It is 12:30 AM and I am wide awake after drinking one too many lemon iced tea at the local Chinese Cafe with dinner. So, I am here to write down some thoughts about love and how it sometimes manifests through our actions in a rather illogical way.
Lin Yutang, an erudite scholar, writer and philosopher whose writings have immensely impacted my time traveling in Korea and Japan in my late twenties, once wrote that when he passed a beggar on the street and knowing full well that the beggar was an alcoholic who would squander the donated money in his tin can on booze and other licentious activities, gave money to the poor guy anyway. Perhaps, it was a selfish thing to do and an act that relieved his own discomfort at the sight of someone in such a sad shape and he may, unwittingly, have been a passive enabler for the addict. Lin Yutang's reasoning for doing so was that it was an act to alleve a suffering, however temporary it may be and we must all do something to help relieve suffering in others by whatever we can do at a particular moment when we have the window of opportunity to do so. Lin claims to be an atheist, but as a son of a Christian pastor, I know his Christian charity never left him.
In the movie, Splendor in the Grass, when the main character, Deanie, has a mental breakdown and is instituted for psychiatric care, her parents wrestled with the idea of taking out their retirement money to help pay for her rehabilitation. The parents emptied out their retirement investments for her care because they loved their daughter so much that they placed her well being before their own in old age. In the end, this decision worked out for the best because the Great Depression left people's retirement funds empty and bankrupt. When one does something for love, you can't really lose.
When my dad was in the terminal stages of liver cancer and had only months to live, he requested that we buy an herb called Fucoidan for him because he was convinced that this magical exilir would cure his cancer. Perhaps, it was the buildup of ammonia in his brain or the irresistible informercials that claim outrageous results, but he desperately wanted one of his children (my two brothers and I) to buy it for him. It was not cheap but I decided to spend a grand just to give him peace of mind. Who cares that it doesn't work - they were mostly seaweed capsules harvested from deep in the ocean; but what mattered was that in his dying days, he knew one of his children cared enough to get it for him. My brother thought it was a waste of money and that I was being stupid. I think he is the one who doesn't get it.
There are outrageous and sometimes not-so-outrageous claims by herbalists and alternative medicine advocates that claim that their supplement or essential oil or diet or therapy method will cure a child of autism, CP, seizures, chromosomal abnormalities, tics, ADHD, etc..etc.. Honestly, when I read somewhere that an essential oil is going to cure my son of his Dup15q, at best I hold a healthy skepticism and at worst tilt my head way back and bellow out a hearty laugh. I know these can help alleviate some of the symptoms, some greatly more than others, but I am not really betting on them "curing" him. I remember another parent get irate that these expensive "snake oil" methods are even being considered by other parents. She had a point. I've seen documentaries where some parents take out second mortgages just to pay for therapies and supplements for their child with autism. And, although people claim Big Pharma is just out to make money and really does not have the best health interest of a patient, many in the alternative medicine field are just as money driven . When a family has a tight budget and none of these alternative methods have clinical evidence based proof of efficacy, would it be prudent to squander money on purchasing them?
Having said that, I don't think anybody should shame a parent for choosing to go the alternative route, even after having all the information presented to them. You see, it is an act of love for their child and who has the right to dictate how a parent chooses to show their love? If they want to spent $500 a month on therapy for their child even if said therapy has no "evidence based proof of efficacy" because the doctors have no answers and the parents feel they need to do something, then let them.
There is no cure for Dup15q. The doctors have no answers. Research develops at a snails pace and the parents feel their hands are tied. There is no right or wrong way to show heart-felt love and when one does something for love, you really can't go wrong. Afterall, that is what this disability journey is all about, Love.
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