I Was the Caregiver, But I Didn’t Know How to Care

“I can’t,” he said, not moving.

I held the fork in front of Marvin’s mouth and stopped, hovering.

A spasm went down his arm and he knocked his wheelchair’s joystick. The chair shifted and bumped the table. He had been having extra trouble chewing today.

I didn’t know what was wrong. I stared in fear.

“What do you mean?” I asked, my heart thumping.

“It’s…too…salty.”

Marvin (a pseudonym) spoke with belabored effort, one of the effects of his severe cerebral palsy.  

I could feel my jaw setting in frustration and offense. It hadn’t been trouble chewing; it had been reluctance.

He must have seen the look on my face as I lowered the fork away from his mouth. His hand moved jerkily to the joystick again, and he turned to face me.

Marvin had done his best to eat the meal I’d cooked him. In addition to confining him to a wheelchair, cerebral palsy made his facial expressions difficult to read, but I’d learned to pick up the signs when he was frustrated. He was a couple years older than me, but he could pull off a stare as stern as any parent.

All I could think about was how frustrating the whole situation was—for me.

I did the shopping and I’d walked back to his college dormitory in the sweltering heat with heavy grocery bags hanging off my arms. Despite being exhausted and sweaty, I’d cooked him a meal.

And I’m a bloody good cook, thank you very much.

But he wasn’t eating it.

I have no idea what it was like for him to see what might have looked like contempt in his caregiver’s eyes. To this day I wish I’d handled things differently.

It took me too long to get over my personal offense.

It can be easy to discount the speed of someone’s thought process when they move slowly. Because I didn’t know Marvin very well yet—I wasn’t yet familiar with his keen eye and quick retorts—I selfishly afforded myself extra time to process my own hurt.

But both Marvin’s emotional intelligence and his wit were sharp as the crack of a whip.

Marvin struck at the tension. “Well, it could be worse,” he said carefully. He lifted his hand as high as he could, miming holding a fork.

“I could be feeding it to you.”

I laughed.

The joke, I realized later, was an extremely gracious effort on his part to alleviate my stress and to gift our predicament with levity.

I called KFC and ordered him a sandwich.

It wasn’t until I was driving home that I realized the extent of my failure. The groceries were bought with his money. So was the KFC. For me, an unplanned expense of $20 or $30 wouldn’t derail my finances. But for Marvin, who was living on assistance and whatever extra money his family could provide, it was a burden.

And for Marvin, there were the health implications of replacing a home-cooked meal with crispy chicken. He wasn’t as physically active. Details like these had a greater impact on Marvin, who wasn’t in charge of his meals or exercise regimen, compared to someone who was temporarily able bodied—like me.

Who the hell did I think I was? Was I not empathically equipped for the job? Was Marvin going to fire me?

Family members reminded me I was merely a college student, and that I had had zero training as a personal support worker. This and other stumbles had made that fact painfully clear.

My reaction to the situation rattled the foundation of trust I was still building with Marvin. Had I been able to curb my offense, it likely wouldn’t have been notable.

I regretted not paying for the second meal out of pocket, but I couldn’t conceive of how to offer Marvin money without causing further friction.

My guilt over the wasted food and money was a symptom of a larger problem I was facing. I wasn’t a nurse; I was barely qualified to be a caregiver, but I was having to wrestle with some of the difficulties that helping professionals face all the same—issues that people with extra letters after their names typically tackled.

I didn’t have any letters after my name. I was overwhelmed.

Marvin’s taking a weekend away came at the right time. I went back to work with an apology and a promise to be more sensitive. “It’s OK,” was his only response.

I was hoping for more of a conversation. I wanted to feel empowered and reassured. But it seemed that to Marvin, there wasn’t anything more to talk about. It was a sincere exchange.

He was the person who helped me the most in coming to terms with the demands of what I thought would be an easy summer job. The more time I spent with Marvin and watched his daily struggles, the easier it became to anticipate his needs.

Coincidently or not, for the next few evening shifts, Marvin’s mother left meals in the fridge for me to reheat.

Marvin’s sensitivity and mentoring began right from the start. At my interview, an assistant was present to ask questions since it usually took people awhile to adjust to Marvin’s speech. I began directing my responses to his helper.

Suddenly Marvin interjected—carefully and kindly, putting extra effort into his words so I would understand. “It’s OK to talk to me.”

He could have just decided not to hire me based on my de facto ignoring him. Instead—generously—he began to teach me.

I never did quite get over the stress of being woefully unprepared for the job. But as I reframed my understanding, it became easier to remove my ego from my mistakes.

Marvin wasn’t my summer job; I was his lifeline. He couldn’t handle keys or open doors. He relied on me to be on time just to let him into his dormitory. Or get out of bed.

I was the caregiver, but Marvin served me humility on a silver platter.

If I was exhausted, I couldn’t opt to not help him with his nightly exercises. Keeping fit and managing pain were a daily struggle. For me, this was Caring 101.

When I told my friends about the demands of the job, the response was invariably, “Oh my god, I could never do that.”

But instead of merely taking a summer job, I had actually forged an unforgettable relationship.

Now I encourage my friends to form relationships with people who are different from them. Marvin not only held up a mirror for me to glimpse my youthful self-absorption, he also helped to create a safe environment for me to learn to empathize—something no disabled person should have to do.

Marvin taught me how to care. He taught me about the necessity of putting someone else’s needs before my own at times. He taught me about relationships, about balance—about give and take.

This wasn’t just a lesson in work ethic; it was a training for the rest of my life. Thanks to Marvin, I would never be the same.

Ben Steele

Ben Steele

Ben Steele is a writer, theater professional and nonprofit administrator who was born in England, grew up in Canada, and recently settled in the U.S.

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