Written October 2021 – Last month, I crafted two posts about persistence and endurance. This month, the Susan Mast ALS Foundation is focused on the theme of “Ride On” as we prepare for our annual fundraising event PedALS. It strikes me that we’re often inundated by motivational quotes about perseverance. They inspire and encourage us. Consider these examples:
“It always seems impossible until it’s done.” -Nelson Mandela
“Perseverance is the hard work you do after you get tired of doing the hard work you already did.” -Newt Gingrich
Persons with ALS (pALS) demonstrate unimaginable perseverance each and every day. So do their caregivers who provide vital assistance all day long. From a society-wide standpoint, the word perseverance often summons images of extraordinary athletes like long-distance runners. For you Olympics fans, you might envision the women’s marathon in Tokyo during stifling heat. Feats of perseverance look different in the ALS community. Perseverance is sticking with a meal—even after 45 minutes. Because you know you need those calories—even when you aren’t hungry or interested in the food. As a caregiver, perseverance shows up in countless ways. It’s making the 9th adjustment to help your pALS find a more comfortable position. It’s the 3rd (or 4th or 5th) call to the medical provider to get the equipment your pALS needs.
ALS is a moment-to-moment exercise in perseverance.
Lately, I’ve engaged in numerous discussions with pALS who are exhausted. They are physically drained by the demands of the disease. Also, they are emotionally fatigued by not only ALS, but the ongoing impact of the pandemic on their lives.
Where do we turn when persevering seems impossible? Grace—Love. Kindness. Goodwill.
We typically think of grace and graciousness as they relate to how we interact with others. But so often we need to extend grace to ourselves. It’s okay to acknowledge the enormity of the challenge, the struggle of navigating every single day, the crushing fatigue. In those moments of weariness, let’s pause and offer love, kindness, and goodwill to ourselves as we persevere.