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It’s the small things that add up to the kind of life one leads, right?

For example, this:

When you have Pulmonary Hypertension, the simple act of retreiving something from the floor is like holding your breath to dive underwater.

Bending over squeezes your stomach and cuts off your oxygen. You invariably come up gasping for breath. Sometimes you don’t even manage to pick up whatever thing you had dropped, so, after catching your breath, back under the water you go.

It feels a bit dangerous. There’s the worry that if you stay down there too long, you won’t be able to come back up.

It makes me wish that we all lived in zero gravity, so that everything would simply float around in the air. Or that there was an invisible force-field at about waist height that would send everything spinning back up into the air for me to catch. Or,  even better,  that I had long, stretchy, Inspector Gadget arms.

I was going to write a post about the small, yet significant, discomforts we are willing to put up with, and how these vary in person to person. For example, I point blank refuse to live or work in a building with stairs, while other PH sufferers I know seem resigned to walking up flights of stairs in their homes and workplaces. And on the other side of it, I spend my life doing walk, walk, walk, stop. Catch breath, in shopping malls, while others simply opt for a mobility scooter, or make their spouse go out for the milk and bread.

However, during the er, ‘artistic process’ of illustrating this post (ahem), I happened to look up images of Inspector Gadget on google. And discovered this:

Inspector Gadget is way cool! For one thing, he has all these things in his hat – a helicopter flying machine, a magnifying glass, a flashy red police light, and a zillion other gizmos. He also has a puffy jacket, and the aforementioned excellent long, bendy, robot arms.

These things made me think of something I read about while studying Gender Studies at the University of Tasmania four years ago.


Oh yes.

What is a cyborg, you ask?

According to some definitions a cyborg is someone whose life is restored by an intervention of technology. This includes devices such as cochlear implants, and artificial hearts. Some definitions would stretch to encompass Flolan and other intravenous PH drugs.

Some definitions of cyborb include all technological interventions on the body. If you’ve ever had a flu shot, worn contact lenses, or taken a Panadol to cure a headache – you’re a cyborg.

The idea of the cyborg is useful for revealing the interplay of humanity and technology. Here, these things are not divided by essentialist binaries of man/machine, but are one and the same. As Donna Harraway in ‘The Cyborb Manifesto’  writes, “We are all chimeras, theorized and fabricated hybrids of machine and organism; in short, we are cyborgs”

Strangely, these ideas help me feel better about being so reliant on medical technology to get through life in one piece.

Diuretics so that I can walk around without feeling nauseated or eventually dying of heart failure. Tracleer to slow the gradual creep of this disease throughout my lungs. Pottasium to keep my heart squeezing blood at the right pace. The roar of my oxygen concentrator echoing in the dark night-time spaces of our house, and the way that sometimes I wake wrapped in its strangling, serpantine, coils.

And I remember discovering at some point that one of my surgeries had involved leaving a plastic banding device on a valve in my heart. At the time, I found the idea of having a piece of plastic in my chest rather shocking- something man-made, something artificial, something fake. I wondered, ‘does this mean I am fake? Am I not real?’

Then, when I started to see a Pulmonary Hypertension specialist, I was expected to gratefully take several types of pharmaceutical drugs; an act that seemed at odds with my then hippy, back-to-nature, wholefoods, lifestyle.  I was suspicious of these nasty chemically-looking substances in their scary bottles with warnings on the labels such as, ‘taking when pregnant can cause birth defects’.

What would these drugs do to me? How would they work? What side effects would they have? More importantly, how would theyalter me?

I still ponder my dependence on medical technology. If I was stranded on a desert island without my pills and 02 machine, how long would I last? If I had been born in the middle ages, how old would I have been before I died? Six days, or six months?

Pointless thoughts really. Everyone’s lives, healthy, or sick, are interwoven with science and technology. Mobile phones, e-mail, social media, music, microwaves, electric ovens, gas ovens, cars, roads, horse-drawn carriages, the use of fire to food up. Anyone who has ever taken a pill for anything. A fizzle of synthetic compounds interacting with bodily processes, and hey-presto: you’re a cyborg.

Now, I’m grateful for these drugs and my 02 machine. I’m grateful to live at a time and in a society where these things not only exist, but are available in a social security system where I don’t have to pay too much for them.

Of-course, the place where the cyborg definition in relation to disability doesn’t quite work, is that these things don’t actuallyrestore our lives. I take techno-whizardry drugs and use a machine to breathe while sleeping, and my life still sucks to a large extent. And perhaps also, there are people who are comfortable in their bodies the way they are, and would reject the notion that technology could ‘fix’ what is ‘wrong’ with them.

So how did I get onto the whole ‘cyborb’ topic anyway? Oh yes, I was talking about ways to improve my life. I’m getting tired of, ‘walk, walk, walk, stop. Catch breath.’

I’m thinking of purchasing an electric scooter. I am, however, a bit worried that since sometimes my only exercise consists of schlepping it around the local mall when I run out of milk, using an electric scooter migh turn any scant muscle-mass I possess into blubbering, melting, jelly

(Truthfully, I’m not that worried. I just wanted to add another Paint ‘masterpiece’. Ahem.)


4 responses »

  1. OMG I ponder the exact same things. Unfortunately living alone means I have to force myself to pick things up off the floor (catch my breath) and then keep going. I also force myself to walk and drag my O2 trolley even though I have a wheelchair in my garage.
    A serious question though – is pulmonary rehab class ever recommended for PH as a way of keeping fit?

    • Yes, Pulmonary Rehab is recommended for PH. After looking around for a while, I found a place, and am about to start next week. I don’t know what results I can expect, but I’m hoping for some improvement. Have you ever tried it?

      • Yes I’ve been going along since 2004. It’s really helpful. There’s no way I’d be motivated enough to exercise otherwise, and it’s quite handy to keep a check on your fitness levels.

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