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Shoes. The bane of my existence. Mark, I kinda think black sneakers with a

tuxedo sounds very Hollywood. I can imagine somebody wearing them with a certain

swagger and panache. (picture somebody like Hugh Laurie at the Emmys) Hey, who

says WE can't be the trendsetters!

Lynna

From: mrwillis@...

Date: Thu, 19 Aug 2010 01:22:05 +0000

Subject: Re: in a hurry

I live every day for the day and do everything I possibly can. I know I am

limited, but there are few things I miss or wish I could do that I don't do. I

know someday walking Disney World will come down to riding a scooter, but it

will not stop being from being there beside the love of my life. (We are

regulars there). I do what I can with my sons and even though I cannot do all

the things with the young one that I did with the older one, I will not let that

stop him from having everything the older one had. I will not have regrets and

will never stop having adventures.

The one " obsession " I have... When I have had enough and have to sit for a while

when we are Disney, I find myself looking at people's shoes. It amazes me how

people can spend an entire day walking a theme park in flip flops! Imagine that!

Crocs get me too! I tried a pair once - they are like walking on marshmallows!

Problem with something that soft is how easy it is to twist the good ole ankles

in them! So the once worn marshmallows went in the trash rather than break my

neck. That is one thing that gets to me is shoes! It is not fair other people

can wear something so comfortable or nice. I've been known to wear black

sneakers with a tuxedo! How sucky is that?

Guess I got off track....

Mark

>

>

>

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I used to wear my black and white shell-toed Adidas every time i had to get

dressed up...even for my prom many moons ago and at my wedding (after the

ceremony) i wore my black and white Adidas....i thought it was stylish too!

Matt

>

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Very funny Lynna! Trendsetter? Not me. I find the plainest all black New Balance

extra-wide sneakers I can, I wear high black socks with the dark Blue Rocker

braces when I wear shorts, all so everything just blends in and is less

noticeable. The last thing I want is to stand out in any way.

Mark

>

>

> Shoes. The bane of my existence. Mark, I kinda think black sneakers with a

tuxedo sounds very Hollywood. I can imagine somebody wearing them with a certain

swagger and panache. (picture somebody like Hugh Laurie at the Emmys) Hey, who

says WE can't be the trendsetters!

>

> Lynna

>

>

>

>

>

>

> From: mrwillis@...

> Date: Thu, 19 Aug 2010 01:22:05 +0000

> Subject: Re: in a hurry

>

>

>

>

>

>

> I live every day for the day and do everything I possibly can. I know I am

limited, but there are few things I miss or wish I could do that I don't do. I

know someday walking Disney World will come down to riding a scooter, but it

will not stop being from being there beside the love of my life. (We are

regulars there). I do what I can with my sons and even though I cannot do all

the things with the young one that I did with the older one, I will not let that

stop him from having everything the older one had. I will not have regrets and

will never stop having adventures.

>

> The one " obsession " I have... When I have had enough and have to sit for a

while when we are Disney, I find myself looking at people's shoes. It amazes me

how people can spend an entire day walking a theme park in flip flops! Imagine

that! Crocs get me too! I tried a pair once - they are like walking on

marshmallows! Problem with something that soft is how easy it is to twist the

good ole ankles in them! So the once worn marshmallows went in the trash rather

than break my neck. That is one thing that gets to me is shoes! It is not fair

other people can wear something so comfortable or nice. I've been known to wear

black sneakers with a tuxedo! How sucky is that?

>

> Guess I got off track....

>

> Mark

>

> >

> >

> >

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Hey Mark,

Just wondering out loud here... I wonder if our desire to be less noticeable is

part of the problem... it reveals that we agree with the world that disability

is something that should be hidden, camoflauged, covered up. Wonder what effect

it would have on the dynamics of how the world relates to disability if we wore

it with justifiable pride (I say pride because I am proud of the things I

accomplish that ARE more difficult because of disability, and proud of the

character that it has fostered in me)?

If we took a can of silver spray paint and painted those white canvas tennis

shoes and added gold glitter and created something wow (or tacky!) that said,

these are my feet. I love my feet and I'm not gonna let fashion dictates rule my

life. I'm just saying that I'm ready to be fashionable and creative and to heck

with Madison Avenue.

Peace,

Lynna

From: mrwillis@...

Date: Fri, 20 Aug 2010 03:02:37 +0000

Subject: Re: Shoes and Fashion

Very funny Lynna! Trendsetter? Not me. I find the plainest all black New Balance

extra-wide sneakers I can, I wear high black socks with the dark Blue Rocker

braces when I wear shorts, all so everything just blends in and is less

noticeable. The last thing I want is to stand out in any way.

Mark

>

>

> Shoes. The bane of my existence. Mark, I kinda think black sneakers with a

tuxedo sounds very Hollywood. I can imagine somebody wearing them with a certain

swagger and panache. (picture somebody like Hugh Laurie at the Emmys) Hey, who

says WE can't be the trendsetters!

>

> Lynna

>

>

>

>

>

>

> From: mrwillis@...

> Date: Thu, 19 Aug 2010 01:22:05 +0000

> Subject: Re: in a hurry

>

>

>

>

>

>

> I live every day for the day and do everything I possibly can. I know I am

limited, but there are few things I miss or wish I could do that I don't do. I

know someday walking Disney World will come down to riding a scooter, but it

will not stop being from being there beside the love of my life. (We are

regulars there). I do what I can with my sons and even though I cannot do all

the things with the young one that I did with the older one, I will not let that

stop him from having everything the older one had. I will not have regrets and

will never stop having adventures.

>

> The one " obsession " I have... When I have had enough and have to sit for a

while when we are Disney, I find myself looking at people's shoes. It amazes me

how people can spend an entire day walking a theme park in flip flops! Imagine

that! Crocs get me too! I tried a pair once - they are like walking on

marshmallows! Problem with something that soft is how easy it is to twist the

good ole ankles in them! So the once worn marshmallows went in the trash rather

than break my neck. That is one thing that gets to me is shoes! It is not fair

other people can wear something so comfortable or nice. I've been known to wear

black sneakers with a tuxedo! How sucky is that?

>

> Guess I got off track....

>

> Mark

>

> >

> >

> >

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In my quest to find " shoes that would work with my feet " , I've brainstormed the

idea of having velcro surgically attached to the sole of my foot, with the

complimentary piece to all my shoes. Problem solved. Mark my words... someday

this will be an option!

Lynna

>

> >

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i wore my black and white pumas to many a black tie affair. i just coordinated

my outfit to be black and white.

at my own wedding i word Keds and decorated them with pearls and lace.

To be honest, i try not to care anymore about my shoes. I would much rather make

my face and upper body.

look good so people would not look down at my legs and feet!

jackie

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Lynne,

Funny, I have been thinking more and more along these lines since we started

this online conversation. The funny thing is, with CMT Awareness Week

approaching, I have been doing little things every day to prepare and do things

to make CMT more noticeable. For example, I have a pumpkin orange CMT t-shirt

from my good friend the Awareness Event a few weeks ago at the Altoona Curve

baseball event that I wore today and it sparked many conversations during the

course of my running around. One person did even say after asking about the

shirt that she had not noticed my braces. Maybe I do need to get out my white

knee length tube socks and where my white sneakers around and let the world ask

me about it! I think what made me wear the black socks and stuff was how often

people asked me about the soccer game. I don't know what as worse, the

embarassment for me being put on the spot that way, or the embarassment of the

other person when I told them they were braces and I would probably be in a

wheel chair without them.

I belong to a group called the Brotherhood of St. at our church (mainly

and Episcopal or Anglican Men's group for prayer, service, and study). We met

this morning and I had my pumpkin orange t-shirt on and some " What is CMT "

brochures in hand. It brought questions from our Priest. When it came time for

the members to report on activities, I told the group of our upcoming Awareness

Week " Dine out for CMT " event, and the Priest asked me to write something for

the parish newsletter. He may also use part of my story in his sermon tomorrow.

We even discussed that perhaps it may be a witness meditation material in time

for Awareness Week in September.

So I am speaking out more and more. I wonder why I am so self-conscious about

the braces?

Mark

> >

> >

> > Shoes. The bane of my existence. Mark, I kinda think black sneakers with a

tuxedo sounds very Hollywood. I can imagine somebody wearing them with a certain

swagger and panache. (picture somebody like Hugh Laurie at the Emmys) Hey, who

says WE can't be the trendsetters!

> >

> > Lynna

> >

> >

> >

> >

> >

> >

> > From: mrwillis@

> > Date: Thu, 19 Aug 2010 01:22:05 +0000

> > Subject: Re: in a hurry

> >

> >

> >

> >

> >

> >

> > I live every day for the day and do everything I possibly can. I know I am

limited, but there are few things I miss or wish I could do that I don't do. I

know someday walking Disney World will come down to riding a scooter, but it

will not stop being from being there beside the love of my life. (We are

regulars there). I do what I can with my sons and even though I cannot do all

the things with the young one that I did with the older one, I will not let that

stop him from having everything the older one had. I will not have regrets and

will never stop having adventures.

> >

> > The one " obsession " I have... When I have had enough and have to sit for a

while when we are Disney, I find myself looking at people's shoes. It amazes me

how people can spend an entire day walking a theme park in flip flops! Imagine

that! Crocs get me too! I tried a pair once - they are like walking on

marshmallows! Problem with something that soft is how easy it is to twist the

good ole ankles in them! So the once worn marshmallows went in the trash rather

than break my neck. That is one thing that gets to me is shoes! It is not fair

other people can wear something so comfortable or nice. I've been known to wear

black sneakers with a tuxedo! How sucky is that?

> >

> > Guess I got off track....

> >

> > Mark

> >

> > >

> > >

> > >

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Hi Lynna,

That sounds a bit flower power to me. It is nice in theory but reality is

different. In the real world we check out the dress /shoe code, and we are

disappointed when we can't wear what everybody else is wearing. Some of us don't

do this of course. Some people are happy that they can walk at all and if that

is in sneakers, sneakers will do with  everything.

Right now I am wearing big

sandals. They look like the indoor shoes my colleagues are wearing, so it is ok

at the office. The others change to nicer shoes when the leave but I wear

my sandals (+ braces) all the time. In winter I wear black leather shoes and

they are very neutral too. I don't even own sneakers. So it is worth while to

check out the shoe market for nicer shoes. My sandals are Otto Bock (very comfy)

and black shoes Klaveness. For snowy days Klaveness has just launched boots that

go with Blue Rocker braces (my next shoe project). I also have brown glittery

Klaveness shoes for parties.

Beata

>

>

>

>

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Dear Beata,

Thanks for responding and especially for the suggestion of shoes that might

work. I'm not sure exactly what I wrote that struck you as " flower power " and

I'm not entirely sure what you mean by flower power, but I suspect it's similar

to " pie in the sky " or " Pollyanna thinking " or something similar... that is to

say, " Yeh, nice sentiment, but we have to live in reality here, girl, not with

our head in the clouds! " Did I get that right?

Was it in reference to my saying I wasn't going to allow Madison Ave. to dictate

my life because of the shoe fashion choices that are or are not available to me?

I need you to know that I have lived under that constraint. For years, I was

TERRIFIED of seeking employment because I couldn't wear business pumps like

everybody else. I thought there was NO STINKIN' WAY I could be employed in a

professional environment and wear my canvas slip-on shoes. The only shoes I

could find that worked with my feet. My friends, ablebodied, entreated me to see

it differently. " Lynna, do you REALLY think it will matter to a boss that your

shoes aren't the norm if you do your job well? " I was not to be deterred at

that time from my thinking.

I didn't go to social events that required formal shoes. Or anywhere else where

canvas sneakers weren't appropriate. I, and I alone, limited my possibilities

due to a perception that the real world would reject me and that the dictates of

appropriate fashion were ironclad rules.

Since that time, I have learned that most people could give a flip what kind of

shoes I have on. I am bright, an interesting conversationalist, outgoing, kind,

interested in people AND I make people feel good about themselves when I am

present. (How do I know? They tell me that ALOT.) Read that again: My

self-acceptance and my interest in them is all they care about. My shoes

probably go unnoticed, or if they are noticed, it's with admiration that I don't

let not being able to wear " appropriate " shoes impede my life.

I know it sounds crazy. I once thought so, too, until I tried living in a

different reality. There is freedom from the tyranny. That's my story and I'm

stickin' with it. smile.

Yours,

Lynna

Lynna

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LYNNA,

that is exactly my story also! At age 48, i am at acceptance and have been told

over and over and over again, what i have on my feet does not define me! Of

course, i do have a black tie event coming up where i am wearing a " hot " red

dress and again the shoes have become an issue. I was just going to get some

glitter socks with traction on the bottom! (just kidding, but may bring them

along anyway for when i want to kick my braces and shoes off and try to dance!)

Jackie

Re:  Shoes and Fashion

 

Dear Beata,

Thanks for responding and especially for the suggestion of shoes that might

work. I'm not sure exactly what I wrote that struck you as " flower power " and

I'm not entirely sure what you mean by flower power, but I suspect it's similar

to " pie in the sky " or " Pollyanna thinking " or something similar... that is to

say, " Yeh, nice sentiment, but we have to live in reality here, girl, not with

our head in the clouds! " Did I get that right?

Was it in reference to my saying I wasn't going to allow Madison Ave. to dictate

my life because of the shoe fashion choices that are or are not available to me?

I need you to know that I have lived under that constraint. For years, I was

TERRIFIED of seeking employment because I couldn't wear business pumps like

everybody else. I thought there was NO STINKIN' WAY I could be employed in a

professional environment and wear my canvas slip-on shoes. The only shoes I

could find that worked with my feet. My friends, ablebodied, entreated me to see

it differently. " Lynna, do you REALLY think it will matter to a boss that your

shoes aren't the norm if you do your job well? " I was not to be deterred at that

time from my thinking.

I didn't go to social events that required formal shoes. Or anywhere else where

canvas sneakers weren't appropriate. I, and I alone, limited my possibilities

due to a perception that the real world would reject me and that the dictates of

appropriate fashion were ironclad rules.

Since that time, I have learned that most people could give a flip what kind of

shoes I have on. I am bright, an interesting conversationalist, outgoing, kind,

interested in people AND I make people feel good about themselves when I am

present. (How do I know? They tell me that ALOT.) Read that again: My

self-acceptance and my interest in them is all they care about. My shoes

probably go unnoticed, or if they are noticed, it's with admiration that I don't

let not being able to wear " appropriate " shoes impede my life.

I know it sounds crazy. I once thought so, too, until I tried living in a

different reality. There is freedom from the tyranny. That's my story and I'm

stickin' with it. smile.

Yours,

Lynna

Lynna

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Lynna.

You are so right and I have been through this before...as long as I'm comfy I

could give R.A.what people think or the code of dressing my feet!I have been

insulted on this subject before..obviously I don't have the funds that others do

on this sight and have resorted to having to ware slippers for many years

now!Not a pretty sight! What the heck is Flower Power????

Perhaps Beata can tell us!

Geri

Dear Beata,

Thanks for responding and especially for the suggestion of shoes that might

work. I'm not sure exactly what I wrote that struck you as " flower power " and

I'm not entirely sure what you mean by flower power, but I suspect it's similar

to " pie in the sky " or " Pollyanna thinking " or something similar... that is to

say, " Yeh, nice sentiment, but we have to live in reality here, girl, not with

our head in the clouds! " Did I get that right?

Was it in reference to my saying I wasn't going to allow Madison Ave. to

dictate my life because of the shoe fashion choices that are or are not

available to me?

I need you to know that I have lived under that constraint. For years, I was

TERRIFIED of seeking employment because I couldn't wear business pumps like

everybody else. I thought there was NO STINKIN' WAY I could be employed in a

professional environment and wear my canvas slip-on shoes. The only shoes I

could find that worked with my feet. My friends, ablebodied, entreated me to see

it differently. " Lynna, do you REALLY think it will matter to a boss that your

shoes aren't the norm if you do your job well? " I was not to be deterred at that

time from my thinking.

I didn't go to social events that required formal shoes. Or anywhere else

where canvas sneakers weren't appropriate. I, and I alone, limited my

possibilities due to a perception that the real world would reject me and that

the dictates of appropriate fashion were ironclad rules.

Since that time, I have learned that most people could give a flip what kind

of shoes I have on. I am bright, an interesting conversationalist, outgoing,

kind, interested in people AND I make people feel good about themselves when I

am present. (How do I know? They tell me that ALOT.) Read that again: My

self-acceptance and my interest in them is all they care about. My shoes

probably go unnoticed, or if they are noticed, it's with admiration that I don't

let not being able to wear " appropriate " shoes impede my life.

I know it sounds crazy. I once thought so, too, until I tried living in a

different reality. There is freedom from the tyranny. That's my story and I'm

stickin' with it. smile.

Yours,

Lynna

Lynna

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During my younger (and vainer) years I would wear shoes to events that were

very

uncomfortable that I could hardly walk in, then find a place to sit and not move

all evening.  I am done with that.  In stead of finding an outfit and trying

to

figure out what I can wear on my feet, I figure out what possiblities there are

for my feet then dress from the feet up.  That way I can actually enjoy myself

and not worry about embarrassing myself when I fall on my face in my cute shoes!

Cyndi

________________________________

From: Jackie Sachs <jackiesachs@...>

Sent: Mon, August 23, 2010 11:54:11 AM

Subject: Re: Shoes and Fashion

 

LYNNA,

that is exactly my story also! At age 48, i am at acceptance and have been told

over and over and over again, what i have on my feet does not define me! Of

course, i do have a black tie event coming up where i am wearing a " hot " red

dress and again the shoes have become an issue. I was just going to get some

glitter socks with traction on the bottom! (just kidding, but may bring them

along anyway for when i want to kick my braces and shoes off and try to dance!)

Jackie

Re:  Shoes and Fashion

 

Dear Beata,

Thanks for responding and especially for the suggestion of shoes that might

work. I'm not sure exactly what I wrote that struck you as " flower power " and

I'm not entirely sure what you mean by flower power, but I suspect it's similar

to " pie in the sky " or " Pollyanna thinking " or something similar... that is to

say, " Yeh, nice sentiment, but we have to live in reality here, girl, not with

our head in the clouds! " Did I get that right?

Was it in reference to my saying I wasn't going to allow Madison Ave. to dictate

my life because of the shoe fashion choices that are or are not available to me?

I need you to know that I have lived under that constraint. For years, I was

TERRIFIED of seeking employment because I couldn't wear business pumps like

everybody else. I thought there was NO STINKIN' WAY I could be employed in a

professional environment and wear my canvas slip-on shoes. The only shoes I

could find that worked with my feet. My friends, ablebodied, entreated me to see

it differently. " Lynna, do you REALLY think it will matter to a boss that your

shoes aren't the norm if you do your job well? " I was not to be deterred at that

time from my thinking.

I didn't go to social events that required formal shoes. Or anywhere else where

canvas sneakers weren't appropriate. I, and I alone, limited my possibilities

due to a perception that the real world would reject me and that the dictates of

appropriate fashion were ironclad rules.

Since that time, I have learned that most people could give a flip what kind of

shoes I have on. I am bright, an interesting conversationalist, outgoing, kind,

interested in people AND I make people feel good about themselves when I am

present. (How do I know? They tell me that ALOT.) Read that again: My

self-acceptance and my interest in them is all they care about. My shoes

probably go unnoticed, or if they are noticed, it's with admiration that I don't

let not being able to wear " appropriate " shoes impede my life.

I know it sounds crazy. I once thought so, too, until I tried living in a

different reality. There is freedom from the tyranny. That's my story and I'm

stickin' with it. smile.

Yours,

Lynna

Lynna

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I developed lymphodema in my lower legs, especially the left one, a few years

ago. Before I learned about treatment for it, my feet became so swollen that

finding ANY shoes became almost impossible. There were days that I went to work

in black socks. Let me tell you, for a woman who was a high school prom

princess, and uber-attentive to fashion and beauty, this has been an incredibly

humbling experience. Although it's been difficult, it's made me grow from a

pretty shallow person focused on the exterior, to one who has a little more

depth and who appreciates that in other people, too.

Although I am not sacrificing quality of life because I don't have the " right "

shoes to wear to events, that is not to say that I don't care what people think.

I want people to see me fashionably attired with jewelry, makeup, nice clothes

and to realize that I care about my appearance as a reflection of the regard I

have for myself. I don't try to hide or cover up my skinny calves or my

mishapen, swollen feet/ankles. By being okay with them, even honoring them, it

models for other people the attitude that disability isn't shameful. It's just

one part of the spectrum of being human. I hope to get the lymphodema under

control to be able to wear some knock-your-socks off sexy high-heeled

sandals.(That's now possible since I use a wheelchair alot of the time and don't

have to worry about trying to walk in shoes.) Until then, I wear my extra-wide

black janes most of the time, and try to dress nicely, and to wear my best

accoutrement... a nice smile and a friendly demeanor.

My experiences with disability is that the degree of rejection I've experienced

from other people due to it is DIRECTLY proportional to my degree of

self-rejection. The more I have grown to love and to value myself, including my

disabiity, the more people respond positively. I think it frees people to be

okay with disability and not to fear it so much. I let people know by the way I

carry myself that this is not something to pity or to fear. We carry within us

the power to change the world. I truly believe that.

Blessings,

Lynna

From: hotwheels@...

Date: Mon, 23 Aug 2010 13:58:08 -0500

Subject: Re: Shoes and Fashion

Lynna.

You are so right and I have been through this before...as long as I'm comfy I

could give R.A.what people think or the code of dressing my feet!I have been

insulted on this subject before..obviously I don't have the funds that others do

on this sight and have resorted to having to ware slippers for many years

now!Not a pretty sight! What the heck is Flower Power????

Perhaps Beata can tell us!

Geri

Dear Beata,

Thanks for responding and especially for the suggestion of shoes that might

work. I'm not sure exactly what I wrote that struck you as " flower power " and

I'm not entirely sure what you mean by flower power, but I suspect it's similar

to " pie in the sky " or " Pollyanna thinking " or something similar... that is to

say, " Yeh, nice sentiment, but we have to live in reality here, girl, not with

our head in the clouds! " Did I get that right?

Was it in reference to my saying I wasn't going to allow Madison Ave. to dictate

my life because of the shoe fashion choices that are or are not available to me?

I need you to know that I have lived under that constraint. For years, I was

TERRIFIED of seeking employment because I couldn't wear business pumps like

everybody else. I thought there was NO STINKIN' WAY I could be employed in a

professional environment and wear my canvas slip-on shoes. The only shoes I

could find that worked with my feet. My friends, ablebodied, entreated me to see

it differently. " Lynna, do you REALLY think it will matter to a boss that your

shoes aren't the norm if you do your job well? " I was not to be deterred at that

time from my thinking.

I didn't go to social events that required formal shoes. Or anywhere else where

canvas sneakers weren't appropriate. I, and I alone, limited my possibilities

due to a perception that the real world would reject me and that the dictates of

appropriate fashion were ironclad rules.

Since that time, I have learned that most people could give a flip what kind of

shoes I have on. I am bright, an interesting conversationalist, outgoing, kind,

interested in people AND I make people feel good about themselves when I am

present. (How do I know? They tell me that ALOT.) Read that again: My

self-acceptance and my interest in them is all they care about. My shoes

probably go unnoticed, or if they are noticed, it's with admiration that I don't

let not being able to wear " appropriate " shoes impede my life.

I know it sounds crazy. I once thought so, too, until I tried living in a

different reality. There is freedom from the tyranny. That's my story and I'm

stickin' with it. smile.

Yours,

Lynna

Lynna

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