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

Music Drives...

INSTRUMENTS (#6)
Nao Nakazawa is an extraordinary film maker who has agreed to lend his imagination towards creating an instrument! Here is a link (http://vimeo.com/user2696976) to a little of his work - I'm a big fan of {X}.

Stringtotter?
post by Nao Nakazawa

To be honest, I'm not much of a carpenter and I'm a bit scared of power tools. So when I volunteered to make an instrument for Tim's CMT creates: music project, I wanted to make something simple that does not require too much sawing and nailing. This is no longer an option, because as I was brainstorming the instrument got more and more complicated and interesting.

The original idea was to make a ridiculously big string instrument. My concern with this is that although it would be big and ridiculous, it wouldn't be adding anything to the world of experimenting. So I thought about it for a little longer, like a month or so. One day, it came to me: since the instrument would be too big for just one person to play, it requires to be performed by at least two people. I thought, "Why not make this giant string instrument into a teeter totter!"

I researched online to see if it is possible for me to build a teeter totter string instrument. It seems like quite a lot of people have made their own teeter totters and blogged about it. I didn't know there were so many teeter totter enthusiasts out there. This guy, Homeless Dave in Ann Arbor, has an excellent website about his teeter totters and other cool stuff such as a bike powered washing machine: http://homelessdave.com/totterhome.htm.

The more I surfed the net, I realized it is not that hard to build, so it is time to get over my fear of carpentry and do this thing. After getting a little instruction from my housemate Sam on how to use power tools, I was ready. My first prototype is just the instrument part as I didn't want to build a whole teeter totter and then find out the instrument sounded horrible. So here it is:


And this is how it sounds:

This instrument part will be set on top of the teeter totter. One of the players will be at one end strumming, picking and bowing the strings and the other-end player picks the pitch and cords all the while going up and down on the teeter totter. It takes two to tango and to teeter totter. Playing this instrument is like having musical conversations and it requires you to pay attention to what your partner is doing in order to play good music. If you are a geeky couple, this could be the most romantic musical teeter totter experience you'll ever have.

Anyway, here are some parts that need improvements.

The box or the resonant chamber needs to be better. It has too much space between the walls. The top board is too thick - if I replace it with thinner one, I think it will sound better. I also feel like I could build something that's more aesthetically pleasing.

Here's the bridge. It needs to be higher so that when bowed, the bow doesn't hit the corner of the box. You can see the pickup microphone is between the bridge and the top board which works well, but picks up a lot of clunking sounds from the body of the instrument. I'm guessing that if instead I placed the mic on or in the bridge it would sound the strings more clearly. Maybe I should pick up a bridge for cello or double bass, but I'm afraid that will be expensive.

The tuning peg needs some better ideas too, I need to experiment more with this. Any suggestions? I also need to try other materials for the string. Right now, it's 40lb tested fishing line. I wanted something like 80lb tested line, but that's also expensive. Other ideas for the string are steel wire and tennis racket string. If you have any ideas for the string, please comment to let me know.

Lastly, as we were playing this instrument we came across a plastic ball with a bunch of holes and when we placed it on the string, it produced awesome sounds. There are so many ways to make sound out of this instrument and I certainly need to play more to find out other fun ways.



Oh, there's one more thing which is probably the most important issue. This little puppy needs an awesome name. Please let me know if you got one.
Thanks for reading!



CHARCOT MARIE TOOTH
Through this project I have recently come into contact with a great catalyst for CMT awareness, Gretchen Glick. I'll let her introduce herself through her post but can assure you she is someone who makes things happen. She has very kindly agreed for me to post two pieces of writing about her. The first was written by Susan Wheeler and describes a brief history of Gretchen's life with CMT. The second is by Gretchen herself and is an example of her current strength of mind. This is a link to a great online CMT resource that she both founded and runs: www.cmtushope.info (Tim)

Gretchen & CMTUS
post by Susan Wheeler with quotations by Gretchen Glick

CMT is the most commonly inherited form of peripheral neuropathy. Often referred to as a "family disease," CMT provides an element of emotional comfort within families that share affected genes. An unspoken connection exists, even if family members with CMT have died or are merely distant relatives. Since it's rare to meet strangers with CMT by chance, family ties may be the first and frequently--the only--hedge against isolation.

There is a small percentage of individuals with CMT where absolutely no genetic link can be found within their biological families; some of these individuals are adopted and are not privy to medical records. Others simply have no medical links. Though the percentages of such cases may be small, feelings of isolation are overwhelming for people in this rare category. Take it from Gretchen Glick someone who knows: "In some cases, individuals develop life-long addictions as a means to escape feelings of isolation or inner turmoil. It can be extremely difficult to sort through the haze of addiction and emotional darkness to re-create a life in which there is hope."

Now 57 (58 next month), Glick, has traveled an unusual path since her diagnosis of CMT at age nine. Clumsier than her friends, she recalls, "My feet always felt like they were burning, especially after hiking at summer camp. I'd be the first kid to eagerly jump into an icy cold stream, or should I say, fall into the stream." At that time, Glick walked outwardly on the left side of her left foot, and her right foot rolled inward, also to the left. This was corrected a year with surgical tendon transplants. Although surgery improved things physically, the real mystery was the origin of her CMT. Within her immediate family there was no genetic link. Neither parent had the disease, nor did her only brother, who was adopted and therefore excluded from the equation. Upon examination of her extended family, once again there were no apparent signs of CMT. The conclusion left Glick feeling like an outcast.

As a young woman she traveled the path of alcoholism until the age of twenty-seven. Now celebrating 31 years of sobriety she reflects, "I drank to ease the pain involved with CMT and my feelings of being alone and uncertain. After all, this was before computers, and finding information about CMT, or other people with the disease was almost impossible." This was something Glick would remember, and as fate would have it, she came full circle. Eventually, she created a Web site that informs and offers positive support for people with CMT.

Glick is outgoing by nature, and likes socializing with friends and having fun. Despite her ongoing inner struggle, she achieved a Master's Degree in Art History and went on to pursue an eclectic range of interests. She has worked as a Museum Curator, Public Relations Director, Nonprofit Fundraiser and in 1998, an independent travel agent specializing in eco-tourism. Glick has traveled all over the world, exploring destinations such as Australia, Central America and Europe, and readily offers firsthand advice to her clients. She lives in California, and enjoys what she calls "a balance of activity and couch time" as general fatigue is a daily battle. With her dog in tow, Glick likes to hike in the hills nearby and spends a fair bit of time in the garden.

To accommodate high arches and hammer toes, Glick wears custom orthotics to help stabilize her balance and ensure that her walking gait is heel-toe. "I'm a big fan of New Balance Shoes, even though I have to change my shoes three times a day." "Despite some muscle atrophy, my legs are pretty strong and I enjoy swimming, biking and snorkeling. I also have hand tremors which, thankfully, are very well controlled since I started first started taking the medication Elavin-Amitripytyline and now Symmetrel."

In 1999, Glick started CMTUS, an e-mail forum for people with CMT to share experiences and offer positive support to one another. Now in its fourth year, the membership is 600 strong, spanning 33 countries. She says proudly, "CMTUS has evolved to stand for Charcot-Marie-Tooth Universal Services, and our upbeat slogan for CMT is we 'Can Manage This!' Our goal is to increase awareness about CMT and offer support." Her organization has created informative Fact Sheets for both the medical profession and the general public. It has also linked with several neurology sites and to offer hundreds of useful links for people with CMT. "Through discussions we all learn a great deal from one another," she says.

Glick's goal for CMTUS is to move forward with upbeat and balanced steps, just as she has done with her CMT. "This is not a forum about being right or wrong," she says, "but instead a comfortable meeting place where like others can share and explore new and different ideas, one day at a time."



Music drives the devil away. (Martin Luther)
post by Gretchen Glick

How many times have we seen a movie and liked the music so much we went out and bought the sound track? It may have been classical music in the background, or country, western, jazz, or even rock music. Perhaps the music was soothing, or fun and spirited. It made us want to sing or dance. It was so good to listen to it made us feel good all over!

Music of many kinds can enrich the spirit, drive away our worries, and soothe tension. It's a gift we all can have as long as we can hear. And many who are hearing-impaired may still benefit from the rhythmic vibrations of music that are felt more than heard, but which can still be soothing.

My own experience with music helps me to meditate and focus on the NOW of the 'moment'. In doing so, I strengthen my emotional and spiritual life that sustain me as I continue living positive with CMT. The best music for this practice I have found is by Australian Richard Goldsworthy". (www.richardgoldsworthy.net)

When we take some time each day to stop and listen to music, we contribute to our physical well-being and our spiritual health. And we appreciate it when those who have the gift of making music share that gift with others. We may even find a music-making gift in ourselves that we can share and enjoy.

Affirmation: Today help me take time from the hectic part of my day and allow music to heal and refresh me.

The Tale of a Comet

INSTRUMENTS (#5)
The newest instrument maker (#5) has skills. She's currently working on a Doctorate of Musical Arts and has a host of experience and imagination behind her. This is a link to a group she's in:http://www.paulhembree.com/ucsd_summer_tour/, this is the beginnings of her instrument...

(Tim)

The Textureharp
post by Meghann Welsh

I'm interested in creating new instruments with old technology as well as using modern technology to manipulate old sounds in new ways.

The Textureharp (working name):

The idea behind this instrument is to use amplification to capture and control the subtle sounds that are elusive to our ears. Amplification possibilities will include both old and new technologies: the resonance chamber, the sounding board, and the electromagnetic pickup.

The structure of this instrument will be a composite of a washtub bass and a frame harp. Instead of standard strings, I will use lengths of rope that have interesting textures or lengths of rope that have been fixed with textural material. So far, the string material includes rough hemp rope, twisted metal wire, spray foam, and sand paper of different grits. At the end of each string, a can acting as a resonance chamber will amplify the sound of the string. The strings can be plucked like a harp or washtub bass, but the idea is to run the fingers along the length of string to produce the sound of each material's texture.

More on brain storming, trial and error, and prototypes to come.

Other possible names: Touch-Tone-O-Phone, RopeRub, ?



CHARCOT MARIE TOOTH
The next post is by Donna Rennie who is doing a great job at running a CMT support group in the East Bay. She is definitely a motivational force behind this project - but I'm very happy she has joined us on the ground by opening up with the following piece, it changes some of my perspectives. (Tim)

The Tale of a Comet
post by Donna Rennie

It happened while I was getting a massage. My massage therapist, a nurse, asked me why I wasn't using a little transport chair. I had no idea what she was talking about. "Do you mean a wheelchair?" I asked with a scrunched up menace. "Yes." she offered. "They're small, lightweight and you can put them in your car. You can have full mobility anytime you want it. Anybody can push you and it will be fun. All you have to do is ask. People use them all the time."

Everything shifted.

At age 59 I was diagnosed with Charcot Marie Tooth Disease. After four years of not being able to walk more than about 10 minutes without starting to jump from pain, I imagined a way out. Could it be true? Would it be possible to go to a museum again?…take long walks with family and friends?….shop for hours with my daughter?…and, most of all, get rid of all the anxiety about how long I would be stuck on my feet!

So, off I went into the local orthopedic store. They pulled down a little chair, called a Nova Comet (no advertising here.) I sat in it, lifted it, folded it, loved it. Bought it.

Now, I have complete confidence in my "feet." I don't use it all the time, but when I need it, the Comet is there for me.

What's the big deal anyway? So what if my feet have wheels? So what if my feet need hands to push? So what if people look at me a little differently? I always smile and wave. They all wave back. I actually think I've helped them out a little bit. Wheelchairs get a bad rap. They are just another mode of transportation….with human energy.

All I had to do was accept what works, shift my thinking a little bit and ask for a push. Voila. My life came back. I have since found out that my friends and family want to help me. They love me. Everyone has always wanted to push me around anyway.

Reaction to My Mom's Thoughts...

INSTRUMENTS (#2)
post by Sam Hernandez

So it's time for the next phase of my instrument for Tim's CMT Creates: Music project (maybe part of the next phase will be to think of a name for the thing). My last post covered the basics of how the sound would be created: electric motors dangling and hitting beer bottles. Since then I went and got some nice big vases from the thrift store, so hopefully now I have a larger range for the instrument, with the vases being the low range and the beer bottles the high end.

Now to tackle the question, "how do you play it?"

The easiest thing to do would be to have motors dangling at a fixed place on each vessel, and then turn each motor on individually using a momentary switch (push button). Maybe I'll mock that up eventually and see how it goes.

What I chose to do this time is a bit more complicated; I built a quick and dirty frame (literally, quick and dirty) and hung each wire from two eye hooks. The motor is on one end of the wire, and there is a counterweight on the opposite end. You raise or lower the counterweight to put the motor where you want it. I spliced the power wiring to the middle of each wire, in between the eye hooks. I suppose it could have gone at the end with the counterweight, but that would have interfered a bit with playing the instrument.



Anyway, the motors are all on all of the time, and you raise and lower them to make contact with the water glasses. If you leave them there, they just keep sounding.

I had a problem last time with the bits of innertube fouling up on the end of the motors. After playing around a bit, it seems like the best sound is from the body of the motor hitting the glass, instead of whatever is on the end of the motor. So this time I am using electrical tape to hold a little screw on the shaft of the motor. The screw makes the motor imbalanced as it spins, which makes it wobble a bit and periodically strike the glass.


A couple motors had these nice wide round things attached to the motor shaft, so I was able to put a screw and nut directly onto that. I like that a lot better since it is a much sturdier connection.


Here it is in action:

CHARCOT MARIE TOOTH
With great pleasure I'd like to introduce Yohan Bouchard, who has written an insightful response to his Mom's last post about dealing with CMT at school. Together they have a world of insight into living with CMT. (Tim)

Reaction to my mom’s thoughts…
post by Yohan Bouchard

In my opinion, my mother has a tendency to paint her own image of my capabilities, and often underestimates what I can actually achieve by myself. However, I do tend to confide my anxieties in her, and she takes what I say to heart. However, these complaints are not always completely realistic, as I am explaining my past experiences to my mother; they seem amplified as I am recollecting them.

For example, I did end up going to Europe and I had a great time. It was a very physically challenging trip due to my CMT symptoms and foot pain, but I did not dwell on the difficulty when I was in Europe with my father and friends. So even though the trip to Europe at first seemed to be beyond my capabilities to my mother, by using coping and pain management techniques that I have learned over the years, I was able to undertake this daunting challenge and succeed. Honestly I try not to worry about trips and other activities that may prove challenging, as this will make it difficult to notice the positive aspects of the journeys I have gone on in my life.

Although I cannot perform the same activities as my friends and family, I try not to focus on what I can’t do, but try to stay in the mindset of doing what I am capable of achieving. Ultimately, I stay focused on the present, so as not to stress about the past or worry about the future.

Back to School Night - A Mother’s Experience

INSTRUMENTS (#3)

You can ring my bells: parts assemblies
post by Maria Mortati

Today I took my bag of known parts to OSH to match them up with the unknowns: length of threaded rod will make the best sound, and fit in my frame, what material is best for the sound, and what type of washer (now that I know roughly what size fender washer to use) is best acoustically.

I spent a lot of time shaking, assembling and trying pieces together. The folks at OSH were nice and advised me on where to find what I needed fast (they told me they spend a lot of time helping kids on their science fair projects).


Then I worked out the parts for the hand crank assembly. Think I have nearly everything together to start putting this baby together. I found some old bronze bells in the backyard yesterday, so I may incorporate those too. We'll see!





CHARCOT MARIE TOOTH

I’m happy to introduce a new participant to the project, Elizabeth Ouellette. It is thanks to her sincere and engaging outreach that I have become involved in raising funds and awareness for the CMTA. However, Elizabeth has a viewpoint that I do not; she is the parent of a child with CMT. I’m very pleased that she agreed to write the following post describing some of her concerns with her son Yohan’s limitations at school and a glimpse into emotions attached. I’m also pleased that Elizabeth’s son Yohan has offered to write his views on the situation as a response that will be in the next post. Tim.

Back to School Night - A Mother’s Experience
post by Elizabeth Ouellette

As a parent of a child with CMT, I try to live in the moment, taking on challenges as they present themselves. My mantra has become minute by minute, day by day, breathe deeply, in, out - 1,2,3,4….

However, those moments of discouragement, helplessness and frustration pop up, at times, out of nowhere at all. In the blink of an eye, my own personal and internal sadness suddenly leaps forth and display itself, usually when I am the least prepared to deal with the situation at hand.

Often I liken my sadness to a small child, who blurts out the most embarrassing information, for all to see and hear. At these times, I become somewhat flustered, and try so hard to control my reactions, so as to minimize the distraction, continuing on as if nothing had happened or had been said.

Last night, I attended Yohan’s parent/teacher conference where all the new teachers introduce themselves and the curriculum, rules and policies. When the staff started talking about all the exciting field trips, hikes, museum tours planned for the year, my mind started to wander into the forbidden territories of melancholy and gloom. By the time I realized where I was, turning back was no longer an option. I angrily ruminated on all the potential difficulties and improbabilities Yohan would have to face when considering these trips.

“There is no way in hell he can walk 5 miles for a tour of the Headlands Institute”, I thought (his muscle weakness, fatigue and neuropathic pain hinders his mobility and stamina)! Ah, the California Academy of Science sounds great, if standing and looking around for hours were a true possibility. It is not. How about ice skating? Wow, looks like so much fun, unless you can’t ice skate. Oh, that 2 week trip to Prague which requires bike riding and walking from town to town? No thanks, I’d rather stay home.

Suddenly, I realized that the negativity had to stop, because it would neither help me, nor Yohan in the short or the long run. So, I honored those feelings, thanked them for showing their face and focused on directing my attention to potential solutions and ways to circumvent the issues at hand.

Soon thereafter, the meeting came to a close, and I made a beeline to the biology teacher who is organizing the Headland’s Institute trip. Yes, she has already been thinking about how to include Yohan. She plans on making a few phone calls to see what can be done to minimize his walking and maximize the experience. Her awareness, proactive stance and empathy soothed my anxieties. “It will all work out”, I tell myself.

I feel thankful and move on to the English teacher. This is her first year at Yohan’s school and not yet up to date about Yohan’s CMT, which somewhat affects how much and how long he can write. As I am giving her a baseline sense of what CMT looks like, by detailing a few of the symptoms (nerves gradually die, muscles weaken) my gut suddenly starts to cramp, my breathing accelerates and tears are rising up to fill the corners of my eyes. Addressing the inner mechanisms of my psyche, who hide cowardly behind the curtain in OZ, I plead, “Pleeeease, not now…later….I’ll address these feelings, at a more appropriate date and time…I promise! I bargained hard and well, because from one minute to the next, I felt a calm overcome me, and I was able to gather the control and strength needed to finish the conversation coherently, intelligibly and rather superficially.

On my way home, I wonder how Yohan himself feels about his limitations. It is not a subject I bring up often, if ever at all. Am I projecting my worries, fears and sense of injustice on to him? What if his point of view and perspective on his life and his CMT differs vastly from mine? My plan is to ask him……tomorrow ……. And I did.

(To be continued).