My Mother Tells Us

images

My mother tells us, “There was a bird on the lamb.”

We’re thinking, Why was a bird hiding from the authorities? What did he do? Or maybe a bird was hitching a ride on an actual lamb, suddenly innocent and childish. She glances out the window, throws her hands in the air. She starts to laugh, so we do too.  Either scenario is funny, really. Until she accuses us of laughing at her and her frustration becomes palpable. In half a minute, Limb. Oh. There was a bird on the limb. 

It was spring’s first robber, she says.

Here we go again.

A wasp emerges from my mothers mouth.  I hear its wings flutter against her palate, then chatter against her teeth as she tries to hold it in, knowing it is wrong. Its pointy feet walk across her tongue and she must say it.  The thin crepe of ancient skin covering her arms, like a wasp’s paper nest, foreshadowed its emergence. A wisp was what she wanted, a whisper.   The soft relay of a granddaughter’s wish, not pointy feet.   Not the lawless discourse of old age. Not the involuntary sputtering of random words. 

I point out that 90 percent of her words are ones she intended. Citing statistics is not helpful. Logic is out of her reach. She only hears what she did not intend to say. Most of the letters are usually right, I say.  Still she is irked and beaten in equal measure.

One morning, when I was 3 years old, I awoke to a horrible smell.  It is my earliest memory. In a rented house at the Jersey shore, the only vacation we ever took, I called and she came.  What is that smell?  Oh dear.  It was me.  All those blueberries I’d eaten while we watched the crabs spar on the bluestone patio, reappeared in my pants in the morning.  I was hosed down and the blueberries were off limits. Crab I could eat, but no more blueberries. Mom’s request that I, “Take the garbage to the crab” dredges up that memory.  She looks defeated.

My words.  I can’t find my words.  I talk nonsense.

It’s okay.  We can usually figure out what you mean.  And even if we can’t, you say it right a few minutes later and we all have a good laugh. Your becoming a comedian in your old age! Don’t let the wrong word stop you – you’ll be a teller of fantastical stories!

Don’t sit on the beetle!

I freeze in mid squat. A second later comes, Needle! Needle! 

I don’t want to sit on a beetle or a knitting needle so its all good, I tell her.

When I was 5 we made a snowman on the picnic table.  Just she and I.  I was special.  It was delightful.

When I was 7 she marched me down the street and made me apologize to another child for something I didn’t do.  I still haven’t forgiven her. 

When I was 11 she helped me complete my epic science project, a bench-scale desalinization plant, decades before the term climate change was coined, well before it would occur to anyone why you might need to desalinate sea water. We finished at 2 a.m. on a school night. I recall it being fun, but as a parent I can’t imagine how that memory could possibly be right.

When I was 20 she left me alone to become myself.  Like all parents should. 

She always said just the right thing, using all the right words (except of course during “the apology incident” noted above). A golden rule I learned from her, which has served me well: If you can’t say something nice about someone, don’t say anything at all.

I figure I have about 35 years before a wasp flies out of my mouth unintended. Or maybe a beetle will emerge, prying open my lips with its long proboscis, like my mother’s shiny gold knitting needle.  It will evade the first robber of spring, who would surely try to snatch its iridescent wings. The beetle and the blue crab, fast friends in search of a blueberry patch, will meet a whispering wasp on a lamb on the lamb! 

When my random words start to fly I will tell the best stories. 

Advertisements
Posted in Truth | Tagged , , , , , | 4 Comments

All I Was Able To Do

All I Was Able To Do was published in Memorial Sloan-Kettering’s 2018 Visible Ink Anthology.

All I Was Able To Do

I’m a tall man so I had a good vantage point. An ocean of people poured out before me, around me.  No – not an ocean; there was no ebb and flow. We were a river, flowing in one direction: away from all we owned, all we knew. We may never go back. We knew this, but didn’t want to know it.

I noticed a boy running ahead, pushing past. A bit later I noticed him again moving in the other direction, against the flow, jostling an old woman as he passed her. I turned and looked after him, this boy of about five years, but he was out of sight in an instant. I thought, he doesn’t know any better than to try to go back.

In late afternoon we made our way to the banks of this human river. On the sidelines we could rest for a moment and spit the dust from our mouths. I rubbed the powdery layer from Nadia’s thin golden arms. While Anisa was emptying the pebbles from their shoes I watched the people flow by. Had their husbands been detained? Had their sisters been raped? Had their homes been bombed? Yes, they answered with their downcast eyes and plodding steps. It is not normal for children to see dead bodies everywhere they look. And so we also left.

Then I saw the boy again, first moving in one direction and then reversing course. From here I could tell that he was aimlessly moving through the torrent of people, utterly alone. He seemed to me a helpless animal, madly running in every direction. I dove into the migration and snatched him into my arms. “Don’t be afraid. I’m going to help you,”  I said, or something of the sort. He didn’t resist, just gasped as the tears began to flow.

His name was Sayyid. It was easy to fall in love with him and we did so instantly. Anisa used her hijab and Sayyid’s new tears to wipe away the dusty tracks of older tears.  Impossibly long lashes fluttered about his black eyes, casting wispy shadows on his cheeks. Like butterflies come to drink his tears.

We thought of his family – first losing everything by leaving, then losing Sayyid by having left. If we were his parents, what would we do to find a lost child? Would we go back, assuming he had fallen behind, or keep going, hoping he would move forward in his search for us? There were no authorities to ask for help, no competent ones. Anyway, we could not leave Sayyid with anyone. As I said, we’d fallen in love with him.

Our destination for that night was a camp seven miles away. We decided that of course we would find Sayyid’s family at the camp. He told us of his mother and two younger sisters. About his father, Sayyid had only one word: gone. I hoisted him onto my shoulders and we merged back into the human current.

Nadia announced her pleasure at finally having a baby brother, if only for a few hours. Her enthusiasm faded upon her realization that Sayyid would occupy my shoulders, soundly slumped over my forehead, for the duration. Anisa’s back was a poor substitute. “Too bouncy!” Nadia declared. But with miles still to go, she settled in. With our precious cargo we moved slowly.

I was unable to save my country. Forced to abandon my home, my possessions. I was unable to convince Anisa’s sister to come with us. I am unable to ease Anisa’s suffering, to erase the atrocities young Nadia has seen. There is so much I am unable to do. But I am able to help Sayyid. I am able to carry him on my shoulders. I may or may not be able to find his family. And if we do not find his family I am able to carry him to safety, and in my heart for the rest of my days.

It was dark when we arrived at the crowded, dirty camp. Urine soaked my shoulders and vomit soaked Anisa’s. A shadow ran to us, a baby in each arm. Sayyid’s mother gripped her son, wiping her tears with the back of her hand. For a moment, in his mother’s arms, Sayyid was safe. But I knew he was not safe, only found. It was all I was able to do.

Posted in Fiction, Uncategorized | Tagged , , , , | Leave a comment

Does This Count as Gardening?

IMG_0592

Me with a random tree I met on 8/4/14, during the thick of things.

Does this count as gardening? In closing an email, a friend wished a pox on my allergies and happy gardening to me. That short salutation prompted me to wonder whether the activities of last weekend qualify as gardening.

Once a year our town hosts a branch pickup. We don’t usually put out anything, opting for the unkempt look of a leaf-covered lawn and flowers growing on our (old) roof.  We harbor an assortment of free-range trees growing in unconventional places, such as through the middle of a rhododendron and at a 45-degree angle from under our shed. But this year’s storms took their toll on our flora, forcing us to participate.

So, does this count as gardening? Hacking appendages from trees to whom I’ve previously spoken kind words? Trees whose smooth gray bark I’ve sincerely stroked? Trees whose exposed roots nestled our fairy houses, with their lush moss floors, seedpod walkways, and horticultural delights? In my mind’s ear I could hear their muffled cries.

OLYMPUS DIGITAL CAMERA

One of Cameron’s fairy houses at the base of the copper beech. Note triangular stone door, extensive landscaping and leaf-lined pool with grass blade slide.

During my harvest of fallen branches, due to my downcast gaze and my visor-clad head, my view was obscured as I bent over and I slammed my head into a rock-hard branch. Now it was me who was crying.  Who could blame the majestic copper beech? Fletcher, that’s who.  He gave it a contemptuous, “if looks could kill” glance, that said, I’ll deal with you later. Who gives a dirty look to a tree!? He had never hugged it once! He had never marveled at the mottled shades of green that appear on its silver trunk only when it rains. He helped me to a seat on the patio, where I stayed until my vision was back on kilter.

We focused on the biggest problem, the 200-foot tall red cedar with multiple dangling branches. But a rusty bow saw snapped, then a hand saw lost a screw.  It was a comedy of errors. Fletcher made a trip to Home Depot and returned with a chainsaw. This just got real.

I watched him stand on our new, twenty-two thousand dollar roof and wield the chainsaw toward nor’easter-mangled tree limbs, which dangled precariously over that roof. Don’t get me wrong – I was concerned about Fletcher as well as the roof!  I suddenly wondered whether I had the requisite experience in tourniquet deployment. This is a man who fell off a ladder and broke his thumb two years ago, and who occupied the same bed in the ER three times in a single summer.

IMG_1035

I peered up at him, sun in my eyes, wondering how the EMTs would get him down off the roof, wondering whether the flat roof of our cinderblock house would make a good heliport for the medevac.  But there resulted a shower of sawdust, not the bloodbath I feared. Although our grill was nearly toppled, our roof was neither scathed by falling red cedar limbs nor marred by a runaway chainsaw. He even made it down the ladder safely.

Later in the afternoon, I went to give Fletcher the ETA for dinner but could not find him.  My immediate assumption that he was bleeding out somewhere was contradicted by the chainsaw lying idle near the wheelbarrow. Turns out he was wrestling with a vine behind the shed.

We talked about cutting down the nearly dead dogwood tree, the one that had held the swing that had held our children, but we ran out of daylight and energy.  And if truth be told, we mostly feared the wrath – both kids were home.  I’m sure the copper beech was a bit nervous hearing the motor on that chainsaw, hearing us discuss taking down its neighbor, the dogwood. Fletcher suggested that a particular copper beech branch needed to be taught a lesson. But I prohibited him from engaging in revenge pruning.

I also spent a good amount of time looking at what used to be my vegetable garden, last tended in 2013. Weeds had snagged the chicken wire fence and pulled it into a distorted heap.  I strained to unshackle the fence, to pull a few posts. I envisioned it smaller and with more flowers and herbs. Yes, I will till my garden again, with the assistance of Fletcher-powered tools this time!

 

Posted in Truth, Uncategorized | Tagged , | Leave a comment

Expressed Desire

two-peas-in-a-pod-deeply-in-love-and-very-happy-vector-6531822

Expressed Desire is a poem I wrote that was included in the 2017 Roosevelt Artists Collaborative book, a collection of works by various Roosevelt artists.

Expressed Desire

Permanent Press

and Curly Queue

their potluck

simmered

from dusk ‘til dawn

 

In the midnight hour

Tried and True

and Loose-y Goose-y

had a heart to heart

then

a mouth to mouth

 

Knock Kneed and

Hamstrung

hunchbacked

like peas in a pod

just a smidgen

pigeon-toed

until the crack of dawn

 

(After publication I couldn’t stop myself and added these bonus stanzas!)

 

Rubbing elbows

Swear to God

and Grease Monkey

went down that road

to hell in a hand basket

heard, saw, spoke

no evil

from here to eternity

 

Mr. Tambourine Man and

Mr. Bojangles

threw caution to the wind

into a tailspin

on a bicycle built for two

Posted in Fiction, Uncategorized | Tagged , | Leave a comment

It’s Groundhog Day

33113259416_7407906907_z

Image via Flickr courtesy of V.A. King

It’s Groundhog Day. That seems like maybe a good day to crawl out of my hole. My last post was on the day after election day, over a year ago. Frankly that day I wanted to crawl into a hole. Many of us did. During 2017 I stood by while many of my friends donned awesome pink hats and sparkling white lab coats to stand up for women and science under siege. I’m a bit ashamed that I was only there is spirit. But we all do what we can, and I just didn’t have it in me. It was all I could do to chop wood and carry water.

When someone has a blog that suddenly goes silent, “distant” followers can only wonder why, especially if the blogger is a cancer patient. There are people whose blogs I follow who have gone silent. I wonder: are they are alright? Has their cancer come back? Or did they just get bored with their blog now that they’re well and back in the rat race. But I don’t even know these folks, so who am I to ask. All traces of Kristina, who I posted about back in August of 2014, are gone. No more blog. The book she published is no longer in print. I suspect the worst and am sad about that. When a blog goes silent, as silly as it sounds, it brings everything back front and center. No matter how well I am doing it makes me realize that it still might go south at any point. And then, poof, my blog and I would be gone too, leaving distant followers to wonder.

Even though I only have a tiny number of followers who I don’t actually know, I wonder whether they’ve noticed that I’ve dropped off the radar. Do they wonder if I am ok? Well today’s post is just to say, yes I am fine. I’m really well, actually. Although I haven’t been posting, I have been writing and even had a few things accepted for publication. And mostly I have not been writing about breast cancer! So over the next few days I will find the time to post a few things from 2017, and will hopefully post more regularly. After all when I started this blog my intention was to write about more than just breast cancer and now, 4 years after my diagnosis, I am more than ready for that.

Posted in Uncategorized | Leave a comment

Chop Wood, Carry Water

Speechless, yet so much to say. I don’t have the energy or the eloquence to add my voice to the din, nothing to say that isn’t already being said and too sad and disappointed to even try. I found this beautiful essay helpful.

BREVITY's Nonfiction Blog

14324288_10155236661220558_5376449924283212640_oWe woke up and everything was different. Maybe we woke in the middle of the night, tried not to check our phone, checked our phone anyway, and spent the hours before dawn in a bleak haze, waiting for the moment it was late enough to decently call someone. Maybe a call came—your mother has died. Or, it’s time to let the cat go. Or, our country has elected a demagogue.

Maybe we woke to the memory of yesterday, the doctor saying, Let’s discuss your options, our lover telling us they’ve found someone else—found her, in fact, months ago. All we want is to go back to sleep, back in time, to the moment before the disaster, the break-up, the crash, to the moment of sweet unknowing, when everything was still OK.

How can we write? How can we read?

How can we possibly address the page with our life…

View original post 651 more words

Posted in Uncategorized | Leave a comment

When I first met Fletcher

When I first met Fletcher he spoke a language that was as foreign as that thing between his legs. Not that thing (get your mind out of the gutter), his bike. It was sleek and lightweight, like no bike I knew existed. Cadence, peloton and derailleur, he said. Lead, filly and fetlock, I replied. What I rode was furry and four legged. Temperamental, strong and fast. The effort and reward was not in the distance, the climb or the sprint, but in the staying on, the balance, the going with, gracefully. While he was just sweaty when he spoke his language, I was sweaty, dirty and smelly when I spoke mine.

I also knew a cool language my father taught me as a child. He said goggles and lanes, he spoke of stroke and free and fly laps. And other languages I taught myself: I said endorphins, kilometers, pronation and, if truth be told, shin splints and planter fasciitis, orthotics and RICE. After a few decades, on fifteen degree, snowy mornings, tadasana and namaste rolled easily off the tongue, much easier than Yak Tracks.

Horses moved me, both literally and figuratively. I was buoyed by my father and by water. Running made me strong but hurt me. Yoga made me stronger and healed me.

Over the years I’ve been immersed in Fletcher’s culture, and advanced my fluency in his language. I can hold a line, ride a wheel, clip in and more importantly clip out. I understand the physique of a climber vs. a sprinter, the role of the domestique. I know enough to comply when he suggests another layer, booties and knee warmers on what seems like a perfectly warm spring day. Together we spoke it through chemo and through radiation. We spoke it during the spring classics, and now through the Tour De France.

then……………………………………………………………………….now

I spoke my native tongue with a neighbor for a few hours the other day. I hadn’t ridden in about five years. Dressage, she said. Diagonal, I replied. It was awesome. Just like riding a bike, you never forget. I vow to speak it more often.

We admire those who speak multiple languages, and I’ve tried to get Fletcher to be multi-lingual. But some prefer to go deep instead of broad.* My skills in each of these are conversational while Fletcher’s fluency in his native tongue is dissertation material. He says hill repeats, intervals, and century. While I can say, “have a nice day” and “where is the restroom” five ways, in his one language he understands dialects, can diagram sentences, critique the literature.

As I write this he is talking to himself for 30 miles in 95-degree heat while I, more sensibly, put on my bathing suit.

CW3A1238.JPG-20569 gran climb1

*Plus he doesn’t like to get wet, is convinced that he looks funny when he runs, and would have a roomful of yogis in stitches.

Posted in Truth, Uncategorized | Tagged , , , , , , , , | Leave a comment

So how am I?

So how am I? How am I, really? Now that I am exactly 2 years out from the start of my treatment, a time that felt like armageddon, its a good time to reflect on where things stand. I’ve just completed a portion of a periodic survey about breast reconstruction, for research in which I agreed to participate via Sloan, and writing about the survey seems like good context for an update.

The Sloan survey asks about the character and intensity of my pain, offering words like shooting, throbbing, sharp, and about 10 other adjectives that I’m glad not to be experiencing. From 0-10, I am happy to give them each a 0. But there is no single word in their survey that describes my physical state: the sensation that a rock is tethered to my chest, making breathing deep while sitting erect feel like a tedious athletic event. It’s hard to refrain from pulling and pushing at my breast when in mixed company, a habit I’ve developed, with the encouragement of my therapist, in an effort to free myself from scar tissue’s grips. But by the survey, which offers no option for comments, I’m doing just fine.

The survey also asks many questions about how satisfied I am with my reconstruction, both look and feel, from every perspective possible, and how it has affected my self-confidence, mental health, and ability to fully participate in daily activities, whether clothed or unclothed. Here my answers reflect satisfaction, but again I’m frustrated by what is not asked. There are no questions about how much longer it takes to dress in the morning, evaluating each choice as to whether it accentuates the unevenness of my breasts, which oddly seems different each day. I also don’t want to give answers that would be negative reflections on the work of my doctors. I know that my outcome is not just my reconstruction, but my reconstruction nuked with radiation that continues to affect all my tissue around my implant. If it’s not perfect it’s not the fault of my plastic surgeon. There is no place on the survey to say that, still, 2 years out, most days are good but some others are bad. It is also hard to compartmentalize my reconstruction and consider it alone without linking it to my total cancer experience including medication side effects, odd things like blood blisters on my tongue, and recent inexplicable exhaustion.

And my answers are skewed by consideration of some alternatives. For example, there is a question that asks whether I would make the same choice for reconstruction again. Of course I answer yes. But it is a question that throws me because it affirms my fear that it could happen again, and prompts contemplation of what things would be like if I had not had reconstruction, thereby hurling me down the path of second-guessing. And, there wasn’t really a choice, was there? My choice was between bad and worse. Again, it’s hard to compartmentalize on the reconstruction part and say yes I’d do it again without feeling like I am somehow saying: Cancer, again? Sure, bring it on.

Finally, when I’m answering the survey I tend to paint a rosy picture. I can’t explain it other than to say for every issue it asks about, whether pain, self-image or depression, I can’t help but be thankful to be alive. Yes I would do it again. Yes I can deal with the tightness. Yes I can find something to wear that will camouflage my unevenness. Yes I can deal with depression, with obsessing that every odd physical sensation heralds cancer’s return.

Here’s what I would say if there were a comments section in the survey: This survey may help Sloan get a 30,000-foot view of reconstruction outcomes on thousands of patients but it should not be assumed to accurately reflect the experience of any single patient. There are things that I experience that you don’t ask about. There are questions that I could answer with both a 1 or a 10 depending on what day it is. I lie on some answers because the questions seem to try to provoke disloyalty to my doctors. You remember them: the people who saved my life! I feel very strongly about this in particular, maybe to an irrational degree, but it demonstrates how inadequate the survey is: you survey-bastards will not get me to betray them and have me admit to being dissatisfied with their work. They did their best when I was at my lowest. The survey forces simple answers to questions on which a whole blog post can barely scratch the emotional surface.

When I agreed to participate in the research, back before the start of my treatment, it seemed like answering periodic surveys was the least I could do, and I remain glad to do it if there is any potential benefit. Indeed, I’ve learned over the past few years how much I’ve benefited by the agreement of those treated before me to participate in clinical trials. As a scientist I understand that this survey is well designed and the only possible way to collect unbiased, objective data from thousands of patients. But as a human being, cancer patient and breast reconstruction beneficiary, my answers on the survey don’t begin to reflect my total reconstruction experience.

So how am I? Really? I’m fine. Really good, actually. At 2 years out I’m way better than I was a year ago and I truly expect to be better yet a year from now. On February 13, 2014, during my mastectomy, a record-breaking blizzard raged outside. On February 13, 2016, as I do yoga I watch the wind scatter a few flurries across the patio. That pretty much sums it up.

IMG_1218

Roosevelt, NJ February 13, 2016

Posted in Truth, Uncategorized | Tagged , , , , , , | Leave a comment

“♬ Julia’s Sweat Shop! Julia’s Sweat Shop! ♬”

“♬ Julia’s Sweat Shop! Julia’s Sweat Shop! ♬” Julia sang her little ditty as I huffed the goose down out of my nose. It clung to the dry skin on my fingers as I threaded the needle.

A week earlier she showed me her new down jacket. “It’s nice but too short. You’ll be cold. Exchange it for one that covers your hiney,” I told her. The child who never takes my advice returned the following week with another down jacket, this one almost to her knees. “I need you to make it shorter, to mid-thigh,” Julia announced. Me and my big mouth. I didn’t know whether to laugh or cry.

I have a love/hate relationship with sewing. I have clear memories of admiring my Granny’s expert handiwork and growing confident under her patient tutelage. I know it’s in my genes, not just because my sister is a sewing prodigy, but also because I’ve made tailored men’s shirts, pants and sports jackets, along with dresses, baby clothes and too many curtains to count.

But the last few times I attempted to sew the process was painful. I literally burst into tears trying to sew piping, which I’d made, into the seams of pillows I was making out the world’s slipperiest crushed velour fabric on which Julia had hand-painted beautiful designs.

elmsplk.jpgalkoj.jpg I didn’t get a photo of the jacket before she left for NYC but here are the pillows that made me cry.

Since then, I am averse to the needle. The words “Just cut it and sew it under,” “Make it thinner on this part,” “If I cut this off you can just sew some elastic on, right?” all make me cringe.

But Julia is quite a bully persistent and, realizing this was a battle I was likely to lose, I found myself contemplating exactly where one would cut the coat so that the bottom would line up with the zipper and the pockets wouldn’t hang out the bottom. I thought about how one might finish the inside hem and how to integrate the lining. What I didn’t think about was exactly how unruly goose down might be.

Upon the discovery that we had no black thread my heart did a little dance, thinking I was off the hook. But Julia called her Grandma who had plenty of black thread. Damn. Since there was no saying no at this point, while she was fetching the thread I made the cut. I slowly, steadily fed the discarded few inches into a ziplock bag, yet I still had small bits of down floating around me the following day at work. A week later Laila revealed that the secret is to wet the down. Well in hindsight it’s obvious that if you need advice on how to wrangle goose down you should consult with a Norwegian! Da!

By the time Julia returned I’d found some iron-on seam binding and sealed off the edge, ready to sew up the hem. Julia sat nearby to keep me on task, as she wanted to wear the jacket back to NYC within the hour. The pressure was on. My sewing machine groaned, threatening to seize up as it sometimes does, somehow sensing my rushed anxiety. I was getting irritated. That’s when the Sweat Shop song started, and she started filming me with goose down stuck to my arms. Next she held up her phone, blasting the song Wind Beneath My Wings: “♬ Did you ever know that you’re my hero? ♬”    Between Julia’s Sweat Shop ditty and this spirited finale I couldn’t even be mad at her for making me sew! The jacket doesn’t look half bad, and at least I know she’ll be warm this winter.

Posted in Truth, Uncategorized | Tagged , , | 5 Comments

Last swim of the summer

In this concrete vessel of cool chlorination

The water held me up,

Tirelessly resisted my strokes

From end

To end

And again.

All summer, the early morning sun peeked over the trees

And spilled daylight on my wet head.

But it was the alchemy of low afternoon sun

On this late summer day

That transmuted plain water into

A brilliant white purple mercurial elixir.

I floated there alone for a long while.

Last swim of the summer

– Perfection

last swim of summer

Posted in Uncategorized | Tagged , | Leave a comment