Funky or Vanilla?

I have the pleasure of introducing instrument maker #7, Will Longstreth, who brings an expertise in bikes to the project (and all the mechanics that go along with them). Will has chosen to take the cryptic approach to blogging. An equation in pictures definitely has me intrigued as to where he's heading, all I know is that it sure looks pretty! (Tim)


INSTRUMENTS

Bicycle Music Box?
post by Will Longstreth

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CHARCOT MARIE TOOTH

Funky or Vanilla?
post by Nicole Burggraaf

In a few weeks, I’m being casted for my new AFOs. The docs are hoping that wearing
AFOs during the day at work will buy me a bit of extra stamina at the end of the day.
A bit of extra energy to help my husband prepare supper (much to his chagrin as my
specialty does not expand beyond Hamburger Helper), play with our son and be able to
stay awake beyond 9PM.

I have not had AFOs since the sixth grade. My experience with them was short. I did not
think they were much of help – but in hindsight I think that was the vanity of being 12
had a lot to do with my reluctance.

A few months ago, our 4 year old son (and fellow CMTer) was casted for his first pair of
AFOs. The design of the AFO has not changed in the twenty years since my first pair.
They are still pretty much reverse shin pads that extend down over the foot. But what has
changed is that AFOs can be customized to become one of a kind. There is a catalogue
of funky prints that can be placed over the AFO and an assortment of colours for the
velcro straps. Gone are the days of the vanilla white AFOs and bright white velcro
straps.

Our son chose a kid-appealing print of cars and trucks over a blue background. He
also chose black straps to compliment the tires on the trucks. When we returned
to the orthotist a few weeks later to pick up his AFOs, our son was so thrilled
with them that he threw a fist pump into the air and a resounding “YES! Cool!”

I’ve spent the past few weeks debating whether or not to stick to the plain Jane vanilla
coloured splints or choose a bright colourful design. (I should also note that our son
is petrified I’ll choose the car and truck pattern. Already at 4 he recognizes having the
same taste as his Mommy is SO-NOT-COOL!)

I’ve kept the CMT part of myself pretty low-key to the public at large. I walk with a
limp that I think most people assume is just a nagging injury. My surgical scars are well
healed and not very visible. The only time people really quiz me is when I’m using my
cane in the winter months.

Its not as thought I’m ashamed of my CMT that I feel I must closet it. But I always
fear that if I go on to much about it, people will think I’m belly aching. And I always
think about the boys with Duchenne’s at my neuromuscular clinic visits when I
was a kid. CMT – at least how it affects me – is so lightweight in comparison.

And here lies my dilemma. Which is less likely to scream “Look at me y’all, I’m
DISABLED” and more likely to give off a vibe of “My legs need some extra help, but its
cool.” The funky AFO or the vanilla AFO?