C4E I'm really glad you are posting here, especially as I am more detached but watching my husband's condition appear to get worse in many ways. How many diseases have started out so poorly understood or misunderstood, surrounded by taboos and stereotypes?
Two things you wrote really struck me. (Actually many but two I will point out.) First: the everyday way of talking. This was the same for me. My husband had a very good sense of humor. We were always joking. We were even always singing jokes to each other! As soon as this hit his sense of humor went from this very special gentle humor to cat videos on YouTube. Even when I have tried to bring in humor to the situation not as a way to reconnect but to help us both through it, he seems unable to participate. He often appears incredibly grim.
The second: "I can't." I have read this over and over again on these threads. People saying, "I have to leave." "We have to get a divorce." "It has to be this way." Some people will describe the eyes as well, looking like they are trying to communicate: I can't control this. I have personally seen this. It is scary and heartbreaking to watch, and I agree it is this uncanny experience that often leads me to feel, even when my husband has treated me the worst, that it is not right for me to vilify him, because something is very wrong here.
When you read about MLCers with more clarity, like your husband, it also shows there is some awareness that something is not right -- that something is going on beyond their control. I know one poster's wife knew she could not feel empathy.
My husband's grandfather, great grandfather, father, and sister all did this. A good way to research, I believe, would be to examine the children of MLCers. I think many would participate in a study having watched the incomprehensible behavior of their MLC parent. Periodic physical and psychological tests through midlife could reveal changes to brain function snd chemistry, hormone levels, and/or psychological process.
When this all started my young science-loving son kept saying, "Maybe daddy has a brain parasite." We have a book on all variety of animal parasites and there are some that can turn the infected into a zombie acting in the parasite's favor. It can even be so sophisticated as to create a multi-stage series of behavior to transport the parasite from one species to another or one setting (e.g. land to water) to another. Studies about toxoplasmosis show that this common, relatively benign parasite may have a significant influence on entire populations of people.
I was floored recently when I met a neurologist and homeopath who both, unprompted by me, told me that my husband may have a hereditary brain parasite. I had never heard of this and it was something I meant to look into again. One of the most bizarre things about my husband's family history is that some of the people who had severe "MLC" were not blood relatives. How can this be?
One reason I also believe this is poorly studied, in addition to the affair, is that men are afflicted more than women. Just anecdotally, it seems from what I see on the forum that a LBS man is more likely to have some level of acknowledgement/support from the family that something is wrong. Even when my SIL had MLC, the family got more involved. Many of her family members actively attempted to intervene. But when a man has an affair and traumatized his once-beloved family and even chooses bizarre or untrustworthy affair partner, the family and professionals will often refuse to intervene.
My MLC H and I went to two therapists after bomb drop. Both of them heard a well educated person (me) insist over and over again that this was a sudden and radical personality change. These are both two hallmarks of mental illness. Yet because of the affair, neither referred my husband to a psychiatrist. Neither asked him what medications he was on, or if there was a family history of depression or mental illness. They simply looked at this as a choice, when I feel quite certain if the roles had been reversed, they would have looked at the medical aspect much more closely.