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.




- Posted using BlogPress from my iPad

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...


- Posted using BlogPress from my iPad

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.......





- Posted using BlogPress from my iPad

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.