Day to day I don’t know if my father
is hurtling toward twilight or dawn
is just a long time coming.
His mouth is full of stops and starts
and we try to decipher the new
language of words he can’t remember.
We measure him in half-cups and sips.
We pray the steady rise and fall of him
like a rosary of relief and longing.
We memorize each knot of his spine
like a rosary of bone and moaning.
We do not know if we should pray
for an end or a beginning.
We pray instead in icepacks
and extra pillows and cans of nutritions.
We pray not with knees pressed to the ground
nor with tongues busy with sacred groanings.
We pray instead with hands busy with
the work of my father. We pray as if
he is not sand, he is not air.
We pray as if the benediction of our
hands on the sags and folds of him is enough.
My next book’s a work-in-progress…just like moi.
Temps notwithstanding, spring really has sprung. At least that’s what I’m attributing my cleaning jag too. Clearing out the “junk drawer” of one of my filing cabinets, I’ve come across quite a few treasures: copies of the first NEA Arts magazines I wrote by myself, an interview I did with a food historian for American Spirit, a mini-collection of music poems that must have been the hand-out at a now-forgotten workshop, Maureen Seaton’s reading list from the very first poetry workshop I ever took, the essay I wrote to get into grad school, a profile in the MFA newsletter from my first year in the writing program.
I’ve just finished reading a stack of e-mails I’d printed out from when I was on sick leave from work with pneumonia from December 2005-April 2006. I’m both tickled and alarmed by the fact that even as I sent my boss updates on my clearly deteriorating condition, I continued to also give her updates on all of the work I intended to do while I was on sick leave.. Here’s a sample, from January 2 (which I think was a day or two before I was admitted to Adventist Hospital for a week).
“I’m going to the doctor tomorrow afternoon. my lungs are still full of crap and even walking to the front porch to get my mail makes me out of breath. I’m thinking I won’t be back at work until monday, but I’ll see what the doctor says. Unless the doctor forbids me from leaving bed the rest of the week, I’ll plan to get as much work done at home as possible….”
Did I mention that at this point I’d been diagnosed with walking pneumonia?
I carry around this idea in my head of myself as a slacker. But then I read e-mails like that, or I think back at how frantic I was to get as much work done as possible leading up to my fibroids surgery, and I realize that that particular story I tell about myself isn’t exactly accurate. I mean in one e-mail I tell a colleague I have pneumonia, but “I’m going to try and stop by on Thursday and pick up some newsletter stuff [to work on].”
I feel guilty about time off. I remind myself often that we have an allotment of sick days for a reason. That my lungs are still damaged from my 2006 illness and no one expects me to trudge into work on 100-degree days. No one’s surprised when allergy season comes along and I have to take time off because my asthma’s acting up. I know the whole spiel about taking time off to take care of ourselves so that we don’t end up with something worse. And still, I feel guilty.
I come from a long line of women who can’t sit still. They are always sweeping something or cooking something or washing something. Even when they’re sick or exhausted, chores have to be done. Their lives seem to revolve around action, not thinking. If you’re not actively doing something, then you’re wasting time.
I live a life of the mind. I’m thinking about poems, about PR campaigns and interviews for work, about what I want to tackle next in my ongoing practice of self-improvement. I may look passive, but mentally, emotionally, I’m hard at work. I’ll cook, clean, and wash as much as I need to so I don’t live in a total pit, but I’d rather read a book or watch a good TV show, whatever gets me to a thinking place. Still, though I intellectually know I’m doing something, my DNA keeps telling me something else.
And because I’m already carrying around this guilt that I don’t do enough, when it becomes imperative that I not do anything due to illness, the guilt intensifies. Sigh. While I have learned that I need to relax and take days off and enjoy them, I’m still working on not having to spend those days shushing the chorus of “I shoulds” yelling in my brain.
And now as I’m easing back into full-time work, I have to keep reminding myself that I should, in fact, be “easing” back into it. Sure my outside incision has healed well, but there’s still numerous incisions inside of me that are aggravated every time I bend over, or take a walk, or go up a flight of stairs. I have to remind myself to check in: How do I feel? Am I in pain? Am I tired? I still have another week at home telecommuting. And I’ve promised myself that once I’m commuting to work again, if I’m overly tired at the end of the day, I’ll work out an arrangement for a few weeks so I can continue to telecommute a few days a week until my strength’s back and riding the Metro doesn’t make my insides ache any more. And maybe, just maybe, I won’t feel guilty about it.
Piglet and I decided to take a selfie.
As the French writer Colette entered her elder years she was crippled with chronic arthritis. She often spoke of writing from her raft—her bed and the moveable bed tray/table where she kept all her necessities. Of this table, she wrote in The Blue Lantern:
“Including the all-purpose knife with its scorpion handle, the bunch of fountain-pens and various knick-knacks of no particular use, I have assembled on its back a fair number of good and willing servants.
All round me a litter of papers; but a litter belied by its appearance, with more often than not, to add to the confusion, a boiled chestnut, a half-eaten apple, and for the last month a seed-pod…”
Next to the blue-and-white couch where I have slept since coming home from the hospital I have my own necessities and knick-knacks laid out on the gold metal-and-mirror coffee table. Fallen in love with at Pier One Imports, the table’s actually in three parts; the middle and left section stay fairly stable, while the right section creeps up and retreats depending on how close I want my coffee cup.
At the far end are the tax papers that I have to figure out how to scan so I can send them to my friend J for her tax return magic. The middle section has the apparatus for the breathing exercises I’ve long ceased to do faithfully, Thomas Lux’s New and Selected Poems (the second volume of poetry I’m trying to read cover to cover this year), the antique gold embroidered purse that usually hangs around for decorative purposes and its accompanying glass paperweight. There are the remotes of course—for the TV and the Roku box, and also the tissue box my mother insisted we bring home from the hospital since they were going to throw it out. There’s also mail I’ve yet to look at—the Phillips Collection membership mgazine and something else or the other I should read. And my journal, of course, which I’ve managed to write in near every morning except the Saturday after surgery when thanks to morphine my writing was cramped and illegible, trailing off not only in the middle of sentences but also in the middle of words. And there’s also the 2013 yearly journal where I’m tracking the books I’m reading during my convalescence, the poems I’m writing, the little achievements.
There are also the pages I tore out of the latest House Beautiful and have yet to file in the “some day” files, the two “diamonded” bobby pins I wore in my hair the other day to pretend that I’d combed it, Smith’s Rosebud Salve (one of four or five tins and tubes scattered in various places throughout the apartment), thank you cards, a list of people to thank, and the stamps that Eleanor brought me today. (She also brought me a delicious spinach and cheese quiche.)
Somewhere there’s also the first section of my poem “written in between the lines of” Marina Abramovic’s manifesto. My attempt at the second section was depressingly awful, so that particular writing tablet’s been tossed under the table. There’s also a pile of articles—including an old New Yorker profile on George Clooney titled “Somebody Has to Be In Control” that I may re-read some day. And of course there’s the last pen I actually like writing with. I seem to have used up the ink in all of the rest of them. (When did I become so picky about pens?)
Though I expect to brave my bed come Tuesday (I’ve been sleeping on the couch since I came home as it made it easier to sleep all the way or partially sitting up, which was easier on my incision), I expect to return to my blue-and-white, mirror and metal raft for the rest of my convalescence, for where else can I snuggle with Piglet (a get-well gift from a high school friend) and be mindful of his dictum: “Doing Nothing Sometimes Takes All Day.”
Went downstairs to check the mail on my daily walk. Turns out the disco mirror in the foyer is perfect for a selfie.
This morning as I reclined on the blue-and-white couch, my mother sweeping my bedroom, the sun momentarily blaring through the scrim of clouds, I felt acutely the loss of my “real” life. I wanted to be bundled up on my way to the farmer’s market, or puttering from one end of my apartment to the other putting away this and that, or reading the day away because I wanted to not because it’s the only option. i realize this situation is only temporary, but I feel 10 years old again when five or six weeks of waiting for freedom might as well be a lifetime.
I also feel like a bit of a fraud. True there is a very ugly incision running from the top of my pubis, slanting around my belly button to an abrupt end. When I look down at it, I can’t help thinking that it looks a bit like a disappointed butt-crack. Still, even after the Percoset wears off, I can get up from the couch by myself, I can walk the hallway five-ten times a day, and I’m no longer crippled by gas pains that hobbled me in two. I’ve made my breakfast two mornings in a row, and it doesn’t seem right that I’ve asked people to bring me food once a week or come do my laundry. True, I could barely stretch to the top shelf of the shower caddy to reach the hair conditioner this afternoon, and true if something falls on the floor, I either have to sit down or try and do a combination plie with a slight bend to pick it up, and true the physician’s assistant told me that the incision would be weak for at least two weeks and someone else told me a horror story about a woman who ripped open her incision because she was secretly doing housework while her family was asleep.* Still…
I know all the reasons why I still need help. I know that by 9pm I can barely keep my eyes open after a day of mostly lying on the couch. But still, I sometimes find it hard to be okay with people wanting to do for me. It was all fine in the theoretical before I had the surgery, but now that I know I don’t have cancer and everything turned out just fine, I feel less worthy somehow.
You would think we’d need grace only to be willing to give of ourselves, but it turns out we need grace to receive for ourselves as well. And we especially need it, I think, to be willing to accept the kindness of others even when things are not as bad as they could be. Our lives don’t have to be tragedies for us to accept help, to accept love, just being—in whatever state—is more than enough.
*Uhm, we know that would never be me, right?
So far over the last two decades or so, in terms of health challenges, I’ve racked up a corneal transplant, near-fatal pneumonia, getting hit by a car at the end of the same year I had the near-fatal pneumonia, and now I have a uterus full or tumors with a (very) slight chance that those tumors may be cancerous.
While I have allowed myself the occasional wallow in self-pity, I haven’t really asked “Why me?” because why not me? And let’s face it—like most people—I prefer being thought of as noble and brave, rather than whiny. I mean I hate being thought of as whiny so much than when I indict myself for such behavior I default to the British term “whinging” because posh whininess is better than regular old, feeling sorry for myself whininess any day.
That all being said, I do think “Why me?” can be an important question, if you can resist the move toward self-pity or blame when answering it. In my case, I think one of the reasons these things happen to me is because I have a gift for articulating them. I can write about the tension inherent in the caregiver-patient relationship or the loss of identity you feel when your body betrays you or what it’s like to have to make decisions about fertility as a single woman of a certain age. Especially with the fibroids issue, it’s been somewhat amazing to me how many women I’ve now spoken to who have struggled with the tumors, with the heavy periods, with the shame that can come from those heavy periods. Yet, until I was diagnosed myself, I wasn’t really aware of how epidemic they were among women my age. I’m actually the perfect person to go through this because I can give voice to the experience, I can bear witness for others who may feel they are alone in their grief, their shame, their fear.
I have long thought that while my writing was a way to see me through my own emotional and physical crises, that the work was also there for the other, for the woman who was waiting to be seen and heard, to know that she was not alone in her suffering, to know that what she was feeling was legitimate and could be articulated. I think about how often I have recognized myself in a piece of writing—the loneliness of the young Jane Eyre, for example—and I hope that in some small way as I write my way through my physical challenges, I am creating a place for someone else to recognize herself.
I do not mean to sound like a Pollyanna, or a martyr. I do not want to suffer. I want to at all times feel 100% healthy—emotionally, physically, mentally. But if by documenting the days, the weeks, the long shadow times when my well-being is disrupted, I am helping someone else, well, then, I guess it’s a good thing that it’s me. Why me? Because I have the gift of feeling out loud, and that, I hope, for someone else, has made all the difference.
Twenty-three days still to go till I have my uterine surgery and I’m beyond ready for it be April. I’m ready to have my wound be healed up, I’m ready to not look pregnant any more, I’m ready to be exercising again and working toward my weight loss goals, I’m ready to not be worrying about where I sit for 10 days of every month and having to cancel engagements at the last minute cause I’m woozy from menorraghia, and I’m definitely ready to buy new sheets and have my only worry be that they’ll become ink-stained because I insist on writing long-hand in bed. I’m also ready to have my brain back. Currently it’s abuzz not only with my usual to-do lists for work, but also “write down French Press instructions for Mom” and “schedule someone to help with laundry and making the bed” and “make an e-mail blast list for people who’ll want to know how surgery went.” I’m also ready to be rid of the low-grade anxiety that starts my heart racing at the oddest of times, like when I’m trying to enjoy an episode of Bones and one of the characters whips out a scalpel.
In other words, I’m ready for life to return to normal. I keep cautioning myself, however, that I won’t actually feel normal, or more precisely, that, for me, normal doesn’t mean asymptomatic. I’ll have lighter periods if all goes well (and maybe no periods at all if the only option once I’m on the table is a hysterectomy), I’ll be slimmer, and I won’t be chronically exhausted. But I’ll still have trouble breathing on warm moist days, I’ll still occasionally have trouble not breathing heavily while walking uphill no matter how diligently I’m working out, and I’ll still occasionally get dizzy on those days when both my allergies and my asthma are conspiring a to keep my intake of oxygen to a minimum.
I wish I could say I am ready to just accept my battered body the way is, but I’m still struggling with that one. Even before the fibroids became an issue, I found myself frustrated and angry whenever I had an asthma attack. Sure I knew I was incredibly blessed to still even be breathing and above-ground. Sure I knew that an exacerbation of my lung issues were par for the course during pollen-heavy or humid times of the year. But still, I’d convince myself, on the long stretches of days that I felt great that I was finally well. That the next time I went back to the doctor, she was going to tell me to ditch my inhalers and stop taking the laundry list of medications that is usually way too long to fit on the “what medications do you take” part of any medical intake form.
I wish I could tell you that after the surgery, I’m going to return to living with grace. And maybe some days—hopefully most of them—I will. And as for the other ones, I’ll just keep limping through them till grace kicks in again… as it always does.
Thinking about empathy today, which dictionary.com defines as “the intellectual identification with or vicarious experiencing of the feelings, thoughts, or attitudes of another.” Empathy can be so difficult when we’re in the middle of a crisis, but yet that can be the time we most need to have it. I’m somewhat anxious about having my mother stay with me for two weeks while I recover from surgery. She’s a super nurse, and it’ll be comforting to have someone there who understands about wound care and gives a heckuva sponge bath. What my mom’s not great at is understanding that her “my house, my rules” applies to other people, by which I mean I do get to say how I sort the spices and how I want my vegetables prepared. All I can think about is that I’ll be too tired and in too much pain to have to watch my tongue and do all the myriad behavior adjustments that most of us do as grownups when spending time with our parents. I realized today, however, that I needed to put myself in my mother’s shoes. She’s having her routine disrupted for two weeks, she’s watching her child suffer, and I can’t imagine that though the circumstances are entirely different, she won’t occasionally flashback to the last time I was in the hospital, In fact, this whole apartment is a reminder of that time—she and my sister moved my belongings in here while they were still waiting for me to wake up from the ventilator. She bought me the bed I recovered in then and will recover in now. Yes, I will be going through a lot physically, but we’ll all be going through a lot emotionally. In other words, we’ll have a lot of time together for me to work on my empathy. And maybe I need to print out this blog, and keep it by my bed for all the times I forget that’s what I’m supposed to be doing.
My relationship with my mom is difficult. She left me with my grandmother in Guyana when I was just three months old so that she could move to New York City, where the public hospital system was heavily recruiting foreign nurses in the early 1970s and through the 80s. True, she did leave so she could give me a better life. And I can’t imagine how she had to steel her heart to leave her newborn behind, an infant she wouldn’t see again except in photographs for nearly three years. It’s not really an unusual immigrant story. And it’s the story that has formed who I am as an artist—I am always excavating that loss, how it has informed every relationship I’ve had since, how it accounts for relationships I cannot seem to start or maintain. Even after four decades, I’m not sure my mother really understands quite how to love me, or even what to make of me. I’m sure I still seem like a foreign object to her. But sometimes, we do connect, and it is clear she is my mother and I am her daughter. When we’re talking about jewelry or perfume, when we’re being smart alecky and making each other laugh on the phone. She’s coming to stay with me for a few days after my surgery, and I’m somewhat anxious. Will this be one of our good times, or will I be counting down the days till she heads home? What follows is a piece I’ve been working on for several years now, about my mother and me in the wake of my hospitalization for pneumonia.
“I saw what a child must love/I saw what love might have done/had we loved in time.” — Mary Oliver
The comb moves in fits and starts through the tangled inches of hair, preceded by the moist shhh of detangler. I sit: my hands have forgotten how to weave braids and even the plastic comb’s weight is too much for the needle-bruised forearms. It is early February. I have been 36 for a month. I have been sick with pneumonia since Thanksgiving, falling from not feeling quite right to walking pneumonia to eight days of a ventilator doing the work my lungs forgot or were too tired or simply didn’t want to do. Even now, the nasal canula leaks oxygen slowly down my nasal cavities to the tender airways to the weary lungs.
After weeks of not eating and not moving, after weeks of lab tests that have bruised my arms the color of eggplant, after consultations by a clown car’s worth of doctors, my muscles no longer work. I can sit up only with the mechanical, imperfect help of the hospital bed. Despite this, the latest nurse has announced that if I don’t comb my hair, she will cut it off.
In a photo from early December, my face glazed with the happiness of my first published book of poetry, my hair hangs past my shoulders, blanketing my neck in loose, glossy ringlets. My mother has stayed out of my hair since I was in second grade, when she discovered that half a thick braid was gone, lopped off in a panic after my awkward attempts at coming my own hair like big girls had left it in what seemed an untamable knot.
My mother’s hands have always seemed to me the hands of a nurse, firm but distant. Now they rake the comb through my sloppy skein of hair, untangling, before weaving the weary strands into several small braids. I sit mutely, comforted by the insistent tugging and scraping. In my mother’s sure fingers there is an antidote to the callousness and carelessness of nurses and aides. “Why can’t you walk?” they ask suspiciously, resentfully even, as I call for assistance in using the bedpan or need my diaper changed.
I have written about my mother and me and illness before, an essay about the cornea transplant in my left eye, a dear friend taking the role of mother. That time, everyone asked, “Is your mother coming for the surgery?” She did not offer, and I did not ask: I didn’t know how to ask those things.
But now, she is here. As her nurse’s fingers have bathed me, rubbed lotion into my steroid-swollen fingers, we have relearned the clumsy language of need. We are back to the beginning—baby powder, sponge baths, a daughter literally reborn. That conversation continues even after I am moved to a rehabilitation center where the occupational therapist insists I comb my own hair to regain the strength in my arms, the dexterity in my fingers. I will roll from side to side, inching my sweat pants up my thickened legs. I will struggle to put on my shirt without getting tangled in the cord that still connects me to oxygen. I also will ask my mother to comb my hair every day, let her mow new paths into my scalp. My mother will braid my hair. I will relax into her hands. We will see what love might do, and we will love in time.