We are a family of readers. The librarians at our local library told us we were the first ones they had ever seen actually reach the insanely high limit of (many 100’s of) items you are allowed to check out at a time. Weekly library trips were just a part of our routine. My daughter read over 50,000 pages more than the second place winner of a fifth grade reading contest, and it’s commonplace for her to read a book of more than 1,000 pages in a day. Both she and Kendall are the fastest readers I have ever met (and have astounding recall). We have more than 20 (!!!) bookshelves in our house. One of Kendall’s favorite past times was recommending books to other readers, and the main reason he went each year to comic cons was to attend the author panels. And if you know me, I have ALWAYS had at least one book I’m reading, usually several at the same time, of many different genres. If I had downtime (even in places like the carpool pickup lane, or when I would break for lunch), I was probably sneaking in some book reading. I’ve been a part of and even hosted several wonderful book clubs (one that will have their monthly meeting tonight, come to think of it).
So you will realize how out of character it is for me to say that I have not been able to simply read a book for pleasure in about 18 months. That’s right, I still can’t. I’ve tried, several times. My brain won’t focus, isn’t able to escape my current reality and dive into any kind of fantasy world. I even struggle with doing much TV or movies. It’s like that part of me just….broke. Which makes it hard to fill those long hours after the kids are in bed, when sleep completely eludes me, with anything that can help my brain simply unplug and unwind (especially since I can’t play the piano when they’re asleep).
Sometimes I’ve been given the impression that people assumed those many days and weeks and months in the hospital were spent with a lot of empty hours of sitting around, probably reading or watching mindless television or maybe talking with friends or the kids on the telephone. Especially when Kendall wasn’t even conscious. Not. even. close. There WAS no downtime. Literally the only time I sat back for even a few moments was the few days my mother-in-law was allowed to be in the ICU with me, when I consciously tried to give space for her to be able to interact with her son and ask questions of the medical staff (all while I remained hyper-vigilant, ready to jump up at a moment’s notice if I felt I was needed).
That’s a good word for it, hyper-vigilant. I couldn’t ever let down my guard. Literally every minute was spent being right there with Kendall, watching so carefully (and many times catching things the medical staff had missed), speaking to him, trying to get him to eat (at least before the ICU, when he was finally put on a feeding tube that his body kept rejecting), sitting in on rounds and also speaking with SO many specialists and doctors and other medical staff who were constantly in and out. I couldn’t turn on a TV because it was too overstimulating for him, and there were always people coming in with updates or questions. So many therapies to help with, numbers to watch, notes to take. I could not leave the room, and I usually didn’t have any cell service in there. I was completely cut off from the rest of the world, existing minute to minute, living through non-stop trauma.
Except for the one book I did read. During that last hospitalization, Kendall was so very sick from the very beginning with the full body radiation and other pre-conditioning, even before the bone marrow transplant and all of the complications that came afterward. He was certainly not up to reading, and the medical staff kept emphasizing how important it was to keep his morale up (difficult when he felt so terrible, and was not allowed to be on any of his regular depression or ADHD medications), to keep him engaged and “fighting.” He refused any offers I made to read aloud to him, though, or to try turning on the TV, etc. (Except for allowing us to watch those few episodes of WandaVision on Fridays.)
Which led to my idea to bring Brandon Sanderson’s new book, “Rhythm of War” (book four of The Stormlight Archive) with me when I would come during visiting hours. Brandon Sanderson was Kendall’s all-time favorite author, and he had read that book when it first came out, during one of his previous hospitalizations. Remember that great recall I mentioned earlier? Those Sanderson books are absolutely enormous, more than 1,000 pages long, and enough time would pass between the publishing of each one that I would forget a lot of details about the numerous characters and intricate plot lines that had happened in the previous book(s). With the other three I had had Kendall give me a reminder overview first, and then throughout my reading I would constantly ask questions like, “Remind me why ________ was important?” or “Who is ____________ again?”
So when I couched the idea of reading “Rhythm of War” aloud to Kendall there in the hospital, saying I would need his help remembering and keeping track of things, it worked! When it was a service Kendall would be performing for me, he was willing to put forth the enormous (and painful) effort it took to engage his brain and interact back and forth. He couldn’t tolerate much at a time, but over those two months I got up to page 551 (of 1230).
My bookmark still sits in page 551. I haven’t been able to bring myself to finish it, on my own. It was the last book Kendall read completely on his own. And while I don’t know all of the details or why’s, I do know that he felt a close affinity for one of the characters from that book. I’m almost afraid to learn why (so afraid he’s going to die, too….). So will I ever be able to read books for pleasure again? I hope so. Will that part of my brain eventually heal? Again, I hope so. Because I wouldn’t mind a break and escape from so many lonely, empty hours with nothing but my thoughts to keep me company.
