Gone for so long!

I've been gone awhile, I know.  Not the ideal way to find, get, keep and audience.  My head has been swimming for... well, I guess really I don't know when it wasn't, but this time's different. This time, there is intent, confidence, strength.  And self-empowerment, I think I'm finding that, too, learning how to do it in healthy and honest ways.  Self-empowerment will never come from self-destruction, even when it feels like it -- that's something else, I think.  In the simplest terms, a lie.

So here's been my struggle with this blog. To start with, I thought  it would give me something I could always be able to write about.  I wanted to do this as a writer, who happened to have survived something horrific, not to be categorized as a part of the disabled writer's movement. And that has kept me from writing in my blog.  I really wanted to use this as a platform for being a writer, everything I read about getting an audience stressed the topic.... it has to have some sort of demographic.  I figured being internally decapitated would get a bit of attention.  I've been regularly attending therapy lately and am using EMDR as well as talk therapy, and it's amazing.  My emotional scar tissue is shedding away, I'm learning to stop suppressing myself to accommodate others, including myself.  Especially myself. My self.  And I'm learning what I've been doing in my head and how I've been interpreting feelings (about myself and others) and relationships and what's important.... I'm learning it's time to speak my truths, what my truth really is and what I should be doing with them, how to understand them, use them to my advantage, even the sad ones.   

I spent a week at Naropa in Boulder, a school I've been dreaming of for 15 years. I finally made it, even for just a week.  That week changed my life, changed me, changed my writing and my thoughts and processes and goals and ambitions and re birthed that passion for writing poetry that's been gone for so many years.  But I don't know if I'm ready to share those intensities with you yet, if I'm ready to be that vulnerable for you yet. Maybe some day...

So, here I sit in this whirlwind of words and dreams and a little bit of vomit and spilled ashtrays and wonder what it is I should write about, what I should share with you and how.

I think this is all I need to share right now.  I hope that I can share at least once a week.  I won't guarantee that it'll always be about something medical, or that it'll be grammatically accurate or even interesting.  I definitely won't promisie that I'll go back and proofread or edit before I post because I probably wonn't. As part of my using this platform as a writer, this, for me, needs to be more of a journal --- edited in my head before I can type it in a bright white box in a blogging app. 

None the matter, I am starting anew as of this post, and we will see together (me and like the 2 of you that read here) where this blog takes me....

as always, please feel free to post comments and questions, only if they are honest and respectful.  I will only edit disrespectful comments

  

"healthcare" in TX is criminal....

Out of respect for the patient involved and his family, I'm going to keep things anonymous for now. This is not only to help maintain his dignity, but also to ensure he doesn't start getting worse care or even kicked out of the facility he's in. So, I'll call the patient, Bert. And, Bert lives in a Dallas suburb, is a senior citizen, and has been fighting cancer for some time now. This is his second bout with cancer, but it is a different kind -- apparently once you've beaten cancer once, you're more likely to "catch" it again, even if the original body part/organ is no longer there.
Following this section, you can read the basics of this story, but I want to make sure you don't stop reading before you hear what kind of hell Dallas, TX is for anyone with an illness or disability. This is the thing -- this isn't my first observation of Dallas healthcare being incompetent, uncaring, and inhumane. And none of those three words are exaggerations by any means.... So, Bert was released form the hospital into the care of a rehabilitation hospital. His floor seems to be filled with transplant patients, transplants of some sort or another. This place is as fabulous as a state run nursing home (something else I know enough about), and there's nothing fabulous about that. In fact, we walked by a woman begging for help, quietly, but begging. We saw several nurses, aides, whatever walk past her and ignore her, pleading to be immediately taken to the bathroom. We had to ask someone to help her.
Bert was dropped off the other day. He didn't see a nurse, admissions person, dr, or any other employee of the "care" facility for over 2 hours. He has specific dietary needs and it took them over 24 hours to get the dietician to him. He didn't see the doctor for over 24 hours after being admitted. I watched a nurse flip her hair and take her sweet little time, as Bert was begging for help to the bathroom. A blood tech came in to take blood, we informed him Bert had a port, and he said that a nurse had to do it, walked out, never came back and we never saw a nurse to pull blood before we left. Today, his catheter got pulled or something during his physical therapy (PT), started bleeding and leaking, and 3 hours later it hasn't been dealt with.
This is sick. I've been in the hospital several times, had 20+ surgeries, and been in several hospitals in 2 states. I got nurses fired in Lincoln for mistreating me. Now, if these people are treating patients that can speak up this way, how the hell are they treating the people that can't communicate? Is this how they would care for their mother, father or child? I think not.
In fact, one of my experiences in Dallas: the same ortho that saw Bert in the hospital saw me a couple years ago, after I found out I needed another fusion. He left me waiting for 3 hours past my appointment time, walked in, looked at me and told me that he doesn't do that surgery. Two days later, his nurse called to schedule it. I said, "Dr. Guess told me he doesn't do that surgery!" She said, "oh, he does it all the time, what do you mean?"
So, in Denver, CO the squeaky wheel gets the grease, in Dallas, the patients, scared, mistreated, and sick, are treated even worse if they alert anyone to the fact that the entire facility should be sued for malpractice....
OK, so, here are the basics of this story. Bert was diagnosed with cancer by chance -- he bent over to pick something up and had severe pain in his chest. Luckily he was already at the hospital, as a visitor, and the nurse brought him a wheelchair and they took him to the ER. Over the course of the next few days, things were a mess -- first, the ER doc diagnosed cancer. Then, the orthopedic doc said, no way, it's not cancer. Then the oncologist said, it's definitely cancer. Then, the ortho came in the room and argued with the Onco about whether or not it was cancer -yes, in front of us. Eventually, I don't know how many days later, the ortho backed down and the Onco won, it was cancer. Between the arguing doctors and the battling diagnoses, we had little time to think and even less time to act -- this was serious. We agreed, with the doctors in the hospital, that Bert would not be leaving the hospital (a famous hospital in Dallas which I'd like to refrain from naming at this time) until we a) had a firm and definite diagnosis and 2) had a solid, set-in-stone treatment plan. We had all those things before we left the hospital. We knew treatment would start with some chemo and/or radiation at a specific cancer clinic, and that after some chemo they would grow stem cells for him, from him, and then implant them. That step would involve a 2-4 weeks hospital stay, some time at a rehab hospital, then homebound for at least 6 months. Then, the medical professionals started changing appointments, claiming they had other patients worse off that needed to get in first.... When we left the hospital in July, the stem cell implant was going to be in January. He just had them done the beginning of April.
Now, let's talk

It's been so long since I've blogged... not because I don't have anything to write about, quite the opposite. Actually, I've been having a bit of a struggle concerning my blog. I'm not quite sure that I reached a solid decision. I'm really struggling with how personal I want to get, how much I want to share, and what is inappropriate to share. I mean, some things have legal implications. Some, some things are just humiliating. Some things may be news to even my closest of friends and family, and some may be socially taboo. Some things may sound passive aggressive, and some things are just me venting, like a normal person, just venting.
There have been a lot of topics in the last month that I really wish I'd have written about here. My only real reason for not is, as I said above, I'm not sure how well I want you to know me, and I'm not sure how well I want to know me. But that's the path I'm on right now, learning about me again. I'm a much different person than I was before I lost my head. But not different enough, and not happy enough. Ultimately, not me enough. I'm rid of the hardcore and vicious vices of the days past, but I still hold on to some of those behaviors that come along for the ride. I don't care if you know what I'm talking about or not, I know.
I guess since it's been awhile since I've posted, I'll write something nice and positive. Actually, I really need to write about the following since it's still just a few days ago -- a week I guess.
So, I live in Denver. I am a CO resident, and I have the legal documentation allowing me to walk in to a specialty store, browse the flavors of the day, and walk out with up to 2 ounces of medical marijuana or candies/baked goods/other edible foods made with cannibis infused butter/oil. We call it the red card, a paycheck sized piece of paper with red ink, stating your name and other pertinent information necessary to legally purchase high grade marijuana grown to help people more easily handle the symptoms of many, many illnesses, diseases, and their treatments. I'm not using this post as a platform, however, for legalizing marijuana; I live in a state where it's already been accepted as medical treatment by the voters. For the record, I voted no last year on legalizing marijuana for all adults over 21.
No, the reason I'm writing this is because of the doctor that writes my annual prescription for my red card, Dr. Alan Shackelford.
Every dispensary owner in CO should know who he is. He's assisted in writing the laws. He's fought diligently for patient rights and medical regulation for patients. He's published, he's acted, and he saved my life.
My injury happened during a car accident outside of Lincoln, NE. I was in the hospital in Lincoln for about 5 weeks, at which point they released me and I came home to Denver with my mom. Though the hospital staff had made the doctor appointments required before my discharge, but they forgot the alert them to the fact that I had no insurance and no money. I was literally turned away from several doctors' offices, in a wheelchair, a halo, a CAM boot and with crossed eyes, because I couldn't pay. This was really the reason I had to hire an attorney -- I couldn't get medical care. I'd have to go to Denver General clinic and wait for hours in pain for pain medication because the hospital only gave me 3 days worth when I was released and no doctor in denver would let me thru the doors! So, the first thing my attorneys did for me was find me a doctor who would care for me on a lien -- when I received money from the insurance company the monies owed to them would be paid out before I was.
My first couple appointments I had a pretty cool, very capable doctor who recommended medical marijuana. This was before we had dispensaries, and I hated the idea of being a pothead so I said no fuckin' way!
After my first few visits (I think I went more than once a week back then), I walked in to a new doctor. I was pissed. I had finally learned to trust the other dr and he disappeared without warning or reason, but now, I had to learn to trust Dr. Shackelford.
I quickly trusted him and had great faith in all he said. He was smart, intuitive, and non-judgmental. And, he was cool! He listened, he cared, he inspired. He saw many, many landmarks in my recovery, and is personally responsible for my mental state and my growth back to being a pseudo-functional person. Dr. Shackelford made great recommendations, but I don't think he ever suggested #MMJ (medical marijuana). What he did do, is he saved my life. Not from some near fatal injury or chronic pain, which of course his treatments and RXs helped with. But he really saved me from myself and my own worst enemy, my thoughts. He was kind, not cold like most of the other doctors I had been treated by at that point. (We're talking, Dr. Shack was treating me starting around the month of April, 2007, just 3 months after the accident and the hospital and the 13 surgeries, so he saw me at my post-ICU worst.) My appearance didn't phase him, not like it did my friends, most of whom couldn't handle seeing me after the first time, not until I was "whole" again, or at least looked closer to the pre-accident Shannon. And everyone, dr's and not, was easily taken aback by my appearance. I mean, at all times, one eye was almost completely white, I had a cage on my head and walked like the Bride of Frankenstein. But Shack just looked at me the same way he does today (or did last week when I saw him!). He was relentless, researching and brainstorming anything and everything that may help me become close to "normal" again -- healed! He was amazing, he was always so encouraging, often spending so much time consoling and helping me that I would leave him several patients behind for the rest of the day, but he'd do it again the next appointment. His only concern, when I was in his exam room, was me. Not just my pain level or if I was constipated, but how I was feeling -- was I sad, what did I think about, was my family being supportive and was there anything he could do for them, what were my fears, what made me cry, what made me laugh, what was important to ME, not as a case # but a fellow human being.
Since then, I've found that bedside manner is the thing missing from the abilities of most doctors now. And not just with me, but my in-laws all have medical issues with many dr's involved and most of them are big ol' DBs!
No Shack -- he's the raddest!
So, when I finally decided that I didn't want to be on so many narcotics --that I didn't like drooling on myself all day and falling asleep in the middle of sentences or having NO memory of anything that happened because I was so loaded and lethargic from all the pain meds -- I found that Dr. Shackelford had left the lien practice he was employed at and opened his own practice, writing RXs for medical marijuana. It's pretty easy to get your red card. I believe that anxiety is an acceptable condition, along with insomnia, chronic pain, depression, cancer, nausea, IBS, migraines, HIV, AIDS.... I mean, it's not hard, it's a cure-all! (Let me just say here, that there are claims from more than one dr that when certain cancer cells - including brain, breast, leukemia, and prostate -- are injected with THC they die.... yes, pot cures cancer. Don't yell at me, your God put it here for our use, and you can use marijuana for just about anything, from medication to making paper, cloth, lotion, food, fuel.... and the big three?
1. TO SERIOUSLY REDUCE THE NATIONAL DEBT, AND
2. ALLOW LAW ENFORCEMENT AND PRISON SYSTEMS TO FOCUS real CRIMINALS (YOU KNOW, LIKE CRACK DEALERS, MURDERERS, RAPISTS AND PEDOPHILES) INSTEAD OF SOMEONE CARRYING AROUND A GRAM OF WEED OR GROWING PLANTS TO HELP CANCER PATIENTS, AND
3. CUT DOWN ON CARTEL-U.S. INVOLVEMENT (ESPECIALLY THE CORRUPT POLITICIANS AND LAW ENFORCEMENT CONSPIRING WITH THE BASTARDS) AND KEEP THEIR GARBAGE OUT OF OUR COUNTRY
and I digress....
my real point of this post is about this amazing doctor. I've dealt with so many asshole, egotistical and uncaring doctors who treat me like a cardboard cutout. So, when I find a doctor that super rad AND has been instrumental in getting me to where I am today, it's a big deal. Then, to lost that doctor is a big deal. But, to find him again and have the opportunity to see him at least once a year? Dr. Shackelford is so good, that my annual 30 minute appointment to catch up becomes more of an inspirational talk than anything. I'm so stoked to have this guy in my corner
For anyone interested in talking to a doctor to see if this treatment is right for you, Dr Shackelford is a real doctor, not just a lazy guy with lots of school and a license too lazy to do anything other than fill out an application and sign their name. A lot of these doctors are legitimate, but for the true patient you need a doctor that is really behind MMJ and it's medical potential, one that is so knowledgable about this area of the medical field that he's consulted many, many people in the MMJ industry, including Montel Williams. If you think that MMJ may help you or someone you know, please, please call Dr Shackelford for true medical assistance and the appropriate knowledge about MMJ for your specific condition. check him out at http://www.amarimed.com/
this is the place to go for any info you are looking for regarding MMJ, and if you are totally against it, don't you dare comment here without researching first. I'm not writing this to promote marijuana by any means. If it didn't help me with: chronic pain, anxiety, PTSD, depression, motivation, headaches, nerve pain, muscle spasms, insomnia, I wouldn't use it. I quit smoking pot in 1994. I started medicating with marijuana, edibles, and concentrates 4 years ago, and went from 17 different daily medications to 5 total. I guess this post serves more than my original purpose. Actually, I don't think I achieved my original goal for this post and it totally turned into some article for NORML, Culture Magazine, or The Rooster. Be what it may, I wasn't looking for a debate but I'm ready if you got one comin'!

asked and answered, a poem

one of my dedicated followers has been asking me to post some of my poetry.... this is a first draft, and not one of my best, but it is one of the poems that I've written that falls into the newly named genre of disability poetry.  It's always been really hard for me to go back and edit my poetry, for me poetry is my emotion, even if my poems lack feeling words.  In my head I always think that I'll never find that exact emotion over that exact stimuli again, so editing to me, in the past, has seemed superficial and created a disconnect from the original words and the edit.  I've learned that this isn't true, but I still have not gone back to edit this piece... maybe it'll happen as I type it here for you, but maybe  not.  I, just like all art, am a work in progress.  Before I started this blog, I had daily ideas for topics and what I wanted to say. Since I started this blog, I've gotten more into my writing -- spending hours a day working as a writer, either writing, researching or reading.  Since I have started a Twitter account for myself, my writer-self, I keep thinking that I want to start a blog that is just my writing... so many fears, though... how much easier it is for someone to steal my work, my words, my feelings?  I am hoping that I get to workshop with Thurston Moore (founder of Sonic Youth, y'all!!!!!!!!!!!!!!!!) at The Jack Kerouac School of Disembodied Poetics at the Naropa Institute in Boulder this summer -- I missed him last year, and I can't risk missing him forever at Naropa as I did Allen Ginsberg (a founder of the school and one of my first favorite poets), not finding out about this school until Mr. Ginsberg sadly passed away.  Anyway, I think I'm stalling because I really may think this poem is a piece of shit, and I'm not saying that to get compliments.... Please read my "editorial" after the poem regarding comments.  Without further procrastination, I present:
                       
FUSED


a brutal overload of screws and rods
in such beautiful colors
you'd never know
from far away
these pieces had shred marks,
until you see them up close
and recognize remnants
of skull and bone
   maybe even skin and other soft tissue
   or dried up fluids
   in hidden places the autoclave missed

they held a girl's head on
straight but crooked
for the last six fucking years --
these "pretty pieces"
of metal
caused sickening pain and
dreams of death,

and now
I hold those loose screws
in my hands,
new hardware resides in my neck
my skull,
and the commercial on TV says
it may cause trouble swallowing or nerve damage
but i had all that before,
after the first time they put Humpty Dumpty
back together again


***Ok,  so.... as far as comments on this piece:  First of all, it's a totally different piece than what I was typing from; this isn't the end, it's just where I had to stop right now to figure out where to go from here; if you'd like to leave a comment, workshop style (that is, critiquing my poem), please be constructive, and realize this is a work in progress; this piece is a total mess, but it is the only thing I have at the moment that relates to my blog (that I can find), also please be nice, I was completely whacked on morphine at the time I began this piece and I'm working on it....
I'll post a good one in a different post

Life is a game and I'm finally ready to play...

My mantra for the week has been: I'm not fuckin' around anymore!
I have been out of the house every day for 3 weeks, I've been on time for appointments and plans, I've gotten on the treadmill, I've been doing my physical therapy exercises, I've been talking to people, reading emphatically, writing, trying to get organized.... In the words of Penny Lane, "It's all happening..."
I've been a procrastinator, lazy, gluttonous. I've been self-righteous and self-hating (don't they always go together?).... 3 weeks ago, my normal day involved dragging my ass out of bed around 12-2 and pretty much laying around watching tv all day. Yes, I admit that it's nice to not have to go to work but it also allows for a lot of waste -- body and mind. I'll never be strong or consistent enough in my body to be able to have a "normal" job, and by that I mean this: I don't know how I will wake up feeling from day to day - I could be ok, or maybe I can't get out of bed or walk. Somedays I can't breathe as well, somedays I almost pass out in the shower from lack of oxygen. I can't promise an employer that I will be able to sit, stand, lift, or even speak. I also can't promise them that I will be at work. My issue isn't not being able to find a job, I truly can't work in the traditional sense of the word. The real issue is what happens when I don't have anywhere I have to be, really no one to answer to...
The last couple weeks have really taught me that I am responsible for everything. If I'm not happy, it's my responsibility to get happy. I can put in place certain rules for myself, wake up by x:xx, shower, be on time, whatever, but NO ONE holds me to any of it but me. Everyone in my life is so used to me missing appointments, bailing out of plans, sleeping all day, avoiding society because it hurts, etc.
Of course it hurts, it's life, and "life is trauma." (Jeanette Winterson)

Catharsis

In a cathartic moment immediately after finishing Why Be Happy When You Can Be Normal, by Jeanette Winterson, I realized today that there has been one consistent element missing from my writing, especially about the accident.  Except in my poetry.... there I can use imagery to bring out the feelings, the torment, the anguish, even the happiness and comfort. I had many, many self-realizations and moments of complete emotional clarity, simultaneously not feeling alone, - though I was with what some people would call just a book (there's really no such thing as "just a book") - while reading this emotional masterpiece that reads like the smoothest poetry and embedded with emotional horror and self-understanding.  JW made me see that the thing missing, and I'm sure you'll agree if you go back and read/reread previous entries, is showing my reader the emotion.  Not just saying, it was scary or I was sad, but reinventing that emotion to bring you as close to  me at that moment and humanly possible without physically being there.
I also realized that the past is the present is the future and that you can move any of those nouns to change the progression of time and the sentiment remains the same.  I've learned that we don't have a right to happiness, we have the right to the pursuit of happiness and these are by no means even close to meaning the same thing.  We believe we have this right because our forefathers said so.  Happiness, like all emotions, are fleeting and, especially good feelings, don't last long.  The pursuit of happiness is forever.  We have the right, as Americans, to pursue happiness our entire lives.
When I heard JW read in Boston Friday night, it changed my life, my self-appreciation, and hopefully my writing (for the better) and success as a human being.  She made a comment that at one point in her life she was suicidal.  It didn't work, thankfully. She decided then that she was sick of living half a life.  She also said, "...life is trauma..." and when I met her to sign my book I had to thank her for that.  I've been living half a life for a long time, especially the last 6 years.  I don't feel good every day.  I don't want to get out of my PJ's most days.  Most days I want to sleep, and if I can't I immediately turn on the tv and plop down on the couch.  The ass imprint where I sit is bigger than I'd like it to be, if I'm going to leave an ass imprint on anything, and it's still there when I get out of bed after 12 hours, or sometimes 3 days.  This isn't working for me.  I can't live half of a life anymore.  And I especially cannot continue to not write, not try to get published.  Maybe the talent is so much here in my blog, it'll come.  I'm a poet, and poet's are a very different breed than a literary writer (notice the stress on literary). 
I found last week that novels are probably not the way for me to go, as well.  There are so many rad short versions of writing -- I'd never considered an essay before, but I don't want to always write with a setting, developed characters, plot, climax, etc. I like to write about what's twirling around in my brain, or maybe it's my soul? There's also flash fiction and experimental, and so many other things I can write.  The intimidation of the length of a novel has steered me clear for 20 years.  Yes, 20.  I wrote my first poem at the age of like 4, and my short story won some kind of award in elementary school.  People have always told me I should write.  They're right, I should.  I just shouldn't be writing what I do (other than poetry) the way I do (even some of my poetry).
I'm dedicating this year (between now and the next AWP, March 2014, Seattle baby!) to learning about my craft, taking at least one writer's retreat, blogging here twice a week (bare with me at first, kids) and starting my writer's blog.  I do regret a bit that that changes my business plans for this year, working on designing and creating and starting a fashion biz, but writing is my first passion, the first thing I remember learning how to do is read, and I'll never be able to keep the rad phrases from popping into my head.
thanks for reading, all comments welcome

Finding inspiration, in the obvious and not...

So far, I've talked about being a survivor of traumatic body and brain injury. Did you know the reason I started this blog is because I'm a writer dying for an outlet and an audience? More than that, it gives me a consistent topic to write about and a sort of direction I find hard to find the self-discipline to maintain on my own. But, really I'm a writer. And I officially know that I don't want to be known as a disabled writer, but a writer who happens to be disabled. I don't want to be force-genre'd simply because my first recognized writing happens to be about or involves in some way someone with a disability.
Right now, I'm in Boston and an AWP conference. I'm with 12,000+ people who also call themselves writers, artists, creators. It's been a major struggle for me, physically. It sucks.
I got here Tuesday afternoon. My aunt, a published novelist and successful freelancer, Patti Frazee, met me here. Wednesday we went out sightseeing -- I've NEVER been to New England before, and I've been dying to see Boston for 20 years. Last year, the AWP conference was in Chicago, and that was the first time Patti got to introduce me to her world. Last year, we didn't have time to see the city. This year, I came Tuesday thinking the conference started Wednesday, so I was so stoked when I realized it started Thursday and we had all day Wednesday to sightsee. Patti lived in Massachusetts after college, as well as NYC, plus she's visited here in the past, so she had some ideas to build our experience together here on the east coast. I think she enjoyed the fact that it was my first time here and that she was the one that got to show me around, and to be honest, Patti is someone who I have a certain bond with, she understands me a way that others don't, she's allowed me to fuck up and make mistakes without giving up on me, she's one of few people that I know had the highest hopes, and she even maybe had faith, that I would get my shit together, clean up, and start writing or at least doing something to try to meet my potential. Last year, Patti introduced me to a friend of hers at the conference, and she mentioned that I was a poet, "a good poet, like really good." Last year, she gave me the confidence to start calling myself a writer.
Tonight, I went to a reading by Jeanette Winterson and was blown away, inspired, speachless, crying, laughing, connecting, you got it.... I may have my first writer crush! She said so many amazing things, one of them being that she didn't become a writer, or learn to write, she just was one. That's me. I'm not published, other than in social media and that doesn't count! At the same time, I'm also unsubmitted, I've never tried to get published. All of my poetry is still in journals all over the place. She made me believe that it's my everything to write, I've been writing since I was 4 years old. I'm a writer, whether you've read or heard my work or not. I'm a writer, and no one can take that away from me.

a perfect PSA (public service announcement)

I said before that I didn't want all these posts to be "woe is me," and I don't want this one to sound like that either, I want this to show just how rude and horrible and plain mean people can be. However, today's ignorance turned it's head around and treated me like a human.
I preface this story with what I look like today. My hair is hot pink, baby pink, and blue, pulled up in a sloppy, messy bun. I'm wearing Levi's, a sleeveless hoody with monster fur around the hood and zombie pin-up chick art on the back and there's is a monster chick on my skinny Mary Jane's. For those of you who don't know what I look like, my full sleeves (tattooed arms) are showing, and I never cover the words on my knuckles or the brass knuckles tattooed on the top of my hand. I don't care where you live, there are always people who are going to draw negative conclusions about someone who looks like me, and a lot of people aren't even sort of concerned with disguising their stares, disapproval and ignorance.
I am flying to Boston today. In fact, in 6 minutes I will be over Detroit. Pretty rad! Traveling east for me usually means: Omaha or Dallas, and I've only been further east from that to Minneapolis and Miami. But I digress...

I have had disgustingly horrific experiences as a disabled woman traveling in the past. I boycott most airlines I've flown in the past because of the way I've been treated by the staff. I'm in a good mood today so I'd rather not relive those devastating moments. I am going to write about the bullshit I dealt with earlier because it has a nice conclusion, unlike most of the others.

When I travel by air, I request a wheelchair when I purchase my ticket and have to also ask upon check-in for wheelchair assistance to the gate and also at my arrival gate. The problem isn't that I can't walk, it's that I can't walk long distances without ending up in pain or breathless (remember, my vocal cords are paralyzed partially closed, meaning that I can't release CO2 like normal, so it's kind of like sucking on an exhaust pipe).

Like any other day at the airport, I checked in, asked for a wheelchair, got my boarding pass and went to the wheelchair stand. The chick that pushed me to the gate was rad -- super nice, helped with whatever I needed her to, got my pre-board pass at the gate, and stood in line to get me diet coke. Then I got to the gate.

My pusher told the woman at the gate when we pulled up that I was a pre-board and not to forget me. Then they both disappeared. People were lined up to board, everyone was off the plane that needed to be, and suddenly, another gate attendant- I'll call her Ignorant- was walking around, grabbing people with (baby blue) pre-board passes and having them board. I got up from the wheelchair to ask if she was pre-boarding and she basically told me no. Again, I travel frequently and always fly SW. I have never, ever seen the gate attendant walk around and pick the people she was going to let board.... pre-boarding is called, on the intercom, like this: "Anyone with a pre-board pass- those who need help or more time getting seated or traveling with small children, anyone with a blue pre-board pass may board now, and then we'll start boarding all A tickets." I watched her hand pick several pre-boarders, about 7-8, then she called for pre-boards. When I just handed her my ticket and pre-board she tried defending herself by saying: "I boarded all wheelchairs first." I said, "FYI I was in a wheelchair, too."
Bad enough? Yes, but not over yet!
I stepped onto the plane, as I always do, and ask the flight attendant for assistance with my carry-on because I can't lift over my head. She tells me I should have checked it, and for future travel I needed to check anything I couldn't fit under the seat. I told her that no one had EVER told me that before, and that a flight attendant from another airline had JUST told me on the train to not be shy to ask for anything I needed from flight staff. She said she'd help, followed me to the seat and then said, "You can help me, right?" I said, plugging my trach, "NO! I have a hole in my throat and 15 screws in my neck, I told you I can't life over my head!" She huffed and lifted my 10 lbs. suitcase into the overhead compartment. Walking away, she said, you don't have to explain everything. I said, "No, I don't, or shouldn't have to, but people like you won't help me unless I explain my disabilities to them, so yes, I do have to explain, even though I have confidentiality agreements with all my doctors. People like you make me give full disclosure."
I immediately called my husband and told him the story, I was so fucking pissed I almost thru a temper tantrum..... the girl that took the aisle seat in my row said, I'm sorry, I wasn't eavesdropping, but I'm really sorry you had to deal with that, I'm a physical therapist and it's just bullshit to hear you get treated that way. She explained that she advocated for people who can't speak for themselves, and how sad she thought it was that I had to explain myself, I should be able to say, I'm disabled without going into detail. Naturally, we began speaking (I mean, I go to physical therapy 3 times a week) and I ended up telling her more detailed accounts of medical problems, etc.
Ok, so both these women were complete bitches. But, the flight attendant, she decided to be human.... she approached me at me seat (little privacy), and apologized repeatedly, almost in tears and caressing my hand. She said that they are told to offer assistance but not life for the guest, but that she was so sorry. And she was genuine, shaking voice and watery eyes and all. Then, she "bought" my Bloody Mary for me.
She also told me that she "set the other girl straight," and that next time I should stay in the wheelchair.
So, I'm glad that someone learned an important social lesson about judging others today. Maybe just one other person will be treated better by her, but even one makes a difference. I told her, during her apology, about the woman at the gate and she said something about the situation, don't assume someone can do everything you think they should just because they look like they can..... it's just WRONG to accuse someone of acting like they need help..... do you realize how many people, especially bull-headed, stubborn people, have a hard or impossible time asking for help? then to be treated like a dick for asking? It SUCKS!!!!!!

We all have bad days, but come on! I at least don't make a comment until someone else is mean. Isn't just easier to help someone, rather than make snide comments, putting all that bad juju out into the universe, only to come right back to you? Think, next time you start to comment about someone parking in a handicapped spot that looks 'normal,' .... the hole in my throat looks like a choker and all the screws in my neck are just that, IN my neck. I wish people could just treat each other like fellow human beings.




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Location:somewhere between Denver and Boston

The support without the pity, please

One of the hard social issues I hate dealing with is pity.... maybe that's why I get mad when a friend will talk about something and then use the phrase, "I know it's nothing compared to what you've been through..." I guess that goes back to my last post about things being relative, but it's even more than that.
The thing is, when you deal with something every minute of every day it becomes your normal life.  I battle with myself whether it's worse to have acquired medical issues or ones you were born with.  Then again, I don't like to compare, but the emotional and mental dynamics of someone who deals with things like chronic pain, depression, anxiety, PTSD, effected mobilities, or whatever, are fascinating to me.  The different ways people handle their shit is really quite interesting.
Anyone who knew me pre-injury knew a very different Shannon than the one sitting here writing this.  I even remember the last time I saw my grandma Joanie she asked the nurses if they were sure I didn't have brain damage because she didn't recognize the light-hearted person in front of her.  I guess to me there's irony in the fact that my injuries made me less angry, in a sense, and a much nicer person.  Maybe it was the fear of being hideous for the rest of my life, initially.  Maybe it was denial.  Maybe it was trying to be strong for everyone else.

I really, really appreciate the hits in the last few days, and hope people keep reading.
I welcome any feedback or questions, I'm really not too shy about answering anything.  The cause of the injury is irrelevant.
I'm really trying to use this blog as a platform to find my voice, keep me writing (my #1 passion), and find the essays and short stories that will fall out of my fingers and onto my screen.

I figured it'd be nice, especially for people who don't know me, to share a recent picture, because, really, the hospital gown doesn't do me justice!

quite a difference from 6 years ago today:

It's all relative...

First, I'm so annoyed with myself for not writing for 20 days. Especially since in the last 3 weeks a perfect example of when I use this cliche phrase. It's always scary when you find out a friend or family member is sick. The scariest part of any injury or illness is waiting to find out what it is that's wrong.
A few weeks ago, a friend was in the hospital, having all sorts of tests run, with a wide array of possible diagnoses on the table. I won't say much about specifics, but I will say that the possibilities ranged from infection to cancer. This girl's family... I call her mom "mom" and unofficially adopted her grandma at the hospital. She's been around, in my life, some off and on, for 10 years, so before the accident. As with most of my friends, we lost touch occasionally and usually go pretty significant periods of time without seeing each other. But there's no doubt that we'll always be there for each other, and with our almost parallel lives and our understanding of so many events in each others' lives, she really is my best friend, whether we see each other or speak often or not.
So, I explain this much to you in hopes you can understand the torment, sitting in the hospital room for hours waiting to hear what was going on. Because the possibilities were such a big extreme, there were moments of desperate fear, the fear of losing one of the only people in my life that understands me. And then, in the midst of tests and blood draws and CT scans, another of my fears -- the comparison to what I've been through.
Yes, my injuries, the numerous surgeries and the daily residuals suck, but that's only the worst that I have been through, and you can't truly understand that. I truly and whole-heartedly believe that it is all relative. My fear, my fear, my fear come true that maybe friends will avoid talking to me when they need a friend to avoid feeling like, burdening me, or whatever, or by comparing their problem to what they think I've been thru...
Thankfully, my friend was treated and released and we have many more years ahead of us to fulfill our dreams...


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Not everything is thorned roses or dog shit on your shoes...

I so don't want to be the girl that's using her blog as her outlet for anger and self-pity.
Not every.... oh, so a product of the 80's! Almost defied Poison by saying that NOT every rose has a thorn. But it doesn't. Not everything reminds me of something negative.
The same movie that reminded of how much I don't know, also reminded me of how much my mom was there for me, how much of an advocate she tried to be for me, with no real direction, watching her oldest daughter fight through the unknown while trying to hold it together and make sure that there was somewhere for me to go when (in the beginning, if), I got to leave the hospital,and what was I going to need when I was released, and who was going to pay for it.
Sometimes I still think that she still holds on to more trauma than I do. Not to mention that every time I open my photos one of the first I see is a picture of my sister saying goodbye to me. I'm told they were told several times to "make their peace" with me. But there's this picture, of my sister bending over me with all these machines around me, kissing my cheek and I think whispering in my ear.
There's another moment with another family member, one that I hold very close to my heart and feel a special bond with, that I think impacted her more than I. I am not sure how quickly my family was at the final destination hospital. Most of my extended family lives within an hour of the hospital. At one point I gained consciousness to find the face of someone who didn't live within an hour of the hospital, but would be there faster than god if there was I possibility I'd be taking my last breath. And I knew that.... through all the IVs and who the hell KNOWS what kinds of pain meds and analgesics and other magic drugs were pumping through my brain, I knew when I saw her face that I may actually be facing the end, and gauging by how far she traveled to be there, it was going to be slow. I think that I processed all this relatively quickly after seeing her face, and suddenly all the machines are going off and I think my body was spazzing out, maybe I tried pulling out tubes and stuff again, I'm not sure.... but I know that she still thinks about that moment, that that moment haunts her in a way, that 6 years later she'll still apologize and talk about it. Maybe that was the moment that I realized that my reaction to others' actions impacted them which in turn impacted me, and that it was easier to stay calm no matter what, and somehow I achieved that.
That's definitely not a thorn, to learn how to get others to put their best and most compassionate sides forward, to make others face their fears by interacting with me, that a lot of people had to evaluate their feelings and really their own lives.
Another family member, or family unit within the family, held a huge part in my recovery in the hospital. Again, it's incredible to see the impact trauma has on others.... The fear of loss, fear m of the unknown, maybe fear of not being there if something bad happened, and then eventually fear of not being there when major progress was made, when a "can't" was proven wrong. That family unit, I still wonder what the impact was on them...
Everyone in my family was there for me in those moments, every single member of my family - every aunt, every uncle, every cousin, my mom, sister, brother-in-law and even 2 year old nephew, and my grandma, bless her heart and her soul - every single person that was there impacted my recovery. I saw faces I wouldn't have expected. I saw sides of people that I didn't know existed.
I'm a really, really lucky chick. I don't know many extended families as close as mine, and I don't know many people who have put their family through as much as I have who even still have a family to call their own, and mine came together to help me through a time I couldn't be without them.

Small reminders of things forgotten...

Sometimes I realize there are a lot of things I don't remember. And odd things that I do. Some memories I can put at specific times and others I just know happened around a certain timeframe. I have a lot of unanswered questions that I probably won't ever get real answers to.
I know that at one point I wasn't breathing on my own. I honestly think I passed out at the scene from lack of oxygen, because I remember trying to answer to my name with my chin on my chest and just hearing myself gurgle, then I blacked out. The next thing I remember is having my clothing cut off in the ambulance.... they found some piercings, I guess I woke up after they cut out a couple, I remember them asking me if I had any other piercings and that, for whatever reason, I could't speak but had to point. Was there a CPR mask on my face, pumping air into my mouth and lungs? Was I intubated? Was I trached by the EMT's? What medical tests and procedures were done at the first hospital? Actually, I can find out some of this info by trolling through my mountainous medical files.
At one point, after my story went international and I was getting a lot of media, therefore public, attention - not all positive, mind you- one of the EMTs contacted me through a now frequently unused social media site. She reminded me of a freakout moment that I had. I don't know if what is in my head, my memory, is of the actual details of the moment, that she told me of, or if my own true memory is of the emotion and panic of the moment and she filled in the details. This woman, so help me I wish I could remember her name (not that I would tell you), I do know the one detail memory that is my own is her touch and her eyes. I know that at one point, I believe it was at the, what I like to call, layover hospital, I gained consciousness again. Before anyone could realize that I was conscious and pretty lucid, before they could gain their composure, I saw the panic in the room and freaked out.... In my head, maybe it's my fantasy, this woman saw from across the room that I saw what was going on, that I was freaking the fuck out and couldn't speak or scream -- it was like those dreams we all have where you're trying to scream and nothing comes out! Wow, it really was, it was totally, exactly, completely TOTALLY like you feel in that dream! I don't remember pain in any of this, that's a blessing, I guess. In fact, I don't remember any pain even before the paramedics arrived. But I remember panic.
Back to this woman. Somehow, for some reason, she looked away from the madness in the ER, the doctors and paramedics and nurses, she looked at me and realized that I was awake and scared as hell, she came to me and put her hands on mine, I looked in her eyes, I couldn't hear anything that was going on.... I don't know if I heard silence or overwhelming chatter-turned-static, but I didn't hear anything. I felt her hands, looked in her eyes, and went back to wherever I needed to be to not be where I was.

Those little reminders that completely ruin my day.....

Of course I will always deal with residual issues - pains, nerve damage, mobility limitations, and the most traumatic: the trach.
Having a hole in your throat is actually one of those medical things that's worse than you'd think. It's rare that I really talk about this -- I just hate sounding all whiny, I don't like to remind other people, or myself, that I have more limitations than I'd like to admit. There are a lot of things people don't realize people with trachs deal with. Think about the path air takes when you breathe in through your nose: all those hairs in your nose catch dirt, dust, fibers and who the hell know what else. When I breathe thru my trach, the only thing between all that crap and my lungs is my trachea. I have a large hole in my throat that is open to the inside of my respiratory system.
Instead of blowing my nose, I need to blow my trach. If I don't take it out and clean it daily, it stinks and the skin around the trach gets itchy and rashy. The absolute worst, most heartbreaking part of having a trach, for me, is the obvious restriction -- water. No trach can be so tight that water won't get in from the space around the outside of the trach. This is such an issue that one with a trach could drown just taking a shower. It took me years, but after spending years coughing and choking on water every time I got in the shower, I found this odd looking plastic thing that goes around my neck and Velcro's in the back. In the front, it's this robotic, Star Wars-looking guard, but even then I occasionally choke on a drop of H2O. Of course, it's bad enough that it complicates taking a shower, but fall asleep in the tub and slip down.... I don't know how much water you need in your lungs to drown, and dry drowning freaks me out.
It's easy to think about what else I'm missing out on-- I lalalalove water parks. Living in Denver for almost 20 years and never went to the water park. Lived in LA for about a year and never swam in the ocean.... living blocks from the beach in Orange County was a constant reminder that I'll never be able to learn to surf.
Yeah, I'm "lucky." Obviously things could be much worse. But they aren't. I don't need to process and deal with what I don't have to worry about, and what didn't happen to me, but what I have been through, and, man, it really sucks that I can't ever surf!
I really would LOVE to find a vocal cord specialist with the same type of paralysis as I have, or at least to find one with the compassion and dedication to help find a fix.
You'll hear a lot about mostly the fucked up doctors I had, but sometimes I'll give a rad dr. props. Here's a bad one: one of the drs that has done a trach surgery for me (in the early years, with the hospital straps they give you to use around your neck that hold on with velcroe, I coughed out my trach in the middle of the night and it closed before I woke up and realized it - so, I have had trach surgery about 4-5 times, I believe. Interesting fact here: I left the hospital able to breathe on my own.... the halo I was in and the damage to my eyes directed my neck to heal at an angle and crooked/tilted, and all the nerves on my left side are stretched to hell -- 7 months after my initial month long hospital stay I was rushed to the hospital with co2 poisoning because my cords wouldnt let the gas release)... anyway, this one doctor told me he'd never see me again because I was very depressed at the time an asked to spend time in the psych ward -- he said I was stupid for being depressed and he would no longer see me because I had a perfect quality of life and was weak.... He not once asked me why I was depressed, and this was only within 2 years of the accident.
Usually, I'm ok with having a blowhole. Really. A lot of the time, it's actually funny.......





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The Anniversary

The other day was the 6 year anniversary of the accident that landed me in the hospital for just over a month. I'm guessing that todayish would be the anniversary of one of my first memories, but considering the amount of drugs that they were pumping through my system, who knows what order my memories actually happened in? ;^)
I know I couldn't speak - by the time I left the hospital I still had just a whisper - whether there was a tube down my throat or I was (later) teaches and had vocal cord paralysis. I would try to communicate by writing, which wasn't always the easiest. There were times that I was strapped down, because I'd gain consciousness, freak out and try yanking out all the tubes, so trying to write out something wasn't ideal. Or when I was so drugged up I thought I was writing letters but all that came out were dots, or I'd pass back out in the middle of a word.
I always had odd requests. I remember my mom needed to go to the store because I'd run out of paper, she asked if I needed anything and I told her I needed eye cream.... Seriously half dead in the ICU and I was worried about wrinkles! Or, I guess I thought they weren't feeding me because it would irritate internal wounds, so I asked my mom to ask 'the lady' if I could have some mashed potatoes with just butter, no salt.
Usually the anniversary has a deeper impact... This year I'm so consumed by other things I haven't really had the time or energy to reflect... I guess that's why I've chosen to start 'writing it out' now.

what happened?

Here is the short version, with my best attempts at not including my feelings, opinions, or even memories.  My attempt here is to tell what the injuries were.  Disclaimer:  there are several things that I either misunderstood or weren't true. I'm telling what I've been told and do not claim that everything here is 100% accurate, like numbers of surgeries or I may have some details about what injuries effect what confused.  That's why I'm trying to keep this as basic as possible.  I can answer questions that others or I have later.
I woke up in the hospital.  I had tubes coming out and going in to me everywhere. I could not speak. At one point I was strapped down to the bed for pulling things out that were keeping me alive.
I finally came to find out that I had survived an atlanto-occipital dislocation.  My skull had become dislocated from my spine.  This is not the same thing as breaking my neck.  The analogy would be the difference between breaking your arm and dislocating your shoulder. Only I dislocated my head.  I had also blown out the back 20% of my hip, and being on the borderline for surgery, it was decided to let it and my broken ankle heal without surgery.  I had a trach for awhile, but it was removed before I left the hospital.  FYI, I now am trach dependent. I had around 13 surgeries in a week.  I had pneumonia, my organs began shutting down, and my brain was bleeding.  Eventually they inserted a feeding tube.  Right away, I believe the day after the accident, my skull was fused to my first vertebrae, my C1, down to C3.  Most cervical fusions do not involve the skull.  I was placed in a halo, which attached to a plastic chest piece that was lined with wool -- it was not removable.  In fact, after they decided they needed to place the tube in my stomach they had to have some metal electric sawed off the vest and they had to do it with me in the piece.  I had severe nerve damage, including damage to most of my cranial nerves.  Eventually, my eyes crossed,  a sign of optic nerve damage, and I had double vision. My trachea clamped shut.
I was in the ICU for weeks, then moved immediately to the rehabilitation floor for strengthening to get ready to leave the hospital.  I would only be able to learn to walk again. Nerve damage is temperamental and unpredictable, and nothing could be done with my neck for 3-4 months. I'd be released from the hospital the end of February.
I'd be refused

My new neck

I know I said my next post would be the accident story, but I'd rather, for right now, post a pic of my new neck, post aug 21, 2012 surgery to correct further damage from jan 2007.

It's about time....

So. Finally. A real first post. It's about time, but until now, I wasn't sure exactly what I wanted to share. Not because I couldn't think of anything to write, but because I have too much to write about. I am a first time blogger. And I have so much I want to share with the world, but some of it I don't want the world to know who said it... And not just my words, but what's said to me by who and what it means. I really am not here to piss anyone off by telling the world what they said to me and how inconsiderate or fucked up it was.
So, maybe I should have used a pen name, but then I'd have to try to cover my identity by not being honest by default - lack of full disclosure. And you deserve that, if you are going to spend the time reading my rants and occasional epiphanies. And I'd have to cover up my real injury, and lets face it, isn't "internal decapitation" one of the things that got you here?

Maybe this post should tell you about the accident. Then again, you can also google my name or internal decapitation and find out a lot on your own.... But those aren't my words. None of them. There may be a quote here
and there, but no one really told the story from my eyes. And I don't think anyone's heard it this way yet. And maybe, I'll die before I finish telling you my story the way I want it told. But that won't be my problem, and I think writing this blog will solve many other problems that are very much mine, and really mine alone. Yes, I have family, and I am married, but the way I have been since that day is only my problem, and only I can fix it. I hope through writing in this manner, allowing comments and public viewing, writing with honesty and honor, telling my truth,explaining my experience in this way, I can handle the rest of what's waiting for me.

In my next post, I'll give you the basic facts -- the time period, the surgeries, what the doctors said, etc. after that, like I said, it's time to be honest with myself and others what reality really looks like.

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