Life's a strange teacher.

Some lessons are so hard they knock the wind out of you, like a typhoon that tears through your house, sweeping in with such seismic force, creating absolute mayhem before making a grand exit out your front door, leaving you bewildered and blank and alone to pick up the pieces of what precious little is left. But in such extreme situations does the human spirit rise to meet the occasion, displaying courage and honour. There's always something valuable to be gained from losing something infinitely precious.

This is one such story.

Joan & Marc met through mutual friends in 1998, and he knew almost immediately that he would marry her.

Joan didn’t make courtship easy for him. He was the captain of the national water polo team and had led it to win seven gold medals in the Southeast Asian Games. He had the cocky, self-assured attitude of one used to easy victories in life, a life of which flattery and admiration was a constant part.

She took his roguish charm and general flippancy as insincerity, and interpreted his ardent pursuit of her as yet another one of his frivolous and short-termed endeavours. She was downright rude and sometimes malicious to him. Gifts were banished into the wastepaper basket; cards were torn up in his face. In response, he kicked into fourth gear, taking pains to trace her whereabouts, appearing everywhere she went with the dogged tenacity of a seasoned sportsman.

“At that time, I travelled a lot for work. He’d track me wherever I was in the world and would send flowers to the hotel. He’d find out my flight details and would be waiting at the airport to pick me up when I got home. Every single time,” Joan recalls with a wry smile.

His persistence was rewarded.

9 months later, he walked down the aisle with his bride. In pictures from the wedding, his face is scowling red from the heat, unused to being trapped in a three-piece suit. His eyes, however, sparkle with unadulterated pride and joy.

First tremors.

Then, it started with his right hand. At first they attributed it to work strain. After retiring from water polo in 1999, Marc worked as a project manager at his uncle’s construction firm and the nature of his job was often necessitated the use of physical strength.

In July 2003, he had difficulty manoeuvring chopsticks and zips. Then he lost his ability to tie shoelaces and turn door handles. He was frequently lethargic and slept much more than usual. Worried, they decided to seek medical advice. Later, Marc had been diagnosed with Amyotrophic Lateral Sclerosis (ALS), or Lou Gehrig’s disease, the destruction of cells that control essential muscle activity such as speaking, walking, breathing and swallowing.

Tragically, this illness was terminal.

These were difficult times for Joan. In September 2003, she lost her father to colorectal cancer, and was missing him dearly.
Shortly after came Marc’s shocking diagnosis.

“When he was initially diagnosed in March 2004, we were dazed. I was dazed,” Joan says. “One serious sickness after another. Terminal illnesses. There was a thin, goading voice whispering every second, ‘You’re no good, that’s why they’re dying.’ I think Marc took the news far better than I did.”

“It was awful,” she continues, “Lou Gehrig’s disease is not like cancer, where there are instructions, steps they teach you to battle your sickness. You may not pass the final examination but you still have study material. But this… was like the pronouncement of a death sentence, death by slow torture and no chance of repeal.”

On coping and dealing.

It was painful to go through his deterioration --- not being able to drive, having to be fed, using a wheelchair, putting on a neck brace, and finally, the entry of a BiPAP machine to aid his breathing. Marc handled it with remarkable adaptability and dignity. His optimism and buoyancy made sure their lives were never overshadowed by the disease. It had a debilitating, devastating effect on his body, but never dimmed the spark in his eye.

On Joan’s birthday, she came home from work to find a FedEx package addressed to her. In it was a Prada bag. Unable to step out to shop, Marc had ordered it online by himself. Because of a Luddite and his condition left his hands not quite in concert, it had taken him weeks to accomplish this task...

And on his 38th birthday, he grinned from the seat of his new wheelchair and made a wish to God to help him get better before he blew out the candles.

As Marc grew weaker over Christmas 2005, he forced Joan to make a list of what to do should he stop breathing. 1. Turn on the air conditioner (to delay decomposition of his body) 2. Call the doctor at this number…

“He would tell me, ‘You know that you might wake up one morning or come back to work to find me cold beside you.’ We chose his obituary photograph, clothes to wear in the coffin... He wanted us to prepare as much together so I didn’t have to deal with too many things alone.”

Joan had to prop him up for 5 minutes and help him down again when his neck got tired, every night, in case his lungs “forgot” to exhale, which would send him into a carbon dioxide coma.

In the middle of that routine on Jan 9, 2007, when Joan was helping her husband to sit up, Marc suddenly became agitated.

““What’s happening? I can’t see you, I can’t see you...,” he repeated,” Joan recounts of that tragic memory. “And it was in that defining moment, I knew he was going to leave me. I held him tight, and told him that it was time to go and that it was okay to go. He stopped struggling. The full film that veiled his eyes since he got sick was suddenly gone. He seemed to look right through me, with a small amount of concern. ‘It’s okay with you? Can I really go?'”

4 years after he was first diagnosed, as she gave her blessings, Marc died in the arms of his wife. He was 38. His obituary quoted the Bible verse 2 Timothy 4:7: “I have fought the good fight, I have finished the course, I have kept the faith.”

"It just seemed the most natural thing in the world."

“People have marvelled at my strength. But they don’t understand. It’s not about me. How must he have felt, a man at his prime robbed of his freedom. I felt so sorry for him. I was able. He was not. I had the capacity to give, to choose to move as I pleased. I had choice. He didn’t. And he was the love of my life. Was it strength? I don’t know. It just seemed the most natural thing in the world."

"Now when I look at his picture, I miss him so much. He looks back smiling at me in perfect repose. He looks different, somewhat foreign. His spirit is close to me. I am fortunate to have known him and to have experienced love of this degree."