Re: Dating/Dances/Telling about CMT

[Guest guest]

,

I know exactly the frustratioon you are feeling and sometimes i think thank

goodness i am a woman for the exact reasons you stated. People in the dating

world can generally be shallow. I did not like doing the online dating because

should i show a pic with my braces and cane, show a pic from waist up? Do i

state that i don't play sports not because i am not interested but because i

can't do the " normal " things. I really found that my best success in dating was

meeting somebody either through a friend or randomly.

Once they met me and got to see the " whole " package and the personality, the CMT

became less of an issue. I feel like on the internet dating websites, once you

mention a " weakness " you are automatically discounted before they even meet you.

I also liked meeting someone with my cane because then

i felt like i was not being deceptive and when they ask why i have a cane, i say

very matter of fact, oh, i have a neuromuscular disease. Usually they are s o

surprised

by my candor and by me dismissing it as " no big deal " that they get past it.

(not to say that they get past it if we should enter a longer term relationship)

I still feel your dilemma. I would probably mention on the phone after we have

made a meeting that by the way, ............... and if you want to change your

mind, i would understand. The best part of that way, is if they cancel, then

they really weren't worth your time. JUST BE CONFIDENT in who you are (read

below)! That's what women like!

Example: I met a guy who had undergone gastric bypass, lost tons of weight and

now was really into hiking and biking..... Met him for coffee and we proceeded

to dinner Had a lovely time. He called me the next day to say he really enjoyed

meeting me but now that he was so active, he did not want to be with someone who

could not share that with him. OK, i appreciated his honesty, but i was PISSED.

Got over it and 2 weeks later he called me and said he thinks he made  a

mistake by discounting me. I never did go out with him again. If that was his

initial thought, i did not need to be his therapist or counselor and I told him

sorry he made a mistake because I am indeed a great

catch!

I was single for a very long time; just got married 4 years ago. Met my husband

at a bar where a local band i liked was playing Had the cane in my hand and AFOs

on under my jeans. He never even asked about it and we instantly felt a

connection.  When a good friend would ask him later on how he feels about the

CMT, his response was " Believe me, I have waaaay more baggage than she does, she

just wears hers on the outside " AND that would be why i married him (lol)

Jackie

[Guest guest]

I can totally relate to this feeling, . I used to really struggle with

the question of whether to " warn " women that I walked with a cane (this is

before I got AFOs). Here's how I got over the question completely:

*Out of all of the reasons why somebody wouldn't want to date me, my having

CMT is way down the list :-) *There are so many totally valid things to

dislike about me— I use foul language, I spend too much time online, I

worry a lot, I like electronic dance music and hate country music. On the

other hand, there are so many things to like about me: I'm funny, I'm kind,

I'm friendly, I'm a good listener.

Some people think I'm attractive; some don't. Fortunately, I don't have to

decide anything about it; that's their problem. I leave it up to them to

meet me and decide. Meanwhile, my own job is to decide whether they're

attractive; in the past 15 years, I've been on lots of dates, and as often

as not I end up being the one who decides I'm not interested.

And remember: *the other person has a thing or two they'd rather tell you in

person. Everybody's got " certain details " . * An eating disorder? Two young

kids? A crazy ex? Or, as is the case with my current girlfriend, multiple

sclerosis? (She was incredibly relieved when I showed up with a cane and

explained that I have a nerve disease... she said " ME TOO! " and within five

minutes we were making out.)

After years of holding this attitude, I find that I'm more self-conscious

about my thinning hair than I am about having CMT.

Maybe someday you'll encounter someone who will reject you simply because

you have CMT. If this happens, congratulations! You've just avoided

getting involved with a narrow-minded, shallow fool. Thank you, CMT!

In terms of more general advice, I wrote this essay couple of years ago:

http://benjyfeen.com/2008/11/12/low-stakes-first-dates/

In summary, when it comes to online dating, present your best self in your

online profile, include a couple of flattering photographs of yourself doing

something you love with friends, and don't let the e-mail conversation drag

on for any longer than it takes to decide whether or not you would like to

go on a date.

I hope this is helpful, and have fun!

B

On Thu, Dec 9, 2010 at 6:12 PM, <erj66@...> wrote:

> Jackie,

>

> Thanks for sharing that. Because of CMT, I have found dances and dancing to

> be perfectly miserable experiences, mostly because the girl/woman always

> said no. I always assumed that the CMT was the controlling factor, and I

> assumed that if she did not want to dance, she certainly did not want to

> talk.

>

> Further, I knew there would be balance problems, and that she would need to

> keep us from falling on the dance floor. Its one thing for a woman to expect

> the man to be able to hold/support her while dancing, but it is another for

> a man to expect the same from a woman. She may be incapable due to sheer

> size/weight considerations, but this arrangement doesn't make a man feel

> terribly masculine.

>

> The biggest dating issue I have, is when do I tell her I have CMT.

>

> Online dating, where most of my leads come from, has the effect of turning

> the meeting process inside out: You are supposed to SEE a person first,

> experience his or her affect and vibe, thus being able to notice things like

> reasonably obvious signs of having a physical problem, and to interact, no

> matter for how long, all in order to find out IF learning more about this

> person of interest.

>

> Online, one learns a whole lot of things, which on-screen in email and pics

> look great.

>

> But then you have the question, do I tell her as part of pre- first meeting

> communication? Do I say something on the first meeting. Should I share only

> if she asks? Should I tell her in post-first meeting communication.

>

> It's becoming a very difficult problem.

>

>

>

> On Dec 9, 2010, at 2:03 PM, Jackie Sachs wrote:

>

> >

> >

> >

> >

> > usually when someone asked me to dance and they would not just take no

> thanks for an answer, i was annoyed already! I never understood why someone

> feels ok to ask you to dance but does not pursue just trying to talk to you.

> >

> > BUT, if they show they don't care about the awkwardness of dancing with

> me and i felt confident in them protecting me on the dance floor, then that

> was a BIG PLUS for them. My husband is great at taking me out on the dance

> floor and noticing when i am getting over tired. He also is good and keeping

> other rambuncious dancers away from me. The best pick up's that worked for

> me was anything that did not have to address the CMT!

> >

> > Jackie

>

>

>

>

[Guest guest]

Jackie,

Believe it or not, all of what you just said is enormously valuable, especially

about the suggestion of telling her after we have agreed on a date, but before

actually going on that date.

It is kind of a sneaky test, but it should reveal right away who is not able or

willing to see past the weaknesses of potential mates.

Thanks for sharing this.

On Dec 10, 2010, at 2:00 PM, Jackie Sachs wrote:

> ,

>

> I know exactly the frustratioon you are feeling and sometimes i think thank

goodness i am a woman for the exact reasons you stated. People in the dating

world can generally be shallow. I did not like doing the online dating because

should i show a pic with my braces and cane, show a pic from waist up? Do i

state that i don't play sports not because i am not interested but because i

can't do the " normal " things. I really found that my best success in dating was

meeting somebody either through a friend or randomly.

>

> Once they met me and got to see the " whole " package and the personality, the

CMT became less of an issue. I feel like on the internet dating websites, once

you mention a " weakness " you are automatically discounted before they even meet

you. I also liked meeting someone with my cane because then

>

> i felt like i was not being deceptive and when they ask why i have a cane, i

say very matter of fact, oh, i have a neuromuscular disease. Usually they are s

o surprised

>

> by my candor and by me dismissing it as " no big deal " that they get past it.

(not to say that they get past it if we should enter a longer term relationship)

>

> I still feel your dilemma. I would probably mention on the phone after we have

made a meeting that by the way, ............... and if you want to change your

mind, i would understand. The best part of that way, is if they cancel, then

they really weren't worth your time. JUST BE CONFIDENT in who you are (read

below)! That's what women like!

>

> Example: I met a guy who had undergone gastric bypass, lost tons of weight and

now was really into hiking and biking..... Met him for coffee and we proceeded

to dinner Had a lovely time. He called me the next day to say he really enjoyed

meeting me but now that he was so active, he did not want to be with someone who

could not share that with him. OK, i appreciated his honesty, but i was PISSED.

Got over it and 2 weeks later he called me and said he thinks he made a mistake

by discounting me. I never did go out with him again. If that was his initial

thought, i did not need to be his therapist or counselor and I told him sorry he

made a mistake because I am indeed a great

> catch!

>

> I was single for a very long time; just got married 4 years ago. Met my

husband at a bar where a local band i liked was playing Had the cane in my hand

and AFOs on under my jeans. He never even asked about it and we instantly felt a

connection. When a good friend would ask him later on how he feels about the

CMT, his response was " Believe me, I have waaaay more baggage than she does, she

just wears hers on the outside " AND that would be why i married him (lol)

>

> Jackie

[Guest guest]

Benjy,

Thanks for sharing this, and I agree with all you wrote. In fact I have been

this year twice rejected directly because of the CMT. Once because a 46 year old

first said it would be a danger to the children she wanted. I explained I have

CMT-x, which has no male-to-male transmission, and a good copy of the affected

gene sequence on her other x chromosome. Meanwhile the chances of Downs syndrome

at 46, or 48 by the time she dated, married, and tried to get pregnant are very

high: from 1:1000 @ 30 to 1:11 @ 49.

After hearing this from me, she said that it was actually something she could

not handle having her partner have, and face possibly having to care for me.

She also said that, even though our first date was immensely good, had she been

told of my problem beforehand , she would have likely gone on the first date at

all.

Needless to say I lost my interest.

The other rejected me for not having been told prior to our first date. Picking

your dating venue for the evening is important, as she picked me up from my

house and did the driving. But after an initially connecting at our first sight

of each other when she stepped out of her car, she said as she watched me walk

briefly back to the door to lock it and back to the car, she felt " clubbed over

the head, " with something I had kept from her.

I agree with your advice about online dating, but I have read advice about it

since starting it a couple of years ago.

You need to move from the email to the phone asap, and then you have to meet,

asap. Otherwise you spend a great deal of time and get your hopes up about

someone who looks and sounds good, but whose vibe you don't get, or who doesn't

get yours.

My profile is a winning one, and I have no problem getting both inquiries and

responses to my inquiries, but it is actually different now, as it has developed

with me over the years.

Thanks again,

On Dec 10, 2010, at 2:38 PM, Benjy Feen wrote:

>

> Maybe someday you'll encounter someone who will reject you simply because

> you have CMT. If this happens, congratulations! You've just avoided

> getting involved with a narrow-minded, shallow fool. Thank you, CMT!

>

> In terms of more general advice, I wrote this essay couple of years ago:

> http://benjyfeen.com/2008/11/12/low-stakes-first-dates/

>

> In summary, when it comes to online dating, present your best self in your

> online profile, include a couple of flattering photographs of yourself doing

> something you love with friends, and don't let the e-mail conversation drag

> on for any longer than it takes to decide whether or not you would like to

> go on a date.

>

> I hope this is helpful, and have fun!

[Guest guest]

,

I have a friend who spends weeks and weeks on the phone. She is very pretty and

funny. Something happens after their first 2 dates because it ends there

and then she says we were dating for weeks and just broke up. i say WHAT????? I

agree with Benjy to get a quick vibe on phone and if you want to persue,

then i guess that is the time to tell and set up date. I do hate the fact of

having to disclose somethiing so personal to someone you have not met who will

prejudge

without knowledge, but I understand their point of view too. Don't waste time

" investing " in this person like my girlfriend does.

This is why i HATE online dating, but it is hard to meet people. As far as the

40 something girl, this is why she is single and has no kids. I have an

old acquaintance that was so picky for the last 20 years that in order for him

to have kids he is going to have to date someone much younger and they

will not want a 50 year old man.

Jackie

Re: Dating/Dances/Telling about CMT

 

Benjy,

Thanks for sharing this, and I agree with all you wrote. In fact I have been

this year twice rejected directly because of the CMT. Once because a 46 year old

first said it would be a danger to the children she wanted. I explained I have

CMT-x, which has no male-to-male transmission, and a good copy of the affected

gene sequence on her other x chromosome. Meanwhile the chances of Downs syndrome

at 46, or 48 by the time she dated, married, and tried to get pregnant are very

high: from 1:1000 @ 30 to 1:11 @ 49.

After hearing this from me, she said that it was actually something she could

not handle having her partner have, and face possibly having to care for me.

She also said that, even though our first date was immensely good, had she been

told of my problem beforehand , she would have likely gone on the first date at

all.

Needless to say I lost my interest.

The other rejected me for not having been told prior to our first date. Picking

your dating venue for the evening is important, as she picked me up from my

house and did the driving. But after an initially connecting at our first sight

of each other when she stepped out of her car, she said as she watched me walk

briefly back to the door to lock it and back to the car, she felt " clubbed over

the head, " with something I had kept from her.

I agree with your advice about online dating, but I have read advice about it

since starting it a couple of years ago.

You need to move from the email to the phone asap, and then you have to meet,

asap. Otherwise you spend a great deal of time and get your hopes up about

someone who looks and sounds good, but whose vibe you don't get, or who doesn't

get yours.

My profile is a winning one, and I have no problem getting both inquiries and

responses to my inquiries, but it is actually different now, as it has developed

with me over the years.

Thanks again,

On Dec 10, 2010, at 2:38 PM, Benjy Feen wrote:

>

> Maybe someday you'll encounter someone who will reject you simply because

> you have CMT. If this happens, congratulations! You've just avoided

> getting involved with a narrow-minded, shallow fool. Thank you, CMT!

>

> In terms of more general advice, I wrote this essay couple of years ago:

> http://benjyfeen.com/2008/11/12/low-stakes-first-dates/

>

> In summary, when it comes to online dating, present your best self in your

> online profile, include a couple of flattering photographs of yourself doing

> something you love with friends, and don't let the e-mail conversation drag

> on for any longer than it takes to decide whether or not you would like to

> go on a date.

>

> I hope this is helpful, and have fun!

[Guest guest]

Already a lot of good comments on the online dating topic.  Just wanted to add

that what someone's profile doesn't say is as important as what it does say. 

It can screen out or attract the right person from the beginning.

When I met my husband on Match many years ago, it was his profile that attracted

me.  He had a couple of nice pictures and a detailed profile, but there was

absolutely no mention of sports or outdoor

activities in his profile.  A homebody who also cared about his health...it

was a needle in a haystack.  It took several years to find him, but he was

exactly what I had been searching for.

In other words...communicating your lifestyle in detail can help to screen out

the wrong matches from the start.

As far as communicating weaknesses, we didn't share our weaknesses with each

other until the second date.  If you really like someone, doing it in person

may be better.  But, it is a numbers game of sorts, so if it saves your energy

and helps to do it over the phone, that could work too.

The whole process can get discouraging.  Many times I vowed to give up and took

a needed break from it, but ultimately perseverance paid off.  Hang in there.

>

>

>

>

> usually when someone asked me to dance and they would not just take no thanks

for an answer, i was annoyed already! I never understood why someone feels ok to

ask you to dance but does not pursue just trying to talk to you.

>

> BUT, if they show they don't care about the awkwardness of dancing with me and

i felt confident in them protecting me on the dance floor, then that was a BIG

PLUS for them. My husband is great at taking me out on the dance floor and

noticing when i am getting over tired. He also is good and keeping other

rambuncious dancers away from me. The best pick up's that worked for me was

anything that did not have to address the CMT!

>

> Jackie

[Guest guest]

Hi All,

This is a subject of enormous interest to me. In my younger years, I was very

attractive and was able to hide the truth of my CMT from would-be suiters. I had

no shortage of dates/romances etc. I was married for 20 years, and our marriage

ended because of CMT. LET ME EXPLAIN, lest you jump to conclusions!!!

It wasn't because he rejected me, but because my progressing CMT forced me to

grow into a stronger woman of more depth. We grew apart and I didn't want to be

married to somebody who I felt needed to control me... I felt smothered in the

relationship.

Since that time, I've been getting on with my life. Divorcing, raising

adolescents, buying a house, going back to work... who had time to think about

dating. shew!

I'm now at a more settled place in my life and am ready to spend time in the

company of good men. Here is the thing though: I am a catch. I consider my

visible CMT to be a great asset for filtering out the duds. I don't see it as

being rejected... I see it as them not being smart enough/evolved enough/

spiritual enough to recognize value. I will only date guys who are stellar human

beings who treat me with great, great respect and tenderness. (If that means

sitting home on a Saturday night enjoying the pleasure of my own company or that

of friends, that's very acceptable as I wait.)

I'm excited about being vulnerable and completely transparent about my

disability and trust that any relationship that develops will be grounded very

solidily.

In the meantime, I work on being the best me I can be. I am losing weight (and

look pretty sexy if I might say so), I enjoy learning, I have a ton of

interests, and I am my own best friend. I kinda think I have more potential now

than every at any time in my life to be a good partner in a relationship.

Exciting times ahead,

Lynna

[Guest guest]

,

Thank you. I would actually like to find a " homebody who cares about her

health, " but there are a couple of things that you find in female profiles.

One is that women want to travel. I understand, but i have spent the second 20

years of my life traveling, in addition to all the traveling I did as a child of

an airline pilot during the first 20 years of my life. For example, i went to

college in Hawaii and grad school in the Southeast of Holland, after having a

foreign exchange experience in Germany.

Between Hawaii and Holland I travelled around then UDSA doing advance work for

Presidential candidates.

But traveling, as much as I like it, is very, very difficult and arduous, and

like many or most here, I have to do stuff at a slower pace, which tends to bore

some. Once it is made known that I am in some way genetically imperfect, there

is no more interest on the part of women who want to have children.

And I have to say that I don't look bad (assuming looks are a part of the

consideration on women's part), in fact, I have actually never, ever looked nor

felt better, both physically speaking and and about myself, psychologically

speaking.

This need and want, along with the need and want for children in those women

under 40, has seen me change the " want children, " switch from maybe to no.

I am getting an whole new demographic group, which instead of being 33-45 are

38-50, and this group does not seem so eager to dismiss.

Also, LA nis a very difficult city in which to date, as many women are also

evaluating earning power and potential... and with CMT, I don't think I'll be

bringing in a 6 or 7 figure salary anytime soon, if ever.

Yes, I don't want this kind of a woman, but when you move to LA and you don't

know what the dating pitfalls are, you are doubtless going to run into a few who

are unkind or undesirable.

And i continue to date, as I do keep hearing it's a numbers game, and I'm told

I'll know when I have found a reasonable match with long-term potential.

Thanks for sharing.

On Dec 11, 2010, at 10:35 AM, wrote:

> Already a lot of good comments on the online dating topic. Just wanted to add

that what someone's profile doesn't say is as important as what it does say. It

can screen out or attract the right person from the beginning.

>

> When I met my husband on Match many years ago, it was his profile that

attracted me. He had a couple of nice pictures and a detailed profile, but

there was absolutely no mention of sports or outdoor

> activities in his profile. A homebody who also cared about his health...it

was a needle in a haystack. It took several years to find him, but he was

exactly what I had been searching for.

>

> In other words...communicating your lifestyle in detail can help to screen out

the wrong matches from the start.

>

> As far as communicating weaknesses, we didn't share our weaknesses with each

other until the second date. If you really like someone, doing it in person may

be better. But, it is a numbers game of sorts, so if it saves your energy and

helps to do it over the phone, that could work too.

>

> The whole process can get discouraging. Many times I vowed to give up and

took a needed break from it, but ultimately perseverance paid off. Hang in

there.

>

>

>

>

[Guest guest]

Lynna,

Sounds like you have got a handle on it, just as I am learning to use that

handle myself.

thanks for sharing,

On Dec 11, 2010, at 10:38 AM, Lynna wrote:

> Hi All,

>

> This is a subject of enormous interest to me. In my younger years, I was very

attractive and was able to hide the truth of my CMT from would-be suiters. I had

no shortage of dates/romances etc. I was married for 20 years, and our marriage

ended because of CMT. LET ME EXPLAIN, lest you jump to conclusions!!!

>

> It wasn't because he rejected me, but because my progressing CMT forced me to

grow into a stronger woman of more depth. We grew apart and I didn't want to be

married to somebody who I felt needed to control me... I felt smothered in the

relationship.

>

> Since that time, I've been getting on with my life. Divorcing, raising

adolescents, buying a house, going back to work... who had time to think about

dating. shew!

>

> I'm now at a more settled place in my life and am ready to spend time in the

company of good men. Here is the thing though: I am a catch. I consider my

visible CMT to be a great asset for filtering out the duds. I don't see it as

being rejected... I see it as them not being smart enough/evolved enough/

spiritual enough to recognize value. I will only date guys who are stellar human

beings who treat me with great, great respect and tenderness. (If that means

sitting home on a Saturday night enjoying the pleasure of my own company or that

of friends, that's very acceptable as I wait.)

>

> I'm excited about being vulnerable and completely transparent about my

disability and trust that any relationship that develops will be grounded very

solidily.

>

> In the meantime, I work on being the best me I can be. I am losing weight (and

look pretty sexy if I might say so), I enjoy learning, I have a ton of

interests, and I am my own best friend. I kinda think I have more potential now

than every at any time in my life to be a good partner in a relationship.

>

> Exciting times ahead,

> Lynna

>

[Guest guest]

Has anyone thought of going to disabled single sites that's what I did.....sweet

success!!

Geri

[Guest guest]

Geri,

Can you tell me some sites like that please? I didn't know there were any.

Thanks.

Wanda

[Guest guest]

Geri,

What site is that?

On Dec 11, 2010, at 2:51 PM, Geri Logan wrote:

> Has anyone thought of going to disabled single sites that's what I

did.....sweet success!!

>

> Geri

[Guest guest]

Disabled singles on ....

Geri

Geri,

What site is that?

On Dec 11, 2010, at 2:51 PM, Geri Logan wrote:

> Has anyone thought of going to disabled single sites that's what I

did.....sweet success!!

>

> Geri

[Guest guest]

i found a chat room in talk city for people with a disability, i use it somedays

when i am bored

>

>

>

>

>