Such a Hard Thing

Such a Hard Thing


If it were not for hugs, I would not know what to do to preserve the relationship between my husband and myself. Sometimes it is all we can do. We have to quit talking and hug.

We often hit an impasse when he attributes his symptoms to something other than Lewy Body and I remind him that LBD is the most likely cause of most all his symptoms. “That’s just a name. Nobody really knows what it is, what causes it”, he will tell me. Whereas he is onto something big that may prevent LBD and other dementias. It’s something that God wants him to pursue, record and publish.

He wavers. Every now and then he wonders if he has heard correctly what God is saying to him. He will even think that LBD is something God is using to get his attention and correct him in his ways. He will get very introspective and cry. He might even conclude that God wants him to quit trying to convince others and trust instead. But he cannot quit thinking, researching, striving, so the next time fear or anxiety strikes he is right back in the game. There is always a new plan to present to me first, then to whomever he can get to listen and perhaps act.

One morning after requesting a serious talk, he told me that he would never hold it against me, or others, for not understanding. It was his fault for not being able to explain it well enough. I told him it was not a matter of understanding, it was a matter of believing. To him, his theories are facts that others should be able to understand. To others, his theories are just that, theories. And they are not the most likely explanation for what is happening to him.

He often suspects that I have been leading people to view him as unreliable in his ability to think and reason. I get requests to not do this, and especially to “change my song” when talking to him. He gets frustrated with me but is not angry, just obsessed and persistent. For that I am thankful.

He is seeing his illness as a very spiritual experience. He hears God speaking through it, and I agree that some of the things he hears are right on target. He has changed his mind on some important issues. But after he feels he has gotten the lesson and accepted God’s correction, he then looks for physical healing and wonders why God is withholding it. Then doubt, guilt, depression and self pity come rushing back in. He is more in touch with his feelings than ever before in his life. He cries nearly every day.

He is not crazy. He talks knowledgeably about many things. It’s his conclusions and his obsessions that make people question him, and they would do that even if I told them nothing.


A Wakeful Night


Yesterday, the day of the husband’s doctor appointment, I wanted to encourage him not to be weird, not to ask the doctor to read his reams of research printouts, not to tell stories about Jimmy and Rosalyn (the Carters), not to talk about his wonderful brother who takes him seriously, and the list goes on … But when I sat down hoping to have this conversation with him he was all about his difficult night in which he lay awake from 10 pm to 3 am, hearing from God – that it was his time to write a book and share the secrets that have been revealed to him, mostly about magnesium. The title is already decided: “Wake Up and Smell the Peanut Butter”.

We did have a good talk, and we prayed about the appointment and everything else that we pray about.  I really wish he would write about his experience. That is not a crazy idea and would be interesting, but he has challenges that make it difficult. I ended up suggesting that he dictate his writing and I offered to edit it for him. He had wanted to ask that but was dramatically grateful that I offered before he had to ask. He also asked that I co -write his book, telling the story from my point of view, like Jimmy and Rosalyn did. I think he said that was God’s idea too.  (Another thing I wonder at – he emailed Linda Ronstadt to tell her the problem with her voice going away was because of magnesium deficiency.)