Amyotrophic Lateral Sclerosis (ALS)

Last year amidst the pandemic, I received the heartbreaking news that my friend Sam, had been diagnosed with Amyotrophic lateral sclerosis (ALS).

Just a bit of background, for those of you unfamiliar with the illness, ALS is a progressive nervous system disease that affects nerve cells in the brain and spinal cord.

What are the symptoms?

Early signs of ALS include muscle weakness or stiffness. Progressively all voluntary muscular movements will be affected and individuals lose their strength, ability to move, and even breathe. Many patients undergo a tracheotomy - which is an operation to cut a hole on the neck to place a tube on the windpipe so that patients can breathe - the consequence of which is losing the ability to speak.

How do people get ALS?

Around 5-10 people with ALS inherit it from a parent. The cause of the disease is unknown and there is no known cure as of now. It occurs in both men and women equally.

Life Expectancy

Most people die from respiratory failure within 3-5 years from when their first symptoms appear, although 10-20% live longer than 10 years.

Professor Stephen Hawking lived for more than 50 years after he was diagnosed with ALS at the age of 21. The quality of care a patient receives - whether in breathing or eating - can also extend an individual’s lifespan.

According to Associate Professor Leo McCluskey from the ALS Centre at the University of Pennsylvania, the early onset of Hawking’s disease may have also contributed to the slow progression.

Professor Stephen Hawking (1942-2018)

Unable to visit due to the pandemic, I had contacted Sam’s wife to see if it was convenient to have a video call with Sam.

Unsure of what to expect and nervous on what I should or shouldn’t say, I asked her if I needed to have a pre-brief call with her beforehand. She gently replied,

“It’s ok. Sam is still the same person. Except he can’t speak”.

As shattering as that was to hear, I realized we humans have come to conclude so easily by what we see and hear, and become profoundly affected.

Yet here I was, reminded of a simple truth. That what matters most is what you carry on in the inside.

Sam’s wife was a school teacher, although her family owns one of the largest banks in the country. I felt that she must be an incredibly courageous and special person, to be entrusted with the task of caring for an ALS husband, and to do it with such wisdom and grace.

Hearing her words brought a hard lump in my throat, and flash backs of Sam’s bubbly, enigmatic personality. Indeed, inside he is the same person, but his universe had turned upside down.

I am reminded of the scene in the 2014 Japanese series Boku no Ita Jikan (The Hours of My Life), about an ALS patient who struggled with the decision to undergo an operation that would extend his life from respiratory death and as a consequence take away his ability to speak. He felt that taking away his ability to express himself would leave him with a meaningless life.

We play the cards we are dealt with in life.

When we can no longer play an active role in life, there are still people around us who continue to live, to learn, and to be impacted by us, beyond our imagination.

There are still stories that will be told and hearts to be healed.

The lesson plans that God has laid out may not be visible to us, but rest assured, He has prepared them for good.

Just as the movie, The Hours of My Life, I hope that this write up, too can in some way help raise awareness about ALS and support the much needed research on ALS.

You are remembered, Sam.