Hi Everyone,
I normally don't vent often... but I'm about to break if I don't. Some people I know think I don't do anything but sit around all day, and then they joke and laugh about it. Part of the problem is because I like using the computer. Yes I admit I enjoy using my computer often, but I also use it for everything that I can't easily do physically.

Using the computer is NOT the only thing I do though. I'll do anything anyone asks me to do (as long as I am physically able to do it), and I have always been that way, and I still have alot of that left in me.

Everyone I know, knows that I leave the apartment many times a week. It's a long very long walk to the car for someone who is disabled too, especially for someone who was literally unable to walk a few years ago, so they can't say I am not getting any exercise. I don't technically exercise in front of people because of their remarks though... "Pfft, Is that all you can do?", "What good is doing that if you sit around all day?". "Hahaha, James actually got up to get himself something to drink?"

There are many things that I can't do anymore because of my AS, and I even have days where I don't feel like doing anything, but that doesn't mean I don't do anything at all.

Some people think that because I am using the computer when they call or stop by, it automatically means I don't do anything else. One of the people guilty of this calls me over to their house several times a week. If I'm 'that' lazy then how is it I am able to visit this person just because they need company? What's even more frustrating for me is this person is trying for disability but still doesn't understand what it is like for me and my disability.

Maybe it's because I don't drive anywhere, uh... maybe it's because I *can't* drive. It sometimes comes with the territory of being disabled. Just the same, I can't walk around in the stores all day like everyone else, so I won't. If I did I would need my wheelchair. When and If I have a little extra cash for myself, you bet I will be in the store picking out something for myself though. I'm not about to put myself in agony just because someone else likes to wander around the stores.

I think sometimes people feel threatened by my inabilities.

Thanks for listening...
Take care,
James

i think that last sentence is close to what i was thinking.

i find it is insecure people that put others down; somehow they think it makes them feel better about themselves, superior to others. its not really so much about you as about them. though of course those kinds of jabs certainly hurt us, make us feel bad.

so, for the record, i haven't even met you in person and i think you're absolutely terrific! and amazing! and i mean that!
try your hardest to ignore those kinds of people and comments and come here and share as you just did when you need to.

I know what you mean James! Even though I am a mild AS sufferer I am a lot worse than a healthy 33 year-old. People look at me strange when I say I can't do something. I always get "You're young you can handle it!" or "You look fine!". Their judgments are grounded in ignorance. I just try to ignore them. Hard to do though.

Craig

Hi Craig,
It has gotten easier over time for me to ignore the occasional rude comments and jabs, and I know that some comments I get aren't intended to be hurtful, but for one person in particular it seems the more I try to ignore it the more insensitive the comments get. The comments from this person have already more or less turned into complaints about me. Apparently, I give the person something to complain about. The other other 2 people and their comments I don't mind as much because I know they're just trying to be funny, but they aren't very good at it.

Take care,
James.

Aww thanks Sue. Right back at ya.
I haven't quite yet figured out if this person is that insecure, or if the person is that insensitive to everyone... or both. Ignoring that person's comments isn't really working out as I had hoped, so sooner or later I'm going to have to say something about it. I have a feeling that saying something about it might cause some turbulence in friendships though, not just our friendship, but for the people around us too.

Take care,
James

Well, it looks like I have more important things on my mind now. We just found out that my wife's car was broken into and so far all we know is the car's cd player was stolen. The police are on their way now. The car's passenger door can't be locked so I'm assuming that's how they got in, and the cd player wasn't worth anything, but still.

Hi James,
Sorry your going through this I can understand you venting I don't have much of a problem with friends but its strange what you say about the one trying to claim Disability.I have a neighbour who can try and be funny and claims he has a bad back. I was talking to him and my other neighbour who is reg blind the other day and said how I had managed to walk up this slight hill by ours with scooby and not get out of breath now I don't smoke. To which he said that isn't fair I couldn't do that and I'm not Disabled. Made me angry and I replied hey I didn't say I wasn't in pain did I. Some people seem to think you should be a cabbage if your Disabled and others think your Just a lazy [*bleep*] who cant be bothered. You cant win mate and I know its very hard to ignore.

i say to people like that i will trade shoes with you anytime.they say to me(but mostly behind my back)you still work in the yard,go to the store,walk the dogs,and look dam fine doing it(HAHA)than why can't you work.there are a lot of days i have a hard time even walking like the last week or so.they can kiss my skinny white #%@,if they were really your friends they would under stand.

Tommy P.

P.S. i will buy..lets go for a few beers!!!

Yes agree with you Tommy I would love a drink with you but cant afford the bus fare.

Hi Tommy P,
What is that you are drinking in the picture? I see you are in Cleveland. I live in a small town west of Toledo.
Take care,
James.

Hi Kevin,
Unfortunately, That's the same way it is over here too. I get some questions like "If you want to work what is stopping you from getting a job?". Wanting to work and being able to work are 2 different things.

We should put together a list of the unusual questions that people ask us.

Hope you're doing well
Take care,
James

James, I think that "list" is a great idea. Actually I think we should write a book. This post of yours hits home to just about every AS'er. This is a good discussion for everyone. I hope more find your post here. In todays society people are so wrapped up in themselves, they don't know how to truely love their fellow man anymore. They don't know how to show true love, compassion or take the time to really get to know a person with a chronic disease. It takes too much energy for them to take the time. I doesn't fit into their busy "me" world so they condem those of us who struggle everyday hoping we will disappear. This is their problem not ours. People who treat us this way are deeply troubled and are not capable of true compassion. It hurts to be viewed or treated this way but just keep reminding yourself that this is their problem not yours. We have this real desire to be accepted for who we are and want others to see us as the strong willed person adapting and continuing to live through the awful progressive changes we have to endure. Insted we continually get hit with unexcepting personalities that only add to our struggle. James, just remember it is not others that we need to please, it is ourselves. I could go on with more, but I will stop here.
Be gentle with yourself
Cindy

That's very well put Cindy and very accurate.

Hi James
I think the situation with these "friends" says way more about them than it does about you
You strike me as a really good guy, James, who thinks about other people and does not want to make trouble with anyone.
If I were you I would answer these jibes by saying - yeah fine my disability gets me out of doing the chores! (that is said sarcastically btw!) but what about the things I want to do, don't you think I would do those things if I could!
Give these guys a wide-berth for a bit, perhaps they might find something more productive to do with THEIR time!!!

Bottom line, try not to take any of their comments on board because as we all know THEY ARE NOT TRUE - you cope with your AS fantastically well are travelling a difficult road and making the best of it. Kudos to you for that

Hey James i don't remember it was from last March in Mexico,me and my wife(29 years in July)shots and beers to many to count.my daughter went to bowling green.

Tommy P.

P.S.CLEVELAND ROCKS!!!

OH and Kevin THE BAD BOY KICK AS M/C don't need no stinking bus


Tommy P.


P.S.if it doesn't hurt it must be good

Well you will need some sort of transport to get you around wont you in your delicate state,

Hi Tinkerbell,
Thanks for your reply too.
Too bad it can't get me out of all of the chores lol. I tried to take a week off of being around the usual crowd and it helped to relieve a lot of steam.
Take care,
James

Great news! So glad to hear it

James, honestly, people can be such idiots. I'm sorry you have someone in your life that makes you feel this way. Personally, if you feel you have to hide how you feel about the insensitivity, then the friendship is already impacted and maybe a heart-to-heart is in order.

In the meantime, come here and vent all you need!

Warm hugs,

Hi James,

There are not many things that cause me to lose my cool... but to hear that you've had to put up with such thoughtless comments and insensitive 'jokes' or remarks - that had me seeing red! And coming from someone who wants you to take the time and energy out of your day to visit them, to give them a little company? They should be grateful for your company and they are going to risk losing it, if they don't change their attitude and manners. It is no-one else's business how you spend your days.

Perhaps they are ignorant or insecure or do feel threatened by your inabilities... but I think that it is equally likely that they are jealous or feel threatened by your abilities. I bet that they are not nearly as talented or computer savvy as you are!

I think that I would say something that sets a boundary the next time they are being hurtful, to nip it in the bud, even if that risks causing a bit of turbulence in the ring of friends.

James, I think you are amazing! You do a lot, offer your support to others unselfishly, and are braver and kinder than most folks will probably ever begin to appreciate. I am glad that you are able to ignore those remarks most of the time. Don't let them get to you - they do not know half of your abilities!

Mig, that was wonderful.
James, ditto You are amazing

Cindy

James... I never, never vented until I came to this place now I vent on occasion. I also babble on pointlessly on may other occasions.

Please use this place to vent. It is amazing how healing some of the thoughtful words of fellow ASKickers can be. I suspect if you could poll the folks in this place you would be surprised how many of us, well me certainly, find you to be one of the most amazing fighting spirits we have ever encountered. For my own well being I still rank Bruno ahead of you.

I think you are wrong when you say "sometimes people feel threatened by my inabilities." I suspect rather the case is foolish people feel threatened by your ABILITIES.

I was in my daughter's school today. Juliana struggles a bit to read but she is starting to improve with some assistance and this was one of those special days where I as a Dad got to intrude and share some in class reading time with now 9 year old Juliana. She is by far the wee-est of my girls and has been bullied a bit because she is a fiery soul.

Anyway the school had a series of artistic pieces about bullying on two bulletin boards. It took me back to remembering some of the nastiest folks I knew and how in hindsight most of them were unhappy sorts. Seems they always tried to psychologically level the playing field from their perspective by cutting someone else down. Whether the bully is 9 or 39, they are a sad breed.

James you are amazing overcoming all you do, I am sure all you achieve is a threat to a lot of folks who see themselves as unproductive.

I am probably rambling and just spouting drivel as I often do that you already know. None of it probably gives you much peace. So I offer the following.

Bruno could join you in your next visit to that person. He woud be more than willing to convert that person into your own personal piece of workout equipment since they think you should be more active. Maybe toss 'em in a sack and hang it in your living room for a short spell so you could work on your jab.

Have you ever seen a human basketball hoop? Bruno's artistic side can do this conversion also.

The big mouth putting green, another of his specialties.

Or he could keep it mundane and simply glue them down to your carpet with legs aloft so you would have your own Nordic track for working out the cardio and your shoulders + arms.

Soemtimes a little getting even is better for the soul than just venting and trying to figure out what a fool believes.

be well James and if you need any workout equipment just send me a PM and give Bruno the nod.

James, how are you doing? I do hope you truely feel the love holding you up. I like Steve's Bruno.
Cindy

James - ditto everything that has been said here. I love that you are part of KA.

I wonder if Steve's Bruno has a brother?

Hi Cindy,
Yes I do. I was a little on the busy side yesterday, so I didn't get a chance to make any replies to my new replies. I did read my email notifications last night though, and they are very much appreciated.
Take care,
James

Hi Mig,

Computer savvy? Well... maybe a little above average. lol. I still don't know a thing about those fancy Macs yet.

I knew this would be the one place I know where I can let out a little frustration, and I am glad I did, because you all are so understanding.

I keep getting a chuckle over the new smilie you added.

Thanks,
Take care,
James

Hi Stevec,
Thanks for your nice reply too. Did Bruno put you up to it? lol I'm kidding of course, but you know, I really didn't expect replies of this level. I knew there was going to be understanding and support, as always, but I didn't expect to see all of the nice compliments too. I'm almost at a loss for words.

"I suspect rather the case is foolish people feel threatened by your ABILITIES."
That could very well be...

Take care,
James.

Aww, thanks Cindy.

Like Mig said, time to set some boundaries. Say, if the slob who is criticizing your 'abilities/inabilities', just tell him that you'd rather not talk about that and try to change the subject. Not really sure of a good way of doing that other than, 'I don't want to talk about that right now, how about those <a sports team>?'

If you let him know you don't want to talk about something that bothers you, then he talks about it, just go home or tell him you don't feel like company right then and be done with him for the day. It's going to be awkward and will go against your good nature, but it seems to be the only thing that may get through to him that you don't like how the friendship (and I use the term lightly!) is progressing. Maybe he will respond to tough love. If not, maybe he wasn't such a good friend after all.

If not, THEN you can call on Bruno. Hugs to you, James.

James,

Like EVERYONE else here has said...YOU are the one that I think of with a heart of gold...I had a brother that died at birth and I have thought before that he might be like you..he would have been 4 years older than me and I think Im older than you but you know what I mean..lol but yea you also know I am the resident enforcer here and when i see someone getting kicked when they are down I am gonna come out swinging...people that pick on people are just rude but people that pick on people that struggle like we do to make this worl a better place and take one day at a time, kind of minding our own business there is just no excuse for.

You know my attitude...if your on the computer thats YOUR business if someone has an issue BUG OFF! can people not see that you do struggle??? you are doing the best you can..that if your were healthy you would be out there working they dont give disability to just anyone...how many of us know that???

Ok, just give me there number and I will have a little chat with them OR send me there address and I will have the trunk monkey pay them a visit..if you havent seen him look him up he is a hoot!..lol

You know that you have ALL of us and you know Im here if you need me.

Gentle Hugs,

Lisa

James some of them will never get it. But you do and we do that is what counts. I used to have a problem with letting things go and taking offense and getting pissed off for a long time. A good friend who lives in anonimity now due to working the drug scene for the Government listned to me tee off one day. He listened for a while, asked if I was done. He then said with his distinctive bronx accent "let it go it is not significant, if they can't see that let them go also". It has been great advice for me through the years.
ETTE.
Darrel.

I would have posted sooner, but I just saw this thread.

James, I have very little to add, except that from the first day I started posting, you have been one of the most helpful, supportive people to ME. You've reached out to help me privately and publically and even put time into researching and giving me links to help me learn more about things.

You're kind. You're smart. You're awesome. And I adore you.

Your friend, Holly

James,
I was just thinking of something as I read your post. It's in regard to people who ask why can you do this and that,but not workor come over. I know somedays I feel somewhat o.k., but the days that I'm in alot of pain and I don't want to leave the house,are a good example of why I can't work ....who would want an employee like me, one day ok and the next day not, too unreliable. I'm a housewife, so I have kiddies to tend to, I could never hold a steady job in my current condition.
Ignore those comments and
come here for some support, there are a lot of great friends you have here. Take care,Sheri