wheelchairemo

[wheelchairemo]

I can’t remember life without pain.

I remember life when I wasn’t in as much pain. Like where I would get little spurts here and there throughout the day, not like the constant pain I’m in now every minute of every day.

I’m currently sitting here with the right side of my face twitching and the nerves inside my mouth causing an uncomfortable amount of pain.

I’m having a flare up because I’m anxious, and a little upset.

I’ve lived with pain my whole life. Like I said earlier, I don’t remember life without pain. I’ve lived with chronic/constant pain for the last ten years. A few years ago my emotions started getting tied into it. Whenever I feel sad, angry, frustrated or anxious I get a flare up. It sucks. Usually it’s my whole body but tonight it’s just my face. And that’s annoying because the only thing that helps with facial nerve pain for me is a shot or analgesic gel. I’m out of my gel right now so I’m sitting here with this ticking pain.

I needed to tell someone about this, even if it’s some stranger on the internet who’s reading this. A blog that hasn’t been updated in years. I thought about Facebook but I feel like people think I’m whining or I whine too much about my pain. I suppose that’s what this post is, whining, even if it’s to no one.

Two weeks ago I was in so much pain in my back that I vomited from 7am to 10pm. That was fun. I spent a week in the hospital. I felt like I was going to die, or at the very least pass out. I almost did.

It’s funny, as I was lying there in the hospital bed, severely dehydrated in and out of it while a special technician was called in because like always they couldn’t find a vein for an IV, I thought about how I’m so used to hospitals and being poked, pronged and pulled, that I really don’t care what they do to me there.

I’m like do what you gotta do.

I suppose most people would be scared. My mom was. I could see it in her pacing and refusal to get some sleep most of the nights I was there.

I was never given a choice to be scared. It’s the only life I know.

I don’t like it at times and it’s not fun, but it’s the cards I was dealt and with that I don’t get to be scared.

It is what it is.

Guess I’ll end it here. Hopefully the stronger dose of pain meds kick in soon and at least make me sleepy so I can finally get some relief from this pain.

Thanks for listening.

xxx

[wheelchairemo]

Any tips for stopping an oncoming panic attack?!

I can’t stand ageist sexist bullshit or hypocritical arguments.

Literally slapping my arm to fight the urge to scream.

I should never be stopped from speaking my truth. Or to not be able to stand up for myself when someone is making false accusations about me.

That’s NOT ok.

[wheelchairemo]

LIAR, LIAR (THIS RECORDING IS PROOF)

I am not a liar. I don’t like lying, and I don’t understand how others especially those who are supposed to be closest to you, can lie so blatantly and see nothing wrong with it!

I’m so tired of sitting back and taking it. Of words being put in my mouth. Of threats being made towards me if I attempt to fix the situation. If you are a part of this family then ACT LIKE IT.

Nothing is ever one sided. To say you know and see everything yet refuse to hear the other side of one’s story is completely unfair and rude. If you still want to decide after that you don’t agree with me so be it, as least be respectful enough to let me tell my side. Saying you’re refusing to hear me out and ignoring me because you don’t wanna get involved is such a load of bullshit. If you truly didn’t want to get involved you never would’ve sided against me without hearing both sides! You’ve made up your mind. And it’s so completely unfair I’m not allowed to speak my truth.

Yet I’m the one lying. I’m the one starting shit. I’m the one being disrespectful and rude and ungrateful. According to you, right?

Where did this notion of “I’ve lived longer than you therefore I know more than you!” come from?! It’s such a load of shit and not a valid argument. Yes, you’ve lived more years physically on this earth than me. Yes, you are more experienced in certain things than me. But that does not mean you know more in general than me about life just because you’re older. Nor do I claim to know more than you! We just have different experiences. And just because you’ve lived longer on this earth doesn’t mean you know more about being a disabled woman, about menstrual cycles, about art history, about sexual assault. Which btw are all life experiences. Just like I would never claim to know more than you about electrical work or having cancer or driving trucks. Someone saying they know more than you and lived life more than you just because they’re older is such a masochistic sexist ageist piece of shit to me.

I’m just sick of dumb shit. Of rude people. Of people attacking me and starting unnecessary drama to gain empathy. It’s stupid. And childish. Yet again, I’m the one acting like a child apparently.

Idk what to do anymore. Anything that comes out of my mouth, I’m damned if I do damned if I don’t.

[wheelchairemo]

The Funeral

It’s crazy how people you’ve known your whole life, people you never thought could hurt you, just do a complete 180 and turn into someone you don’t even recognize.

I’m not ok. I haven’t been for a while.

I’ve been struggling to survive in an extremely toxic environment the last 2 years and it seems to be only getting worse the last 6 months. I’m not sure how I’m gonna survive another year. Because that’s how long it’ll be before I’m financially stable enough to even think about moving out.

I’m sick to my stomach every day. Frustrated beyond belief. Afraid I’m gonna do something or say something I can’t take back. And the worst part is I want help! I’ve been asking for help for months! But no one takes me seriously.

I feel stuck and alone. Except for my dog. God I don’t know what I would do without my dog. She’s my only sanity and the only one who protects me.

I just don’t understand how we got here? Why this change? I have an idea but nothing that anyone would actually believe. I just never thought someone I trusted and respected could be so easily influenced by outside forces and become a stranger to their own blood?! Why?!! I really don’t understand. It’s not ok.

And I just need to let it out because I feel like I’m going insane. And maybe I should get back on the antidepressants, but that still won’t fix the problem. All that will do is numb the hurtful words and make it seem like I’ve become submissive to the abuse. When did standing up for yourself especially in one’s household become a crime? Why should I allow bullying? Because we’re blood, so that makes it ok? That’s NOT ok. Yet I’m the one being disrespectful and ungrateful and rude? Because I asked a question? Because I wanted to act like actual adults and sit and fix the problem by having a conversation? I’m 40 fuckin’ years old so please don’t treat me like a child. Being a family does not mean one person has a dictatorship over the other. That I’m supposed to sit and keep quiet and answer “Yes ma’am” “Thank you sir.” That I’m not allowed to have an opinion or stick up for myself and correct someone when words are put in my mouth. Being quiet and allowing this to happen is abuse.

Idk, I just needed to let this out somewhere.

[wheelchairemo]

It’s been too long since I’ve been here. I feel like I need this again. For me. If people find it whatever. I feel like I’m going insane.

[wheelchairemo]

When did my life turn to such shit?!

If you would’ve told me 3 months ago I’d be here I’d say you’re crazy I’m so incredibly happy.

If you told me 4 months ago I’d be so happy then my world would fall apart in ways I couldn’t even imagine I’d say yeah right.

Yet I’m here. Didn’t think things would get this bad. Didn’t know how fucked I would be. Didn’t know how much my life would change.

But it’s done and there’s no going back.

People are saying chalk it up as lessons learned. I guess, but it’s more like losing faith and hope in people and things and cementing my lonely existence.

Maybe it’ll pass with time. Maybe I’ll just die alone.

[wheelchairemo]

I swear this boy is more fuckin’ emo than I am...

[wheelchairemo]

See, I always thought Mike was my Jake Gyllenhaal, but he was my Joe Jonas. Jon was definitely my John Mayer and Harry Styles mixed. And other Mike was my Taylor Lautner. Jimmy was my Tom Hiddleston and Joe was my Calvin Harris. Now I’m trying to figure out if new boy is my Jake Gyllenhaal or Joe Alwyn?

Everyone just ignore this post.

[wheelchairemo]

You know that feeling you get a few hours after surgery when you have so much pain medication in your body and your stomach is empty because you can't hold anything down and you can't decide what's worse, being in excruciating pain with no meds or being in a moderate amount of pain but feeling nauseous because of all the meds? Yeah, that's currently how I feel.

[wheelchairemo]

Little thing I wrote for Loveinthelandofgiants.com

Some friends of mine asked me to write a short blurb for their blog about disability in the media. You can check it out here towards the end of the most recent post, or read below.

Nashville Takes On Disability in Season 5, But Are They Doing It Right?

By Melissa Sanchez

Hollywood has come a long way in recent years when it comes to representing people with disabilities in film, TV and stage. Whether it’s creating more storylines on mainstream shows for those who are differently abled (i.e. Superstore, Glee, Spring Awakening) or actually casting disabled actors in lead and supporting roles ( American Horror Story’s Jamie Brewer has Down Syndrome, while Speechless’ Micah Fowler and Breaking Bad’s RJ Mitte both have Cerebral Palsy). While a once overlooked community is now getting the opportunities they deserve, there still seems to be a bit of division in Hollywood on how disabled characters are portrayed.

1.  We are the inspiration porn, we are pitied, helpless characters everyone feels       sympathy for.

or

2. We are actually represented as normal human beings with real feelings and         problems just like everyone else. We just happen to have a disability - but we     don’t let that stop us from living our lives.

The latter is rare.

Which brings me to the show Nashville. Spending its first four seasons on ABC before being picked up by CMT in its current 5th season, the show focuses on fictional country musicians both popular and up and coming, trying to make it in the country capitol of the world. Starring Connie Britton (Friday Night Lights) and Hayden Panettiere (Heroes), the show has seen its share of cheating, addiction, and coming out of the closet storylines like most primetime soaps. This current season opens up following last season’s cliffhanger where Panettiere’s character Juliet is involved in a fatal plane crash. This new season’s story line has me a little irritated about how Juliet handles the aftermath of her accident. All Juliet does is complain how she can’t do anything while being stuck in a wheelchair, how she’s not “normal”, and that she can’t go out in public like “this”. Not to mention how useless she thinks she is as a woman in a wheelchair raising a baby. While it can be challenging, I know lots of women with disabilities in wheelchairs that raise children just fine.

The first episode The Wayfaring Stranger picks up with the young singer left for dead in a field of wreckage when she is saved by a passerby. She is the only survivor of the accident and we later find out her injuries include current partial paralyzation of her lower body (which the doctor says may be temporary ) due to shattering vertebrates,  which is currently leaving her wheelchair bound. After surviving such a traumatic experience and losing sensation in your legs anyone would be terrified, that’s understandable. So I get Juliet’s bad attitude towards the situation. What bothers me is the way the writers are handling the storyline of Juliet’s new disability. We hear the cliche “I know you’re gonna walk again”, “You’re so brave”, and how they thinks she’s a miracle from various characters throughout the episodes. Later her estranged husband Avery (Jonathan Jackson) takes her to the accident site per her request and while pushing in the fields her chair gets stuck to which Juliet exclaims “Dammit.” Sure all of us in the two-wheel community have been there, but instead of our Dammit-stupid-wheel-got-stuck-again swearing, Juliet’s tone is a more irate Dammit-I’m-useless-in-this-thing statement. On that note, Juliet is supposed to be a multi-million dollar country star. Couldn’t they have gotten her a better looking wheelchair than that rinky dink cheap hospital chair she’s rolling around in?! Seriously.

In Back in Baby’s Arms, the second episode, we see Juliet trying to feed her baby Cadence to which the child does not respond. Avery offers advice on how to feed her but Juliet instead takes her incompetence as a mother and seems to blame it on the fact that she is now in a wheelchair, saying “You just do it. I’m useless” while rolling away. Avery then tells her she is not useless, only for her to turn around and exclaim “Well I might as well be! How am I supposed to raise a daughter like this?!” Like this of course meaning in a wheelchair. Her husband assures her she is not alone and he will be by her side to which she replies “Yeah I have you for now. How long are you gonna want to take care of a crippled and a baby?” I’m sorry but there’s nothing I hate more than the words “crippled” and “retarded”, especially when it is being used on a national platform.  It is derogatory. Moving on, Juliet asks Avery to look for the woman who saved her because she can’t go out (because you know, she’s in a wheelchair and that’s embarrassing and all); she can’t let people see her like this. Later Juliet goes to a church where she believes the woman who saved her is a parishioner. We see a Pastor come out to Juliet’s van as she tells him “Thank you for coming out here. Getting in and out of this car is an ordeal.” Gurrrl, you have a wheelchair accessible van with a ramp! That is not an ordeal. Most of us wheelchair users would kill for an accessible car to make our lives easier!  Stop complaining.

The latest episode Let’s Put It Back Together Again, we see Juliet struggling more adapting to her new life. While talking to Avery she drops something and is unable to pick it up from her chair in which she becomes frustrated. She is also challenged with the obstacle of stairs, aka to the rest of the disabled community a place not being ADA compliant..A few scenes later and upset she tells Avery “Tell me this is what you imagined? Pushing me around for the rest of my life in a wheelchair like a sack of potatoes?!” She goes on saying both her and her husband would be better off if she would have died in that plane crash hinting life in a chair is a far worse fate. The next scene Juliet suddenly gets sensation back in her legs after her baby pees on her. I mean really CMT? A 3-story arc?! Hey I became paralyzed for three episodes but now i’m getting feeling back in my legs and all better. It doesn’t work like that. I hope that’s not the case and from what I’ve heard Panettiere’s character won’t be getting out of that wheelchair anytime soon. Still, I hope as the season continues the cringeworthy cliched storyline of being disabled gets better. The episode ends with Juliet singing with hope in her voice the phrase ”I’m on my way” (as to say to recovery) while playing the keyboard.

I as a disabled woman in a wheelchair myself am disappointed so far in the direction CMT is taking the character of Juliet. It’s sending the message that people in wheelchairs see themselves as freakish and good for nothing, while others see them as miracles and inspiration. Seeing as I’ve been watching this show from the very beginning I hope CMT takes into consideration how the disabled community can take offense to this and hopefully revise the storyline by shying away from the stereotypical portrayal of persons with disabilities. We are a community of world class athletes, NASA engineers, journalists who write for the Times, surgeons, artists, musicians and so much more. Again I understand this character acquires a disability (whether it will be temporary or stays permanent we shall see), but I ask the writers and CMT to do better research on the lives of those living with disabilities, or here’s crazy idea, maybe even have an actual person with a disability as a consultant?! So even if the character of Juliet stays permanently wheelchair bound for the show, there’s no reason why she can’t still get back out on that stage and continue to be a country superstar. Now that’s something I would like to see!

Nashville airs Thursdays at 9 p.m. on CMT.

[wheelchairemo]

If this year would just end I think we'd all be ok

- my pain has multiplied by 5x - the depression is real - people I thought would never hurt me did - I'm just so tired of trying to be strong - my dad died - I apparently lost friends because I've been a hermit? - I'm lonely That's pretty much why I haven't been around the last 6 months. Here's to hopefully a better 2017, because this year has beat the shit out of me .

[wheelchairemo]

Would you guys be interested if I did an alternative disabled fashion Instagram? I think I have no style but sometimes I really like my outfits. Dare to be different. Be comfortable in your own skin. IG: wheelchairemo

[wheelchairemo]

Watching Penny Dreadful in bed, cuddling with my dogs. The painkillers are working. Life is kind of perfect right now.

[wheelchairemo]

Why I thought a guy like him could like a girl like me, I don't know. Why I thought this pain would die, I don't know. Why I thought I could dig myself out of this hole, I don't know. Things that keep me sane: painkillers. Friends. Music. Art. My dogs.

[wheelchairemo]

THIS LIST. ALWAYS.

[wheelchairemo]

So freakin’ cute and what a great idea!!!