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 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.
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.
2. Raise money for the research – $5000 goal
This one we’re just short on, we’re at $4752… 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 excitment to come:
Please have a look at our website and blog if interested: