I’ve enjoyed reading the posts in this thread, mainly because I’ve identified with so much of what has been written.

I exercise daily, nothing heavy, but I notice that it does have a beneficial effect on how I feel and how the MC behaves. However, I also recognise Jim’s comment about the mental challenge. I find it difficult to continue my exercise regime when my daily routine changes even though I know full well how it will impact on me. It’s very strange but often getting myself up and exercised is often more of a challenge than the exercise itself.

As to other people’s expectations, I’ve learnt to care only about the opinions of the people I care about. In this I’m in a different situation than most MC sufferers, I have Spina Bifida too and this has deformed my feet so that I require orthotic boots to walk. I suppose that this advertises to others that there’s something with me so their expectations are reduced accordingly. I still played sports at school when I was younger though and still enjoy watching them.

Jan made a comment about being angry with God and I certainly used to feel that way. I realise that not everyone is comfortable discussing spiritual matters but I’ve found a degree of contentment with regards to having MC by becoming a Pantheist. I don’t see my situation as the result of one of God’s mysterious decisions, I see it as a part of the process of life that leads to other people being great athletes, singers, intellectuals, etc. My muscles don’t work very well due to a mutation at a genetic level, but if that mutation had gone a different way I might have been physically exceptional or just normal. Being born is a gamble anyway and to be honest I’m glad I was born with MC rather than the Cystic Fibrosis that killed my friend when he was in his twenties.

I’m not angry at God anymore, or myself, or my parents for having the amazing luck to both be carriers and meet in a population of over 250,000 people. I get angry occasionally when I have one of those moments were my body doesn’t function properly and I’m left embarrassed, but I know not to hold onto the anger now.

There’s a psychology to disability that should be better explored by the profession.

Type of Myotonia: Becker's

Country: England

Pete,

I completely agree with your last statement. There should be more study of the psychology of disability. I think it would not only help those with disabilities, but would also help everyone else as well. And Lois thanks for your comment that my posts make you smile. I've never met you before, but I imagine that you are a rather positive and fun person to be around.

I've been reading Joseph Campbell's book, The Hero with a Thousand Faces, which is about the common steps hero's go through in stories from around the world. If you didn't know this, George Lucas followed Campbell's outline of the steps of the hero in developing Star Wars.

What Campbell points out is that for the hero to truly transcend and fulfill their quest, he/she must do two things: First the hero must die to the world from which she came. Her death is often a symbolic death in stories, but it always involves leaving the psychological mindset she has developed towards the world thus far. What is that psychological mindset? It is mindset composed of lies, all the lies she has told herself to help cope with the bitter and unpleasant realities of life.

Sometimes these lies tell her that life is terrible, and so the negative events in her past drag down everything else; and sometimes the lies are lies of denial and she is unable to recognize her faults.

For the hero to ultimately reach her goal she must be able to see the world as it truly is-neither all darkness or all light, but both. As the hero begins to see the truth that the world is both dark and light at the same time, the hero begins to live in the world of reality and leave the world of fantasy, because the only way to move forward in life is to deal with reality.

Our world in it's true nature is dualistic, a blend of opposing forces that balance each other out. Once the hero is able to accept this and stay in the center, without being pulled in either direction, then and only then may she fulfill her quest.

I guess my point is that having a disability is much like being a hero. I believe in my heart of hearts that there are untapped positive forces associated with disabilities, which the world has not yet learned to recognize. I hope one day the world will learn to see that positive side that balances out the pain, anger and frustration that is often associated with disabilities. I think the profession studying the psychology of disability would be a good first step. I think it would lend validity to those positive aspects of disability.

Type of Myotonia: Thomsen's

Country: US

Wow, what an excellent post Jim!

I agree with what you said. In many respects my move from Christianity to Pantheism was a kind of death and figurative re-birth as you explain it. I never found an answer in Christianity as to why I was born this way and it left me somewhat bitter.

Moving onto a form of belief that was inclusive of both me and my disability has helped me to come to terms with it as a reality of my life and not as some unexplained judgement. I must stress, that this is purely a personal opinion and not intended as a criticism of any practicing Christian; to each their own!

When I was at college I knew someone going onto study Psychology and we talked about the impact of being disabled; I think that she went on to write about it as part of her dissertation. I’ve always found it curious that you can have counselling for being in a car accident but no one thinks that being disabled can lead to a person suffering traumatic experiences; such as when I fell off a moving bus because the driver expected me to be able to jump!

As to the positives of being disabled, well the cynic in me wants to treat that with scorn, but the realist recognises that there is some truth in it. For instance, I’ve become a very observant person because I’m always on the look out for trip hazards. As a result I see things that most people seem to miss, something that my wife frequently comments on. I’m also quite inventive as I’ve had to find new ways around routine problems simply because I can’t always rely on my body. Necessity, they say, is the mother of invention and no one needs invention like a disabled person trying to live a ‘normal’ life!

Type of Myotonia: Becker's

Country: England

Thanks Pete. Yes, Campbell calls the acceptance of reality the acceptance of responsibility, and it is a necessary step in moving from the consciousness of childhood into the consciousness of adulthood. Every instance in our lives where we are unable to let go of what he calls "infantile" fantasies, we are unable to move forward to the next stage of our lives.

Since accepting the grim truth of reality is often not easy, with its many painful experiences, Campbell says people need to incorporate into their lives the positive buffer to all pain, which is love. This "love" is different than the childlike love a child has for their parent, for it involves loving someone or something that is outside of oneself. Hence when people say that "love makes all things possible," what they are really saying is that any obstacle, difficulty or strife can be endured if a person has love in their life. I never would have believed this until I met my wife, because I am able to handle things I never thought I could endure, simply through my love of her.

So for the hero, she is able to face the scariest of all challenges, because she has love to get her through it--this is why there is often a love interest in adventure stories.

This is also why people with disabilities have the potential for greatness. Not only does facing difficult moments make a person stronger, much like the extreme heat of a fire pit can forge ordinary metals into steel, but also, facing difficult moments requires great love, and the more love a person has in their life the more powerful they become. Great love counters great pain, and then we as people are able to move forward in a balanced, peaceful manner in whatever direction life wants to take us.

It is my own personal belief that without great pain, great love is difficult to obtain. That in a magical sort of way is the gift of disability.

Type of Myotonia: Thomsen's

Country: US

Not sure how to deal with the anger though it does affect me. New to this forum seems very strange to talk about this disease, as a family we seemed not to talk and just get on with it, replied to this message as the 5th is my birthday, just caught my attention.

Have a bloody good drink pal and just remember there's people a lot worse off than us, Ha Ha, seriously though not got any tips, sorry.

Type of Myotonia: not sure

Country: England

That strikes a note with me!

Seems to sum up most of the attitudes I've encountered from people who are usually ignorant of what having MC can actually entail. That includes a surprising number of the medical profession too!

Type of Myotonia: Becker's

Country: England

I would like to respond to both of the prior posts, since I see the point in both and agree and disagree with both.

I grew up in a family that was in the medical profession, as a result I was diagnosed with MC Thomsens when I was three at the UW Madison medical complex. My father, a family physician picked up that something was wrong when I started to walk... or at least tried to. Every Doctor I have been to ever since has taken a keen interest in the MC and done independent research to get the newest information on it.

So, I have been living with the knowledge of what I am and have; since a very young age. My parents were always open about things since they told me from very early on that I was adopted so there were never secrets. If my father thought I was doing something that might cause the MC T to bite back, he would tell me.

I experienced the anger of not being able to compete or even try some things... I recall the rope climbing exercise back in 2nd grade. Absolutely failed at that, and ya it made me angry. Because I was a child and did not understand.

As an adult, I am not sure where that all goes now. I don't get angry about it anymore, seems to be a waste of time for me. I actually joke about it more than anything. Somewhere along the way, I found that cracking a quick joke can be an ice breaker and also put people at ease with a disability I can not explain to them in simple terms. They figure if I am ok with it, they can be too.

My nickname has been Gimpy since before there was Pulp Fiction and something actually called "The Gimp" - there is no correlation as I do not like black leather and will not live in a box because it would take me forever to get out of it.

I think a lot of the anger is based on how you perceive your reality. After about the age of 18 I really started having a 'Meh' attitude about it. The disability, but not the idea of it. Because of that I completed my undergrad in Biology/Genetics. I have always had an interested in what makes me and humanity tic.

So with that I can say this, I am not naive about MC Thomsens, but I have found that the level of happiness one has does directly correspond to one's ability to move. Negative emotions impact MC - depression, anxiety, and fear.

So in the end it is very easy to get frustrated, but at that point sometimes it is best to just take a step back and have that drink or whatever relaxes you and move on.

As my father always told me, "You are only as happy as you want to be." I believe that to be true and always will.

Type of Myotonia: Thomsen

Country: USA