Please watch this video and give it the 'thumbs up'!

INSTRUMENTS

Please watch this video and give it the 'thumbs up'!
post by Tim Phillips

The project is going so well, we've decided to try and raise it up a notch - we want more people to get involved... but they can't if they don't know it exists.

So we've decided to aim for some youtube stardom to gather momentum.
Please, please, please watch this video and give it a 'thumbs up', make it you 'favorite', tell your friends, whatever it takes to let the world know it's cool and we'll try and get it featured by the powers that be! Thanks.

If you have a quick eye, you can see my latest modifications on the bubble organ design. The cost is now minimal and I reckon I can make 5 in an hour - so I'm ready for mass production!





CHARCOT MARIE TOOTH

X-Ray Vision
post by John Berger

I got it touch with this post's CMT writer as a friend of a friend, his name is Jonah Berger. I sent him an email, explained the project and he kindly replied saying he was interested, but he also asked me to call and talk it through. I'm telling you this because when we got hold of each other, a interesting and open conversation followed, I made an inspiring friend. It was a strong reminder that although the internet is a powerful tool for connecting, it's not so hot on conversation.

One of the things I found out is that Jonah has already written a book that compiles his thoughts on living with CMT: He Walks Like A Cowboy, this is how he describes it:

"In any one lifetime, part of the work of living is to go from figuring out what you got dealt, to accepting it. Learning to wield your unique situation to best get your point across. I have found through my life lived with a physical challenge that there are two versions of how a disability is dealt with. One is the version you show to others. The other is the version you are really and truly feeling inside.

In my life, these two versions started out light-years apart. And over the span of 38 years, and the influence of many magic people, they have been growing closer all of the time. There is something incredibly free about showing the world what you have going on inside. It helps to keep the struggle of your situation confined to the actual challenge, and not intensified by shame. The pages of this book are a true marriage between my two versions. Charting the affect of a disability on the physical, emotional, and spiritual. Containing an honest view of how struggles can be beautiful, and strength can be found in the weakest of places."

I have a copy on order, but in the meantime Jonah has offered to post one of his chapters here to be part of this project.

X-Ray Vision

There is a certain mentality I have seen in those who deal with any kind of struggle in life, a tool that is used to handle and deal with this struggle. It is the attempt and eventual success of trying to see the good in the struggle. One attempts to identify the pieces or results of the struggle that are good, that are beneficial. Does it make the struggle disappear? No. Yet I have found that this mentality helps to put the struggle into a better perspective, or at least a more palatable one.

In regards to this philosophy, several positive results stand out. As a result of my disability, I am an inherently sensitive man. I had very little choice but to be concerned for the struggles of others because I have relied so much on their concern for mine. My disability has given me the desire to see others’ struggles and to help them to minimize them. I have learned to take my familiarity with pain and use it to empathize with others. My disability has taught me humility, at least in the physical sense. I have learned to appreciate strength through a perspective impossible to possess without a disability.

I must say that one of my favorite silver linings is what I call X-ray vision. Throughout my life with a disability, I have noticed a wide variety of reactions towards me. And the common denominator that ties these various reactions together is that my disability allows me to see people’s reactions. It allows me to see people’s hearts. It allows me to see people’s strengths and weakness in dealing with me. It allows me X-ray vision into one part of who they are. I have become better over the years at using this X-ray, as well. At first, it was like a new power I did not yet know how to use. For example, I used to judge a quiet response to my disclosure as a lack of concern or feeling about it. Yet, those quiet people are often the ones who later lend me assistance on a hike or similar challenge without using their words. It taught me that some people would rather show their support through action.

Enter Brandt Lewis, my shining example of the X-ray at work. In my later summers at Camp Ramblewood, when I was about seventeen or eighteen, I met Brandt Lewis. Brandt was also a counselor at Ramblewood. He was from Arizona and a truly interesting guy. Brandt was also a very good looking guy. And he was fully aware of this. As a result of being a good looking guy, Brandt was used to having his way with women. He was a player from start to finish. He was on his game all of the time, and after a few summers at Ramblewood, Brandt developed a reputation that was less than favorable. He was kind of a jerk. He very rarely spoke with sincerity, and he very rarely treated women (or men, for that matter) with a great deal of respect. Brandt was in it for Brandt, or so it would seem.

For whatever combination of reasons, I always got along with him. I liked Brandt. He made me laugh and I did the same in return, and I wasn’t a woman, so he had very little reason to piss me off. By the last summer that Brandt and I were at camp together, he and I had talked a small amount about my disability. Nothing of major substance, but it is fair to say that he was aware of my condition.

Each night of camp, after the kids had gone to sleep, a quarter of the staff would stay back to look after them. That left three quarters of the staff free to go out to the local town bar and get drunk enough to forget we were childcare workers. When the kids were asleep, those who were bar-bound would gather and walk up to the parking lot together. It was dark at this point and to get to the parking lot, we had to walk up a long hill and cross a small field. The small field was no more than about 200 yards across, but it was made of uneven ground, filled with craters and dips. And was completely overgrown with tall grass, allowing no vision as to where the dips and holes were located. It was a disabled person’s minefield. For the most part, I was still in the phase of my journey where I kept my fear and discomfort to myself. I didn’t want to be seen as different. I would dread that field as it approached, and when the group would start walking across it, I would simply slow down a bit and take it at the most normal pace that my fear and feet could muster.

Except for the nights when Brandt and I were both part of the bar-bound crew. On those nights, it looked something like this: the group of about 25 staff would be walking up the hill and laughing, and when we got to the edge of the field, the group would keep walking at their pace, barely noticing that they had entered the pothole field of doom. Except that Brandt, each night that he was with the group, would always slow down a bit at the edge of the field, and subtly position himself about one foot ahead of me. He would never look back or speak a word, but he just walked ahead of me with his hand held out behind him. This guy, this player who had little respect for women, a guy most people had written off as a total asshole, was the one member of that whole group who never missed a chance to be my guide through that field. Most nights, we would walk across that field just fine. Me, uneasy, and Brandt with his hand behind him. But when I would stumble or my foot would land in one of those invisible holes, I would grab his hand to keep me from falling, and he would be right there for me. I don’t think anyone else in the group ever noticed that this went on, but I did. I have never forgotten it. It is a glowing example of X-ray vision.

As a result of my disability, I was able to see a side of Brandt, a side of his truest heart that most people never would have seen and probably wouldn’t have thought existed. I was fortunate to have that vision of him. He is a good guy who made a lifelong impression on me. There have been countless others who have helped me in this way over the years, countless others who have lended me a hand or an ear without me ever having to ask for it. I use my X-ray vision in all of those moments to see into the true heart of people. And more times than not, I see only good things.

____________________________
Jonah's a 38 year old native of Rockville, Maryland who has spent the last 10 years enjoying life in Denver, Colorado. He founded and runs a business called The Rhythm Within; a therapeutic mentoring service for children and young adults with special needs. He can be contacted at: bluewoodfire@hotmail.com