Authors: Augusten Burroughs
But it doesn’t matter why, not at all.
Maybe it matters next time, for the next person. But not now, not for you.
Kids are diagnosed with terrible diseases every day, all over the world. This has happened for as long as we have populated the earth.
It may be the single worst thing that can happen to people—maybe to all mammals. Haven’t you seen on one of the nature channels an image of a mama elephant standing above her dying baby elephant?
What’s most heartbreaking about a child with a serious illness is not even how sick they become; rather it’s how good at being sick children are.
And they are even better at dying.
Because children are made out of the truth. All untrue things a child believes are placed there by others.
So you shouldn’t ever be afraid to be honest with your sick child. You will scare them much more by misrepresenting the reality. Kids know when adults are lying. And they don’t like it.
But how can you, as a parent, even form the words, “Yes, you’re dying,” if your child asks you?
As you will one day discover for yourself, sickness, death, awfulness have little gifts inserted into them, just exactly at the right moment.
There is such a gift, albeit tiny. Smaller than the smallest thing you can think of. But that’s large enough to be able to tell your child the truth, even if they are dying, without having to tell them they’re dying.
But first, I must tell you again how small this is. It is not something you can ever wish for and I don’t think I’d pray for it, either. It almost doesn’t exist, except it does. Spontaneous remission is the term used by the medical community to describe what they cannot explain: the sudden, unexpected recovery from an illness or condition.
The nontechnical term is
miracle.
Even if you do not believe in God, you must believe in miracles because there exists several hundred years’ worth of careful—if puzzled—documentation on this medical phenomenon.
Imagine that your child is diagnosed with a terminal, stage-four cancer.
Perhaps you seek second and third opinions and each is identical: your child is dying. There is nothing we can do.
Now imagine that your certainly dying child is eleven or twelve and extremely smart and they ask you, “Am I dying?”
You have never lied to your child.
If your child was terminally ill and they asked you, “Am I dying?” what would you tell them? Because maybe the only thing worse than lying to a child is lying to a child who’s dying.
And what if they had that look in their eyes that seemed impossibly mature beyond their own few years and this look told you exactly, “We both know it, but you have to say it”?
Many children have an innate, preternaturally wise understanding of death. But because children are the very essence of vibrancy and life itself, it is nearly impossible for adults to believe that children could be such authorities of darkness.
All the children I have ever known were honest.
When they lie, it is a clumsy, transparent thing. The weight of the lie causes the edges of their fictional details to sag, exposing the seams.
Dishonesty is an embellishment, it is the gold plating that chips away. Dishonesty is learned behavior that becomes refined over many years.
So, what would you say to a dying child who asked you for the truth?
There are some parents who would want to salvage and protect what little time remains by telling their child, “You will be fine. It’s hard right now, but the doctors are going to cure you.” So that the child can spend the last of their time on earth doing things they love instead of spending this time making philosophical peace with their own mortality.
Other parents believe it is their duty to tell their child the painful truth if they are asked so directly. Because the child, knowing her time is now finite, may have certain things she would like to do before she’s gone.
I believe that no parent can be faulted—indeed, can only be praised—for choosing either direction.
One choice is not necessarily better or more ethically correct than the other.
There is a third choice.
And I believe it is more technically correct than the other two. Therefore, I prefer it.
Throughout the history of medicine, there have been several—but not many—cases where somebody was diagnosed with a terminal illness and then became cured, quite suddenly and completely.
Although this medical phenomenon happens so rarely we can almost think of it as never occurring, the fact is it has and it does.
False hope is a cruel thing to give somebody. And talking about “spontaneous remission” to somebody who is dying is closer than spitting distance to giving false hope.
Except, it’s not actually false.
Which is why even under the most dire medical circumstances, several molecules of hope should be kept in reserve.
And what do we know of anything, really?
I mean,
really
?
Maybe it’s either resignation or assuredness that does you in. Maybe those who have not so much as a flicker of a spark of hope are the ones who spontaneously remiss, who become the meteorite that lands in the corner pocket of the pool table.
Too much hope is a delusion. Buying lottery tickets isn’t optimistic; it’s wasteful. Just as an absence of hope is an engineless plane that will glide
until
, but then no more.
But hope in a lean, trim, reasonable amount may very well be the primary ingredient of miracles.
In February 2009,
Scientific American
published an article about a 1957 medical case in which a man with advanced lymphoma was given a new and experimental cancer drug that was so effective, it shrank his tumors by more than half after only several days; he was discharged from the hospital shortly thereafter.
Except, this patient had been given the placebo form of the new and experimental cancer drug. Which is to say, the only active ingredient in this drug had been the man’s own
hope.
Those who were given the actual pharmaceutical showed no change.
Only the man who had been given nothing more than a little bit of hope had improved.
The placebo effect is a medically established fact.
What’s not so well established is how it works.
Obviously, what we believe about our health can have a profound impact on it.
But in the absence of any hope, such as when a person is told there is no hope whatsoever for their condition, a similar though opposite phenomenon may occur: it is known as the nocebo effect.
The
nocebo effect
is the term used to describe the measurable, tangible, negative physical response that can occur when somebody is given a placebo and told that the “drug” will have harmful—instead of positive—effects.
While both the placebo effect and its dark-side evil twin are medically documented, clinically accepted facts, how either works is largely a mystery beyond simply saying, “Well, mind over matter is very powerful.”
In the case of spontaneous remission, the majority of reported cases have eventually been attributed to either an
inaccuracy in the initial diagnoses, so there was no cancer to begin with, for example—or fraud.
A handful of genuine examples remain. And they remain a mystery as well.
If spontaneous remission has happened, it can happen.
If only one butterfly’s eyelash width of possibility exists that your terminally ill child might possibly, though almost certainly will not, wake up in the morning fully cured, does this alter what you might tell your own child if they asked you for the truth?
My feeling is, as long as something—anything, medical or otherwise—is within the realm of possibility, then there is hope.
Even if that for which we hope never comes to pass, I believe the experience of existing within a place of hope is an essentially,
elementally
richer and more valuable life experience than one in which all hope is entirely depleted.
In the early nineteenth century, a British explorer named Ernest Shackleton posted a notice in a British newspaper calling for men to serve as crew on his ship,
Endurance
, which he intended to captain through a trans-Antarctic expedition.
Twenty-eight men enlisted.
Endurance
became trapped within drifting ice floats and was ultimately frozen in place. The crew soon realized they would remain frozen where they were until the ice melted, and this would not happen for nearly a year.
Shackleton managed and motivated his ice-bound crew for several months, until the ship was crushed by the ever-compressing ice.
Shackleton then led the men across the ice, propelled by their sled dogs. But the unimaginably brutal climate made reaching land impossible.
Ultimately, the salvaged lifeboats were loaded and these were used to deliver the malnourished, nearly-mad-with-despair crew to a small, bleak, barren island—more of a large rock, really—named Elephant Island. Here, the lifeboats were turned into shelters.
Shackleton had managed, against all odds and with seemingly no cause for any hope, to save the lives of his crew—but the land on which they now found themselves was entirely remote; rescue was not within the realm of possibility.
Taking his three strongest men with him, Shackleton set out to reach occupied land, where help could be found and the men remaining behind on Elephant Island could be rescued.
Although it would require seemingly superhuman navigational skills, impossible endurance, and then miraculous good fortune, Shackleton did reach the safety of land; and though it required not one, not two, but three separate attempts by ship, Shackleton would, four and a half months later, return as he had promised to Elephant Island and rescue his crew.
Despite the overwhelming odds against any of the men surviving a disaster of this magnitude, not a single crew member died.
These men had spent months living inside wooden lifeboats, which had been turned upside down into “shelters,” on an island where there was not a single source of food and absolutely no reasonable expectation for rescue.
The single thing these men had was the word of their captain, who had promised to return for them.
So they subsisted on the reserves of their own body fat and just the smallest remains of food from their long-sunk ship.
And hope.
Hope kept them alive. And Ernest Shackleton saved their lives.
When he returned to England, he was knighted by King Edward VII.
If a photographer had not been among the crew and if these photographs had not survived, this entire story would be so absurdly against-all-odds that nobody would have believed it.
But the story of
Endurance
has always been for me the most perfect example of what hope is, what hope can do, and how there are times in life when logic and reason and probability must be recognized, but then ignored.
Miracles do happen.
You must believe this. No matter what else you believe about life, you must believe in miracles.
Because we are all, every one of us, living on a round rock that spins around and around at almost a quarter of a million miles per hour in an unthinkably vast blackness called space.
There is nothing else like us for as far as our telescopic eyes can see.
In a universe filled with spinning, barren rocks, frozen gas, ice, dust, and radiation, we live on a planet filled with soft, green leaves and salty oceans and honey made from bees, which themselves live within geometrically complex and perfect structures of their own architecture and creation.
In our trees are birds whose songs are as complex and nuanced as Beethoven’s greatest sonatas.
And despite the wild, endless spinning of our planet and its never-ending orbit around the sun—itself a star on fire—when we pour water into a glass, the water stays in the glass.
All of these are miracles.
The gum stuck to the bottom of your shoe is a miracle of stratospheric proportions: that there is such a thing as
gum
, such a thing as a
shoe
, such a thing as a
human being
.
I mean, what are the odds?
Think of the actual physical elements that compose our bodies: we are 98 percent hydrogen and oxygen and carbon.
That’s table sugar.
You are made of the same stuff as table sugar.
Just a couple of tiny differences here and there and look what happened to the sugar: it can stand upright and send tweets.
Because the sun seems yellow and friendly and we only notice the air when it stinks and we take all of this
existing
business entirely for granted, it’s easy to forget or not even consider in the first place, not even once, that the fact that we exist, that we are a
we
at all, is the very definition of a miracle.
Miracle: an effect or extraordinary event in the physical world that surpasses all known human or natural powers and is ascribed to a supernatural cause.
It is simply a miracle that you woke up this morning.
And it is a miracle that, in billions of miles filled with blackness and rocks, you were born.
And if, against the odds of solar winds and burning stars and emptiness that extends for lifetimes, any single person could defy explanation and have the audacity to
be born
, then surely there must be at least one half of a tiny, tiny chance that the disease that is scheduled to kill your child will go entirely missing by morning.
While this may be so unlikely as to essentially be not within the realm of possibility, it is within the realm of possibility, but just.
“Daddy, am I dying?”
“Mom? Am I gonna die?”
“Yes, my love, the single immovable fact of your life, the only thing anybody—me or all the doctors in the world or anybody who is an expert in anything and everything—the only known certainty about your life is that it will end. Yes, my love, you are dying. And so am I. And so is the doctor. Life is a process of dying.”