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Extraordinary

I am sorry to hear what your friend said about you and your son. That sort of thinking must be part of the human psyche. When I was a child a psychiatrist diagnosed me as having a psychosomatic illness--meaning I moved the way I do due to repressed emotions. I then saw a psychologist for two years to help me deal with my emotions. Between the two of them, they dreamed up the idea that my three sisters who also have MC were copying me. The reasoning was that they just wanted the attention I was supposedly getting.

The funny thing was that my parents hardly talked about it, and when I brought it up or they saw me walk with stiff legs--because believe me I tried 24/7 to hide it from them--they were either threatening or insulting or both. As a result I tried to hide it from everyone and was very afraid of people finding out about it.

I have come to the conclusion that people, all people including myself, are very ignorant when it comes to things we know little about. Unfortunately for us MC is quite rare and almost everytime we tell someone about it, it is the first time they are even hearing about it.

All that I can say about this is that it has often felt like a curse, but you know what they say about every curse--it also being a blessing. I am a filmmaker, but first and foremost I consider myself a storyteller. Because of MC, the stories I tell have a unique and fresh perspective compared to most of what is being told these days.

A very inciteful person once responded with this statement when I told him I just wanted to "normal." He said, "you will never be normal, but another way to look at it is that you will never be ordinary--in fact what you are is extraordinary."

Re: Extraordinary

your friend was probably speaking about your strength of character,because the one thing mc does i think; is build character,many things dont come easy to us,so maybe we can cope with what life throws at us with the same,:roll your sleeves up and try again attitude: when i was taken to the clinic at about 3years old my mum was told i fell over and walked the way i did for attention,mum wasnt convinced however as i did it when i thought no one was looking. and i didnt have to hide it from family,so i cant imagine what that was like,maybe guilt was what motivated your parents behavour. My son is 24 now,and still lives at home(when are they supposed to leave) and i often joke that i am going to lay foam up the stairs to make the landings softer for us,he rarely mentions the mc even on days that i can see he's struggling,but then again it took years for him to admit that he had a problem which was so obvious to every one else,maybe denial is the answer for us all.

Type of Myotonia: MSN Messenger,3

Re: Extraordinary

Jim, if you have film making experience maybe you could eventually put together a short documentary. Even if you only put it on YouTube it would help educate, and if you could do it as a part of a project with a medical or biochemistry student for instance that would be even better. There are loads of fainting goat videos!

Jan

Re: Re: Extraordinary

Jan I think that is an excellent idea. Even though I am more into fictional films, I can definitely see MC being the subject of a good documentary. I think personally, I would have to focus on how MC contributes to the human story. It is definitely a fascinating condition--despite its challenges, I have always been fascinated by it.

I mean what other "disease" sort of dissappears with use the way MC does? What other condition builds muscles, giving the appearrance of strength and physical ability that is not really there. It also builds "strength of character" as Barbara says, and I imagine if I interviewed people with MC everyone would be surprised at how engaged people with MC are.

MC is a rare condition, which makes it even more intriguing from a story telling standpoint. Imagine going around the world and filming the lives of people with MC. There are just a few of us, but what rich, complex lives we lead.

The focus or theme of the documentary would have to be the fainting goat. What other condition has its own symbol like MC does. There is something almost mythic about this. I find it to be an interesting that on the one hand people with MC seem to go out of their way to control or hide their own physicality--this is what I refer to as the "Chamelion" complex--and then on the other hand there is this cute, funny little animal that also has MC but doesn't know any better, so it just continually walks and falls over due to the stiffness.

The reason is simple. We are human. This is how people tend to deal with adversity. The first step is always to run from it. We try to hide who we are; we try to control who we are, but no matter how hard we try eventually the stiffness will show itself--often in the most embarrassing of situations. This is not anything to be ashamed of; its just part of being human. Its just wanting to fit in. However, the more we accept who we are and the more willing we are to allow people to see our true physicality the stronger we become. The more real we become. The more we become like the fainting goat.

Re: Re: Re: Extraordinary

Jim i think it would be an excellent idea too,you making a film to educate the general public whilst lois educates the medical profession, i think also we should all sponser a goat, it would be funny to think there is a myotonic goat running round in america named after me, well, falling in america, hey thats what you could call your documentary,

Type of Myotonia: MSN Messenger,3

Re: Re: Re: Re: Extraordinary

After I found out I had MC and I saw those goats I wanted to get one as a pet. We could run around and fall over together.
I think a documentary film would be a great idea.

Documentary

Now that is the kind of enthusiasm that leads to great filmmaking. I love the idea of naming the goat after Barbara. Using the name you have on your email would be even better--Bubs the Fainting Goat Takes America--with your permission of course.

Re: Documentary

i would be honoured, when are you going to start filming Jim? This really could be the start of something,Jan is a genius.my goat by the way has to be mega cute,and dives on it's ear with panache

Type of Myotonia: MSN Messenger,3

Re: Re: Documentary

The odd thing about the fainting goats is that they just hop up and act as if nothing has happened. The older ones tend to lean against fences, walls, propane tanks, etc all day to keep from falling if they get startled, so even they learn to cover up :-)

I've always thought it would be very unfortunate to live near cannibals if you have MC...the goats are prized for their hypertrophied muscles which make great meat. I'm glad Hannibal never knew about us!

Jan

Re: Re: Re: Documentary

How about one entitled "FALLING DOWN" oops I guess Michael Douglas already used that one !

Re: Wikipedia post

I LOVE this idea!! I actually think that a film that features interviews with as many people with MC as possible, along with fainting goats, could be a very entertaining way to educate physicians, therapists, nurses, psychologists and others who deal, often poorly or clumsily, with our condition. An entertaining, light-hearted film, with goats and people falling over (sort of reminds me of the Beatles' "A Hard Day's Night"!), but also vignettes of people describing the pain, frustration, embarrassment, malignant hyperthermia, and other manifestations which most clinicians seem not to know about, could be a spectacular teaching tool, and you might get a grant to make it - or an award for making it! What a neat thought! lois

How to begin the documentary

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.

Re: How to begin the documentary

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

Re: Re: How to begin the documentary

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.

Re: Re: Re: How to begin the documentary

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

Re: Wikipedia post

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

Read New Documentary Thread

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.