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)