Re: wheelchair and dating

[Guest guest]

I went to a disabled site and also non disabled and said I was seeking a

Physically disabled male for friendship. Found a wonderful guy! There is so many

single disabled GOOD LOOKING CMTers out there...come on guys don't be shy!!!

LOL.

Geri

[Guest guest]

Here is an article I wrote on Hereditary neuropathy org regarding CMT and

dating. I was a single parent for 18 years, so I definately had my share of the

issues you are describing. I found meeting someone in person and not on the

dating sites worked better for me because they could see my personality and make

the decision with seeing all of me in front of them, for better or worse. There

are some rare people out there that can see past the outside to the inside.

Don't lose faith!

From HNF-cure.org

Personal Profiles

CMT: A Disease with Many Faces, Part II: Jackie Feldman Sachs

By Christy Casamassima

Issue date: March 19 2007

Jackie Feldman Sachs, 45, is a background investigator who lives with her

husband, Iren, her 18-year-old son, , and her 14-year-old stepson, Evan, in

Owings Mills, MD. She recounts her story of getting diagnosed with CMT in her

twenties and how it impacted her early relationships, her first marriage and her

self-esteem. Despite the challenges she has faced, living with CMT and

overcoming many obstacles has allowed her to start fresh with a new husband and

a new life full of love and understanding.

At age 21 when Sachs began experiencing difficulty walking up and down stairs,

she went to neurologists to try to figure out what was wrong; prior to that

point, she was an active young woman with a love of the outdoors. It wasn't

until about three years later that they mentioned CMT, as her muscle biopsy

pointed in that direction. Over the years, her condition got worse and began to

affect her ability to get around.

Curiously, Sachs has no family history of CMT and has tested negative for CMT on

various genetic tests. Nonetheless, her doctors still believe it is CMT due to

previous EMG results. Because her case is so unusual, she is now going to the

The National Institutes for Health for further study.

We asked her how her CMT played a role in her early relationships (dating) and

then in her first marriage.

She explains, " CMT was not much of an issue prior to dating my first husband, as

I started dating him one year after doing preliminary tests. Looking back, I did

have issues when I met him because he made fun of the way I danced. We were

engaged and he broke up with me right when I was going in for the muscle biopsy

and he decided he had to think long and hard as to what life would be being

married to someone with CMT, how would it affect our vacations (he liked to

ski). In the long run, he decided that it was a minor issue. "

So they married and Sachs got pregnant a year later. Worried about passing her

CMT on to her child, she had genetic counseling done when she was four months

pregnant. Sachs recalled, " When my husband found out we had a 50/50 chance of

carrying this on, he did not come home until late, as he was thinking whether he

wanted to continue the pregnancy. When he decided we should, he assured me he

would never blame me if it carried on. " However, it was not long after the baby

was born that their marriage dissolved.

As a single parent, CMT added an additional emotional burden to Sach's life. She

says, " It affected my career choices, as I had to make sure I was home for my

son by dinner time; I did not choose jobs that required a lot of physical

challenges (hence, I did not do sales) and still try to financially swing it. "

As her son was growing up, she grew upset when she could not take her son to go

bike riding, or to the beach or anything that was too physically challenging.

She says, " My son was a very active child; it was scary when he would run away

from me and I knew I could not run to catch him before he got hurt. Many times I

could not even go to his sports game if it was at a playing field that I could

not manage. That was extremely frustrating for me, and I used to get so mad at

my body. "

Overall, she says, " It is hard enough being a single parent, but adding CMT into

the mix was a whole new set of challenges that most people in my life could not

relate to, so I was left to deal with it by myself. "

Sachs says her CMT has affected her self-esteem and state of mind over the

years, causing her to feel like an outsider. " I have gone through times where I

became extremely depressed. Most of the time, I was in denial and just lived

life. As I got weaker, so did my self-esteem. I felt like no one could ever

really love me completely, because CMT would get in the way. I also used to love

to dance, bike

ride and take long walks, and I was no longer able to do those things, so how

was I to blow off steam? I got tired of watching my friends run up a flight or

stairs or be able to go to a party and stand in the middle of the room. I always

had to sit and sometimes felt very lonely as I watched my friends run around. I

used to make up stories when I met guys as to why I walked with a cane. I am

very vain and each time I got weaker and needed more assistive devices, I would

take a downward spiral until I came to a new acceptance. "

It wasn't until she got older that she grew stronger emotionally. She says, " My

friends have constantly told me how amazing I am and how much they admire me and

how they would never be able to handle it the way I do. In time, I started to

believe them. I feel like CMT makes you more spiritual, more open-minded and

kinder to others. "

She says her greatest challenges with CMT are that she can't do everyday things,

such as shopping and cleaning, as quickly as she would like, and that she has to

rely on others for help.

On the job front, she says, CMT brings its own set of challenges; for instance,

she realized that it was getting harder and harder to work in an office

environment where she could not control the temperature; her upper body would be

warm and her lower body would be freezing. She recalls, " Sitting at a desk for a

long period of time was tiring, but I also could not walk around much, so as

everyone would go out to lunch; many times I ate at my desk to keep the energy

level for the rest of the day. "

She's learned that she has to listen to her body more and not do things that she

will pay for days later, such as scrubbing the floor or the tub. Even going to

crowded places is a huge challenge, because she worries that someone will bump

into her and she will lose her balance. Entertaining others is a trial, because

it is hard for her to remain on her feet for any extended period of time and she

cannot carry things and keep her balance at the same time. She says traveling is

also difficult, and requires her to figure out how to explore new places without

obstacles. " Going to places that are unfamiliar is scary because I just don't

know what to expect. "

When it came to dating after her divorce, Sachs said she felt intimidated

because she did not use braces or a cane back then, but knew that potential

suitors would discover her disability right away when she could not walk up a

curb or would lose her balance in a crowd. She recalls, " I found most men were

very shallow and were looking for perfection in their mate. I had several men

who were attracted to me, but no real relationships in the first 10 years after

my divorce. I did have one long-term relationship, but he went to a shrink and

talked about me and realized that although we got along great, he could not see

being with me in the long run and it hurt him too much when I fell. That was

enough for me to decide I would no longer date. "

Despite the emotional setback, she did not give up. Instead, at the urging of

friends, she turned to online dating. But, she says, " It was a huge dilemma when

filling out the profile as to what sports do you do. I couldn't decide if I

should try to hide the CMT in pictures or just take a picture with my cane. I

decided to not even try, and figured I was better off going out and meeting a

man face to face where they could see my personality with my cane and could make

a decision right there whether they wanted to pursue me or not. "

She recalls that whenever I went out with a guy and had a good time but didn't

call her again, she figured it was because of her CMT. She says, " My girlfriends

would get so mad, because when a guy didn't call them, they would say to me,

maybe he just didn't like your personality and it had nothing to do with CMT!

Hard to separate CMT from the person. "

Sachs was recently remarried after years of being single; she was introduced to

husband by a friend while listening to a favorite band in a local bar. She says,

" We hit it off immediately, but he wasn't sure he wanted to date me because we

" traveled in the same circle " and he just gotten out of a relationship. I knew

in my heart that this time CMT had NOTHING to do with his decisions. I was very

self-confident and by our second meeting, he started asking me questions about

my disability, as by now I was wearing braces, had hand controls in my car and

walked with a cane. We were very honest and all he saw was my inside and my

heart. Several weeks later, he introduced me to his 13-year-old -on who was at

first afraid to

meet me, but instantly, he never saw my disability. We were engaged three months

later. When one of my husband's relatives asked him if he was sure what he was

getting into, he stated 'Trust me, I have a lot more baggage than she does, she

just wears hers on the outside.' "

She is happy to report: " Life is MUCH better now as I finally have someone to

share the ups and downs of life with. He is so supportive and tries every day to

make my life easier. He built ramps to his house when we were first dating

because he did not want it to be hard for me to come over to see him. I am more

confident when going out, because I know I always have his arm and hands to lean

on. I used to be shy when using my wheelchair, because I did not want to be seen

as handicapped, but with him, I don't care anymore, as he makes it seem like it

is not a big deal and we were even able to take it on our honeymoon, which I

NEVER would have done in the past. Now, when I face a flight of steps, I know

that he is there to help me or even better yet, piggy back me up stairs. "

We asked Sachs if her CMT affected her sex life either positively or negatively,

and here's what she had to say: " It did affect my first marriage. When we went

to marriage counseling, he discussed that our sex life was not good as he

wanted; he told the psychiatrist that maybe the CMT affected my sex drive.

Needless to say, he could not relate that when a relationship is bad, the sex

life also gets

affected. He really played a number on my brain and my self-esteem by equating

it to CMT. The only affect CMT has on my sex life is my husband sometimes moves

my legs for me when he sees it is difficult for me to straighten my leg out. "

CMT has taken an emotional toll on many of the people we have interviewed; we

asked Sachs how her CMT has impacted her emotional well being. She said, " As I

have gotten older, I realize that CMT, with all of its challenge, can enhance

who I am. I am extremely sensitive to other people's weaknesses, whether it be

their emotional or physical challenges. I have used my challenges to teach my

son that, although life will knock you down, it is each person's responsibility

to get back up, brush it off and learn and grow. I feel like it gives me a fresh

perspective on life and its problems. I do fear the future, and when I was

single that fear was paralyzing. I do not want to be a burden to anyone and I do

have great fears that if something should happen to my husband, I would have to

re-learn how to do everything by myself. Recently, I started to worry that maybe

my son will have CMT and, although I know I can face any challenge, the thought

of my son getting this from me is more than I can bear. "

© Copyright © 2006 - HNF-cure.org

[Guest guest]

Hey I happen to be one of those good looking CMTers lol. And most of all I am

nice

I know what you mean though, I have had a hard time finding someone who I was

attracted to on those dating sites.

Andy