Tuesday, June 1, 2010

I cannot stand on a moving bus

With this blog I'm very excited to introduce Nicole Burggraaf who has kindly offered to write a post on CMT. I'm excited because the project is working, a network is forming - please read, comment and share to make it stronger. Nicole and I haven't met in person, but we have 'CMT creates: music' in common!


post by Tim Phillips

Modular Bubbles.

In thinking about how to develop the bubble organ, I decided it would be most fun if it was very flexible in its configuration. I.e. It could be set up in a whole number of ways. In the spirit of the project, I also decided it should be possible to make it a social instrument to play. For this reason I've decided to make each note (manual pump & sounding tube) an individual module. Then you can just set up some or all of the notes however you like. They could be a giant circle so many people have to move around to play it, or a select scale arranged so that one person can play, and everything else you can imagine...

This will probably make more sense if I show you the single note module I've made.

It is very similar to the last prototype, just a little neater. Having two of the same bucket means they slot perfectly together and there is no need for guides. Hanging the weights that close the valve inside means they can be anything so long as they're heavy and they don't get in the way. I'm pretty happy that the design is getting simpler (if bigger) as I develop it - surely a sign of progress.

Here's how it works: (blackboard style)

post by Nicole Burggraaf

I Cannot Stand on a Moving Bus.

I lost my virginity in university. No wait---let me clarify, (less my parents be reading this who – despite my marriage and 4 year old son – still believe to the core that I still have mine) I lost my CMT virginity in university.

Although I walk with a limp and my feet are surgically carved like a Thanksgiving turkey, my CMT goes largely unnoticed. The only years I found CMT a true struggle were my middle elementary school years when I found myself in a school where teachers coveted athletic prowess over intelligence and with kids whose taunts could make Kim Jong-il cry. But time passed, kids forgot the lyrics to “Walk Like a Nicole” (to the tune of The Bangles “Walk Like an Egyptian”) and I had the most wonderful grade 6 teacher who boosted my self-esteem by encouraging my love for writing.

Being symptomatic as a toddler, I’ve unknowingly crafted my little “Nicole ways” of coping with my CMT. I don’t purchase anything with small buttons, as my shaky hands can’t do them up. I instinctively know when to sit down and take a break when my legs are getting tired. I married a man who makes the bed, as my arms are not strong enough to lift the mattress. (He also gives me pedicures to keep my calluses at bay, uncurls my hammertoes to clip my toenails and massages out my leg cramps. He is, indeed, “One of the Good Guys”.)

So to summarize, up until university, I had never really viewed my CMT as a disability. It was more like an everyday annoyance….like soggy cereal or Celine Dion.

When I was 19, I moved 45 minutes down the road to “The City” to earn a degree. University was filled with fabulous firsts – my first time living away from home, my first time having a roommate, my first time eating Norma’s – the cafeteria lady – Turkey Schnitzel. It was also my first time relying on public transportation…namely, the bus.

The first time I took the bus, it was to go downtown for a Frosh pubcrawl. It was basically an attempt to make the first years on my residence floor a cohesive unit of togetherness via booze….lots and lots of booze. (Incidentally, this works. Drunkenness = public puking and/or making out with a stranger = drunk stories = friendship.)

So we all piled onto the already crowded #7 bus and a grabbed the overhead pole, designed for standers to have something to brace themselves with, and continued to chat with my fellow froshers. The bus lurched forward and I fell forward and onto the lap of a stranger. I quickly apologized, made some lame joke about getting my sea legs, stood back up and rejoined still standing friends. I clung for dear life – while trying to maintain a casual outward appearance – waiting desperately for a seat to become available. For the record, I made it downtown but how we got home still remains sealed in the “Lost life of Drunk Nicole” portion of my brain.

I quickly grew accustomed to university life. I learned to save my quarters for the washing machine, that attending group sessions was more important than attending lectures and that eating poutine every night at midnight will cause you to gain 15 pounds in 8 weeks. **tear**

Everything about university was great…except for the bus. I would find myself walking a few bus stops down in hopes of getting on before the masses to secure a seat. A full bus would approach me and I would have to quickly debate whether to stand or wait for the next one in hopes it would be less full.

Now – this is where the non-CMTer is probably wondering: “Why doesn’t she just ask someone for their seat?”

OK. So bus pulls up. You get on to discover the bus is full. The front seats are designated “Reserved Seating” and the decal features hieroglyphs of a pregnant woman, elderly person with cane, person in a wheelchair or person with Seeing Eye dog. No where is there a hieroglyph of a 19 year old girl with a less than visible disability. Then, if you do ask for a seat, I feel compelled to launch into an explanation of CMT and its effects on me personally. I have yet to find a way to encapsulate CMT into a 10 second spiel so I’ve never attempted it. Then there is the fear that if I take a “Reserved Seating” spot, and someone who is depicted on the hieroglyph above me gets on, I will feel compelled to give up my seat. Because – really – the only thing visibly wrong with me was that I still listening to cassettes on my walkman!

One day I came to the realization that I could get a special bus pass, designating me as someone who was in need of the “Reserved Seating” despite outward appearances. So I got the appropriate forms completed by my family doctor, presented it to the bus authorities and was quickly granted a special pass.

I glanced down at my new, freshly laminated pass. There was my smiling mug and the caption “I cannot stand on a moving bus”. It was the first time ever I publically acknowledged that I have a disability. It was bittersweet. I was relieved I could ride the bus without having to play the “How can I get a seat/stay upright” game. But it was also the first time I had asked for permanent special status.

And that – for me – has been the most challenging part of CMT….acknowledging that it is a real disability.

In the grand scheme of things, Charcot Marie Tooth – is not the most haunting ailment/disease/disability out there. I’m sure the guy with Duchenne’s Muscular Dystrophy would look at me and my CMT and - rightfully - think “lightweight”. But on the other hand, there are millions of completely able bodied people out there who don’t have to cope with screeching leg cramps that come with CMT muscles or the routine scalding of your hands because you can’t tell if something is too hot due to severe neuropathy.

CMT has actually given me many things. The ability to overcome obstacles, the ability to laugh to keep the tears at bay, the ability to savor what physical abilities I have because, as CMT is a progressive disease, it may be gone. And it also reminds me that sometimes… I just have to take a seat.


  1. Nicole, thank you for writing this. What an excellent post. As a person with CMT myself, I relate to everything you said- being the wimp in gym class, the difficulty in standing on a bus, finding ways to cope, having a disability that is mostly unnoticed and especially savoring what physical abilities I have left. You are a wonderul writer and I hope you write more. In spite of the limited publicity it gets, CMT is widely unknown. We need to let the world know it exists, so at least that child with unrecognized CMT in gym class isn't labled as a wimp or lazy kid, or worse.

  2. You have incredible talent!! Just by sharing your story, you're helping those that have CMT realize the importance of not being afraid to experience life and those that don't have CMT, understand it better.