Re: Accepting Your Disability

[Guest guest]

Meg,

It's a good question and I'm glad you brought it up, because I've had a lot of

those same things on my mind lately. Personally, I think it's silly to think

that " accepting your disability " is something that just happens once, and then

you're good to go. I think it's an issue we have to deal with and come to terms

with over and over throughout our lives. Having a disability means completely

different things to me now than it did six years ago. When health and abilities

change, and when life circumstances and challenges and priorities change, I have

to deal with " I hate being disabled, it's not fair! " issues all over again.

There's also the part of me that basically says, " I can accept it, but I don't

have to like it. " Maybe that means I don't really accept it, I don't know. If

acceptance just means that I have a firm grip on reality and don't entertain any

denial induced fantasies of my disability going away, then sure, I accept it. I

know this is how my life is always going to be, and I have a pretty good idea

what all the implications are. But I don't like it, and really, should I have to

like it? What rational person wouldn't be bothered by physical pain and

weakness, by inaccessibility everywhere you go, by rude people and attitudes, by

lack of services and supports necessary to make daily life happen, and all the

other negatives that go along with disability? If I claim those things don't

ever both me, isn't that more indicative of denial than acceptance?

And now I feel like I'm talking and thinking in circles, so I guess I'll stop

for now and see what everyone else has to say. I'm really interested in

people's thoughts and hope you get some good responses to this topic.

e

Accepting Your Disability

A Question for Everyone:

How do you know whether or not you have accepted your disability?

Are there any of you out there having problems with acceptance?

Has acceptance come easy or naturally to any of you?

I ask these questions because I've been told by a few professionals

that the reason for my anxiety, depression, low self-esteem and very

poor self-image is because I haven't really accepted my disability. I

keep saying that I have accepted it, I just hate what its done to my

life and how others treat me. But that's the same as non-acceptance.

How do I accept it? How have some of you accepted your disability?

Is it even possible to truly accept being disabled? What does that

mean exactly?

I hope you guys will share your thoughts on this with me.

I don't mean to upset anyone with these questions and I am sorry if I

did.

God Bless!

~ Meg ~

( <http://www.myspace.com/sexytear> http://www.myspace.com/sexytear)

[Guest guest]

Hi Meg,

I agree with some of what e has already said. What I do is view this

disorder, SMA as a " Rose " . It has its " thorns " , but I spend my time smelling

the rose's petals.

I do this by accepting the reality of its medical side and the social " hang

ups " of SMA. Yes, it does and has changed throughout my life, but what

doesn't change is how I deal with it.

For example, with the exception of losing a loved one (a harsher, but still

liveable reality), I concentrate on the positive side of whatever woe I am

muddling through. So if I have a problem I will spend some time searching for

answers; ones that worked before or look for new ones. I do what most do, I

ask others....friends, family, acquaintances and lastly, professionals.

I don't dwell on the things I can not change. I focus on the ones I do have

control over and in most cases its my mouth! My mother always says " My tongue

is my strongest muscle " LOL!

Maybe the way I was raised, had some influence on my outlook on life, but you

are your own best friend, so take charge. I am not a strong supporter of the

saying/belief " the squeaky wheel gets the oil/grease " because it can make

others defensive or too aggressive making them want to either ignore you or

squeak louder. It has its place among the political scene, but for more

personal matters it has always been a soft voice, a wink and a smile that

gets me what I need.

I am very accepting of my disorder. I would think after reading what others

have to say that you will find your course and travel it to a positive

conclusion.

Question for your " doctors " : do they offer any suggestions or just rhyme off

the symptoms without " accepting their situation " as a doctor. Point out to

them that a doctor just doesn't analyze. Doctors are to treat/heal their

patients or refer them to another who can?

Angie

On Wednesday 01 November 2006 22:03, Meg Witkowski wrote:

> A Question for Everyone:

>

>

>

> How do you know whether or not you have accepted your disability?

>

>

>

> Are there any of you out there having problems with acceptance?

>

>

>

> Has acceptance come easy or naturally to any of you?

>

>

>

> I ask these questions because I've been told by a few professionals

> that the reason for my anxiety, depression, low self-esteem and very

> poor self-image is because I haven't really accepted my disability. I

> keep saying that I have accepted it, I just hate what its done to my

> life and how others treat me. But that's the same as non-acceptance.

>

>

>

> How do I accept it? How have some of you accepted your disability?

>

>

>

> Is it even possible to truly accept being disabled? What does that

> mean exactly?

>

>

>

> I hope you guys will share your thoughts on this with me.

>

>

>

> I don't mean to upset anyone with these questions and I am sorry if I

> did.

>

>

>

>

>

> God Bless!

>

> ~ Meg ~

>

> ( <http://www.myspace.com/sexytear> http://www.myspace.com/sexytear)

>

>

>

>

>

>

[Guest guest]

> How do you know whether or not you have accepted your disability?

I often wondered this myself. I'm thinking a positive

sign would be feeling like you do not have to justify

yourself all the time to other people.

> Are there any of you out there having problems with acceptance?

I guess I do because I can't really imagine what I'd be like if I did.

My husband always tells me I haven't.

> Has acceptance come easy or naturally to any of you?

No. Of course I have anxiety, depression, low self-esteem and

poor self-image too.

Jenn

[Guest guest]

In a message dated 11/2/2006 7:23:35 PM Eastern Standard Time,

nekrosys@... writes:

Who is the oldest person on this List?

I'm 27 wih type I/II.

Amy

Lovin' my lil ones

Olivia & Phineas

,,, ,............................>o<

(c ' ;')..........................('; ' )))

| \ ¯|o.......................o|¯ /.|

_(( ¯,¸¸)_(o)______(o)_((¸¸,¯ )_

¯/¸¸/¯U¯¯¯¯¯¯/=\¯¯¯¯¯UU¯¯¯.

U................../ss1\....................

(http://lilypie.com/)

(http://lilypie.com/)

[Guest guest]

In a message dated 11/2/2006 8:09:26 PM Eastern Standard Time,

dvlwksp@... writes:

I'm 27, type I.

I keep meaning to ask you, how much do you weigh? Just curious. Feel free

to ask me anything about my pregnancies and births!

Amy

Lovin' my lil ones

Olivia & Phineas

,,, ,............................>o<

(c ' ;')..........................('; ' )))

| \ ¯|o.......................o|¯ /.|

_(( ¯,¸¸)_(o)______(o)_((¸¸,¯ )_

¯/¸¸/¯U¯¯¯¯¯¯/=\¯¯¯¯¯UU¯¯¯.

U................../ss1\....................

(http://lilypie.com/)

(http://lilypie.com/)

[Guest guest]

Well said, !

Every day is different. Some days when I am in more pain or weaker it's a

struggle and I feel more depressed and I worry about tomorrow and what that

will bring. It also seems the weaker I become the more they cut back the

Home Care Services. My worst fear is ending up in a nursing home while I'm

in my 40's!!

I suffer from anxiety, depression, low self-esteem and

poor self-image also.

Who is the oldest person on this List?

Take care

Bye for now

[Guest guest]

In a message dated 11/2/2006 9:09:50 PM Eastern Standard Time,

dvlwksp@... writes:

Before I was pregnant, I weighed about 100 lbs and I'm 5'2. I'm not

sure how much I weigh now but I feel like a cow, lol. My clothes

all still fit and everything but I have been having bad morning

sickness too.

Ohh, ok, good! I'm ridiculously tiny and can't gain to save my life! That

was one of my major concerns during both pregnancies.

Amy

Wife to Will 11/3/95

Mama to Olivia Isabelle 9/18/03

&

Phineas Maximilian 11/30/05

[Guest guest]

Meg,

For me, it was not so much accepting my disability as it was

accepting myself for who I was. In college, I was diagnosed with

anorexia which I had apparently had for years. My weight was the

only thing that I felt like I had control over in terms of my own

body so whenever comments were made about 'Oh, you're getting so

big' or 'Oh, you're going to wear my back out', it eventually caused

me to stop eating. I prefer to be lifted by a single person rather

than a device so when school staff made these comments to me in high

school, my need to be 'light' grew worse and worse. Once I realize

I had an eating disorder, I took steps to treat myself and I was at

a 'healthy' weight by the time I graduated college. Other than

that, I was overall happy with myself and who I was......at least I

thought I was. In 2001, I had been dating a guy seriously for a

long time when I got very ill and needed hospitalized. This was

more than he could take and we eventually broke up. Once we broke

up, I went through a period of time where I hated my disability and

I wanted to do anything I could to 'fix' it. After a lot of soul

searching, praying, and talking with friends, I eventually accepted

myself as a whole person and my limitations. This is a very

personal thing and, unfortunately, there was no way for someone to

tell me how to do it. I had to make a decision to like me for me

and not let my limitations hinder anything I wanted to do. I

believe in the saying 'Where there is a will, there is a way.' We

may have to do things differently but I don't think there is

anything I 'can't' do.

I hope this helps.

*hugs*

>

> A Question for Everyone:

>

>

>

> How do you know whether or not you have accepted your disability?

>

>

>

> Are there any of you out there having problems with acceptance?

>

>

>

> Has acceptance come easy or naturally to any of you?

>

>

>

> I ask these questions because I've been told by a few professionals

> that the reason for my anxiety, depression, low self-esteem and

very

> poor self-image is because I haven't really accepted my

disability. I

> keep saying that I have accepted it, I just hate what its done to

my

> life and how others treat me. But that's the same as non-

acceptance.

>

>

>

> How do I accept it? How have some of you accepted your

disability?

>

>

>

> Is it even possible to truly accept being disabled? What does that

> mean exactly?

>

>

>

> I hope you guys will share your thoughts on this with me.

>

>

>

> I don't mean to upset anyone with these questions and I am sorry

if I

> did.

>

>

>

>

>

> God Bless!

>

> ~ Meg ~

>

> ( <http://www.myspace.com/sexytear>

http://www.myspace.com/sexytear)

>

>

>

>

>

>

[Guest guest]

> Who is the oldest person on this List?

I'm 36, with type 2, but I think there are a few folks on this list

a bit older.

Jenn

[Guest guest]

In a message dated 11/2/2006 7:23:35 PM Eastern Standard Time,

nekrosys@... writes:

> Who is the oldest person on this List?

Roughly half-a-century

jv

[Guest guest]

I'm 27, type I.

>

> Well said, !

>

> Every day is different. Some days when I am in more pain or weaker

it's a

> struggle and I feel more depressed and I worry about tomorrow and

what that

> will bring. It also seems the weaker I become the more they cut

back the

> Home Care Services. My worst fear is ending up in a nursing home

while I'm

> in my 40's!!

>

> I suffer from anxiety, depression, low self-esteem and

> poor self-image also.

>

> Who is the oldest person on this List?

>

> Take care

>

> Bye for now

>

>

>

[Guest guest]

I am 47 (soon to be 48 on Christmas Day) I have the Adult Onset of SMA (Type 4)

....I am also married for 22 years to my wonderful husband who isn't

physically challenged..I was diagnosed with SMA 2 weeks before Our 2nd Wedding

Anniversary...

WE have been through everything together...

Be Blessed..

Tomlin <sjtomlin@...> wrote:

Well said, !

Every day is different. Some days when I am in more pain or weaker it's a

struggle and I feel more depressed and I worry about tomorrow and what that

will bring. It also seems the weaker I become the more they cut back the

Home Care Services. My worst fear is ending up in a nursing home while I'm

in my 40's!!

I suffer from anxiety, depression, low self-esteem and

poor self-image also.

Who is the oldest person on this List?

Take care

Bye for now

" All that I am or I hope to be I owe to My

Mother & My Father "

Mar

---------------------------------

Want to start your own business? Learn how on Small Business.

[Guest guest]

Sadly it is only 7pm and my bed is calling me as I have to get up again

at 4am for work. I will reply on the weekend.

Lori

Meg Witkowski wrote:

> A Question for Everyone:

>

> How do you know whether or not you have accepted your disability?

>

> Are there any of you out there having problems with acceptance?

>

> Has acceptance come easy or naturally to any of you?

>

> I ask these questions because I've been told by a few professionals

> that the reason for my anxiety, depression, low self-esteem and very

> poor self-image is because I haven't really accepted my disability. I

> keep saying that I have accepted it, I just hate what its done to my

> life and how others treat me. But that's the same as non-acceptance.

>

> How do I accept it? How have some of you accepted your disability?

>

> Is it even possible to truly accept being disabled? What does that

> mean exactly?

>

> I hope you guys will share your thoughts on this with me.

>

> I don't mean to upset anyone with these questions and I am sorry if I

> did.

>

> God Bless!

>

> ~ Meg ~

>

> ( <http://www.myspace.com/sexytear <http://www.myspace.com/sexytear>>

> http://www.myspace.com/sexytear <http://www.myspace.com/sexytear>)

>

>

[Guest guest]

Before I was pregnant, I weighed about 100 lbs and I'm 5'2. I'm not

sure how much I weigh now but I feel like a cow, lol. My clothes

all still fit and everything but I have been having bad morning

sickness too.

>

>

> In a message dated 11/2/2006 8:09:26 PM Eastern Standard Time,

> dvlwksp@... writes:

>

> I'm 27, type I.

>

>

>

> I keep meaning to ask you, how much do you weigh? Just curious.

Feel free

> to ask me anything about my pregnancies and births!

>

>

> Amy

> Lovin' my lil ones

> Olivia & Phineas

>

>

> ,,, ,............................>o<

> (c ' ;')..........................('; ' )))

> | \ ¯|o.......................o|¯ /.|

> _(( ¯,¸¸)_(o)______(o)_((¸¸,¯ )_

> ¯/¸¸/¯U¯¯¯¯¯¯/=\¯¯¯¯¯UU¯¯¯.

> U................../ss1\....................

>

> (http://lilypie.com/)

> (http://lilypie.com/)

>

>

>

[Guest guest]

I just turned 58

SMA, type 3, onset - birth

Lainie

Tomlin <sjtomlin@...> wrote:

Well said, !

Every day is different. Some days when I am in more pain or weaker it's a

struggle and I feel more depressed and I worry about tomorrow and what that

will bring. It also seems the weaker I become the more they cut back the

Home Care Services. My worst fear is ending up in a nursing home while I'm

in my 40's!!

I suffer from anxiety, depression, low self-esteem and

poor self-image also.

Who is the oldest person on this List?

Take care

Bye for now

---------------------------------

Check out the New - Fire up a more powerful email and get things

done faster.

[Guest guest]

A Question for Everyone: I'm Derik. I'm 49 and I have SMA adult onset.

Diagnosed I'd say at about year 2000. I had to deal with the SMA long time

before I

even knew what it was.

In one way it was better I didnt know. And another way it was a good thing.

Before I knew I did'nt fear the future. I did ok until I went through some

tramatic experiances and while those were inhibiting me I started falling alot.

3

broken ankles, and bashed in knees in three years worth. That lead to the

diagnosis. Then wham. All those other woes fell second to the looming fear of

the

unknown unpredictable future. I stopped looking at motorcycles and noticed

every wheel chair. That was 6 years ago. So where am I know. I liked what was

said earlier. I dont believe you can accept a disability like this just once and

its over. Depending on my attitude. If down I have to accept it daily. If up I

have changed my lifestyle to where I dont think about it that much. When Im

down it basically out weighs my body. And when I'm up. I keep it no bigger than

my big toe. I got a chair, a walker, canadian crutches and I havent made

myself use them yet. I just do as good as i can without them.

In a way you can say I havent accepted the SMA. Or the projected outcome.

When I stand in front of my walker, or even think about it as I am now. I cry.

So

I dont even go there. And I just keep going on while I can. Mines coming on

so slow. And I've learned to adapt so well. That I dont know I've lost an

ability till I literally cant do it anymore. I stop myself from saying " I used

to

be able to........ " cause it has a domino effect on me and I can depress

myself. Damn I'm long winded. I better go on to the next question.

How do you know whether or not you have accepted your disability?

I know I have accepted it when I am " Derik " bigger than it is. SMA is only a

small part of me. As I said earlier. I give it enough space to live in my toe.

When I cease to accept it. I give it more power over me than I care to. It

then resides in my mind and thoughts. My future, my good and bad muscles, my

relationships and my hopes and dreams.

Are there any of you out there having problems with acceptance?

I still have problems with it. But its something I believe we all have to do

every day. I have a much better day if I keep it in a small package. When I

get down and into the poor mes. I find what works best is to go help someone

else. You dont have to have a disability to be on a rougher road than were on.

Seems to always work for me. I know alot of physically healthy people who cannot

imagine living without the aide of alcohol or drugs because they have lost

all hope.

Has acceptance come easy or naturally to any of you?

It came hard. I'm a big baby. I don't wanna, I don't wanna, pout, pout. I was

taught it.

I been in recovery " drunk and addict " then " sex and food " then " care taking

and controlling " . Been clean and sober 24 years. I have to accept alot of

things. Good and bad.

Serenity Prayer. Short form and long form. If something is bothering me. Its

because I'm not accepting it. Naturally I'd say " yeah but!! " to everything.

I ask these questions because I've been told by a few professionals

that the reason for my anxiety, depression, low self-esteem and very

poor self-image is because I haven't really accepted my disability. I

keep saying that I have accepted it, I just hate what its done to my

life and how others treat me. But that's the same as non-acceptance.

I'm not a professional anymore. lol Cause I'm on social security. But.....

I've told a few of those professionals that I can go two ways. One to

get into thier self centered psycho babble game of what ifs and could be's.

Where basically I can do same thing. The cure? Rigerious self honesty.

or

I can get on my knees and pray for stronger faith and trust in Gods guidance

and intervention within my life. Prayer, meditation and action. No Fee either.

Then ask

them if they have any job skills? Cause when the word gets out. They will

need

to find a new line of work. Accept that %( & $(# !!! of course I'm just

kidding here. LOL

How do I accept it? How have some of you accepted your disability?

Me personally. I once made a sincere prayer to God. Asked him to remove my

ability to run away from my problems. Help me have the courage to face them. I

accept it that way.

But I'm still working on that courage.

And another way. I " used to be " a very good athlete. So good. God seen fit to

give me a handicap same way those golfers get one. LOL That one I use when I

need to laugh.

Is it even possible to truly accept being disabled? What does that

mean exactly?

I imagine it is if you truely want to be. I'm not ready to accept that

myself yet. Theres a huge amount of gray area to debate that in while your

busy living life the best possible way you can right now. But.... If I got to

unload a moving van all by myself. I will raise my hand and say I need some help

!! I'm a little bit disabled. lol

I hope you guys will share your thoughts on this with me.

I don't mean to upset anyone with these questions and I am sorry if I

did.

God Bless!

~ Meg ~

[Guest guest]

Wow, excellent post e! I agree with everything you said

I'm 46, with SMA III (I'll get the age question out of the way first

lol).

Like e, I have been thinking about this a lot recently too.

And also like e, I think we SMA'ers don't just 'accept our

disability' once, and then move on and never have to give it another

thought. I think we go through the acceptance process over and over,

as our life circumstances change, as our strength and abilities

dwindle. And I think that is a completely normal response.

Meg wrote:

>I ask these questions because I've been told by a few

>professionals that the reason for my anxiety, depression,

>low self-esteem and very poor self-image is because I

>haven't really accepted my disability. I keep saying

>that I have accepted it, I just hate what its done to my

>life and how others treat me.

I think I can understand how you feel Meg, I've dealt with anxiety a

lot throughout my life. My anxiety doesn't stem from the fact that

I'm disabled (I too have accepted that fact), it stems (for me) from

the fact that my circumstances keep changing.

As I grow older I keep losing more strength and abilities, and as I

lose those abilities, I have to try to find new and different ways to

compensate....and it scares me to think of what will happen when I am

no longer able to compensate.

I realize that we are all different on this list, and that we don't

all have the same strength and abilities. So I can only speak for

myself on this

Yes, I have accepted my disability. I accepted it when I was 7, and

realized I couldn't do the physical things all my friends did. I

accepted it again when I was 12, and had to start using a wheelchair

because I no longer had the strength to walk. I accepted it again

when I was 16 and had my spinal fusion, lost more strength, and had

to find new ways to get a bath, wash my hair, go to the bathroom.

I accepted it again in my early 20's, when I lost the ability to get

myself in and out of bed independently, and again in my late 20's,

when I lost the ability to drive. I accepted it several more times

in my 30's, and am accepting it again now, when for no apparent

reason, I seem to be rapidly losing strength in my arms, and am

having major trouble with the basics of my daily self care.

For me, it's an ongoing process of acceptance, and I think many

Doctors don't understand that. And if you find one who does, grab

him/her and hang on...because I think it's fairly rare

Anyway, that's my take on *my* acceptance...I hope it made some sense

(in Las Vegas)

--- PurplGurl3@... wrote:

> Meg,

>

>It's a good question and I'm glad you brought it up, because I've

>had a lot of those same things on my mind lately. Personally, I

>think it's silly to think that " accepting your disability " is

>something that just happens once, and then you're good to go. I

>think it's an issue we have to deal with and come to terms with

>over and over throughout our lives. Having a disability means

>completely different things to me now than it did six years ago.

>When health and abilities change, and when life circumstances and

>challenges and priorities change, I have to deal with " I hate being

>disabled, it's not fair! " issues all over again.

>

>There's also the part of me that basically says, " I can accept it,

>but I don't have to like it. " Maybe that means I don't really

>accept it, I don't know. If acceptance just means that I have a

>firm grip on reality and don't entertain any denial induced

>fantasies of my disability going away, then sure, I accept it. I

>know this is how my life is always going to be, and I have a pretty

>good idea what all the implications are. But I don't like it, and

>really, should I have to like it? What rational person wouldn't be

>bothered by physical pain and weakness, by inaccessibility

>everywhere you go, by rude people and attitudes, by lack of

>services and supports necessary to make daily life happen, and all

>the other negatives that go along with disability? If I claim those

>things don't ever both me, isn't that more indicative of denial

>than acceptance?

>

>And now I feel like I'm talking and thinking in circles, so I

>guess I'll stop for now and see what everyone else has to say.

>I'm really interested in people's thoughts and hope you get some

>good responses to this topic.

>

>e

________________________________________________________________________________\

____

We have the perfect Group for you. Check out the handy changes to

(http://)

[Guest guest]

Dear Everyone,

Thank you so much for your incredible response to my questions. I am

comforted to know that I am not alone or crazy for feeling how I feel.

Like most of you said, acceptance is a lifelong process. We all have

our good days and our bad days. Every time I lose some strength, I

fall into despair, and live in pity for some time. Then, for no

reason, I get a burst of optimism and energy and I feel like I am not

that bad off and I can conquer the world. Then, something happens,

and I break down again, and the cycle begins all over!

But as I read all the responses, I had a thought. Who has the

authority to tell me whether I have accepted my disability or not?

These 2 psychiatrists and 1 psychologist, based their diagnosis of my

" non-acceptance " on emotional problems people have every day, who are

able-bodied. How can they determine that I have not accepted my

disability? I just don't understand. And now I feel angry that I let

them convince me of it. Like I stated before, I do agree with you

guys about it being a life long process and there are good days and

bad days.

I go to a DBT group every week and these people are able-bodied, and

suffer from the same things I do, low self-esteem, depression,

anxiety, poor self-image, the things that have convinced these 3

professionals that I have not accepted my disability.

When the 1st psychiatrist said that to me, I told him he was wrong.

And I was positive about that. Yet my arm pain began, I got weaker,

and other medical problems arose, stress in the family, and I was in a

depressed state for several months and that is when the other

psychiatrist and psychologist convinced me that I wasn't feeling

" happy " because I haven't accepted my disability. When I said that I

have, I just hate what it has taken from me, and how some people treat

me because of it, and that's when the psychiatrist said it's the SAME

thing as not accepting my disability. Does this sound right to

anyone? I'm trained as a psychologist myself, and it all has thrown

me for a loop.

I think you guys are right. Only I can know whether I have accepted

it or not and it is a life-long process of adjustment, because it's a

progressive disease and because we all age and changes will occur.

Oh, to answer the other questions about myself:

I am originally from Poland. I came to the US, (Chicago,

specifically), when I was 8. My family and I moved out of Chicago

last year, about 30 miles away, to a beautiful suburb, into a newly

built house. I turned 29 in June, and I have SMA-II. I am about 5ft

tall and around 105 lbs, hazel eyes and brown hair. My photo is in

the group photo section and on the WebPages listed below my signature.

I have one sibling, my brother (who is not on this list), and

he turned 19 in August and has SMA-II also. We still live at home

with my parents, grandma (mom's mom), and our beloved cat, Lucy. My

brother, , doesn't have these issues about being disabled like I

do, and I thank God he doesn't. I pray he never will. But we are

close and help each other out when it comes to issues like this. He

often wants to cheer me up and does so by being a goofball. He can

often annoy the hell out of me, but I'd give my life for him. We're a

close family and we've always been, thank God.

About my recent dental surgery:

Yes, I am going to have dentures made. But I think I won't be fitted

for them before Christmas. The oral surgeon told me I have to wait 2

months, then I can have impressions made of my gums, and it will take

over a month for the dentures to be made. I'm still sore, still

dizzy, still weak, and still in my pity-mode.

Again, thank you so much for all your incredible responses. It truly

helped me re-think my situation and my place in this world.

God Bless!

~ Meg ~

( <http://www.myspace.com/sexytear> http://www.myspace.com/sexytear)

( <http://360./pink-tulipameritech (DOT) net>

http://360./pink-tulipameritech (DOT) net)

[Guest guest]

For anyone who has adult onset -SMA type 4, can you tell me if you have any

siblings who are SMA but a different type? I was diagnosed Type 3. My brother

was diagnosed Adult Onset. Is this unusual? Thanks for any respobnses.

Beth

Re: Accepting Your Disability

I am 47 (soon to be 48 on Christmas Day) I have the Adult Onset of SMA (Type

4) ...I am also married for 22 years to my wonderful husband who isn't

physically challenged..I was diagnosed with SMA 2 weeks before Our 2nd Wedding

Anniversary...

WE have been through everything together...

Be Blessed..

Tomlin <sjtomlin@...> wrote:

Well said, !

Every day is different. Some days when I am in more pain or weaker it's a

struggle and I feel more depressed and I worry about tomorrow and what that

will bring. It also seems the weaker I become the more they cut back the

Home Care Services. My worst fear is ending up in a nursing home while I'm

in my 40's!!

I suffer from anxiety, depression, low self-esteem and

poor self-image also.

Who is the oldest person on this List?

Take care

Bye for now

" All that I am or I hope to be I owe to My Mother & My Father "

Mar

---------------------------------

Want to start your own business? Learn how on Small Business.

[Guest guest]

Hi Beth,

I am the youngest of 5 and the only 1 with SMA (Type 4) Adult Onset...none of

my brothers r sisters have SMA..

Beth Carollo <mbc543@...> wrote:

For anyone who has adult onset -SMA type 4, can you tell me if you

have any siblings who are SMA but a different type? I was diagnosed Type 3. My

brother was diagnosed Adult Onset. Is this unusual? Thanks for any respobnses.

Beth

Re: Accepting Your Disability

I am 47 (soon to be 48 on Christmas Day) I have the Adult Onset of SMA (Type 4)

....I am also married for 22 years to my wonderful husband who isn't

physically challenged..I was diagnosed with SMA 2 weeks before Our 2nd Wedding

Anniversary...

WE have been through everything together...

Be Blessed..

Tomlin <sjtomlin@...> wrote:

Well said, !

Every day is different. Some days when I am in more pain or weaker it's a

struggle and I feel more depressed and I worry about tomorrow and what that

will bring. It also seems the weaker I become the more they cut back the

Home Care Services. My worst fear is ending up in a nursing home while I'm

in my 40's!!

I suffer from anxiety, depression, low self-esteem and

poor self-image also.

Who is the oldest person on this List?

Take care

Bye for now

" All that I am or I hope to be I owe to My Mother & My Father "

Mar

---------------------------------

Want to start your own business? Learn how on Small Business.

[Guest guest]

I am 35, type II.

I never had big problems in accepting my disability. Sureley there

was a time (puberty) where I was sad that I can not dance or just

jump into the bus, going to see my friends. But this did not made me

really depressiv, just temporarily sad and was over soon.

I am absolutely sure I do not suffer from sadness, depressions and

self doubt, because my parents rose me equal to my able-bodied little

brother. If he had to to clear out the dishwasher, I had to sort the

cutlery into the drawer. If he had to to put the rubbish out I had to

make a call to to book seats in the cinema. They told us we have

different skills and every one of us can use them to help.

If I wanted something that was not possible at the first sight, they

made it possible for me. So I remember I wished to get rollerblades.

They gave them to me as a birthday present, put it on my feet, got

rid of the footrest, pulled me across and so I could rollerblade! BIG

FUN! :-)

With this little tricks my parents tought me a good self-confidence.

When I was about 5 years they told me, that some children at school

might say bad words to me. In this case, I should answer " But I

already can read! " .

None of the children ever talked bad to me - but nevertheless I told

them " I already can read! " *LOL*

When I was 14 I had to visit a boarding school and only could come

home at the weekends. This was a hard time but today I am glad I had

it. I HAD TO be self-confident or I would have been lost. This time

helped me a lot for my life.

In this time I noticed that other people have major problems than I.

Or, sometimes, make problems on their own. I found out that I am a

good listener and can give good advices. So this helped me, too, to

think " What a lucky person am I! " .

What else helped me a lot is a good humor. I grew up in a very funny

family. You might doubt it, but Germans can be damned funny. And this

is no joke. :-) So I think it is in my genes to see the good sites of

life and have the ability to laugh about myself.

There is only one point where I lose my self-confidence. When it

comes to date a man. Surely there were some men who were interested

in me but at this point I am shy like a little girl and behave like a

dude. This is not helpful.

On balance I can say I am good humored and self-confident old

spinster. And - not to forget - I already can read!

Camilla

>

> A Question for Everyone:

>

>

>

> How do you know whether or not you have accepted your disability?

>

>

>

> Are there any of you out there having problems with acceptance?

>

>

>

> Has acceptance come easy or naturally to any of you?

>

>

>

> I ask these questions because I've been told by a few professionals

> that the reason for my anxiety, depression, low self-esteem and very

> poor self-image is because I haven't really accepted my

disability. I

> keep saying that I have accepted it, I just hate what its done to my

> life and how others treat me. But that's the same as non-

acceptance.

>

>

>

> How do I accept it? How have some of you accepted your

disability?

>

>

>

> Is it even possible to truly accept being disabled? What does that

> mean exactly?

>

>

>

> I hope you guys will share your thoughts on this with me.

>

>

>

> I don't mean to upset anyone with these questions and I am sorry if

I

> did.

>

>

>

>

>

> God Bless!

>

> ~ Meg ~

>

> ( <http://www.myspace.com/sexytear> http://www.myspace.com/sexytear)

>

>

>

>

>

>

[Guest guest]

I was thinking about this discussion while reading a blog I stumbled onto

yesterday: http://ballastexistenz.autistics.org/ It's written by an autistic

woman who many would call low-functioning, yet she's an extremely talented

writer. Interesting reading. Among many other ideas, I noticed how she made it

clear that she doesn't consider herself to be a person trapped inside of a

disabled body. She doesn't consider her body to be confining, but a part of who

she is. To me, that sounds like true acceptance of disability. And if that's

what it takes, I don't know if I'm there. I often feel like I'm battling against

my body. Like the real me inside is desiring to do and be all these different

things, but my body just doesn't let it happen. Sometimes my body feels like my

enemy, always holding me back from the life I want to be living. Maybe that

means I haven't really reached acceptance. But then I find myself back at the

question: should I even have to accept this? Am I not supposed to want the

things that my body won't let me have? I'm ok with the idea of being happy

despite not having those things, but I think it's silly to believe I could ever

quit wishing for them.

e

Re: Accepting Your Disability

I am 35, type II.

I never had big problems in accepting my disability. Sureley there

was a time (puberty) where I was sad that I can not dance or just

jump into the bus, going to see my friends. But this did not made me

really depressiv, just temporarily sad and was over soon.

I am absolutely sure I do not suffer from sadness, depressions and

self doubt, because my parents rose me equal to my able-bodied little

brother. If he had to to clear out the dishwasher, I had to sort the

cutlery into the drawer. If he had to to put the rubbish out I had to

make a call to to book seats in the cinema. They told us we have

different skills and every one of us can use them to help.

If I wanted something that was not possible at the first sight, they

made it possible for me. So I remember I wished to get rollerblades.

They gave them to me as a birthday present, put it on my feet, got

rid of the footrest, pulled me across and so I could rollerblade! BIG

FUN! :-)

With this little tricks my parents tought me a good self-confidence.

When I was about 5 years they told me, that some children at school

might say bad words to me. In this case, I should answer " But I

already can read! " .

None of the children ever talked bad to me - but nevertheless I told

them " I already can read! " *LOL*

When I was 14 I had to visit a boarding school and only could come

home at the weekends. This was a hard time but today I am glad I had

it. I HAD TO be self-confident or I would have been lost. This time

helped me a lot for my life.

In this time I noticed that other people have major problems than I.

Or, sometimes, make problems on their own. I found out that I am a

good listener and can give good advices. So this helped me, too, to

think " What a lucky person am I! " .

What else helped me a lot is a good humor. I grew up in a very funny

family. You might doubt it, but Germans can be damned funny. And this

is no joke. :-) So I think it is in my genes to see the good sites of

life and have the ability to laugh about myself.

There is only one point where I lose my self-confidence. When it

comes to date a man. Surely there were some men who were interested

in me but at this point I am shy like a little girl and behave like a

dude. This is not helpful.

On balance I can say I am good humored and self-confident old

spinster. And - not to forget - I already can read!

Camilla

>

> A Question for Everyone:

>

>

>

> How do you know whether or not you have accepted your disability?

>

>

>

> Are there any of you out there having problems with acceptance?

>

>

>

> Has acceptance come easy or naturally to any of you?

>

>

>

> I ask these questions because I've been told by a few professionals

> that the reason for my anxiety, depression, low self-esteem and very

> poor self-image is because I haven't really accepted my

disability. I

> keep saying that I have accepted it, I just hate what its done to my

> life and how others treat me. But that's the same as non-

acceptance.

>

>

>

> How do I accept it? How have some of you accepted your

disability?

>

>

>

> Is it even possible to truly accept being disabled? What does that

> mean exactly?

>

>

>

> I hope you guys will share your thoughts on this with me.

>

>

>

> I don't mean to upset anyone with these questions and I am sorry if

I

> did.

>

>

>

>

>

> God Bless!

>

> ~ Meg ~

>

> ( <http://www.myspace.com/sexytear> http://www.myspace.com/sexytear)

>

>

>

>

>

>

[Guest guest]

Hi Beth, I think we've talked before. I am 42 and have adult onset. I have 2

brothers, both of whom do not have sma. Robin

Re: Accepting Your Disability

I am 47 (soon to be 48 on Christmas Day) I have the Adult Onset of SMA (Type

4) ...I am also married for 22 years to my wonderful husband who isn't

physically challenged..I was diagnosed with SMA 2 weeks before Our 2nd Wedding

Anniversary...

WE have been through everything together...

Be Blessed..

Tomlin <sjtomlin@...> wrote:

Well said, !

Every day is different. Some days when I am in more pain or weaker it's a

struggle and I feel more depressed and I worry about tomorrow and what that

will bring. It also seems the weaker I become the more they cut back the

Home Care Services. My worst fear is ending up in a nursing home while I'm

in my 40's!!

I suffer from anxiety, depression, low self-esteem and

poor self-image also.

Who is the oldest person on this List?

Take care

Bye for now

" All that I am or I hope to be I owe to My Mother & My Father "

Mar

---------------------------------

Want to start your own business? Learn how on Small Business.

[Guest guest]

Thank you and Robin for your reply. I'm sorry if I am repeating myself.

Apparently, you both are the only child effected by SMA. Your siblings are not.

If anyone has SMA of any type and has a sibling with SMA which is a different

type- could you let me know. I have type 3- my brother was diagnosed with adult

onset back in Pennsylvania. However, my neurologist here in Phoenix does not

feel my brother has an accurate diagnosis. I would like to know if it is rare

for one child to have one type of SMA and a sibling to have another type. Thank

you in advance!

Peace to You,

Beth

P.S. and Robin- would you mind letting me know what your limitations are as

you both have adult onset- I would like to see if my brothers symptoms are

similar? Also, could you explain how your progression has been? Thanks so

much.

Re: Accepting Your Disability

I am 47 (soon to be 48 on Christmas Day) I have the Adult Onset of SMA (Type

4) ...I am also married for 22 years to my wonderful husband who isn't

physically challenged..I was diagnosed with SMA 2 weeks before Our 2nd Wedding

Anniversary...

WE have been through everything together...

Be Blessed..

Tomlin <sjtomlin@...> wrote:

Well said, !

Every day is different. Some days when I am in more pain or weaker it's a

struggle and I feel more depressed and I worry about tomorrow and what that

will bring. It also seems the weaker I become the more they cut back the

Home Care Services. My worst fear is ending up in a nursing home while I'm

in my 40's!!

I suffer from anxiety, depression, low self-esteem and

poor self-image also.

Who is the oldest person on this List?

Take care

Bye for now

" All that I am or I hope to be I owe to My Mother & My Father "

Mar

---------------------------------

Want to start your own business? Learn how on Small Business.

[Guest guest]

I'm 40 and type 2. My neice is 12 and type 2.