Lois wrote:

(To have this group, once I received a late-in-life diagnosis, was like finding family I never knew I had, who actually understood and empathized, and who instinctively cared about me without even knowing me! How cool is that!?! Doesn't get much cooler! : )

I really respond to what you wrote here Lois. When I first found the site, I didn't feel the connection with everyone on here. I thought, "Okay these people have MC, so we have something in common, but they will probably think I'm weird." But then when people started to say that they had the same experiences as me (ie feeling weird) and that they reacted to things the same way I did (ie, acting weird to distract people from knowing that they had MC) the defensive wall I've put up all of my life started to come down. I realized how much shame I have had about acting strange to cover up the MC and how angry I have been at the world, because I felt like others made me do it.

I don't know if I can put this into words, but things have always felt a little chaotic in my life. Most of the time, I have felt like I live on this little island by myself and there is noone else in the world who goes through what I go through. I would look at other people and think, they are all so typical--they all act like a bunch of lemmings. I used to tell myself that I am so different than everyone else--so unique. And I took a lot of pride in this fact.

But when I found out that many people with this disability have reacted in the same way that I have, the universe now seems to have a little bit more order to it. I feel a little bit more grounded. I am beginning to understand those without MC a little more. Maybe they act the same way because life and society act on them with the same forces that they do a lot of other people? Maybe they are not all just a bunch of mindless lemmings?

Its hard for me to let go of that, especially in our society that is so image conscious. But I think everyone who has shared their stories has helped me let go of my grudge a little bit. Thank you.

I see you melting. I, too, had so many barriers and defenses and excuses. I don't think I realized how many, or how complex, because I was just so used to being that way! This is a very non-threatening and open place, kind and forgiving and non-judgmental, to kind of sort out which parts of one are truly just elitist snobs, and which parts are attitudes developed to keep the nosy and critical away. OK - so I'm a stinker. But you know what I mean! ;-p Lois

Thanks, Lois and Jim, for being so transparent. I have had the same feelings--Wow! There are other people like me! I have always acted "weird" or "goofy" and definitely "over-the-top" with self-debasing humor! After reading Jim's reply, I can see that I have used many defenses over the years. At times, I have told people about my MC, especially if I was having noticeable problems with stiffness, But they don't have any understanding of the disease. Many people still think I have fibromyalgia. Sometimes I want to get a t-shirt the says "MYOTONIA CONGENITA" across the top with a brief definition, then in bold letters at the bottom have "I AM NOT LAZY OR OLD, I JUST WALK LIKE A WOODED SOLDIER SOMETIMES! Then maybe included this web address for more information! HA! Actually, business cards to hand out would be better! I do have to share a "funny" story that happened yesterday! As I was leaving church, I pushed the door open with my left arm to go outside, and my arm stayed in the "stuck straight out" position. I turned to walk to the right, not realizing my arm was still sticking out, and hit a lady as she was walking in the door! She said, "excuse me," thinking she had run into me! So . . .I didn't have to make any excuses! I just had a good "internal laugh" and thanked God for getting me out of that one!
Have a great day! Thanks for being a blessing and "healing balm" in my life!
Jill

Hey. Where can i buy one of those t-shirts. I would be the first in line.

Hi everyone, Jill your story made me laugh,i too have accidently smacked people in the face with an arm which had a mind of it's own,or at least it looked that way to it's horrified owner...maybe we should all have public liability insurance or maybe that tee-shirt with a disclaimer on...my internet has been down at home looks like i have missed loads,. I am slowley learning to speak German,getting back to my stiff little roots.maybe you can help Lois,do you speak German well? aufedersehen . Haben Sie alles einen gut tag. maybe i should check the book.

OK - Now we have Myotonia Congenita: The Movie, "The Myotonia Congenita Chicken Soup for the Muscles Humor Book", the All Comics Falling comedy show, and now, the T-shirt... what are we missing - and who will volunteer? This could be the next great fad!! Oh wait - I KNOW!!! Willie Nelson, Michael Jackson and all, doing a MC Aid concert!! lois

Hi all - I think the T-shirt should say "One of Frankenstein's cousins" on the front, and "The Myotonia Gang" on the back - or something like that! (or do we already have a design?)

Barb - Ich spreche Deutsches, wie ich Ballett tanze! Sehr schlecht. Aber ist "auf wieder sehen". Guttes Gluck in Ihren Studien! Ich bewundere Sie. lois