Thankfully, it wasn’t long before I found my voice. After a few weeks of slowly strengthening my breathing doing longer and longer stints with the ventilator turned off, there was talk of seeing if I would tolerate having the cuff down. So rather than my lungs having to suck air through my neck hole, the neck hole would be plugged off and I would breathe through my nose and mouth, just as God intended. Although you might think there’s not much difference, the distance from my mouth to my lungs is longer than from my neck to my lungs; this makes the task much harder, like having to suck through a longer straw- and in the state I was in at the time, that extra distance turned a molehill into a mountain. So instead, there’s a thing called a passy muir or speaking valve. It’s a cap for the tracheostomy with a valve that allowed me to breathe into my neck (easier) but breathe out through my mouth; and if I could breathe out my mouth, I could talk. I actually still have my speaking valve today, as gross as that is.
Now, there’s one last bit of boring neck tube science to cover. Remember those secretions I’ve talked about before? So, they’re still hanging around, like youths at 11pm. With the cuff up any secretions from above will slowly accumulate, flow down the trachea, and pool on top of the tracheostomy. Not that much fluid forms above the cuff, and while the cuff is inflated it’s no problem; it can’t go anywhere. However, when the cuff was deflated to allow me to speak that pool of secretions just became a waterfall; without anything to hold the gunk back it would all fall at once. Have you ever tried to snort a booger rather than pick your nose, to be rewarded (or punished) with a bit of snot breaking the sound barrier as it zooms up your nose and back down your throat? If you haven’t, you’re missing out on absolutely nothing. If you have, this was quite similar; just as parking your car in the driveway is similar to piling an articulated lorry through your house.
The result was I would cough and retch really hard for maybe 10 minutes and then I would be in the clear. I remember how distressed it made my visitors; I was used to coughing and retching and respiratory distress, but normally it was with the privacy of closed curtains and a physio or a nurse- the people around me were usually shielded from the worst of that. Now if they wanted to speak to me -and I to them- we had to do this uncomfortable dance, with me sounding like I was trying to invert my lungs and them attempting to act like this was perfectly normal.
So finally, I could talk. I actually can’t remember what my first words were, but they were probably pretty caustic and not very inspirational. I had forgotten what I sounded like. Before the cuff came down for the first time there were jokes with the nurses about how they expected me to sound; posh or not, baritone or soprano. I think the first people I spoke to were my parents, but it might have been Izzy. I remember how oddly normal the conversations were, like we were sitting on the sofa at home or had met up for coffee; on a little island and the sea was raging. I mean, what do you say? “Hi, my life is ruined- so how’s work been?” All of a sudden, I didn’t have to mouth and spell things out with a whiteboard full of letters, but I didn’t have the words. I don’t think anyone else did either. Maybe I was on the island by myself. I had spent so many days stuck in my head, so many conversations had been stilted or killed by my inability to speak, so much frustration and anguish and madness, but I couldn’t get it out. I had so many voices in my head, but none in my mouth.
Talking was physically really hard. I had one muscle to do all the work and it wasn’t in the best shape: the first time I think I managed half an hour. Once I had the freedom of being able to express myself and be understood, even if it was just banal conversation, I loathed becoming tired and having to go back to the ventilator. The doctors had to limit my time with the speaking valve on so that I didn’t exhaust myself and ruin my progress. But now the carrot on the end of the stick was so much sweeter; every minute of progress breathing solo translated to more strength and therefore, more talking. I can’t really describe how transformative that first step was; being even slightly sat up, seeing the walls, looking people in the eye and speaking to them- it turned me from an amoeba to a man. Just having the air flowing through my nose and mouth meant my sense of taste was resuscitated. My life had gone from black-and-white to sepia tone, even if I was too confused to express how I felt.
Flashing forward to today; the hole in my neck has healed (spoilers) and I can talk for as long as I like- you can ask the people around me if that’s a good or a bad thing. I really wasn’t sure what to title this post- calling it something like tracheostomy would be really dull and not capture what it’s about. When rereading this post, I realised that I’d used the word neck a whopping 14 times and this, and everything else, all comes back to my neck in the end. The photo is the rear scar from my initial surgery; sometimes I get mad that it healed so well- it doesn’t do the severity of the injury justice, but at least it looks pretty.
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