Grieving in the Chime Forest

INSTRUMENTS

Chime Forest

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

Grieving
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:
http://www.lindacrabtree.com/cmtnews/Grieving/Grieving2.htm

Tinkles and a Journey

INSTRUMENTS (#4)

The Tinkler Tinkles
post by hj mooij

The tinkler was first conceived as a noise maker, it's a simple design structured around an old bicycle wheel. The spokes are different tensions which produce different pitched tinkles when struck with a solid object.
It's really fun to play because there are a large variety of tinkles that can be produced. The spokes create differences in spacing at various distances from the axle which results in different rythums of tinkles. The wire frame is just for looks, but we did attach a small microphone to the frame and it made some really nice scraping sounds when played. I think it could be improved by creating some custom spokes made from different materials. . . the fun never ends.

CHARCOT MARIE TOOTH

Here is a wonderful post by Michele that is probably more pertinent to me than most, as I am to have a similar surgery next week. This is partly why I asked her to write it, but surgery is also a big question for people with CMT, weighing up the trauma and risk against alleviating pain and gaining mobility, so I wanted it discussed in this project... Either way I'm happy to hear and share Michelle's enthusiastic results (and steady myself for the patience I'll need). (Tim)

Michele has a great blog of her own if you'd like to read more: http://myjourneywithcmt.blogspot.com


My Journey Through Surgery
post by Michele

A year ago I set out on a journey, one that would be long and painful but one that should be very rewarding once I reached my destination. I am 29 years old and was diagnosed with CMT Type 1A in 2005. At that time, I met with a surgeon who could correct my insanely high arches, but there was a glitch...I wasn't ready! I wasn't even ready yet to know what CMT was. So I pushed it in a drawer and went on with my life. As time passed, my arches got even higher (my shoe sizes went from a size 6.5 to a 3!!) and the calluses in the balls of both my feet were worse. I had to go to the doctor on a monthly basis to have them shaved off and even then, I still hurt with every step I took. I also developed this terrible pressure pain on both thighs, my ability to walk or stand for long periods of time decreased, and I had no choice but to pull CMT out of that drawer and find the time to deal with it.

I did everything I could possibly do before having reconstructive surgery: physical therapy, acupuncture, several pairs of orthotics, expensive shoes, you name it. Life sometimes has a way of working itself out and I was moving to CT from NJ and had to quit my job. Since the job market isn't all that great and I didn't see any interesting jobs in my field (Marketing), I thought it would be a perfect opportunity to take time off and invest on my health by having two reconstructive surgeries, one on each foot.

I started my search for surgeons again around November 2009 and when I finally selected the best surgeon at the end of the year, he announced to me in January that he was retiring. I was frustrated and annoyed with him, but he promised that he would find me a great surgeon and that he would be there during both surgeries (and he kept his promise!). In February 2010, I met with Dr. Feldman, whom I immediately liked. He thought it would be a good idea to try an injection into my hips to see if it would help my thigh pain. Unfortunately the doctor that administered the injection hit a nerve and I was in so much pain that we couldn't go through with my March 17 surgery.

Finally on April 16, we were all set. No more delays. I had never been hospitalized or had any procedures done, so I was a bit anxious about diving into this unknown. On that day however, I was pretty calm. For me, the hardest part was making the decision. Once the decision was made, I was ready to go. I also prepared myself for the worst case scenario. I talked to several CMT patients who had undergone this surgery before me. I was ready for a year or longer in recovery. And most importantly, I was ready for the pain. The first night was extremely painful and difficult, there were a lot of tears. But I prepared for this journey with the support of family, friends, and loved ones, so I was not alone. Even though I live with my boyfriend, I prepared to spend about 2 months with my parents each time because they would be able to be with me almost all of the time. Believe it or not, time went a lot faster than I expected. Before I knew it, I could move again and I could start to step down with the walking boot. I returned home and started physical therapy. Within 3 months, my foot was no longer swollen (I mean, AT ALL). And almost immediately I could tell the difference between this new foot and the old foot, and was sure I had made the right decision.

Then, I started preparing myself for surgery #2, but this time, I felt more confident because I knew what to expect and the first surgery went so well. I knew what my timetable would be, how my body would react to the meds, I knew that even when time seemed to drag, that it would all fly by and I would be back to walking again. So we scheduled it for September 20. And just out of nowhere, 2 weeks before the big day, my surgeon's office called to move it to September 22, which wasn't a big deal but was kind of annoying. I point this out because life works in "mysterious" ways. One of the main things I have had with me through the process is faith - that everything would be ok. Six days before my surgery a recruiter reached out to me with a perfect job opportunity. And wouldn't you know that I interviewed on September 20 and 21, and actually landed the job!!!! They decided to wait for me for 2 and a half months while I recover!!! If this isn't a gift from above, I don't know what is.

Getting the job just made me want to get the process over with even more quickly. The first time around, I knew I would still go through a second surgery so I was pretty calm. But now that I have something to look forward to, I have been anxious for time to pass. It's now been 2 months since my second surgery and I've been moving around with the walking boot, soon I'll just be walking on my own.

I can't believe this year has gone by so quickly. I think it definitely has been my most trying year, by far. But as I get close to that finish line, I feel a sense of accomplishment. I really did what I set out to do. I feel that I am coming full circle. I won't say it's been an easy and rosy journey, it's been full of tears and many times over the summer, resentment that I could not go outside to enjoy my favorite season. But I'm almost done and I have learned so many lessons in life! Hopefully my new feet will be happier than my last ones and healthy for a long time to come!

Michele