It’s 7 a.m. Sean and I sit in a rental car at the McDonald’s in Drexel Hill, Pa., arguing. Sean is insisting that I reconsider relocating. I feel a piercing pain in my chest each time he repeats it.
“I don’t understand,” I say. “I thought you were ready to start life with me.” The emphasis I place on me sounds childish, even to my own ears.
“You don’t understand. That’s right. You don’t.”
Sean tries to convince me that I have no idea what I’m getting into, and that as soon as I do, I will leave him. The diabetes that exploded his eyes and killed his kidneys is still ever-present. So I could see his point. All of his girlfriends had bailed. So had his mom. And I had been leading an antisocial hermit’s life on a polka dot of an island in the Pacific Northwest. Until I met Sean, via email. He had read a story of mine, and admired it.
“It’s so simple,” I tell him. “I want to be with you.”
“You don’t know what I’m like. Nothing is simple.”
“I know I can do this,” I say, ferociously ignoring the voice in my head that is calmly saying you are lying. “You have to count on me.”
This is a terrible conversation, because he is right. I had never committed myself to another person, let alone someone ill and blind. But I insist and insist.
He warns me further. “If we got married, I’d lose my disability medical benefits. And that just can’t happen.”
“I don’t need the government to validate my vows to you,” I say.
“Let’s stop talking vows. You have to get to know me first.”
“I do know you,” I say. I know enough. I know that since he was a little two-year-old kid his body was a source of panic and pain, the result of needles, hospitals, illness. I know that in spite of that, in spite of the blindness, the kidney transplant, the existential battle of food-versus-insulin every single day of his life with no time off for good behavior, he is, nonetheless, sweet, funny, smart and—hard to believe—sane. Shouldn’t he worry about not knowing me?
This May day has turned hot. Sean rides shotgun in the station wagon, his window down, the Pennsylvania wind perfumed with spring grasses. He seems quieter than usual, but there really is no usual. Not yet. We have only been together, physically, twice. The first time was a few months before, when—after hours of phone calls filled with misgivings and longing—I flew from the Northwest to spend a week with Sean. This time, I am here to interview for a job. I’ve been here for two days.
I brush his arm and he startles. “Sorry,” I mumble, feeling bad, but he pats my hand and all is well.
Though we are not yet married, I think of this as our honeymoon, traversing the graceful suburbs of Philadelphia in search of a hotel. I have to fly back tomorrow night, back to life without Sean, because I don’t yet have a job here. I can’t bear the thought.
Sean says, “Are there skinny trees on the left? The hotel is just past the trees.” I glance to the left. Yes, a grove of treefrog-green birches shimmer against a cornflower-blue sky. Then a hotel. I pull up into the lot, leave the engine running. I don’t like the look of it much.
“What’s wrong?” he asks.
“I dunno,” I say as I pull back out onto Route 1. “Kind of dumpy.”
“It is? I don’t remember it that way.”
Nearly a decade earlier, when Sean was twenty-nine, the world turned red with blood. Several surgeries quickened the road to total blindness so that by the time he turned thirty, the world had disappeared.
Still, he is the navigator, I the pilot. I ask, “Is there someplace nicer around here? I don’t mind driving.” In fact, I love driving. I love driving while Sean tells me where we are, where we are heading. His spatial memory is frighteningly accurate. When I marvel that he knows we are passing the Granite Run Mall, he says, “That’s nothing. I can get you to any McDonald’s in the Delaware Valley.”
Last March we had met in person for the first time. After a zillion emails, then the first scary phone conversation and zillions after that, I flew to Philly, then drove to the Jersey shore where Sean was staying. He and a cousin lived in his granny’s house on a street a few blocks from the sand. I got horribly lost along the way and had to pull over to call Sean several times. Each time he asked, “Where’s the sun?”
When I finally turned onto Bay Road, I poked around inside myself and found no emotion. Nothing. My heart flatlined. I chalked it up to jetlag and being overwhelmed, but worried it was something worse. Some gross failure of courage on my part. Or even worse: an inability to love.
Then I spotted him on the sidewalk. Sean’s black coat flapped wildly in the icy wind like a gigantic raven. He rocked back and forth, hooded and sunglassed, leaning on his cane. When I got out of the car and walked slowly to him, he turned toward me. “Hello,” he growled softly.
Later that night, in his room lit only with stereo equipment and the blank blue screen of his computer, I watched Sean test his blood glucose for the first time. I bounced on his bed while he ran an alcohol swab over his fingers again and again. He pressed a button on a plastic box, slid a little strip into it, zapped his fingertip with a lancet, and then squeezed his blood onto the box. A robotic male voice began to count down from forty, missing any number with seven in it. “Thirty-nine. Thirty-eight. Thirty-six.” Each time I cracked up. When it finally got to “one,” skipping quickly past “seven,” there was a pause. We waited silently. Then the box said: “Not. Enough. Blood.” Sean heaved a big sigh and started the process all over again.
I railed at the machine. “How can you say that? There is enough blood! There has been too much blood! How much can one person bleed for god’s sake?”
But Sean just patiently tested again and again until he got a number. 312. “That explains it,” he says. Sean tells me that when he is that high, he can’t stand being touched. I feel at once sorry and relieved. I had thought perhaps he was already cooling toward me. How kind of him to teach me this. He also explained how exhausting it is to be that high, because the cells of his body are starving. They can’t get at the glucose coursing through his blood.
He asked me to leave the room so he could give himself a shot. I wanted to stay. I wanted to watch. I wanted to help. But instead I felt my way down the dark hallway to the kitchen and poured myself a highball full of scotch and ice. I sipped it in the dark, marveling at my incredible good health, how all the little chemical reactions worked so fabulously together with no effort on my part. While I got tipsy, Sean drew insulin into a syringe, counting on dexterity and a dime pressed against the side of the syringe’s plunger for the right dose.
He called out to me. I returned to the bedroom and slid gingerly into the bed, careful to not touch him. Within minutes, he was sound asleep by my side, his hands pressed palm to palm and his cheek resting on them, like a child.
Sean navigates us further east on Route 1, toward Chadds Ford. This is Wyeth country.
“What do you see?” Sean asks.
I yammer on about how green everything is, discovering with chagrin the limits of my vocabulary. We find a gorgeous hotel, swans wandering the grounds. In the vast lobby, classical music is playing. Sean identifies the composer, Dvorak, his favorite. He is sporting a huge backpack. We walk slowly through the marbled lobby in time with the symphony, Sean’s hand on my shoulder, his cane stretched in front of us. I love the slowness of this march, like the post-vow drift down the church aisle.
The hotel room has a wet bar. Sean cautions me about the prices. While he lays out his testing equipment and medical paraphernalia, I read him the contents.
“Tiny bottles of booze. Famous Amos cookies.”
“Coke, 7-Up, ginger ale.”
“How much is the ginger ale?”
We fuss around the room, squaring chairs so Sean can keep track of where he is. He sits down to test, and I push open the drapes.
“What do you see?”
It is once again a sea of green. “Tree tops. Just miles and miles of tree tops.”
The testing box speaks: “240.” Thrice a normal blood sugar. Sean decides to give a shot. Again he asks me to leave.
I wander the hotel, looking for ice. I can see down into the lobby where a crowd has gathered. They are elegant, laughing.
Back in the room, Sean is lying on the bed, remote in hand. “Wanna watch the comedy channel? It’s where I get all my news.”
This is so much fun I can hardly stand it. It’s happy hour in our room. Lewis Black is making us laugh so hard I fear Sean will have a stroke. The laughing wears us both out, and we fall asleep.
Our First Reaction
I’m waking up and it takes me a minute to remember where I am: in a hotel room in Pennsylvania with Sean. The room is lit with pale afternoon sun. I stretch and smell something cinnamony, like a doughnut. I reach out to Sean and my hand comes away wet. I sit up and my heart sinks.
He is on his back, unconscious. Rivulets of sweat run down his cheeks. I grab his shoulders to pull him upright but I can’t get purchase, he’s so wet. The pillow, the sheets, his chest, all of it is soaking wet. Panic washes over me and I can’t think straight. I just keep shouting his name. I think he should tell me what to do. I curse at him for not being able to help me and for some reason this clears my head enough to remember that he needs sugar.
I fumble with the wet bar key, hands shaking, grab the ginger ale. I pop open the can, shouting all the while at Sean to drink. He does not respond, not at all. Not a grunt. Nothing. Instead his chest is making horrible racking sounds. I start to cry and curse some more and try to prop him up but he is dead weight. Despite the fact that he only weighs 135 pounds, I don’t have the strength to pull him upright. I get one shoulder up onto the pillow and his head lolls back and he chokes. I try to climb beneath him and fall off the bed. I try again. I cannot believe how heavy he is. I finally get under him and move his slick body against the headboard. I struggle out from underneath him and pour the ginger ale into his mouth. It dribbles out but I keep pouring and shouting and crying and finally, finally, he swallows. I am pouring ginger ale all over us, barely keeping a grip on his feverish head, but he swallows some more, then groans, a real groan. He tries to say something, and his retina-shredded pale blue unseeing eyes open. He takes the can from me and downs it.
“I am so sorry,” I say as I hang onto his wet body. “I am so, so, so, so, sorry.”
He is fully conscious now, the sugar in the soda reversing the diabetic reaction to too much insulin. He says, “How ’bout those cookies?” He slowly sits up. I bring the entire contents of the wet bar to his lap. As he stuffs cookies into his mouth, I open every little liquor bottle. We picnic on the soda-soaked sheets.
“Thank you,” he says. He sighs, a deep spiritual sigh. “I’m sure that was hard on you.”
Eventually—his body in post-reaction soul-deep ache from keeping itself alive—Sean goes into the shower.
I go to the window and look down at the coiffed gardens, daffodils everywhere. The crowd from the lobby has moved outdoors. It is a wedding party. The bride’s billowy white train encircles her new husband.
I wonder what their vows were like. I wonder how well she knows him. I wonder if she will ever get to witness his tensile strength, his calm in the face of stress and storm, his dogged willingness to walk through the fire every day because of love for everything, including her.
I hear Sean emerge from the shower. Steam clouds the window and wraps itself around me, like chiffon.[boxer set= “parks”]
Gorgeous writing, mesmerizing story — couldn’t have pulled myself away even if I’d wanted to try. Beautiful
My Type I diabetic brothers in law died in their 40’s. It broke my heart. You did a great job describing Sean — much like my husband’s beloved and gone brothers.
I’ve been a Type I diabetic for over 25 years and loved your story. Writing is well done of course but I’m floored at how helpful you were to your man. No one has ever done that for me so in addition to being a great writer you’re a great person. 🙂
Wonderful story filled with subtle emotion and tenderness. I began reading and couldn’t stop. Thank you, Robin, for sharing this.