post by Sam Hernandez
My experimental musical instrument is finally complete. I call it the Chime Forest, because that is what it looks like and that is what it sounds like.
The chime forest consists of 18 glass vases. Each vase has an electric motor suspended above it that can be raised and lowered. The motors have various things attached to the ends that throw the rotation off balance and make the motors jiggle. When the motors are lowered, they collide with the vases, making a tone. Since the motors are unbalanced, they bounce off the vases and then collide again, creating a fairly regular but unpredictable rhythm.
The vases can be tuned by adding water to the inside; adding water lowers the pitch of the vase. Each vase can be tuned about an octave, so the instrument can be tuned to any desired scale. For this posting I've left out the water, since the vases already cover a pretty wide range of notes:
The only additional control is an on/off switch. This switch activates or deactivates the motors. The instrument can still be played even while the motors are off, but it won't have quite the same sustained rhythmic effect. One use of this switch is to pre-set the motors up or down, so that turning on the motors will activate a specific "chord", and turning it of will stop it.
Since the chime forest is a fairly large instrument, it has been designed for easy assembly and disassembly. The wooden frame can be assembled with no tools. The wiring still requires a screwdriver to attach, but a future revision might be to add plugs in place of the screw terminals.
Here is an example video showing the chime forest in action:
CHARCOT MARIE TOOTH
post by Tim Phillips
I have been pondering the topic of grieving & CMT for a while as a blog post I need to write. Last night I happened upon a thread from a teenager talking about the realization of grieving for her loss of function, then others, from multiple generations, responding with support and ideas. It made me remember that this is something I’ve been dealing with since puberty, something I have embraced but I’ll never leave behind.
This is the thread: [click here]
The CMTA have launched a new website and within it is a wonderful thing, something I was trying to achieve here but to no avail. They have created a network, not dissimilar to facebook, where organized conversations and advise around CMT can take place, more importantly IS taking place – it’s brilliant and long awaited.
I’m realizing that my ‘CMT creates music’ project is more successful at reaching people that are not in the CMT world, and I’m delighted with that, but a centralized forum for discussion around CMT is very exciting for me – we’ll see if it stand the test of time, it has an obvious danger of homogeneity.
It was only a few years ago that I managed to put a word to what I was feeling and experiencing (grief), and I was amazed, relieved and intrigued when I finally did. Grieving is something I always imagined would be done over a discrete event. Someone dies, you grieve; you get divorced, you grieve; there is some great disaster, you grieve – but then you move on. Well this is more complicated because what I am grieving, (loss of ability, mobility, feeling etc.) is also changing. More specifically it changes in waves; my condition will worsen, then it’ll stay the same for a while (sometimes a year, sometimes 5), then it’ll worsen again. So my grieving is also an ongoing process, which can be confusing to say the least.
I’m sure everyone has their own style of grieving. Mine seems to involve a lot of personal reflection, this is time often alone doing a completely unrelated activity, more than likely with a little too much vigour (perhaps building instruments!). This time is crucially interspersed with a strong need for communication, friends, family, expressing what I’m feeling (perhaps even writing a blog post!).
Most people have heard of the Kubler-Ross ‘stages of grieving’ or ‘stages of dying’ as it was originally intended: denial, anger, bargaining, depression and acceptance. I don’t believe that I have any specific emotional stages or order to these feelings, as Kubler-Ross would suggest, but it is helpful to see these words and use them to find my own logic to what I might be feeling. For example, on reflection I can often see that I am neglecting to recognize a new loss of function, I carry on regardless and as a result, I am denying myself and hurting my body. Then I need to face up to whatever has changed, which happens differently each time.
There are clearly dynamics to grieving and it is something that comes and goes. I’m now comfortable in knowing that when it goes, it will always come back and that there is nothing wrong with the sadness and curiosity that comes with it. I think it is a key aspect to living with CMT and too often passed over in place of concrete physical measurements.
As you are reading what seems to be a testament to my acceptance of lost function, please don’t think things are that simple – I pride myself with many trains of thought. For example, I’m an optimist by nature, although hopefully not too annoying with it. That optimism has led me to undertake a recent tendon transfer surgery that could reduce pain in my foot and improve my mobility, definitely not an ode to accepting my lost function. I’m currently sat on my sofa in discomfort, recovering as I write this post, so I have no idea yet of how successful the procedure was.
I truly believe that this surgery is the best educated choice, for me now, to try and improve my situation, but I’m well aware that it is also another piece of hope to hold on to and I’m grateful for that too. I guess the point I’m trying to make is to bear in mind that anyone with a chronic disease will not only change in their abilities but in their thinking, so not assume that what you formally knew is absolute.
This is an interesting article that goes into a bit more depth on CMT and grieving if you’re interested: