SQUIRMY AND GRUBS AND THE WASHING OF FEET
Photo from Unsplash.
“No,” said Peter, “You shall never wash my feet!”
Recently I took a deep dive into a delightful YouTube channel called Squirmy and Grubs. If you’re looking for content that is both uplifting and entertaining, I highly recommend you check it out! “Squirmy” and “Grubs” are Hannah Aylward and Shane Burcaw, a young couple living in Minnesota and documenting their life together for all the world to see. Most of their videos show them cracking jokes and doing everyday things like playing with their dog or (in pre-pandemic days) taking road trips, but they are also passionate advocates for disability rights and representation. Shane lives with a condition called Spinal Muscular Atrophy, or SMA, which causes his muscles to be extremely weak. He uses a wheelchair and needs help with daily tasks such as eating, bathing, and dressing. Hannah does not have a disability.
In several videos, Shane talks about how his relationship with Hannah has helped him to overcome what he calls his “burden complex.” Because Shane has required significant daily care since infancy, he explains, he struggles with a sense that he is a burden to his family and friends. In his second book, Strangers Assume My Girlfriend Is My Nurse, Shane tells the story of one of the first times he and Hannah shared a meal together out at a restaurant. Still feeling the jittery nervousness of young love, he was a little self-conscious going into this lunch date. Because the muscles of his jaw are weak, Shane uses his hands propped under his chin to chew his food, something that often garners stares from strangers. Here’s what happened, as told by Shane with his characteristic sardonic wit:
I sheepishly asked Hannah to hold my arm up while I chewed my food. She of course was happy to help. Immediately, almost involuntarily, I began to fire off jokes. “It’s gonna be dinner and a show for all these people who get to watch the sick boy eat cheese curds,” I said. “They’re probably assuming this is the first time I’ve ever been out of my house. You should move to the other side of the table, make it look like you’re refusing to feed me. Put a fork in my hand and scream, ‘Hold it!’” Hannah laughed along with me, which was reassuring, but my head was filled with the emotional baggage of my past, of being looked at like a diseased alien creature, of being avoided on the playground, of being spoken to slowly, of being ignored and left out, of being treated differently simply because I look different. Half of me expected her to stand up and run away at any moment.
“You know I don’t think this is weird, right?” Hannah’s voice caught me off guard and pulled me out of my deluge of painful thoughts. “Helping you chew like this? I don’t care if people are staring. I love helping you.” I took a deep breath, exhaled, and felt a smile grow across my face. I hadn’t realized it, but the constant façade of humor was downright exhausting. Hearing her tell me I didn’t need to keep up the act just for her was like sinking into a cozy bed at the end of a long day. The rest of the pavilion melted away and all that remained was Hannah, smiling at me, and forking another cheese curd into my mouth.
From Strangers Assume My Girlfriend is My Nurse, Chapter 12.
This scene has stuck with me. Although I do not have a muscle-wasting disease like Shane, I, too, struggle with my dependence on others. His needs and my needs (and your needs) are very different, but we all need something. None of us can do life entirely on our own, however much we might like to think that we can or should.
In my particular context, I live with a chronic illness called Postural Orthostatic Tachycardia Syndrome, or POTS, which is a dysfunction of the autonomic nervous system. This causes me to feel extreme fatigue, as well as a host of other symptoms such as racing heart, dizziness, shortness of breath, and nausea. I struggled along well enough with this illness for about 12 years, until I became pregnant, and my body decided it had had enough. After the birth of our daughter, Elizabeth, I became severely ill. I could hardly walk from my bed to the couch and leaving the house was a monumental challenge. Grappling with this illness while caring for a newborn and embracing my new role as mother was an indescribably difficult experience. I wanted to do everything for this tiny little baby. I thought that was what being a mother meant – being the one to do everything – breastfeed, change diapers, cook dinner, get up at all hours of the night, keep the house clean (in addition to working). But my postpartum reality brought those expectations crashing down around me. I had to have my husband carry me to the toilet in our hospital room (romantic!). My mom, who was supposed to stay with us for a mere two weeks, put her life on hold and moved in with us for a solid six months. I had to rely on my mom and my husband to make me meals, do my grocery shopping, drive me to appointments, and – most painfully, for me – to help me care for my baby.
Two years later, I have – thank goodness – improved greatly from those dark days. But I still struggle daily with severe fatigue and aching muscles, and I still struggle to allow my mom and husband to help me care for Elizabeth. I am clinging to some ridiculous notion that I can and should be fully independent, a superwoman who can single-handedly care for her child, run a household, and hold a job. (It doesn’t help that I’m Texan, and we really love to pull ourselves up by our own Lucchese boot straps.)
That’s why Squirmy and Grubs’ story resonated with me so much. Hannah’s persistent, steadfast love has slowly led Shane to believe that he is not a burden, that his dependence on others is not a bad thing. In fact, they frequently talk about how Shane’s need for caregiving has made their relationship stronger and their connection more intimate.
My spiritual director (the wisest person I know) often reminds me that love is about connection, which involves both giving and receiving. Helping another person can be a selfless act, but it can also be a way for us to avoid vulnerability. It can feel very vulnerable to receive, to name your need, to ask for help, to graciously accept a gift. If we are always the one who gives care, who lends aid, who serves another, we may be acting more out of a desire to protect our egos than in genuine pursuit of relationship.
In the Gospel of John, Chapter 13, Jesus has dinner with his disciples. And then he does something entirely unexpected. He ties a towel around his waist, grabs a basin of water, and begins to wash his friends’ dirty, smelly feet. Footwashing would normally be done by a servant, not a revered teacher and famous miracle worker. The disciples are shocked and embarrassed. When Jesus comes to Peter, Peter flatly refuses to let Jesus wash his feet. He says to Jesus, “You will never wash my feet!” Peter cannot bear to allow the Son of God to scrub his grimy, calloused toes. But Jesus answers, “Unless I wash you, you have no share with me.”
Jesus’ response to Peter demonstrates that being his disciple is not only about serving others; it is also about allowing ourselves to be served. It takes humility to kneel down and wash another’s feet, and it takes humility to stick our sweaty, unpedicured feet into another’s gentle hands. Feeding your boyfriend is an act of love, but so is allowing your girlfriend to feed you. At different times in our lives and at different times in each day, we are called to be the giver or the receiver. It’s not about keeping score of who does what for whom. It’s about staying connected in the moment.
Over and over again in his teaching and ministry, Jesus makes clear that there is absolutely nothing to be ashamed about in depending on others. We were made, after all, to depend utterly upon the grace of God. In fact, the more we learn to accept our limitations and ask for help from others, the more our hearts are opened to receive the love of God. In a culture obsessed with achievement and independence, we can bear witness to the love of God not only by serving others, but also by receiving the help, love, and care of others.
A prayer: Lord Jesus, give us the courage and humility to serve others and to allow others to serve us.Open our hearts and our hands to receive the gifts of grace. Amen.
