Family in the picture again: Michael is here with granddaughter Kendra, and they’re zipping around doing things like installing the new fire extinguisher Brooke had just bought as a result of his doing the emergency responder training course, recaulking the kitchen sink (so as not to be a harbor for nasty microbes), and cooking Indian food. Today’s main enterprise has been meeting with someone from the Rehab staff to explore our house to see how it needs to be modified: how wide do the door openings need to be for a slick electric wheelchair, what about a wheel-in entry to the shower, how to rig up a sling to get into and out of bed. It’s quite amazing to see the house we’ve lived in for thirty years through new eyes, when you’re thinking about what makes a house a home—it’s not about décor, it’s not about impressing guests with elaborate dinner parties, it’s about feeling protected when you’re so vulnerable and wanting other people who might be uncomfortable about weird assistive equipment to feel at home with you there too.
But while we know that it’s necessary to prepare for the most constrained future, we also know that’s what’s the case at the moment may not be what’s the case in the long run, or the very longest run. One of the things we like best about the attitude of this rehab unit—an excellent place, if you need to be in such a place—is its capacity for very long-range thinking and refusal to take what’s the case at the moment as the final word. It is difficult to think about wheelchairs and lifts and voice-activated computer keyboards, but better to think about them now and discover that they may not all be as necessary in the future than be taken by surprise.
This has led us to think about how to communicate to you all out there with both realism and optimism, a delicate blend. Your optimism is a huge positive force for Brooke, but we know you can also read between the lines and see that while there’s real progress, it is slow. There’s a little lung infection at the moment, but likely under control; this slows things down but the general trend is very positive on almost all counts. Besides, he dressed in real clothes today for the first time, his nice soft fleece pants and favorite purple shirt. He looks as handsome as ever, just like himself.
Hard things happen to other people too. We were thinking about Alzheimers, which steals so many—this paralysis is like the obverse, all mind, no body, instead of all body, vanishing mind. They’re both hard, but in many ways that must be harder for those around who love them too.
Brooke says again that he loves hearing from people on the blog. I’m amazed at how many people still thank Sara for starting it—and we both thank her too. She’s is Seattle and so not as close to the source of information at the moment as she was earlier, but she’s still here in spirit (and will be back in actuality soon).