Daddy said it was a space shuttle...

Been there done that

at least once per year

since I was seven

Dad first told me

it was a space shuttle

I got excited-

A ride to the moon

Mommy drove me 

to visit the shuttle

clouds and animals-

tucans, tigers, monkeys-

covered walls and ceilings.

There it was in a room,

the big space shuttle.

I kept coming back

every single year-

used to put me to sleep

They pricked my hand

I used to cry, cry, cry

It used to have stickers

Lion King stickers, inside

It is just plain white, now.

I am older and I know

it is not a space shuttle

They still prick my hand

I learned to lay still

It's really hard to not-

wiggle, wiggle, wiggle

I still come back

every single year

It used to be very loud

but now the tube is silent.

I used to get a toy-

Now I just get a CD,

and schedule another.

Vestibular Research as a "lab-rat" for NF2

Total darkness

Chair moves left

Was that right or left

I think that went right

oh, definitely left

Lights come on-

then off, again.

Chair moved down

and down, again.

I know I can't say down-

too many times-

I'd go through the floor.

I think that was up.

Was that up or down

It is confusing

hard with no balance

Tilt to the right

Right, I think

Feeling weary now

Chair tilts to the left

Lights come back on.

I hear “start” and beep

I hear “respond” and beep

I have to decide

which button to press

I press the right

then press the left

Repeat hundreds of times

It was mentally exhausting... when I got back, I think I slept for 9 or 10 hours!

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 explanation...

I had an interesting experience on Thursday, I had two appointments and pre-op in Boston for my NF2 , but during the short time breaks before, after, and between each of those appointments and then some more on Friday, I participated in about eight hours of a vestibular research project at Massachusetts Eye and Ear Institute, that I had been asked to take part in. (They paid be a little compensation to do it, which was a nice bonus.) It was especially interesting because they had never done the test with a person with bilateral loss of balance nerves, nor a deaf person, for that matter. I had to sit in a strange looking big robot chair that moves on some tracks, in complete darkness, and then press either of two buttons to indicate which direction I perceived the chair motion having had made. My feet were on a platform below and moved in the same motion as the chair. It could move side to side, or up and down, or tilt right or left. Sometimes I could tell my feeling the direction my body moved, but other times I just had to press a button and guess! This task would be difficult for any person, but I think they were particularlly interested in working with me because they know I have no intact balance nerves, however do these things that I'm “not supposed to be able to do,” such as marathons, triathlons, etc.