Moment of levity – Using a wine bottle as a mic and lip syncing As Time Goes By, lounge singer style. It got a nice smile out of him.
Moment of reality – Discussing life insurance wishes. Never fun in the best of times. Stingingly painful with the fears we currently share.
Steve was coming off one of the most exhausting days since diagnosis. My plan, no, my dictate, was that he would spend the entire day resting. His sleep the night before had been brutally interrupted by a fever so I didn’t so much as peep as he snoozed until nearly noon.
He woke up. We talked. And then he said, “I want to see my mom.”
Seeing mom isn’t the easiest thing to do as she lives an hour away. I drive (he stopped driving shortly after diagnosis) and he sits, but it’s still draining on him. I already knew the answer to the question, “when?” He meant today. He meant as soon as possible.
And so we got in the car about an hour after he woke up and drove. He still manages my route by the way. That bit about being good at traffic is still true. The part of his brain responsible for navigating around sigalerts and congestion must be in some safe corner of grey matter, neatly protected by intricate synapses. He’s been doing traffic reports on air for over 20 years. Who knew that would be a source of strength for him?
Steve has always been the driver of the two of us. If we went somewhere together, he drove, whether it was my car or his. Long trips. Short trips. Didn’t matter. It was A Thing, one part control, one part just loving being behind the wheel. Now that he’s no longer driving, I figured his critique of my driving would be pretty constant. We have completely different driving styles. And he’s a pretty vocal side seat driver. I’m either going too fast or too slow. I’m not going around annoyingly slow trucks fast enough. I’m braking too hard or too early. And right now, this critique doesn’t bother me in the least. It’s a point of humor and banter for us. It’s also how I know he’s still there. If he’s aware enough to tell me to hurry up or slow down, I know my Steve is sitting by my side.
The critique is lessening, or has a softer tone than it used to. I don’t know if it’s on purpose, or if it’s another part of his progression, or if I’m slowly adapting my driving to suit his preference, or all of the above. It brings into sharp focus how tightly entwined we are. I’m trying to see it that way, instead of in a negative light. But I’d be lying if I said it didn’t worry me.
Do you know about Spoon Theory? Click the link to read about it (I highly recommend it as a primer for the healthy to understand the sick), but in summary, it’s a way to measure out your energy and your daily choices to ensure that you don’t operate in a deficit and still live a functional life. Your daily energy is symbolized by spoons. You’re allotted a certain number of spoons every day as a measure of your energy and ability. Various activities – chores, eating, dressing yourself, doing laundry or dishes, driving – all subtract spoons from your daily total. The trick is to spend your spoons wisely and manage your health in a way that doesn’t rob you of spoons.
Steve’s spoon count is smaller every day. While the trip to see his mom was necessary and good (she was so happy to see him), he was over spent by the time we started back for home. He still had to eat dinner, take his meds, and because he wanted it, spend a little time with Larry at the end of the day.
Managing his own spoons is something new to him. And I’m trying to give him as much personal control over his life as possible. So becoming over tired is common, and sometimes even a little dangerous as it puts him at risk of seizures. That hasn’t been an issue for us yet, thank the heavens, but it’s something that looms on the horizon.
One of our angels dropped off some of her art yesterday. It’s one of my favorites of her recent watercolors – a sunset-backed Joshua tree. Explosive and controlled. It was food for the soul. Much needed, and much appreciated.
We’re back into appointments today. Heading to Santa Monica for a new MRI.
We have been so totally bowled over by all of your notes of support and love. Please know we’re reading them all, sometimes repeatedly, and that we wish we could respond to each of them. They’re our biggest source of hope, so please keep them coming. If love could shrink a tumor, he’d be cured by now. I think we should keep trying, don’t you?