Invisible Condition

INSTRUMENTS (#1)

Oh the bubble organ. I have a feeling that this will be the hardest instrument; that first child, so many expectations.

I have a fully working design, at least in theory. The problem is that so far it isn't feasible as it involves getting 24 air pumps. The design is as follows:

You rig a pump up so that it is constantly blowing bubbles beneath a pipe.

Once you have that wonderful bubbling sound, all you have to do is make a mechanism to stop and start it.

The drawing above on the left shows my best solution. Half way along the tube connecting the pump and the bubbles is a 'T' joint that connects in another pipe (the control pipe). The air would much rather go out of that pipe than through the water. It does so until the control pipe is covered, at which point bubbles are made.

So, as the following video demonstrates, every time you put your finger over the hole, a bubble tone is made!

The other way that works well is to cover the end of the tube that is making the bubble sound. If you do, no sound comes out.

This is all well and good, but air pumps are expensive, especially good ones.

The following pictures show you some of our failed attempts at finding another air source...

1. Heating a copper pipe so that the air inside expands, leaves the pipe, thus making bubbles. This actually works, but only makes about 17 bubbles even if using a blow torch.

2. Attaching a computer fan to a pipe, thus making my own pump. This one didn't work at all, but it did prompt me to learn that my fish tank pump works by having a diaphragm and two check valves, (its here if your interested)

3. Candle power, I wish this one worked - a candle powered bubble organ would be too good, I could stop right there.

There is a tube under water that has a tiny hole in the top, so small that water tension won't allow the water to fall through. Then there is a candle underneath, heating the air so that it really wants to rise. It should then escape out through the hole and bubble. The reality is that it doesn't, and even if it did it would be pitiful.

But we tried!

4. Inner tubes. Inner tubes are easy to find, so I figured I'd pump one up and stick a hole in it. A tiny hole worked and would have blown bubbles for an hour or so, but it was very quiet.

A big hole sounded great, but lasted for maybe 20 seconds.

So I'm back to fish tank pumps because they are loud and last indefinitely, but I only have one...

Does anyone have any ideas how I can get some for free or any other ideas for making cheap pumps?

CHARCOT MARIE TOOTH

Invisible condition

For a long time, not only did I not think of myself as having a disability, I didn't know I had one. In fact I still struggle to even think of my condition that way, but given that I have just applied for a disabled parking permit, perhaps I should consider it.

I want to write a little about the strange balance of having a disability that is not really visible.

Many people (although due to this project it is a lot less) are unaware that I have CMT. On the surface that doesn't seem like a bad thing - that means to them I'm normal, right?

The problem is that there are many little day to day issues that are governed by my condition, that without disclosing my reason for acting a certain way, make me appear to be someone I'm not. I'm not at all shy about telling people I have CMT, but there will always be people that don't know and sometimes I can't be bothered to explain it.

This seems pretty abstract, but a really simple example of this is as follows: I ride a bike. I love it as it is fun and gives me freedom. However, I struggle to carry it up and down stairs when I arrive somewhere, so I take the elevator even just one floor. I feel that to the uninformed observer, that makes me somewhat of a contradiction; energetic enough to ride around, too lazy to walk up the stairs. Silly as this thought is, it's enough to make me sometimes navigate the stairs if I arrive at the same time as someone else, which doesn't do me any favors.

On top of this, the effect of CMT (for me, this is all personal - I'm no doctor) seems to be fairly variable. One day I can take a long walk around town, another I have trouble walking around the house. So that second day, in comparison to the first, I seem pretty lazy not wanting to get a glass of water from the kitchen.

Another classic case for me is appearing drunk when I'm not. I like to go out to bars, clubs etc. and do what you do at those places. The problem is that moving around the crowded room, I'm always the guy that stumbles, trips and spills drinks due to my lack of balance and ankle strength. I have no problem with being drunk if I am, but it is annoying to appear to be something you're not. This has become less of an issue with the purchase of some new fancy AFO's (Ankle Foot Orthotics), but they too have limitations particularly when it comes to dancing, and I do like to dance.

I've spent years perfecting a dance style that involves moving my body until I'm about to fall over, then saving my balance at the last second, crucially, in time to the music. The AFO's, with all their wonders of giving me new found stability, are messing with my dancing style!