Maybe I could slow down a bit. I was keen to move from the reactive to the reflective space as I tried to learn more about my disease and how its course might be interrupted. It made good sense to meet the elusive Mr Augusto. The plan was for a coffee break at his house on the evening of 9 June. I did not have a proper agenda, just a keen interest in what made him what he was. What sort of DNA did it take? When I pulled up to the house, I saw things were a bit disheveled, maybe keying a bit of apprehension, but nowhere near enough to worry. A lady let me in without saying a word. Kind of strange, but ok.
And there he was, just as I expected from the pictures. The place was cluttered, littered with medication bottles and various stuff. He turned off the television and invited me to sit down.
The first exchange was not what I anticipated. Something was wrong, a mis-understanding was in play. First off “what is wrong with you?” I got confused, in all of the emails, I must have told him that I had AMN. Didn’t I? He knew about my disability- he saw me struggling, what was the trouble? And, it almost seemed like hostility was in the air. This needed to be quickly sorted and defused.
“I have AMN, the same disease that your son had.” That did not get it done. He paused, then asked “you are an investor, right?” Wow. Now my thinking was even more deeply muddled. After some give and take, I came to understood his take on things: I had acquired a large amount of the Oil and in his words, “was speculating on it”; peddling it to desperate patients. Yep, he thought I was black marketing the Oil for profit. This was a poor start to things and not where I wanted to go.
I had work to do. I tried to make the legitimacy of my project clear. I told him that I was legally buying the Oil, and bringing it into the U.S. for myself, with the blessing of U.S. Customs and FDA. All that I wanted was to meet the man who invented the Oil.
It seemed to work. He relaxed and offered me a coffee. He said something to the lady in Italian, and she went to work at it. The coffee was typical Italian style- very hot, very concentrated, small cup.
It was better now. We talked. He took me into his office and showed me a book that he was working on. It had everything, beginning with how he met his wife, Michaela, and it went from there. All about how he decided that erucic acid should work and why, and his struggles to get someone to make it. Importantly, it had a lot about Lorenzo as a person. What he was like, and how they adapted their lives to take care of him. We talked into the night about the challenge of getting the oil to the people that needed it.
It was a great night. I loved every minute of it. I left inspired and wanting to make a difference. How? That was the question. I was on the precipice of something big. I could feel it, but had no idea what it was, I could just tell.