Accepting the unacceptable
In life, Bertrand had a way of teaching without words.
I find that through his echoes, Bertrand continues to teach.
Of course, there are his teachings on biology and medicine.
Patients and family members facing rare conditions often find themselves with both an “M.D. by Google” and a “Ph.D. by Wikipedia.”
Yet for all the technical knowledge osmosed in agony, the deepest lessons are philosphical.
In Bertrand’s memory, I’d like to share what he taught me about acceptance.
And, though I write from the perspective of a parent to a child with a rare disease, any patient in medical peril – or friend or family thereof – may stumble across these very same lessons.
If you find Bertrand’s teaching helpful, I humbly encourage you to make a donation in Bertrand’s honor to the Bertrand Might Perpetual Endowment for Hope at UAB – a special fund created to forever help those that need science in the service of patients.
As a rare disease parent, much of the forced philosophical learning is a result of collisions with hard, inescapable truths.
For instance, rare genetic disorders are often fatal.
Thinking about impending mortality induces a terror so intense that the mind shorts out.
We don’t like to think about death.
Our own death is hard enough to contemplate.
Our child’s death is harder still.
Rare disorders are often “life-limiting” as well, and contemplating any limitation for a child also tends to short out the mind with despair.
But, rare disease parents don’t have the luxury of letting the mind short out, because in every waking moment, the senses deliver a constant reminder of the truth.
The mind cannot escape the senses; it must confront them.
Shock, denial, sadness and anger can delay the confrontation – but not indefinitely.
Parents are often counseled to “accept” as the way out of these emotional states but misunderstanding around what acceptance means delays its arrival.
The meaning of acceptance
Acceptance not a linear process.
It is possible to make quantum leaps back and forth between shock, denial, sadness, anger and acceptance without transiting any emotional state in the middle.
What usually triggers these leaps are micro-collisions with new truths, or had-yet-to-be-realized truths, or even shifting uncertainties about old truths.
After the big collisions around death and limitation, these micro-collisions happen all the time.
Walking past a park to see other children the same age playing happily can spark heartache.
It’s key to distinguish between acceptance as surrender, and acceptance as acknowledgement.
When we’re told we must “accept” a hard truth, there seems to be an implication that accepting the truth is accepting defeat – that accepting the truth is “giving up.”
On the contrary, “accepting” a truth is merely acknowleding the world as it is, rather than the world as we wish it were.
Acknowledge, then act
Bertrand taught me that true acceptance means acknowledgement followed by action.
Once you have acknowledged the world as it is, then you can work toward a better world.
This is just as true for the self as it is for the world:
Once you have acknowledged the self as it is, then you can work toward a better self.
Endless rumination or despair or denial cannot change the world or the self for the better.
In fact, it will make it worse.
After shock and denial and sadness in the earliest days, I acknowledged the mortality and reality of his condition, but I never let that cruel truth interfere with the hope that I might be able to influence his life for the better.
Bertrand himself modeled this principle of “accept, then act” from the beginning.
Acting is doing what you can
Bertrand never seemed to mind what we on the outside saw as his bodily “limitations.”
Yes, it’s true that Bertrand could not do many things we take for granted, like walking or even feeding himself.
But, Bertrand never concerned himself with what he couldn’t do or couldn’t control – only with what he could.
He could smile.
He could communicate that he was hungry, or that he wanted to watch a particular video, or that he wanted you to engage with him.
So, he did what he could. And he did that a lot.
And, these things brought him happiness.
Rather than ruminate on what he could not do, Bertrand simply did the best he could, given the circumstances.
Through this, I learned from Bertrand that a life in which happiness is possible is already a good enough life, regardless of any limitations.
It never bothered Bertrand that he couldn’t walk any more than it bothers me that I can’t fly.
Bertrand could be happy, and so he chose happiness.
When I realized this, I stopped caring that Bertrand would never go to college, or drive a car, or live the life I had imagined for him when he was a baby.
The best you can do, given the circumstances
So, what I learned from Bertrand is that the full form of acceptance is
Acknowledge the world as it is, and then do the best you can, given that world.
In my case, as a scientist, the best I could do was science.
So, I did as much science as I could for him.
I was honest with myself: I knew I was unlikely to be able to do it fast enough.
But, that didn’t matter.
It was what I could do, and it was the best I could do.
When parents ask me what they should do for their child with a rare disease, I remind them to start with what they can do, with the skills they have right now.
Acquiring new skills may be within the realm of what can be done, but it doesn’t have to be.
One of the hardest truths to accept during Bertrand’s life was that life is not fair.
Many obstacles block acceptance, but among the most common is this deep sense that the world is supposed to be fair.
It seems brutally unfair that an innocent child should be tortured by a genetic disease.
In fact, it is unfair.
Sometimes, in response to Bertrand’s suffering, people would tell me that “everything happens for a reason.”
(This statement is true in the most bland metaphysical sense that everything has cause and effect.)
But, the first implication of this morally bankrupt line is that there seems to be some greater good that suffering serves.
Sure enough, sometimes suffering does lead to positive outcomes.
But, most of the time, suffering is just suffering.
And, acknowledging that the world is unfair is the first step toward action that may bring about a fairer one.
Acting toward a fairer world
Shrugging off suffering as “for a reason” can excuse us from any and every obligation to build a better world or a better future or to lessen suffering in the present moment.
“Everything happens for a reason” is an ethical opioid.
Turning to it may provide fleeting relief.
But, it’s like fixing a broken bone with morphine.
The second implication of “everything happens for a reason” is that there is actually a good enough reason out there to account for the misery and suffering of an innocent child.
Try to imagine a reason good enough to make the excruciation of an innocent child somehow acceptable.
And, when you realize that no such reason could exist in the first place, then accept the moral consequences of that realization: we all have an obligation to act as best we can to lessen the suffering and unfairness of the world.
Effort matters more than outcomes
Almost as misunderstood as acceptance is what it means to do the best you can.
You can control effort.
You cannot control outcomes.
As a result, when doing the best you can, effort matters more than outcomes.
In fact, effort is all that matters.
Doing the best you can means giving your best effort.
Giving your best effort in the present makes it easier for your future self to accept whatever happens.
You can’t judge your prior self poorly if you tried your best, no matter what happened in the end.
When looking backward
When you do look backward, if you find yourself wondering whether you did the best you could, compassion for your former self is important.
You must never judge your prior self with the knowledge of your present self.
You can ask whether you did the best you could given the circumstances and given what you knew at the time.
You cannot punish yourself when the rational bets you place don’t play out the way you had hoped.
If you had to act with uncertainty and you made the best choice with the information you had in the moment, then you did the best you could.
When the uncertainties are later resolved, it doesn’t change the fact that you made the best decision you could at the time.
You still did the best you could at the time.
Sometimes, the things I tried to help Bertrand worked.
Sometimes, they didn’t.
Ultimately, nothing I did was enough to save his life.
But, I have no doubt I did the best I could.
And that is all anyone can do.
How to do the best you can
Returning to the full form of acceptance:
Acknowledge the world as it is, and then do the best you can, given that world.
It’s worth asking how you can figure out what “the best you can do” is.
In the end, the best you can do is constrained by many factors: your physical limitations, your mental limitations, your financial limitations, your knowledge, the laws of physics, etc.
Given the complexities involved, it is unlikely in any situation that you will be able to calculate the optimal action.
As Nobel Laureate Herb Simon pointed out, calculating the optimal action may require more time than you have available to make the decision!
So, we have to “satisfice”: we have to search through the options available to find one that is “good enough.”
As it turns out, I learned a good strategy for satisficing from Bertrand.
If you find yourself consumed more with figuring out the right thing to do than doing the right thing, try asking:
What can I do right now?
And, go for the best “good enough” option you can think of in the moment.
You can even couple this with:
What can I do right now to give myself better options in the future?
Will asking these questions yield the best possible outcome?
But, it probably won’t.
In either case, though, it will be the best you can do.
A humble request
If this article in any way helped you reach acceptance, then I am grateful that Bertrand’s echoes continue to do good in this world.
And, I humbly encourage you to make a donation in Bertrand’s honor to the Bertrand Might Perpetual Endowment for Hope at UAB.
Originally published: 23 October 2022 by Matt Might.