By Sarah B. Simpson
I enter your bedroom with a silent prayer: God give me grace. Called upon to help you in any capacity these past three and a half years, I turn into an idiot. My fear of failing you causes me to fail you. And now you’ve asked me to take on the biggest challenge yet: your morning routine. Your wife is out of town, getting a much-needed, well-deserved break as your care-giver, and I am one of a few friends who’ve responded to your request for assistance.
What was your morning routine before the accident? An effortless thwack to silence the alarm. A steady stream of urine into the toilet. You brushed your own teeth, dressed in no time, grabbed some coffee, and walked out the door on feet whose heels never quite seemed to touch the ground. I have no doubt your routine was simple. Now there are pills to swallow, dying muscles to massage, braces to remove from both arms and one ankle with a loud Velcro rip. Your catheter filter must be flushed and the bladder on your leg replaced—somehow without getting pee all over my hand. And now, unlike before, there is that damn tracheotomy stoma, and something called an inner cannula, and it is my job to stick a saline-dipped Q-tip through the hole in your throat and swirl it around to remove any gunk.
So I pray to God—by which I mean the part of me that never forgets it’s not separate from anything else, past, present, or future. The part of me that therefore has no fear. Ego sum. Nolite timere. It is me. Do not be afraid. I pray for grace: the ability to look fear in the face and respond with love.
I walk around your bed to your dresser and empty the Tuesday a.m. square of your plastic pill organizer into my palm. Already there is doubt. Though your eyes are closed, I speak: “I thought I saw Hank put these in a little cup first.”
Yesterday I watched our friend Hank do your entire morning routine. His hair, usually secured in a bun, fell in dark waves all the way down to his waist, giving him an angelic air as he sleepily, silently tended to you. He’s been helping you out on a regular basis for weeks now. He lives in the same town, after all, whereas I live two hundred fifty miles away. Sometimes I wish I didn’t, so I could help you out more regularly and be better at it, instead of having to relearn the ropes every few months I see you. I wish my friend Courtney were here. From the beginning of this whole tragic mess she’s been better at these ropes, seemingly unafraid of your suffering and just determined to lessen it. She’s not even scared of the machine that sucks mucus from your lungs, or of pushing hard on your chest with both palms to help you cough it up on your own. I’m always afraid I will break you—or break you more than life already has.
You shake your head, no cup needed. With eyes still closed you open your mouth. A baby bird. You swallow all the pills at once with the water you suck through the straw that’s always near your face, which, in this case, is connected to a giant thermos on the floor.
As Hank did yesterday, I now wait for further instruction. Just like yesterday, you want to be turned to your right side. It is painful to lie so perfectly still on your back all night long, unable to make the slightest adjustment. Pretty much everything about this life is painful for you. Lately your right shoulder has been especially problematic, and now you ask me to massage it before turning you.
“Nope, other right,” you say as I start to scurry around to the left side of the bed.
God, give me grace.
I use the CBD salve on the dresser. Rub it in and in and in until my hands cramp, but your entire body is a cramp so I will keep rubbing until you say stop. Last night, when you asked me to massage your left forearm and hand, I got dizzy in doing so and had to lie down. I chalked it up to being too stoned (a state I almost always get into when we hang out—some things never change), but mostly it was the pliancy of your flesh that sickened me. You used to be such pure lean muscle. That wasn’t how your forearm was supposed to feel. But today I am not dizzy. God is working through me now, and at the same time you are God. You thank me.
I set about turning you to face the window, whose blinds are still closed because you plan on sleeping a little more. There’s that Velcro rip as I remove the braces from your arms and ankle. I take the pillow from beneath your legs, and unlike yesterday, thankfully, this movement does not cause your entire body to spasm, to stretch long and tight for a moment before relaxing again. I bend your doll-like legs, guide them to fall to the right, and shove between your knees what you call the “crinkly” pillow, using the other pillow to bolster your back and keep you in place. I straighten—or try to—the fingers of your left hand upon the mattress. They are stubborn in their insistence on curling in. You thank me again. It is probably the phrase you say more than any other, and I wish it wasn’t.
For the next hour I read and do yoga in your living room, grateful for the glorious ease of movement, of breath. You rely on a machine for even this—it stimulates your diaphragm eighteen times a minute, regardless of what you’re doing. Even when you’re crying, your chest maintains the same steady rise and fall. You can’t really laugh anymore. You laugh with your eyes and a smile and maybe a wordless sound, but never with your breath, never your entire body. You can’t sing anymore, either, which you once loved to do while driving and cooking (I see you bouncing to a beat, tossing a pinch of salt into a pot), music blasting, in another life. Your bruised cervical spine has taught me this: a significant part of a person’s such-ness depends on how they breathe.
At ten o’clock I enter your room again and do what I saw Hank do straightaway yesterday: I open the blinds to let more light in. I do this for you as much as for myself. One of the things I hate about this apartment—aside from it being a place you’d never live in if that woman in the SUV had seen you there on your motorcycle as she was merging into your lane, and hadn’t run you off the road and neck-first into a telephone pole—is how dark it is. There are only windows along one wall of this place, and they all look out onto a swimming pool that you’ll never use unless you do decide, some desperate day, to drive your wheelchair into its deep end, regardless of whose heart it might break.
I start preparing a saline syringe for your catheter filter, realizing after a few impotent attempts that I need to remove the little syringe cap first, but then you request that I start with your trach. The part of your morning routine I’ve dreaded the most. I want nothing to do with that hole in your throat. God give me grace.
Following your whispered instructions, I remove the square of gauze from behind your priestly-like collar in order to swab behind it with a sterilized Q-tip. This is also where I’m supposed to remove the inner cannula and replace it with the little red button you always have on during the day. But somehow I miss your instructions about the cannula, or maybe you forget to give them, and the damn button won’t snap on, and for minutes that feel endless we don’t know why. No matter how much you explain it, with me having to manually cover the hole in your throat so you have a voice with which to explain, I cannot make the button click into place.
God give me grace. This prayer keeps any tears from falling but I feel my own throat start to ache as a drop of sweat drips between my breasts, and my voice shakes as I say, “I don’t know what to do.” You have said these exact words to me many times since the accident. “What do you feel like your choices are?” is usually my response, and we go from there.
I can see your brain working as you look up at me. You must be so tired of looking up at people all the time. I am tired of looking down at you all the time. I miss standing next to you, shoulder to shoulder, and hugging you and having you hug me back instead of the lame draping of hands on shoulders that constitutes a hug from me now. I want to wrap my arms around your entire torso and squeeze but I never can because there’s always something behind you, a chair or a bed. I keep watching your face as you think of how to meet this challenge, my incompetence.
“We’ll tape the fucker,” you say. “They can probably fix it at PT.”
Yes, I’m sure they can, I think. Because they are not idiots.
Somehow I manage to find the tape and by an even greater miracle I manage to rip a piece off and secure the button to your throat well enough for you to speak at a normal volume. “Okay,” you say, glancing at the dresser, “now you’re going to take that inner cannula…” and I realize the cannula is not on the dresser, because it is still in your throat.
“I don’t have the inner cannula!” I exclaim, gleeful, because now we know what the problem is and how to solve it.
Your face relaxes into a smile that erases the past three and a half years and then some, back through decades until you may as well be the seventeen-year-old I once kissed while we both lay under the stars at the top of a half-built half-pipe while our friends partied inside the adjacent barn. Your eyes smile like they used to all the time when I did or said a stupid thing. “You really are an idiot,” they say, and I have never felt so loved.
Grace without end.