They were a happy family who moved to the U.S. after living for awhile in the Comoros Islands. Lorenzo began having behavioral problems, so they took him to one doctor after another, trying to get a diagnosis. Nobody seemed to know what was wrong with him.
Finally they found a doctor who did the right kind of tests. The doctor sat the parents down in a quiet room and gravely told them the diagnosis: “Your son has a fatal disease. He might live another two years, but during that time, the white matter of his brain will slowly liquefy, and then he will die. There is no treatment for this disease. Nothing can be done about it.”
They were at the best facility they could find. The tests were thorough and extensive, and there was no mistake: Lorenzo has a disease called adrenoleukodystrophy (known simply as ALD).
What would YOU do if it happened to you? They were, of course, devastated by the news. No matter how well-schooled you are in the science of determination, news like that will knock you down, at least at first.
Very little was known about the disease, but Augusto (Lorenzo’s father) started reading about it. He found the progression of the disease unthinkably horrible. Kids go blind and deaf, become autistic, lose their ability to speak, become paraplegic, have seizures, and so on over a period of two years. And then they die.
And nobody knew how to stop it.
Augusto and Michaela were plunged into a black despair that would be hard to imagine. When anyone hits a setback, demoralization is almost always the first response. The only question is, “How quickly will you recover your fighting spirit?” How soon, if ever, will you regain your determination?
The answer depends entirely on how you explain the setback to yourself. If the Odones believed the doctors, they would have given up on their son. They would have felt helpless and depressed.
But they decided there must be a way.
In other words, the setback was: Lorenzo has ALD.
The explanation the doctors gave was: It is a fatal disease without a cure. That’s a demoralizing belief, and makes four thought-mistakes: overcertainty, negative guessing, self-defeating conclusions, and false hopelessness. Many people felt sorry for the Odones because the couple were obviously living on “false hope.” But if you look at the the doctor’s conclusion (there is no cure for ALD) you can easily see it was a premature conclusion. It was not a certainty that a cure was impossible. And it was unnecessarily demoralizing to say it with any certainty.
The Odone’s explanation of the setback was not demoralizing. They believed the cure had not been found…YET. And they decided to help find the cure. Their explanation was the opposite of demoralizing — it was powerfully motivating.
Even if they wanted to do something about it, most people would not because of another set of demoralizing beliefs: Who am I to think I could help? I’m an ordinary person. How could I find a cure if all these doctors and researchers haven’t found one? These thought-mistakes would prevent most people from trying. They would give up.
But the Odones knew better. Augusto said to Michaela, “What did we do when we first arrived in Comoros? We read about it. We read about their culture, their history, their laws. That’s what we need to do now. We don’t know enough about this disease.”
So they went to libraries and started reading as if their son’s life depended on it. They stayed up late and got up early. They read books on biochemistry, biology, neurology. They read microfiche, pursued references, talked to researchers, and followed every clue they could find. They shared with each other what they were learning and what ideas they came up with, they argued with each other, and they kept trying.
Why did they keep trying? This is the crucial question. They kept trying and stayed motivated because the way they explained their setback to themselves set them on fire with determination and commitment. Please remember that. When you feel demoralized by the setback, look at your explanations. Use the antivirus for your mind. Your motivation depends on it.
They discovered several researchers in different places working on the disease, but they worked in isolation from each other. The Odones thought they might speed up the process of discovery by funding a symposium, so they did. They got all the experts together in one room to discuss ALD. Maybe pooling their insights would help them find a new approach.
The Odones were trying to find a way. And they were urgent because the clock was ticking. Every day their son was losing more myelin (the protective sheath that covers the neurons in his brain). Lorenzo was going blind, couldn’t speak, and was no longer able to feed himself.
At the symposium, in a conversation between scientists who each brought different pieces of the puzzle to the table, they concluded a particular oil might help. The Odones tracked down a manufacturer who could make it, and tried it on their boy. Their goal was to keep his level of long-chain fatty acids low. Those were the acids destroying his myelin.
The oil helped some, but not enough. They did more reading and found another line of possibility. They needed another oil extraction of a different kind but it couldn’t be made legally in the U.S. So they found a chemist in England who could do it.
And the combination of the two oils achieved the goal! The level of fatty-acids in Lorenzo’s blood became normal. The oil is now used as a treatment for boys with ALD (girls don’t get the disease) and if it is started early enough, it stops the disease completely in many of them, allowing them to lead normal lives.
Lorenzo, however, did not return to normal. He had lost too much myelin. But he recovered some of his functions (including his eyesight) and is now 28 years old.
Have the Odones given up? Of course not! They started The Myelin Project, aimed at finding a way to re-myelinate neurons. It has already been successfully done in dogs.
The movie is one of the most inspiring I’ve ever seen. If you would like to see a demonstration of determination in action, if you would like to see a real-life example of the power of persistence, if you would like to put the difficulty of your own goals into perspective, watch Lorenzo's Oil.
Adam Khan is the author of Cultivating Fire: How to Keep Your Motivation White Hot, Principles For Personal Growth, and Slotralogy: How to Change Your Habits of Thought.