Ten months on from “Does my Nose look Big in This?” It is time for an update. Some time after writing that missive I discovered a curious and liberating link between Public Transport and Non Invasive Ventilation, but there is a back-story to cover first.
Quite some time ago I asked an engineer friend to help me design and build a ‘carryall’ to go behind Bugger’s seat and hold the breathing machine and other electrical bits and pieces. We worked on it over a couple of months, and the result was terrific. It hangs from a rail behind the seat, pivoting so that when the chair tilts backwards the water in the humidifier doesn’t spill a drop. It has to fit in a small space, dictated by the width and travel of the chair’s rear wheels; and the final design and construction in lightweight aluminium is a credit to my friend’s ingenuity.
Ten months ago I added four small wheels so that I could roll the carryall from room to room to meet the growing need to use the machine during daylight hours. Nine and a half months ago I replaced and relocated all four wheels after they began to snap off going around corners. My engineering is not at the standard of my friend’s! But one problem remained: I was still tied to power points. As the use of the breathing machine gradually increased, so did the time I spent within a short radius of whichever power point the machine was plugged into. After a couple of years of relative freedom my mobility was once again under threat. The solution: a car fridge transformer with various switches, plugs, cables and no small amount of advice from our local electronics shop.
Then came a moment of exhilaration akin to discovering that you can fly! (Do you have that dream at night?) The first time I switched the breathing machine from 240 volts to 24 and rolled away from the power point was like unaided flight. I zipped around the house, inside and outside, did loops through the garage and the front gate; and even a lap of our dead end road in sheer elation. I was free! ……. until I remembered that people were going to see me. It’s one thing to master the technicalities; mastering one’s inhibition is hideously more difficult.
Here, then, is the strange link between Public Transport and NIV (Non Invasive Ventilation is the medical term for what I am using; leaving the patient to scrunch their eyes and try not think what ‘Invasive Ventilation’ might mean). Once I was powered up for travel I began to notice that each time I boarded a bus there was a tiny lessening of my terror at being seen with a breathing mask. I think that a subtle change comes over people as they sit two-by-two in unreasonable proximity to complete strangers. Most passengers (other than the garrulous odd-bods who leap into the very front seat where they can lean half way across the aisle and discuss their personal life with the bus driver. In a loud voice. Why would you do that?) withdraw somehow; shrouding themselves in an invisible cloak of privacy, avoiding eye contact, assuming a concentrated, philosophical and distant expression that could not possibly be mistaken for interest in the intimacies being shared in the row behind. In that ‘safe’ environment I learned, very gradually, trip by trip over the months, to use a breathing mask in public. And then, very, very gradually I gained a modicum of confidence in front of family and friends. An process still evolving.
I was out on Friday and for the very first time braved exposure in the aisle of a supermarket. I had no option; and initially employed the technique of concentrated price-scanning to avoid finding out if anyone was staring at me. I turned into the next isle and coming the other way was another “wheelie” being pushed along by a carer. She was a middle aged woman with significant disability. As we were about to pass in the isle she looked me straight in the mask,
“God, you look lovely!” she said.
“Thank you”, I said, and smiled.
Everyone has their place at large in our world, and it’s a poorer world with the least one missing.