people. make. change.

When I lived in Brooklyn there was a little park a block away that was the closest, most convenient place for the boys to play. It was run down and decrepit, with peeling paint on the equipment, but was nonetheless well utilized by local families and adults who regularly used the handball courts. Almost all of the people in the park were black and brown and working class. The more affluent white people who had been moving into the neighborhood – it was very diverse when we lived there – walked to the neighboring playgrounds in Park Slope, which were more recently renovated.

Wanting a nice public space for our neighborhood, I met with representatives of the Parks Department and found out that there actually was a large pot of money that had been allocated to fix up the park, it had just been backburnered for years because no one had made it a priority. At their suggestion, I volunteered to be the community liaison to the city’s parks and recreation agency, and set about to change things for the better. I went to community board meetings and spoke out, I met with local elected officials and convinced them to make providing their constituents a safe beautiful recreational area a priority. It was an easy sell and with some back and forth with parks and other city agencies involved with public works, it surprisingly quickly became a front burner project, undertaken with community input and completed right before my eyes. I still remember how good it felt when some neighbors said to me, “Thanks for our park.”

I couldn’t take too much credit, really, all I did was get the ball rolling on a project that had been largely neglected. But on the other hand, that was a lot for one person with no power to speak of to accomplish. When last I visited the old neighborhood, the park was packed, although I noticed with some irony it was filled not with the neighbors on whose behalf I had fought for, but mostly with well-off white families, people who likely had no idea of how different the area had looked just years earlier. The park was now listed as a community asset on Zillow and other real estate websites. What once was a gaping deficit was now a factor that led to the desirability of the neighborhood.

When we left Brooklyn and moved to our new neighborhood – it’s now been 15 years, so it’s not so new anymore – I was thrilled to see the recently renovated playground up the street. I was also happy to see that there were basketball and tennis courts and best of all, one of the town’s three public pools, which one of my fellow swimmers described to me as a little slice of heaven as he exited the lap lane the other day. But I know better than to think the improvement and upkeep that keep this a local gem just happened, or that the integrated schools we so prize in this town did not get that way without an enormous amount of input from regular citizens who had organized en masse to make it happen. But so often we don’t think about the history of a place, how regular people and organizations and politicians — despite all the divisiveness that can hold progress back — still find ways to work together to create change.

So when on June 26th, Governor Phil Murphy signed a law establishing the Bridge Year Pilot program in our state to provide students in graduating classes of 2021 and 2022 the chance to offset disruptions to learning that resulted from a lack of in person instruction in 2020, I was relieved and grateful. Because V is one of the many students who basically lost a year of school and will now have the opportunity to make up for that loss. It doesn’t mean the district will make it easy: while the federal government will pay for instruction, local school districts will have to pay for transportation and other administrative costs, so we may need to hire an advocate if our district balks at the extra expense and oversight an additional, much needed year of school would bring. 


I think of all the regular citizens and advocates who made calls to their local elected representatives, who helped to create the coalition that made this program a reality. I know that funds do not just drop from the sky, that bills do not just appear on desks to be signed, that it takes a lot of effort, often over far longer time than this initiative took, and I’m thankful for those who put in the hard work beyond the simple phone calls and letter-writing many of us partake in to have our voices heard.

When I think back to the local park in Brooklyn I feel like a different person. I was visible, empowered, hopeful. Even grappling with V’s recent diagnosis and the rough road ahead it was all so new and I still had plenty of energy for other things, for making change.

I watch more from a distance now, rooting for the infrastructure bill, voting rights, the American Families Plan. I will do my little part to support such measures: a phone call here, a small donation there, but I am no longer in the trenches. I am more consumer than producer, taking advantage of the park’s resources, using public transportation when I can, supporting local farmers whenever possible.

So I’m awed and impressed by people who stick with causes through hardship and downturns, who have the perseverance to forge ahead when their spirits are dampened. I’m more a human being than a human doing these days, and for that I have some regret. When I was younger I used to wonder why everyone wasn’t out in the streets all the time, banging on doors and meeting with others to make change that was so clearly needed to right all the injustices out there. I know now that people get burnt out, that we all have limited time and energy. Still, we can all, myself included, get a little complacent waiting for others to make the change we want to see in the world.

I hope to become more active again, to fight the ennui that has me listening and reading but not doing anything to follow the passion of my convictions; to once again follow the African proverb, “When you pray, move your feet. ” Doing my small part to make sure we all have what we need to thrive: education, housing, health and safety and peace of mind, and a little slice of heaven now and then to keep our spirits afloat.

The Two Hour Vacation

From an article in Thursday’s paper: kitsugi, a way to mend shattered pottery, was developed hundreds of years ago in Japan; it was later embraced outside Japan as a philosophy of living: “Bad things can happen that might shatter us. But we don’t have to stay broken or hide our wounds. We can put ourselves back together, and the scars we wear at the broken places become a reminder of the tragedies we’ve endured and how we overcame them — a mark of beauty in an imperfect life.” Kitsugi is a good approach to post-pandemic life, the article posits, a way to process what we’ve lost and emerge whole instead of broken.

And while we have to acknowledge that we are not fully post-pandemic — there are about 15,000 new daily Covid cases in the US, and many countries are still in dire straits — there’s so much in the news and the air about some collective endgame of summer travel and parties, the exhale at the end of a trying year. While I don’t see any open roads or beaches in my future, there does feel at least like a light at the end of this traumatic tunnel.  There will be in-person summer camp after the complete bust of the virtual variety last year, wich V totally rejected along with an enormous box of crafts sent home to a person who never met a craft he liked. The whole summer was in fact a bust, and we did the best we could with the stress and exhaustion of filling each day anew, alone on an island not of our choosing. My favorite summer activity: swimming outside – was carved out of long languid days of caregiving. But that too should change:

This year, after the July 4th holiday, camp lasts for 5 weeks with possibly a few more weeks added in from other sources. That gives V the structure he needs, and will allow me many mornings at the pool, my favorite stay at home vacation spot up the street.  It just opened for its short precious season and I am so happy to be swimming outside again, more than 9 months since it closed on Labor Day.  There are still some remnants of Covid protocols: There are 2 hour shifts; we must be masked up to enter; it’s still bring your own chair with social distance rules, which are hard to enforce in a pool. Since I walk up, I forego the chair and lay my towel on the concrete, not the most comfortable way to hang out but it will do.  

Yet the pool itself is the same: a cool and refreshing respite under the trees, a nice balance of solitary time and good people watching.  I’ve had two swims so far this season and it’s been delightful.  Sharing the pool with young and old, black and white, the fast and fit and those slower like myself, doing the breaststroke at my own comfortable pace, looking up at the vast open sky and back down at my fellow swimmers. The water isn’t as cold as it is at the start of some seasons when I can’t wait to get out and warm up – it’s a pleasant temperature, and I feel a sort of elation at the newness of the experience that I always get in June. We’re back! I think, back in this perfect happy place I’m so lucky to have.  I let my worries dissolve in the water and get into the flow of movement, the sensation of floating and not having anything to weigh me down. 

Whatever was shattered last summer is being pieced together, not artfully but manageable enough to feel that we’re a long way from where we were, that the pandemic hovers but doesn’t envelop us in the same way it did. So I work to block out what others might be able to do this summer – to be happy for them and leave it at that – and simply feel grateful to have these times in the water back and forth, back and forth, slowly healing.

Ends and Beginnings: a Dog’s Life

Nearing the End 

Ruby is remarkably content in her old age, which is saying a lot. This morning on her walk she crouched down to do her business and then couldn’t get up. This has become more common but today was the worst day yet – she literally couldn’t raise herself back up and I could see the struggle. Her hind legs aren’t working much anymore and I try to help her up, then wait until she eventually can lift her frail body. I know I’ve written before about her decline but it keeps getting worse and the elephant in the room along with the dog is this: When is the end? We will go to the vet next week to have some blood work and for him or her (it’s a husband and wife team : ) to examine her, and then we will have the big conversation.

A neighbor used to walk his dog with a contraption with wheels that helped it move when the hind legs went out and I remember wondering, would I do that? My next door neighbors used to carry their dog outside wrapped in a blanket several times a day and I imagined what that would be like. We love our animals so much and we want them to live as long as they can and when do we decide when they’ve had enough of this life? Ruby still has her nose, which means she still enjoys being outside for those incredibly sloooow walks with lots of good sniffs along the way. But so much else has failed. I plan my days around her more than I did when she was healthy and followed a routine, that is, before she was incontinent. Now I do my best to predict the times when she needs to relieve herself. She can’t have scraps we used to sneak her because her teeth aren’t strong enough to chew. She has some doggie dementia, barking at familiar people and ignoring trucks and the mailman, her former nemesis. Much of the time she naps and when she’s awake she is underfoot vying for attention, which we are happy to give her.

I have unconditional love and yet I admit that I often grow impatient with her needs, the cumulative effect of Ruby and V, these two beings I adore who require so much care. Every morning I mash up an allergy pill for V and doggie Advil and joint medicine for Ruby.  V’s is mixed with agave and Ruby’s with wet dog food.  She also has as much dry dog food as she can eat, and yet she is so thin now.  If I didn’t have anyone to take care of I could write more and travel, clean floors less and visit B more often. I don’t think people are naturally selfless, we want and deserve time to ourselves or with loved ones that don’t require hypervigilance. We all need tending, like a plant that needs water.

Ruby, like Ginger and Satchmo, the cats that came before her, does not complain about her end of life struggles.  She sometimes stumbles when she tries to get up the stairs (when he is home, T carries her up and down) and has to try again but she doesn’t whine about her aching back the way I might do when mine acts up.  I remember the cats howling with pain only at the very end, when tumors spread throughout its body for one, the other having kidney failure and it was clear it was time to say goodbye, that it was the right thing to do. But the dog is more complicated than the cats – she’s bigger, not housetrained, more dependent on her people and her diminishing abilities are more apparent.  

Ruby has been a kind of muse to me, I’ve taken her picture so many times over the years. Somewhere I have photos of her wearing my glasses with a book in front of her, with a red scarf draped over her where it looks like she’s meditating, wearing my Howl cap from City Lights bookstore.  Animals put up with a lot from us, and then in time we put up with a lot from them.  It’s a symbiotic relationship. 

I don’t know how much longer she has but the end is near and when I grow impatient I try to see her daily walks as small gifts I’m giving her, opportunities to use that snout that is at the heart of a hound dog. There are pandemic puppies everywhere we look – many are no longer pups, now young dogs with their whole lives ahead of them and I remember that so well. (See below for her origins story.) I took it for granted as we tend to do in youth. More people stop and ask how old she is because she is moving like a very ancient frail animal and I have become like my neighbors, the loyal and steadfast dog people who will do whatever is needed to keep this beloved family member alive and as well as possible for as long as we can. Animals help us heal and then they break our hearts, all part of the process of life.

———-

In the Beginning…

It’s been a momentous Thanksgiving week, in a quiet sort of way.  On Sunday, we took a drive up Rt 80 West (if you keep going, you’ll get to California, but we only made it to Warren County, NJ) to visit Aunt Mary’s Doghouse, a wonderful shelter for homeless dogs, to check out a possible addition to the family.  It’s something we’ve been talking about for a while, but in a vague “someday that would be nice” sort of way. 

Then B had a bonding experience with a miniature dachshund in August, and it  became a more regular topic of conversation.   As an 11-year-old boy going on 17, I think it became especially appealing to have someone in the house who wasn’t always asking him to do something (or in his case, not do something, like leave his shoes in the middle of the floor or bounce a ball in the house) but who could be more of an unconditional friend. 

Earlier in the year I had been researching specially trained “autism dogs”, but like most services for kids on the spectrum there was a long waiting list and prohibitive costs that kept it out of reach.  I also had come to appreciate how important it was to get a dog that would be a companion for both boys, not just a service dog for V. And the fact is that with the right disposition and intelligence,  any dog could be therapeutic, just by not talking or expecting conversation. (None of that “How was school today?  Anything new or interesting to share?” when you walk in the door.) The more I thought about it, or maybe the less I thought about it and the more I followed my instincts, it just seemed like the right time. 

So late at night when everyone was asleep I’d get on my laptop and troll the Petfinders site, looking longingly at golden retrievers and beagles in need of homes. It was like a doggy online-dating service, a long series of flattering photos and upbeat profile  (“I love long walks in the woods, but also enjoy the bustle of city sidewalks.”) and maybe a wee bit of exaggeration in the description: the 1 year old who was probably pushing 3, the svelte looking hound who in reality hadn’t seen 35 lbs for a while. But they were all utterly sincere in their intentions to find that special someone, a forever family with whom they could settle down.  And so we went up to Aunt Mary’s to meet a few eligible adoptees in the fur, with all their imperfections and quirks on display. 

When we arrived they were all standing anxiously at the fence, vying for our attention. Pick me! pick me!   It was charming and yet a bit heartbreaking how they all sensed that this was their moment to shine, to persuade you of their special gift.

Look at me! I’m young and frisky, and my coat just gleams.

No, look at me! I am a bit older, but I’m still energetic, just in a quieter, more centered way.

I will make you feel loved and content.

I will make you feel loved, content, and I’ll make you laugh! Watch me play with this shoe, it’s a riot!

I will be the most loyal friend, I will sleep at the foot of your bed every night.

I will sleep at your feet every night and I’ll even make the bed in the morning, if you just train me. I’m a very smart breed!

It was hard not to fall in love with all of them, all these wonderful creatures  just aching for a home.  It was equally challenging to determine which would be best suited for us, or to let go of preconceived ideas: that no dog could ever be as sweet as a beagle (my beloved childhood dog), or as smart as a standard poodle, or as loyal and tolerant as a golden retriever.  

But that’s one of the wonderful and humbling things about doing rather than just thinking about doing something.  You think you know what you are looking for and then get thrown for a loop.  Someone puts her nose on your lap and sweetly gazes into your eyes.   She has a scar on her nose from some past altercation and a bit of a sag in the middle from a litter of puppies; not as young or small and cute as you had imagined. But she has this beautiful brindle coat and face, and an expression that’s both alert and calm. She just has, I don’t know, that un je ne sais quoi…

I know it can sound pretentious, especially coming from someone who doesn’t speak the language, but I’ve always liked that phrase, the way it acknowledges the limitations of words. I know not what.  Uncharacteristically vague for the French, who place such value on precise use of language.  That thing I cannot describe.  But that’s the  point. There are no words, just the knowing.

And so we rode back home with Ruby the Plott Hound in the back seat; and her nose is on my lap as I write this, as comfortable as if she’d been here forever.

Fighting for Happy

Sunday I took a train into the city and the first subway I’ve taken in a year and a half to go and meet my great-nephew. He is so adorable it’s hard to put into words what it’s like being with a happy alert baby – already 9 months old, sitting up and grabbing things, pushing buttons, putting Cheerios in his mouth, what a fun age! I swear he looked at his mom and said Mama, which he says all the time but it seemed intentional. He’s even cuter in person than he is on Zoom. I realize we’re all better in person than on a screen, but for a baby this is especially so: the soft skin, the way they smell, the sounds of delight, the little hands reaching out, being with a baby is a source of such unadulterated joy, and I’m so glad I made the trip to meet him and see his wonderful family.

It’s a good antidote to home. V has been having a lot of rough days and I feel caregiver burnout especially acutely as we get closer to summer.  He still isn’t going in the yard. We don’t know yet how he’ll fare at the beach and if that or other outings will be a regular or rare occurrence.  I am determined to have more joy in my life, to not have a summer like last year, or even close. I may not be able to get away but I will find ways to enjoy what we have: a big shady yard, a pool up the street for laps, a vegetable garden that at least looks promising.  More short bursts of pleasure.

In my bi-weekly support group (Zoom of course) we go around and give brief recaps. A rough week, I tell them, not wanting to go into the details then or now. And a visit to the city that was great. I have few opportunities to share in this context, with other moms who get what it is like to care for someone who has severe behaviors or other challenges that require hypervigilance, and yet I feel at a loss for words.  The other day I broke down in tears and it felt good to have that release. But even in this setting I don’t want to be too negative, because things aren’t all bad. We all have our tsuris yet find ways to carve out moments of pleasure and that feels like a triumph for us all. I am fighting for happy I say in conclusion.  

What does that mean? It means not listening to some idea about what brings happiness (Satisfying well paid work! Great vacations! Beaches and parties and friends to enjoy it with. That last part is key though, about friends) and instead finding it in the little things. Boy, I hate that sort of advice when I’m feeling down. And yet, there is some truth to it. I realize this as I’m taking a break from the endless housework by listening to an interesting podcast and eating leftover mango curry, the spice and heat modulated by the creamy coconut milk and mango, the way the rice sops up the sauce, the crispness of fresh vegetables. It’s delicious. Activating my senses and brain after what feels like hours – it isn’t, it just feels that way – of clearing out the chaos that are the morning routines of an autistic young man and an aging none too gracefully dog. Odious morning, happy lunchtime!

And I’m trying to see the benefits of those tedious tasks. On Wednesday I Iost nearly 50 pounds and it felt great! Vietnam Vets came and took it away, 6 bags of clothing it had taken nearly a month to winnow down into the “keep”, “throw away” and “give away” piles. I was tougher this time, throwing out beloved tops that had holes or stains, giving away some really nice things I just never wear. I see myself as having fewer clothes than most women but there is that attic….the “maybe” piles go into bags and stay there, and after a few years I finally decide that “maybe” is a “no”, and let it go. Surely someone else wants a barely worn maroon jacket with great pockets or one of the five nice scarves I haven’t worn in as many years.

It was in some ways an enervating process and yet it felt so freeing when I was done.  Could I see it as an act of generosity as well as one of letting go? The things in poor shape go in the trash, the nicer things go in bags for others, and after weeks of living surrounded by stuff, by decisions to be made – should it go or should it stay? the bedroom is cleared and I feel the lightness from taking it all outside the front door, happier still when the huge truck pulls up and takes my belongings away. 

When I want to feel a moment of joy now I look at the photos I took of my great nephew, or stare at the green bean stalks growing from seed, I watch or listen to something really joyful and fun. T turned me on to this brilliant mashup. In viewing it you will understand why Fred Astaire’s favorite partner was not in fact Ginger Rogers but Rita Haworth, magnificent to look at here. Among the thousands of comments from its 10 million views are people who say they watch this every single day to put a smile on their face, so clearly I’m not the only one trying to get over rough patches. Here’s to fighting for happy with all our strength.

No News is No News

Now that the weather is warm and businesses are open I’ve opted for a short summer haircut, which means visiting the barber (a hip guy place that also welcomes women with short hair) around every six weeks.  Like many people during the pandemic I’m out of practice with the small talk that transpires in a hair salon so I let him do much of the talking. He had to close his shop for many months last year, and since he reopened he has completely stopped following the news, online, on TV, in print (although he does offer an assortment of magazine and daily papers in his shop, he doesn’t read them). I learn this as my first short cut occurred during the Derek Chavin trial of the murder of George Floyd, which I was watching on my phone.  He barely knew about the case although he was aware of all the protests that took place in the murder’s aftermath last year.  This past visit the big story was Israel and Hamas.

No news at all?! I ask him. No, he’s done with it. I don’t want to argue with a man with a pair of scissors in his hand, there’s too much at stake. Steak is more like it, or the lack thereof. We talk about healthy eating instead because he sees his news fast as somehow related, that he is abstaining from something that didn’t feel good for him. He is careful with his diet, he has a business to run and doesn’t want to feel too heavy or bloated. I try not to judge him for removing himself completely from what is going on around him, and yet I do question the extremity of his choice. What about news that affects him as a small business owner? Surely he cares about how much funding should go to help Main Street, the recently passed Relief Act, the debates about the infrastructure proposal? Whether he follows it or not the news will have an impact on him, his life and his livelihood.


I’m such a news junkie by comparison, although I see it less as an addiction and more as a civic duty to know what is going on in the world: locally, nationally, internationally. Yet the fact is he’s right in one regard: much of what I read or hear IS depressing: from India to Israel to the latest mass shooting in Indiana/Florida/California…every few weeks another gun tragedy. Whether you keep up or close yourself off, major events occur every day that affect millions of people, and local politics and national policies have a big impact on our lives. How much you pay in taxes and what you get for those taxes, proposed changes and compromises on both sides reflect a divisiveness that is wearying. I see his point. Do I really need to keep reading about the vast number of people who believe in big lies (most glaringly, that Trump won the last election)?

There are days and even weeks I try to limit myself, but I can’t see myself going cold turkey. Just when I feel burnt out on the same old same old a new story grabs me, like Naomi Osaka’s backing out of the French Open for mental health reasons and I see opportunities for important conversations about depression and anxiety, in sports and the wider world.  I find discussions that bring in diverse swaths of people around important topics. What used to be called human interest stories are called that for a reason, for all the ways news can pull people apart into their separate political camps it can also bring people together.  And in this way following the news can make me feel less alone, remind me that we are part of something bigger than ourselves, an ecosystem of other humans; it gives me perspective beyond the sameness in our lives in this household where the biggest change is the weather. Life in a bubble is dull and limiting. 

I scroll through the news on the NY Times app and skip more than I read this week. I can easily get lost in headlines that depress me: more than a third of heat deaths are tied to climate change. Another example of how devastating so many stories are. Do I really need to read the article when I know the conclusion ? And yet isn’t that important?  I like learning new things and this is how I do it: I read, and to a lesser extent watch – because I find cable news ever more slanted – programs that fill me in on what is happening around me. On topics I know I care about and also on those I don’t have as much interest in yet want to be informed of, like business and technology. Things that still matter whether they are on my radar or not.
 

I have tried to do a news fast once a week, a Shabbat unplugging of sorts but I find even that challenging. I could easily go a day and not miss out on anything so important I can’t catch up on Sunday yet it’s a daily habit I find hard to break. It’s a goal I have not been able to reach completely, yet I have been able to limit myself to a quick skim or two rather than any deep dives some Saturdays (harder to do now that the days are so long). And those days when I do take a break it does feel good, like a cleanse without sugar, something that is not really as difficult as you anticipate once you do it once or twice.

Yet I can’t imagine the detachment required to say no to the world around me to the extent that my barber has. I want to ask him more about how it feels to not know about anything going on outside of his own life and business for a whole year, but again, the blade in his hand, my head in his care, I don’t know how to broach the subject without getting too impassioned. And haven’t I taken a complete break from social media? That might feel extreme to some people. There are many attributes to it: keeping up with loved ones, sharing important information or pieces/pictures of your life, being part of groups that are helpful, gaining other perspectives. As a writer I’d have a much wider network, something I know I’d appreciate. But the endless perfect family photos; the vacations (at least pre-pandemic); the bragging, humble and otherwise; the elaborate renovations and landscaping I could do without; the travel and socializing and other things I long for…it all put me in too much of a funk that it wasn’t worth it. I appreciate people who are good at separating what is useful or nourishing from what is not, something I can do with the news far better than I could with social media. Maybe my barber too struggles with being judicious, with being more selective with what he takes in and so he chooses to shut it all out. I try to have compassion for that, for the part of his decision I understand all too well. Balance is a hard thing to maintain.

And so we talk about food, mention our kids and family, the weather. I watch as he take a little too much off the sides of my head and hold my tongue. It will grow in soon enough, and I’ll be back. I’ll know the result of the New York City primary by then, there likely will be some closure on the infrastructure bill, I’ll probably be watching Wimbledon and keeping up with a handful of other stories.  No news is no news. Not good or bad; simply a way to live without the stories that swirl so freely around us.

My Purple Thumb

On Doing Things You’re not Very Good at

Oh to be like Uncle Harold, an exceptional doctor who also grew the best Jersey tomatoes I’ve ever had, or Uncle Zuni, a distinguished biochemist who had the most prolific vegetable garden I’ve ever seen. But alas I am a humble writer with a small plot of land I’ve toiled in for years to raise a few handfuls of beans, a half dozen tomatoes, a smattering of herbs, some years a single eggplant…the yields are laughable, if you can keep your sense of humor (which thankfully I do). I don’t go out there with unrealistic expectations: I will not suddenly be as accomplished as either of my uncles were or my across the street neighbor, who has the most bountiful garden on the block, with big gorgeous heads of kale and collards every summer that make me green with envy.

Why do I do it then? Why garden if you don’t have a green thumb? Why do things we are not especially good at? Why bother? Well, first of all, we always can improve, we can learn from mistakes and do tasks a little better. This year T rented a rototiller and turned the soil; I purchased the weed cover my neighbor swears by, and a new hose and garden snake to keep the ground moist. I plan on devoting a bit more time to upkeep because admittedly I put more effort into the planting than I do the maintenance.  I can put in the labor to minimize the weeds and maximize the yield.

Yet even when we can’t get much better at what we are doing, when we are just plain mediocre or barely competent at something, it is somehow freeing to accept where we are and enjoy what we do, sometimes more so because we aren’t burdened with unrealistic expectations or the pressure to be exceptional. Of course it can be hard to maintain that attitude in our competitive world, where people often take up new pursuits with a ferocious zeal, where hobbies can become more about achievement than the lovely process of trying: a new instrument or recipe or sport.  I fight that urge and accept that I will never be a master gardener or have a perfectly tidy yet overflowing garden like my neighbor..

Because face it, there are only so many things a person can do really well. For some of us, that’s just a couple of activities, for others perhaps a few more.   I’m a good writer and cook and I make a mean pie.  I have strong listening and analytic skills. Yet for most everything else – and that includes an awful lot! – I’m not so good and in many areas not even passable. 

I almost flunked Home Economics in grade school. It was mortifying; I had to stay after class and practice sewing a straight line over and over again. My mother was wonderful at sewing and knitting and I barely scraped by with a C ( the only one I had as a kid).  Thankfully there was no grade when I took Home Repair 101 at the adult education school in town because I would have flunked for sure. Given the course title I was expecting to learn how to screw in a light bulb or fix a leaky sink but the level of projects the excellent teacher covered felt more like a doctoral program than an introductory course. The fact is as hard as I’ve tried I’m not good at anything related to home crafts or maintenance. I really wanted to be a good seamstress at 10 and a badass fixer at 40 but it was not to be. 

And there’s no reason to do things we are actually bad at. But decent? Adequate? I have awful eye-hand coordination so I can’t play tennis but it’s one of my favorite sports. I love to watch Naomi Osaka and Serena Williams and other great athletes play. I also like watching the tennis players up the street at the public courts.  They’re mostly middling at best but they sure look like they are having fun, and isn’t that the point? To take joy in returning a serve and sparring with a partner, spending an hour or two working up a good sweat. The more you play the better you get yet there’s a point at which most of us level off at some mid-range of competent. We’re amiable amateurs.    

Which is about where I am when it comes to all the activities I enjoy, from biking to yoga and tai chi to swimming and hiking. I’m fairly slow, not terribly well-organized, I forget the sequence in tai chi and still have trouble biking up steep hills. I am a C student in most areas if grades were given out. Thankfully they’re not, and we have the freedom to be just okay, and to be okay with that. And so the garden. A happy place with modest results. (No one ever embroidered that on a pillow but if they did I’d buy it : ) I still hope for more tomatoes this year yet whether I get there or not I still love having my purple thumbs in the dirt, listening to birds sing and feeling the sun on my back.

b is for behavior

Behavior:

– Manner of conducting oneself: typical adolescent behavior includes being contrary.

– Anything that an organism does involving action and response to stimulation.

Monday morning minutes before the school bus arrives, V finds a fleece lined jacket in the downstairs closet: one he refused to wear all winter and I had forgotten all about. Now with temperatures expected in the mid 70s, he puts it on and refuses to take it off. We explain repeatedly in words he understands: “It is going to be a sunny warm day. Take the jacket off!  No jacket on hot days!” But each time I say the word NO he clings to the heavy coat even more.  I give up and let him get on the bus, then quickly send an email to his teacher and case manager M explaining what happened and asking if they can help try to get the darn thing off.

M writes back that the last time this happened (yes, apparently this has happened before  – I must have blocked it from my memory :  ) he told V very emphatically: “Do NOT take that jacket off! Keep it ON!” And V took the jacket right off, a textbook depiction of reverse psychology in action. This time they are not so successful and he keeps the coat on all day. They work around it, bless them, going outside while it is still a bit cool and staying in for the remainder of the afternoon.  He comes home sweaty but smiling, with a note saying that he had a great day otherwise. He runs inside and takes off the coat, which I immediately hide in the attic with the rest of the winter stuff.

Tuesday brings more beautiful warm weather. V has refused to go out in the yard at all this spring. Three seasons of the year it is usually our favorite part of the house, large and well shaded, with ample spots to sit either in the sun or under trees and enjoy even the hottest days.  But not this year and we can’t figure out why. We encourage him repeatedly and he pokes his head out, says “No” and then comes back in.

On Wednesday I try taking a page from M’s playbook.  I open the back door and say “Do NOT go out there! Stay IN, I don’t want you in the yard!” But it doesn’t work. V wants to be outside – it’s his day without school and he takes four walks by the end of the afternoon, but still refuses to so much as step in the yard.  This is especially frustrating on the weekends when I want to garden or T wants to mow the lawn or do other outdoor activities or when both of us would like nothing more than to sit outside and enjoy the nice weather. One of us has to stay inside with V.  

Thursday I try again. I put a small bowl of chips on a table deep in the yard and when V comes home from school hungry I open the door and point.  “Chips!”  A single effective word and he runs out to his favorite snack by his favorite chair (the one that is falling apart, right next to a newer more comfortable chair that he refuses to use) and sits down contentedly, looking around as if remembering that yes, he likes it out in the yard.  But after a few minutes of enjoyment he comes running back inside and we go out for a walk. 

Unpredictable or inexplicable behaviors are common in people with autism, but the fact is we all have behaviors: ways we act  in particular situations; depending on how comfortable we are, what or how much we eat or sleep, who we are with or other environmental factors.  We act differently if we are calm or anxious, tired or well-rested, happy or depressed.  With V, behaviors are often harder to understand, as it is the outward manifestation of how a non-verbal person communicates.   He’s strong-willed and sensitive with limited means to express himself. Which leave us often guessing. Why does he suddenly want to wear the winter coat he’s eschewed?  Why did he spend several summers refusing to go in the water when swimming used to be his favorite activity, then suddenly return to it one year with no explanation? Why is he avoiding the yard this spring?

The most common technique for dealing with challenging behaviors in autism is called ABA or applied behavior analysis. Thankfully it’s not the focus of his school, which has a different relationship-based approach that we find more humane and practical. ABA presumes that there is always a known antecedent – something detectable that triggers or causes a behavior and when eliminated can extinguish the undesired action. Sometimes that works, not just for kids on the spectrum but for anyone.  If you don’t want to eat ice cream at night then don’t buy ice cream at the store and put it in the freezer.  If you want to exercise in the morning leave your workout gear out where you can see it when you get up. There are often common sense changes we can make. Don’t have jackets within reach and then V won’t put a jacket on. But why? Why would he dig into a dark closet and locate a heavy jacket he disliked all winter long and suddenly insist on wearing it?  Often there are no easy answers.
 

As a genre, I like to watch mysteries: thrillers and whodunnits with twists and turns. Right now I’m watching Mare of Eastwood, in which Kate Winslet pulls off a spot on Philly accent – quite a feat – yet can’t solve the case of who murdered a young woman in a park one night. There are a few episodes to go, so we’ll eventually find out. I have my suspicions but the fact is I rarely guess the right culprit and am usually surprised by the endings. I find it humbling and even invigorating to be surprised. I like when the last little details are revealed and the motive becomes apparent, in the best procedurals when the loose threads get tied together and there is a great AHA! moment. There’s something so satisfying about it all.

With mysterious behaviors, the solution is rarely so neat. Because V’s actions or inaction are so unpredictable in when and how they start and why they happen. We conjecture but we don’t have any solid answers. And because it is hard to know what to expect, we generally have a Plan B. If V won’t get out of the car or put on appropriate clothes or eat his usual breakfast, then we go home, we find something else to eat or do, we roll with it as best we can. Having a Plan B, and even C, however much we hope we don’t need it, allays some anxiety in making plans.

I’m appreciative that his team at school is so understanding, but complete strangers (or anyone who doesn’t know how complicated it is to know what makes him tick) not so much. I try not to care when people stare when he’s dressed all inside out and backwards or acting strange but I’ve never developed a thick enough skin for this life of ours.

It’s Friday and I try, not so successfully, to let go of expectations for this afternoon or the weekend. For now I’ve put the coats and jackets safely up in the attic. I will continue to try to get V in the yard without pushing too hard. It’s only May, who knows what June or July will bring? Something old may stop yet something new may start up, it’s hard to predict. I try not to see behavior as bad or good but simply what is, how we respond or act or move through life, each in our own unique way.

Reimagining Normal

I had the pleasure of going to a BBQ with some of my cousins this week, with good food and conversation and familial warmth in the cool dusk.  I jumped at the invite, knowing such gatherings will likely be few and far between as the days continue getting longer and warmer and the summer season starts. I am embarrassed to admit that ever since Biden’s speech introducing his relief package, where he predicted that things would get back to relative normal by July 4th I’ve thought, “Oh no! Not that!” Yes, it’s been a hellish year but do I really want things to go back to ‘normal’, to ‘fess up to how socially isolating normal is even in the best of times? 

I’m hardly alone. Research shows that the number of people who perceive themselves to be lonely has doubled since 1980, and that those who consider themselves socially isolated has reached epidemic proportions. [Loneliness is the feeling of being alone, regardless of the amount of social contact. Social isolation is a lack of social connections. Social isolation can lead to loneliness in some people, while others can feel lonely without being socially isolated.] This past year only exacerbated that crisis, with ⅔ of adults saying they experienced social isolation.  Yet on the bright side, if there is one to be had, some mental health advocates believe COVID-19 will finally give loneliness and social isolation the mainstream recognition they deserve. 

I’m hoping they’re right, and that when we all go back to “normal”, whatever that was, some of us will be changed by our experience.  Am I being too idealistic or unrealistic to hope that  those who had a particularly difficult 2020 emerge in Summer 2021 more sensitive, more aware of the challenges others face on a regular basis?  That many of us will experience what is called “post-traumatic growth”, where we emerge stronger and with a greater sense of meaning as a result of hardship? Might the vulnerability so many of us experienced in our relative isolation soften our hearts so that we widen our social circles?  Will more people reach out to their elderly neighbors or recently separated friend or the new immigrant family that moved in down the street or just someone who doesn’t seem to get out much?

I sure hope so. Just like the pandemic, social isolation is a public health crisis. Loneliness has been estimated to shorten a person’s life by 15 years, equivalent in impact to being obese or smoking 15 cigarettes a day! Those figures always boggle my mind, that for all the vegetarian food and exercise and meditation and the relatively healthy lifestyle I have, my lifespan is being shortened by circumstances I have less control over.

For me those circumstances include having a son with limited social skills which have diminished even further over the past year of being holed up alone; now going somewhere unfamiliar or meeting people he doesn’t know has become even more of a challenge. Finding reliable respite care is equally hard, which means it’s difficult for T & I to get out on our own. 

I find this topic especially hard to write about. Who wants to admit to feeling lonely? Here too I’m not alone: Research shows that people would rather admit to being depressed than to being lonely; that there’s even more stigma to feeling socially isolated than there is to mental illness.  The British, who have studied this so much they have appointed a Minister of Loneliness, have found that while anyone can feel isolated, it’s more likely to occur in certain groups: carers [what they call caregivers], the elderly, people with disabilities, refugees, the newly widowed or separated, members of the LGBTQA community.   (Of course there are members of all these groups who don’t feel especially lonely.) Women over 50 who are carers were found to have especially high rates of isolation, so at least I’m in good company…

But the fact is none of us want to be here. Everyone wants to feel less alone and more connected. It’s part of the human condition. A period of disconnect can help us appreciate how much we long to feel part of something bigger than ourselves. I’m hoping that more people appreciate our shared humanity and that normal might look a little different this time.

A is for Accommodations

V had his J & J vaccine last week. I am relieved and grateful.

How this came about:

As I had written in an earlier post, V’s scheduled vaccine, like millions of others, was cancelled when the Johnson & Johnson shot was paused due to potential health risks. My wonderful cousin S read my post and asked if he could help, mentioning a good friend K who worked at a nearby hospital and might be able to assist us in getting an appointment when the pause ended. I explained our challenges: V won’t keep on a mask, would have a hard time waiting in a line or remaining in a crowded waiting room, and would likely be very anxious about the shot (the reason we needed to have the single dose rather than the two shot options).  How could we make this work?

While I was away in Portland, T & K connected and came up with a plan: They (T, V, and V’s home therapist B) would drive to the hospital, where a designated side door would be open for them to enter directly into an exam room where a nurse would be situated to give him his shot. 

Everything went as planned and V got his vaccine. 

I am so appreciative of my cousin’s thoughtfulness and his friend’s aid, both going above and beyond to help us out.  Yet I think, what if this sort of accommodation on a need-by-need basis was the norm? What if organizations and institutions like health care centers and hospitals and drugstores all provided necessary accommodations for people with special needs? What if it didn’t take knowing someone to make it happen? What if there was a number to call, or a designated person in charge of making services more accessible to everyone who needs them?

I know much about this issue as a parent of a severely disabled person, who has made endless calls trying to find out if an event or program would be accessible for us and if not, if any special accommodations could be made for things that the general public wouldn’t even have to think about. For example, V’s current doctor, even pre-pandemic, let us wait in the car until an exam room was available and then would call us to come in because V would get so anxious and at times disruptive in a crowded waiting room. (As simple and easy to institute as it is, most doctors’ offices in my experience are not willing to make basic accommodations like this.)

I also know about this topic as someone who graduated from a program on disability policy and then had a job coordinating disability services for a large organization.  I know that it can be complicated and at times expensive to provide everything that everyone needs, yet also that in almost all cases some arrangements can be made to help people out, even if it is not the perfect solution.  

While the ADA (Americans with Disabilities Act, enacted in 1990) is a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life and is supposed to assure that people with disabilities have the same rights and opportunities as everyone else, there are often lapses. 

As with other civil rights protections (on the basis of race, color, sex, national origin, age, and religion) there are lots of hard to enforce forms of discrimination that still occur. For example, inequities in the vaccine rollout have brought attention to the fact that people of color often receive inferior healthcare.  In the disability community, there’s a class action lawsuit over the fact that the NYC subway system is supposed to be accessible to those with mobility issues yet elevators are often closed or out of service. In addition to fighting for what they deserve by law, the case is also drawing attention to a problem that others don’t often think about.

That’s the thing about special needs – you don’t think about them unless or until you have them. And because at some point in our lives most of us will have some form of disability, wouldn’t it behoove us all to try to make every place and activity as accessible as possible?  

Because the fact is that most of us don’t have the time and energy to pursue legal action every time we don’t get services that are mandated by law. We lodge complaints, seek out other resources, troubleshoot and problem solve as best we can to get what we need. But we don’t want to wage wars and fight for our rights over and over again. We often rely on or hope for the kindness of strangers and suffer the consequences when that basic consideration is absent.

“What do you need and how can I help you?” Those are questions I used to ask in my job, questions that I wish I heard more often. When my cousin reached out to me it felt so heartening because that is basically what he asked. We want others to understand that when people are denied their basic rights we all suffer, because we all deserve to have access to the same resources.  Everyone deserves to ride the subway and go to the doctor and be treated with respect. Everyone who wants one should be able to get a shot with whatever accommodations are needed. For now I continue to advocate when I have to, and appreciate when people are willing to lend a hand.

A New Chapter

Earlier this week I was feeling lethargic due to a disruption of my circadian rhythm. I couldn’t have been more appreciative to feel so lousy, to have that unfamiliar sensation called jet lag after going so long without traveling, having spent 3 ½ days out in Portland, Oregon helping B get settled in his new place.  I will spare you, and him, the photos of every step of the way: here he is on his new sofa! Here he is sitting on his new bed! Here he is at his table! What a bonus that the kitchen is big enough to hold a table and chairs! How unusual for a studio apartment! 


Lots of exclamation points, which is how I felt much of the time. Excited! Elated! Yet bearing witness to this new chapter of his life, I also had a sense of wistfulness, of long ago memories of starting out somewhere new. There were times where I felt this swelling of emotion inside of me, aware that these moments were rare and precious in a way I can’t convey in words or pictures. Whether B lives there for one year or ten, it still will be the first city where he had his own apartment. How lucky that I was there to soak it all in.

But not alone. There were a few other protagonists, helpers who populate this chapter because yes, it takes a village to move to a new city. There’s BFF S and Cousin S who helped set the stage for this move, there’s brother- and sister-in-law T & C who came down from Seattle with their fun dog Bogie and were a huge help in getting set up, going to Target and Goodwill and the Furniture Liquidator, bringing the table and chairs and essential to Portland, a bike that had belonged to T. Most important, they reminded him he had close family just a few hours away. I’m flooded with gratitude for all these people did to help him land where he has, to help start the process of settling in.

What does it mean to get settled in? It’s short term, like here: putting together the bed frame (a pang of pride: has he inherited his father’s handiness rather than my lack thereof?) Getting furniture and housewares and the essentials that even the smallest apartment needs. But there’s also settling into a new location, making the unfamiliar home.

Here is my delicious breakfast – I don’t often photograph my food but the hashbrown stuffed with veggies and cheese topped with eggs was so good, and the landmark Fuller’s Coffee Shop felt like it could become a mainstay. The friendly waitress greeted the other customers by name, asking if they wanted the usual; it seemed like a place where one could easily become a regular. Opened in 1946, It felt right out of that Edward Hopper Nighthawks painting from 1942…except that there were plexiglass shields at the counter and everyone not eating had masks on, but still, there was something that felt timeless about it.


Will it be his Joe Jr’s? That was the coffee shop two blocks from my studio in New York, the place that I still have the soup menu memorized (starting with Monday: pea, navy, lentil, beef barley, clam chowder, pea again on Saturday and ending with vegetable on Sunday), where I could go and feel less lonely, or at least that the loneliness was shared with so many others sitting at the counter with their coffee or soup, because loneliness goes with city life but isolation doesn’t have to. It doesn’t take connections or fancy degrees or great social skills to be a regular. Just showing up can be enough.

And I was delighted to show up for B, if only for a few days. The short visit was just a taste, a toe dip in the big Willamette River, a scent that was somehow different from the East Coast, we both felt. I’m already eager for my next trip whenever that will be, to see B more settled in, with work and new people and a neighborhood that is familiar. He will know the excellent bus system, if he chooses to use it; he will know which streets are best for biking; he will know about bridges and food trucks and where to get the best coffee. He will have his local stores to shop in and parks to walk through. The newness will subside as things become routine. Hopefully he will keep that sense of wonder that arises in a new environment. “I keep discovering new pockets”, he texts, and I remember that feeling so fully: the way a city is a dear friend you want to get to know as well as you can. The way you feel like you have all the time in the world but also a sense of urgency because it feels so comforting when things are familiar, when you can walk out your door and know where to play basketball or get a sandwich, when you no longer have to look at maps to know how to travel from point a to b, you simply travel the distance.


And in the end, I travel a long distance home: from PDX to EWR, the two airports that will be our hubs, nearly 3,000 miles. It’s far but it will make for different ways of being together, less frequent yet more intimate, hours and days of close proximity followed by weeks and months apart. It’s how many people live. You immerse yourself in other places and other lives and then pick yourself up and leave, knowing you’ll be back again. To witness the chapter unfolding, one page and day at a time.