we did talk, he was a really good man and I truly liked him, as much as I could like anyone being as self-centered as I was back then.

But true to my nature back then, I managed to get myself kicked out plenty of times, or cause trouble in other ways. Actually, now I remember, my older brother was working there for awhile until he met his future wife and morphed into a new person. The times I wasn't taciturn, I could also be the life of the party and attract plenty of men who were not my boyfriend. Of course, one of them had to be another bartender there, and while J never said a word to me about it, I think he came close to using his black belt on this guy the next day. Good thing he didn't, because after a marathon make out session walking back to said bartender's apartment, we get into the living room and all he has are these really low beach folding chairs, which immediately buckled. I decided it was time to go home and off I went, as I always did, on my "walkabout" (get way to drunk, sneak out), before anything worth killingbill over happened.

I wanted to feel loved and safe so desperately, but my heart was so crushed, and since I couldn't tell anyone why I was so insane, I could never get very close even though I tried and tried. There was this one guy, T, shit, another bartender, who had just broken up with his fiance and was on the get-drunk-and-be-crazy ride too. We had about the most perfect relationship for both of us at that time, which was we'd both be out getting drunk and crazy and sexy with anyone we wanted, but closing time we'd meet up and go back to his place. We both needed someone to hold through the pain, someone who wasn't going to ask anything in return, it was the most either of us could muster with our broken hearts. It was totally out in the open too, he used to tell, christ-ah, the other bartenders that I had the best tits in the joint, and I would turn bright red and they would laugh. He called them "orgasmic melons".

My behavior continued to decline, and soon I started getting kicked out of the bar I had set up a second home in. The details are hazy, but the bass player for the band got into it with me for reasons I to this day have no idea why, so I poured a beer on his head. 86'd for that one, though I was semi-legend the next day among the staff. I knew it was my rage getting out of control, and was horrified at the prospect of burning a bridge to my main source of comfort (the only bridge I cared about at the time). Another time I fell over backwards off my bar stool, though I don't think it was the first or only time, I just can't remember anymore. It was always something back then.

The reality is that I wanted to '86 myself in the most passive-aggressive way possible. I felt this deep, dark, ugly need to destroy what was good in my life, in myself, as this twisted way to feel all the pain I had stuffed away for years and years. If anyone ever tried to talk me off the ledge, I would be infuriated because they didn't understand. That was my excuse for all my behavior, that no one knew what it was to be me, what it was to have pain so deep that destroying yourself was the only way to deal with it.

I used to look back and feel so much anger at myself for behaving so foolishly, even though it was years until the patterns would truly cease, but these days I understand that it was the only way I knew how to deal. My childhood was one that you held it all inside, you didn't talk about it, you knew to pretend it never happened. I didn't know how to ask for help or even how to receive it. The only thing I knew was that I wasn't going to be ignored anymore, my pain was going to exist and exist and exist because I was so full of rage over the unfairness of life and I had no idea how to deal with it.

That's part of the reason the Al-Anon stuff spoke so strongly to me, especially the parts about living my life truthfully, though that's something I've been working on for the past year. Saying I'm sorry, admitting when I'm wrong, asserting myself, all the things mature adults are supposed to do. It nearly killed me to face a lot of it, but facing all these awful parts of me and living through it are the main reason why I'm finally starting to feel at peace with myself, and maybe even start to love myself.

It will be four years on the 29th, and while I'm proud of my emotional progress, I know I have a long way to go towards building a life again. I want to work, I want a child, I'd like to have more friends that I can actually relate to, I want it all despite my limitations. I'd like to contribute to society with my photographs, maybe even build some manner of journalistic career. Can't believe I just put that in writing, but there it is. I've stopped trying to picture how it will all happen, for once, I'm just going to let it.

For the first time in my life
I let myself be held
Like a big old baby
I surrender
To your charity

Smog

view pic larger On Black

PTSD

noreply@blogger.com (sarah may scott) — Thu, 23 Jul 2009 00:57:00 +0000

I pulled in to the pain clinic today, when I realized for the first time in the two years since I've been going there, that it shares a driveway and is directly across from the place where the big giant thing happened that about killed me when I was 20. And I wasn't even there when it happened, nor did I find out until some days had passed. That day, when I found out about what had taken place, what had been taking place for so long, I lost a part of myself that I don't suppose I'll ever get back, and began a long descent into a very deep, dark place that all but obliterated my life as I knew it.

The shock of it was more than I could take, it was as if every single thing I thought I knew about the world, everything I took to be true, had been a lie. I was, after a single phone call, a fool for believing the world to be truthful at face value. I was shattered in a million shards that I couldn't, I just couldn't let go of for so long, because I wanted, needed, to feel the fury and see the blood. But at the time, I couldn't, because I was needed to help clean up the mess, and it was a mess that soon came to involve me too in unimaginable ways.

I couldn't tell anyone, not my friends, not my teammates, not my therapists, not any of my professors even the one who begged to know so he and his wife could help. Mostly people assumed that I was going insane because my parents were getting divorced, but that had no bearing on the situation. That was actually a good thing that was long overdue. But it left me to be the hero, the leader, the role I had always assumed for as long as I can remember.

Depressed beyond belief, I kept on functioning, or at least trying. I would steel myself to clean up whatever mess had cropped up, and then I would go back to my apartment and fall apart. I stopped going to hockey practice after falling apart in the middle of one session, and I never returned and no one knew why for many years. Most probably never did find out.

When things started to level out was right around the time I turned 21, and it was as ugly as you can imagine, but probably uglier. All I wanted to do was forget and feel some sort of comfort, and alcohol was an easy way to do it since I was working in a bar at the time. Escape soon morphed into utter and total self-destruction, and bit by bit I set about destroying my life.

I lost most of my friends, though there are still some that remain. I burned bridges and danced in the flames, laughing and crying at the farce of it all. I didn't know what mattered or who mattered anymore, and as the sadness lifted the rage began that would burn on and on and on for years to come.

As time passed, things inevitably became less severe, but it was always there, just waiting for any show of weakness to break through. I survived, but carried this bitter pill of victim hood with me for a long time, which I later realized stretched back much farther than this particular incident. The incident was just the proverbial straw that unleashed all the pent-up trauma of my childhood, though it took another 10+ years until I fully believed it.

I managed to build a life for myself anyway, wishing when I moved to NYC that I would leave it all behind. I faked it with everything I had during those years, though I can't say it was all roses by any means, but I managed to move forward and that seemed like the most important thing at the time.

By the time I got to Philly, I really started to actually make a life for myself. I still had my slip-ups, and was far from realizing all the al-anon symptoms that I've just started to scratch the surface on, but somehow I felt free from it all for the first time in a very long time. I felt like I might just be okay sometime soon if I could just go back to who I used to be. I really did feel good about myself. I was committed to healing all those old wounds.

In the midst of all this, and I'm skipping a lot of stuff here, was when I got hurt. Some of my friends said if I hadn't had the previous year of healing, I wouldn't have been able to survive emotionally, and I think they are right. I can't believe it's been over ten years, that I could actually be going to this site over and over and not make the association, but I know there is a lot from that period that I somehow blocked out of my memory. I guess that's the trauma part of it, that need to forget so deeply because if you didn't, you might not have survived. I know there's a lot more stuffed in this brain of mine that hasn't surfaced yet, but I have a feeling it's going to soon. I think, or at least I'm hoping like hell, that I'll be ready for it.

alone in the woods

noreply@blogger.com (sarah may scott) — Wed, 22 Jul 2009 01:12:00 +0000

Before I took my SCI, if I had only been a bit smarter and a lot more enterprising, I could have had the world at my feet, the male world anyway, the one with all the money and power. I was blonde, 38DD, size four, and otherwise the body of an athlete. When I was in NYC, I knew what neighborhood I was in by catcall (Miss America through Washington Heights, no idea why). I could act, and I did act, like a hot mess wildebeest shrew on acid and men would still desire to be in my orbit and do favors for me.

I knew something was different from the view of the chair immediately, though it took me some time to really understand, or maybe admit what had happened: I was no longer desirable physically, and therefore, unimportant. But way beyond sexuality, because that's not really what I want to get into here, was the cold hard truth that society in general thought differently of me, and I was suddenly in this very strange and new position of having to prove myself constantly.

The first time this truth became inexorable, was the day I was assumed to be retarded. That was pretty much horrible, and from that day forward the rage began to build. People everywhere, not all but most, were uncomfortable around me and I did nothing to alleviate this, so generally life was pretty bleak. It was like I had become a different person, a person people didn't gravitate to anymore, a person who would make your life more difficult, a person in the way, a person who was bitter and whiny, a person you knew you shouldn't stare at but did anyway. So much innate curiosity about what "my deal" was on everyone's mind, everyone wanted to know and many couldn't see a thing wrong with asking, you know, please share with me, your grocery checkout girl, what the hell happened to you? I found myself a stranger in my own town, all because of my sole method of mobility, being pre-judged on a constant basis and generally not in a good way.

The realization was that I had become a minority. I live in a small, homogeneous, white town where not too far away people burn their lawns instead of mowing them. Different is a remarkable thing, and depending on what brand of different it is will depend on the stock reaction by most.

But there was one time I went to the grocery store, prolly in my second year of being injured, and for the first and only time, I wasn't the center of attention. That belonged to a white man with two black children, who I hate to say this practically shut the store down people were so astonished. This may be small town america, but it may as well be a microcosm for the rest of the nation, as evidenced by this particularly abhorrent story.

Wealthy black man and his chauffeur break into his home because he forgot his keys, and a "passerby" (riiiight) called the cops, and an altercation ensued in which the home owner called the cops racist etc etc. Before I'd even heard about the actual story or read the article, I read some blog, who I'd prefer not to name, who posted a partial "transcript" and commented about "who's the asshole here?" implying naturally that the home owner is simply an overreactive jerk. I'd bet that blogger is a white man, and would be shocked if I was wrong.

What gives anyone the audacity to judge the life experience of another person? What do we know about this man other than he had a long trip on an airplane, gets locked out of his own home, and the next thing he knows cops are questioning the veracity of his ID and seeking the involvement of Harvard University. Do you think this is the first time he, or someone he knows, has experienced prejudice? Didn't anyone see "Amos and Andy"?

Remember the great "Real World Candlestick" incident? And the big argument that Becky was a racist? Well she was, only the problem is that she has no way of knowing this because she's not in the minority, but Kevin is. I had no idea, I was just as ignorant, couldn't believe what an asshole he was, how over the top he was acting. But today, I know that racism isn't just about white hoods and violence, it's about all the teeny tiny ways it has seeped and spread virally into our culture and we all pretend we're not infected. Privilege, more than anything, is blinding.

Besides all that fancytalk, haven't we all just had too much and lost are shit from time to time? Fuck oppression, isn't enduring the bullshit that is flying today enough to take a normally sane person and turn Bruce banner into the hulk? Haven't we all felt like that at some day in our life? And if we've been oppressed and profiled along with others like us, don't you think you might one day go after the messenger?

I for one, have done it a lot, and as such, I've written many, many apologies explaining why I wasn't myself on that particular day. And every once in awhile, I wish someone would apologize to me.

I am ready to be transformed

noreply@blogger.com (sarah may scott) — Tue, 14 Jul 2009 17:42:00 +0000

I'm a goodwill junkie, and I've found that sometimes I pick up objects with one intent that end up revealing so much more. One of these items, was this tin cup:

I had some vague use for it related to the darkroom I've been scheming to build for months, but then it hits me what it really represents considering the situation I'm in. There's something very Freudian about it, but I couldn't really explain to you what.

I also buy a ton of books, some to read, but most to collage with, or at least that's the initial plan. So I pick up "12 Steps for Adult Children" because I'm thinking it might be a good source for quotes and graphics. I was partially right on that one.

I start flipping through, and I quickly start tearing apart relevant sections for my art journal. I stayed up an entire night consumed with this rendering this book into my own, crying on and off the entire time. All these deep, dark secrets I've held in shame for so long were all there on the page, and it turned out it wasn't my fault.

So much of what I've been going through this past year has been about changing things about myself that were dysfunctional and/or dishonest. Most of all, I'm trying so hard to grow up and live a truthful life, and it's not an easy thing to do. Amends have been on my mind for a long time, some I've made, some I haven't quite figured out how, some I haven't the cojones for yet, and some are simply better left alone. Growing up is a long and painful process if you never learned how, and somehow this book has made sense of it all.

I'm kicking around a project of putting together a larger version of my art journal, but until I figure all that out, I thought I'd start showing snippets in the meantime.

View Larger

the forest window

noreply@blogger.com (sarah may scott) — Tue, 02 Jun 2009 04:13:00 +0000

I drove up to the summit of a nearby mountain with a state-maintained view spot and spent a few hours there waiting for the sun to set. On the bench next to me sat a college student sketching for his art class. He was very chatty, and like most kids his age, he delivered statements of great gravitas with a straight face I initially found highly amusing. His first question to me was "Come here often?" and I paused a few beats wondering how I was supposed to answer.

It was kinda surreal being in the same place with this guy, he was the spitting image of someone who I once wished would love me back when I believed being alone would kill me. I questioned whether it really was him until he remarked he just made three years sober, something his doppelganger had never managed to be in the short time I knew him. I really wanted to ask how you come to get sober at the age of 18, how you can be 21 and already beleagured, cause it seemed like something you should have to answer for directly after such a declaration at such a young age.

But I didn't ask, maybe because I didn't want to get involved, but also because I didn't want to share my story which would have been the next logical topic 'cause it always is. And no matter how short and to the point I make it, it's never enough. They always want the full details, all the guts and gore torn out of me on cue so they can understand something they will never come close to understanding because they can't. It won't occur to them that I'm anything but rude and bitter if I don't oblige their curiosity or if I don't make the story grand enough, and it really just isn't all that grand to begin with.

The after is where it really gets grand, gets epic, gets to where one memoir could never be enough. Truly epic shit doesn't start to go down until the very moment you decide to start living again, to start crawling your way back into the light and out of the darkness. I know enough to know now I'll never fully leave the darkness completely, but the reprieves at this point seem to be enough to keep me going for now. sometimes. But no one wants to hear about the after, because it doesn't arc as much as it shakes and shudders in fits and spurts until eventually you recognize an ersatz normalcy has filled the void you left somewhere in all the fallout.

When the sun finally set, the boy and I went our seperate ways, and all I could think about on the ride home was what it was to be that age and think you had all the problems in the world, the downtrodden everyman at 21, without irony. I wonder if I'll see him again at the same spot and what he'll want to know. I wonder what I will tell him.

rehab, part one

noreply@blogger.com (sarah may scott) — Sat, 23 May 2009 02:38:00 +0000

A week into my new life as a paraplegic, I was transported from Altoona Hospital to Moss Rehab in Philadelphia via the longest ambulance ride known to mankind. Different hospitals perpetuate different myths and antiquated standards of care, which for Altoona meant taking me off the IV pain drip and putting me on tablets of Demerol under the premise that I couldn't go to rehab with an IV (100% wrong). I was still only days out of a massive spinal surgery, a tinker-toys looking effort to stabilize the broken pieces my fallen humpty vertebrae and the reason for the pictured scar, at least in part (more on that another time). The demoral didn't come close to being a replacement for the IV.

I remember more of that morning than I should have to, but the main gist of it was massive pain. I remember my parents begging the doctors for more Demerol to get me through the trip, and finally being parceled out some measly amount I was only allowed every couple of hours. My mother rode in the ambulance with me, and I can clearly remember her overwhelmed eyes, the look of a deer caught in headlights, the look of paralysis from fear as I agonized through every bump of the four hour ride. I felt like the princess lying on a bed of spiked peas in a carriage being pulled by a pair of raging bulls.

Finally we arrive at Moss and begin the lengthy check in process of xrays, scans, and whatever the hell else they deemed necessary. I don't remember all of it, but I do remember vomiting during the ultrasound and the guy giving me this teeny-tiny kidney bowl which immediately overflowed and promptly spilled on his shoes. Thankfully a nurse swooped in with a plastic bin the size of a small sink and I became self-contained. Later I am taken to my room and meet my physiatrist, who for having a spinal injury himself was shockingly? brusque in his examination of mine.

Dr. Schwartzie wears bow ties and tweed, and has some sort of spinal injury that makes walking difficult. He gets around primarily on a scooter and has a cadre of residents at his beck and callgirl, and shit does he let them know who their big daddy is at all times. There was something very strangelovian about the whole situation, but all I could do was worry at the time. someone (med student) had taped a sign of Darth Vadar to the back of his scooter and it was awhile before I could see the humor of it. Don't feel too much pity for this guy either, he's a board-certified genius making close to "2 bills" with a wife so trophy hot no one ever believes they're married (in his paraphrased words: "she looks like the blond perfection that comes with picture frames"). Guy is a stone-cold pimp.

So I've got this guy barking orders and examining me for my "official" level of injury. You might imagine electrodes being glued on my legs or something akin to the matrix scene with all the needles and you would be dead wrong. He used a pen. A fucking ballpoint pen was deciding my fate, and it being a montblanc didn't make me feel any better.

The test goes like this: Do you feel that? What about now? and repeat starting from my toes and all the way up until he reaches my sternum.

The "test" showed I was a T (for thoracic) 4/5 (the level of the disc where my injury begins, I have half of T-four and none at T-five) complete/Asia A (no sensation, no movement). Before darth leaves, he writes my scripts for the ongoing (fetanyl patch) and breakthrough (oxycondone tabs) pain.

Therapists come and go along with all the other members of my new Team, and everyone is so! excited! to meet me!! Therapists are among the perkiest members of the human race, and, well, I'm not much of a perkster and I certainly wasn't during that time. Sometime later the welcome wagon is over and my parents have gone home, and suddenly I find myself not overwhelmed by pain. I remember this moment so clearly, maybe because it was the first time in at least a week that life felt tolerable, but life slowed down a bit from a second by second existence of nonstop pain, and I rang the bell and asked for something to eat after a week of near-fasting.

Otis Brickhouse, the greatest of night nurses' aides, brought me pack after pack of Lorna Doone's that night. I absolutely cannot write or even think about him without crying, he was my savior in so many ways during that time. Otis, an older black man who had started out as an army medic and now padded the dark hallways sunday through thursday tending to patients to all variety of spinal cord injuries and strokes. Before and after each shift I'd catch him in his signature fedora and leather "Shaft" jacket looking every letter of his glorious name. He took care of me during the darkest, most hideous moments of my life, the moments that still hold a degree of shame in me and probably always will, moments I don't know if I can ever bring myself to share because very, very few have any frame of reference to what must be endured in such a situation. Aides get the worst work around and it's basically a low paying job, so it's no surprise that quality of care suffers and patients are often regarded with outright resentment. It's a brutal place where compassion can be a rare commodity, and a spinal cord patient with an injury as severe as mine is met with a lot of hostility for the endless care needs it entails in the acute stage. Otis was a beacon of humanity in a sea of disdain.

And so the saga starts, but it will end here for tonight before I fall into the emotional abyss that is this part of my life.

noreply@blogger.com (sarah may scott) — Thu, 19 Feb 2009 14:17:00 +0000

Many moons ago I wrote a post about the movie "Quid Pro Quo" which had managed to create quite a buzz because of its' depiction of apotemnophilism, ie those who desire to be disabled and often pretend to be as well. I gave an opinion based on the premise that persons with disabilities are rarely perceived or portrayed as sexual, in life as well and in Hollywood, respectively. Then I saw the movie.

What a fucking disaster it is, and what a huge affront to people with disabilities. There is sex in the movie, but it's so wrapped up in the "magic shoes" and "ginger jack" nonsense that who cares anyway? By the end of the movie, our protagonist, the legitimate wheelchair user, ends up being a pretender all along, which actually might explain the real mystery which is why a complete paraplegic (ie, no movement and no sensation below injury) would be doing with an erection in the first place. The only people getting fucked in connection with this movie are the disabled by a exploitative Hollywood screenwriter desperate for controversy to market a film that should have never gotten the attention it did. It's a piece of shit.

This morning I came across a link for David Steinberg's "Erotic by Nature" photographic portraits featuring "disabled people having sex". Wheelchair Dancer called his work "fantastic" but grips about why it must be qualified (think Obama constantly being called "articulate") and goes on to say "what would it mean to fetishize disability in a disability positive and sex positive way?". I'll forgive the positive-positive nonsense, but I do wonder about implied logic of a proper way to objectify something in the first place. A politically correct sexual fetish? I don't think so.

But back to Steinberg's project, which if you haven't figured out by now is something you will likely want to look at in the privacy of your own home. Steinburg started photographing disabled people having sex in 2000 and by his website the book should be out by now. I don't know much about this guy, but he comes across as very interested in social justice and disparity, and this project is his attempt to put "photographic images in public circulation that show disabled people being sexy, let alone sexual, in any kind of genuine, non-fetishized way." Interesting premise, although as an artist's statement I find it lacking in personal or society meaning.

Why exactly does he feel strongly about filling this presumed void, and why is he the man for the job? Is he disabled himself or have a close relationship with someone who is? These are questions I feel need to be answers if this work is to be taken seriously.

Looking at the photos themselves, I was, to be completely honest, disgusted. Not by the pornographic content or the models themselves, but by the utter lack of honesty or feeling the photos evoke. As a whole they aren't much more than amateur porno with a let-me-show-you-how-dirty-disabled-people-are-too kinda vibe. Disabled people fist! dildos! kink! corsets! And many have partners who leave the impression that it's not their first time in front of a camera. It may not be outright fetishistic, but it is about as exploitative as it gets.

If you want to see a movie that shows disabled people fucking, see Crash. On the surface is a movie about people who find car crashes erotic, but ultimately I see it as a film about people who have redefined sexuality to suit their new post-crash realities. It never gets paired with disabilities oddly, but disability is everywhere in this movie and they have a lot of hot hot sex without making a political statement out of it. It also deals with Wannabes, but I don't want to give anymore away. The point is, it can be done and be done quite well, even if it is rarely the case.

manhattan me

noreply@blogger.com (sarah may scott) — Fri, 30 Jan 2009 22:59:00 +0000

This picture was actually harder for me to post than this. I put my old life in a box and buried it deep in order to survive..

martha stewart's office at Starrett-Lehigh, taken in 2003

the story of the scar

noreply@blogger.com (sarah may scott) — Tue, 27 Jan 2009 21:11:00 +0000

I was living in Manhattan for a little over four years when I moved to Philadelphia in 2004. Officially I moved there to take advantage of a job opportunity, unofficially NYC had worn on me by then and it was time to go. Emotionally I needed a fresh start in a more forgiving environment with a greater margin for error.

Philadelphia turned out to be exactly the answer I was looking for. I had left behind a relationship that had never worked and a lifestyle I was afraid to admit didn't work for me either. Returning to Pennsylvania felt in some ways a defeat but I didn't care anymore. I was happy to have the opportunity to start putting my life together in a manner more suitable instead treading water minute by minute just to stay alive.

I did a lot of emotional work in NYC but in Philly I finally had a chance to live it, and I did. I started letting go of all the burdens and crutches I had forced myself to keep carrying for years and reveled in what it felt like to feel free again. As a treat to myself, something I had coveted for many years, I bought a road bike and decided to take up racing.

While at PSU in the late 90's I played on the varsity field hockey team and even had a scholarship to boot. PSU was and is one of the top teams in the country, coached by the legendary Char Morrett. It had been my dream since 7th grade to play for her and I spent those six years training for the opportunity that finally came to fruition. The program was tough but I loved playing and displayed the blue & white the way a peacock shows his feathers. Competition is fun, but I always loved the process of training, the incremental steps that lead up to completing a goal. Achieving has always been my drug of choice.

When I decided to start racing, I applied the same gusto I had with hockey. I reconnected with other cyclists, joined a team, went on group rides, and hired a coach. My first year of races were nothing to brag about, but I had been in that position before and knew if I kept hacking away I would find a way to make it work. But it didn't quite work out that way for obvious reasons.

On July 29th 2005 I was racing in the Tour de 'Toona in Altoona, PA, four hours from Philly and one hour from my hometown of State College, PA. I drove up the day before with my friend and fellow rider, Woody, to pick up our race packets and scope out the course. Afterwards we drove to my dad's house where we planned to commute from for the next three days of racing. After that night, it would be another four months before I would return there.

Race day arrives and we make the drive to a tiny town outside of Altoona where we'll race through the farmland. I've pin my number onto my jersey and then we're off and racing. 3/4 through the race we go up a long climb which isn't my strong point but I keep fighting knowing that the flat stretch to the end is where I can make up for it, sprinting being my strength.

I struggle up to the summit and begin the mile-long downhill that ends with a 90-degree turn that takes you back to town. Only I don't make the turn, and the world goes black for how long I have no idea. I don't remember if the EMT woke me up, or I just came too on my own, but I remember looking down at my thighs and thinking about dead meat. Big hunks of dead meat.

It made sense for a long time actually, because my legs still felt like I was on my bike. My legs in my mind, were straight out in front of me riding an invisible bike, like I was piloting Wonder Woman's jet. Then the pain started rippling out from between my shoulder blades and I snap back and forth between the phantom limbs and the horrible pain that keeps getting worse and worse minute by minute.

The helicopter arrives and they whisk me away to the nearest trauma center. I don't remember crying but I remember my eyes being very wet, I was willing myself to keep it together for what reason I have no idea. In Triage they give me morphine and don't talk to me much, and I know by their faces that it's really, really bad.

The next however many hours are a haze of MRIs, CT Scans, xrays, nerve conduction tests while the pastuar (sp) desperately tries to contact someone, anyone to tell them what has happened. The nightmare of being without a cell phone is that you don't know anyone's number anymore. I only knew one, my ex-boyfriend because I'd repeatedly erased and re added his number during out hot and cold relationship, but it doesn't matter because he's five hours away and has no way to contact my family. I find out later that Woody couldn't find out what happened to me or where I went because of privacy issues, and only shows up later after using a secret service connection to track me down.

Those hours that I was alone in that hospital will stay with me till the day I die. Hours tick by and no one tells me what is wrong, they just file in and out doing whatever they have to do and I lie there with tears in my eyes and terror in my mind. I can no longer feel below my sternum, and I need someone to hold my hands so I can feel reassured I'm still there, that the rest of my body isn't still back on that cornfield with my legs still trying to finish the race. The morphine hasn't taken away the phantom feeling and it terrorizes me and threatens to make me insane every second.

But people do arrive, and the next day I have my first spinal fusion surgery where they seek to stabilize all the shattered bone with titanium rods. My biggest relief when I wake up is the phantom feeling is gone, but now the pain is even worse. The pain after is like none I've ever known and I find myself woefully lacking in proper pain management until I'm taken four hours by ambulance to the rehab center back in Philly.

The longest moments in your life will eventually becomes seconds, minutes, hours, days, weeks, and months, and suddenly you realize in all the carnage you're still alive. Under the surface you may feel like you're drowning, but no one really notices after awhile, it's just white noise. That's how my life went for the next nine months, until I find out I have to have a revision surgery because I've developed the deformity the original surgery was supposed to prevent.

I was devastated by the news but it happened and two years later I'm handling the possibility of another spinal surgery with relative ease because I'm used to lemons by now, lots and lots of lemons and not a whole lot of lemonade. I have great days, I have terrible days. I keep trying to move on in some fashion and I keep getting slapped back because the world isn't meant for me anymore. But somehow I manage to still be ok, to smile, to laugh, and even to love. There are vestiges of the old me, but anymore it's just glimpses here and there.

The new me is paralyzed from the bottom of my sternum down, 100% reliant on a wheelchair for mobility. I'm no longer a size four with marilyn curves etched on taut muscles. I no longer wear heels, and I've had to give away most of my clothes from my old life. Some I'm still holding onto, but slowly and surely they continue to be discarded as I keep loosening my grip on the past.

That's the story behind scar which I wasn't quite ready to post when I took the picture. The picture to me said it all, the broken scarred body that still manages to look beautiful, but I realize it probably means something very different to most. But that's how I see the photo, the scar, and me, broken but still beautiful in unexpected ways.

the saga ends

noreply@blogger.com (sarah may scott) — Thu, 15 Jan 2009 20:02:00 +0000

This is not my week.

Today I withdrew from classes. I'm sad, I'm bummed, I'm sick and tired (of being sick and tired) of the setbacks. I feel as though each time I make plans to move forward in some manner, I end up having to abandon ship for a whole slew of reasons beyond my control. I feel powerless to help myself sometimes.

There is first the issue of access and ADA compliance that extends beyond just the parking spot. My last experience of taking a class at the same school was full of less than ideal circumstances that at the time I was too fresh in my recovery to know to speak up. The only one I did was the fact that there was no bathroom for me to use with any degree of privacy. It was humiliating to say the least, but I bitched loud enough and it was changed quickly. I knew of some potential issues I would have to contend with, but by now I know enough that if I need to I can and will petition to have a location change, or otherwise advocate for what I need. The difficulty all along has been learning what it is I need to know to assimilate into my new world. If I don't know something exists, how can I advocate for it?

This also goes for medical issues. I've learned how to be a pretty damn good advocate for myself, but the trick still lies in knowing what to advocate for. When I was dealing with severe spasticity, I didn't really know about the baclofen pump or that I was an ideal candidate, I had simply gotten used to being misreable because no one said it could be otherwise. Part of it is certainly because I'm in a rural area, part of it is the learning curve of traumatic paraplegia, other parts are too complicated to get into here.

The other reason besides access for me withdrawing is that I found out yesterday I may have developed something called Charcot Spine, which actually accounts for a lot of discomfort I've experienced with no explanation for quite some time. I've had significant posture issues develop, where I now list to my right side causing me to put extra strain on my right shoulder, considerable balance issues, pain, etc. etc. From what I've gathered, which isn't much yet, surgery appears to be a likely intervention. I hope there is something that can reverse a lot of the damage and make my life more comfortable and independent, surgery sounds great if it could do that.

Though after my last surgery, which nearly killed me emotionally, I can't say I'm not scared. I've developed some phobias since my injury, an oversensitivity to anyone touching anywhere near my back (like the ear guy in "what about mary?"). The other big one is being put under, as I woke up in restraints and a tube in my throat after the fusion sugery. It was like waking up in your very own personal horror movie, where you're in tremendous pain but can't communicate to anyone that you need more pain meds because you can't speak and your arms are tied down. I used to have nightmares about it, though thankfully it's been a long time. The other big difficulty with that surgery was being told I would recover in two weeks by one person, and two years by another. Two years ended up being more accurate.

The day I found out about that surgery, I was one weekend away from starting a job (about nine months after my original injury). I was utterly elated to be getting back to work, and had hopes that this surgery was just going to be a delay to reaching that goal. The surgery itself was long, about 12 hours, and they kept me in the ICU for another two weeks until I could go home. At home, I was in uncontrolled pain and a near constant emotional toxic mess to myself and everyone around me. I don't think I could mentally survive another round of that. It was first in what has become a long line of near misses that keep piling up every time I try to move forward.

For now there's not much I can do but shop around for online classes and wait to see what the surgeon says when I see him next month. I've been sent back to the end of line, waiting again for my health to come together so I can move on with my life. Someday I can only hope my world won't be a house of cards in the middle of kansas, but that's how it feels right now. I'm not totally despondent (yet), just really blue.

scar - one more time

noreply@blogger.com (sarah may scott) — Mon, 12 Jan 2009 22:26:00 +0000

scar
Originally uploaded by bunnyandcoco

some technical difficulties the first time linking to the large version, so here it finally is, Large and On Black

scar

noreply@blogger.com (sarah may scott) — Thu, 08 Jan 2009 22:02:00 +0000

Scar