talking with a stranger . . .

[rootofnewt]

I fell into a conversation with some local shopowners, as I often do in our small town. They run one of the local birding shops. I was stocking up on suet cakes and buying a couple small feeder items. Another customer asked what birds I see and I laughed and said that I'm not seeing too many, as birds get up much earlier than I do.

The shopkeeper then introduced me to the other customer. I recognized the name of a prominent pyschiatrist/writer, but we did the whole cordial greeting thing. She began chatting to the shopkeeper and I wandered back to look at more items. The other shopkeeper came up to greet me--I always enjoy chatting with them. Then I noticed that the other customer was carrying two books on the Chechen conflict. I told her that I enjoyed both books and that I hoped she found them interesting.

She was shocked that I'd read them. I'm not sure why. She asked why I'd read such depressing fare and we discussed areas of interest and education--she's giving lectures on the Beslan situation, I just keep up with the region out of interest. She then asked what I'm doing with the degree and I cheerfully informed her that I sleep. I'm very casual when perfect strangers ask what I do--these days, people always ask where you studied, why you moved to X, where you work. I typically answer such questions with noncomittal and jovial answers: I studied in DC, I like the food, I'm a poodle wrangler.

Anyhow, she started going off about how I needed a job so I didn't have to sleep all the time. Needless to say, I just smiled and said, "I have chronic fatigue syndrome". This news stopped her in her tracks. She looked shellshocked. She asked how one gets over it. "You don't. You learn to cope."

This is where she went off on a pity streak a mile wide--it continued as we left the store and went to our respective cars, despite my telling her that I'm happy and fine.

I do not need pity.

Yes, my life has changed. Former hopes, dreams, aspirations--all gone. You know what, though, if I can cope with that, so can a perfect stranger. Sure, there's no Peace Corps, no Foreign Service, no grad school. Heck, half the time, there's no dinner service. That's okay.

I have a good wonderful life. My beloved partner in life adores me--or at least puts up with me and even seems to be fond of me. I have a poodle who contorts himself into wacky positions when he sleeps on the couch. I can go for hikes in the mountains and take pictures of wildflowers I'd have never seen if I'd not fallen ill.

I have friends. I have tomatoes which grow in my garden. I have the remarkable ability to throw together a casserole on a minute's notice.

Yes, I'm in physical pain every single moment. Yes, I have overwhelming fatigue. It's true, I can't have a fulfilling career, but a career is not required to live a full life. Nor is good health. Heck, I don't even need a dayplanner and I survive just fine.

My illness may limit certain aspects of my life, but it does not limit me.

I do not need pity. The fact that a stranger can't comprehend how a young woman can be happy while living with a chronic illness is not my problem, it's hers. And I feel sorry for her. She was horrified at the thought of spending one's day watching birds out the window or taking pictures of native wildflowers with a loved one. She can't comprehend how I can be content with the life I have . . . she doesn't realize the value of the small things. Sometimes, the small things are larger than we think.

Comments

[jeshyr]

I don't think that I have ME because I need to learn something, or that ME is a "blessing in disguise" because I have learned something... but appreciating the small stuff is the most important thing that I have learned through ME.

r

[xiane.livejournal.com]

I agree with you, but at least she believed you and didn't try to argue you into the idea that you *might* be able to work, it couldn't possibly be as bad as to have to stay home. :)

I've never understood why people have this need to push others into the definition of "good life" that they hold. To me, your pain is terrible [from what I can understand, being an outsider] but your life is rich in other areas. If nothing else, you could be an inspiration for those who think that their lives are so bad off - you have a great husband and full life, all the while coping with an illness that most people can't comprehend.

I'm just sad I'm not around right now - we could be jobless and shiftless together ;)

[ashbet]

*nodnod*

I get SO DAMN ANGRY when someone starts strategizing, "Well, maybe you could do _x_!!" No, right now it's all I can do to get through the day, thank you, and getting to the post office on a regular basis is practically beyond me. NO, I cannot do _x_, I can't fucking make TOAST some days.

I'm glad that you've made peace, Jos -- I don't see it as any kind of surrender, you've made a good life for yourself and you've made necessary changes to your life plans because of your physical health. You haven't given in to illness, you've worked around it.

I'm still in the anger stage, heh -- and I keep hoping that I'll find some solution that will let me go back to paying work, because I'm *not* content at home, I make a really lousy housewife, and I really *enjoyed* the work that I did. But, yeah -- right now, I'm in a holding pattern trying to figure out what I can do to get my pain to a manageable level so that I can go back to having at least some part of the type of life that I want (at least I want mobility and to be able to have a decent social life, even if I can't work!)

I can't quite understand why a *psychiatrist* couldn't get her head around the concept of someone being happy with their home and interior life . . . has she forgotten that life used to be centered much more around the home? It's only in the last hundred years that it's even been *conceivable* that people would commute to work, etc. -- why do they think that humans would all have universally adapted to a lifestyle that isn't at all what we're made for?

Anyway. **hugs**

-- A <3<3

[burnbright.livejournal.com]

and this person is a psychiatrist? that's a little unsettling. while i know it's not the case, i'd like to think of mental health professionals having a broader realm of thinking than career = happiness or whatever nonsense she was thinking.

i wish that i had more time for the small things...

[dwolfe.livejournal.com]

I do find one thing about an ongoing illness fun.

I find EVERYTHING a target of humor. I think, with wit and the right twist, anything can be funny.

Occasionally I make a cancer joke and someone gets all huffy like "my grandma died of cancer!" and I start by telling them to lighten up. If they still freak out, i tear up a little and say "It's how I cope."... They then normally get all guilt ridden...then I laugh at them.

"Healthy" people are funny. They don't get it. We only get one ride. Making the best of it, happiness, and a good laugh have nothing to do with disease or mortality, they are life, and life is good.

The other one is if they pity me. If someone is like "OMG, I'm so sorry for you." I'll mirror what they say right back at them.

Then if they get confused, I'll just pick a real quick flaw and talk about how horrible it must be to live with it.

Mean? Yes. Hilarious? Yes.

Pity da fool!

[redzshadow.livejournal.com]

People! Careers are over rated anyway. I don't want one. I think real pain sometimes pushes us in the right direction for our lives. I know mine has. If it wasn't for that stupid fall I would have never known what my body was doing. Of course I wouldn't be in pain all the time either....but the point is look where I am now. I am happy with what I am doing and that is that. You are happy with your life and that is that. People need to relax and realize that their goals are not the goals of everyone.

And Mr. T was right, she need not pity you but Pity Da Fool!

[heido.livejournal.com]

I really needed to see this. Thanks. :) It is just a *part* of me. It is not me. Hard to remember.

[vito-excalibur.livejournal.com]

You had me at "Anyhow, she started going off about how I needed a job so I didn't have to sleep all the time." Who the hell would deliver a judgment like that to a perfect stranger?

I'll tell you something - there are things I envy about your life. Every time I've had a grinding day at work & I come home & read LJ & you've posted about spending the day in the mountains...yeah. Obviously it's not good to have the free day because of the chronic disease, but...yeah, why completely ignore the free day? Stupid stranger.

[glove-puppet.livejournal.com]

"Who the hell would deliver a judgment like that to a perfect stranger? "

You'd be surprised. A friend of mine often gets told that getting a job will "take her mind off it". People can be distressingly f'ing rude.

[dwolfe.livejournal.com]

They are mostly just trying to help.

They don't understand. It is just ignorance of what it is like. It isn't malace, it is a lot of fear with an attempt at empathy. The people who say "get the f**k outta my way cripple" are rude. I'd much rather have uninformed empathy.

The reason I approach it with humor is to show them it's no big deal.

[seeliespright.livejournal.com]

For years, my family thought my mom was making her pain up and that she _could_ in fact work, but chose no to do so because she was lazy.

If your family does that... I'm not so surprised. :o/

[elizebethjoy.livejournal.com]

You're cool.

[bedbugsbite.livejournal.com]

:-)
You just made me really happy.
Thanks.

[datagoddess.livejournal.com]

*shakes head*

You didn't fit into her defined slot - how dare you! To have a happy life, to not be all depressed and held back by your limitations, but to live the way you do, enjoying life and being content with it - OMG. You're not supposed to do that!

I guess she thinks you should define yourself by your limitations. I'd bet that's how she defines herself - what a sad way to live.

[hnybny.livejournal.com]

I think you can guess that what you said really resonates with me. I hate pity and I agree with what dwolfe said, "Healthy people are funny."
soaring_phoenix was also right on the money with "I guess she thinks you should define yourself by your limitations. I'd bet that's how she defines herself - what a sad way to live."

High achievers often see us as "broken" and if we're "unfixable" we're a living reminder of what they can lose. Furthermore, if we're not depressed or despondent over it, we must be deluded.

Luckily, for at least some of us, chronic illness doesn't mean chronic self pity.

[sophy.livejournal.com]

And you know, it's prevailing ideas like that about needing a career and physical health to be happy with life that make those of us who have gotten sucked into that kind of thinking and get struck by illness feel depressed with our lives. I'm still struggling with the idea that it's okay for me to be happy and content without working out in the world. It's painful for me, in a lot of ways, not to be able to do that.
But if more people accepted that everyone has different limitations and abilities and that each and every one of those people can have fulfilling lives doing what they're able to - it would be a lot easier for people like me to adjust.

It's awesome to have you as a role model in this area. So thank you for that.
(And also - happy late birthday - I forgot to comment about that before!)

[nadyezhda.livejournal.com]

I'm curious to know what books she was reading to inform herself about the conflict. I'm also curious to know who she is (since your interests and mine overlap, and I want to know if she has any authority, so to say, to speak on the Beslan situation...)

The second question is one you might not feel comfortable answering...

[krasota.livejournal.com]

Today, I can't remember which books she was reading. I think maybe Meier's book and the Politkovskaya book.

She speaks on trauma, childhood stress/trauma, and the like. She's certainly qualified for the type of lecture she's giving on the psychosocial impact of the Beslan situation. She's not exceptionally well versed in the geopolitical history of the conflict--that's what she was reading up on.

[nadyezhda.livejournal.com]

Hmm, those are good. Good for her for trying to find out more. I met Politkovskaya a few years ago- you'd never think that someone as quiet as she is (and fragile-looking) could have done the things she's done, been the places she's been.

People always amaze me with the things they CAN do, despite (in spite?) of whatever else is on their plate. That applies to you too. ;)

[dizzyblind.livejournal.com]

I hear you on that. And hey, I wish I didn't have to work. haha. I was just writing in my journal the other day, even though I act like I'm so independant and I want to take care of myself, the truth is that I wish I could just be a housewife that stayed home, cooked, cleaned and looked after the kids. lol. Sad thing is, that will never happen cause I'll never trust anyone enough to take care of me. Besides that, I would love to be able to get to sleep because I'm ALWAYS tired and run down too. I never feel right if I'm up for more than 12 hours anyways. I can sleep anywhere from 5 hours to 15 and I will be tired. It doesn't matter. I think it would help my eczema though to not work so much. It would be so nice to see my hands semi-normal again. At this point that is probably impossible though with all of the scarring I have. blah.
That is life though right.

[seeliespright.livejournal.com]

My illness may limit certain aspects of my life, but it does not limit me.

Yesyesyes, I totally feel that. Things have been getting harder and harder lately and I find I can't do many things I'd like to do. Sometimes, I feel all that will remain is me - my core - my interests and passions. And somehow, taking just that, we have to go forward as the days pass, hour by hour, and do what we can.

Fuck those who can't understand. As you said, it's their problem, not ours. :o

[exxoblivion.livejournal.com]

It's funny that you had this conversation and the answers you gave. I give the same answers and whatnot. For some reason you get those people that don't understand what your problem(s) are at all, and have the belief that it's all in your head or something equally ignorant.
I find it funny that these people even say things like that, I mean if that was the case you'd have to be a fucking moron not to have thought of that, btu alas that's not the case. I guess you can't blame them if they only have a vauge idea of what you're talking about.. Sorry rambling..

[crazypumpkin.livejournal.com]

I made an appointment with Dr. Baraniuk today. He's still at Georgetown. Do you want me to tell them you recommended me? If so, please email me your actual name (alissa.susanne@gmail.com)
Otherwise, thank you for the recommendation. Its weird when you hope that they do find something wrong with you, so that you can put a label on it.