What it’s like to have cerebral palsy at Mass

iStock

“Let us join hands and pray as the Lord taught us.”

That sentence should not cause me dread, but it does. As soon as I hear the first four words spill out of Father Jim’s mouth, a bolt of panic strikes my mind. My fight-or-flight reflex is triggered as I desperately begin seeking the best course of action. But the speed of human reaction is unforgiving, and my time to think is over in an instant. I silently scold myself: You should have sat on the end—where no one would be beside you. It is an embarrassment I have felt too many times before, when I have momentarily forgotten my cerebral palsy as I slide into a pew before Mass. The condition causes weakness, spasticity and a lack of control throughout the left side of my body and has shaped my life since birth.

Advertisement

There is nothing I can do to avoid the dreaded moment now. I work in communications at Boston College High School, and at a crowded all-school Mass like this, I am going to be stuck between two people anyway.

My boss, Colleen, is to my left, and I cannot tell who reaches out first. My hand finds hers, through a hazy mixture of unconscious muscle memory and vigorous focus. I know where my hand should be, but I must devote serious brain power to get it there. I barely pay attention to my right side, where my fingers have already found the unthinking safety of a coworker’s palm. But my left hand, crippled and contorted, has tensely wrapped itself around Colleen’s. I bristle at my clammy grip, wondering what she must be thinking. She is well aware of my cerebal palsy but seems to be paying it no mind, focusing on the prayer and reciting it in unison with the 200 other faculty and staff members in our high school’s small chapel.

I must put my flaws in the palm of someone else’s hand—the flaws I always try to keep locked away, tucked tightly into a ball in my jacket or pants pocket.

Meanwhile, I fumble over sentences I have said thousands of times, my mind vacantly guiding my lips over sacred words. My face tingles as sweat beads on my forehead and a blaze of self-conscious terror spreads up my spine. Every morsel of my attention is focused on that hand. Focused and fearful that at any moment it could spasm and awkwardly crush Colleen’s fingers in a tight grasp. I concentrate on my wrist joint—painfully articulated and locked downward. Colleen is holding my hand from underneath while I stand there pleading with it, praying to avoid further contortion.

[Don’t miss more stories like this one. Sign up for our newsletter.]

Whenever my hand is tensely wrapped around the palm of a colleague or fellow parishioner, I spend an eternity locked in my mind as the words of the Lord’s Prayer ring out around me. I rock back on my heels and let my vision blur. When the prayer is finished, I decouple as soon as possible and avoid the person’s gaze at the sign of peace. A heavy awkwardness hangs in the air, even if the embarrassment is only on my part. In joining hands, we give up our personal space and let our walls come down. My right hand does it as easily and mindlessly as I suspect anyone’s might. But my left hand requires excruciating effort that forces me to confront my brokenness. I must put my flaws in the palm of someone else’s hand—the flaws I always try to keep locked away, tucked tightly into a ball in my jacket or pants pocket.

I have often wondered why I don’t simply lean over to the person to my left and tell them I am uncomfortable. Is it a compulsion toward the ritual or deference to the idea that suffering in silence is a path of less resistance? Maybe.

My flaws and fears are manifest in that hand. When Colleen lifted it up to God, she helped carry that burden, if just for a moment.

But on that day, Colleen lifts my hand up at the conclusion of the prayer. She turns to me during the sign of peace and gives me a hug. We do not need to speak; I know from her expression that I am accepted entirely. There is not a trace of awkwardness in the pew. As she turns smiling to a teacher in the row behind us, I know I am among family. I understand in that moment just why we join hands during the Lord’s Prayer: to stand before our Father as one family, truly and literally.

As the sign of peace comes to a close, my mind drifts back to the homily. Father Jim mentioned the importance of recognizing ourselves as loved sinners. “You need to have the feeling,” Father Jim said, “from Jesus’ baptism when God told the world, ‘This is my beloved.’” He asked us if we had ever experienced that feeling. I think of Colleen. Through her kindness and acceptance of me, I felt God dismissing my brokenness, my fears of inadequacy to say, “This is my beloved, in whom I delight.”

I know that I will still receive the call to join hands with trepidation. But I also know that this moment has bolstered my confidence. It has reminded me of our universal human need to lay down our weakness. My flaws and fears are manifest in that hand. When Colleen lifted it up to God, she helped carry that burden, if just for a moment. I will always be scared to share my weakness with other people. But if I retain some fragment of the grace I felt that day, it will always inspire me to put myself in the palm of someone else’s hand.

Comments are automatically closed two weeks after an article's initial publication. See our comments policy for more.

Advertisement

The latest from america

The setting of “West Side Story” is San Juan Hill, the nickname of the Lincoln Square area of Upper West Side of Manhattan—an area bulldozed and redeveloped into the Lincoln Center performing arts complex in the early 1960s.
Ryan Di CorpoFebruary 25, 2020
Lent is not the time for hating my body or ignoring it or making it suffer for things that I have done, no matter what the voice of my eating disorder says.
Amanda Martinez BeckFebruary 25, 2020
Democratic presidential candidate Joe Biden departs services at the Royal Missionary Baptist Church in North Charleston, S.C., on Feb. 23. (AP Photo/Matt Rourke)
Bernie Sanders may yet unify the Democrats, writes Robert David Sullivan, but there are still questions about what to do if most primary voters oppose him.
Robert David SullivanFebruary 24, 2020
In this last week of Ordinary Time before Lent, take time to reflect on the ordinary blessings in your life and cultivate gratitude for them.
James Martin, S.J.February 24, 2020