SINGAPORE: How does one announce the diagnosis of a terminal illness?
At 50, instead of fleshing out my retirement plans or planning grand adventures with my daughter, I am grappling with an incurable disease. Amyotrophic Lateral Sclerosis (ALS) has already robbed me of my physical autonomy and the ability to live independently - and left me with a countdown clock of two to five years.
SHARING THE WEIGHT OF ILLNESS
Understandably, some people might prefer more privacy. Who wants to be the centre of attraction under such morbid circumstances?
Perhaps they refuse visitors, anxious about being remembered at their frailest, not at their best. Perhaps they harbour hopes for a miracle that would fully restore their bodies. Maybe they just need more time to be alone.
Some of my friends later told me that they were overwhelmed by the gravity of my condition. This disease is aggressive, its trajectory chilling. They were unsure if I was ready to receive visitors, and wanted to give me time and space out of concern for my well-being.
At the same time, I took a calculated risk to reach out to others with whom I had not regularly kept in touch. Would more casual friends be prepared to share the weight of a debilitating illness with me?
Looking back, I realised that it might have hurt some friends to find out they were not among the first to know. But I knew true friends would somehow understand.
MANY WAYS OF BEING A FRIEND
“But I don’t know how to be there for them, or how to comfort them,” I hear you think out loud. Well, there’s no one way of being a supportive friend.Those who offered practical help - driving and accompanying me to countless medical appointments, running errands, getting my favourite food like bak chor mee - eased my burden immensely.
Simple acts of scratching an itch, adjusting my sitting position, or reaching for a glass of water have transformed from mundane to monumental - now that I require assistance for all these actions as my muscles weaken and waste away. Friends who showed up helped give my caregiver some well-deserved respite.
Other friends kept a close watch on my emotional and spiritual well-being: Including me in social and church activities, taking me out for a walk in the park, or even taking me on overseas trips despite the added logistics and planning such as getting me travel insurance for pre-existing illnesses.
Friends from afar checked in on me regularly through messaging platforms. Far beyond mere words of comfort, they helped me cling onto some semblance of normalcy and saved me from wallowing in solitary self-pity, or worse, slipping into depression.
Equally important were friends who listened without trying to "fix" things that could not be fixed in the first place. They engaged in honest conversations without engaging in verbal and spiritual platitudes.
I am grateful for those who struck the delicate balance of showering me with care and concern without overwhelming me with constant attention, those who could skilfully respond to my utterly confusing, contradictory need for both support and space.
The outpouring of love and concern more than made up for the “morbid curiosity” of some friends and emotional exhaustion from having to deal with the same questions from different friends.
More at https://www.channelnewsasia.com/commentary/how-be-friend-terminal-illness-dying-friendship-4561956
