I wrote this post on Thursday evening, at Cadillac Mountain in Acadia National Park at sunset. A good place to contemplate…
It’s been a perfect day in Maine.
Julie rented a bike and we took it and the trike along the carriage roads in Acadia National Park for more than four hours. We followed the gravel path as it weaved in and out amongst the conifer trees along the pristine Eagle Lake and Bubble Pond. We biked about 12 miles total, and except for the first long hilly ascent that Julie had to push me up, I managed just fine.
Now, we’re sitting on the west-facing top of Cadillac Mountain, waiting for the sun to set on our last night here (and yes, I am that girl with the laptop). It’s breezy, the perfect temperature, and we’re pleasantly pooped by all the exercise, wind, and sun.
Nevermind that we looked ridiculous (and I’m sure attracted some pity from our fellow sunset seekers) navigating the walker over rocks to score this view. We took our time, like serious rock climbers discussing the best route and approach – but probably laughing more.
ALS is not supposed to be like this. From everything I’ve heard and read and people I know, it’s almost never like this.
It won’t always be this way. A friend with ALS is being removed from life support tonight at 10pm because that’s when the surgeon can remove his organs for donation. So my thoughts are with him, his wife, and all those who love him.
My thoughts are also with Sarah who wrote this excruciatingly raw and honest blog post about how tired she is of living with ALS after 5 years and being a burden on everyone. I intimately know what she means, even now while I’m essentially independent.
I’ll be there – too soon – but I’m not there now. I’ve been able thus far to put ALS in the corner. It’s an aggravation, I need more help than I’d like, it’s incredibly inconvenient (usually making an already frustrating situation worse), but it’s not calling the shots. Yet. And so I am deeply grateful today. I will sit on this rock with my oldest friend in the world and bask in the freedom to witness the miraculous scene stretch out at our feet for miles.
I am consciously stockpiling these memories…for what? So that when I’m bedridden, unable to speak, or eat the seafood we’ve been stuffing our faces with, I can recall them and not be (as) bitter? Leave my friends and family with positive memories to go with what is coming next? Or am I just living, like everyone else up here?
Honestly, it’s not a trip I probably wouldn’t have taken if not for ALS. I would have been working for one thing, and wouldn’t have had the vacation days (Julie is a teacher and has summers off). But more than the practical, I probably wouldn’t have made the effort. I wouldn’t have appreciated how little time we might have left. I would assume we’d have years to hang out and do fun things. We’d talk about what we’d do when we retired, got out of debt, finally weren’t so busy. I’m suddenly more appreciative for the families who are up here with us – they’re taking the time to make the memories too. I’ll even make a soft spot for the family that just sat down right in front of us…
None of us are promised more than the present moment. And so I will go enjoy this one.