It’s Caregiver Week on Folks! This week, we’ll be telling stories about the people who provide physical and emotional care for the people they love most. Learn what PillPack can do to help caregivers here.
When I remember it, the sound my brother’s head made as it struck the foyer wall still makes me cringe.
This, the same cowlicked head I nuzzled up against as a child. This, the same head I consoled, close to my chest, after formative teenage breakups. This head, which bobbed gently in time with mine on summer nights, as me and Matt drove home, singing along to the radio at the top of our lungs.
That sickening thud: How could Matt’s skull make such a sound? And will his new wife–the one who will need to take care of him from now on–know what to do when she hears it?
It was after midnight, a day or two before New Year’s Eve in 2014. Although our social lives were happily intertwined, we’d made different plans that evening. By the time I came home, Matt and my parents were both asleep, so I sat down in the living room to watch TV.
Out of the darkened hallway he came, his legs wobbling beneath him. There was untold helplessness in his ashen eyelids and pallid cheeks.
Matt was 23 at the time, a former high school linebacker who had gone on to play Division III football at Springfield College. He was the type of player that anchored a defense, a team leader who caked his cheeks in eye black before the game, who threw down heavy weights with cacophonous aplomb. He seemed to dream about Friday night lights all week long. Weakness, mental or physical, was simply not in his DNA.
So I assumed he was drunk. But I should’ve sensed something else was wrong.
“Been there, buddy!” I said, prepared to tuck him into bed with a bottle of Advil in the nightstand.
Sweat glistened on his forehead, his body hot to the touch.
“No, no. I didn’t have…anything…to drink,” Matt whispered through shallow breaths.
Hunched over the sectional, cushions clenched tight in each fist, he glanced around the living room. “I don’t feel…so good, Dan,” he gurgled, a far-off look in his eyes.
Then he released the couch cushions, stood upright, and lost consciousness. I caught him.
There’s a terrifying heaviness to caressing the forehead of an unresponsive family member. I put a pillow beneath Matt’s head. He was disoriented; his eyes were fluttering. He wasn’t speaking. I screamed for my parents, then called 9-1-1.
There’s a terrifying heaviness to caressing the forehead of an unresponsive family member.
At the hospital, Matt had a CAT scan for a possible concussion and was treated with fluids for a bacterial infection. While the IVs dripped, we passed the time watching Nickelodeon until morning, talking about anything but what had happened.
The doctors told us there was no concussion, but there was an awful lot of smoke for there to be no fire. Matt wanted to get an MRI. But it took months to get any answers.
In May, I was five months into a new job when Mom asked if I could leave work early. There was finally news with Matt, and it was better discussed in person. Sitting on the same living room sectional Matt had fainted in front of that night—the “bad news sectional” where, in previous years, I had learned of Mom’s breast cancer and Nana’s Alzheimer’s—Mom and Dad said that doctors had found lesions on Matt’s brain. The tingling fingers he’d complained about off-and-on, which we had all long assumed were pinched nerves coming from football, were actually the warning sign we’d all been missing.
Matt had multiple sclerosis, or M.S.
My father is a stoic man, not one for tears; to see him sobbing rattled me. But my mom, a cancer survivor who comforted her mother through dementia, was more optimistic.
I digested and asked the necessary questions:
“Did they catch it early enough?” (“Yes. He’s young. Usually M.S. isn’t caught until later on, which is when things get complicated.”)
“Will he have to get treatments?” (“Once-a-month injections for now. Later, depending on progress—his and modern medicine’s—hopefully just a pill.”)
“How’s he doing?” (“Really, really well. Although his doctor says he shouldn’t have gluten anymore—so your homemade pizza nights might be tough.”)
With that, I nodded, hugged my parents, and went out to water my garden. I pulled weeds and plucked cucumbers and tomatoes from their vines. I stockpiled basil for pesto I would make later. In some strange way, I thought that if I could tend to fruits and vegetables, maybe I could tend to what was wrong with Matt,.
Matt came home from work a few hours later with the same all-encompassing, room-illuminating smile as always, as if nothing had happened. He took his diagnosis in stride, adapted to his circumstances. Must be in the genes.
From then on, our entire family came together to take care of Matt. We did our best to make dinners sans gluten. (Admittedly, gluten-free pizza dough was a trial-and-error process.) Matt started running 5Ks and dove into his—admittedly new—workout regimen: less weightlifting, more cardio. One weekend in April of 2016, we gathered a crew and went to a walk for M.S. in Baltimore. Hundreds of people, all affected by the same unpredictable illness, smiling and laughing while brandishing t-shirts that read: “Together, we will end MS forever.”
In its own way, MS had drawn our family closer around Matt, while simultaneously bringing us into a larger family in the multiple sclerosis community.
In its own way, MS had drawn our family closer around Matt, while simultaneously bringing us into a larger family in the multiple sclerosis community. Yet when it was time for me to welcome another person into our family, and turn over caregiver duties to someone else, I paused.
In October, Matt got married to his long-distance girlfriend of more than half a decade, Courtney. I like Courtney; I know they’ll be happy together. But even as I gave my best man speech, the emotions I felt were bittersweet. I’ve always been my brother’s keeper, but now, our life together was seemingly ending. Yet could Courtney really take my place, especially with Matt’s M.S. as a factor? Will she know what to do if Matt loses consciousness? On the bad days, when he feels everything and nothing, will she be able to make him laugh? When he feels disillusioned with the hand he was dealt, can she bring him back down to earth?
Time will tell. These aren’t questions to be answered in haste. But Matt still makes it to movie and board game nights, he’s still a regular at trivia, and pumpkin picking has never been so competitive. Only now, my sister with the Southern drawl comes and I’ve never seen my brother happier. For the first time in more than six years, the woman he loves lives a fingertip away. The other night, we gathered for dinner and the Patriots-Falcons game at Mom and Dad’s house. Around the beginning of the second quarter, Courtney started to nuzzle into Matt’s shoulder and fall asleep. But Matt kept on talking football with me, laughing his full-bellied chuckle, discussing Halloween costumes and making plans to see Justice League.
It was then that I realized how wrong I’d been. A new chapter didn’t mean ours was over. A chapter is, by nature, forever entwined with the ones that come before and after. We might be older, one of us married, but we’re still the same boys who played Whiffle Ball at Nana and Papa’s, basking in the sun’s glow after sliding into home. We’ve just got some tread on our tires now.