We’ve started a difficult discussion in our household about the meaning and implications of disability. Specifically, if the latest of Richard’s adventures in brain cancer, the catastrophic hematoma that sent him over the mountains in an ambulance to the hospital in Denver two weeks ago, left him disabled. It’s hard to even use the word in the context of the guy described by a friend as “so ____ smart that even with half his brain, he’s still smarter than the rest of us.”
He is. But… now daily activities take him longer than they used to–a lot longer, sometimes. It’s hard to pin down exactly what’s different just because Richard is so smart and creative. He’s slower to synthesize a mass of information; he has a harder time tracking and sequencing; he’s more easily distracted, more likely to forget entirely what he was doing before something else caught his attention. Which explains, for instance, how he set out to take the compost out today, detoured to look for a favorite pair of work boots (which turned out to be in his shop) and ended up bagging up some of the mound of tumbleweed carcasses that have blown into our yard this dry, windy winter.
When he finally came in for lunch, he had his boots and proudly reported that he had gotten some weeds broken up and into garbage bags. What about the compost? I asked.
“The bucket is on the kitchen counter,” he said. But it wasn’t. So off he went to look for it, and got distracted… I eventually found the compost bucket by the garage door, in the opposite direction from garden where the compost pile lives.
We used to divvy up the running-the-household chores pretty evenly, from the accounts, which Richard does, to the cooking, which I do most of. (He tends the sourdough “farm” and bakes our bread, like the gorgeous sculptural whole wheat boule in the photo above above.) Now, he does the accounts, period. He’s anticipating getting back to baking, but his sourdough farm perished by accident, so he’s tending a new farm. I do most everything else.
Still, the sculpture ideas he’s thinking about just blow me away, and he has insightful comments about any topic that comes up. He’s a bright and creative guy. Just slow at the practical stuff right now.
The dictionary defines a disability as “a physical or mental condition that limits a person’s movements, senses, or activities.” Then there’s the connotation we so often apply, consciously or not: to have a disability is to somehow be less–less competent, less smart, less whatever. Ouch.
Why even bring up such a difficult and painful subject? Because it’s pretty clear we’re going to need some help to help Richard recover. I’m convinced he will get back to work on his gift: abstract and functional sculpture using local rocks, stone, and wood. (That’s one of his functional pieces in the photo above, a granite basin that could also be a beautiful sink.) Sculptures that people walk right up to and caress with a smile on their faces, sculpture he calls “ambassadors of the earth,” work that offers an invitation to heal our sometimes tortured relationship with this living planet.
How long his recovery will take, I don’t know. I do know that I can’t handle most everything the two of us used to do together, plus care for him, and still have the wits and time to write.
Hence our discussion: if he can stand being labeled “disabled,” we could apply for a small monthly pension. It wouldn’t be much, but it would help.
There’s a huge irony in talking with Richard about this: If he can engage in the discussion, how can he be disabled? It’s one thing to be intelligent, analytical and wildly creative; it’s another to handle mundane, everyday chores.
The larger question for me is this: Will the label itself and its implication injure his spirit? He’s decided no. I’m not entirely sure.
So we’ll continue the discussion, holding hands, holding each other’s hearts, walking this journey one step at a time the way we do everything else in life: thoughtfully, with love.