manhattan me

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

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.

auntie sarah

I became an auntie in late december, right before Christmas. This is the darling baby jasmine at two tender weeks old.

She is beautiful and I wish she were all mine.

the saga ends

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.

the god damn plane has crashed into the mountain

nothing is fucked here dude, nothing is fucked, they're just a bunch of fucking amateurs...Walter Sobchak

Lotta strings today that I didn't plan on.

Whenever I have somewhere to be early, I can count on my body betraying me in one of an infinite number of ways. You could set a clock to it. Today I had my first day of classes and had to add frantic to my cadre of anxiety as I got off to a late start. But I refused to get dragged down, no way was I going to let anything get in the way of what I wanted to accomplish.

I've acquired a lot of armor in the last three + years of paraplegia. The smallest setback or humiliation used to send me into days-long tailspins of hiding and crying. Lots of woe-is-to-me kinda stuff, all because I couldn't accept the person who had taken my place in the world. It's a helluva lesson to learn, to one day be out in the world as a object of lust and admiration to the next one of pity and disgust. As things progressed in my recovery, medical issues being resolved, finding coco, etc etc, I started little by little to tune out all the evil voices into a haze of white noise. Kevlar became my second skin.

Today there was hollow point ammo that could not be stopped. A fucking parking spot threw a wrench in my whole works and shit came screeching to a halt.

The building I have both of my classes in at a small state university in the middle of redneck heaven (where the men are men and the women are too, PA) has three entrances and two parking areas. Only one of either of these is wheelchair accessible, and sits halfway up a rather steep hill. Most of the sidewalks aren't shoveled at all, and the ones that are did not have wheelchairs in mind. So naturally the crucial parking spot is taken by an SUV, which tells me right away that whoever is parking there is not a wheelchair user. So I wait. Drive around, wait some more, etc etc. I look all around for other options, illegal ones included, but there is literally nothing viable. So I give up, and figure I'll head over to the parking office to get my sticker.

Wrong again. There are two 10 min. spaces, but w/o any extra room I won't be able to set my wheelchair next to my car. There is a handicap space, but half of it has been used to push snow onto. At this point I throw in the towel and drive the 45 minutes back home.

I'm not giving up that easily though, because these classes mean too much to me and my future. One of them is photography, which along with writing has been my salvation through these past few years. I don't "want" to take these classes, I NEED to take these classes. I call campus security and explain the situation, pleading my case for the parking spot . He told me the SUV is always there, but he's going to do some investigating to see if perhaps this person could park somewhere else (the back of the building also has a lot but with a stepped entrance). He will meet me in the parking lot next time to deal with the sticker as well. All good things, all without me mentioning the ADA that has been law since 1990 but makes no difference if you are not willing (and able) to go to court. For most practical purposes, the ADA is not much more than "bush-league psyche-out stuff."

Still, the problem is potentially solved, now that I know what I'm dealing with but it made me cry anyway. My defeated self crawled under the covers for an extended pity-party which brought me full-circle to my once weak and fragile self that went to pieces if a feather fell on me. I wonder if my "independence" is really a sham, all smoke and mirrors. Today for sure I'm not Dorothy kickin' ass in ruby slippers - I'm Oz frantically pulling on strings until it all inevitably goes to shit. I wonder a lot how much longer I can keep this up.

But tomorrow is another day, and Thursday will be too. I'll strap on some extra kevlar and try to make shit happen again, even if I have to cry afterwards.

scar - one more time

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

Scar

profile

profile
Originally uploaded by bunnyandcoco