Back In the Upside Down
Mr. J Makes a Request
“I wish we had a report,” Mr. J said. I had just returned from a work trip. “What kind of report?” I asked. “You know,” he said, twirling his index finger in a circle. I waited. “A report. From. . . the. . . that guy.” “From the Doctor?” I prompted. “Yeah,” he said. “I’m pretty sure we do have a report,” I said, reaching for the computer. I located the World Renowned Medical Center (WRMC)’s patient portal and logged in. “Yep,” I said. “Here it is.” I handed him the laptop. He read it like it was the first time he’d seen it. Even though we reviewed it with our Doctor. And then he reviewed it again at home.
How It’s Going
Here's the overview of what it said. Mr. J is a delightful man (I’m not making that up! The report really did say he’s delightful!) in his mid 50s, presenting with concerns about a degenerative brain disease. Neuro cognitive testing was performed. He does have some trouble with some parts of his thought process but does well in other areas. While there has been previous neuro psychological testing performed, the raw data is unavailable. However, it appears he is performing as well or perhaps slightly better than he had done in past testing.
What is Going On?
Our double board-certified doctor told us Mr. J was not degenerating on the schedule that he expected. None of us are sure what is going on. (But Mr. J and I are certainly not complaining about it!) There are days when Mr. J cannot remember what is on the schedule, but he is getting better at checking the calendar. There are also days where, for long stretches of the day, he seems just fine. “See you in a year!” our Doctor said. “Enjoy every day.”
Mr. J - On a Continuum
Two incidents which argue Mr. J is not fine. First, at Christmas, Mr. J made an insensitive remark about a gift given to him by his nephew. No one said anything at the time. Then his mother texted me to tell me how upset the nephew was by the comment. Honestly, I had to ask, “Which comment?” because Mr. J has never had much of a filter when it comes to saying what he is thinking. Also, I am, perhaps, more used to Mr. J’s unfiltered and therefore insensitive comments.
Second, our dear friends A and D did not tell us about their son’s plan for a surprise proposal and engagement party, for fear that Mr. J might forget it was a secret (a valid fear). I was actually relieved they didn’t tell us ahead of time. Because I didn’t want Mr. J to ruin it, either. And, if asked, Mr. J himself wouldn’t want to ruin such a lovely surprise. He would mean it when he said it, but odds are even he still would have forgotten that just before he blurted it out.
Enjoy Every Day
So now we are back in the Upside Down. A mystical, magical, and sometimes scary place where I have no clear path - no one right choice. I am working on following our Doctor’s advice and enjoying every day. Or at least taking time to be grateful for our days together. I accept that Mr. J still needs between two and four hours of sleep each afternoon in addition to eight to ten at night. I work on reminding myself he is here. I work on being grateful for this day, this time, this moment.
Beautifully written as always. The slipperiness of what you’re going through is so hard, there’s nothing to grasp a hold of or come to terms with as it’s always shape shifting. But the advice to enjoy everyday is one we should all take, as we actually don’t know what’s around the corner 💚
Thank you for sharing your experience. I also have a delightful husband with a degenerative disease (who has also never had much of a filter but perhaps slightly less now too 😉).