Re: Counting blessings

[Guest guest]

In a message dated 11/7/2003 12:38:36 AM Pacific Standard Time,

MDL1031@... writes:

> blessing in disguise because I would never have been where I am now if that

> had

> never occured...

Hi ,

Amid the crisis in my friend Jeannie's life and her terrible illness, we have

found countless blessings. I guess, since we can't see the big picture, we

have to stay aware of His workings in our lives. I like the way you are

counting your blessings!

Hugs and blessings, Ann

[Guest guest]

Holli - Don't count your niece out yet. She may indeed walk again. She

needs every bit of positive energy she can get. Send it her way.

Amazing things have been accomplished by people who were told they

would never walk again. Never say never.

I was told many, many years so I'd end up with a catheter and have no

control of my bowels or bladder. Wrong. My parents were told I

wouldn't live past 12. Wrong! I know so many people with CMT who have

hear predictions from doctors and proved them wrong. No one should

ever predict for others. No one knows another person's heart and

ability to fight.

Cheers!

C.

On 4-Jan-11, at 12:28 PM, hmm_md wrote:

> It's often tempting to feel sorry for myself, wish I could excercise

> more, wonder if I'll be in a wheelchair someday... then something

> happens to make you realize that life is pretty good right now and

> just enjoy the now and not worry so much about the future.

>

> This New Year's weekend my neice and her boyfriend left her mother's

> house to travel back to college. The roads were snow packed but they

> are seasoned winter drivers. Shortly after they left, a woman

> driving the opposite direction, on her way home to California, lost

> control of her car. Collin (the bf) tried hard to miss her but hit

> head on into the passenger side of the other car. The California

> woman died instantly. My neice was life flighted to Portland, OR and

> has been through 2 surgeries, has severe spinal cord injuries,

> perforated bowel, broken legs and a torn aorta. We are finally

> breathing easier that she will pull through, but her mother told me

> last night that she will certainly be in a wheelchair the rest of

> her life.

>

> Wow. Last week I could have been envious of this athletic girl,

> putting herself through college with the National Guard. I will be

> walking much longer than she will. I'll still be able to climb

> stairs for quite some time. I should not ever feel sorry for myself.

> And I do count among my blessings that she is alive and her mind has

> not been injured. She is as feisty and intelligent as she always was.

>

> Holli

>

>

>

[Guest guest]

Thanks Holli for the post. I feel the exact way someday but don't seem to get

in my happy place. So easy to feel sorry as you see yourself getting worse and

worse each year. Its been better since 2011 has arrived. I for one was glad to

see 2010 go away. Bring on 2011, Happy New Year Holli.

Thanks

Matt

Counting blessings

It's often tempting to feel sorry for myself, wish I could excercise more,

wonder if I'll be in a wheelchair someday... then something happens to make you

realize that life is pretty good right now and just enjoy the now and not worry

so much about the future.

This New Year's weekend my neice and her boyfriend left her mother's house to

travel back to college. The roads were snow packed but they are seasoned winter

drivers. Shortly after they left, a woman driving the opposite direction, on her

way home to California, lost control of her car. Collin (the bf) tried hard to

miss her but hit head on into the passenger side of the other car. The

California woman died instantly. My neice was life flighted to Portland, OR and

has been through 2 surgeries, has severe spinal cord injuries, perforated bowel,

broken legs and a torn aorta. We are finally breathing easier that she will pull

through, but her mother told me last night that she will certainly be in a

wheelchair the rest of her life.

Wow. Last week I could have been envious of this athletic girl, putting

herself through college with the National Guard. I will be walking much longer

than she will. I'll still be able to climb stairs for quite some time. I should

not ever feel sorry for myself. And I do count among my blessings that she is

alive and her mind has not been injured. She is as feisty and intelligent as she

always was.

Holli

[Guest guest]

As a wheelchair-user who is living a very full, productive, and even happy life

(and who was a high school prom princess who always thought that wheelchair use

would be the WORST thing that could happen to a person) I want to add an

encouraging word that " wheelchair " doesn't have to mean a bleak future. Walking,

while good, isn't the only way to live well. I so hope she DOES experience

phenomenal healing beyond the doctors' prognosis, but I also hope whatever the

outcome that she is surrounded by people who will reassure her that while her

life might be different than she planned, it can be very good. I'm betting her

feistiness and intelligence are going to be great assets whatever comes, whether

that means a feisty climb back to walking or a feisty climb to living well in a

wheelchair.

All my Best,

Lynna

[Guest guest]

Amen to this Holli. And 's right, she may walk again. Medicine and

biotechnology have expanded so much and looks like it will just keep on growing.

If her spirit stays strong, she'll come out of this a winner in more ways than

one.

As for CMT, when I was 27 a neurologist told me I'd be needing a wheelchair by

the time I was 30 due to CMT progression. (HA - Here I am, 28 years past that BS

and still standing up, living strong, everything is an adventure!) If I need a

wheelchair or scooter to stay independent, then I certainly have no reservations

about using one.

Oh, and Holli, that was a neuro at UCLA who falsified his research and

subsequently fired!

Please try not to worry about CMT and what your future holds. That worry is just

more stress, let it gooooooooooo and everyday make it a point to smell a new

flower everyday (yes, even in all this mud!)

Hope we can connect face to face in 2011!

Gretchen

[Guest guest]

Hi Holli,

Well, I can certainly relate to your experiences. With my father and older

sister ahead of me in the progression of CMT, I have a very visible indication

of what could happen to me. (Yes, I know it is not the same for every person

even in the same family, but still I've watched them and known that we all have

the same thing since I was a little kid). It has been difficult for me

sometimes to separate myself from them and not assume that my outcome will be

the same as theirs, and at the same time of life.

Last June a friend fell off her horse and broke her back and was paralyzed from

the chest down. I happened to be going through one of my " poor me, I have CMT

and it's only going to get worse " phases when this accident happened. It amazed

and humbled me to see the strength and acceptance that this woman has shown

almost since the moment of the accident.

I still have my moments, but when I do, I think of her and manage to snap out of

it a little faster than before. I like how you put it: " just enjoy the now. "

In the meantime, I'll be keeping your niece in my thoughts.

>

> It's often tempting to feel sorry for myself, wish I could excercise more,

wonder if I'll be in a wheelchair someday... then something happens to make you

realize that life is pretty good right now and just enjoy the now and not worry

so much about the future.

>

> This New Year's weekend my neice and her boyfriend left her mother's house to

travel back to college. The roads were snow packed but they are seasoned winter

drivers. Shortly after they left, a woman driving the opposite direction, on her

way home to California, lost control of her car. Collin (the bf) tried hard to

miss her but hit head on into the passenger side of the other car. The

California woman died instantly. My neice was life flighted to Portland, OR and

has been through 2 surgeries, has severe spinal cord injuries, perforated bowel,

broken legs and a torn aorta. We are finally breathing easier that she will pull

through, but her mother told me last night that she will certainly be in a

wheelchair the rest of her life.

>

> Wow. Last week I could have been envious of this athletic girl, putting

herself through college with the National Guard. I will be walking much longer

than she will. I'll still be able to climb stairs for quite some time. I should

not ever feel sorry for myself. And I do count among my blessings that she is

alive and her mind has not been injured. She is as feisty and intelligent as she

always was.

>

> Holli

>

[Guest guest]

Thanks for the kind words everyone. , you're right, and I've pointed this

out to the rest of the family. On balance, I don't want to give them unrealistic

hope. We don't know the extent of the spinal cord injury but I'm told that what

we do know at this point is that it is fairly low (lumbar) and there are

multiple injuries. Multiple injuries does not bode well but depending upon how

low the injury is, she may be able to regain function of upper thigh muslces...

too early to tell at this point.

Lynna your points are very well taken, too. I know that if I get there it will

be fine and I will probably welcome it eventually. For my neice, a young,

athletic, energetic person in a highly physical job, it's a shock to have to

suddenly adjust to. Knowing her, though, she will make the best of whatever

situation she is confronted with and will likely go on to excell and continue to

be a high achiever. Her mother is also taking this all in stride, practical and

pragmatic. She is so grateful that her girl is still with us and that she didn't

have head or neck injuries that she is glad to deal with what comes next.

I don't often feel sorry for myself but for my own sanity I allow it now and

again. I actually give myself permission to wallow for a specified time (an hour

or a day depending) and then I pull myself together and take a deep breath and

go on with life. I had just given myself a few hours of wallowing time before

getting this news. That sure put things into perspective!

Holli

[Guest guest]

Hello Holli,

I am sending good thoughts to your niece for easy healing.

Thanks Lynna, too, for your perspectives on wheelchairs. I wish that I didn't

have the emotional baggage around wheelchairs and could see them as another tool

instead of some dreaded fate. I would make life easier for myself if I weren't

so stubborn and let myself use wheelchairs for zoos and museums.

Life is dynamic and beautiful no matter how we get from place to place.

Holli, what I took from your story is that we never know what's around the bend.

I can be tempted to imagine life without CMT and how amazing that life would be,

but then I see how unexpected life is for many people, and to count my blessings

with the cards I've been dealt.

Again, good thoughts for your niece and I hope that her road takes a better

turn.

Lenka

[Guest guest]

Hi Holli,

I can't put myself in your niece's shoes... in one instant being eminently

able-bodied, the next with spinal injuries potentially necessitating wheelchair

use. No doubt, the transition will likely be complex and difficult, I would

imagine, at times.

I think I wrote largely because I know my own struggle and fears as my CMT

progressed. First it was trying to hide the limp and awkward gait. Then it was

using a really cool hiking staff and hoping people would just think I was an

avid outdoors enthusiast. (Denial can be very powerful.) Then it was the shame

of openly using a cane. (Unmerited shame.

Now I know there is nothing shameful about using tools that help... but, at one

time it was excruciatingly difficult.) Then, it was using a wheelchair for the

first time at a Lowe's. (I felt like dying. It was horrible. I felt so exposed

and so damaged.) Then it was using forearm crutches and not being able to deny

or to hide for even one second that I had a disability, and now to using a

wheelchair most of the time... AND being entirely comfortable with it, safe,

content, active, mobile, free, sexy and healthy.

Back when I was 12 and when the neurologist told my parents I would be in a wc

by college, that sounded like a death sentence. It was always the looming axe

waiting to fall to ruin my life. The thing I feared more than anything else in

my entire life. (The neurologists were completely wrong in their timeline. I was

very active well into my thirties.)

While using a wheelchair can be very difficult at times (mainly because of

inaccessible architecture), it is NOTHING like what I had once feared. I have

more friends, more of a social life, more self-esteem, and do more in the world

for good than I ever did when I was relatively able-bodied. It may sound like

hollow words, and maybe even unimaginable to those of you who are still

relatively ambulatory, but wheelchair use does not have to be feared. (I don't

mean to ignore or to minimize the stigmas and marginalization that do exist...

just to say that I haven't experienced them as being particularly significant.

There are PLENTY of people who do NOT stigmatize disability.

We can do alot to lessen that fear for each other. By stopping the use of

language like " wheelchair-bound " , and by stopping our assumptions that walking

equates with better, and walking well is the best of all. I also think we need

to stop the kind of thinking that says, " Well, at least I'm not..... fill in the

blank. " This assumes that there is a hierarchy of disability wherein the more

physically limited one is, the worse off they are. (That old, " I felt sorry for

myself until I met the man who had no legs, thing. That man who has no legs

might be incredibly healthy and happy. And besides that, he might resent being

the object that makes somebody else feel better.)

I don't want to sound like I am saying that everybody should use a wheelchair.

God forbid. To stay active and ambulatory as long as possible is a great goal...

it's just that I went a long time with my life diminished when I could have

lived more fully using the tools that were available and I didn't out of a

misguided shame and the fear that I would be rejected and my deeply ingrained

notion that wheelchair use might be even worse than death.

I have alot of power to affect the way people perceive me in my wheelchair.

Because I am self-accepting and at ease with using a wheelchair, other people

are free to be at ease too. I repeat (because I think this is the thing people

fear the most): I have more friends, more freedom, and more joy in my life than

I had when I was trying to pass for " normal " .

If you've experienced grief over not being able to participate fully in

activities (like going to the zoo with your kids, or ...), I encourage you to

find a safe place (maybe a nearby town where you don't know anybody) and use a

store wheelchair or scooter. Observe how you feel. Celebrate that you survived

it. Go back and do it again. See if it doesn't get easier. Begin to take a

little pride in giving something a try that is incredibly difficult (at first),

but doing it for love's sake... love of self.

Oh, and Holli, I think you sound very wise to allow yourself time to grieve and

to not allow the grieving to overrun your life. Disability is difficult, and we

do need to cry. But life is rich and full, and we need time to laugh and to

enjoy, too! Sounds like you do that!

Best,

Lynna

[Guest guest]

Dear Lynna,

Thank you for sending such a wonderfully worded email. I am going to keep

this and re-read it from time to time. There is alot of wisdom in what you

shared. I am challenged with not only CMT, but also hemifacial spasm- which

is a much more noticeable physical problem in my case. My husband often

gets frustrated with me when I say things which he identifies as

" comparative blessings " (... I am thankful I have this- it would be worse if

I had that) kind of reasoning. Your email gave me alot to think about.

Thanks.

Blessings,

Barb

[Guest guest]

Hi Lynna,

I haven't been on here in awhile, just too busy caring for my

grandsons. I also began to feel that spending too much time on here made

me focus more on my condition instead of just getting on with life. I

just decided to check it out today & came across your message. I loved

it! It's something I've experienced too since I'm in my 50's. I too

spent too many years not enjoying life as well as I could have because I

refused to use tools to make it easier. I wasted the last few years that

I was able to drive not going anywhere that I couldn't find a shopping

cart to hold on to as I made my way across the parking lot...that didn't

give me much choice...Walmart or grocery store. In those days a simple

cane would have allowed me to have so much more freedom but I wasn't

about to let anyone see me using a cane. Like you, I pretended to be

normal while cheating myself out of enjoying so much more of life.

When my husband & I went out, I was attached to his arm constantly

to keep my balance. At the airport a few years back a nice lady gave me

her luggage cart she no longer needed...I guess my attempt to look

normal had failed. Having that cart made me feel so good...not only did

I no longer need to be hanging onto my husband but I could be helpful

with the luggage. The poor guy always had his hands full carrying

everything & trying to help me. I decided that day I'd use whatever

equipment I needed to make life easier for myself & my husband. I use a

walker at home & on short outings & a scooter for longer ones. While on

vacation a few years ago, we met a woman who had knee surgery using a

scooter. We decided to rent one & I never felt more free. I could go

anywhere I wanted...that the scooter could go on, of course... & actually

enjoy the scenery instead of constantly looking at the ground to avoid

tripping. Having a grown daughter who is a Disney fanatic, we go to

Disney World a lot & 2002 was the last time I walked it. That was NOT an

enjoyable trip, I can't believe I put myself through that. I ended up

buying a scooter since rental adds up & you have it to use at the

airport...much less stressful than trying to rush around on foot, which

was always hard even when I could get around better.

Your message is so important for people with CMT. Don't waste time

when you're semi-mobile limiting yourself by refusing to use whatever

you need. I still feel a little uncomfortable using the walker in public

because I feel like I look more like an old lady using it but I'm

getting used to it. I wish I could go back & do things differently. I

use a stroller with my grandkids & I remember as a young mother I

struggled carrying an infant around & worried so much that I'd trip &

drop them. I wonder now why I never thought of using a stroller back

then? So many tools could have made life easier but we wait until we're

desperate before using them, missing out by refusing to use them.

I'm glad I read your message & I hope everyone with any kind of

disability remembers that you don't have to fear getting worse if you're

fortunate enough to have a wonderful family to help you & the right

tools. Life can still be great!

>

> Hi Holli,

>

> I can't put myself in your niece's shoes... in one instant being

eminently able-bodied, the next with spinal injuries potentially

necessitating wheelchair use. No doubt, the transition will likely be

complex and difficult, I would imagine, at times.

>

> I think I wrote largely because I know my own struggle and fears as my

CMT progressed. First it was trying to hide the limp and awkward gait.

Then it was using a really cool hiking staff and hoping people would

just think I was an avid outdoors enthusiast. (Denial can be very

powerful.) Then it was the shame of openly using a cane. (Unmerited

shame.

>

> Now I know there is nothing shameful about using tools that help...

but, at one time it was excruciatingly difficult.) Then, it was using a

wheelchair for the first time at a Lowe's. (I felt like dying. It was

horrible. I felt so exposed and so damaged.) Then it was using forearm

crutches and not being able to deny or to hide for even one second that

I had a disability, and now to using a wheelchair most of the time...

AND being entirely comfortable with it, safe, content, active, mobile,

free, sexy and healthy.

>

> Back when I was 12 and when the neurologist told my parents I would be

in a wc by college, that sounded like a death sentence. It was always

the looming axe waiting to fall to ruin my life. The thing I feared more

than anything else in my entire life. (The neurologists were completely

wrong in their timeline. I was very active well into my thirties.)

>

> While using a wheelchair can be very difficult at times (mainly

because of inaccessible architecture), it is NOTHING like what I had

once feared. I have more friends, more of a social life, more

self-esteem, and do more in the world for good than I ever did when I

was relatively able-bodied. It may sound like hollow words, and maybe

even unimaginable to those of you who are still relatively ambulatory,

but wheelchair use does not have to be feared. (I don't mean to ignore

or to minimize the stigmas and marginalization that do exist... just to

say that I haven't experienced them as being particularly significant.

There are PLENTY of people who do NOT stigmatize disability.

>

> We can do alot to lessen that fear for each other. By stopping the use

of language like " wheelchair-bound " , and by stopping our assumptions

that walking equates with better, and walking well is the best of all.

I also think we need to stop the kind of thinking that says, " Well, at

least I'm not..... fill in the blank. " This assumes that there is a

hierarchy of disability wherein the more physically limited one is, the

worse off they are. (That old, " I felt sorry for myself until I met the

man who had no legs, thing. That man who has no legs might be incredibly

healthy and happy. And besides that, he might resent being the object

that makes somebody else feel better.)

>

> I don't want to sound like I am saying that everybody should use a

wheelchair. God forbid. To stay active and ambulatory as long as

possible is a great goal... it's just that I went a long time with my

life diminished when I could have lived more fully using the tools that

were available and I didn't out of a misguided shame and the fear that I

would be rejected and my deeply ingrained notion that wheelchair use

might be even worse than death.

>

> I have alot of power to affect the way people perceive me in my

wheelchair. Because I am self-accepting and at ease with using a

wheelchair, other people are free to be at ease too. I repeat (because

I think this is the thing people fear the most): I have more friends,

more freedom, and more joy in my life than I had when I was trying to

pass for " normal " .

>

> If you've experienced grief over not being able to participate fully

in activities (like going to the zoo with your kids, or ...), I

encourage you to find a safe place (maybe a nearby town where you don't

know anybody) and use a store wheelchair or scooter. Observe how you

feel. Celebrate that you survived it. Go back and do it again. See if it

doesn't get easier. Begin to take a little pride in giving something a

try that is incredibly difficult (at first), but doing it for love's

sake... love of self.

>

> Oh, and Holli, I think you sound very wise to allow yourself time to

grieve and to not allow the grieving to overrun your life. Disability is

difficult, and we do need to cry. But life is rich and full, and we need

time to laugh and to enjoy, too! Sounds like you do that!

>

> Best,

> Lynna

>

>

>

>

>

>

>

[Guest guest]

Hi Barb,

Thanks for this wonderful response. It was only after I became acquainted with

an online group of people with disabiltiies that I began to realize how much I

put people on rungs of the disability ladder. It was quite eye-opening to

realize that many people I had formerly considered " more disabled " than me (some

with quadriplegia, for example) were light-years healthier than me in terms of

productivity, self-acceptance, spiritual maturity, etc. It taught me that a

blessings/curses can sometimes be backwards, and that sometimes " tragedy " can be

something that leads to maturity and, even, a better life. As for " comparative

blessings " ... I don't do that as much as I used to, as a result, and also as a

result of being in groups with gorgeous, able-bodied folks, who seemingly had

the world by the tail, but who were very, very broken. I realized that we're all

just " glorious ruins " making our way through life, needing one another, and

hopefully learning what we need to learn in order to love better.

Thanks again for this day brightener!

Lynna

[Guest guest]

Wow Jan!

You described very well what it was like to try to " be me " before I began using

" hardware " to help... holding onto my (now ex) husbands arm in order to walk,

running my hand along the wall for balance, trying to walk at a fast clip

through an airport to make a connection (and falling on the rough carpet and

boarding the next flight with blood running from my mangled knees... most

vacations invariably resulted in mangled knees... I think all our vacation

photos show me with large white bandages where I had fallen.

Once at Yellowstone, I ended up at the Park Service's clinic where they removed

tons of gravel that went almost to the bone after I fell on a trail to a geiser.

Sorry, this may be TMI (too much information, for those of you who don't have

teens!))

Anyhow, I could relate very well to your descriptions, and I hope others will

read this and have little lightbulb moments that maybe there is hope for

well-being after wheelchair (scooter, braces, crutches, etc.) and maybe, too, a

realization that limping along, falling unnecessarily, etc. may not be the best

choice for self-care.

Somebody once asked me, " You wear gloves when it's cold outside. Why won't you

wear braces to help you walk better? " Of course, gloves don't carry a stigma,

which is why I've had to teach myself to be proud of myself for being courageous

enough to give crutches/wheelchair etc. a try.

One last little thought: You talked about not enjoying the " old lady "

association with a walker. I combat the " invalid " association with wheelchair by

occasionally wearing low-cut tops (nothing too revealing, but still projecting

the message that I am sexy) and short skirts with tights and high-heeled shoes.

(Yes, in a wheelchair, IT IS POSSIBLE TO WEAR CUTE SHOES! A definite plus!!!!!!)

Blessings,

Lynna

>

>

>

>

[Guest guest]

Hi Lynna:

As a child I had chronically bruised and cut up knees. They

never healed because there wasn't time between falls. My knees are

still scarred from gravel. For many years I fell at work, fell going

down stairs, crossing roads, collapsed for no reason except that my

knees gave out and finally, around 45, after canes, and a walker I

began using a scooter so could get to class without being knocked down

when I returned to university.

I've now used a scooter for more than 20 years indoors and out and I

always do my best to look my best. I keep a smile on my kisser and try

to project well-being and intelligence although it's difficult

sometimes;) I'm fairly well-known around our city because I've written

a newspaper column on disability for 14 years. Women stop me all the

time at the local shopping centre and tell me that they love what I

write.

I enjoy knowing that I'm making a difference and I want to look

good so as not to have their idea of a " disabled " woman (me) as not

caring about how I look. I've seen too many huge women dressed all in

black in electric wheelchairs looking like great motorized lumps. It's

sad.

At 68 I'm on track to lose 20 pounds to look trim and would love

to be the poster girl for senior's with disabilities. Why not?

I'd love to wear smart Italian boots on my scooter but my ankles are

fused and I can't get them on and if I had to get up to transfer to

the toilet I wouldn't be able to. When your ankles and feet are fused,

they are fixed with bone, screws and staples in one position. You'd

have to break the fusions to make them fit into a shoe with a high

heel. Not. I wear high custom-made lace up boots and they are nice but

not exactly what you'd call stylish.

I'm thankful for my scooter, zooming into a room with a big smile (I

actually got six of my front teeth crowned last year as I'd knocked one out

falling when in my 20s and the replacement never really matched)on my face,

giving awards (or receiving them) on my scooter, lecturing and guest speaking,

attending or running meetings, shopping, out taking pictures, and meeting

people...all on my scooter.

I drive a

Braun Entervan and can drive that scooter right into it. I love it.

Last week a fellow with what looked like a broken foot and on crutches

wanted to hold a door for me. He insisted. As I went through on my

scooter I smiled and said, Thank you, and, You need a scooter. He said

he really wished he had one as he was obviously struggling. As I drove

off I said, You can rent one, you know. Stereotypes can be changed.

You can be the one that helps people see the person behind the

disability by your attitude and they'll ignore your walker, wheelchair

or scooter. I'm a bit too old to be tastefully sexy but I can be

interesting and fun and my girlfriend says I look " damned good, girl " .

Hugs,

L.

> >

> >

[Guest guest]

,

I found your letter to be delightful! I certainly hope 68 is not too old to be

" tastefully sexy " because I have every intention of being a femme fatale at that

age! (I am currently 49, and am only just now " finding my own " .) I am in so much

agreement with you that we have the ability to change stereotypes. It has been

my experience that I make people feel really good about themselves when I am

" turned out " . With a cute haircut and hilights, carefully applied makeup,

unexpectedly attractive fashion, and great accessories, I challenge the status

quo... no longer do people dismiss me as " that poor crippled woman " ... the

dynamics become more complex. (I'm still learning and observing.

This is a fairly recent change for me. I've lost 50 pounds in the past year and

went from pretty dumpy to realizing that I am a beautiful, sexy woman and

enjoying the experience of dressing/grooming accordingly.) When I see people I

haven't seen in several months, it is almost comical. They fall all over

themselves to tell me how great I look. Not " great for a crippled woman " great,

but the kind of great where people say, " Seeing how you are transformed has made

my day! " It's rather remarkable to have this kind of power... and from a

wheelchair. I never would have thought it possible.

A friend of mine has observed that there is an almost ubiquitous " uniform " for

people with disabilities: Sweatshirts (often with cute animals... kittens or

puppies, usually), jeans, and sneakers. I am having a blast expanding the

fashion vistas and enjoying the experience of being unexpected (but tasteful) in

my fashion expression. I especially love wearing skirts that hit a few inches

above my knee. (I used to wear nothing but black pants.)

I am having so much fun experimenting with fashion and much like a phoenix

rising from the ashes, I am enjoying the rebirth of the woman within. It's

lovely to find that a wheelchair did not mean she had to die... actually, it was

the wheelchair (after years of stumbling around and falling) that allowed her to

find her graceful and lovely expression.

So, go out with all your 68 year-old power and beauty and rock the world!

Blessings,

Lynna

>

> >

[Guest guest]

Hi, Lynna. You said it. I still keep the girls up and get the hair

colored and highlighted and do my own nails, keeping them fairly long.

Just last year I even had an older man, 78, smitten with me to the

point where my husband started noticing and our friendship had to be

curtailed. ly, after 30 years of marriage, I enjoyed the

additional attention as a woman, not a disabled woman.

My husband has become more of a caregiver than a lover and that's not fun. I'd

love more fun but he's only one person and I love him dearly. There's a fine

line between lover and caregiver and it's a hard one to balance.

So you can see why being even tastefully sexy at my age can cause

problems. Older men get interested and I enjoy the attention (who

wouldn't) and my marriage can be in trouble if I send signals that I'm

also interested. I could be a really fun date if were single. Know

what I mean?

However, back in real life, my husband and I have a

good marriage. He does everything in his power to make me happy and

comfortable and there are some things you don't fool with. I may look

good but the reality of looking after this aging CMT body is that it

takes work and a lot of help and all the things I have around the

house that keep me going. No one but he and I know what we really do

to keep ourselves going and no one attracted to me because they think

I'm sexy would ever be able to cope with the realities of CMT because

it isn't at all sexy.

But, a lovely smile, a ready laugh and a fast

wit can be just as sexy as any body and I have been known to flirt

with good looking men just for the hell of it. It's hard not to.

I'd love to shop in NYC or even Toronto (only 65 miles away) because

really well-designed quality clothing make me feel and look like a

million bucks. I think some shopping in Toronto is due when I lose

another 15 pounds. It's happening.

Congrats on your weight loss.

That's terrific! I find that every cent spent on one good piece of

clothing is worth it. Buy cheap and buy often, buy quality and buy once.

Cheers!

L.

On 12-Jan-11, at 10:40 AM, Lynna wrote:

> ,

>

> I found your letter to be delightful! I certainly hope 68 is not too

> old to be " tastefully sexy " because I have every intention of being

> a femme fatale at that age! (I am currently 49, and am only just now

> " finding my own " .) I am in so much agreement with you that we have

> the ability to change stereotypes. It has been my experience that I

> make people feel really good about themselves when I am " turned

> out " . With a cute haircut and hilights, carefully applied makeup,

> unexpectedly attractive fashion, and great accessories, I challenge

> the status quo... no longer do people dismiss me as " that poor

> crippled woman " ... the dynamics become more complex. (I'm still

> learning and observing.

>

> This is a fairly recent change for me. I've lost 50 pounds in the

> past year and went from pretty dumpy to realizing that I am a

> beautiful, sexy woman and enjoying the experience of dressing/

> grooming accordingly.) When I see people I haven't seen in several

> months, it is almost comical. They fall all over themselves to tell

> me how great I look. Not " great for a crippled woman " great, but the

> kind of great where people say, " Seeing how you are transformed has

> made my day! " It's rather remarkable to have this kind of power...

> and from a wheelchair. I never would have thought it possible.

>

>

> A friend of mine has observed that there is an almost ubiquitous

> " uniform " for people with disabilities: Sweatshirts (often with cute

> animals... kittens or puppies, usually), jeans, and sneakers. I am

> having a blast expanding the fashion vistas and enjoying the

> experience of being unexpected (but tasteful) in my fashion

> expression. I especially love wearing skirts that hit a few inches

> above my knee. (I used to wear nothing but black pants.)

>

> I am having so much fun experimenting with fashion and much like a

> phoenix rising from the ashes, I am enjoying the rebirth of the

> woman within. It's lovely to find that a wheelchair did not mean she

> had to die... actually, it was the wheelchair (after years of

> stumbling around and falling) that allowed her to find her graceful

> and lovely expression.

>

> So, go out with all your 68 year-old power and beauty and rock the

> world!

>

> Blessings,

> Lynna

>

>

> >

> > >

[Guest guest]

,

 

You've made my day.  What a great posted note.  Can I ask you if you know of

any good places to stay in New York as I have promised my daughter Grace a trip?

 

Eilish

> ,

>

> I found your letter to be delightful! I certainly hope 68 is not too

> old to be " tastefully sexy " because I have every intention of being

> a femme fatale at that age! (I am currently 49, and am only just now

> " finding my own " .) I am in so much agreement with you that we have

> the ability to change stereotypes. It has been my experience that I

> make people feel really good about themselves when I am " turned

> out " . With a cute haircut and hilights, carefully applied makeup,

> unexpectedly attractive fashion, and great accessories, I challenge

> the status quo... no longer do people dismiss me as " that poor

> crippled woman " ... the dynamics become more complex. (I'm still

> learning and observing.

>

> This is a fairly recent change for me. I've lost 50 pounds in the

> past year and went from pretty dumpy to realizing that I am a

> beautiful, sexy woman and enjoying the experience of dressing/

> grooming accordingly.) When I see people I haven't seen in several

> months, it is almost comical. They fall all over themselves to tell

> me how great I look. Not " great for a crippled woman " great, but the

> kind of great where people say, " Seeing how you are transformed has

> made my day! " It's rather remarkable to have this kind of power...

> and from a wheelchair. I never would have thought it possible.

>

>

> A friend of mine has observed that there is an almost ubiquitous

> " uniform " for people with disabilities: Sweatshirts (often with cute

> animals... kittens or puppies, usually), jeans, and sneakers. I am

> having a blast expanding the fashion vistas and enjoying the

> experience of being unexpected (but tasteful) in my fashion

> expression. I especially love wearing skirts that hit a few inches

> above my knee. (I used to wear nothing but black pants.)

>

> I am having so much fun experimenting with fashion and much like a

> phoenix rising from the ashes, I am enjoying the rebirth of the

> woman within. It's lovely to find that a wheelchair did not mean she

> had to die... actually, it was the wheelchair (after years of

> stumbling around and falling) that allowed her to find her graceful

> and lovely expression.

>

> So, go out with all your 68 year-old power and beauty and rock the

> world!

>

> Blessings,

> Lynna

>

>

> >

> > >

[Guest guest]

,

I really like your style!

I used to equate " sexual attractiveness " with the ability to attract a man...

and, thus, if one had a man, it was best not to be too attractive as to garner

too much outside attention.

A friend and mentor taught me that sexual attractiveness CAN be used to atttract

male attention, but it is about something much deeper. When one has that quality

of confidence, playfulness, flirtatiousness... EVERYBODY is attracted from

little children to very aged people.

It becomes something powerful that can be used for enormous good to influence

others and to change the world. Until recently, I worked in ministry. Without

question, when I looked good and was perceived as sexually attractive (not in a

" hoochie mama " sense, but in an attractive, feminine sense), I had tons more

clout and ability to minister more effectively... people listened to me more and

cared what

I had to say. I was a better healer when I was dressed well and gave attention

to my appearance.

That's why I hope to be sexually attractive at 68 or even 88. It's about so much

more (I am learning) than attracting a mate. To be sexually attractive AND a

wheelchair user, I like to think, has some power to change the world... to

change stereotypes about disability, and maybe even to free everybody to take

enjoyment in their bodies instead of worrying about a little cellulite or any

one of a thousand other things that people are so self-critical about.

I know this is a little far afield for a CMT discussion group, but I like to

think it's relevant!

Peace,

Lynna

> >

> > >