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Monday, November 26, 2018

Gratitude is a verb



---------- Forwarded message ----------
From: joan hocky <jthocky@gmail.com>
Date: Monday, November 26, 2018
Subject: 
To: joan hocky <jthocky@gmail.com>


Gratitude: The state of being grateful.
The quality of being thankful; readiness to show appreciation for and to return kindness.

'Used in a sentence: Let me express my heartfelt gratitude to you.

Gratitude is an idea and ideal that is the central tenet of Thanksgiving and the opportunities the holiday and the days surrounding it provide to reflect on what it means in our lives, to name and list that which we are thankful for, but in everyday life it is not a concept but a verb, something we act on or from.

We often talk about it like it were a probiotic or sunscreen - something we know we should do because it's good for us, and that with some effort and daily reminders we can put into our routine.

Floss, stretch, feel gratitude. Saturday  at Shabbat services we read from a siddur [Jewish prayer book] designed for those with cognitive or developmental disabilities (although I don't think V understands any of it he enjoys the music and although he leaves and walks around the shul a few times in the hour service, he seems to enjoy being there and the familiar rituals of the morning.): I wake up each morning and thank God for another day.  To me that is the essence of gratitude, when it is so ingrained into our daily life that the moment we arise we are flooded with appreciation at being alive.  It makes me think of that Einstein quote that we can live life as if everything were a miracle or nothing is, and the spiritual path is clearly the former.

And yet, while gratitude is powerful and important it's not a panacea or cure all  It doesn't prevent us from feeling anger or sorrow or frustration or any other of a range of difficult emotions that people feel everyday, although some more than others. I don’t like when people tell others to 'just be grateful' as if that had the power to make the rest of our struggles dissipate.  It gives us perspective but not freedom.

I've been grateful when V woke me up at 5 am all weekend, as anytime after 4 seems civilized, and all those thousands of days when he'd be up at 3 or 3:30 felt so isolated and hopeless, like being on a rickety boat trying to wait out the hours until the rest of the world awoke. I've been grateful for Starbucks Italian roast I can make to help my body keep up with my mind  in the early hours - once I wake up that's it; like V I rarely can go back to sleep.  And while he now can spend some time alone there is always the possible  risk that he will get into something and reek havoc so I need if not both eyes then at least one ear listening in case a mattress is flipped, there are 4 am munchies,  it's a little boring after awhile, why not unroll all the toilet paper or empty all your drawers of clothes.  In his world teens are able to have fun the same way young children do, with utter abandon and no thoughts of the aftermath that grown ups will have to contend with.

It sounds like an excuse for not writing, but just having that ear, that 10-20% focused on someone else just in case makes it hard to concentrate and get much writing done these early morning or the rest of the day on holiday weekends when we tend to have little respite . (Why I’m finishing this Monday am)  It is nothing like being alone, or being off duty.  I write little drafts I email myself  or scrawl thoughts into notebooks or look up words, like gratitude.  But I don't have the opportunity to dive in and write, and the fact is that much of my limited creative time this week has gone into hosting Thanksgiving here - a first in all my years in this house. We always go to my brother’s, stay overnight in Philadelphia and spend a little time with some modest Black Friday shopping and walking around the city. 
 It's a longstanding nice routine. My brother and sister in law are wonderful hosts and they are set up for company in a way that we never have been, with a beautifully set table and room to spread out before and after and that large finished basement for V, who doesn't really like most thanksgiving food except for the pie, of course.  Hosting this year  made me aware of how infrequently we have people over and how when we do it involves paper plates and utensils used for outside barbeques or my annual ladies who latkes Chanukah event.  I'd love to have people over more often but not having many friends it's a challenge to get people to come over even though I think we're very hospitable: lots of great food and a warm welcome to all. I know all too well what it's like to not feel welcome so I do all I can to have everyone feel how very grateful I am to have them grace me with their presence, which I mean sincerely, not with the snark with which it is usually said. So having people over for an inside sit-down dinner makes us all too aware that this is not something we get to do, as much as I wish we did.  We order another set of  plates from Target and get some more break-proof glasses (the set of monogrammed wine glasses that were a wedding gift have long been gone, every single one of them broken along with all but one of my set of Fiestaware mugs).  We buy the glasses and wooden folding chairs on sale at World Market, a fun store because it has a fun combination of food and furnishings.  I'm sad that our lives haven't been social in the way I enjoy so much but I'm even more grateful to have the opportunity to be a host.

I am happy to spend every spare moment in the week cooking and cleaning and clearing out clutter that accumulates like leaves in autumn - no sooner do you rake them up than the wind provides another helping.  It is all part of a life I am in equal part grateful for and disheartened by. I am thankful for this Thanksgiving with my family.  For food and shelter and sitting around a table together. I am grateful to wake up each day to my messy challenging life, although I wish it was different at least it is and there's nothing better than being here to experience it.




Sunday, November 18, 2018

Old Dog Days

I found and am posting here what is basically Ruby's origin story, in terms of how she came to be our fifth family member.  It was from 9 years ago and one of my favorites posts.

Reposting it because first, it's her anniversary the week before Thanksgiving. And she just became very sick, suddenly off balance and unable to walk without falling over or to hold anything down, which is rare for a hound dog that has enhanced smell and thus an interest in all things food. At the emergency room the day after the snow storm, when roads were clear to get her there, we receive the diagnosis of canine vestibular disease, which is like miniere's disease/vertigo (also known as old dog disease : (   The other possibility is a brain tumor, but we are not going there until after we first pursue the more curable  option.

The treatment is pretty straightforward: Dramamine - what I remember taking on my first flights abroad (I recall wonderful long windows of sleep on trips to Beunos Aires and Rio, which are fantastic places to visit because they are among the world's most beautiful cities with the added bonus of no jet lag). And time. Two days after her hospital stay she is definitely still off her feet but seems to be making some progress. She's eating, which is a good sign. She wants to be outside sniffing, which is an essential activity for a hound dog. But she still has to be carried up and down the stairs, gets wobbly after walking half a block, and tilts her head sideways due to being so off balance.


Going out for a walk sans my girlfiend feels weird. So much in 9 years that she has helped us through, a grown-up therapy dog bringing unconditional love and endless reasons to laugh at her idiosyncrasies, which tend to be less chaotic or labor intensive than her brother's. And in those 9 years 2 boys have grown up.  For Ruby, as for the rest of us, growing older is tinged with anxiety for the future. Her eyes are getting cataracts and she has trouble going up and down the stairs and her breathing seems heavier. Yet for both of us I try not to dwell too much on the slowing or weakening of systems, always grateful for aging given the alternative...

Most of my difficulty with looking over the past 9 years is how different this time has been than I ever could have imagined: far more spent on the nouns and jobs I haven't been able to quit:  constant caregiver, unpaid project manager, barely adequate housekeeper (our motto: presentable, not perfection) and not enough on the verbs, the doing: writing, performing, facilitating, community building, cooking, connecting... I'm in my late 50s in a culture that constantly talks about nurturing fresh young voices and it pisses me off that there's no interest in nurturing all the voices that have been put on hiatus or downsized due to extenuating circumstances when we have so much to say and teach.  And why do old dogs need to learn new tricks? What if they're really good at what they do, and they're doing just fine?  Ruby is just as loving and fun and endearing as the first day I met her.. Age is nothing to fear or disdain,  we still want and need the same things. Fresh air and good food and other beings who care about us, a sense of purpose even if it's just to sniff and explore, solving unseen mysteries.

I'm rooting for Ruby, one old gal to another.  For now, she still is carried up and down the stairs to go out and pee and equally importantly, to smell the grass and trees and the leaves sprawled over the ground mingling with the remnants of snow, the lingering scent of many animals before her. Those still young and scurrying by, those like us just starting to struggle, to show our age in ways completely natural in the cycle of life.  I sit by her side and tell her we love her no matter what, as she's told us the same thing thousands of times.  What a good girl.  Here's hoping she's going to be fine. But no matter what we're there for her.



https://jth522.wordpress.com/2009/11/28/je-ne-sais-quoi/

Friday, November 9, 2018

a riddle wrapped in 5 sheets, inside an enigma...and why voting matters

The post I've spent all week writing vanished, just like that.  Not a very user-friendly blog, as those of you who have tried to post comments have found. (the best advice I can give is to go on the full site, and post there. And thanks for trying.)  Very frustrating since I spent so many hours on it and finally it was all done and I pressed publish, which always feels good, and then it disappeared.  So I am going to do a  rewrite which may not be nearly as good but I want to get it out as it was so timely and time keeps passing very quickly, or maybe it's just change that is happening and time is its usual slow dance.

This past week I got caught up in pre-Election Day anxiety and obsession, what I used to describe to B as Mom's World Series - the thrill of cheering on your team and favorite players, the knots in the stomach as the score changes, the vast disappointment when star players are taken off the field, especially, like in Georgia, where the state team plays dirty.  Even this midterm election, or maybe especially the midterms, which have been touted as "the most important election of our lives."  Maybe a bit of hyperbole but it did send millions of new or formerly jaded or disinterested voters out in force. And it did end in the Democrats taking the house and a number of states, with  many players you rarely see on the field: so many women, and Native Americans and lesbians and a gay Governor, people who should have been out there long ago in force but the fact that they finally are, well, it's thrilling and hopeful and it's something to feel good about, so maybe it was the most important election in terms of better representation and a middle finger to our unstable mendacious leader.

I've had a few discussions with one of V's home therapists who thinks voting is a waste of time and energy because it's all about the money, and there's so much corruption, and candidates make promises they won't keep, and racism  underlies the defeat of those two really strong gubernatorial candidates I was so invested in, and yes yes yes yes I  agree with her on all of that and yet. Voting matters. I  have ingrained in me since birth what a civic duty it is, from my mom who worked the polls every year, and her father who said he celebrated the day he came to this country but not his birthday because anyone could be born but how many people have the courage or chance to leave their home country and everything they know for this new land of freedom?  Voting is a hard earned privilege, we often forget, we who have lived with its certainty our entire lives.

And voting matters in a way that we often fail to see, as our representatives approve and allocate funds for tunnels and bridges and train tracks and schools and farms and every other type of infrastructure or way we take care of people or land or municipalities. Even government-hating conservative seniors happily collect their Social Security and thank the stars for their Medicare. 
And the home therapist I argue with, and all of the rest of V's team - the teachers and aides and case manager and OT and speech therapist and job training coach at school - every single member is brought to us courtesy of state, federal and local agencies

For those of us with loved ones who need extra supports and services in order to live and thrive, we see firsthand every day how voting matters, that the quality of their lives and ours in turn is deeply connected to the people we elect to represent us and their interpretation of what government is for.  In better times, when people believed in the social compact - that we are bound to help each other, not as charity or a hand out but because by no fault of their own people have a range of conditions and challenges that require extra help and it is our duty, a contract we have with each other, to make sure that everyone has a safe place to live and the medical care they require and the social services to turn their lives around. At some point we will all be in need.  This is something we have had the good fortune, if you can call it that, to recognize since V's diagnosis exactly 15 years ago this week.

At our most recent meeting on the eve of  Election Day (before I spent the night glued to the screen like it was the Superbowl and World Cup combined) V's school and home team all got together to discuss the latest "riddle wrapped in a mystery inside an enigma" (a quote about Russia by Winston Churchill, who was kind of the anti-Trump when it came to eloquence) of taking the fitted sheets off his bed every night, grabbing comforters and flat sheets whenever he could get into the linen shelf  and wrapping himself in them like a burrito, and then putting on layers and layers of clothes every morning. a few t shirts topped with a hoodie and fleece and jacket, occasionally two pair of jeans, as much clothes as he could fit on his lanky frame.

I've taken to hiding all our outerwear in a locked closet so he isn't tempted.  I think of the story of the man who got kicked of a British Airways flight earlier this year because he was wearing 10 layers of clothes and think if we ever get V back on a plane he can wear a week's work of outfits and save us a baggage fee too (they'd be less likely to notice on a skinny hyperactive guy like V,  as most strangers fixate on his offbeat behavior more than anything else, like his good looks and charm and humor.)

The team discuss the possible causes for this layering. Is it sensory-seeking, and needing deep pressure? Is it his way of expressing his independence and agency? With so many people telling him what to do all the time, here's a way to assert himself. Or is it a matter of perseverating (repeating something insistently) - of still developing executive functioning skills that make it difficult to stop once he starts putting on clothes?  A really interesting conversation and I'm grateful to have us all in the same room, but it doesn't make it any easier to live with. Because at the end of the hour they'll all go home and we are left trying to solve these mysteries. alone with our struggles and the consequent social isolation when he gets so entrenched in behaviors that our interventions are ineffectual and so we stay inside with our layers and mysteries, feeding our exhaustion with coffee and toast and homemade soup and television and reading endless stories about  violence and vitriol in the news.

The stress of a mother raising a teen or young adult with autism is equal to that of a combat soldier. I know I've quoted this research before, but it becomes more evident with every year.  Mothers of teens with autism spend more than two hours more a day on caregiving, are interrupted at work three times as often, are more apt to be exhausted (as opposed to just tired), are far more likely to have financial stress and physical and mental strain, all of which is lessened or compounded based on how much needed help is available.  For those of us who care for someone with constant complex needs - a parent or partner or other loved one as well as a child -  it is absurd and outrageous that anyone would consider government assistance as a hand out that would make us lazy or complacent. In fact the threat that pre-existing conditions might at some point not be covered by insurance puts us even more on edge.  Those of us relying on Medicaid or Medicare or other supports to supplement our expenses cross party lines and attitudes. We are Republicans and Democrats; black, brown and white; low income and middle class; cynical or indifferent or deeply invested in voting.  Regardless of our differences, who we elect to represent us matters to us all. 

Yesterday we went out for a walk, V in four layers on top, only one pair of pants thankfully, although they were on inside out (that tends to happen now that he dresses himself). No one knew what it took to get him out the door, but then, we don't know what challenges anyone else faces, how difficult or grueling it might be just to get out of bed, let alone get dressed and eat.  You don't know what anyone else faces in the course of a day. But you can vote to support them no matter what. It could happen to you. It probably will.  Let's help each other out: out of the house, out into the world, out where we can feel the sun and find some happiness wherever and however we can.







Saturday, November 3, 2018

the washed and well-groomed masses

"The unwashed masses" is a phrase originating in Victorian England but we found much use for it here, especially in New York City in the same era. By 1894 the unemployment rate for all of New York State was 35 percent. In the city there were more than 20,000 homeless people. This period became known as the Great Depression in New York.

Yet one year later, in 1895, the main branch of the public library at Bryant Park was built. 

It was the best and worst of times - the 1890's saw the construction of many of NY's great institutions, the enormous prosperity and philanthropy and public works of the wealthiest in the midst of some of the worst poverty in the country's history.  Their design spoke to that disparity, in a way, as the regal public library, like many museums and movie palaces - not theatres mind you, but palaces - emerged from the noblesse oblige of the very rich, with a sense of egalitarianism ingrained in their blueprint: that for a few cents anyone could sit in a luxurious movie palace with red velvet ropes, and that it cost nothing to enter the stunning interior of this magnificent library, with its thousands of books and artifacts.


The visitors these days are anything but unwashed. they are a combination of people of all ages sitting at their computers, doing research, writing papers, working on books, and an equal or not greater number of tourists taking photos.
I spent about an hour late yesterday afternoon sitting in that glorious reading room, quite productive, soothed by its beauty and the proximity of others working nearby, only to leave and find myself surrounded by mostly foreign tourists snapping away. I took a few photos myself, but with the natural light streaming in from enormous arch windows and the small reading lamps on the rows and rows of long tables, it was hard to get the right exposure. Or maybe I just  didn't have the patience or interest at that point... it felt like a beautiful woman objectified, with all these people snapping her image. I sensed that the presence of books and scholars meant nothing to most of them, although we all were enthralled by that ceiling I struggled to capture,

It was a civilized way to end the day, one that had started with a disabled Amtrak train leaving thousands of commuters waiting with no information as to how long we would be stuck on a track.  Fortunately I had a good article in the New Yorker about Sill She Rises, a program in Oklahoma - which has the highest rate of incarcerated women in the country, which is saying a lot, given that the number of women in prison has increased 800% in the past 40 years - started by folks from Bronx Defenders, which has been representing indigent clients for the past 2 decades. The article is chock full of awful statistics and tragic stories and great work, and if i don't make it to  Pittsburgh maybe I could go to Tulsa, a bastion of social change I'd never heard about.

And being so engrossed in the article kept me from feeling my frequent alienation from  other passengers, so many with their highest quality backpacks and shoes, brands and buttery leather in another strata from anything I ever could manage.  I remind myself that these very people might have philanthropic instincts as great as the Astors; after the well-tailored clothes and stunning haircuts, they might take a big wad of that expendable income and support a really effective program for incarcerated women, or a local library or a program for new immigrants, or in some way address the enormous discrepancy between their lives and that of most people. Now more than ever I need that reassurance that there are people who really care about creating positive change, that somewhere between the greedy and the indifferent there are people trying to make a difference. I look out the window and and up at a sky which will never be quite like it is at this moment. Someone else is looking too, I am sure.  I am not all alone.
Along with every other frustrated commuter, we finally make it to Hoboken, where all trains have been diverted, and I merge with thousands on the track, dressed for work or school or some other destination for which we will all be late, all impatient but passably civil as we cram into the train, washed and well-groomed masses streaming out in all directions, racing off to wherever we need to be in a city most of us are too busy to look up or look down and notice.

 


 

Thursday, November 1, 2018

Exposure Value


Exposure Value: in photography it's a number that represents a combination of a camera's shutter speed and f-number, and something I can't explain too well or understand much better but basically, it allows you to underexpose or overexpose your image. I imagine it doesn't mean much to all of us digitally raised or
re-programmed, but it seems a good way to sum up the over and underexposure world in which we live.
Exposure: the condition of being presented to view or made known. The President has constant exposure. Most hard-working honest people have little or no exposure.
Value: relative worth, utility or importance. It doesn't matter if  you never are liked or followed or have another person say, beautiful! to your well-curated image.  We are all of value.
leaves, finally! and perfect exposure

So that's the possibly lame working title of my November novel (not really - I'm in the "rebel" category) for NaNoWriMo, which a friend told me about and which I've decided to participate in because, well, September and October went by in a horrible drought of output, except for many notebook pages of ineligible scrawling. I couldn't figure out how to fit in sitting down in front of a screen after a day of doing the same at a full-time job and commuting and the unpaid jobs of helping with V (who makes everything else exponentially more labor-intensive, like 25 loads of laundry a week...) and the ordinary stuff like dinner and papers demanding attention and a dog who pleeeease needs another walk and by the time I have free time I collapse with the daily bad news or a Netflix binge to escape it.

Like many people I don't feel like I have enough time and resent that my creativity needs to be carved into little pockets, but that's better than nothing and the only way to make that grow is to keep pushing aside everything else that I can, including plenty of time wasters that come with having endless access to screens, where reading an illuminating in depth article can quickly leads to shopping for noise reducing headphones or  getting lost in the vortex of horrific "living while black" stories (napping/shopping/golfing/swimming /studying/babysitting... there's a never exhaustive way to show your racism) which I want to keep up with, and now a bomb that has me wanting to move to Pittsburgh, where there seems to be a bumper crop of decency among its citizens..

Soooo..for the few people out there, welcome! I'll eventually get more upbeat.  Please feel free to read when and what you want -  I'll try to remember to use tags and titles, so you choose what is of interest, although as I often find when I read in print rather than on line - and one of the gifts I think we're losing by not having real newspapers - is that you can end up reading something you didn't think you'd find interesting and learning something really useful, or discovering about something or someone new.

Like Halloween,  that most bittersweet of holidays - the cloying sweetness of the candy offset by the sense of separation I feel from the phenomenon of families enjoying their walk up and down the street, kids in costumes all excited as they get to the door, in direct proportion to their ages: tweens are jaded, teens don't even pretend to wear costumes, but the little ones, well, what an awesome holiday to go up to strangers' doors and have them smile and give you candy!  I do like Halloween, it was a favorite back in my childhood of full size candy bars, an entire suitcase size bin of them under the bed I recall.

No one coming to  our door knows that we don't do Halloween ourselves, not that I need them to understand, but it's one of those things that feels isolating, that most people never stop to consider all that  it requires to accomplish this feat: the social skills to go up to a door, ring a bell, look someone in the eyes, grab a few pieces of candy or wait for the grown up to put it in your bag, smile and run off, when parents remind you to say thank you. oops, thanks! and then go to the next house....and really, why should you know what this night was like for us? That if you have no social skills or impulse control Halloween is a bad joke  I've gotten over it long ago but there's always residual grief, though we haven't attempted Halloween for years there's still a bit of sorrow and wistfulness, the remembrance of the times we tried, V in turn terrified or running inside people's homes, and you can't forewarn people - hand them a piece of paper, "please be understanding of my son with autism if he runs in your house and sits on your sofa" because frankly it gets exhausting to be an ad-hoc educator. And it can get lonely not to be part of a group ambling down the sidewalk.

Exposure Value is about the the limits of #metoo and this inaccurate sense of egalitarianism, that we all can tell our stories and have the same access to an audience. That most stories are lived and told in quiet dark rooms, and you have to take the time to notice, to open your ears and minds so you can listen.