Machines in Safe Places

The completion of instrument #10 marks the build up to our grand finale to be held at the Oakland Museum, CA.  It also brings one more CMT voice to the project with a wonderful post from Kristin Conover.

If at all possible, please come and find us in the Oakland Museum as part of the We/Customize exhibit.  Whether you have CMT, are a friendly face or you just want to be thoroughly entertained, we'd love to see you.
Facebook Event Page [HERE]  Please share it around
March 8th, 9th, 10th, 2013.


INSTRUMENTS (#10)
Machines to make Machines 
by Tim Phillips

The Mechanical Drum Machine is pretty much complete, but not without a storm of activity and collaboration from a lot of people.  With the goal of being a public interactive instrument, quantity and quality have become an important part of scaling up the Machine.  I thought I'd take you through some of the fun I've had sourcing all the parts.

Gears:

The largest obstacle was the gears and my greedy designs demanding nearly 100 of them. Given that one gear took about an hour to cut out by hand, I was looking for a machine to do the work for me when I got an offer that was better than I dreamed of...

A local fabrication company called Group Delphi were excited by the project and wanted to collaborate.  They very kindly offered their expertise (and the most state-of-the-art CNC machine I've ever seen) as a donation to create all the gears we would need.  Given that I'm building a big machine as a musical instrument, you can imagine how excited I was to see all of my imagined gears being precisely cut out by an even bigger machine.

Wanting to share that excitement, here is a nice geeky video for you of the CNC machine cutting out the gears.


A big thank you to John Bradford and all at Group Delphi who helped make this possible! (That's John below).

Clips & Sticks:
Binder clips and drum sticks are very cheap, so we could just buy those, but we needed a strong reliable motor to drive the whole thing. I have a number of mechanic friends who all enjoyed (a little too much) discussing my best option and sent me off on my virgin voyage to something called the 'Pick 'n' Pull' to find a windshield wiper motor (chosen for it's durability and high torque at low speeds...). 

Motor:
The Pick 'n' Pull is a highly organized scrap yard.  There are hundreds of cars, each up on blocks in varying states of dismantlement.  It's so simple, but kind of a genius sustainable practice.   If you need a part for your car, you find a car like yours, then find the part and take it out yourself.  Then you know how to put it back in your own car, plus it is cheap.

The durability of the windshield wiper motor was proven, as absolutely every one of these cars still had it, i.e. no one needed a replacement.  This made it hard to choose which one we should take.  We settled on the Ford Focus, mostly because the engine was gone making it easy to work on.

Electronics
A motor is fine, but it is better if it's running and even better if it's got buttons and knobs to control the speed.  From mechanics, to electricians - enter my ever generous friend Sam.  Sam not only worked out how to change the speed of the motor without loosing torque or over-heating, but he also got me in on the soldering action and pretty much understanding how it works.

What else...?
Magnets:
I found a stash of old hard drive magnets on ebay.

Sheet Steel:
The sheet steel for the tabletop was kindly donated by the firm I work for:
Gyroscope Inc. | Artists, Architects and Designers

This just left a bunch of tinkering, cutting, screwing and painting, although there is still plenty to get done before unleashing the Mechanical Drum Machine at the museum.  However, it does now work and we got to test it out on the public down at the Bing Concert Hall at Stanford University with Thingamajigs and CCRMA.  It is a lot of fun!

Here's a little sample:





CHARCOT MARIE TOOTH

A Safe Place or: How I Learned to Stop Worrying and Love the Community
by Kristin Conover

I am the only person in my family with CMT and growing up, my body was not a safe place. The falls and clumsiness made it unsafe physically, and the teasing made it unsafe socially. I saw doctors and they made guesses about my oddly shaped feet and recommended surgeries. I quit any physical activities by junior high, but didn’t receive the correct diagnosis until my first year of college. I cried for a long time – months, probably. The worst was all the unknowns and my youthful imagination. They say that the first phase of grief is denial, but for me it was worrying. No one would ever be attracted to me and even if someone wanted to be with me, I would only be a burden. At the end of a string of worries, I inevitably imagined my future self in sweatpants, alone, unable to open a jar of bargain chocolates.

I guess it was a few months post-diagnosis that I entered into my second phase – denial. It might sound strange, but for five years I didn’t believe I had CMT. Most of my friends didn’t know and I forgot to mention it to people I worked with or dated. My doctors didn’t act like it was a big deal and my parents followed suit. I didn’t think I really needed the orthotics and ankle braces I was prescribed and I could walk without them. Forgetting protected me and I felt safe again – knowing but not knowing, real but not real, CMT but no CMT.

Denial felt safe, but it was unsustainable. A cross-country move and training as a therapist jolted me out of my state of suspended emotion. Most important was the experience of meeting other people with CMT for the first time. I attended meetings of the Boston CMT Support Group and participated in events to raise money for CMT research. Unlike my experiences with able-bodied doctors, people with CMT had answers to the questions I really cared about, like where to find good shoes and how to tell friends and partners about CMT. Mostly though, it was great to hear that other people shared my worries and experiences. Looking back, forming connections marked my third phase of adjusting to CMT.

It was hard to leave Boston and its wonderful CMTers, as I learned to call us, to move to a California beach town with no CMT support group or fundraisers. I was just beginning to feel safe in my body and I liked it. That’s when I turned to a dear friend of mine, the Internet. When I was diagnosed six years earlier, CMT websites were scary places. I was an able-bodied person, despite all the evidence, and these websites featured pictures of people in wheelchairs. Googling my disease always ended with tears. Now, however, my in-person connections provided me with a foundation to overcome these fears. I joined a CMT Facebook group and began chatting with and friending other CMTers. I posted my thoughts and questions and responded to posts from others, sharing stories of falls and pedicures, information about braces and feet warmers, pictures of surgeries, and decisions about having or not having children. I became part of a supportive CMT community that got it and was there for me any time of the day or night.

Being given so much by CMT and CMTers, I developed a desire to be more active in disability communities and work to improve the lives of people with disabilities. Those people that I once ignored and then feared, I now see as “my people.” The perpetual student, I am currently working on my dissertation exploring the impact of negative disability-related social interactions on people with disabilities. Not only has the CMT community made me stronger than I would have been without CMT, in my current phase it has also given me a sense of drive and purpose. I still feel frustrated and sad at times, and I’m often in pain, but I also feel friendship and happiness and love directed toward myself and toward others like me.

To end with the requisite life lesson, I guess I’ve learned that true safety, the kind sturdy enough to get you through the really hard times, isn’t inherited. Safety is created and it is shared. My body is a safe place because I care for myself and allow others to care for me too.

Steady Beats to Transfer Tendons

INSTRUMENTS (#10)
by Tim Phillips

Progress is being made on the new Drum Machine! I'm still searching for a better name, if anyone has ideas.

Although my initial mock-up proved the concept, it grew disappointingly limiting very quickly.  
This was it if you missed it:  
Here are some of the issues I have been trying to solve:

1. As exciting as cranking a handle is, I quickly realized that I needed the gears spinning at a steady rate to allow any real exploration of rhythms
2. Another issue is that every other gear alternates which direction it spins, but the ramp only works in one direction.  I need something that goes both ways but still has the sudden drop so that the stick strikes the drum.
3. Most importantly, it needs to be easy for anyone to change and play with the rhythm.

Firstly, I set to work cutting out plywood gears.  While it is really satisfying to learn that you can cut out a wooden gear by hand (thanks to Matthias Wandel!), after doing 6 I’ve already started looking for access to a CNC machine!

I managed to get the gears running on a motor from a disco ball and began testing an alternative to the ramp.  This was a real maker geek moment for me, (I’m sure there is a specific term for that) the iterative process and the proud smugness I felt following the solution!

It went like this: Ramp; different shaped ramp; double-sided ramp; pipe; ball; ball on string; pipe on webbing; binder clip on webbing; success.


Here is the end result:
The webbing allows the clip to fall either way, and the clip acts as a sprung ramp in either direction.

The best bit though is that everyone knows what to do with a clip - Squeeze it... take it off, put it on... making it easy for anyone to mess with the rhythm.

Notice that you can also control the volume of the beat (i.e. adding accents) by using bigger or smaller clips...


Next up is sourcing the parts to make the real thing!


CHARCOT MARIE TOOTH
post by Tim Phillips


You are all part of the CMT circle now, so I thought I’d introduce a topic which is always hotly debated among CMTers, it is that of surgery.  It is debated because of its mixed success rates and very likely a wide range of expectations.  Almost a year ago, I had extensive surgery on my foot.  I am comfortable now saying that it was a success and wanted to give some insight into the experience.


Hopefully you remember that CMT affects the peripheral nerves, over time this causes the extremities to deform in different ways.  My issue that the surgery hoped to address, was with my right foot.  Ok, so remember that nerves in the body not only control the senses, but the motion of all our muscles too.  As I grew older and my peripheral nerves degraded, I not only lost the feeling in my feet, but also the mobility.  One by one the tendons (which attach to the muscles) gradually shut down.


However, for some unknown reason, in the foot there are two tendons that remain unaffected by CMT.  One pulls the foot down, and one pulls the foot inwards.  Although it is great that something is working down there, this causes a problem which is unaffectionately called ‘Club Foot’.  The reason being that the foot is unbalanced, constantly diving down and in, resulting in chronic pain in the joints.


The surgery I had is simple in theory, yet marvelous (and extremely painful) in reality.  The idea is to balance the foot.  The surgeon detaches the tendon that is pulling the foot inwards and reattaches it to the top of the foot to pull the foot upwards.  Therefore you’re left with one tendon pulling down and one up; a balance; no more constant pressure; no more constant pain.  

A couple of 'how-to' diagrams...

As I said, this worked as planned for me and I’m very glad to have done it. I’m now without that joint pain and a lot more stable.  Although successful, it must be said that I wouldn’t wish the surgery and recovery on my worst enemy!  My foot was completely immobilized for about 7 weeks and I was tortured by highly trained people throughout.  

During that time I started to note what I was thinking about my foot, I’ll leave you with a few of these thoughts...

• There is something fascinating about moving really slowly
• It’s not my foot
• Progression to the next stage comes with delight, fear and sadness
• Twin Peaks on Norco is something else!
• So much time 
• Note to self, don’t let drunk friends write on cast just before spending a week in a children’s museum
• Ooh, it’s so scaly
• I guess I didn’t really realize the extent of what they were going to do to me, perhaps that’s a good thing
• This might take a while; I should learn how to live life like this rather than waiting until I’m better
• Ha ha! I can walk  [veeeeeery slowly].

(For the docs and other surgery goers, this is what I had done: Transfer of posterior tibialis tendon through interosseous membrane to dorsum of foot; transfer of peroneus longus to brevis; Steindler stripping)

Drum roll please...

Thank you everyone who helped us get to this 10th instrument - we made it.

In celebration, we're going to make this one extra special.
I have just a few clues for you as things are emerging:

- It is going to be an analogue drum machine.  
- It will be exploring cross-rhythms & patterns (both visual and sonic)
- It will be the 1st of our creations to explore customizing an existing instrument (the drum kit)
- It will be fantastic

If that's not exciting enough, we're also in conversation with the Oakland Museum of California, with the possibility of showcasing our work & performing with the public as part of their pioneering We/Customize exhibit in the New Year - With yours truly as an Artist in Residence.

Here is a peek at the first prototype:

The last $48?!

In support of CMT awareness month, I did an interview about this project with Parsimonious Pash.  It made me realize that we need one final push to reach our goal of $5000.

It's a bargin offer really, for $48 (that's all we need) the world will get one last musical instrument created in the name of CMT; a bunch of exciting posts along the way; and the Charcot Marie Tooth Association will get the extra bucks for research on treatment and cures... and they're getting closer every day.

So come on, anyone have some spare change? Donate HERE

CMT creates: music - Interview with Tim Phillips

by Parsimonious Pash

I read that you have Charcot-Marie-Tooth Disease, as do I. When were you diagnosed and have you been diagnosed with a specific type?

I have CMT1a, it’s the most common type of Charcot Marie Tooth Disease and for that I’m lucky as the most is known about it, but I’m the first case in my family, so no-one knew what to look out for and a lot of the symptoms seem like clumsiness in a child as I was growing up.

I was diagnosed haphazardly around the age of 18. I graduated from high school in England and immediately headed off on a coastal camping trip to celebrate, which was a lot more beach and beer than tranquil backpacking. I never did well on sand and sure enough i hurt my foot and it swelled up. It didn’t hurt though, so I carried on for a week before going back to my parents house. It was still swollen on my return, so my folks sent me to the doctor, who sent me to the hospital. After x-raying my foot the doctor was confused to inform me that not only was my foot broken (although it didn’t hurt), but there were 14 other fractures that had healed without me ever knowing and another 16 in my other foot. A long, drawn out process followed which narrowed it down to CMT and confirmed it with blood tests. Looking back, my parents knew there was something funny, but no-one could place it because I was missing the biggest clue; I didn’t realize I couldn’t feel my feet. Just like no-one would expect to feel something like their bones, I didn’t expect to feel my feet. It’s really hard to notice something you can’t feel.

How has CMT impacted your life? Has there been both positive and negative ways that it has affected you?

Ha! Yes, both I guess, but it depends when you ask me.

CMT is a really draining and annoying disease that varies from being inconvenient to painful quite unpredictably. Balance, fatigue and dexterity are my biggest issues, I’d certainly rather I didn’t have it. That being said it has quite definitely helped define who I am, and I'm happy with who I’ve become. CMT strongly influences what I can and can’t do in life, and when you can’t do something, there’s always another option. My restrictions are pretty much physical which has always pushed me to creativity as a solution or an alternative. An example, I love being outdoors but its hard moving around sometimes so I always rest. When I do I look around, talk, draw, sit, think – I do a lot of thinking. By not being physically able to do something makes me constantly question what I’m doing and pushes me into exploring new ideas in artistic ways. Another example is this fundraising project I’m working on, ‘CMT creates: music’. A lot of people would do something like get sponsored to run a marathon to raise money for charity, that doesn’t work for me so I decided to get sponsored to invent musical instruments.

What made you want to start ‘CMT creates: music’?

It was a coming together of ideas. I had moved to California and begun attending a CMT support group where not only did my knowledge and confidence around CMT grow, but I also learnt about the CMTA’s research program towards finding treatments and a cure. This was shocking to me because at this group I was both meeting other people with CMT for the first time, AND they were talking about finding a (previously impossible) cure. At the same time I was feeling a yearning to get an art project going, one that was bigger than me and involved the excitement of unknown collaboration.

So I dreamt up this plan to get sponsored to invent new musical instruments. $500 = a new instrument. Each one would be invented by a different person and we’d post the whole process online, alongside personal stories of living with CMT. It’s this intersection where the project has been most interesting, allowing the two separate worlds to mingle and meet one another, even if only being read in the same blog post.


What is your goal with CMT Creates Music?

There are lots of goals and they’ve all been surpassed except one.

1. Spread awareness.

Thousands have viewed the website from 60 different countries. Most people around me, or connected to me can now tell you roughly what CMT is and many of their friends and their friends friends too. The project has worked well at bringing the topic of CMT, in an interesting and engaging way, to an audience that has little or no connection to the disease.

They look like a crazy, fun bunch!

2. Raise money for the research – $5000 goal

This one we’re just short on, we’re at $4952… If anyone has $48 we’ll make our goal and I’ll make one more instrument! (Just follow the link… http://www.firstgiving.com/timjohnphillips)

Although we’re still looking for that last bit, I really had no idea we could raise this much money, people’s generosity has astounded me. I thought this might last a month or two, but with such enthusiasm and support we’re now 2.5 years in.

During that time the research has been going incredibly well. They’ve found the cause of CMT1a and the science behind how to treat it and are now working through all the rounds of testing. (You can read more about the CMTA StarTransformation Project.)

3. Create a collaborative art project

So many ideas and people have come together that it has far exceeded this goal.

-Many CMTers have found a voice in their blog writing: opening up a new dialogue, one has gone on to have an award-winning blog following her very first post on our site: Nattering Nic

- Many new friendships and connections are already spinning off into different projects.

-The quality and ingenuity of the instruments created was unforeseeable, with such variation due to the breadth of the makers.

 -We’ve used the instruments as a vehicle to discussion in many locations, but a huge highlight was being selected to perform the instruments at the renowned music festival, Thingamajigs. It was such an amazing moment to see where this project had led, from nowhere to center stage with 9 musicians and these incredible contraptions, all while carrying forward the voice of CMT. Here’s a video of the show, I hope there’s even more excitement to come:

Please have a look at our website and blog if interested:

www.timjohnphillips.com

CMT Creates Music Blog

'CMT creates: music' live at Thingamajigs

Well who'd have thought it? A couple of hundred people showed up to see us perform all our instruments as part of the Music For People and Thingamajigs Festival. For a moment, we were famous. I got to tell all those people about CMT and then got to have more fun than is imaginable with a load of old junk and a lot of friends! 


There is no doubt that this was a huge success and so full of energy because of the many people that came together to make it happen. The collaborative creativity is what keeps this project fresh and experimental, once again I'm amazed with what we achieved and feel like it has reached it's next level (not that I know where it's heading). 


The composition brings these somewhat brash and disparate instruments together in an unexpected beauty. I have received a lot of positive feedback from people that I highly respect in this niche of instrument building in the Bay Area, but even people who have never intended to sit through a new music concert told me about their fascination with the piece, how they were captivated with the authentic experience of watching these big machines visually making the sounds that are heard.


This is praise indeed and I'll take it with pleasure! The project goes on, something will happen next and hopefully with it more people will become involved, but until then please have a look at our video of the performance (below) and share it around. 


The piece is called - . - . - - - [which is morse-code for CMT, and also the signature theme in the 3rd movement]...

Last Two & a Mom's Mission

INSTRUMENTS (#6 & #9)Well here are the last two creations, as promised for the money donated, Thank you.
[For every $500 donated, we invent a new musical instrument]. Having said that, we’re only $150 off of starting the next one, so if anyone’s feeling generous… click here :)

Stringtotter:
Made by Nao Nakazawa, joined in performance by Sam Hernandez

Bartz Box:

Made by Charlie Gurke, performed by Claire Phillips

CHARCOT MARIE TOOTH
With the completion of the instruments, it is easy (and fun) to get caught up in the excitement of showing them off and exploring what they can do, hence the festivals and performances we're involved with. Thank you Jeana for writing the following post so we can keep the fundraising and awareness of CMT moving with the same enthusiasm as the instruments. (Tim)

Mom's Mission
post by Jeana Sweeney

As I tuck my two beautiful girls into bed, I give myself a little pat on the back and think, “Well I made it through another day.” Being a mom with a disability can sometimes be very challenging, so I feel much rewarded when the day ends, and I know that I gave my children everything I have.

I have been living with a disorder called Charcot Marie Tooth since the age 15. Charcot Marie Tooth Disorder, also known as CMT, is the most commonly inherited peripheral neuropathy. It affects 2.6 million people worldwide. Progression is slow, causing loss of normal function and/or sensation in the lower legs/feet and hands/arms. The symptoms and characteristics of CMT are tripping, ankle sprains and burning or pins and needles sensations in the feet or hands. They also include foot deformities such as high arches and hammertoes. CMT causes muscle wasting in the lower legs and feet and muscular atrophy in the hands, often causing people to have difficulty with tasks involving manual dexterity, such as writing and manipulating zippers and buttons.

As the alarm goes off at 7:00am, I lay in bed, and my legs are pounding in pain. I think, “Lie in bed or go in enjoy my day?” I always choose to go enjoy my day!! As soon as I hear “Mom are you up?” l put my pain aside, smile, and start my day. Sometimes it does get upsetting to me that I have a disability. The little things that people do everyday are sometimes frustrating to me, like opening a new box of cereal or cutting an apple. I have taught my “little ladies” to be very patient with me because it definitely takes me longer to button up their coats than it does for their daddy. My oldest knows that I cannot participate in a game of softball, but she knows that I will be the coach in a heartbeat. It’s not about not being able to do things, it just means I have to change the way I do them.

The day the doctor told me that my youngest daughter has CMT, I cried for days. There’s a tremendous amount of guilt that goes along with knowing you as a parent passed a disorder on to your child. Being that CMT is inherited, your children have a 50/50 chance of having it. After I wiped my tears away, I promised myself that I would try to be the best role model for her. My goal is to show her that she can live a fulfilling life even though she is living with CMT. I try to be one step ahead of her CMT progression by scheduling physical therapy sessions once a week. She also does therapeutic horseback riding once a week from spring to fall. As parents, I feel it is our job to educate ourselves and be the best advocate we can be for our child.

I have been involved with the CMT Association (CMTA) for over eight years, I started by being the co-leader for the support group in Johnstown, PA, which holds over 100 individuals with CMT (one of the largest in the country). I slowing started doing fundraisers and raising awareness. With the news of my daughter and the CMTA starting the STAR Program (which is an aggressive research program), I become a vigilant advocate for raising awareness and funds for CMT.

I call this a MOM'S MISSION!!!

I have never been ashamed or embarrassed about having a disability and neither should anyone else living with one. I truly think that one of the most interesting things about me is my CMT, because when I am telling someone that I have CMT, I am teaching them at the same time.

Interactive Instruments - Performance #2

Wow!

Friday night was over-whelming and an incredible success. Claire & I were invited by Thingamajigs to present two of the project instruments (Sound Swing & Bubble Organ) at a DIY art street festival called SubZERO. Let's just say that we had no idea what a big deal this was...

We set them up in a deserted street with a number of other artists. Then all of a sudden, 6 hours had passed and something like 1000 complete strangers had played, discussed and listened to our instruments.

Here it is in full swing:

(the woman playing the glass jars on the approach is Danishta Rivero - really interesting music)


Between us we spoke to pretty much everyone who stopped by, whilst showing how to use the instruments to make new sounds. We were amazed and delighted at how truly captivated people were with these creations, which subsequently served as perfect social objects to talk about CMT and the project. We let people interested in more information take postcards, which ended up being hundreds from a complete age range. It even got to the point where people were actually coming back to find us a second time.

This is the postcard: (double-sided)

Come the end we were past exhaustion and filled with enthusiasm, being not quite sure what just happened. CMT awareness was definitely raised in a very positive way, and I can only hope that we inspired some inventing & experimentation over the weekend.