Some dark thoughts

The pillow came down over the sleeping boy's face.

His father held the pillow firmly as the child struggled and writhed. Standing over them, the boy's mother gasped and sobbed.

At long last, the little child lay still. He was finally free.

Free from a life of suffering and despair.

Code of Law

The scene I just described is from my second-favourite television drama after Tanglin. It is also aired on Channel 5, and is called Code of Law.

It might look like a murder, but what happened in the story was that the boy had Batten disease, and the parents had decided to conduct a mercy killing as the prognosis for patients with that illness is grim.

Watching the storyline unfold made me feel a bit uncomfortable. Not unpleasantly so, that I was compelled to stop watching. But it did get me thinking about my own life. And death.

A swipe at Creationists

Whoever believes that we human beings were created by some intelligent and sentient "thing" (like God or some sort of Creator) should have dysphagia happen to them.

Dysphagia refers to difficulties in swallowing. It can be caused by many things as the throat is a very complex area of the body, with many different muscles working together every time you swallow. If so much as one part goes wrong, the whole system breaks down, and dysphagia results.

It gets worse. Do you remember the anatomy you learned in school? The air passage leading to your lungs is in the same place as the food passage going to your stomach! That is why people choke and die.

If you still think that is intelligent design, then I am sorry to say that you are not intelligent.

Aspiration

To make matters even worse, food and drink are apparently attracted by some kind of magical force to our lungs. They dislike our stomachs with a passion. So each time you swallow, you are basically forcing the food or drink to go where it does not want to go. It will always try to go down your windpipe.

For people with dysphagia, food and drink do occasionally succeed in going into the windpipe. This is known as aspiration. Stupid, I know. Nobody aspires to aspirate, that is for sure.

What is the point of all this information, Jonathan?

It was not a very Good Friday for me this year. I woke up with a problem I had never encountered before.

Every time I initiated a swallow, I suddenly felt like air was spurting out of my nose. Sometimes, little shards of food would also shoot into the back of my nose before being brought back down into my throat by gravity.

This made it very difficult for me to get food down into my food passage. All the food just hung around in my throat.

Drinking was easier in terms of making the liquids go into the gullet, but more uncomfortable because liquids are by nature quite flow-y so they loved to go up my nose a lot more than the food did.

I was a little disturbed by this development. It was causing mealtimes to become rather stressful and unpleasant. So I asked Dr Google to diagnose me.

Within minutes, I was reading Comprehensive Management of Swallowing Disorders (2nd edition) by Carrau, Murry, and Howell (2016). This enlightening textbook revealed that I was suffering from nasal regurgitation caused by velopharyngeal incompetence, and I could be treated with a palatal adhesion or pharyngeal flap surgery. In plain English, the piece of tissue that is supposed to seal off my nose from my throat when I swallow is weak, so food, drink, and air all rush through the gap and into my nose. The surgery would take extra tissue from another part of the throat and sew it onto the weak area, making it easier for a tight seal to be formed between nose and throat.

I also discovered another issue which I think I have had for a while, called cricopharyngeal achalasia, which has resulted in the formation of a Zenker's diverticulum. Basically, the muscles at the top of my oesophagus are not working properly and a pouch has formed just inside the opening of the tube, collecting some of the stuff I swallow. That explains why I occasionally have random bits of undigested food appearing in my mouth (or on my bed at night)! This condition is also treatable, with a cricopharyngeal myotomy.

Unfortunately, Dr Google has no hands, so I cannot ask him to conduct surgery on me. I had to seek help from a real doctor. So I went to see the otolaryngologist at KK Hospital, where I have my other specialist doctors too.

I should not have bothered. The professor, the head of the department, that saw me the first time had the bedside manner of OJ Simpson. He was rude, brusque, crass, and had no interest in understanding my concerns. And I was shocked at how insensitive he was when we had the following exchange...

Him: How old are you?

Me: 20

Him: You are very lucky to be out and about. A lot of my other patients with SMA who are around your age are just lying flat in bed, unable to do anything else.

I have never written an expletive in my blog before, but putting that conversation down in black-and-white makes me so angry that I will break with tradition by saying this: What the fuck is wrong with this guy?!

As a medical professional, such a statement is totally uncalled for and completely unacceptable. And this guy is the department head! Ridiculous.

After the first appointment, the guy asked me to go back for an assessment known as FEES (flexible endoscopic evaluation for swallowing). So I went back for that a few days later, and it was as much of a clusterf*** (I have cooled down enough to put asterisks in the relevant positions) as the consultation with the department head.

A flexible endoscope is a camera on the end of a thin wire. During a FEES test, a doctor holds the wire and pushes it into a patient's nose until the camera travels all the way into the throat area. Then a speech therapist gives the patient food and drink, and observes the movement of the throat structures on the live video stream.

The doctor who was assigned to holding my wire was some junior one, and boy was she a bitch! She kept making those tutting noises like you would to a recalcitrant child, ostensibly because what she was seeing on the video monitor distressed her greatly. But she never once explained to me what the problem was. In fact, she behaved as if I was not present in the room.

After I had wrestled down a bit of food and drink, the bitch took out the camera. She turned to the speech therapists (there were three of them, and I have no idea why) and they all huddled together like penguins in a snowstorm. I heard them whispering, because I am not deaf. "QOL?" "QOL." Heads bobbed up and down in unanimous agreement. My god, that was a circlejerk if I have ever seen one.

One of the speech therapists turned to face me and said (to be clear, this is a paraphrase and not a direct quote) that in their esteemed opinion, I should eat my meals through a rubber hose inserted into my nose (the technical term is nasogastric tube) because eating by mouth exposes me to the dangers of aspiration. Supposedly if I aspirate too much, bacteria will feast on all the yummy food lying around in my lungs, giving me infections. (Would you like some hors d'oeuvres, Mr Leptospira?)

Wait, what? Are we just going to ignore the fact that food is going up into my nose when I eat? That was the problem I presented at the clinic with in the first place! Oh, right. That problem is easily solved by feeding me down my nose instead.

Essentially, they derailed the whole issue. Instead of addressing the problem with my nose and throat, they just wanted to find any excuse to intubate me. And by the way, QOL stands for quality of life. How robbing me of my freedom to eat and drink by mouth is supposed to enhance my QOL is beyond my ken. Not being able to eat and drink will break my spirit and send me into a downward spiral from which I will never recover.

I suspect that the reason they failed to target my problem specifically is that they are afraid. They are lily-livered cowards who are not fit to lick the shoes of real medical practitioners. They have never seen an SMA person with this problem and have never experienced treating one using surgery. So they avoid the issue entirely by recommending the most drastic solution available to them, one that would allow them to dodge all possible future difficulties with eating that I may pose to them.

After all, one can never have problems with swallowing if one never swallows.

Source: memegenerator.net

But because they are egotistical bastards, they will never admit to their shortcomings. So they trot out some lame-ass excuse like "Surgery comes with inherent risks." No shit, Sherlock! But if your balls shrink at the very thought of doing surgery on me, I shudder to imagine their response if I get appendicitis (a random event that happens to the best of us). They will probably just leave me to lie there in agony.

This entire fiasco has made me lose faith in almost all the medical professionals in Singapore (trust me, I have dealt with enough of them to form my conclusion). In general, they are a bunch of incompetent yet arrogant fools. The only one I still trust fully and will put my life in the hands of, is Professor Kevin Lim Boon Leong (I have used his real name because this is a positive mention. I do not believe in naming and shaming, which is why I did not name the lousy doctors earlier. Also, I have no wish to be sued.), an orthopaedic surgeon and the best damn thing to come out of KK Hospital in all my years as a patient there. I gave him a very expensive Hamley's teddy bear, bought using my own meagre cash stash, for good reason. Not only is he a skilled surgeon, he has impeccable bedside manner and always treats me the way doctors should treat their patients: courteous and friendly.

What now?

You might be wondering if my dysphagia was ever adequately addressed. The answer is no, and I do not expect it to change in the future. So I have decided to cut off all contact with those useless toga-lifters who want to put a rubber hose in my nose, and find ways of coping with my problems on my own.

Full circle

I started this post by talking about a mercy killing. I have no desire to be killed, for mercy or otherwise, but my point is that I know my disease is terminal, just like the Batten disease the boy in the story had is. It will take away one thing after another from me until it succeeds in claiming the ultimate prize: my life. I am ready to go anytime. In fact, I embrace it. Better to go now, while I still have more or less a normal existence and retain most of my bodily functions, than to die lying on a bed in a pool of my own excrement, having not seen anything outside the walls of my room for years.

And this incident has made me even more determined than ever to enjoy my every day. I will never know when another part of my body will give up on me, so I choose to do whatever I want now, while I still can. Like drinking Pepsi, my favourite thing in the whole wide world. I have one every evening now, because who knows how much longer I will be able to consume them? Not like I will live long enough to get diabetes anyway. Those long-term concerns do not apply to me!

Having a shortened lifespan does have its privileges...