A Forgotten Epidemic

Encephalitis, also known as acquired brain injury, is an inflammation of the brain. Most of the types of encephalitis are caused by viral infection. 

Between 1915 and 1926, an epidemic of encephalitis lethargica spread throughout the world, affecting five million people, a third of whom died in acute stages. Those who survived were conscious but not fully awake – sitting motionless and speechless all day, lacking motivation to do anything. 

In the spring and summer of 1969, the late Dr Oliver Sacks began to use the drug, L-Dopa at Mount Carmel – a total palliative care centre. This sparked the “awakening” of fifty individuals. They emerged from their decades-long isolation and find themselves back in the world. They all began to dance and talk together, and delighted in each other’s daily-increasing health and vitality. There was communal health, of shared excitement and hope.

However, in September, there emerged tribulations of all sorts. Some suffered treacherous side-effects of L-Dopa, such as respiratory crises, while others to their own regressive needs. In the small wards, the despondency would spread from one to another. Every setback then aroused fear in others and every discouragement a blow to the morale of the community. The atmosphere of the ward, its mood, became all important.

The condition of encephalitis lethargica is poignantly expressed in the following recounts.

“Nothing, just nothing.” Miss R would say when asked what she was thinking about.

“I think of a thought, and it’s suddenly gone – like having a picture whipped out of its frame. Or I try to picture something in my mind, but the picture dissolves as fast as I can make it. I have a particular idea, but can’t keep it in mind; and then I lose the general idea; and then the general idea of a general idea; and in two or three jumps my mind is a blank – all my thoughts gone, blanked out or erased.” – Miss R

“She seems to have no appetite for anything, really no appetite for living.” wrote the speech-pathologist, Miss Kohl.

It is a wonder how the world can forget such a moment in history – when a strange disease stole the lives of millions, and for which a cause has yet to be determined. Also, it serves the question of “Should life be sustained, when all hope seems lost? Especially since these cases have shown that recovery is possible after a frozen state of 50 odd years.”

Leaving Social Media

A week ago, I disabled Facebook and Instagram on my mobile phone. Why?

In late 2015, I started an Instagram account to share my experience of travelling through Germany and Italy. Having no idea about location and keyword tagging, my posts received little or no attention. As time passed, I learned how to tag my posts properly but I wasn’t zealous like people who included tags in separate comments. Also, I began adding more friends, so to speak, or rather just to have more followers. I know many if not most, do not actively like my posts. I do not actively like their posts either. So, what is this about?

What began as a wish to share my experience, became a day-to-day mindless habit of scrolling through pictures which inform me about people’s lives; or rather the side of life they choose to show. It became worse when Instagram caught up with Snapchat and introduced live stories. Surely, we cannot know more about another than through following their daily schedules. Curiously, mundane lives do have elements of interest, to share about.

Of course, I did enjoy Instagram for the stunning and at times, inspirational pictures of National Geographic and adventure photographers. But I was sucked into a world of materialism and superficiality. Without knowing, I was absorbed by how people looked, where they travelled to and whatever good they had that I didn’t. Furthermore, I began to mind how many likes my post got. It was human nature to keep track of progress. I became a person who cared about whether someone was noticing me and liking what went on in my life. To be honest, this isn’t me.

Facebook had a lesser grip on me for there were more video posts than photo posts. These videos were mostly of comic nature, with okay to poor quality content. What was worse were the posts on animal abuse. Surely one doesn’t need to be constantly shocked with graphic images to know that animal abuse exists and inhumane people deserve to be hated on. Overall, Facebook was another mindless scroll of videos and random posts, of casual likes and dislikes.

Upon reflection of time – the measurement of our lives, I realise I haven’t been spending it well. In pockets of time – waiting for the bus, travelling, during meals, etc. – I have been mindlessly scrolling through these applications, and compulsively keeping my Instagram feed active. What then have I gained through this habit? A year on, I have gained little, socially or intellectually. I must come to admit that I have been wasting my time. Then one will ask, what do we do when we have nothing to do?

Surely, one can idle or be at ease with boredom. In the past, people gain inspirations and ideas in times of idling. These days, we do not allow that emptiness which can drive creativity and independent thought. Instead, we fill them with poor content, and drive ourselves along the mainstream and lose our ability to be uniquely, ourselves.

Of course, I must say that I am quite a failure at social media, or in fact socialising. That is why social media has lost its purpose for me. In the first few days of disabling the apps, I can’t help but want to feed my habit of viewing. Instead of re-enabling them, I downloaded other apps for quality content reading, such as science and other news. Yet one does not engage the intellect all the time, so there are definitely periods of emptiness. In these, I idle, and let my mind work in the way it wants to work. I do not gain inspirations everyday, but they sure come often. Instead of gazing at my phone, I now observe life around me. I observe my surroundings, people and see things anew. I hope I no longer need to search for lost time.

We must always reflect on our habits, for they make up our lives. If we find our habits meaningless, we must persist to change them.

Tourette Syndrome X Technology

With reference to my previous post on persons with Tourette syndrome, I have the following experience to share:

One afternoon, as I was on the train to work, I heard repetitive guttural sounds. It was as if one was trying to remove something stuck in one’s throat. It was so obtrusive that passengers looked about, to find out from whom the sounds emerged. After several minutes of furtive glances, to my shock and possibly to other’s, it was from a young teenager. He was seated opposite me, in a lax manner, with a floor-ball stick in hand. He looked absolutely healthy with his tanned skin and athletic build. Yet upon observation, one could see the throat movements as the sounds were made, uncontrollably. He had his eyes fixed on his mobile phone, just like any other teenager, and that possibly helped him ignore these looks and stares.

It made me realise the benefits of this unconnected, detached, mobile-phone absorbed world. We have basically spared one other of embarrassment, most of the time. We no longer have to stare at each other’s faces or confront what we do not want to see or know. We now have the social right to remain isolated, cold and non-engaging. This must have spared the young man great embarrassment.

Ironically, with the phone, he can be connected, fully and normally, with his peers without being hindered by his tics. Without instant messengers, he probably wouldn’t be able to communicate without interruption. Without social media profiles, he may never be as cool as he wanted to, in real life. Technology has enabled him, and that is to be celebrated.

Why research to benefit few?

After learning of rare medical conditions such as butterfly syndrome and muscular dystrophy, I asked: “Why would researchers invest time and money into solutions that would only benefit a small percentage of human race?”

To this question, my friend answered:

  • With finite resources, governments, organisations and companies will only fund what will give valuable returns.
  • There may be chance discoveries that lead to other scientific breakthroughs.

After reading the article, “Determined Parents are Moving the Needle on Gene Therapy” by Emily Mullin, there are further answers:

  • Gene therapies have become safer and better at hitting intended targets in the body, leading to a handful of remarkable cures in clinical trials. The success rate has risen.
  • Hence, advocates for rare-disease patients are increasingly establishing patient advocacy organisations, raising money for research and even founding their own biotechnology startups to find treatments.
  • Also, many rare diseases are monogenic – caused by a mutation in one gene. It is significantly easier to engineer a targeted protein to reverse the disease.

If you were a medical researcher, would you invest your entire career on a solution that would only benefit a few hundred persons in the world?

Sleep and Consciousness

Sleep occurs in regulated cycles of NREM and REM. For every 90 minutes of sleep, we drift into stages of NREM and REM: N1 -> N2 -> N3 -> N2 -> REM. During REM sleep, the body is paralysed, except for shallow breathing and eye movements. For most of us, REM stage occurs ninety minutes or so after falling asleep.

However, people with narcolepsy or sleep deprivation may fall into REM at the very start of sleep, plunging into dreaming and sleep paralysis. They may also wake at the “wrong” time, so that the dreamlike visions and the loss of muscle control persist into the waking state. At this stage, the person is wide awake but suffers from nightmare like hallucinations and be unable to move or speak. These hallucinations may be visceral, auditory or tactile as well as visual and are accompanied by a feeling of suffocation or pressure on the chest, the sense of a malignant presence, and an overall sense of absolute helplessness and abject terror.

Yet one need not have to have narcolepsy to experience sleep paralysis with hallucinations. Research has shown that about a third and half of the general population has had at least occasional episodes of this. In fact, folklore across cultures share a common experience: supernatural figures that assault the sleeper, some paralysing the victim and even sucking away his soul. While these frightful experiences have led many to believe in supernatural forces, there is in fact a physiological basis for this occurrence. Where our minds fail to comprehend, we can always look to science.

For me, I have had an experience of awakened consciousness in sleep, accompanied with bodily movements. On 25 August 2013, I woke mid-sleep at what may have been 3am. I found myself scratching my legs and told myself to stop. Yet, I knew I could not will myself to do so. I even mused to myself, as if one half of my brain was talking to the other, as I observed my bodily movements. I heard sounds as I made them. Then, I got off the bed and made my way to the washroom. As I sat on the toilet seat, I heard myself hum a tune. I found it funny that I was humming, and yet I knew I could not will myself to stop. I do not know if I saw myself in the mirror, or how I made my way back to bed. Yet, all these observations were remembered clearly when I woke fully the next day. It impressed upon me that we know so little about our consciousness, about our minds. It was an unforgettable experience. I never had the same experience since then.

Nevertheless, there were several times I woke to realise that I had sent a message mid-sleep, with absolutely no recollection of having unlocked the phone, and sending one. It would seem right to say that I had sent a message unconsciously, but that offends logic. It would then seem appropriate to say that I sent it subconsciously, while asleep.

Sleep, dreams, our consciousness and our minds continually interest me over the years and this curiosity will never be satiated.

For more information on narcolepsy (and cataplexy), hallucinations and sleep paralysis, do read Hallucinations by Oliver Sacks.

 

On John and Jacqueline Kennedy

If a film so provoked my interest, I have to research about it. Here’s what I found after watching Jackie (2016).

John F. Kennedy, in his pursuit of young Jacqueline Lee Bouvier,  gave her several French books to translate for him. Poor Jacqueline, much in love with him, spent months labouring for him. They married in 1953.

Unlike John, who was candid, charming and a people person, Jacqueline was an introvert who preferred to read and write. When John became the 35th President of the United States, she had to step into the limelight. Her shy demeanour was obvious as she gave her first awkward waves from the car.

During the political career, John was ridden with copious amount of stress, with meetings after meetings. In 1961, he faced his first defeat. He sent 1500 U.S. trained Cubans to the Bay of Pigs, with the intention to spur a rebellion which would overthrow the communist leader Fidel Castro. It was a failure. The Cuban government captured or killed the exiles and he was forced to negotiate for the release of the 1189 survivors. His wasting of lives, of these men brought him to tears, according to Jacqueline.

In his years of service, John’s back problem returned with a vengeance. He had to walk with crutches and manage his pain throughout long hours of meetings or travel. Jacqueline said “I felt so sad for him.”

Often, Jacqueline accompanied him as they met leaders around the world. In later accounts, she would reveal her fiercely truthful opinion of these people. She once noted that Martin Luther King was “a tricky” person, and that she hates “all french people. They are all for themselves.” Her perceptive accounts of people, and her ability to bring them into conversation, brought many advantages to John’s career.

For the White House, she had not merely spent the people’s money for vanity. She refurbished objects of historical value, in order to piece together a narrative for America. So meticulous was she in her observation that she noticed similarities in engravings of different furnitures. She later put them next to each other to form a coherent picture. She had a true taste in Art, and the historical and cultural knowledge to back it up. The photographs before and after her work, are astounding.

Unfortunately, John was assassinated on 22 November 1963. The second bullet collided with and chipped off part of his skull, leaving a gaping hole. He slumped over onto Jacqueline’s lap. Later, Jacqueline returned to the plane and refused to change out of her blood-stained pink suit. She wanted the world to see the violence committed against her husband. Even after the traumatic experience, she remained under control and held herself in dignity.

In the aftermath of the assassination, she made the decision to have a funeral procession, in order to honour the legacy of her husband. Not since the funeral of Britain’s King Edward VII in 1910 had there been such a large gathering of presidents, prime ministers and royalty at a state funeral. Even in the midst of huge security concerns, the new president Lyndon Johnson, marched behind the caisson.

Sadly, this was not the last Kennedy funeral Jacqueline would attend. On 5 June 1968, John’s younger brother, Robert Francis “Bobby” Kennedy, was assassinated. He was fatally shot in the head by a Palestinian immigrant, just because of his “sole support of Israel and his deliberate attempt to send those 50 bombers to Israel to obviously do harm to the Palestinians”. The date of the assassination was the first anniversary of the start of the Six Day War between Israel and its Arab neighbours. In the war, about 1000 Israelis were killed, whereas about 15000 Egyptians, 6000 Jordanians, 2500 Syrians  were killed.  Perhaps, we can begin to understand his reckless hatred.

In a world of conflict, people in positions of power will always bear the risk and consequence of their decisions.

On the biopic – Jackie (2016)

The biopic, Jackie (2016), is set in the days following the assassination of President John F. Kennedy. It depicts the First Lady Jacqueline Kennedy, in her moments of grief and trauma, and her struggle to regain control and preserve her husband’s historic legacy. The film was beautifully and artfully made, as if an embodiment of Jacqueline’s poise. The script composed largely of her words, articulated with uncanny likeness by Natalie Portman, seemed to flow like poetry. Yet, Natalie’s intensity, and expressiveness of facial expression, was quite beyond Jacqueline’s rather easy composure even as she conversed with leaders around the world. Nevertheless, Natalie’s interpretation of Jackie as she metamorphosed, from a woman who was her husband’s woman, to one who survived without him, was carefully thought out.

For me, the best frames of the film were during her march with the casket. Her face, though composed, almost stoic, bore the stain of tears; and the light rays filtering through her black veil were at times blueish black, and reddish black. The significance of the march would be remembered by the world, for many years to come.