There were several things in Lois story that I really responded to, and I am wondering if anyone else has had similar experiences.

Lois wrote that other people "were satisfied with my constant supply of excuses and explanations about my frequent odd behaviors."
Growing up I too would act weird, and make excuses for MC that would get laughter or odd looks. I often felt like a court jester, who would say wild things just to throw people off of the scent. It was almost like "if I act goofy and weird enough, then they won't question me as much when I take five minutes to get out the back seat of the car." The pathetic thing is that many people liked my behavior--I was entertainment for them.

The other thing I responded to was the idea of being given a very own "real life" versus a "shadow life" that was being lived previously. I know that even though I found out I had MC at 14, it wasn't until eight years later when I stopped hiding my MC did I start to leave my shadow life behind.

I guess these thoughts have picqued my interest as possible underlying themes for a documentary. In storytelling, all characters have an underlying metaphor to them, and the best documentaries have a good story to them.

Two metaphors that have come to me about MC are the cameleon and the court jester. The jester is the principal player in court who uses humor to mask the truth; who masks the truth, because he is not allowed to say it directly. This is a weakness, but also a strenght, because he has a certain power that no other members of court have--the right to directly confront the king, albeit through riddle. Perhaps people with MC are more able to see the truth and highly motivated to profess the truth because they have been forced at time to live life like a court jester--the center of the joke, but the only one who really knows what is going on.

The cameleon blends in with his surroundings for survival, but if you really think about it, the cameleon does not consciously control these physical changes--they happen as a response to external stimuli. You could say it is beyond the cameleon's control. Unlike the cameleon, people with MC can consciously control whether they "fake away" their natural movements or not, but it seems from hearing from many people on this site that their is something inherent in this condition that involves hiding the disability. In this way, until people with MC learn coping mechanisms, it often feels like having to fake away our movements is the only choice, and in fact because the fear of being seen is so intense we are forced to change colors like the cameleon.

Jim - Thank you for a very thoughtful and sensitive assessment of my "story". I think both the chameleon and the court jester or supplicant are very appropriate images for me. The fear of having to sit in the back middle seat of a car was terrifying, because I knew that trying to get out was going to raise many eyebrows - and embarrass the heck out of me. I would wiggle and squirm beforehand, like I was SO excited to be going wherever it was we were going, and getting out, I would act goofy and nutty, like I was feeling just oh, so silly. It was pretty demeaning and not really my nature, but it became habit out of necessity! But that really did help to sharpen my already rather sharp and ironic sense of humor. And the chameleon part - oh yes indeed, we do usually feel we have to hide our problem - but I feel that is because it isn't a known or understood condition like MS, MD or other pretty well publicized and understood conditions; it isn't crippling, per se, or progressive, so people get "tired" or "bored" with it - they don't see it as really disabling or handicapping, so the fact that this really impacts us our whole lives, and can actually put us in true danger, doesn't really register with most people. And some people feel that we "use" it to rationalize a lot of other things, when, in reality, those "excuses" are actually just our mechanism for better understanding the many ways this silly condition impacts our lives - and how better to cope with that! We cope in so many ways because we have to - there are ADA laws for many more obvious handicaps, but ours are too peculiar to easily explain. Well, everyone - rock on! lois

Lois, when you mentioned the potential dangers for us I remembered an incident that occurred about ten years ago.

My daughter who doesn't have MC was hiking with me in Rocky Mountain National Park. We had come to a beautiful overlook and were close to the edge peering down at the waterfall below. The noise from the water was so loud we didn't hear a couple of guys coming up on the trail.

One of them thought he'd try to be cute and shoved my daughter forward to give her a scare. Fortunately she was able to catch herself, but if it had been me, I would have tumbled right off the edge of the cliff. I was furious and he couldn't understand why I couldn't take a joke.

We always have to be on guard for situations that could put us in danger because of adrenaline kicking in the myotonia big time and causing us to lose control of our movements. I wonder how many of our "family" around the world have had serious injuries because of this.

Jan

Hi everyone ,i told of the time i was put in danger,and then consequently endangered a friend ,in response to Jim's comments about eye contact.now i have to tell you of the time i was saved from a more serious injury,by my mc. I was rideing my bike,in a hurry as usual, i had taken the lamp off my bike but had left the bracket for it on,during the winter, well i must have hit a bump on the pavement(lucky i wasnt in the road) when the bracket dropped and swung into the front wheel,stopping it dead..because of the grip on the handlebars the first part of my body to touch terrafirma was my shoulder blade,my head wasnt touched,therefore i must have done an allmost complete somersault still holding on to the handlebars...it must have looked very impressive..i had an xray at the hospital but they said nothing was brocken,buti couldnt sleep on my right side for 6 months,but it was the one time i was very gratfull to the mc i'm convinced it went a long way to saving my neck that day,anyone else(except you chaps) would have shot forward and kissed the pavement, sorry sidewalk. Can anyone else think of a time when the mc has been a blessing rather than a curse?

Type of Myotonia: MSN Messenger,3

Oh Jan - how well I can relate to this - I have been in the position of being pushed or prodded or otherwise endangered in potentially disastrous places - People think we can't take a joke, or are poor sports, or that we are so uptight that "teasing" and "playfulness" are beyond our comprehension. When I didn't know what was wrong with me, I just felt guilty, stupid and frustrated. And very defensive. Now, I would be SO verbal about it, and really lay into them, and use all the medical and legal jargon I could to make my point - that is, IF I survived! Swan dives are not my forte! LOL - lois

Reading the 3 stories ----brings tear's to my eyes...and one day real soon here I am going to post my story too.
Beth