Excellent post from shinga, plus my response.

[ashbet]

Originally posted by shinga here.

So I know there are people talking "behind my back" (probably not in a purposefully mean way, just talking) about the fact that I post a lot or "too much" or whatever on FB.

Well, to those people...

Deal with it.

I don't have a workplace. I don't have the option to drive and go out during the day. I don't have SOCIALIZATION. If friends can come over, they do, but my friends have busy lives and it's a rarity. I have Will but he works all day and has his own social obligations outside the house.

I do not talk to anyone, all day. Facebook is my way to keep in contact with friends, with the world. It's one of the only ways I can share my life with them and vice versa.

So get the fuck over it and unfollow me if my frequent posts are so annoying to you... if you find me "pathetic" for being too disabled to find some other social outlet besides social media.

I won't miss you.

* * *



I shared shinga's post on FB (she had originally written on FB, but was generously willing to post it as a public LJ entry to make it easier to reblog), and one of my friends said (very kindly!) that I didn't need to justify or defend, and that I had the right to speak my truth and have my friends stick with me.

I started to write a response, and, well . . . it wound up being fairly long and passionate.

I'm sharing it here, and making it public, because it means so much to have friends who *do* listen, and who will stand up for me when others use silencing tactics to try and shut me up.

* * *

Just to be clear, I wasn't feeling defensive, I was sharing the words of a friend because they resonated with me.

This IS my life that I talk about, here and on LJ. It's not "dwelling on negativity" or "TMI" or "identifying with my illness" to say, hey, I deal with a lot of medical stuff in my day-to-day existence.

And being disabled does kinda suck, even before you add the terrifying financial uncertainties and realities, the lack of human dignity when dealing with the leaky mesh of the supposed social safety net, and the dependence that the system creates on getting insurance through an able-bodied partner, rather than being ALLOWED to purchase it on our own.

It's not my WHOLE life -- there's a lot more to me than EDS -- but I don't ever get a single day's vacation from living with this disease, and I don't have the ability to just overpower it with the strength of my will, or else I'd have done it by now.

Every day, I overcome.

As I was just saying to a friend who is dealing with a life-altering diagnosis and a terrifying prognosis -- sometimes, I'm riding the tiger. And sometimes the tiger is riding me.

But I don't stop fighting to get on top, I do my best not to surrender to despair (and if I do fall into that pit, I keep clawing my way out again.) I've lived with this long enough, and made those changes, and forced myself to accept repeated "new realities" that are different from my hopes and aspirations . . . because I know that I can get back on top of that fucking tiger.

And when I'm riding it, instead of it riding me, I have the capacity to find joy in my life.

I can love fiercely, I can stay loyal and faithful to my friends and loved ones, I can do amazing things, even if they're different from what I accomplished before.

They're not less. *I'm* not less.

And that's how I keep fighting, when the tiger is riding me -- I know it's a cycle. And I can get on top again.

But I need friends who can love and respect me *while* I talk about these things, *while* I grieve for my losses, as well as celebrating my triumphs and the things and people that bring me joy.

I can still help people. Tonight, I started work on helping a friend with no insurance to get access to the meds she needs.

It's something I know how to do. It's something I can give.

And that's the kind of thing that I want and need the space to share, too.

*YOU GUYS* are fucking awesome. The friends who stayed with me, and the friends who joined me along this journey -- you are literal lifesavers, and I love you all.

But I've also heard all those hurtful things that Amanda talks about, sometimes from people I thought would understand, people who I'd been there for.

Having this space to express myself means so much to me -- but it's important for everyone to know that *every* person who opens up about their disability or pain or chronic illness -- we have all had people try to silence us, because our stories make some people in our lives uncomfortable.

Sometimes, it's someone as close and trusted as a partner, a parent, a child, a best friend.

So -- when you listen to me, and you still care, and you don't disengage or bitch behind my back about how I won't shut up about my boring struggle with disability -- you're counteracting those silencers, healing those betrayals.

You're making me (and everyone else fighting this same battle) remember that we didn't lose our humanity by acquiring (or being born with) an illness or disability.

You matter, so very much.

Thank you. <3

Comments

[ashbet]

(As an aside -- I wasn't *intentionally* quoting Dio when I wrote that, but the image I got in response was too perfect not to share!)

The tiger-riding imagery is my own way of visualizing my struggle with disability and depression -- but the image is very much an amalgam of various literary and musical metaphors that I've encountered in the course of my life :)

-- A, who has heard that song so many times that it probably wore a groove in my subconscious ;)

[elialshadowpine]

Anyone who would bitch behind someone's back about them spending too much time on social media really should learn to STFU. I hate the assumption that if you're on social media, you must not be doing anything productive. It doesn't matter, really, if you're doing something productive or not, but the idea that it's one or the other is a problem. For instance, while I have a lot of difficulty right now with my writing (and I have been published, and made decent enough money; not enough to live by but enough to get things we needed but couldn't otherwise afford, enough to help with the gaps), when I am actively writing, I'm multi-focusing. It's part of my ADD. Either I have no focus, or I'm focusing on eleventy billion things.

That means that in the same 15 minutes I wrote 1k words, I probably also posted on FB, commented on LJ, or chatted with people in IM/writer's chats. But people will choose to see the FB and LJ posts and comments and the time spent chatting -- and discount the actual productive things I did. I've had a... person... I don't have a word strong enough... comment behind my back when I was going through a flare, hanging out in our writer's chat and cheering other people on, but distracting myself from the pain by playing WoW, that I was a gaming addict and addicted to prescription medication, and I needed to get off that stuff and back to my writing. I also found out that when I brought another friend in who writes CRAZY fast (but needs TONS of editing), that she was talking to others behind his back that he was lying about his word counts. He's also disabled, btw. Part of it was "no REAL disabled person could write that much."

For him, writing is how he distracts from pain. When he's banging out words like a lunatic (to quote him directly), he doesn't feel the pain. It's been a bit of a struggle between us, because for the longest time, he couldn't "get" that I have to get past the pain in order to write, that writing doesn't put me into a headspace where I don't feel pain. I wish like hell it did and I'm jealous as fuck it works that way for him. But, he got shit for it because of his disability. Oh, and heaven help if he was writing a long LJ post. That's just wasting your time.

This ... person ... kept doing so much backstabbing that it broke the writer's group that had held together for almost a decade. I don't have much contact with most of them anymore. I have a lovely group of ladies now who are supportive and don't backstab. And who don't give a shit if I'm in the chat and posting on FB for awhile instead of writing. They're like, "Duh, you need a break," and don't care if there are days that I'm just there to cheer people on because I hurt too much to do anything more than social media or playing video games. (Dragon Age is lovely for disappearing into a video game; it's so much like an interactive fantasy novel.)

BTW, this toxic person I keep talking about? Let's just say there's more than a bit of overlap in personality traits and actions with Josh's new thing. That's why I was so suspicious of her, because she kept pinging my radar for T's behavior. The only difference I've seen is I don't think T has DID, at least last I knew. Although if she thought it'd get her sympathy points, she'd probably fake it. Yes, she's that kind of person.

Um. I got off on my own rant there......

[ashbet]

No, that's a reasonable red-flag ping!

It's so ugly when people are negative about the process that other creative people need to create.

It's WILDLY individual, it's dependent on ability to multitask/deal with distractions (Lucy writes while gaming and making dinner, whereas Adrian immures himself in his tower/office/bedroom and needs quiet and as few distractions as possible), the presence of children and/or partners makes a difference, and the author's physical and mental health is crucial!!

There are a million different ways to Do It Right, and the only person who gets to decide how you work on this stuff is YOU.

-- A <3

[praxedes-osaka.livejournal.com]

That's awful, for anyone to judge anyone else's creative process or output and then to make nasty comments behind their backs too. Everyone's got their own way of writing, there's no correct way of doing it. (My best and most prolific writing comes on my high emotional pain and/or high autism days. I can barely string two words together verbally on those days, but put me in front of a keyboard, and it might end up being a 20K word day. Thank god(s) for spellcheck, because my dysgraphia is high on those days too. DX And then I might not write for days on end.)

And some days we just can manage to be cheerleaders and friends, and that's good too, because someone is always going to need a cheerleader. :)

[ashenphoenix.livejournal.com]

I'd seen your repost on fb, but kept myself from an almost fangirlish "you said everything I always do, but you did it so much BETTER" - mostly because AFAIK, I don't know the writer.
And then I read your response, and as always am just amazed by how you manage to keep fighting. I find that inspirational - and I just don't use that phrase with a straight face more than once or twice a year!
I'm grateful that you do publicly repost things like this, because there are still so many people out there looking for their way to cope.

I hope Convergence helped you get back on top of the tiger again :)

[dark-phoenix54.livejournal.com]

I don't get it. Why doesn't this person just scroll on by, or unfriend?!? Why are they spending *their* time posting about someone else? *shakes head*

I really like what you have written. I think you've spoken for a lot of us who are isolated by our illnesses.

[redbird]

You're welcome.

Also, when I find myself tempted to scroll past, it's usually someone who mostly talks about other things but live-tweets a TV program every week.

A lot of people have a single topic they talk about a lot; your life, including the ways you deal with disability and bureaucracy, interests me more than a lot of "this is how my customers were annoying today" or "let me tell you all about the Seahawks, and how much we care about them." (I am grateful that my friend supergee uses cut tags for his football posts.)

One of the useful things about social media, for me, is that I can be there for my friends, and they for me, when we're up to it, and quietly take breaks when I need to. Once in a while I will post, or see someone else posting, something like "I was just offline for a couple of weeks, if there's anything you need me to know, please comment with it here."

[bauhausfrau.livejournal.com]

For so many disabled people, of all different types, social media is a lifesaver. People who gripe about such things are lucky enough to have not had much physical hardship in their life and self centered enough to never have taken the time to imagine what life for other people might be like.

Deep hugs hon.

[eseme]

Thank you for posting medical stuff. THANK YOU. Between you, other people who post about thyroid issues, and an ex with fibro, I feel that I am in a better place to help the Angel, who has a host of medical problems including the fact that his body is trying to kill his thyroid.

It helps, a lot, to be aware of disability, that it can affect anyone, and to have some idea (even a very small one) of what someone may go through on a daily basis. None of us know if we may be disabled at some point, or have a loved one who is.

If you and others didn't post about it, I would never have heard of the spoon theory, and I would not have the empathy that I do now. I am by no means perfect, and I still say or do things that are insensitive or unhelpful, but I know I would be far, far worse were it not for you and others talking about their day to day lives.

So thank you, and please keep sharing as much as you want to - the good, the bad, the doll photos, the cat stories.... I appreciate it all.

[praxedes-osaka.livejournal.com]

I love you and appreciate you so much for posting this.

I don't have much in the way of chronic pain, thank deity of your choice right here, except for the lax joint problems, but I do have a life-long condition with fun co-morbidities that is isolating and widely misunderstood, and having the internet network of friends is my only way of feeling connected and semi-human, since face-to-face interactions are so incredibly hard for me. I don't need to be judged or belittled for the things I truly cannot control, and that posting a lot is the best way for me to work through stress or sadness, or to send up little signal flares that yes, I'm still here and functioning as some sort of sentient being.

And just knowing that there are people who hear me is a huge thing.

(As an aside, I don't get to ride tigers. I always feel like on my days on the autism spectrum where the slider is closer to the "low-functional" end, it's not so much that I'm low-functioning, but that I'm functioning on a different entire level. On those days, I always feel like I've morphed into some kind of bizarre, chitinous, well-meaning, but quintessentially *not human* bug-type alien. You know, gigantic, pincsered, antennae twitching anxiously, very friendly but completely unsure how to best approach a human so as not to cause alarm or a misunderstanding or World War III.)

[ashbet]

*hugs* That makes a lot of sense.

I love you even when you're having Kafka days!! <3

(And I appreciate that YOU, and other friends who are on the spectrum, post about what living with autism is like -- because you've helped make me a better friend to my autistic friends, and they've helped me be a better friend to you.)

I also know that autistic people talking about their own experience can be immensely helpful to and parents and loved ones of people on the spectrum, because understanding and empathy and first-hand information is SO important.

*MOOOOSH*

<3!

[(Anonymous)]

Amen and hallelujah. It's important to trek tote truth not only because it's your story but because others read it and realize they're not alone. I'm so grateful knowing that others are out there who have traveled similar paths to what I am now walking. It gives me strength on dark days. <3

[beheretinnitus.livejournal.com]

Everybody deserves to have "that space", and no one has your permission to silence you.

I am bipolar. I know there are people who squirm when I talk about it. If that's how they want to waste their time, I'm not inclined to stop them nor am I inclined to listen. Those are the people that I hide or unfollow. They don't earn the right to what I share.

Keep on keepin' on.

[fallconsmate.livejournal.com]

i'm like you. i'm not socializing much outside the house. i've JUST gotten into hanging out with the neighbors playing cards and such. and that's cool, plus they're happy to have me there. not to mention, i can get little kid hugs. :D

but. being chronically ill takes up most of my life. so i will defend to the end that you can say what YOU want to here. this is your "living room", so to speak. it's your choice what to say here.

and even if i disagree with something you say, you still have the right to say it. fuck the naysayers.

[fallconsmate.livejournal.com]

i'm like you. i'm not socializing much outside the house. i've JUST gotten into hanging out with the neighbors playing cards and such. and that's cool, plus they're happy to have me there. not to mention, i can get little kid hugs. :D

but. being chronically ill takes up most of my life. so i will defend to the end that you can say what YOU want to here. this is your "living room", so to speak. it's your choice what to say here.

and even if i disagree with something you say, you still have the right to say it. fuck the naysayers.