for kenjin

An abridged version of this article that I wrote will be published June 2007 in Camp Rainbow's 15th anniversary commemorative magazine. Kenjin's parents truly were an inspiration.

The popular Internet information website, Wikipedia, offers the following definition of histiocytosis: "Histiocytosis is a rare blood disease that is characterized by an excess of white blood cells called histiocytes. The histiocytes cluster together and can attack the skin, bones, lung, liver, spleen, gums, ears, eyes, and/or the central nervous system."

It is an academically thorough but somehow still inadequate definition of a vicious and incurable disease; words alone cannot truly convey its terrible reality. A picture on the other hand, according to the adage, is a thousand times more efficient.

18 year old Wong Ken Jin portrays such a picture. But a still-life one. Histiocytosis has infected his brain and robbed him of nearly all his motor abilities. His body lies in complete laxity and he spends most of his time in a motionless horizontality. Ken Jin lives in a perpendicular world, an alternate reality where form belies function, or lack thereof. He is lucid but has no means to coherently express himself. He can hear and see but cannot speak. He moans - his only tangible signal for attention. He is totally dependent.

But in spite of the impotence of his corporal shell, there is a twinkle in his eyes. It is a glimmer, that in its fragile innocence impels one to seek a hope beyond hope and find treasure in the most trivial of things. Ken Jin can still move his eyes, and from time to time, the corners of his lips curl ever so subtly, into an almost imperceptible expression of some momentary amusement or joy. Then there are the occasions of genuine bliss, like when he sees a favourite person he has missed for a while. The moans turn into delighted gurgles, his eyes brighten and frolic in excitement; an inner mirth struggling to burst from a deadened vessel determined to contain it. The vessel always succeeds. But only partially. His eyes speak. They laugh. They dance. They provide a window into the stark vitality of his restless soul.

In abject darkness, a light no matter how faint, becomes a beacon.

The picture that Ken Jin portrays is worth ten thousand words and more. Words that are unspoken but not unheard. Words enough to fill the pages of an entire book - a love story written not by Ken Jin himself, but by the people who have sacrificed much of their own lives for the sake of his. They are the heroes in his story. They are the people whom, when Ken Jin was still in possession of his faculties of speech, addressed as Daddy and Mummy. The last time those words kissed their ears was too many years ago.

Wong Siew Seng and Chan Kum Lin, both 50, are a genuinely warm and affable couple. Siew Seng is a manager in an American telecoms firm while Kum Lin works at a French MNC. Ken Jin is the eldest of three children - they have another teenage son and a little girl. There is no doubt that they are doting parents. But they put up a brave front when talking about their firstborn. It is an unexpected stoicism that disorientates and redefines one's preconceived notions of parental love and its conventional manifestations. But then again, the Wongs are anything but a conventional family.

Years of practice, close calls and heuristic intervention have taught them the limits of their son's physical integrity. Siew Seng and Kum Lin do not fuss over his fragility or seem vexed by his vulnerability. Even the recounting of the emotional roller coaster they've been on since Ken Jin's diagnosis at 19 months of age, takes on a decidedly phlegmatic register. But then it occurs that such is the nature of pain. A cautery cannot heal without also desensitizing.

But emotions can sometimes have a cruel tenacity. And every now and then a leak springs in their stolid veneer. And tears flow. It becomes obvious how they have vicariously assumed the lost hopes and dreams of their son. It becomes obvious how transcendental the depth of their love for Ken Jin is.

Both by choice and circumstance, their lives revolve completely around making life as meaningful for Ken Jin as possible. They spare no expense. The family take annual overseas vacations together. Typical Singaporeans, Australia is a recurring favourite. Accommodating Ken Jin's physical stamina for these trips is obviously no small feat. They go to all lengths to ensure that Ken Jin is able to participate in every single family activity. Siew Seng tells the story of how once, in Australia, on a hike through a dirt track, the wheelchair that Ken Jin was in broke down. He and the other men in the group - thankfully their extended family had joined them - spent the rest of day trudging through the woods, carrying Ken Jin in his wheelchair. Love knows no burden too heavy.

Their desire to ensure that Ken Jin leads a full life - as far as circumstances allow - persuaded them to sign him up for Camp Rainbow in 1998. He has been to a total of five camps in all. Each was as much an experience for him as it was for his parents. There were initial jitters of course; it would have been the first time in his life that Ken Jin would have spent an extended period of time away from his parents' supervision. Siew Seng and Kum Lin were rightfully concerned whether the camp volunteers, most of them young adults, would have the capacity to adequately shoulder the demands of caring for Ken Jin. But as they soon found out, their worries were unfounded.

Years after his final experience with Camp Rainbow, Siew Seng and Kum Lin still speak fondly of the volunteers who took care of their son during the three-day camps. Their eyes brighten as they recall their names and faces as though it was just yesterday. The gratitude and admiration they have for these young men and women who made all the difference in the world for Ken Jin is obvious. They speak glowingly of the sacrifice and dedication each volunteer had for Ken Jin. They also remain impressed by the exacting and efficient manner in which the camps were organized and run. It is a telling tribute that to this day, many of those volunteers have become close family friends.

They still keep in touch and visit Ken Jin from time to time. They are the ones who turn Ken Jin's moans into gurgles of joy and cause his eyes to dance. It is then that for a brief moment, Ken Jin steps out of his perpendicular world and reaches out to embrace ours.