Chapter 6: Post Sniff Test

If I was an actor in a movie and I needed to convincingly convey my horror, I would conjure the image in my mind of being buried alive. This is called Method Acting. Or if I wish to experience anxiety for real, all I’d have to do is dwell on the possibility of it happening. I would use my imaginative mind to conjure the images. I have the ability to absorb myself into the experience. I could easily work my way up to a panic attack if I put my mind to it. But I do have better things to do.

I’d love to be one of those devil-may-care individuals who even toy with the idea of being buried alive as a point of amusement. I’d love to slap my thighs and laugh out loud when the prospect of being buried alive arises. For example, let’s go down the deep dark ever-narrowing tunnel until we get stuck. Yeah, let’s do that. But alas, it makes my skin creep.

In 1984, O’Brien the torturer discovers that Winston is afraid of rats. He is able to break Winston by strapping a cage of rats to his face. For me, it’s being buried alive or the tight tunnel with no wriggle room and no air with no hope of escape. I’d crack. I’d tell you anything to get out of that situation.

So, here I am with half my diaphragm to breathe with. Half my left lung is squashed by my pancreas and colon, and there is historical emphysema in the right top lobe. For the last two or so years I’ve been fatigued and brain-fogged, I presume, partly at least, due to oxygen deprivation.

Then it dawns on me. What if the right side of my diaphragm just packs it in one day? I wouldn’t see it coming. I’d have no clue about when, where, or how. That’s how it happened with my left diaphragm. If it happened on my right side, effectively I’d be buried alive, or stuck down a tight dark tunnel without air to breathe.

If the right side failed, I guess, I might have an hour to live if I didn’t get into an iron lung soon enough. Not knowing the cause of my left diaphragm failure seems to me to be essential information for my survival and peace of mind.

In my last appointment, the GP ordered an ultrasound scan on my liver and a sniff test for my left diaphragm. Two weeks later I returned for the results.

He’s not happy. I can tell as I walk into the room. He wants to get on with it. He has no intention of allowing me to settle. He just tells me as my bum hits the seat, “It’s not a hernia, it’s an inactive phrenic nerve.” I failed the sniff test. There is no mention of the liver scan, so I presume that it’s not important.

The sniff test reveals that my left diaphragm is not engaging. This means that my left diaphragm has no muscle tone, which explains why my colon and pancreas have pushed up into my left lung cavity. This means that I’m not breathing on the left side, and the left lung is significantly reduced in volume, maybe by fifty percent.

I am once again slapped across the face with a damp tram ticket. In other words, there is something significant in this news. I can feel it. But what does it mean? The realisations will come in time.

At this point, I’m overlooking the GP’s grumpy demeanour. I just put it down to his personality. In other words, he’s just one grumpy dude, and it has nothing to do with me. But I’m getting mixed messages from him. On one hand, he seems to be saying that there’s nothing that can be done about my inactive left diaphragm. Then, on the other hand, he says that we need to explore a bit further to look for possible causes. So, he orders a CT scan of my neck, but his heart isn’t in it. He just doesn’t seem to have that spark of excitement that he had when he first discovered the problem. Back then, he said that if it’s a hernia, then it’s easily fixed. Well, it’s not a hernia. If I’m reading him correctly, I’d say that he thinks that I’m done and dusted; we’ve hit the wall, and yet the problem still exists.

When I got home, I immediately booked the next available appointment for a CT scan on my neck. When I arrived for the scan, I discovered that it’s a simple process. I lie down on the tray that slides me in and out of the huge donut, which is the CT scanning device. I get a cannula in my arm. Just before the machine cranks up, I’m injected with the contrast substance through the cannula. It gives me a pleasant transient warm fuzzy feeling. For a scan of the neck, I am required to make a stupid gurgling noise with my throat as the tray carries me through the donut.

The CT scan of my neck is to see if anything is pressing on or damaging the phrenic nerve, which runs from the neck to the chest to control the diaphragm. The nerve starts around the C3-C5 area of the spine, so problems in that area like swelling, injury, or a growth could stop it from working properly. The CT scan should reveal these anomalies if they exist. The CT scan of my chest revealed no issues, so what’s in my neck?

I returned to the GP to learn about the CT scan results. Again, he’s in a rush to get me out the door before I’ve sat down. As it turns out, there are no visible anomalies in my neck. This appointment seems like a discussion about nothing. The GP is curt and impatient with me. My agenda is purely to get to the bottom of the breathing issue. A revelation from the latest damp tram ticket slap is that I have a breathing problem. But to the GP, this all seems like a waste of time. It seems that there is nothing that can be done. He tells me that we need to hold off with the appointments for a while. “Give it a rest,” was what he said. Hang on, does he think that I’m stalking him or something?

I’m not really on board with the GP’s estimation of the problem’s lack of urgency. I desperately want to keep the conversation going on this topic. He, on the other hand, seems to deny that I have a breathing problem. I suppose that he takes my physical presence and the fact that I’m able to stand up as proof that I don’t have a breathing problem. I suppose that if I was dead on the floor from suffocation, then he would concede that I have, or at least had, a breathing problem.

Over the week, it dawned on me. This is my damp tram ticket revelation. The big question is this: if it happened on the left side, what’s stopping it from happening on the right side? I see this as a likely and reasonable question. This is not hysteria. This is not dramatization. It is a simple question where the odds are not in my favour. For example, when my diaphragm was fully functioning, I had a fifty-fifty chance of catastrophic failure. I’ve had that chance. Now I face a one hundred percent chance of catastrophic failure. I have no redundancy in the system to fall back on. I don’t have a spare diaphragm.

I press the GP for a next step. Our conversation is getting tense. He seems to be prevaricating. He gradually becomes increasingly blunt and more didactic. My concerns are brushed aside. The vaguer he becomes on the subject, the more I push back. Yes, I did draw a long bow when I put it out there that we could explore outside the box. Being dyslexic, I’m a bit of an outside-the-box sort of guy anyway. But I don’t think that the GP is prepared to step over any line. I begin to see him as someone who has a narrow bandwidth for problem-solving. And of course, I get that sense of déjà vu, it’s like as if I’ve been here before.

He is at a loss to think of what more could be done. He concedes that an MRI of my brain will show any damage, growth, inflammation, or obstruction that could affect the phrenic nerve. He gives me the MRI referral and tells me that I can do it or not. He seems not at all positive or encouraging; if anything, he seems discouraging. My naturally paranoid mind wants to know if he is placating my anxiety or does he know for sure that the MRI is a waste of time? I conclude that both options most likely apply here. I take the referral with a meek grin.

I took the MRI referral home. I did not phone for the first available appointment. I cooled my heels on this for a couple of weeks. The pros and cons of having the MRI floated around in the background of my mind over that time.

I had to weigh up the two sides of this apparent binary choice. Will I, or won’t I? The GP thinks that it’s a waste of time versus the possibility of an answer. It seemed at first that the outcome would be one or the other, a waste of time or it will produce answers. So, if the MRI does not provide an answer, then it was a waste of time. Another revelation hits. A negative result is not a waste of time. A negative result means that we can now stop looking for swelling, injury, or a growth as the reason for the phrenic nerve failure. A negative MRI result means that we can now move on to explore all the possible causes that do not show up on x-rays, CT scans, or MRIs.

To a degree, I’m fascinated by an MRI of my brain. I’d love to have a peek inside. Also, I thought, what if I do have a cyst on my pituitary gland? It would be a handy thing to know, given my pissing problems. But clearly, I need to get it done so that I can move on to look for other causes that go beyond x-rays and scans.

The MRI experience is different to a CT scan. The equipment looks similar. There is a big donut and a tray that slides you in. There is, however, no contrast material injected into me; and when I’m on the tray, there is no sliding movement. My head is just aligned with the interior of the donut and I don’t move from there. I’m motionless for the duration. It takes about fifteen minutes. I’m given a headset to wear that broadcasts the local commercial radio station. For the duration, I get ads, three pop songs, some DJ banter, and a joke. But I didn’t get the punchline of the joke because the MRI machine made a God-awful noise just as it was delivered. One thing about an MRI experience that’s different to a CT scan is the noise. The operator tells me that there are quieter MRI machines, but they take twice as long to do the job.

About a week later, I received an automated SMS from the GP’s practice. It said that the GP has reviewed my MRI results and it shows a “normal study.” I did have an appointment booked in advance to discuss the MRI. But this text tells me that the result is negative, nothing, zilch. So, I cancel the appointment with plenty of notice. I can’t see the point of going through one of those awkward appointments again where there’s nothing to talk about.

From the GP’s point of view, there is nothing to talk about. But quite clearly, I have plenty to talk about, but not with that GP. The problem still exists. The GP is denying my problem, in spite of the facts. His diagnostic tools, the x-ray, CT scan, and ultrasound scans, have defined the problem. That’s good, but there is now the next step, which is to find the cause. Then the step after that would be to either fix it or at least try to prevent it from happening on the right side. In my simple mind, this is the way to proceed. But then I’m not a medical doctor, so what would I know about my health and my breathing requirements?

The GP’s text message should have said, “Nothing in the MRI to worry about. You’re welcome to make an appointment at your earliest convenience to discuss further options.”

Yes, by golly, I’d be there to discuss further options beyond x-rays, CT, ultrasound, and MRI scans to look for an answer. Now I can look for another GP who is willing to explore beyond diagnostic imaging. For example, Google tells me that there are at least three likely diagnoses. Try these possibilities: neuralgic amyotrophy, post-viral isolated neuritis, and shingles. In simple terms, these diagnoses are about autoimmune responses, post-viral or vaccination responses, or chickenpox. Another possible cause would be a subtle traction injury in the C3-C5 section of the neck. Surely the search is not over.

Well, how wrong can I be? The answer is, very wrong. Because of the GP’s indolence, I’m forced to educate myself. I need to know. I need the information to settle my mind. My mind is one of those things that doesn’t stop until it reaches the end. I can suppress and tolerate not knowing for periods of time. I’m not constantly on the case. But ultimately, I must know. Still, I do reckon that I can tell when I’ve got it wrong.

The fact is, as I discovered, the cause of my “phrenic nerve palsy” is of no concern now, after all this time. This is crucial information. This information makes a mockery of my naïve assumptions about diagnosis and treatment.

All the information I can wring out of ChatGPT and Google searches all point to the same result. It seems that no matter what the cause, there are two things. The first thing is that it doesn’t matter what the cause is unless it’s happening now right in front of you. For example, if it’s due to shingles, you’d need to be onto it right away so that the antivirals have a chance of working, before the damage is done (to the diaphragm). The second thing is that by now, with no spontaneous recovery so far, the diaphragm muscle has atrophied and died off. The information says that the longer it goes unnoticed, the less chance there is for any recovery.

So, as I discovered, it’s not just a matter of making the correct diagnosis and then fixing the problem. Apparently, the years have passed me by on that one. My current erstwhile GP estimated that it was a relatively recent development. This is because I told him that I’d been really going downhill over the last couple of years. So, the onset of the “phrenic nerve palsy” was presumed to be over two years ago. The GP said that he couldn’t find any historical chest x-rays, so we stuck with the two-year time frame. In other words, I think that the GP believes that the horse has bolted on any chance of recovery. So why didn’t he just tell me that? I guess that he was trying to communicate the information to me through his body language and grumpy demeanour.

Before I understood the death of my left diaphragm, in my naïve searching for answers, I was wondering who I should see. Should I see a neurologist, a lung specialist, or a diaphragm pacing systems specialist? So, I began to ring around finding people to talk to. For example, should I simply get a referral to see a local neurologist? So, I phoned the neurologist’s office. His receptionist gave me his email address. I wrote an email as follows…

The neurologist replied:

So, after several months of searching, I find that everyone’s singing from the same song sheet. There is the current erstwhile GP, ChatGPT, Google, and now a neurologist all saying the same thing. What is more, the neurologist found an x-ray that shows the palsy is over six years old. So, the horse has well and truly bolted on a fix for my left diaphragm function. The cause of the diaphragm’s failure is utterly irrelevant at this point in time. Well, sit me down on a box of dynamite and light the fuse.

Really? Let this one sink in. I look at it and what do I see? This is worse than having a tooth pulled out, if you identify with the loss. Or, it’s like losing a leg. Maybe not as bad as losing a whole leg, or an arm and a leg, etc. But there is loss nevertheless. It takes a while to sink in and to become real.

The whole thing leaves me with a grimace, not a grin. I’m torn between the desire to make good with the time I have left versus the practical realities of no energy and brain fog. When I say, “the time I have left,” I’m referring to the rest of my life, which I estimate is anything from five to fifteen years, if things work out okay. Of course, I have no idea of when, where, or how. All I know is that I have to get the job done within that time frame.

So, where do I stand on my final achievement? Where does this news leave me in relation to heightening my senses and sharpening my wit? How does this news help me to live out the rest of my life with a focus on living?

Could you expect Winston in 1984 to go about his normal life with a cage of rats strapped to his face? Aside from the visual impairment with the cage obscuring his view, he’d be too absorbed in literally facing his greatest fear, the rats. How can you dry the dishes, as an example, whilst you have the constant compulsion to scream in horror? It would not be practical. Too many plates would get broken. I put it to you that you cannot live a normal life with a cage of rats strapped to your face.

My metaphorical cage of rats is to be buried alive. I don’t know if you can see into the depths of my soul with this personal insight, but if you could, you’d see deep-seated mistrust, or just downright paranoia. You, whoever you are, will negligently not notice that I’m still alive, but you will blithely bury me anyway, then I will become aware of your fuckwitted indolence, and then I’ll die, all because of you. It will be you who is to blame, and from the grave I will haunt you forever. Then everything goes black from there, and I can only say that this makes things worse, not better. Because, there I’ll be, in the blackness with no sound, no vision, no touch, nuttin, zilch. So, you scratch deeper into my soul and you find abandonment. All you can do is scream in horror or change the channel.

So clearly, to realise my final achievement, I need to remove the rat cage from my face. I can’t live my life, right up to my death, if I’m fretting about the horror of abandonment. To me, death is the ultimate abandonment. Death is a vacuum in a black hole, no sound, no voice, no sight, no feeling. But more so, death in the depth of my soul is the final injustice. It is something that is done to me. Like a diaphragm palsy on the left side, then one on the right side. Why wouldn’t it happen that way?

So, what would happen if I was to go into a small room and remove the rat cage from my face and place it on the table? Then I could leave the room. I could walk some distance from the room and remain aware of the small room that contains a cage of rats sitting on a table. As time passes and the distance between me and the room increases, I might find myself, every now and then, experiencing a reminder about the cage of rats in that room. I might smile to myself as the image of the cage containing rats just passes through my mind as I move on in my real-time life. I’m over here; the rats are over there. I can feel safe in the knowledge of the rats’ existence and in the fact that I do not even need to think about them. I’d really be desperate for things to do if I was to give those rats a second thought.

The point that I make here is that I can live with my abandonment issue without having to pay attention to it. In fact, the abandonment issue only comes to life if I pay it attention. I could put myself through the emotional wringer by venting on abandonment. But why would I do that? Everything I have to say about abandonment is theory. Like, theoretically it has something to do with the environment in which I grew up. Theoretically it will be the cause of anxiety and depression. Theoretically my life will be a series of disrupted relationships with blame and betrayal as the main themes. Theoretically I’d be oversexed, needy and clingy.

Ok, so I’m not going to deny my abandonment issues. Now that I know what they are, where they are, and how they work, I can understand the threat of abandonment. If I clear away the theory, I can clearly see abandonment as a threat. It is a threat of my perception. I have a conditioned response, if you like to think about it that way.

The thing is, all threats are a perception. If you’re standing in the middle of the road and you see the bus coming at you, you will immediately perceive the threat. Without that perception the laws of physics will take over and you’ll be dead.

So, there you are standing in the middle of a relationship and wherever you look you see abandonment. Consider that the perception of abandonment is not the issue. And the more you know about your abandonment the less of an issue it will be. The struggle with an abandonment issue is in the belief that the abandonment has something to do with the relationship. The relationship is the trigger for the threat of abandonment; you can acknowledge the threat without acting on it. Your abandonment can be like the cage of rats sitting on a table in a small room that is elsewhere. It exists and that is all you need to do about it. From that point on you can free yourself to participate in the relationship according to your actual needs.

I reckon that I’m there. I know about my abandonment issues. Sometimes the issue morphs into deprivation rather than abandonment. Deprivation is all about the thing I’m missing out on. But listen to what I’m saying. I’m speaking theoretically. In practical terms if I know that I’m responding with a negative emotion when my perceptions say threat, when in fact there is no actual threat to me, there is no truck ploughing through my lounge room, there is no actual happening, what I have is an apparent threat. I have learnt over the years to recognise the difference between an apparent threat and an actual threat.

For me it is the threat of suffocation. This is the trigger for my conditioning and beliefs around abandonment or deprivation. If my right diaphragm packs it in, I might have an hour to live. Is this true or false? Well, it’s obvious. It’s true. It’s a fundamental fact: if I can’t breathe, I’ll die. There’s no two ways about it. So, there’s my cage of rats.

I asked ChatGPT about the threat of my right diaphragm failing. In response, Chat came back with all this nonsense that involved statistical analysis, probability, causality, reason and logic. Chat was actually saying to me, “It will never happen.” Just telling me that invalidates my fear. In other words, Chat says that my fear is not necessary because the threat does not exist. I can always counter that logic with, “Well, there is no logical reason for the failure of my left side, so why would logic have anything to do with the failure of my right side? Stick that in your pipe, Chat.”

The only reason why all this matters is because our body responds to an apparent threat in pretty much the same way it responds to an actual threat. This is important information to have tucked away in the back of your head. The implication here is that when your emotions are heightened and stirred up, it could likely be due to a perceptual distortion. This applies to me as much as it applies to you.

So, I’ll unstrap the cage of rats and leave it on the table. I will not deny its existence but I will certainly leave it alone. I’m over here, it is over there. I have resolve because I understand. I can join the dots and see the picture. I will breathe right up until my death; there’s no doubt about that.