Positive pressure ventilation is a form of mechanical breathing used when one’s body decides it is no longer going to breathe on its own. This can occur with conditions such as motor neurone disease, muscular dystrophy and an assortment of other, often rare and/or unknown, neurological conditions. This is distinct from people who use other forms of breathing intervention for, for example, sleep apnoea created by snoring. Requiring ventilation on a long-term basis is not by any means a common occurrence in the community, and the manner by which it is implemented (that is, mask or tracheostomy), depends entirely on the nature and severity of one’s condition. In addition, some people require 24 hour ventilation, others nocturnal when the muscles of the diaphragm do not respond to the prompting of the autonomic nervous system to keep working during deep (REM) sleep. My condition enabled me an introduction to ventilation via nasal mask while I was sleeping.

However, late in May 1998, I had a tracheostomy. The decision to undergo this procedure was a conscious choice because nasal ventilation had become extraordinarily problematic. I had tried what seemed like every masking system known to humankind since I began using a ventilator in October 1995, even coming up with some of my own modifications (much to the frustration of staff with years of experience in this area).

Still, all this was to no avail as my nose became increasingly intolerant of having a foreign, at times indecently uncomfortable (actually, on second thoughts, most times indecently uncomfortable) object where it did not belong. So my nose rebelled. It gave up the struggle of having to cope with barely controllable sores on a daily basis and allowed itself to be pumelled. The night I was admitted to the Bowen Centre at the Austin and Repatriation Medical Centre to finally face my fate, I looked (and felt) like I had been beaten up. Without nocturnal ventilation, which my nose apparently would no longer permit, I was running the risk of having my breath taken away in a not so romantic manner.

I say “finally face my fate” because this tracheostomy thing was something with which I had first been confronted almost 18 months beforehand. The additional complication of bronchiectesis of my left lung, rendering my lung virtually useless except for producing constant and somewhat debilitating secretions and chest infections, prompted the medical staff to suggest tracheostomy as a way of managing my worsening ventilation and lung condition. The whole idea was totally abhorrent to me. There was no way I was even going to consider it as an option. Not that I was any stranger to progression. My major condition of muscular dystrophy had seen to that. Having been diagnosed with this as a 7 year old and now being 30-something, I had already experienced many facets of advancement of my muscle weakness throughout this time, including the prospect of death on occasion. In fact, when asleep during the many months before ventilation, I wonder how many deaths I had died, since my breathing was stopping for up to 5 minutes at a time several times a night so I eventually discovered. I wondered why I was so exhausted, still working and trying to do a Masters degree.

The condition has indeed taken me on journeys that I guess statistically not too many people get the opportunity to encounter. I cannot say, though, that I have ever been prepared for what those journeys have delivered to me because there has never been a prognosis, indeed when first it was diagnosed the condition was thought to remain static, affecting only the muscles in my face and shoulders. Celtic composer and song writer Loreena McKennitt reflects in the introduction of her album Book of Secrets, that it is the journey not the destination which is a ‘source of wonder’ in life. She speculates that ultimately a major step ‘on our journey is the one in which we throw away the map’. I tend to agree with this philosophy and it is one like this based on a theory of risk-taking that encouraged me to jump in and go ahead with the procedure.

Despite this, it would be too easy to say that McKennitt’s belief was all that got me there and it certainly did not always come to mind as I travelled through what was expected to be a relatively straight forward process – in and out of hospital within a month, continuance of nocturnal ventilation only, speech, no other particular complications. Not…! Naturally, the outcome of the process I was not to know, quite possibly just as well. Quite possibly, it would not have mattered whichever way it turned out.

The struggle I endured in making the decision to go ahead and have the tracheostomy involved walking down roads that were treacherous to say the least. Having a tube inserted in my neck, my throat cut, under circumstances like this (as opposed to undergoing the procedure in an emergency when the choice is taken away), threatened many aspects of my life and at the same time forced me to face my own mortality. The decision to do this, therefore, is not like making a decision to have your toenails cut.

A tracheostomy meant for me potential life extension but it also meant giving up the life I had made for myself because it meant looking straight into the eye of the place where my condition had brought me and accepting the dependent state that my body had afforded me. My belief system told me that dependency was not necessarily a good thing despite the fact that I had relied on attendant carers for several years already. In the eyes of the world, living “independently” as a person with a disability was a sign of strength and the implications of tracheostomy would, I felt, send me hurtling backwards fast. More specifically, I was bound to lose my space in the world and, even more fundamentally to me, my control of that space.

Issues of body image and how my being as a woman would be threatened also haunted me. I plainly did not want to parade around with a tube sticking out of my throat. I did not know how people would react. Being single, I did not know how men would react. There was already enough to contend with.

I have always believed that one’s value as human being is not determined by a socially defined structure of physical perfection nor that the ethic of physically being able “to do” makes one’s life more important than one who is not able to do. I needed to apply this to my own life. So in the end, when it came to the crunch and it was time to decide (the bottom line being between life and death), though these physical, bodily concerns were driving me to sleep, to reject the tracheostomy, something inside me, my spirit or I know not what, would not have a bar of it. I still had life to live. And with the tracheostomy, it is an interesting experience. And if, by facing the tracheostomy head on, I have grown in some small way as a person, then I count myself as certainly blessed.