An Entirely Different Kind Of Marathon

A year ago or so, when my wife’s Multiple System Atrophy (MSA) really started to take a toll on her and us, one of her close friends pulled me aside and said, “You’ve run a lot of marathons. This is going to be another one.”

It’s an apt metaphor until it isn’t. Apt in the sense that caring for my wife is daunting and it requires real endurance. And ultimately, it’s exhausting.

But when running marathons, there are markers every kilometer or mile that help you carve the total distance up into more manageable parts. “Okay, now I’m half done.” Or “Okay, now I just have to gut out a measly 10k.”

With MSA there are no markers unless you count steadily worsening mobility, steadily losing one’s voice, or steadily losing. . . pick the system. Despite my wife’s steady decline, I don’t know how to pace my caregiving, so cliché alert, it’s literally one day at a time.

Two aspects of it are especially hard.

The first is the utter selflessness required. A traditional marathon is almost entirely physical. It mostly boils down to whether you’ve put in the miles or not. In contrast, this caregiving marathon is entirely spiritual. Very simply put, the question is whether I can let go of all of my personal hopes and dreams to meet my wife’s immediate needs. All day. Every day. Over and over. And over.

I want to waste some time watching bad television, go away for the weekend, and sleep through the night uninterrupted, but I can’t do any of those things. Or much at all because there isn’t time.

We’re fortunate in that we’ve hired some help, which means I can squeeze in runs, rides, and swims, and thereby flush some of the stress. But some inevitably accumulates.

Recently, I approached a crosswalk in our nearby traffic circle at the start of a run. Not seeing me and thinking she would just roll into the circle, a driver approached the crosswalk way, way too fast and nearly clipped me. I straight-armed her bonnet and lost my shit. So much so she looked scared and immediately turned apologetic. For those scorekeeping at home, my anger was worser than her speeding. “Who have I become?” I wondered.

Which leads to the second challenge. Instead of mustering some semblance of self-compassion, which I’ve become convinced is probably the key to a good life, I continually beat myself up, concluding I’m not nearly up to the spiritual demands of providing the patient, selfless, and kind care my wife would undoubtedly provide me if the situation was reversed.

So, instead of saying to myself, “Ron, you’re doing the best you can to be as selfless as possible in very difficult circumstances.” I find myself thinking. “Because I lack the requisite spiritual depth, I’m doing a shit job caring for my wife.” Those are not constructive thoughts. But, they are mine.

4 thoughts on “An Entirely Different Kind Of Marathon

  1. Bro – Karen and I love you and Lynn both dearly – Feel as if we should come out to see you and her for support but too old and weak to do the airplane routine any more and driving that far is not an option either – You both remain constantly in our thoughts and, knowin g you, I’m confident you are doing far better than most anyone else could or woud do in your situation – May God be with you both and inspire you to continue doing the absolute best you can for her – That’s all anyone can ask – Our best wishes for you both are extended from cold, cold, cold snow-covered Marion, Ohio – GOD BLESS!

  2. Thank you for writing candidly and it seems you finally could find the time to publish this. I had wondered for a long time, so this helps me to prepare for the beyond. I agree with you that yours is not a marathon because marathons eventually end.

    I have lived with scoliosis, which is not degenerative but is one of a set of regressive gene conditions that I was birthed with. My wife works on my body and calls me her living project. When will this cease to be one and become an ordeal?

    Your outburst at the crosswalk caused me to reflect on my probably more-frequent-than-I-think ones. I may think I am good at downplaying mine, but the heat of the moment is likely not lost on those who have to witness it.

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