While dying is what we are trained to fear, it turned out that bearing witness to the passage from living to dead was not as difficult for me as I had expected. Somewhere in the process, I became detached from the anticipated dread, and engaged in a pleasantly unexpected subject.
To understand this development requires a background understanding. It had always been complicated and difficult between us. From my perspective: one of us was oil, one was water. It was that clear. Todd and I had nothing in common, nor any need to be more than vaguely civil with each other. This was our relationship, with a shared set of parents, really our only connection.
It was bigger than just our discord. I do not think that Todd ever developed the skills needed to facilitate healthy interactions with anyone. Nearly every person coming up in conversation was described in a negative light. In most cases, Todd knew that they were stupid. While it is likely that in terms of raw intellect, Todd was smarter, this was not a good strategy for collecting allies. From my perspective, it was virtually unthinkable that someone, anyone, could become endeared to him. Suffice it to say, I found little in Todd to like. It was my assumption that everyone who knew him agreed.
As the AMN worked over his brain, he got even nastier. He seemed offensive to everyone. I do not think that he became intrinsically meaner as time went on, it seems more likely that through cerebral decay, he lost track of any of the inhibitions that may have helped him keep his opinions to himself.
This complicated his care. It turns out that many of the staff where he was living did not appreciate the name calling and insults. This abuse resulted in more than one eviction. It seemed that everything I knew about Todd was getting magnified as his disease worsened.
It was after he had finished up one hospitalization or another, that mom found Todd a new home at the Wheaton Care Center. Over time, mom and Matt became encouraged by the caring nature of the staff. The times that I was there, I was equally impressed. Nonetheless, this was nothing compared to what I would learn the final weekend I spent there with Todd.
It was weird, all of the staff that I met had only great things to say about him. I remember one guy coming up to me and saying you must be the brother from California. “Huh? How could you know that?” I countered. “Well, yes, Todd used to talk about you all the time- how much he enjoyed it when you come to visit. He always said that he wished that you could come more, but he understood that you have a family, job and so forth.”
Now this was quite the unexpected. Yes, I had visited Todd when I could, maybe 3-4 times in the last year or so, but I never thought that it was for anything more than my own good. I mean, Todd did not seem to even acknowledge my presence. How could this be? I expect that Todd was taking in a lot more than he could share with us.
Then there was the female nurse’s aid that Todd had proposed marriage to: “as soon as I check with my mom, who is my best friend, you know.” Yep, she had Todd all ready to move to Mexico with her and learn Spanish. More weirdness, who could have ever thought?
Now this was quite great. It looked to me like Todd had found peace at the end of his life. I never expected this, thinking that he would die a lonely, bitter man. Oddly enough, if I would not have happened on to these people, I could have never, ever known. This brought me warm feelings towards my brother- unlikely themes that I had never before felt.
This was just one of the unexpected great things that I have experienced related to X-ALD. Strange as it is, in the absence of these discoveries, I do not think that I would have any favorable memories of my late brother. This was good.