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]...
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.
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.
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.
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)
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!
The production of instruments is still very much on the go, but to celebrate the New Year we had a small performance with four of the experimental instruments and a saxophone.
Neither the sounds or picture quality are great, but there should be plenty of enthusiasm to keep you entertained. Please check it out, share it around.
There is still a bigger exhibit/performance in the works featuring all the instruments – I’ll let you know when it’s coming… (these things take time).
Walking is one of the biggest conundrums with CMT, special devices called AFO's (Ankle Foot Orthotics) help solve it. Here’s a video a friend of mine made that does a great job in showing just what those AFO’s do. Thanks Geoff. (Tim)
