Saturday, August 9, 2014

Chronic Sorrow, Chronic Hope

Over bento boxes, a friend and I discussed the complex psychology of parents with ill and disabled children. She spoke of Simon Olshansky's "chronic sorrow" theory (1967) in which parents of children with developmental disabilities continue to revisit the "loss" of the child they thought they would have, the gap between what they have/can do and what could have been, a form of chronic grieving. His theory has been applied more broadly to parents with children who experience many forms of chronic conditions. Chronic sorrow is neither depression nor strictly grieving. It's interspersed with peace and happiness, as well as the positive integration of the child into family life. Chronic sorrow cannot be cured by "acceptance" and has nothing to do with the Kubler-Ross stages of grief.

I hadn't been aware of the theory, but it makes sense. At the time, as I was dipping vegetable tempura into soy sauce, I replied that I didn't know if I experienced it. We discussed the ways in which a family's experience of disability/loss varies. For example, her son became disabled as a teenager. If I had experienced that situation, I know I would experience chronic sorrow. After all, the person you've come to know for 14, 16 years, suddenly changes. How can one not feel a definitive loss?

We never knew Robert as a fully developed person. The dystonia manifested suddenly when Robert was a month past his first birthday. Our entire experience of Robert's personhood and emerging personality has taken place in the context of his illness. I know I experience a sense of loss, but it's very subtle, shape-shifting, and I can't put into words what this means.

I told my friend that the circumstances of Robert's illness, the fact that he had no diagnosis, shaped our emotional response. Of course, at the onset and certainly through the first year, we were devastated; however, the lack of diagnosis counter-intuitively produced much hope. I didn't know that we would find a cure. I didn't expect anything magic to happen to revert him to a normative child. But I've experienced the emotion of hope as a constant presence in my life from the beginning of the experience. I will say that I've had the most difficulty with friends and family who are unable to accept as valid my emotional experience of hope. (For a take on friend and family bewilderment at chronic conditions, see this article.) 

Do I experience chronic stress? Am I quick to anger? Do I sometimes break down? Absolutely. On the bus to Philadelphia, I contemplated my inability to relax. Hyper-vigilence has become a permanent mindset. Anxiety becomes a coping strategy (until out of control): anticipating (what anxiety is) the possible scenarios when approaching a Robert-related problem is often worth it and allows me to identify work-arounds, complete all paperwork with diligence, etc. I slept for part of the afternoon today simply because I wanted to take advantage of the feeling of relaxation before plunging into my own work again.


The circumstances of Robert's illness, its manifestation, were a gift of sorts: I had to get to know my son as an outlier individual; I had no other choice. Therefore, my/our habit of celebrating his personality, his accomplishments, his inclusion, his happiness became organic to our mode of living. My husband had, at sixteen, lost his father to a heart condition. Even from the time we dated, he'd tell me how the experience left him unable to cry any more. He was grieved-out. I learned a lot from that: for me as well, there've been limits to grief. Robert presents unusual challenges in coordination of care, and when I feel sorry for myself for too long, I tend to dismiss that emotion as blocking my ability to get things done. If I get things done, I can write--and having another activity, a set of personal goals, certainly helps me psychologically.


A focus on the "positive" doesn't make either myself or my husband any stronger than anyone else. It's just a byproduct of how we came to these events, this life. I freely admit that having nurses available to do the bulk of Robert's daily care has been an enormous relief. We've needed a break from that grind--changing diapers and administering medication is a grind. I'll also admit that each of us is floundering a bit, trying to figure out how to re-shape our parental roles because so much of what we did and how we interacted with Robert revolved around physical care-giving. I've no doubt that we'll soon make our way through this transition. 

When we received Robert's diagnosis in 2012, I went through a period of grieving--not just for the hardships Robert had had to endure, but a sense of loss in my own life: goals unfulfilled, lack of savings, concerns about my daughter's well-being. Yet it turns out she's just fine. Now that she's 14, we can discuss what happened to all of us. That Robert's disabilities were present in her life from the beginning has meant she simply developed with those limitations and opportunities as part of her baseline. None of us are psychologically scarred: each of us feels the pressure of limitation vis-a-vis the regular world, yet caring for Robert forces us into adaptive and creative modes. We are extraordinarily resilient. We may even talk to each other more than other families do--often we are confined to the house, so, like Jane Austen characters, conversation and intellectual exploration through it becomes entertainment. Robert listens in and we try to include him as best we can.

But loss. Here's how it happens with me. When I look at those early photos pre-illness, I often cry. I wish that Robert could have walked and talked. Yet those photos have often served as an important touchstone for me, reminding me that there's no difference between his humanity then and now. (The photos interspersed here are a set taken in San Diego that serve always a reminder of the before that preceded our after.)

Eventually, practicality steps in, reminding me of the genetic origins of dystonia. The disease was present at birth, he would never have escaped it. I can change nothing. 

Because I've experienced Robert's life in the manner detailed above, I give little thought to the milestones in my siblings' and friends' children's lives, other than congratulations. Their experiences are simply no point of comparison with Robert's. 

I used to like to travel, though. And I used to love to change apartments, houses, all that. Once, my idea of a perfect life included an "away" or vacation home. I absolutely adore browsing floor plans for New York City apartments in the Times magazine. I love open houses or imagining what an interior might look like of an interesting home I drive or walk by regularly. 

But if I think about any of that, another thought pops into my mind: we could never live there with Robert. Walking today through the city's leafy neighborhoods, a mix of old townhouses and newly renovated small apartment and condominiums, I looked at a particularly interesting facade and thought, wouldn't it be fun to live there? Immediately followed by, oops, can't. 

Regrets, I've had a few
But then again, too few to mention
I did what I had to do and saw it through     without exemption
I planned each charted course, each careful step along the byway
And more, much more than this, I did it my way

Monday, August 4, 2014

Paradigmatic

I've always been the person who could multitask endlessly. I kept lists. I worked two or three things at once in my head. The definition of high-capacity: that was me.

When I was teaching at the secondary level, many years ago, a senior colleague whose second child had finally left home (she was reveling in her freedom) expressed perplexity at the considerable resentment she felt when asked to perform any of her administrative tasks as head of the department. I said, maybe it's connected psychologically to your sense of freedom from family constraints--why are people still asking you to do things for them? She looked at me, surprised, and said, that's it!

Two years of crisis, transition, and discovery management for Robert--all the while, well, squishing my writing needs into little crevasses of time--has left me not wanting to do anything else but write this summer. Each time I need to make a list of tasks, no matter how small or manageable or easily solvable, the capable part of me disintegrates into a helpless state of overwhelm.

I deal with this by becoming unreachable: shifting from one mode of communication (these days there are so many!) to another: Facebook, Twitter, email, text, phone. Of course, this results in endless frustration for those close to me. I've been triaging emails for months now, with a guilt-inducing silt-sediment-type set of emails I want to return settling into a muddy mess at the bottom of my inbox. It's a bit like the sketch from Monty Python and the Holy Grail, "Brave, brave Sir Robin," who promptly runs away.

How do you do it?, people ask. Well. By dodging and weaving, I guess.

I wrote to a friend earlier today about Robert's communication needs, saying my approach to this has become highly deliberative. After months of studying him at the machine, doing whatever the hell he wants (who am I to tell the kid who can't effect anything in his world, but can press those keys with his eyes, that he really ought to buckle down and focus?) has been a quiet assessment of how he moves among pages and what he seems to be trying to tell us or what interests him.

Also, we will be re-engaging with both a dystonia clinic in Boston and RGI about moving forward with analyzing Robert's genomic discovery and how that might allow us to rethink potential and existing treatments. Just as Robert's health crashed, we were in the middle of an email conversation with various specialists from different parts of the world on what they knew about dystonia 16. It's not that they knew what to do, it was in the questions they wanted to ask. "It" meaning the attempt to understand the variant alleles at a scientific and conceptual level.

Which is why I've become so fascinated with theoretical physics, especially quantum mechanics. Physics at that level becomes the pursuit of a way of asking questions or determining the right questions to ask as much as it is the pursuit of answers themselves. A balance of the qualitative and quantitative. I've come to understand that data and/or "answers" are only valuable or interpretable under certain conditions.

That's not the way most people think. Inputs and outputs. Hard work = deliverables, advantages, success. Invest money wisely and reap a return on investment. Rare disease, experiments, medical research, none of these work at that conceptual level. These quests are intellectual and are part of an entirely different paradigm than the garden variety of assumptions/results paradigms upon which the social, financial and political worlds operate. In addition, the input/output paradigm is welded to a value/waste paradigm, an unfortunate marriage of Calvinism and capitalism.

And, I believe, this fundamental misunderstanding of paradigm difference creates fundamental misunderstandings about disability, rare disease, medical care and medical research. Once, I resided primarily in the world of your ordinary citizen. I remember driving Robert to the hospital that first day his illness presented and feeling that I would walk away with an answer. That day or within days. That I didn't and that I couldn't at the time explain effectively to others that A does not always lead to B, that A sometimes leads to C or D and backtracks to B, created significant interpersonal havoc. I was uncomfortably aware that some people, although they might not say it to my face, thought I was deluded or self-centered or even irresponsible.

One of my poetry advisers would say, you've got to stop building straw men, meaning that I needed to stop thinking defensively in my work, as it was marring the art. She was right, of course, but the habit of mind of those of us who deal with rare disease daily is the creation of straw men. It's the hazy way people talk to you, ask you leading questions, say hmmmm at odd moments. We can sense those straw men out there, but they rarely have the guts to reveal themselves.

So as I dodge and weave in order to make time with my writing projects, I feel a pressure of non-specific origin out there. A force not yet quantified, not yet measurable, but a pressure nonetheless. If it were my kid ... I'd be working full-bore on communication; on finding a cure; on hectoring researchers and doctors; on using every resource at my disposal.

And here I am writing. Doing what I need to do for 60-90 days.

The psychology of those of us who deal with rare disease and disability long term can vary. I know all too well what it's like to throw our family's hat into the research and discovery arena. It's freaking confusing and emotionally wrenching is what it is. Answers are relative. I need not to jump in wildly, flailing my arms, expending energy in all directions. What are the right questions to ask? Within what framework will I begin my inquiry? I can, of course, change that framework as data and discussion shift direction. And this is not developing a "plan"--of action or anything else. This is preparing the mind and the heart to walk back into that borderland between qualitative and quantitative, into speculation, hypothesis, and procedure. I need to fortify and prepare.

Saturday, August 2, 2014

Darth's Breath


Back on June 7, Robert's birthday, he wanted to go on a family hike. So we headed to Great Falls, Virginia, with its accessible trails and views of the rapids. I'd offered him multiple choices, including shopping, which he loved, but, no, his face lit up at the thought of a hike. The kid loves the idea of a challenge. And he was delighted to spend time with not only us, but his sister. 


We had a party for him and relatives on the deck in our backyard later that afternoon. I tried to make the cake somehow tread that line between child and adult--he turned 17. What's better than chocolate shavings made to look like the wreckage left by a Transformer backed into a cake corner by police and SWAT teams? although he can't eat, Robert wants a cake: the toys on top are always for him.

Robert received many gifts. Among them, a 5-inch Darth Vader, one of those stuffed figures that dangles from a clip, all the better to hang from the vest of his wheelchair. Before his tracheostomy, Robert used to make breathing sounds that, at first, we called his "scary breathing noises," but eventually dubbed his "Darth Vader breathing." The trach put an end to those, but he still loved the mini-Vader. When pressed, it made the trademark breathing. My mom, I think, joked, sounds like Darth Vader needs a suction! I added, yeah, maybe Vader needs a trach. Robert laughed soundlessly, his whole body shaking, until we thought he might choke. 

A few emails with my cousin Amelia, whose daughter has had a trach since birth and a mini-trach (left over medical supplies from the old days in the Briggs household) arrived in the mail. 

Life moving at the speed it does, I finally fulfilled my promise:

And Robert laughed again, that whole body, wide-mouthed, closed-eyed hilarity. He's discovered how to press the toy between his elbow and the wheelchair vest, from which it dangles. So, suddenly, once again in our household we hear it: hhhaaaaaahhooooo. Life is back to normal.






Friday, August 1, 2014

August Darks

Most years in early August, I re-read Amy Clampitt's poem "The August Darks." You don't hear very much about her anymore--her work received a lot of attention in the mid-80s and early 90s, before she died of cancer in the mid-90s. I own her first three books--her debut collection The Kingfisher appeared when she was 63. A feminist heroine of sorts.

I don't know why I don't read her very much now. Alfred Corn, in the New York Review of Books, said her work showed "baroque profusion, the romance of the adjective, labyrinthine syntax, a festival lexicon," all true and all of which still appeal to me. Who knows?

By August, summer's end feels near. I have mixed feelings about summer: Robert's worst health crises, including the initial one, have been in the summer. The season feels both freeing (smaller volume of laundry, no coats) and a constraint (no school, less childcare). When we could get away to Vermont, it made summer better. I never know whether I'm happy to see summer go or not.

Summer's end feels near precisely because dark seems suddenly earlier, although the days have been shortening incrementally for weeks.

Stealth of the flood tide, the moon dark
but still at work, the herring shoals
somewhere offshore, looked for
but not infallible, as the tide is,
as the August darks are--

The poem, I suppose, gets at that uneasiness about summer and its fruition, liveliness, all that emotional baggage that I share.

as the first boat slips out
ahead of daylight

into the opening aorta, that heaving
reckoning whose flux informs the heart-
beat of the fisherman--poor,
dark, fallible-infallible

I love the image of the waterway to the sea as an "opening aorta," that way of shifting the figure from the exterior natural world to the interior natural world of the body. The August darks as an internalizing of whatever summer meant--fallible, mortal, human.

Then Clampitt turns her focus to the illusion of effort, like the illusory qualities I sense in summer:

sanguine as with labor, but effortless:
as is the image, far out, illusory
as the dark's edge, of the cruise ship
moving, seemingly unscathed by effort,
bright as a stage set

for the miming of the tiara'd swan's danced
dying, the heartbeat's prodigies of strain
unseen, the tendons' ache, the blood-
stained toe shoes, the tulle
sweat-stained, contained

She channels that Yeatsian sense of aging and desire and remove in "Sailing to Byzantium." But more than that, she peels away the illusion of art, the way Yeats rarely did, revealing the effort--much the way anyone could scrape at the surface of our lives (how do we do it?! and seem so happy?) to reveal the strain and the effort beneath. Robert isn't an illusion. Our happiness isn't an illusion. Neither is our love. But the skill to make it look effortless--a societal necessity? A release from the pressure of others' worry? An art.

Sometimes people "worry" about you without offering help--which is fine, but then their worry seems like a burden handed to me. I'd rather not carry it. Or some people want you to shoulder their own concerns about disability, fear of disability, fear it could happen to them. And part of asking how you do it is asking you to take that burden of fear from them--release them from the possibility it could happen to them. Again, I'd rather not carry it.

There is, indeed, an art to raising a child with disabilities. A way of putting up a front, a facade, that isn't measured by truth or falsity. If you represent your life too truthfully, no one really wants to hear about it. It's too frightening, too much. If you absolutely falsify it, all angels and shining love, people secretly hate you for showing them up.

No, you must be where the August darks are--that slip into the aorta between the fallible and infallible, the body and the world-around-you that will persevere for some time after you are gone. Into the space where lightness and dark change places, which really isn't twilight. It's an edge, "the dark's edge" Clampitt calls it, out where effort (the fallible) and the image (the infallibility of art or love) meet. A place few people ever go--a "workplace covert as the August darks are, / as is the moon's work," lines you'll have to read for yourself when you look up the full text.

Clampitt takes us out to the other side of silence--another physical realm, the new physics, the unimaginable and unexplainable in which you might reside as within a new comfort zone, without fear of the unknown, only wonder:

out where the herring wait, beyond
the surf-roar on the other side of silence
we should die of (George Eliot
declared) were we to hear it. Many
have already died of it.

And that's where we caregivers reside, if you really want to know. How we do it.

Thursday, July 31, 2014

Atomies and Space-Time Considerations

This summer, after a chaotic two years, I'm back to writing in earnest, pushing forward on five different projects. On the one hand, it's a relief, a welcome break from the trauma of just trying to keep Robert alive. On the other, the fact of Robert's diagnosis tugs at me. Part of my mind remains focused on what should be done next.

The odds are long, but the research climate is rich with opportunity: so many projects, so advanced the opportunities in telecommunications. The possibilities dangle in front of me--waiting. I know of story after story in which the parents of a child with a rare disease are able to have some effect on the condition, whether amelioration, cure or research. Many of these parents have means or special skills that I'm sure even they would say give them better odds of success.

But rare remains relative. Robert's cohort is 9. And he's the outlier. The most recent (and heart-warming, encouraging) story in The New Yorker by Seth Mnookin, "One of a Kind," describes the efforts of two sets of parents from very wealthy families to solve the mystery of their children's homozygous NGLY1 disease. I'm exceedingly glad for both families--and for the other families they're helping. The biggest advantage the Wilseys and Mights have is a freedom from everyday financial concerns. When you know your extended family can help you to support the needs of housing and healthcare for a child with disabilities, you know you can pay your mortgage, you know you have groceries, and you know your other children will go to college, that's a significant advantage in terms of time and resources.

Our resources at this point feel shaky by comparison. We do have good contacts and connections in the science, medical and research communities, but we lack the means to instigate and support research. We're in the process of stabilizing our own finances: one of us working and one of us on point to manage Robert's increasing care needs. How to network to find other families is, at the moment, beyond me. And, even then, with a heterozygous allele pairing on PRKRA, Robert remains an outlier in terms of any other sort of PRKRA research. An interesting anomaly.

One Boy. I thought of that while walking home from dropping Robert at his inclusive theater class. The sun was shining, construction was ongoing, tall buildings sending steel beams into the sky. Earlier, I read a book on quantum physics while drinking my morning coffee in bed. Something about imagining the scale of atomic parts. Something about the nucleus of an atom being like a grain of sand inside a 14-story building, that superstructure being the relative space occupied by the atom's other particles, electrons and so on. Small is relative, too.

Spectrography defines the light fingerprint of an element by measuring the spectrum given off by electrons as they jump from shell to shell, excited and turned on by whatever energy is being applied to them. We don't see them; we can't. Yet these particles leave traces of themselves in the wavelengths of light around us--and we can't know which electrons will jump to which shell of the atom itself or why, only measure the probability of the density of such a gathering of minutia on any given band. We don't so much know as calculate the probability of knowing--that's the initial understanding I have of the way quantum physics imagines a world and the energy of such, all within the estimable boundaries of mathematics as a form of language rather than a measure of absolute knowledge.

That the boundaries of science are permeable, elastic, without absolutes gives me some hope. Everything is relative--from Aristotle's teachings on rhetoric to particle physics. If the world really were absolute, then One Boy wouldn't matter. And I mean that literally--he would have no matter, no substance, nothing to him would accrue. Maybe that's why fiscal conservatives have become linked to the anti-science baiters: the financial world thrives on winners and losers, spread sheets, bottom lines. Science is relative. Money becomes a god. Gods must be absolute. But then I remember junk bonds and derivatives. Is relativity simply a form of cheating, whatever the application?

Which is why the concept of One Boy has an uneasy glow. Why does one person matter? One person with as unique a biochemical profile as anyone might imagine. Or not. Robert is, of course, more like any of us than he is unique. He's still human, after all.

I can't explain why one person matters. I don't know that an explanation exists. The quanta in quantum physics simply assume a measurement for the unknown and undefinable exists. Is it the draw of relative likeness (a positive charge) or the simultaneous push and pull of a negative charge, the distancing empathy of his difference?

Sometimes Robert becomes that grain of sand, a nucleus around which we orbit, but more distantly than we realize. I'm in one of those times--thrilled by a sense of limited freedom, an overexcited electron popping from shell to shell, exploring the space around me, always dimly cognizant of the electromagnetic forces that suggest my path or paths. Sometimes an electron just needs her space, right?

But then I circle in closer--in chemistry and physics that would mean I would be in a low-energy state, I guess, but that's where the regulations, if not actual rules, of science cease to apply. Or the figurative language begins to break down. One of the two, or both.

If the parts of an atom have a scale like that 14-story building, and the atoms of a baseball would, to scale, take up the mass of the world, how do we find each other, attract one another, parse the parameters and direction of motion and intent across the inconceivable volume of space-time?

Yeah. Something like that. That's how it feels to have a child with this rare diagnosis, even rarer still, an anomaly within an anomaly. Yet somehow, as much as worlds are pushed apart by events or energy, worlds are held together by these forces. Meaning that there may be no grand pattern, but surely there are patterns--perhaps not simply patterns that can be found, but patterns one could make in terms of assessing the matter of One Boy.

And that's where I am: jumping from shell to shell, energy state to energy state, depending on the type of energy (pressure, temperature, emotional resonance) applied to me. Oh, right, and most of all guilt, which is the emotion I feel when I indulge any of my own needs. Thirty days of focusing on writing and I'm an electromagnetic mess, to say nothing of my hair.

In the last two years, I've begun to realize I cannot do any of this alone. I've been the atom in the parenting element that emits the weakest light, apart from all the other atoms in the belts with the most activity. I would say I'm like this because I learned so early how hard the work was with Robert and I thought I could spare other people some burden. So charged with resistant energy such that I could bounce through the medical universe looking for a diagnosis that it became hard to accrue mass with even other friendly elements.

I doubt I have this right, but the Higgs particle--the "god" particle--exists, unstable, in order to break apart and by so doing cause other particles to have mass. So matter can be affected positively by the instability of what surrounds it--in fact, is brought into being by instability, difference. The Higgs bosun (proof of the Higgs field) was first theorized in 1964, the year I was born. Proof of its existence was determined by the Hadron Collider in 2012, the year Robert was diagnosed. Coincidence? Matter? Direction?

What do I want? What would matter, for me, for Robert? My goal can't be finding a cure--that's too knowable for this situation. My goals have to be finding better treatments, better ways for Robert to engage in communication. The Dynavox presents an answer to this last, but its various parameters are still under study--basic communication, yes, but only under certain conditions. Still theory.

Now these goals have to acquire mass. The energy source is the ask. And I'm reluctant to ask because the other energies involved are time and money, which exist in a version of Newtonian physics, in the visible world whose laws we can measure, whereas the answers to Robert's condition lie in particle physics, about which regulations we can only speculate. That's a difficult ask in an era when many like to computate "waste" rather than understand matter.



Friday, July 25, 2014

Retrospect: Joy

Yesterday I sifted through old snapshots, many of them photos my parents had taken of Robert at the age of two or three, just after his dystonia manifested. I could read, now, the most puzzling aspects of his disease: why his arms were postured a certain way, the puzzle of him occasionally sitting well or reaching out, his ability to stand with support. Everything made sense that hadn't.

I found, too, ten or more photos of his first birthday, about six weeks before the sudden onset of his dystonia. These were hard--Roger and I look happy. I look well-rested, well-coiffed. Robert sits and grasps and crawls. He picks up a plate, pretends to drink from a cup--a dish set he's just been given. He lifts the bed of a dump truck. For a half-hour or so I allowed myself to feel sorry and sad as if anyone could have changed anything, as if the disease might never have manifested, each of these impossible.

What this pity boiled down to in the end, the last steam and hiss of it, was a sadness that I hadn't been able to convince many people that Robert, as a person, was there all along. The fact of his physical devolution meant anyone could speculate whether or not he was "in there," what his gestures, actions and reactions "meant." He was robbed of the ability to display intent. If I'm angry about any aspect of these long years, that's it.

Looking at the pictures, it was hard for me to believe that anyone had doubted his basic intelligence or humanity. In every shot, his eyes are bright and directed, taking everything in or shining the beauty of his person outward toward others.


Most of all, I was struck by his sense of joy. Of all emotions, expressing that one is something his body allowed--even now when his facial muscles have less and less tone, his body folded and settled on itself. It's in the eyes. That's my gift from him, every day. Whatever I can do to support that sense of joy going forward is my duty absolute.

Wednesday, July 23, 2014

When the Night Nurse Can't Make It

Sometimes I like being awake at 3:30 am. Sometimes I don't. There's a beauty, though, in wakefulness in these hours. Tonight, no moon, no starlight, cloud cover--the dark becomes then opaque while other times it's not and shadows and shapes well up. Cool, but humid. Crickets buzzing in the background, even in Bethesda. The fireflies went to sleep a long time ago. Fan on inside and windows open--AC upstairs promised back by Tuesday, although I'll miss that merger of indoors and outdoors that only seems possible late at night during sleep.

Robert's pulse-ox has stopped slipping off his thumb and making its soft chiming five-beat alarm: oxygen saturation holding at about 98% (bright red digits), pulse at about 70 (bright green), although it spikes upward often enough as though he may be having interesting dreams. Back-lit glow of the feeding pump, whir of the motor overwritten by the fan's low churning sigh-without-cease. Faint beneath that, the variable interrupted hiss of the air compressor, green light of the heating button, blowing moistened air through the trach collar.

For once, everything's quiet outside--human noises, that is. The teenagers and 20-somethings with their booming abstract woofers and swish of cars running the stop at the corner at the bottom of the incline have fallen asleep somewhere. The early morning shift workers aren't yet on the road. The neighbors' lights are all off. The cats have completed their rounds of fighting and mating for the night. Throngs of rabbits are most likely munching away at everyone's backyard garden in silence, as they usually do--they never seem to sleep and stare at you in the daytime, daring you to commit the apparent felony of shooing them off. And if you do, a hop or two away and a pause, barely feigning concern.

I might say the world seems far away, but it's never far away in the digital age. I know what's going on in Gaza. The poets have spoken their bytes in the New York Times. Everyone will live forever in the cloud--if pixelation holds a patent on vibrance, if the physicists' theories bear out along with the reprinted words of the early modern poets that life is, in fact and indeed, just a dream or an illusion of one.