Re: Keeping up with (who)? Yourself or Them/

[Guest guest]

In a message dated 8/8/2005 5:00:02 PM Eastern Standard Time,

Ksmile96@... writes:

You make it seem life w/a disability is just so " merry. " I feel

that cannot be the reality.

I think she is just very positive and accepting of herself! I really have

few moments anymore where having SMA seems " unfair. "

Amy

Wife to Will 11/3/95

Mama to Olivia Isabelle 9/18/03

A new addition due 12/05- it's a boy!

http://www.babiesonline.com/babies/o/oliviathegreat/

[Guest guest]

Kimi,

I have no severe, bad recollection or memory of bad times with SMA.

I can't say that I hate SMA because I was raised with the attitude/mind set

that enable me to cope without blaming SMA for my woes; be it becoming sick

or not being able to go out and play.

I think that those who hate it haven't learned how to cope.

Angie

On 2005.08.08 16:59, Ksmile96@... wrote:

> Angie,

> No offense, but from your email comments it seems that you are the " perfect

> model " when it comes to feeling guilty or upset about having SMA or being

> DA. Are you saying you NEVER have moments when you think, " man life's not

> fair, " or " I hate SMA? " I think having these feelings sometimes are normal

> for a DA person. You make it seem life w/a disability is just so " merry. "

> I feel that cannot be the reality. If I'm misreading your comments

> please correct me. Kimi

>

>

>

>

> In a message dated 8/8/2005 2:24:48 P.M. Eastern Daylight Time,

> angie@... writes:

>

> I do hope you honestly let that thought slide right out of your head. You

> shouldn't waste any effort dwelling on such negative things.

>

> Angie

>

>

>

>

>

>

>

[Guest guest]

In a message dated 8/8/2005 8:47:26 PM Eastern Standard Time,

those2@... writes:

I believe you, Angie. You've have it pretty easy as far as sma'ers go.

You went to the protective home of your parents to the protective home

of your husband. You don't have to work for a living and appear to be

financially secure. You have a dependable caregiver and what sounds

like a perfect family/situation. You haven't been trached or vented or

g-tubed or needed long term iv antibiotics or a cough machine, or have

to be afraid your basic needs won't be met, etc. That being said, it

may be hard for you to relate to the struggles the come across this

message board. To tell these people to have a chins-up attitude (you

may not have used that exact phase but that's how it comes across) may

be insulting and condescending to some.

DAMN! I have had to go through a lot of SMA-related issues and have had less

than an easy life, yet still see Angie's POV.

Amy

Wife to Will 11/3/95

Mama to Olivia Isabelle 9/18/03

A new addition due 12/05- it's a boy!

http://www.babiesonline.com/babies/o/oliviathegreat/

[Guest guest]

Ya know, I never thought of it that way. You are right, she hasnt had and

trach, vent, g/j tube, PICC lines, etc....She has always had someone to be

there for her. Like she said she asks for help when she cant do something, but

what happens when theres no one there??

Good Point...oh and yes the " happy go lucky " attitude about having SMA does

feel condensending and insulting at times. it personally comes off to me

that you are the perfect role model and we should all learn from u.

Kimi

In a message dated 8/8/2005 8:47:25 P.M. Eastern Daylight Time,

those2@... writes:

I believe you, Angie. You've have it pretty easy as far as sma'ers go.

You went to the protective home of your parents to the protective home

of your husband. You don't have to work for a living and appear to be

financially secure. You have a dependable caregiver and what sounds

like a perfect family/situation. You haven't been trached or vented or

g-tubed or needed long term iv antibiotics or a cough machine, or have

to be afraid your basic needs won't be met, etc. That being said, it

may be hard for you to relate to the struggles the come across this

message board. To tell these people to have a chins-up attitude (you

may not have used that exact phase but that's how it comes across) may

be insulting and condescending to some.

L

[Guest guest]

No offense but I have to say I'm not buying this. I just can't believe that as a

child you never once cried because all of your friends could do something that

you couldn't. I can't believe that you had *perfect* friends who always made

sure to include you in activities. Most small children are just not capable of

that kind of response. Also, during all of your hospitalizations you never had

to go through something slightly painful and thought that if it weren't for your

SMA that you wouldn't be there?

I can believe that as an adult you've moved past associating SMA with all things

negative, but I don't believe that you were born so enlightened.

Hugs

Jeni

Angie <angie@...> wrote:

Kimi,

I have no severe, bad recollection or memory of bad times with SMA.

I can't say that I hate SMA because I was raised with the attitude/mind set

that enable me to cope without blaming SMA for my woes; be it becoming sick

or not being able to go out and play.

I think that those who hate it haven't learned how to cope.

Angie

On 2005.08.08 16:59, Ksmile96@... wrote:

> Angie,

> No offense, but from your email comments it seems that you are the " perfect

> model " when it comes to feeling guilty or upset about having SMA or being

> DA. Are you saying you NEVER have moments when you think, " man life's not

> fair, " or " I hate SMA? " I think having these feelings sometimes are normal

> for a DA person. You make it seem life w/a disability is just so " merry. "

> I feel that cannot be the reality. If I'm misreading your comments

> please correct me. Kimi

>

>

>

>

> In a message dated 8/8/2005 2:24:48 P.M. Eastern Daylight Time,

> angie@... writes:

>

> I do hope you honestly let that thought slide right out of your head. You

> shouldn't waste any effort dwelling on such negative things.

>

> Angie

>

>

>

>

>

>

>

[Guest guest]

It's ok to have a Pos point of view, but everyone has their down times. We

having SMA have something in common and that is we've lost at least 1 ability

and we have to grieve that loss, and that's the times when you are down.

I'm not dissing being positive, just that she doesn't admit there have been

some down times due to SMA.

Kimi

In a message dated 8/8/2005 9:24:26 P.M. Eastern Daylight Time,

blueyedaze@... writes:

DAMN! I have had to go through a lot of SMA-related issues and have had

less

than an easy life, yet still see Angie's POV.

Amy

[Guest guest]

Well then I guess this will be another example of how we are all different.

I honestly can't remember every detail of life from the ages of 18 months to

around 5 yrs old. All I remember are good times, fights with my sisters,

being sick in the hospital, going out to Grandma's house, playing in the pool

at a trailer park in the summer, getting refitted for a new backbrace and

general feelings of happy or sadness. I can not point an exact finger to one

memory where I can say SMA caused this or that to happen.

Besides, what good does it do? It can't be undone or changed so I was taught

to move on and invent another way to get what I want. If I need help, I ask.

I have not had to switch to something else if I didn't get what I wanted,

except for winning the lottery, I've been lucky I had set attainable goals

never once blaming SMA for making me choose it either. I suppose I was raised

to be realistic enough.

Angie

On 2005.08.08 17:45, PurplGurl3@... wrote:

> In a message dated 8/8/2005 3:22:12 PM Mountain Daylight Time,

> angie@...

>

> writes:

> > I think that those who hate it haven't learned how to cope.

>

> And I think that's assuming an awful lot. I'm a very realistic person. If I

> take the time to think about the limits SMA puts in my life, then yes, I

> hate it. When I want to go out and do something, and SMA prevents me, I

> hate that. And I think that's an acceptable way to feel. It doesn't mean

> that I sit around drowning in self-pity. I'm a generally happy person, I

> like my life for the most part, and I stay busy trying to accomplish a lot

> of things. I have good friends who don't treat me differently because of my

> disability. I have a good family. Life is good. But I'm still aware that

> SMA sometimes inconveniences the people around me, and I wish it didn't.

> I'm very aware that SMA makes simple tasks ten times harder for me, and I

> don't like it. I don't have to like it. I just have to deal with it and

> allow other things to make me happy.

>

> It's very possible to do more than just cope, but to be a happy,

> well-adjusted person, and yet still resent the extra challenges of SMA.

> It's perfectly healthy.

>

> -e

>

>

>

[Guest guest]

angie,

i'm glad your disability hasn't been the struggle for you as much as it has been

for many of us, but i think your comment below regarding ability to cope is a

bit presumptuous and judgmental.

i hate that i have sma, hate that my mother has mental health problems, hate

that my stepfather is an addict and has a disassociative disorder, hate that i

had to struggle with living on ssi below the poverty level for many years, hate

that i have to manage personal assistants for the rest of my life, hate that my

appearance makes many people uncomfortable...

and at the same time i know how to cope VERY well, and find that given the

circumstances in each phase of my life, i have done the best i can with the

internal and external resources available to me...even when the results of my

efforts sucked. and, in fact, i'm damn pleased with the quality of my life.

your blanket statement about " those how hate it " is at the very least narrow as

well as being pretty insensitive and, i suspect, hurtful or offensive to those

of us who may be having a more difficult time than you. it almost feels like a

disrespecting " dig " .

in the future, please make grossly generalized statements with great care.

thanks,

alana

Kimi,

I have no severe, bad recollection or memory of bad times with SMA.

I can't say that I hate SMA because I was raised with the attitude/mind set

that enable me to cope without blaming SMA for my woes; be it becoming sick

or not being able to go out and play.

I think that those who hate it haven't learned how to cope.

Angie

[Guest guest]

Believe it.

Besides, I can't recall being upset with having SMA as I was never told what

SMA was. Back then the only thing I can honestly remember being told was that

I was born this way and my muscles stopped growing when I was 18 months old.

It was what my kid mind understood SMA to be. My parents didn't dwell on the

medical side of SMA with me, they fretted on their own, leaving me to play as

any kid would. When I had a hard time doing something my father, or sister or

even a friend would help me do " it " another way.

I wouldn't say I was an enlightened child, I was shielded so that I could feel

like I was just another kid.

When I reached a higher level of comprehension, I began to see the

differences. I simply re-applied my early teachings and modified them to fit

my needs and found that I could still get what I wanted.

I just wish I could somehow put into words what goes through my mind so that

it can be comprehended by others.

Angie

On 2005.08.08 17:41, Jenifer Woody wrote:

> No offense but I have to say I'm not buying this. I just can't believe that

> as a child you never once cried because all of your friends could do

> something that you couldn't. I can't believe that you had *perfect* friends

> who always made sure to include you in activities. Most small children are

> just not capable of that kind of response. Also, during all of your

> hospitalizations you never had to go through something slightly painful and

> thought that if it weren't for your SMA that you wouldn't be there? I can

> believe that as an adult you've moved past associating SMA with all things

> negative, but I don't believe that you were born so enlightened. Hugs

> Jeni

>

> Angie <angie@...> wrote:

> Kimi,

>

> I have no severe, bad recollection or memory of bad times with SMA.

>

> I can't say that I hate SMA because I was raised with the attitude/mind set

> that enable me to cope without blaming SMA for my woes; be it becoming sick

> or not being able to go out and play.

>

> I think that those who hate it haven't learned how to cope.

>

> Angie

>

> On 2005.08.08 16:59, Ksmile96@... wrote:

> > Angie,

> > No offense, but from your email comments it seems that you are the

> > " perfect model " when it comes to feeling guilty or upset about having SMA

> > or being DA. Are you saying you NEVER have moments when you think, " man

> > life's not fair, " or " I hate SMA? " I think having these feelings

> > sometimes are normal for a DA person. You make it seem life w/a

> > disability is just so " merry. " I feel that cannot be the reality. If

> > I'm misreading your comments please correct me. Kimi

> >

> >

> >

> >

> > In a message dated 8/8/2005 2:24:48 P.M. Eastern Daylight Time,

> > angie@... writes:

> >

> > I do hope you honestly let that thought slide right out of your head.

> > You shouldn't waste any effort dwelling on such negative things.

> >

> > Angie

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

I'm sorry but I don't believe you. I can't believe you never felt bad when you

were a kid that you couldn't do what the other kids could. I think it's normal

to feel that way. I hate my disease. That doesn't mean I am unhappy. I am pretty

happy most of the time. I think people have to be careful not to keep all their

feelings inside behind something they call " coping. " Seems more like denial to

me

Re: Keeping up with (who)? Yourself or " Them " /

Kimi,

I have no severe, bad recollection or memory of bad times with SMA.

I can't say that I hate SMA because I was raised with the attitude/mind set

that enable me to cope without blaming SMA for my woes; be it becoming sick

or not being able to go out and play.

I think that those who hate it haven't learned how to cope.

Angie

[Guest guest]

Well, once more, I am faced with a person who is more literal than I.

I will admit I try to dress up my words to make a point especially when I

don't know to whom I am speaking. I try to generalize. I am noticing when I

do I am then disected and being literally corrected.

So, I will go and ponder my thoughts offline and try this later. I don't want

to risk " rocking the boat " and " sink. "

Angie

PS - you come across to me as being too anal.

On 2005.08.08 18:25, Ksmile96@... wrote:

> Angie,

>

> You seemed to contradict yourself a lil i think. You said 1st:

>

> " I have NEVER bought any assistive device (beyond health reasons) in order

> to

> make me fit in or make it easier for me to socialize with alledged

> friends. I

> base getting items based on my needs, physical ones mainly. "

>

>

> Then said:

>

> " My main drive is to

> (not sure how to spell this word, so go by sound) X-SCENT-CHEW-ATE myself

> ...

> I don't walk, so I go for rolling on wheels, If I did stand, I'd be only a

> tad taller than 5.1, so no need for me to exceed my 48 " height sitting

> down. "

>

> I looked up accentuate and one of the definitions was: " To pronounce with a

> stress or accent. " To me to accentuate oneself is to do it something to

> accent yourself in order for others to see you better, or to make you stand

> out, so people interact w/u better. I don't think it's just a physical

> thing. If you were trying to make yourself stand out, its not just

> physical, but attracts attention which requires socialization. And isnt

> socialization a basic need? I'm not sure if I'm conveying myself well, but

> to me someone usually accentuates themselves to grab attention to others,

> or saying " Hey! " so your need to be seen is met. It makes it easier to

> socialize once you have gotten their attention. So anything that assists

> you in doing this IS part of a need. You said " I have no qualms about how

> they see me. I am in an electric wheelchair ... nothing more. " So the

> type of wc I pick changes the way I accentuate?

> Are you getting my point?

>

>

> Also you stated:

>

> " I NEVER viewed myself as " disabled " simply because I don't " perform " daily

> activities that most of us take for granted "

>

> I don't understand this statement. I also looked up disabled and one of

> the definitions was:

> " Impaired, as in physical functioning. " Whats the difference between

> perform and function? " What is your defintion of disabled? I believe part

> of being disabled is not being able to do one or more of acts of daily

> living, which are usually the ones AB ppl take for granted. Yes if you were

> AB you would only be 48'' sitting down, but u would be able to change that

> easily by getting into a higher chair, sitting on something that boosts

> your height, etc, so why shouldn't an assistive device like a wc do this

> for someone who cant? I just didn't understand your email. Sorry if this

> sounds arguementative.

>

> Kimi

>

>

>

> In a message dated 8/8/2005 3:00:12 P.M. Eastern Daylight Time,

> angie@... writes:

>

> What I mean is this ....

>

> I have NEVER bought any assistive device (beyond health reasons) in order

> to make me fit in or make it easier for me to socialize with alledged

> friends. I

> base getting items based on my needs, physical ones mainly.

>

> I NEVER viewed myself as " disabled " simply because I don't " perform " daily

> activities that most of us take for granted. So for me, I'd buy an

> electric wheelchair that may make my physical woes less cumbersome, but I

> don't look at trying to achieve a higher height just to look someone else

> in the eye, or

> to make it easier on them to hug me or to climb stairs. My main drive is

> to (not sure how to spell this word, so go by sound) X-SCENT-CHEW-ATE

> myself ...

> I don't walk, so I go for rolling on wheels, If I did stand, I'd be only a

> tad taller than 5.1, so no need for me to exceed my 48 " height sitting

> down. My w/c is adding to my personal gain not to promise an alternative

> that doesn't even have an existing role in my life now. For example,

> raising me costs more than to lower a desk, raising me to the kitchen

> counter is no good

> if the stupid cupboard doors are in the way anyhow; so clearing out them

> only

> reduces storage space and increases kitchen remodelling costs....I could

> go on ... but it's enough said.

>

> Again, it's not the inside that would change, it's the outside ... how

> society

> looks at you. I have no qualms about how they see me. I am in an electric

> wheelchair ... nothing more.

>

>

>

>

>

>

>

>

[Guest guest]

yes, i'm sure i do. lol. it mostly serves me well, though, sometimes ruffles

feathers. oh, well.

>PS - you come across to me as being too anal.

[Guest guest]

There is a difference between (1)being upset at a particular situation

and being able to accept it and move on and (2)dwelling on your

inabilities.

I can state with assertion that nearly everyone in the world has been

upset with something they have not been able to obtain, for whatever

reason, at some point in their life. Feeling upset about not being

able to have that thing - whatever it is - due to a disability does

not mean that person has not fully accepted, with the utmost

understanding, their physical limitations in life.

<3 Kendra

> In a message dated 8/8/2005 4:40:18 PM Mountain Daylight Time,

angie@n...

> writes:

>

> > Besides, what good does it do? It can't be undone or changed so I was

> > taught

> > to move on and invent another way to get what I want. If I need

help, I ask.

> >

> > I have not had to switch to something else if I didn't get what I

wanted,

> > except for winning the lottery, I've been lucky I had set

attainable goals

> > never once blaming SMA for making me choose it either. I suppose I

was

> > raised

> > to be realistic enough.

[Guest guest]

You said...I don't look at trying to achieve a higher height just to

look someone else in the eye,

I say...I l-o-v-e being able to talk with someone eye to eye. Why

wouldn't I?? It's great to talk to a doctor about a case we are working

on or talk to a sales person who actually notices I am there because my

chair is higher.

Me and technology-->YES YES YES!!!

I guess I don't get your point.

L

Angie wrote:

> What I mean is this ....

>

> I have NEVER bought any assistive device (beyond health reasons) in

> order to

> make me fit in or make it easier for me to socialize with alledged

> friends. I

> base getting items based on my needs, physical ones mainly.

>

> I NEVER viewed myself as " disabled " simply because I don't " perform "

> daily

> activities that most of us take for granted. So for me, I'd buy an

> electric

> wheelchair that may make my physical woes less cumbersome, but I don't

> look

> at trying to achieve a higher height just to look someone else in the

> eye, or

> to make it easier on them to hug me or to climb stairs. My main drive

> is to

> (not sure how to spell this word, so go by sound) X-SCENT-CHEW-ATE

> myself ...

> I don't walk, so I go for rolling on wheels, If I did stand, I'd be

> only a

> tad taller than 5.1, so no need for me to exceed my 48 " height sitting

> down.

> My w/c is adding to my personal gain not to promise an alternative that

> doesn't even have an existing role in my life now. For example,

> raising me

> costs more than to lower a desk, raising me to the kitchen counter is

> no good

> if the stupid cupboard doors are in the way anyhow; so clearing out

> them only

> reduces storage space and increases kitchen remodelling costs....I

> could go

> on ... but it's enough said.

>

> Again, it's not the inside that would change, it's the outside ... how

> society

> looks at you. I have no qualms about how they see me. I am in an electric

> wheelchair ... nothing more.

>

> The only big thing I have about " advanced technology " is that it too

> is based

> on able-bodied facts. I kinda like the iBOT for it's curb climbing, sand

> trodding, elevation and speed, but the stair climbing scares the heck

> out of

> me. I cannot see how they deem that to be safe? I picture myself, in a

> public

> place, going up stairs only to have an inconsiderate jerk push past

> and knock

> me down .... tumble, tumble, WHACK! I break my arms, legs, or neck or

> die! So

> why not reduce the risk by rallying for a public elevator? Why is it

> such a

> big deal to enable us wheelies to climb like able-bodied people? It

> doesn't

> make us any healthier?

>

> By challenging the environment and make it change you enable a greater

> population easier access and not making them go line the pockets of money

> hungry gadget manufacturers.

>

> Angie

[Guest guest]

e,

Very well put.

L

PurplGurl3@... wrote:

> In a message dated 8/8/2005 3:22:12 PM Mountain Daylight Time,

> angie@...

> writes:

>

> > I think that those who hate it haven't learned how to cope.

>

> And I think that's assuming an awful lot. I'm a very realistic person.

> If I

> take the time to think about the limits SMA puts in my life, then yes,

> I hate

> it. When I want to go out and do something, and SMA prevents me, I

> hate that.

> And I think that's an acceptable way to feel. It doesn't mean that I

> sit around

> drowning in self-pity. I'm a generally happy person, I like my life

> for the

> most part, and I stay busy trying to accomplish a lot of things. I

> have good

> friends who don't treat me differently because of my disability. I

> have a good

> family. Life is good. But I'm still aware that SMA sometimes

> inconveniences the

> people around me, and I wish it didn't. I'm very aware that SMA makes

> simple

> tasks ten times harder for me, and I don't like it. I don't have to

> like it. I

> just have to deal with it and allow other things to make me happy.

>

> It's very possible to do more than just cope, but to be a happy,

> well-adjusted person, and yet still resent the extra challenges of

> SMA. It's perfectly

> healthy.

>

> -e

>

>

>

[Guest guest]

You can't tell me as a child you never watched your sibblings or friends ride a

bike, jump rope, run and jump and swing on a swing and wished you could do that

too? I can not believe any child in the world would not wish they could do

those things and hurt them mentaly some that they couldn't. Even my non

affected boys wish they could go do this or that. What ever the case may be at

the time that they can't do it or not old enough yet.

Missy

Angie <angie@...> wrote:

Believe it.

Besides, I can't recall being upset with having SMA as I was never told what

SMA was. Back then the only thing I can honestly remember being told was that

I was born this way and my muscles stopped growing when I was 18 months old.

It was what my kid mind understood SMA to be. My parents didn't dwell on the

medical side of SMA with me, they fretted on their own, leaving me to play as

any kid would. When I had a hard time doing something my father, or sister or

even a friend would help me do " it " another way.

I wouldn't say I was an enlightened child, I was shielded so that I could feel

like I was just another kid.

When I reached a higher level of comprehension, I began to see the

differences. I simply re-applied my early teachings and modified them to fit

my needs and found that I could still get what I wanted.

I just wish I could somehow put into words what goes through my mind so that

it can be comprehended by others.

Angie

On 2005.08.08 17:41, Jenifer Woody wrote:

> No offense but I have to say I'm not buying this. I just can't believe that

> as a child you never once cried because all of your friends could do

> something that you couldn't. I can't believe that you had *perfect* friends

> who always made sure to include you in activities. Most small children are

> just not capable of that kind of response. Also, during all of your

> hospitalizations you never had to go through something slightly painful and

> thought that if it weren't for your SMA that you wouldn't be there? I can

> believe that as an adult you've moved past associating SMA with all things

> negative, but I don't believe that you were born so enlightened. Hugs

> Jeni

>

> Angie <angie@...> wrote:

> Kimi,

>

> I have no severe, bad recollection or memory of bad times with SMA.

>

> I can't say that I hate SMA because I was raised with the attitude/mind set

> that enable me to cope without blaming SMA for my woes; be it becoming sick

> or not being able to go out and play.

>

> I think that those who hate it haven't learned how to cope.

>

> Angie

>

> On 2005.08.08 16:59, Ksmile96@... wrote:

> > Angie,

> > No offense, but from your email comments it seems that you are the

> > " perfect model " when it comes to feeling guilty or upset about having SMA

> > or being DA. Are you saying you NEVER have moments when you think, " man

> > life's not fair, " or " I hate SMA? " I think having these feelings

> > sometimes are normal for a DA person. You make it seem life w/a

> > disability is just so " merry. " I feel that cannot be the reality. If

> > I'm misreading your comments please correct me. Kimi

> >

> >

> >

> >

> > In a message dated 8/8/2005 2:24:48 P.M. Eastern Daylight Time,

> > angie@... writes:

> >

> > I do hope you honestly let that thought slide right out of your head.

> > You shouldn't waste any effort dwelling on such negative things.

> >

> > Angie

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

I believe you, Angie. You've have it pretty easy as far as sma'ers go.

You went to the protective home of your parents to the protective home

of your husband. You don't have to work for a living and appear to be

financially secure. You have a dependable caregiver and what sounds

like a perfect family/situation. You haven't been trached or vented or

g-tubed or needed long term iv antibiotics or a cough machine, or have

to be afraid your basic needs won't be met, etc. That being said, it

may be hard for you to relate to the struggles the come across this

message board. To tell these people to have a chins-up attitude (you

may not have used that exact phase but that's how it comes across) may

be insulting and condescending to some.

L

Angie wrote:

> Believe it.

>

> Besides, I can't recall being upset with having SMA as I was never

> told what

> SMA was. Back then the only thing I can honestly remember being told

> was that

> I was born this way and my muscles stopped growing when I was 18

> months old.

> It was what my kid mind understood SMA to be. My parents didn't dwell

> on the

> medical side of SMA with me, they fretted on their own, leaving me to

> play as

> any kid would. When I had a hard time doing something my father, or

> sister or

> even a friend would help me do " it " another way.

>

> I wouldn't say I was an enlightened child, I was shielded so that I

> could feel

> like I was just another kid.

>

> When I reached a higher level of comprehension, I began to see the

> differences. I simply re-applied my early teachings and modified them

> to fit

> my needs and found that I could still get what I wanted.

>

> I just wish I could somehow put into words what goes through my mind

> so that

> it can be comprehended by others.

>

> Angie

>

> On 2005.08.08 17:41, Jenifer Woody wrote:

> > No offense but I have to say I'm not buying this. I just can't

> believe that

> > as a child you never once cried because all of your friends could do

> > something that you couldn't. I can't believe that you had *perfect*

> friends

> > who always made sure to include you in activities. Most small

> children are

> > just not capable of that kind of response. Also, during all of your

> > hospitalizations you never had to go through something slightly

> painful and

> > thought that if it weren't for your SMA that you wouldn't be there?

> I can

> > believe that as an adult you've moved past associating SMA with all

> things

> > negative, but I don't believe that you were born so enlightened. Hugs

> > Jeni

> >

> > Angie <angie@...> wrote:

> > Kimi,

> >

> > I have no severe, bad recollection or memory of bad times with SMA.

> >

> > I can't say that I hate SMA because I was raised with the

> attitude/mind set

> > that enable me to cope without blaming SMA for my woes; be it

> becoming sick

> > or not being able to go out and play.

> >

> > I think that those who hate it haven't learned how to cope.

> >

> > Angie

> >

> > On 2005.08.08 16:59, Ksmile96@... wrote:

> > > Angie,

> > > No offense, but from your email comments it seems that you are the

> > > " perfect model " when it comes to feeling guilty or upset about

> having SMA

> > > or being DA. Are you saying you NEVER have moments when you think,

> " man

> > > life's not fair, " or " I hate SMA? " I think having these feelings

> > > sometimes are normal for a DA person. You make it seem life w/a

> > > disability is just so " merry. " I feel that cannot be the reality. If

> > > I'm misreading your comments please correct me. Kimi

> > >

> > >

> > >

> > >

> > > In a message dated 8/8/2005 2:24:48 P.M. Eastern Daylight Time,

> > > angie@... writes:

> > >

> > > I do hope you honestly let that thought slide right out of your head.

> > > You shouldn't waste any effort dwelling on such negative things.

> > >

> > > Angie

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Well said, Lori. Hey, we¹re just agreeing with each other right and left

eh? ;-)

Love,

N

On 8/8/05 7:46 PM, " Those Two " <those2@...> wrote:

> I believe you, Angie. You've have it pretty easy as far as sma'ers go.

> You went to the protective home of your parents to the protective home

> of your husband. You don't have to work for a living and appear to be

> financially secure. You have a dependable caregiver and what sounds

> like a perfect family/situation. You haven't been trached or vented or

> g-tubed or needed long term iv antibiotics or a cough machine, or have

> to be afraid your basic needs won't be met, etc. That being said, it

> may be hard for you to relate to the struggles the come across this

> message board. To tell these people to have a chins-up attitude (you

> may not have used that exact phase but that's how it comes across) may

> be insulting and condescending to some.

>

> L

>

> Angie wrote:

>

>> > Believe it.

>> >

>> > Besides, I can't recall being upset with having SMA as I was never

>> > told what

>> > SMA was. Back then the only thing I can honestly remember being told

>> > was that

>> > I was born this way and my muscles stopped growing when I was 18

>> > months old.

>> > It was what my kid mind understood SMA to be. My parents didn't dwell

>> > on the

>> > medical side of SMA with me, they fretted on their own, leaving me to

>> > play as

>> > any kid would. When I had a hard time doing something my father, or

>> > sister or

>> > even a friend would help me do " it " another way.

>> >

>> > I wouldn't say I was an enlightened child, I was shielded so that I

>> > could feel

>> > like I was just another kid.

>> >

>> > When I reached a higher level of comprehension, I began to see the

>> > differences. I simply re-applied my early teachings and modified them

>> > to fit

>> > my needs and found that I could still get what I wanted.

>> >

>> > I just wish I could somehow put into words what goes through my mind

>> > so that

>> > it can be comprehended by others.

>> >

>> > Angie

>> >

>> > On 2005.08.08 17:41, Jenifer Woody wrote:

>>> > > No offense but I have to say I'm not buying this. I just can't

>> > believe that

>>> > > as a child you never once cried because all of your friends could do

>>> > > something that you couldn't. I can't believe that you had *perfect*

>> > friends

>>> > > who always made sure to include you in activities. Most small

>> > children are

>>> > > just not capable of that kind of response. Also, during all of your

>>> > > hospitalizations you never had to go through something slightly

>> > painful and

>>> > > thought that if it weren't for your SMA that you wouldn't be there?

>> > I can

>>> > > believe that as an adult you've moved past associating SMA with all

>> > things

>>> > > negative, but I don't believe that you were born so enlightened. Hugs

>>> > > Jeni

>>> > >

>>> > > Angie <angie@...> wrote:

>>> > > Kimi,

>>> > >

>>> > > I have no severe, bad recollection or memory of bad times with SMA.

>>> > >

>>> > > I can't say that I hate SMA because I was raised with the

>> > attitude/mind set

>>> > > that enable me to cope without blaming SMA for my woes; be it

>> > becoming sick

>>> > > or not being able to go out and play.

>>> > >

>>> > > I think that those who hate it haven't learned how to cope.

>>> > >

>>> > > Angie

>>> > >

>>> > > On 2005.08.08 16:59, Ksmile96@... wrote:

>>>> > > > Angie,

>>>> > > > No offense, but from your email comments it seems that you are the

>>>> > > > " perfect model " when it comes to feeling guilty or upset about

>> > having SMA

>>>> > > > or being DA. Are you saying you NEVER have moments when you think,

>> > " man

>>>> > > > life's not fair, " or " I hate SMA? " I think having these feelings

>>>> > > > sometimes are normal for a DA person. You make it seem life w/a

>>>> > > > disability is just so " merry. " I feel that cannot be the reality.

If

>>>> > > > I'm misreading your comments please correct me. Kimi

>>>> > > >

>>>> > > >

>>>> > > >

>>>> > > >

>>>> > > > In a message dated 8/8/2005 2:24:48 P.M. Eastern Daylight Time,

>>>> > > > angie@... writes:

>>>> > > >

>>>> > > > I do hope you honestly let that thought slide right out of your

head.

>>>> > > > You shouldn't waste any effort dwelling on such negative things.

>>>> > > >

>>>> > > > Angie

>>>> > > >

>>>> > > >

>>>> > > >

>>>> > > >

>>>> > > >

>>>> > > >

>>>> > > >

[Guest guest]

I don't deny anything ... I have SMA 2 and my life to date is hunky-dorey!

Had I been born SMA free and then developed Adult SMA or maybe type 3 then yes

it would likely put my mindset somewhere else. I never knew life without SMA,

so to me I was normal. My parents or friends never led me to believe other

wise.

Angie

PS - as an adult, my views change yet not due to SMA concerns, I have higher

priority concerns to worry about.

On 2005.08.08 19:13, PurplGurl3@... wrote:

> In a message dated 8/8/2005 4:43:13 PM Mountain Daylight Time,

>

> Ksmile96@... writes:

> > I totally agree w/you. If you don't ever see that SMA is changing and

> > affecting your life than you are in denial.

>

> I was trying to avoid the word " denial " because it didn't sound nice, but

> yes, that's exactly what I was getting at.

>

> -e

>

>

>

[Guest guest]

My Uncle made me a swing. Only one sister rode a bike, she was a lot more

outgoing being the oldest and Daddy's girl. I saw my sister get hurt too

often riding it that I never got inspired to ride.

Maybe having boys is a lot different? Who knows.

All I know is that my recollection of being 2yrs old and upto 10 yrs old are

somewhat vague on the details yet I have strong feelings of either happiness

or sadness. Every human being does, only I still have no ill will thoughts

surrounding my SMA or how it affected my innerself at those young ages.

In the book I am working on there will be a more detailed account of those

" feelings " , but it's too extensive to post here.

Angie

On 2005.08.08 20:27, missy wrote:

> You can't tell me as a child you never watched your sibblings or friends

> ride a bike, jump rope, run and jump and swing on a swing and wished you

> could do that too? I can not believe any child in the world would not wish

> they could do those things and hurt them mentaly some that they couldn't.

> Even my non affected boys wish they could go do this or that. What ever

> the case may be at the time that they can't do it or not old enough yet.

> Missy

>

> Angie <angie@...> wrote:

> Believe it.

>

> Besides, I can't recall being upset with having SMA as I was never told

> what SMA was. Back then the only thing I can honestly remember being told

> was that I was born this way and my muscles stopped growing when I was 18

> months old. It was what my kid mind understood SMA to be. My parents didn't

> dwell on the medical side of SMA with me, they fretted on their own,

> leaving me to play as any kid would. When I had a hard time doing something

> my father, or sister or even a friend would help me do " it " another way.

>

> I wouldn't say I was an enlightened child, I was shielded so that I could

> feel like I was just another kid.

>

> When I reached a higher level of comprehension, I began to see the

> differences. I simply re-applied my early teachings and modified them to

> fit my needs and found that I could still get what I wanted.

>

> I just wish I could somehow put into words what goes through my mind so

> that it can be comprehended by others.

>

> Angie

>

> On 2005.08.08 17:41, Jenifer Woody wrote:

> > No offense but I have to say I'm not buying this. I just can't believe

> > that as a child you never once cried because all of your friends could do

> > something that you couldn't. I can't believe that you had *perfect*

> > friends who always made sure to include you in activities. Most small

> > children are just not capable of that kind of response. Also, during all

> > of your hospitalizations you never had to go through something slightly

> > painful and thought that if it weren't for your SMA that you wouldn't be

> > there? I can believe that as an adult you've moved past associating SMA

> > with all things negative, but I don't believe that you were born so

> > enlightened. Hugs Jeni

> >

> > Angie <angie@...> wrote:

> > Kimi,

> >

> > I have no severe, bad recollection or memory of bad times with SMA.

> >

> > I can't say that I hate SMA because I was raised with the attitude/mind

> > set that enable me to cope without blaming SMA for my woes; be it

> > becoming sick or not being able to go out and play.

> >

> > I think that those who hate it haven't learned how to cope.

> >

> > Angie

> >

> > On 2005.08.08 16:59, Ksmile96@... wrote:

> > > Angie,

> > > No offense, but from your email comments it seems that you are the

> > > " perfect model " when it comes to feeling guilty or upset about having

> > > SMA or being DA. Are you saying you NEVER have moments when you think,

> > > " man life's not fair, " or " I hate SMA? " I think having these feelings

> > > sometimes are normal for a DA person. You make it seem life w/a

> > > disability is just so " merry. " I feel that cannot be the reality. If

> > > I'm misreading your comments please correct me. Kimi

> > >

> > >

> > >

> > >

> > > In a message dated 8/8/2005 2:24:48 P.M. Eastern Daylight Time,

> > > angie@... writes:

> > >

> > > I do hope you honestly let that thought slide right out of your head.

> > > You shouldn't waste any effort dwelling on such negative things.

> > >

> > > Angie

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Tippin' my hat towards you too!

Angie

On 2005.08.08 21:05, blueyedaze@... wrote:

> In a message dated 8/8/2005 5:00:02 PM Eastern Standard Time,

> Ksmile96@... writes:

>

> You make it seem life w/a disability is just so " merry. " I feel

> that cannot be the reality.

>

>

> I think she is just very positive and accepting of herself! I really have

> few moments anymore where having SMA seems " unfair. "

>

> Amy

> Wife to Will 11/3/95

> Mama to Olivia Isabelle 9/18/03

> A new addition due 12/05- it's a boy!

> http://www.babiesonline.com/babies/o/oliviathegreat/

>

>

>

>

[Guest guest]

It goes both ways Kimi.

I learn something new everyday.

Angie

On 2005.08.08 21:31, Ksmile96@... wrote:

> Ya know, I never thought of it that way. You are right, she hasnt had and

> trach, vent, g/j tube, PICC lines, etc....She has always had someone to be

> there for her. Like she said she asks for help when she cant do something,

> but what happens when theres no one there??

> Good Point...oh and yes the " happy go lucky " attitude about having SMA does

> feel condensending and insulting at times. it personally comes off to me

> that you are the perfect role model and we should all learn from u.

> Kimi

>

>

>

>

> In a message dated 8/8/2005 8:47:25 P.M. Eastern Daylight Time,

> those2@... writes:

>

> I believe you, Angie. You've have it pretty easy as far as sma'ers go.

> You went to the protective home of your parents to the protective home

> of your husband. You don't have to work for a living and appear to be

> financially secure. You have a dependable caregiver and what sounds

> like a perfect family/situation. You haven't been trached or vented or

> g-tubed or needed long term iv antibiotics or a cough machine, or have

> to be afraid your basic needs won't be met, etc. That being said, it

> may be hard for you to relate to the struggles the come across this

> message board. To tell these people to have a chins-up attitude (you

> may not have used that exact phase but that's how it comes across) may

> be insulting and condescending to some.

>

> L

>

>

>

>

>

>

>

[Guest guest]

Kimi,

The down times I do have have been mainly involving sibbling spats, parent

worries, getting gray hair, winter blahs, but I am sure gonna dig deep to see

if I can find a downer due to my SMA .... dig, dig, dig, dig, dig, dig, dig,

dig, dig, dig, dig, dig, dig, dig, dig, dig, dig, dig, dig, dig, dig, dig,

dig, dig, dig, dig, dig, dig, dig, dig, dig, dig, dig, dig, dig, dig, dig,

dig, dig, dig, dig, dig, dig, dig, dig, dig, dig, dig, dig, dig, dig, dig,

dig, dig, dig, dig, dig, dig, dig, dig, dig, dig, dig, dig, dig, dig, dig,

dig, dig, dig, dig, dig, dig, dig, dig, dig, dig ......... Yep, I have one

........ Old Age and SMA don't mix well. I now take Mestinon to give me back

some of my strength. I wouldn't have needed to do this if I didn't have SMA.

I did get emotional when I learned about the why's and how's of what I have

been going through so this would qualify as a SMA-downer moment.

Angie

On 2005.08.08 21:41, Ksmile96@... wrote:

> It's ok to have a Pos point of view, but everyone has their down times.

> We having SMA have something in common and that is we've lost at least 1

> ability and we have to grieve that loss, and that's the times when you are

> down. I'm not dissing being positive, just that she doesn't admit there

> have been some down times due to SMA.

> Kimi

>

>

>

>

> In a message dated 8/8/2005 9:24:26 P.M. Eastern Daylight Time,

> blueyedaze@... writes:

>

> DAMN! I have had to go through a lot of SMA-related issues and have had

> less

> than an easy life, yet still see Angie's POV.

>

> Amy

>

>

>

>

>

>

>

[Guest guest]

Right back at you Alana.

Angie

On 2005.08.08 18:40, alrt@... wrote:

> angie,

>

> i'm glad your disability hasn't been the struggle for you as much as it has

> been for many of us, but i think your comment below regarding ability to

> cope is a bit presumptuous and judgmental.

>

> i hate that i have sma, hate that my mother has mental health problems,

> hate that my stepfather is an addict and has a disassociative disorder,

> hate that i had to struggle with living on ssi below the poverty level for

> many years, hate that i have to manage personal assistants for the rest of

> my life, hate that my appearance makes many people uncomfortable...

>

> and at the same time i know how to cope VERY well, and find that given the

> circumstances in each phase of my life, i have done the best i can with the

> internal and external resources available to me...even when the results of

> my efforts sucked. and, in fact, i'm damn pleased with the quality of my

> life.

>

> your blanket statement about " those how hate it " is at the very least

> narrow as well as being pretty insensitive and, i suspect, hurtful or

> offensive to those of us who may be having a more difficult time than you.

> it almost feels like a disrespecting " dig " .

>

> in the future, please make grossly generalized statements with great care.

>

> thanks,

> alana

>

>

>

> Kimi,

>

> I have no severe, bad recollection or memory of bad times with SMA.

>

> I can't say that I hate SMA because I was raised with the attitude/mind set

> that enable me to cope without blaming SMA for my woes; be it becoming sick

> or not being able to go out and play.

>

> I think that those who hate it haven't learned how to cope.

>

> Angie

>

>

>

>

[Guest guest]

The stars must be just right. *L*

L

wrote:

> Well said, Lori. Hey, we¹re just agreeing with each other right and left

> eh? ;-)

>

> Love,

> N

>

> On 8/8/05 7:46 PM, " Those Two " <those2@...> wrote:

>

> > I believe you, Angie. You've have it pretty easy as far as sma'ers go.

> > You went to the protective home of your parents to the protective home

> > of your husband. You don't have to work for a living and appear to be

> > financially secure. You have a dependable caregiver and what sounds

> > like a perfect family/situation. You haven't been trached or vented or

> > g-tubed or needed long term iv antibiotics or a cough machine, or have

> > to be afraid your basic needs won't be met, etc. That being said, it

> > may be hard for you to relate to the struggles the come across this

> > message board. To tell these people to have a chins-up attitude (you

> > may not have used that exact phase but that's how it comes across) may

> > be insulting and condescending to some.

> >

> > L

> >

> > Angie wrote:

> >

> >> > Believe it.

> >> >

> >> > Besides, I can't recall being upset with having SMA as I was never

> >> > told what

> >> > SMA was. Back then the only thing I can honestly remember being told

> >> > was that

> >> > I was born this way and my muscles stopped growing when I was 18

> >> > months old.

> >> > It was what my kid mind understood SMA to be. My parents didn't dwell

> >> > on the

> >> > medical side of SMA with me, they fretted on their own, leaving me to

> >> > play as

> >> > any kid would. When I had a hard time doing something my father, or

> >> > sister or

> >> > even a friend would help me do " it " another way.

> >> >

> >> > I wouldn't say I was an enlightened child, I was shielded so that I

> >> > could feel

> >> > like I was just another kid.

> >> >

> >> > When I reached a higher level of comprehension, I began to see the

> >> > differences. I simply re-applied my early teachings and modified them

> >> > to fit

> >> > my needs and found that I could still get what I wanted.

> >> >

> >> > I just wish I could somehow put into words what goes through my mind

> >> > so that

> >> > it can be comprehended by others.

> >> >

> >> > Angie

> >> >

> >> > On 2005.08.08 17:41, Jenifer Woody wrote:

> >>> > > No offense but I have to say I'm not buying this. I just can't

> >> > believe that

> >>> > > as a child you never once cried because all of your friends

> could do

> >>> > > something that you couldn't. I can't believe that you had

> *perfect*

> >> > friends

> >>> > > who always made sure to include you in activities. Most small

> >> > children are

> >>> > > just not capable of that kind of response. Also, during all of

> your

> >>> > > hospitalizations you never had to go through something slightly

> >> > painful and

> >>> > > thought that if it weren't for your SMA that you wouldn't be

> there?

> >> > I can

> >>> > > believe that as an adult you've moved past associating SMA

> with all

> >> > things

> >>> > > negative, but I don't believe that you were born so

> enlightened. Hugs

> >>> > > Jeni

> >>> > >