Maybe what everyone could do is write a little background on themselves--where they live, who they know with MC, what they do for work/fun, what is their passion (ie, mine is filmmaking), how they think MC has positively affected their life (everyone will expect a film about "disabled" people to be about how terrible and difficult our lives are. A more interesting concept would be "here's these bunch of people from all over the world who walk stiff and have some challenges, but find this enourmous sense of strength from this muscle condition that forces them to try really hard to do things that most people take for granted. And the moment they start to take themselves seriously, all they have to do is think about these goats with the same condition who don't take themselves seriously at all--in fact they just walk into they can't and then fall over.")

And we could also give a short story on one of our more unique social interactions with others--this can be anything.

From this point, we could create a set of questions that would be asked in the documentary.

The documentary could start out with a broad view--speaking about DNA and genetic mutations. When you think about what is a genetic mutation, one could say that we have genetic mutations--I believe we are genetically different. When I am really feeling politically correct and want to get on my soap box (which isn't too often anymore) I say I have a genetic difference. But for the purpose of drama, we could start the documentary talking about genetic mutations. This is the level that the general public will be comfortable hearing about MC--the scientific level.

At some point the film can make the point that Michael Jordan has a genetic mutation. His mutation makes him more athletic than most, however, he is a mutation outside of the normal. He is also extraordinary in this way. There are football players that are 7 ft tall, 350 lbs, can lift 500 lbs and run a 4.5 in the 40 yard dash. They are also genetic mutations. People worship them for their ability, but I guarantee you they suffer somewhat because of this. They aren't normal. They can't just go into public without being stared at. People ask them stupid questions and make ignorant assumptions of them. However, they are extraordinary.

We too are extraordinary, and the question of the documentary is "how are we extraordinary?" Is it our muscular builds? Is it the rarity of MC? Or is it the fact that the rarest commodity in the world is motivation, and I argue that those who have little struggle have little to motivate them? Another way to say "motivation is to say "something to live for."
I believe if MC does not crush you it will make you stronger, and if you can walk in front of a group of people stiff muscled--and we all know what that looks like--and look them all in the eye and be okay with who you are, then you have achieved something extraordinary. Imagine how that kind of personal strength can be used in other areas of your life.

That is what those little, weak goats do. They are always being themselves and being okay with it. They don't know it, but I imagine inside they are some of the most extraordinary creatures on earth.

Anyway, just some ideas of where we could start this thing.

Can I ask if you all are very serious about this documentary? I actually would truly love to be a part of something like that. I have felt so much shame and loneliness from this disease that maybe it would be very freeing to talk to others about it and then of course there is the benefit of getting more knowledge out there about Myotonia Congenita. I was just curious. This has been a particularly hard part of my life lately and would love to try and bring myself out of this bad stage I am in somehow. It is very isolating at times to be sick all the time isnt it?
Jody

I don't know how far it can be taken right away. I am currently editing a film and have a full time job besides that, but I am willing to get the ball rolling.

There are two ways you can do a documentary. The first is to go out and shoot a bunch of stuff and then try to find a story within that information-or you can start out with an idea and craft the documentary to fit the idea.

If you are interested in being a part of this film, then respond to the ideas I put in the previous post.

I think the idea of centering the film around the fainting goats would create a wonderful lighthearted film. It is funny and endearing. People don't like to be told information in a film, but if you can wrap information in a fun heartfelt bundle then they will gobble the information up.

I read what you wrote previously and I will write my story and what you asked. I think the idea with the fainting goats (which I have seen in documentaries) is very light hearted and also very very interesting. I hope this gets made. If there is anything I can do to help please say so. I dont know much about documentaries but that doesnt mean I cant learn. I think it is a great idea either way,
Thanks
Jody

Hi - Jim (and everybody) Do you want us to write our "stories" and e-mail them to you, or shall we just use this thread - it could get pretty long, but might be fun - and supportive - to hear different people's stories and anecdotes. lois

I will start a new Documentary thead where people can post their stories if they so wish.

I also like the idea of everyone posting their stories and anecdotes on this forum. I agree it might be fun. Of course if anyone felt uncomfortable posting on here they could email me or Jan--since noone really knows me and Jan is a proven trustworthy source.

My suggestion is to think of your life with MC as a movie. In storytelling you want to be as clear and concise as you can--and always leave a little out to keep people guessing. Alfred Hitchcock once said
"what is drama, after all, but life with the dull bits cut out." So figure out what the overall theme of your life is, for example:

Did you live in denial until something happened
that made it impossible for you to deny who you
were anymore. The tagline would read--An actor
living in shame with a muscle disease he has always
disguised must face the world after his ex-wife
reveals his secret to the press.

Or was it the opposite that you grew up in an
accepting but sheltered family who home schooled
you, and you had to face a different reality when
you went to highschool. A disabled girl who was
homeschooled must face the reality of highschool
where everyone is "not so nice."

I don't mean to offend anyone by using the words disability and disease but these words get to the point and make the idea clear to the general audience reader.