Man on a mission

This video has been going around social media quite a bit lately. I couldn’t be bothered to figure out if this was real or one of these sentimental hoaxes, but I felt compelled to share it. It only takes 3 minutes to watch.

The clip was in line with a question I often asked – what does the mind remember, when one starts to forget? This man remembered one thing, even if he had needed quite a bit of help in other aspects of life.

And in my opinion, what you remember even when you’re losing your mind, must have once been very, very important…

Ride with Larry – the Movie

If you’ve joined me on my blogging journey, you probably know I don’t write about movies, or movie reviews.

But there is this one show for 2014 that I’ll like to mention: Ride with Larry – the Movie.
I’ve heard people complain about poor visual treatment, low budget production, etc.
What caught my attention, though, was the fact that this movie reminded me of the old man I’d met.

I have watched the trailer; there are elements I may not entirely agree with, but Larry’s message is clear. He tells of how people may give up their fight. He states his awareness of how this disease may take his life some day. But he continues to take the challenges.
That’s what many of us lack even in a good state of health. We avoid difficulties. We complain about tough times.

Start working on what matters, with a determination never before. Start today.

old lady and her friend

On the very same trip in the previous post, I met two elderly women on the train. Let’s call them Judy and Gertrude.

They were chatting softly in the corner seats of the carriage, Judy seemingly excited about the similarities between this foreign land and their country. She was on a trip away from home! Gertrude was nodding sleepily. As Judy ended her sentence, Gertrude responded. I glanced at them; it was then that I realised that she didn’t have her eyes closed – her left eye wasn’t well, and could not be opened. At the same time as she spoke, Judy who was seated on Gertrude’s left, turned to lean her left ear towards Gertrude. It didn’t take me long to note too, that Judy was hard of hearing in her right ear.

Something hit me at that moment, again. It wouldn’t have been easy for these two old friends to have made such a long flight out of their homes, given age and other impairments – but they did! And despite the difficulties, there was genuine interest and excitement in their quiet speech.

Yet myself – I am disinterested, uninspired and unmotivated.

What are we afraid of in taking risks?
What holds us back from making that first step?
And would we then wait till age catches up with us before we regret, or decide to take a chance?

I sit still at a desk with my laptop while I contemplate about questions I throw out with regards to freedom and travels – what an irony!

man on a journey

Having just returned from a multi-city trip, I was filled with inspiration and new perspectives to life. I climbed 509 stone steps to the top of a Cathedral; I walked over 430 steps to see a Buddhist monastery. And of all things that got me writing here, it wasn’t the view – it was a man I met on one excursion.

I stepped out of the Jade Emperor Hall, which took another 69 steps or so to get to after reaching the main monastery ground. A Caucasian man, breathing heavily, appeared at the steps. He was in his sixties, and had come alone. He held his camera  precariously as he took his last step and walked towards the Hall. For a moment I stopped and observed.

His movement was slow; his right hand was shaking vigorously, and he had a slight hunch as he made his way forward. He packed his point & shoot camera into his pocket and smiled briefly. Parkinson’s, I first noted. Then it came to me that there in the advanced stages of the disease, dementia might occur. It all hit me with a bunch of questions, and a strange surge of emotions brought me close to tears

His hands were shaking, but his determination wasn’t. He had walked so far up the hill to see this religious compound. What about the local people? How much has tradition died out in the country, that it has only become a place where foreigners visit?

Some day he might not remember, but his photos would give him an impression that he had been there; or maybe not. But he still chose to take a shot. See if before he could no longer. What about us – what about the rest of us who choose to sit and whine about wishing to do something, but never get down to it?

I watched him for awhile. He looked up at the religious statues, and I wondered what went through his mind. I quietly hoped that all would be well for him, and took my leave.

This man on a journey got me to realise that if there was so much I wished to do, I had to do it without procrastination. While we all have this resolve, we don’t seem to keep it in mind long enough. Let’s try…

are we missing the point? – Medical vs patient care

As society becomes more educated and technology advances, I think we’ve missed the original meaning of “patient care”.

This thought arose as I read “Shroud of a Nightingale” by P.D. James. The basis of patient care, was to make them feel better. While medical advancements have allowed more cures to be accessible, the element of “care” has been re-defined to what I perceive as incomprehensible. Coaxing isn’t a solution, but the desensitization towards pain today is a curious affair.

A patient is unwell. Let’s run ten over scans. It’ll include a bunch of blood tests, an MRI scan of the brain which you might not be able to do when you’re weak, CSF tests via a lumbar puncture and many others. Let’s go through everything that the textbook taught me to, because everyone that comes within the door is a “case” that can be encountered.

No, I am not medically-trained. Yes, I understand the importance of finding out the cause of a discomfort. Yet time and again, I see people close to me go through this routine only to receive an oddly sanguine response of “the tests are inconclusive”. But hey, doesn’t matter – more wouldn’t kill, so here’s a heap of antibiotics you can try to take to fix your undeterminable issue.

I wonder, sometimes, if it was all necessary. Could a better preliminary diagnosis have resulted in more accurate tests and hence a more effective treatment? That bunch of tests and medication – did it serve to build up or wear down the patient’s immunity? Does the patient’s mental health still matter? I’m not sure we realise that bland food, pain and agony doesn’t motivate anyone to get well. Gone are the days where nurses swallowed feeding tubes consciously, to learn what the patient would feel in the process. Everything is deemed “a simple procedure” and “minor discomfort” today. But – it is not JUST a procedure. Your equipment standards have increased; your emotional standards inversely proportionate.

Medical care is great; patient care isn’t. Here’s hoping that some day someone will look into it again.

a spectacle on spectacles

Remember some time ago I’d mentioned about “the bug list”?
I think it is coming to good use.

I notice a rising trend of distaste towards the need to wear spectacles; women find the need to put on glasses uncool, of which would taint their image of perfection. One after another they fall like dominoes, submitting to such beliefs that the evils of the glasses overwhelm any form of natural beauty they might possess.

I couldn’t comprehend this mentality, but I realized how it has affected my perspectives as well. Years back, I had an eye injury that disallowed further use of contact lenses. I eventually learnt how spectacles could be a form of accessories as well, instead of what many deem a burden or flaw. Recently, it also donned upon me that I have been living with a luxury good – a pair of spectacles could be worth a year’s salary at less-privileged areas.

This got me thinking that it is time to make a difference. I have two aims: (i) change behavior/beliefs, (ii) help the less-privileged. People need to know that they look good in their spectacles; but folks who don’t like their glasses or who no longer need it, for whatever reason, should give it up to those who might need it.

I am not jumping into this as part of a rash decision or extreme boredom; rather, I wish to start small and see what little steps we can take to translate a complaint into something useful. I’ll do my due research prior to making any forms of commitments, but help me out, everyone! Please tell me your thoughts on having to wear glasses!

just when you thought your words wouldn’t kill

A cacophony, many voices, but nothing in focus.
A nudge, then silence.
“I asked you a question! Seriously, are you deaf?!” A resonating exclamation, then an outbreak of laughter.
She raised her head, a ghost of a smile slowly creeping up her face, sadly, solemnly, silently. “Yes, I have hearing disabilities in my left ear.” She paused, “Sorry and what was your question again?”

Just when you thought your words wouldn’t kill – you broke someone all over again.

I may be hyper-sensitive, but how often have we said something that apparently meant so little to us but hurt someone else so deeply? Insensitivity – that’s it. I say this because I’ve once too often encountered such incidents, one of which was the occasion above. I am blessed to be all good & well in most aspects – many of us are – and this makes us forget those who aren’t.

Despite the restless crowd, he tried to explain some complex graphs on the presentation deck: “This blue line represents x, the black line below represents y, and this … I don’t know what colour this is, this fuzzy funny looking coloured line represents z”. A shout-out came from the audience “It’s the green line you’re talking about, right? What, are you colour-blind?”
Without hesitation, he answered, “Yes I am. So I can’t see the colour. I’m sorry for not having described it better.”

Again.

Why should they have to apologise for what had not been their fault? I don’t think chose to suffer. I am in no way supporting self-pity or self-victimisation. I just wonder how little we care about the feelings of others. A slight migraine could make my blood boil – what amounts of frustration will one feel when one’s hearing is partially affected, or when vision isn’t entirely clear the way we see it?

I wondered how I might react if I were ever diagnosed with a terminal illness. Will I have the courage to embark on treatment, or might I avoid the endless needles and side-effects of various medications? Many muster much strength to face their conditions, some manage to laugh it off, several live to encourage others, and the least we could do is to accommodate, understand and maybe help.

Curb your impatience for once – repeating a question or giving a little more explanation won’t cost you a thing.

When it was all over, she shook her head, slightly bemused as she told me, “They asked me if I was deaf. Everyone always does. How do I explain that I used to be able to hear everything they did? How do I tell them about the dreams I had to give up when I found out I had lost my hearing? Maybe I would’ve been a different person if things hadn’t turned out that way.”

Just when you thought your words wouldn’t kill. Think again. 

regression? unknown.

This is a first post of diving back into the history of medicine. I had intended initially to start with Koch, due to my fascination of his perseverance, but had recently encountered George Huntington’s works on describing the disorder at age 22. I’m not sure how this is linked but each time I think of Huntington’s disease I get a tad affected, I think of the novel Flowers for Algernon and I find life very, very sad.

I cannot claim to know much about Huntington’s Disease, especially since I am only starting to research and learn about it. I find regression sad, in all cases, of which the most common being Alzheimer’s. It is so much a person learns from his Day 1 on earth, and with HD, you lose your physical dexterity to chorea, your mental capacity, and eventually you lose everything. Potentially, you lose the people around you who no longer understand, or choose not to understand, brushing off your anxieties and flaring up at your irritability. You forget, involuntarily, all that you have treasured, all that you have mastered, and it all falls into dementia.

I know people who suffer from dementia – some self-comforting individuals believe it may be better for sufferers to indulge in their own worlds, oblivious to the cruelty of reality. I beg to differ. While it may sound positive, I’m not sure anyone would appreciate being highly dependent on others for help all the time, even for things as simple as chewing, or having someone perpetually misunderstand you due to difficulties in speaking. What makes HD sadder is that even episodic memory fails, one step worse than Alzheimer’s.

I’m not sure hot it was related to Flowers for Algernon but I remember feeling terribly depressed after reading the book when I was a teen. It was the same regression that killed my emotions. I guess when Charlie (protagonist of the novel) was subject to a procedure that endowed him with astonishingly high IQ which he lost later due to the failed experiment, I saw how one could lose everything he had gained. Charlie’s high IQ allowed him to work differently, think differently, and when he lost this intelligence, he lost everyone around him – his new job, his new relations, everything. And this novel ended with him requesting someone to leave flowers on Algernon’s grave (the mouse who became Charlie’s friend from the same experiment).

There you go – all he had at the end, was a little mouse that suffered just his fate. Who could understand what he was suffering? Who could know, or remember, what he knew? So with his change in character following a regression, his sexual partner left him in fear of his transformation. The book states that Charlie remembers that he was once a genius, albeit reverting to his past form, with IQ of 68. He did not wish for anyone to take pity on him, hence moved away from the rest of the world he knew. The character lost his skills, knowing that it was an experiment.

Can anyone imagine, how a patient of HD or dementia, might feel about losing his skills and capabilities without understanding how or why it might have happened? And it just keeps happening, day after day, time after time, with no apparent way to salvage the situation… …

with lots of money comes lots of cures?

There is so much to do but so little time in life. And sometimes, even with time, there is no opportunity.

I was reading about Mogul Using $100M in Race to Cure Daughter this morning and it reminded me of how little care the world gave to rare ailments.

What struck me most significantly was the statement of “while the gene causing the ailment had recently been discovered, nobody in the drug industry was doing much about it”. Do you wonder, how much more is discovered, known but uncared for in the world? I do not imagine that the world is free and altruistic, but it half-amuses me how the world can be so cold and uncaring. It resonates louder than ever that money speaks: if a drug could bring in huge profits because more people suffered from the ailment, there would be a cure.

It brings fear to mankind, it brings uncertainty, and it definitely brings anger to me. This is not confined to the case reported.

This guy can help his child & many others suffering from SMA because he has financial capabilities – what about others who are incapable of expediting the research process for other diseases? Again, I do not claim to be able to (i) provide financially for anyone, (ii) selflessly commit to the betterment of mankind, and hence half the world would tell me to stop complaining. But it is disheartening, definitely, to know that there is so much sadness in the world that we cannot do much about. Not because we are unwilling to help, but really there is so little we can do.

I guess it has been a tough week and a memory-surge of the past does not help. I was watching a documentary last night about polar bears. How one Mother Bear with a cub struggled to survive on a rocky island, scouring the area for grass in all desperation and consuming remains of a whale’s bone for calcium in order to feed the dear baby, fighting off nasty male bears that threaten their safety etc. And another Mother Bear with 2 cubs, had better lucky with an iceberg that brought them to the snowy landscape they needed to survive, with a good supply of seals as prey. This single little bear was almost half the size of the two other babies, having been starved for the past 4 months! What a sight, a sad unfortunate sight. I’m not sure if this story makes any sense to anyone, but I think it brought me to tears looking at how the Mother Bear with a single cub had to hunt precariously to produce milk to keep her baby alive, how she had to weigh the risks of fighting a pod of walruses against losing her life and leaving the poor little fella in the wild. Maybe, even resorting to consuming grass and chewing off the whale bone, definitely a disheartening sight. Life is tough out there, and the little one was much of a liability. It somehow got me thinking if I had been like that. Was there a time when I was a liability that could have hindered some form of progress? As the unknowing bear cub duo chased after their mother as she hunted, it scared away some good prey. Did I ever make the same silly mistakes in the past?

Worse than the above – there is no longer a chance to remedy the wrongdoings today.

It really seems like a disjointed thought-regurgitation here so kindly forgive me. It’s a general feeling of dejection about how things have gone south. Illnesses that appear so simple, but due to a lack of sufferers, we will not get a cure. How counter-intuitive must this get? Then it all comes in a landslide – we lose the ones we love, we wonder if we could have done better, we wonder if things could change. We might wish, as often, “one little bit of change at a time”. But it doesn’t always work that way. And for the 101% of the time, it does not for me.

I guess this is more a realisation process that came too late for me, so to all who may chance upon this, don’t live to regret something you might be able to do right sooner.