Yesterday morning, John and I packed up our hiking gear, dressed for a 10-mile-plus hike and drove 120 miles northeast of Charlotte to Pilot Mountain, NC We’re going hiking out west in October and could use a tune-up, took note of the beautiful weather forecast for the day and wanted to get a jump on the surgery I’m scheduled to have a week from tomorrow. There were a lot of reasons to go yesterday.
Just as John and I pulled around the bend of the drive leading into the park office lot on the mountain, his truck shuddered, all of the console lights came on, and the message board announced a transmission fault. We were eight hours from sunset two hours from home on a Saturday with a two-year-old truck that wasn’t fit to put back on the highway. So our 10-mile hike turned into a 10-minute stroll in the woods behind the office as we waited for help to arrive. A little after 1 p.m., we found ourselves scrunched together in the back seat of a tow truck with 266,000 miles on the odometer, the driver and his wife up front with a pack of Camel Lights and a Bojangles paper bag between them. We arrived at our dealership just over the South Carolina line by 4 and pulled a brand new truck off the dealer’s lot into our driveway a few minutes before 5. We traded in our mountain odyssey for a game of tennis on our neighborhood court and afterward were treated to dinner by his parents, who felt sorry for us. All in all, a less-than-wonderful but still halfway-salvaged day. As we unwound at the end of the night, we reminded each other that the drive up to Pilot Mountain, at least, had been fun. Our road trips always are; as John likes to say, “it’s the journey, not the destination, that matters most.”
I’ve had many people remark, phrased in all different ways, about how T’s diagnosis has changed me or how they think this fight into which I was thrust will make me stronger. How all my – our – efforts to help find an answer for Batten disease and save my sister can give me a fuller life. I’d call this road we’re on – this fight we’re fighting – a journey; I have before. I’ve marked each anniversary of T’s diagnosis on my blog for the past three years, and I do understand the path that we’re on, though some days, that path is more well lit than others. But unlike the day John and I spent together yesterday – a day characterized by disappointment and misfortune but not all bad by the time sunset rolled around – I’m not sure I’ll care so much for the larger journey if I can’t reach the desired destination. The destination is the cure; the rest is all icing. But what good is all that icing if you can’t eat the cake, too?