Illusions

[cjsmith]

Me: My feet hurt.
Somebody Else: It might go away. Any day now it could vanish just the way it came.

That still makes me angry, but y'know what? I can also see the flip side to it, a little bit.

Yes, it would still be mindbogglingly stupid for me to plan my life around the hope that my feet will suddenly heal. Therein lies a recipe for putting myself "on hold" until my grave, waiting until I win the (medical) lottery instead of living now.

Yes, it's still mindbogglingly insensitive of Somebody Else to pretend that this is a temporary problem and thus hugely, quantitatively and qualitatively, easier to deal with than what I am actually facing.

Yes, I still feel like I'm not heard.

Yes, I still feel like I'm being called a liar, and yes, I still hate being called a liar.

But y'know what? Somebody Else might really kinda need their illusions. Denial can be a gift. I can choose to give the gift of not trying to burst their bubble.

The day will come when I'm sufficiently less angry that I can give that gift.

Comments

[quasigeostrophy.livejournal.com]

Somebody Else: It might go away. Any day now it could vanish just the way it came.

Oy. Yeah, I understand being angry at that. My first reaction upon reading it was to wonder if this person was aware of your history of dealing with it or just learning of it.

[cjsmith.livejournal.com]

Oh, "aware" but clueless, if that makes sense. None so blind as will not see.

I'm a little bit less angry when I realize what might motivate it.

[dcart.livejournal.com]

Without any other context, I was thinking maybe it's a hamfisted, but sincere attempt at trying to offer you some hope. Admittedly, a really clueless way of doing it. But I don't know the person or what they know of you and your history.

[cjsmith.livejournal.com]

Yeah, people new to the concept do that too, and oddly enough, I kinda sorta appreciate the gesture (counterfactual though it is). Weird, huh? :-)

[datagoddess.livejournal.com]

*nod*

I get that way when someone thinks that asthma is no big deal for me.

Um, yeah.

I'll be right behind you with the Bat 'O Clue.

[cjsmith.livejournal.com]

when someone thinks that asthma is no big deal for me

HAHAHAHA yeah right. Can you hear the bitter tone to that laugh? Hahahahaha.

Angry. Oh yes sirree. But less angry when I can see a tiny bit of what might be behind it.

[zpdiduda.livejournal.com]

I would abandon the Clue Bat here -- too subtle -- in favor of smacking Someone upside the head with a dead trout.

[cjsmith.livejournal.com]

A not fresh dead trout. ;-)

[sharya.livejournal.com]

I think you probably hit the nail right on the head there. Not knowing to whom you are referring, Somebody Else really might need the illusions. When I worked in the rehab centre, there were an amazing number of people that lived in this world of "but maybe" and "what if". Any normal person could tell that "maybe" and "what if" were a long shot akin to winning the lottery, but these people had so little in the way of coping skills, that this faint hope was what got them through the day.

It seriously complicated their rehab, let me tell you!

But yes, you said it right. It's more a statement of their ability to handle things than it's a statement about their opinion of you.

[cjsmith.livejournal.com]

Denial's got a bad rap, considering how useful it is sometimes. Maybe it's a crutch, but then again you won't see me disdaining a crutch if I break my ankle!

[plymouth.livejournal.com]

Someone needing to have illusions about their own pain? Sure, that I understand. But why would they need to have those illusions about SOMEONE ELSE'S pain? That just seems weird to me.

[sharya.livejournal.com]

Absolutely. Haven't you ever seen a spouse ever be in denial over their spouse's condition? Or other family member? It's very common.

[cjsmith.livejournal.com]

What sharya said, and also some people have a desperate deep-seated need to see the universe as a Nice Place. It's almost sad.

[airporter.livejournal.com]

Someone so good-natured and innocent that the thought of another's pain and hopelessness about same sends them into a dizzying spiral of questioning that they lack the skills to break or adjust to maybe?

While I've only met one person who was truly that innocent, I think many of us get caught in this kind of situation occasionally. We don't know how to deal, so we deny.

[redgrrl.livejournal.com]

Sort of related, but hopefully not offensive to you -- have you seen the documentary "Murderball"? The attitude of the main character about the injury that put him in a wheelchair was "Fuck it -- I'm going to find a way to do what I want to do." It was kind of a cool antidote to the usual saintly attitudes some seem to expect from someone who has suffered a physical limitation -- especially when one of his buddies says on camera that the guy was an asshole before the accident, and hasn't changed since. :)

Anyway, thought the movie might be useful in at least vicariously living through that attitude or escaping the feelings of helplessness or hopelessness.

[cjsmith.livejournal.com]

Yeah, I feel like such a wimp sometimes because the ONLY thing that is limiting me is pain. That's it. Everything works just fine, except that if I use my feet, they hurt. Why can't I push through that and say "Fuck it -- I'm going to find a way to do what I want to do"?

[redgrrl.livejournal.com]

Hey, pain is a physical limitation! I get the feeling from your comment that you don't equte pain with, for example, missing a limb. It's not a lesser limitation, it's real and it does limit you in ways that are out of your control. I mean, do you want to live with the pain? If so, I guess you can "do what you want" until your body or spirit give out completely from the debilitation ever present pain. That wouldn't be an option for me -- I don't deal with pain well -- it would be on my mind 100% of the time and I would never choose that if there were another route.

IS there another route -- another way that you can satisfy your needs/desires for physical activity without incurring unbearable amounts of pain?

These guys in "Murderball" -- they can't play competitive sports the way they used to, so they play a modified version of a highly physical and competitive sport. It's really kind of inspiring, though the kind of sport they play and the attitude most of the players and coaches display are anathema to me.

[cjsmith.livejournal.com]

Yeah, I guess with pain I see myself as having a choice: pain OR don't use the feet. The guy in "Murderball" (and, I suspect, many if not most wheelchair users) don't have that choice because they simply CANNOT use the feet/legs/whatever.

It is possible, though so far the neurologist seems to think it unlikely, that lots of use of my feet could cause my condition to get worse. I don't really have deterioration to worry about as a consequence of doing what I want.

So yeah, it does seem different to me. I wonder if I'm unconsciously parroting a cultural attitude toward physical pain -- that it "doesn't count" somehow and should be something we can work through. I suppose all the Mighty Manly Action Heroes (some of them female these days) in movies and such certainly tell us that.

Me, when I hurt, I turn into a jerk. Serious asshole territory here. At the very least I'd need to revamp my emotional landscape to the point that I didn't react that way, 'cause no way do I want that to be my life.

And then I start to feel like a bit of a wimp 'cause there are people with chronic unrelenting pain who cannot simply "quit doing whatever" to make the pain decrease. I have it so easy in a lot of ways.

Soapbox

[airporter.livejournal.com]

'scuse me? the ONLY thing that is limiting me is pain? From my own experience, the body in pain can be far more debilitated than one that's damaged but no longer in pain. The latter is limited in some form or fashion - as with the murderball gents - but the mind can be unaffected (see asshole above.)

Pain strips away who you are very effectively until life is a measure of just that and nothing else. If you manage to overcome some or all of its effects, have a job and/or a life, you've done bloody well. That is pushing through it.

And most worthy of respect and admiration. Not that you've expressed a desire for it. I'm just sayin'.

Re: Soapbox

[cjsmith.livejournal.com]

Thank you for your soapbox. I need a dose of perspective from time to time, and that's just what this gives me.

Pain is such a weird thing. On the one hand, everything (except the sensing system) is in my case completely functional. The muscles work, the joints are mobile, everything is attached that needs to be, proprioception is correct, balance is unimpaired, etc etc. So I "can" technically do stuff. But on the other hand, you're absolutely correct that pain has an enormous effect. I remember reading an article claiming that some study showed chronic pain ages the brain by 10 to 20 years (measured by shrinkage, compared to normal aging) and causes brain chemistry changes as well (affecting decision-making). That's pretty darn profound.

The more I noodle on this, the more I realize that I've internalized a few too many action-hero messages.

Re: Soapbox

[airporter.livejournal.com]

Romanticized those men-in-tights too, huh? It's taken me two decades and more to realize I can just be me instead of trying to have everything the way I perceive other people (supermen) do. The only baseline to my happiness and acceptance of my pain levels is right here in this skull. The one that cries 'oh no, not again' at every twinge that repeats more than twice, and says to keep meds on hand at all times, even when they've not been needed in over a year.

Yes, I'm lucky. I'm one of those whose pain cycles up and down, and can sometimes be managed to stay down during the last four or five years. Regrettably, that doesn't help me forget the first twenty-years. Can you say paranoid?

Pain envelopes everything. The world is fuzzy, and those who care about you have little chance of understanding your pain (or you theirs.) Comparing is pointless, yet each of us does it: how come she appears so strong when I'm such a wimp? How come he's recovered so much more quickly? How come she's recovered? The questions are all there, and but for potential insight into how we each view pain are fruitlessly examined.

It's a wholly personal thing and some deal differently than others. I've never understood someone who has a headache and does nothing (ice, water, heat, pills, whatever) to alleviate it. That level of pain - bad enough to notice, but not so much as to require doing something about - is simply something I don't get. In either sense.

Re: Soapbox

[cjsmith.livejournal.com]

Men in tights, lean women carrying space blasters, whatever icon of the day is used the message is there: People To Emulate are not stopped by mere pain. Ever. Or the universe wouldn't get saved.

I've never understood someone who has a headache and does nothing (ice, water, heat, pills, whatever) to alleviate it.

Reading that, I'm laughing, for a related tangent. I got to talking last night with a woman I believe to be certifiably crazy. She "doesn't believe in" pain pills (although she does "believe in" a whole lot of unproven pseudoscientific bunk, so reality doesn't truly impinge here). Now she's had back trouble and sciatica -- and dear Lord she's in trouble. Her long-held principle is colliding with a reality that won't go away. Just a few sentences after the Doesn't Believe In statement, she said she's never before HAD pain. Well then! I was sooooooooo good. I didn't laugh in her face. How can someone in her late sixties or early seventies still be so damn NAIVE?