giving and getting

I listen to public radio a lot; it’s an engaging companion when I’m doing household tasks that need to get done. WNYC, my local station, just finished their annual pledge drive. I donate a modest sum for all that good listening. Yet I find the constant asking for money interrupting my favorite programs so annoying, even as I realize it’s essential to get needed funds to keep operating.

I often feel like that pledge drive: constantly asking for assistance to keep on going. Seeking help for V, asking for support for the programs he uses, being a taker far more than a giver. 

I thought of this during T’s time away visiting B, in which my sister and brother-in-law came down to help for the weekend, a kind and generous act. It was so wonderful to have them here to help alleviate the isolation and exhaustion of caregiving.  Yet I get frustrated that I am so often in the position of needing, of taking people up on their offers to help, with no opportunity to reciprocate.

We ask for support for organizations that help V. I do research and make calls seeking respite and home therapy.  As CEO of V Enterprises, it is a one sided equation of relying on the kindness of strangers, friends and family, of always being in need. I don’t like being in this position.

If our home life was different, if I didn’t have so many responsibilities that take up time and money and energy, I would do more to help others. I would have made a great rich person. I’d be a gracious host, I’d donate much of my money – the point of having excess, if I ever were in that position, would be to share as magnanimously as possible.

 I love helping others, it’s something I used to do when I was a funder and consultant working for those with big coffers. I spent years helping to allocate funds from private foundations and public agencies, and yes it’s fun to have access to lots of money that goes to worthy causes. Having also been a seeker of funding for various nonprofits I can say without a doubt it’s far more enjoyable to give than to ask for support.

Now I give donations to organizations I care about but I don’t give in any big way.  I don’t have economic or social capital, connections, I’m not aligned or adjacent with those in power, a much better place than feeling powerless and vulnerable. 

I’m on the board of a new organization affiliated with V’s school that is developing services for young adults 21 and over (he’ll be there in February), in charge of fundraising but I don’t want to be in that role; I’m so tired of seeking support.  

Of course I realize circumstances change: people get sick or hurt, have responsibilities thrust on them, are weakened or diminished in what they can do for themselves let alone others. And situations can change for the better too. The fact is I’ll never be rich and likely never will get to work again with those who are. But I like to think someday V will finally get the services he needs and I’ll at least be in a better position to give rather than get, to be the generous one rather than the recipient of others’ largesse. 

For now I’m simply flooded with gratitude for whatever support we can get. Rich not in money but in feelings of appreciation for whatever kindness comes my way. For now that has to be enough.

Flying Solo

Flying solo x 2: Yesterday T left for Portland to visit B, the first time he has seen him since he moved in April; also the first time he’s been on a plane since he flew to Seattle nearly 3 years ago.  I’m so happy for him, that he and B will have the next four days together reconnecting in person, exploring that wonderful city, and just hanging out. 

It feels like ages since I went away although it’s only been a few weeks.  A lot has transpired in such a short time, in some ways, in other ways it’s been typically uneventful. For now there’s been a lot for me to rehearse or learn to do while T is away, so many things usually in his wheelhouse, from carrying Ruby up and down stairs to preparing much of V’s food. (He’s a meat and potatoes guy and I’m a veggie and tofu gal so I leave it to the fellow carnivore to do most of his cooking.)

So I get lessons in how to hold Ruby, how to slice and fry the potatoes the way V likes them for breakfast, and how to make the spicy sausage or steak or burgers that he often eats for dinner. V has a huge appetite yet he’s also grown more finicky so things he’ll eat one week he’ll have no interest in the next. It’s frustrating and labor intensive to do all the kitchen prep needed. Then there’s the endless laundry – we joke that I’m intentionally bad at folding but I really do lack that spatial relations/tidy gene, so I load and unload and put away and leave the large folding table to T most of the time.  The fact is T is better at much of the day-to-day stuff needed for V, plus he’s bigger and stronger than him, which makes for a very different dynamic.  V can see right through me when I tell him to get up and get dressed for school, for example, whereas when T insists on the same things he responds.  

This morning he barely made it to school as he was insistent on staying in his nice comfy bed with his favorite blanket. Normally T could get him going but on my own he refused to get up despite my following the exact same routine T does. Finally by some miracle and shouting that the bus was here he finally arose and got dressed – he loves school so it’s just his way of being defiant with me. 

It’s made me anxious about T’s time gone in a way that is hard to admit. It helps to understand that V’s co-diagnosis, in addition to autism, is pathological demand avoidance – which as it sounds means he just won’t do much of what is asked of him. Especially from me. This makes for a lot of fear and dread and tension. He’s not intentionally aggressive yet he can have outbursts when he doesn’t get what he wants or is told to do something outside of his interest. I use the word resistant a lot but that might be a little too tame for a fiercely stubborn 20 year old.

This is why my sister and brother-in-law have generously offered to come down for the weekend to help me out, or at least offer moral support if V is in his stubborn mode and none of us are any help. I’m very appreciative of the company. Even with T here and involved, our lives are very lonely. On the one hand I long for companionship, on the other I’m hesitant to have anyone witness what our lives are like, the day to day challenges that most of you couldn’t even fathom. We have a good sense of humor most of the time – it’s an essential survival quality – yet we also have become acclimated to a lot of hardship.

The moments of grace still exist in mounds of dirt – somehow I had expected the balance to shift as V got older but new and different difficulties have taken hold from the ones that gripped us when I first started this journey. Yet perhaps I do have more grace, just as a matter of course, growing wiser and more accepting and especially more grateful for the littlest gifts as the years go by. The dirt and mess and chaos is no greater than it was, just different. So maybe the balance has shifted a bit.

Or at least time and experience can’t help but shift how we see things, as long as we choose not to shut down. Case in point: I just rewatched Enlightened, which as I’ve mentioned before is perhaps my favorite TV show ever.  Just like show creator Mike White’s recent and more broadly popular White Lotus, there’s a big heart amidst the seething satire. And Enlightened has such a lyrical, pensive and poetic quality to it. The protagonist, Amy Jellicoe, is insufferable and cringe-worthy in many ways; she’s also endearingly idealistic and good-intentioned.  And in the end, hope and the little guy break through the darkness and into the light of day and there’s the sense that change is possible. It’s the best sort of art: healing as well as entertaining, illuminating and funny and harsh and kind all at once. It seems odd to rewatch, reread or re-listen to anything when there’s so much new “content” all the time, but it’s nice to revisit creative endeavors, like going back again and again to a beloved book or city, discovering new elements and angles each time. To see how we’ve changed in how we react to the familiar, how we notice different elements with maturity and wisdom and the passing of time. 

And so I have no doubt T will have a great time in Portland, that he will enjoy his time alone – all too rare – and with B. I hope that here on this coast we fare well, yet even if we don’t we will get through it, flying solo for a few days.   


To Do/Overdone

Settling back in from a glorious vacation the to do list for V comes barreling towards me. These are tasks that fully consume my time and energy. It is why my answer to being asked if I work is, “Yes, I just don’t get paid.” It’s a bit too harsh though I realize, and serves as a conversation stopper, which is not my intention at all. So consider this a conversation starter for us and all the other caregivers out there because there are millions of us, all with to-do lists that can make us feel overdone and overwhelmed.

Our home therapists both just quit the agency we’ve recently started working with so even though our insurance will cover twenty five hours of services we currently have nada. The director of the agency says she’s trying to find the right person, which of course is what we want, but it may take a while. It’s been weeks and it’s clear it’s not a high priority for her as it is for us. I asked our case manager at school to reach out to staff but got no takers, even though home therapy pays much better than being an aide. Even with good wages it’s hard to find people who want to work with a young man with severe autism. We can’t even find anyone we can pay out of pocket. So we currently have no help, which makes for long evenings and even longer weekends.

We call our insurance company case manager and she suggests we find another agency and gives us the contact information for nine other agencies we might contract with, and I start making calls and doing research to try to find some place that can actually provide services. To do lists often splinter and grow like this.

Headache number two. We’re also dealing with the disappointing aftermath of a new bill passed in our state allowing a bridge year – an extra year of school for those deprived of significant learning due to the pandemic. V definitely qualifies: he had over a year with no internships or job training or help with independent living skills or the speech and occupational therapy still in his IEP [learning plan], and virtual learning was a total bust for him. But like many other districts, ours is doing everything they can to discourage us from having the extra year (while covered by state funds, they have to pay for transportation and administration). We have upcoming meetings to prepare for and a potential fight ahead to get him what he deserves and is due.

Also on the topic of fighting to get V what he needs and should be receiving, I will have to redo the long survey that determines how much funding he will receive once he is 21 because he wasn’t given the rating that aligns with his needs – it’s roughly half the funding he should be getting. Although I attended several workshops in preparation for this evaluation – there are 18 pages of questions that come at you rapid fire on a phone call – I still didn’t go far enough apparently so we will have to request a redo and hope for the best.

Even with the excellent (and expensive!) special needs lawyer we have for all this there’s no guarantee that V will get everything he needs. The relaxation of the previous week – where the biggest decisions were where and what to eat – has evaporated as I deal with much higher stakes matters as well as V’s daily needs, which are substantial.

Not a very fun or uplifting post but that’s where things are right now. Watching sitcoms at night to try to get some comic relief. Trying to remember to breathe. Reminding myself that I am not alone although having so much on my plate feels isolating and lonely. Working on feeling happy for others’ joy, and empathy for those who share my stress level, those doing jobs that need to get done whether we want to or not. 

PDX-ewr: returning

Back from a wonderful trip to Portland. B is great and so is his chosen city. Beautiful architecture, gardens and parks, delicious food, friendly people – even in cars they’re cordial out there! – stunning roses, the only thorn being the huge homelessness problem. Portland has the highest homeless population per capita of any US city, with an estimated 40% mentally ill, and a significant percentage having substance abuse issues. It’s an unavoidable, highly visible and smelly problem, hard to get at the root of why and how it became so bad. Parts of downtown boarded up, again hard to say how much is from the pandemic – NYC also has a lot of empty storefronts these days – and how much is because of rioting and homelessness.

Still, as disheartening as that was, I admit it did not stop me from enjoying myself completely, the freedom of being away from home, the opportunity to walk over 20,000 steps, or about 10 miles a day without even trying, just being out and about, going from the hotel to B’s apartment, checking out different neighborhoods and food carts and the riverfront. We rented a car for a day and went to Cannon Beach, which was also gorgeous, in sun, showers, a squall, more sun…the weather is great if you like change.

How to summarize a vacation? I’m at a loss for words, and at a certain point I got tired of taking photos, although I did get plenty from the rose and Japanese gardens and some nice beach shots. Not captured: all the downtime, the intimacy of being together, B & S and I having little adventures, the way time is so different when you are away, whole days to fill without any pressure or schedules to follow. So good to travel with S again after so much time, we get back into the rhythm of our old days, a bit slower, some more time to rest but still curious and open and engaged with wherever we are and whoever we meet. We’ve aged well I think.

So proud and happy for B, who has a cute little apartment in a wonderful neighborhood and a good first job with really nice people and a great atmosphere. The only downside to being in Portland is the distance, although with direct flights it doesn’t take too long; still it’s not somewhere to go more than a few times a year. It is an area to aspire to move as I’m not in any way married to the East Coast, except for my family here that I wouldn’t see as often.

Back home T and V did fine without me, and I’m so grateful at how gracious T was about my going away. A little jet lag the first few days but other than that I get right back into the daily patterns where everything is so regimented: when V gets up, trash days, Ruby’s walks, following up on calls and emails related to V and his future. Things are flat and repetitive, surprises are rarely a good thing; predictable is much better generally speaking.

I go back and look at photos, which will have to do for now because words are failing me (among the small mishaps while I was away: a lost pair of earbuds on the flight in and my computer stopped working so I’m writing on my phone). Grateful for the holiday and doing my best to settle back into life sans B, a happy yet slightly bittersweet homecoming.

away at last

EWR-PDX Friday September 24th 11 am has been imprinted on my brain for the past month like a beacon of hope, that thing to look forward to that has kept me going. That is when I am scheduled to depart from Newark for Portland to visit B for four days. I’ve been so excited to visit him. I miss him more than I let myself realize because it’s easier to feel it as an absence than an ache.  And I am so happy for him, so thrilled that he is spreading his wings clear across the country. I’m proud of what a fine young man he is and…and if I keep going I will get all sappy and I’d rather not. It has been five months since I’ve seen him, the longest we have ever gone without in-person contact.  I’m hoping to see him more frequently if I can manage it. And managing it is an effort.  

T is terrific, he is up to speed with being primary caregiver for V and Ruby, it’s just that I know it’s a lot for one person. Just this morning, before I get to the computer, I wake up at 5:30 with a knot in my stomach that our scheduled weekend help has fallen through and he’s completely on his own.  I drink a half cup of yesterday’s coffee I put in the fridge just in case I had this sort of early morning, meditate and pray, do the mini crossword and check the headlines to make sure there isn’t a new war/flood/other climate catastrophe. 

By then it’s time for the real day to start, the one with duties.  Make a pot of coffee, make lunch, unlocking and locking along the way: tortilla chips, salami, yogurt, mango chunks.  Kids half his age make their own lunch but V has no control around food. It is why everything is locked. It is why after I get him ready – which includes luring him into the bath and then having T shave him and rinse his hair and having him come down for breakfast without putting on any other clothes he finds: earlier in the week he ran down to the basement where he spotted a sweatshirt on an 80 degree day; yesterday he located the shirt he had worn the day before and put it on over his clean shirt — it’s hard to be so alert so early in the morning to catch things before he does until  the van comes – much too small for four teens/young adults, a matron and driver, and V sometimes has  a problem going to his assigned seat instead of where he’d prefer to sit. So I am beyond relieved by the time he is successfully out the door and on his way.  But before I can catch my breath it’s Rubytime, time for the slow slow walk for her to sniff the morning news and for me to watch all the neighbors gathered at various bus stops up and down the street, the parents chatting, the kids playing on the curb, the normalcy of it still after all these years causing a little heartache, because I expected my two boys, so close in age, would be like the other siblings I see together. 

That that would be the farthest thing from the truth is something I never could have fathomed even after V’s diagnosis because people with little kids never want to think that far ahead, to even consider that we would need to make such detailed and thorough arrangements for a 20 year old in order to go and see his older brother (T and I are each making separate trips over the course of the next month) because we can’t travel with V at this point. Although I just read an article about a woman who started biking with her severely autistic 24 year old and had a vest made that said “Autistic – Be kind” and she said that it drastically changed how people responded to them, from impatience and frustration to yes, kindness. I wonder if such gear would have helped with all the awful experiences traveling with V over the years on our regular trips to see T’s family in Seattle, the way we were treated by insensitive airline staff and glared at by other passengers. Now with so many more unruly confrontations on airplanes I can’t imagine taking V on a flight.  There’s so much I can’t imagine anymore. 

And so the relatively carefree parents and kids on the curb, as adorable as they are, as wonderfully interracial as our neighborhood is, it’s still like staring at a portrait of a future you’ve been denied. I try to let it go, to shift back to gratitude and mindfulness, like Ruby, who knows nothing but to sniff at whatever presents itself. She has accepted her decline without even seeing it that way because that is the gift of being an animal, you just can’t overthink things. 

She goes limp as T carries her inside and I mash her medicine into wet food to help her achy joints and then finally, my kids are taken care of, I start the unlocking one last time for my own breakfast: almond butter hidden behind the canned goods, raspberry spread locked in the fridge, gluten free bread locked in a cabinet, only the coffee, which V has no interest in, is out in the open.  It takes as much time to gather and then re-hide the ingredients as it does to make breakfast.

By the time I sit down at the computer I feel like I’ve already had a full day. I wonder why the words don’t just flow as soon as I am situated and yet I acknowledge my effort.  So much effort. And how it will be a good thing to be away from it for a few days and to have time with B and S. Yes, that is a special bonus that my BFF who is also B’s godmother/friend is coming out too. 

S was my traveling companion for many years – from Argentina and Brazil to Hungary,Turkey and Mexico –  and it is so exciting to be going away with her again and to visit B, who we both love dearly.  So much abundance it’s hard to contain myself.

I go through the same obsessive patterns I always have with travel: I call twice to confirm the hotel reservation, check the airline itinerary repeatedly to make sure I didn’t get the day or time wrong, make sure my ID and other essentials are in my wallet, and that I have the wallet in hand and concentrate on what else I can control because the fact is most of life we can’t control.  We deceive ourselves by focusing on what we can master and blocking out all the uncertainty of life. To embrace uncertainty, now that takes a lot of effort, at least for me.  Meditation and prayer are what keep me from getting lost in loops of “What if…” because whatever arises I will handle it as best I can. That’s all we can do.

And so it is Friday morning and I’m fully packed and ready to go: confirmations and itinerary on my phone and printed out for reassurance, I think I remembered everything I need but anything I forgot can be found and purchased in a city of 600,000. A city where there is one awesome person I can’t wait to see.

the details

We often communicate with abbreviations or brevity as placeholders when we don’t want to get into the details. How are things going? “Hanging in there” is my favorite response. It keeps things vague, not too negative. But in leaving out the details there is so much I don’t share, and with that, so much that isn’t seen or understood. I appreciate when others are blunt and honest, so why shouldn’t I be too?

An example. Monday I had my bi-weekly Zoom support group. It’s scheduled for 7 PM. At 6:45, we’re all hanging out in the living room listening to music: one of V’s Spotify playlists on my phone is blasting through the speaker. He’s calm and content listening to Vampire Weekend, the Killers, an assortment of familiar bands and songs. I plan to use my computer for the meeting, but there’s a new login link I was texted and for some reason (I’m usually passably adequate but I’m not the most high-tech person) I can’t get it to work. I don’t want to miss the meeting so I tell V I’m going to take the phone for a little while. I login on my phone with no problem, appearing briefly on the screen with the other women in the group, when V has a complete meltdown.

Sorry I couldn’t participate in this week’s session, I explain, V was having a rough time – that’s another shorthand I use a lot – but what exactly does that mean? What I appreciate about the support group is that even though our kids have completely different diagnoses we all can relate to the challenges of parenting a child with severe behavioral or emotional issues. I can, if I choose to, share the details, although sometimes I feel too burnt out to explain and leave it at that, a rough time.

What it really means: V stomps his feet, he cries out, he tries to grab the phone back, I have to lock myself in our room, he starts banging on the door and gnawing on his hand, close to biting but not quite. He doesn’t have the words or maturity to say “I want my music back!” We can’t have a reasonable conversation about it, where I tell him it will be back in 45 minutes and find him something else to do. We choose our battles and in this case it seems more important to skip the meeting, much as I’ll miss it, than to have to have an entire evening with V being out of control and likely having trouble going to sleep later. So I disconnect Zoom, put Spotify back on and watch as V goes back to his favorite chair with the speaker on the table next to him and listens to music until, with the help of his evening meds, he is tired enough for sleep. Crisis averted.

Having a difficult day or a rough week or a hard time can mean a lot of things. And while most of the time he’s well regulated enough to function fairly well there’s that 20% or so when he’s not, when something sets him off and plans get cancelled or changed. This summer when he went to camp in August there was one day each week when he was completely out of sorts and unable to attend or participate fully: the first week it was that he refused to get out of bed one morning, the next week one day he went racing out of the doors once he arrived and wouldn’t go back in, the next week there was a day when he spent the entire time hanging out in a hallway, refusing to take part in activities. We had no explanation for any of these off days, how they would occur in the middle of an otherwise good week. I was grateful that he had such a great time the other 4/5th’s of the days, but making plans was challenging.

The extreme weather we’ve had this summer is a good metaphor for the type of caregiving I do. Moods move in like clouds before a storm and what was a bright cheery day erupts into something it’s hard to handle. “We’ll be there shortly” becomes “We can’t make it.” It’s why support groups or just having a few people you can be real with is so important. It’s why I want to explain some of the details a little more. To gain some understanding and acceptance (and hopefully not garner any pity, which is the last thing anyone ever wants when they share their truth.) When I listen without judgement to the other women in my support group, I really grasp their unique struggles; I see how, like myself, they feel frustrated and exhausted when the storms occur and yet find a way to celebrate the smallest achievements. When we had all that rain and lost power during Ida I was as flooded with appreciation as our basement was with water, relieved that V, while upset when the lights went out, did not have a complete meltdown, that he somehow adjusted and got to sleep alright.

And so I work on cultivating equanimity – to have some evenness of mind even under stress. That means not to get too upset when V is dysregulated, whatever that means at the moment, not to get too complacent when things are going smoothly, yet not to be on edge all the time waiting for when he will fall apart, when the weather patterns will change. I sit here now and the only sound I hear is Ruby snoring. I know this calm won’t last but I enjoy it while it does and I trust I have the resilience to get through the next storm, whenever it arrives.

Prayers all Around

Happy new year! Whether you are Jewish or not, it is the start of a new season.
I’ve been thinking a lot and writing a little, having relished the break from this blog, which was hard to maintain when V had no school, camp, or any structured activities.

In addition to swimming, which is my summer salvation; and walking, which is the activity V and I have shared for 18 years; the activity I’ve been most engaged in this month is prayer. Prayers all around because there is so much to pray for even if like me you are an agnostic, and/or in that larger group that believes in something – a higher power or life force – but not necessarily G-d. Prayer to me is akin to the spiritual aspect of the writing process: gaining clarity on what matters most. Afghanistan. Haiti. Louisiana and now here in NJ where more people were killed during Ida than any other state. Praying for freedom and safety and health and homes that can be rescued.

Closer to home we all have our own heartaches. My Aunt Minna died, my beautiful, whip smart, world-traveling, gracious aunt. I prayed for her easy transition, for minimal pain, I prayed with her passing for her beloved children, grandchildren, great grandchildren. I prayed for her remaining siblings, my father and my Aunt Betty who just one year ago were listed in the Guinness Book of World Records as the oldest living triplets. How precious and ephemeral such a title is; we are all so vulnerable and with one’s loss, the living bond that they have had since birth ends. I pray for the grief they experience and also pray that others can be so lucky to have such long vibrant lives with such adoring families.

On the homefront I pray for the smallest of things like getting through the day, especially since all the wonderful programs, like Friendship Circle camp, that helped make V’s summer enjoyable – and gave T and I space to have our own small joys: mine in a pool, his on a bike – ended late August and we had to do our best to fill the days until September 9th, when school began again. Many days we walked around Verona Lake in a nearby beautiful park, pictured here.

V had his half birthday in August, which I realize to a typical 20 year old is not especially noteworthy but for V and other young adults with an IEP [individualized educational plan] turning 21 is a major event, commonly called Falling off the Cliff because of a loss of all the services they’ve had their entire lives. I pray for his getting the services he needs and deserves, to have his extensive challenges – and our ages, as older parents – help move him up the 10-12 year (Yes, you read that correctly!) waiting list to get funding for residential services.

As the African proverb goes, “When you pray, move your feet.” Work towards the change you want to see in the world. Don’t just pray for people but try to help them out (not the same as offering unsolicited advice), be a good listener, offer empathy. In this case however the movement also involves paying a lawyer to help make these things happen because we are about to enter a cutthroat period where our desire and demand for the best possible services butts head with the bureaucracy of public funding sources with the unspeakable goal of giving us the minimal level of supports that they can.

So for the next 6 months I will be delving in, and writing about, this next stage of life. I know it sounds dire but like all journeys, there will be much to learn and gain along the way.  My prayer is for V to have a good future, to live a fulfilling life, and for the rest of us to have more opportunities for the same.  The steps are myriad and so much is still unknown but I’m hoping that with an advocate and the copious research I’ve undertaken it will be possible to get there.

And so I pray. I pray for the families I know in similar situations, I pray for individuals in pain, I pray for those who grieve great loss and those who find these times difficult and isolating. Scientific research on prayer shows that it may have similar benefits to meditation: it can calm your nervous system, shut down the fight or flight response, increase a feeling of emotional support. You can be an agnostic or atheist or any religion and take part.

This September I pray that the year ahead has more joy than sorrow, that you feel less alone, that you have the support and love of others to help you through the hard moments and to share the good times. I pray for peace and joy and strength for the new year, whatever it may bring.

quitting is the new winning

I’m struck by two big news stories this week and how they reflect and refract each other, one in DC and the other in Tokyo. 

“Quitting is the new winning” is a comment I read in response to the recent spate of iconic women athletes dropping out of competitions to tend to their mental health: most recently and prominently, Simone Biles, considered the best gymnast ever, and Naomi Osaka, the top-seeded tennis player and highest paid female athlete. The comment was intended as a slur but to many of us inspired by these recent actions, it’s a triumph of its own, requiring honesty, courage, humility and self awareness. It takes all of those attributes to acknowledge when mental health concerns: anxiety or depression or a feeling of being overwhelmed or disregulated – need to be addressed, whether you’re in the public eye or not, and when even the most competitive of athletes needs to step back. Biles was inspired by Osaka, and hopefully millions of young girls as well as people of all ages and backgrounds will be inspired as well to put their own mental health front and center, to have the awareness and fortitude to take care of themselves.

At the other end of the spectrum, lacking all of those admirable attributes is the former guy, our last President, who incited the January 6 insurrection, at its core the outgrowth of refusing to quit and accept the fact that someone else was the winner. His lack of even a modicum of grace and decency to step aside was the complete inversion of the women athletes, showing dishonesty, cowardice, hubris and an utter lack of self-awareness. Listening to the hearings is bone-chilling.

Watching Olympiads on the other hand is spine tingling.  As commercial as it is I’ve always been a sucker for the Olympics, although not in the rah rah Go USA patriotic way, but in how it is ostensibly a global event, and even though certain countries that pour the most money and resources into their teams tend to win the most medals, there are upsets and underdogs that make for some moving stories.  Hidilyn Diaz, the 121 pound Filipino woman who lifted 500 pounds to win the gold in weightlifting, a first for her country; Triathlete Flora Duffy’s first place finish, making Bermuda the smallest country to win the gold. 

And while Simone Biles, on the surface, is the mirror opposite of an underdog – she is one of the faces of the Olympics, the athlete most expected to bring home first place wins – she’s been just as inspiring. How hard it must have been to admit to how she felt, to turn on its head the saying “take one for the team” exemplified by Kerri Strug, the Olympian best remembered as the gymnast who vaulted onto an injured ankle, seen at the time as an act of bravery and patriotism and in retrospect as masochistic foolhardiness: 18 year old Strug never competed again. Biles, taking care of herself, will most likely regain her brilliance. She will compete again and win.   

And so might the other guy, the former President. The one who did a number on the mental health of millions of Americans, regular, uniconic folks like myself and most of the people I know, who felt bereft and despondent that such a monomaniac could inspire so many people in victory and defeat.  That the Big Lie could embolden so many deluded followers to violent action, and even more who defend them or deny the wrongdoing.

I’m hoping that even more are captivated by the grace and grit  of the women athletes.  Go team go. Let’s all take care of ourselves. 

People Come First

BFF S came to visit this past weekend and we had a wonderful few days filled with great conversation, food, walking and art. We spent a day in the city visiting museums, something I realize I haven’t done in a couple of years, what with the big swath of time taken up by Covid. The city streets had more people than during the height of the pandemic yet fewer than it typically would on a beautiful summer day, when weekday workers would merge with tourists. (There are fewer of both right now.) The museums were crowded, which was reaffirming, that great exhibits will lure people inside – all masked yet crowded together.

At the Metropolitan Museum of Art, we took in the spectacular Alice Neel show, called People Come First, and the gorgeous Medici exhibit (which could have been called rich people and popes come first : ) The juxtaposition of the two, literally side by side in the same floor of the museum, was stark.  Both focused on portraiture but with different eras and vastly divergent approaches to their subjects.  Both were riveting so it was a double feast for the eyes and soul.

Alice Neel, born and educated in Philadelphia, then living most of her adult life in various neighborhoods in New York, including what was then bohemian Greenwich Village, and Spanish Harlem, painted a wide range of subjects: art critics and curators; Communist organizers; naked women, many of them pregnant; Andy Warhol and other well known artists and writers alongside her neighbors in Harlem.  She was inclusive in the best sense, a kindred spirit to S and me.

Neel’s eclectic egalitarian mix and lifestyle was in stark contrast to the Medici show, which covered the period from 1512 to 1570, when Florence was transformed from a republic with elected officials into a domain ruled by the Medici family.  Elite, precious, yet utterly exquisite. 

I usually don’t take many photos of art but nothing feels normal these days, and I felt a need to capture some of the beauty I drank up in those few hours of museum going.  [I realize these are all of men when Neel  painted so many women; perhaps it’s something about the female gaze on the male form that I was especially taken with. The Medici show, as depicted in the last two images below, was of course comprised of all male painters and subjects.] 

Today I walked to the public library to return a museum pass to the Museum of Modern Art, which we also visited. It too was crowded and by the time we got there, walking alongside Central Park and then through midtown Manhattan, I was bone tired. I don’t have the energy I used to have, decades ago I used to walk home (on 14th Street) from the Met (on 81st Street) like it was nothing. Still, at a slower pace and with more frequent stops to rest, somehow we walked over 16,000 steps – around 8 miles – in the course of the day! (We both have watches with step counters.) It was great to be out of the house, out of my usual dull routine, out with a dear friend.

I thank the librarian profusely for the wonderful service, promising myself I’ll be back soon for another museum pass, then walk to the pool for a swim before I have to get home for V and another typical day.

Midsummer’s Bounty

The other day I was in my solitary lap lane in the pool when a woman yelled out “Look! A deer!” And everyone in the water – it was late morning, so less than a dozen of us were wet so early in the day – stopped and watched a big deer go bounding by in the park just beyond the fenced in pool area.  It was a shared moment of delight, making me aware of how much I’ve missed that element of communal experience during the pandemic. The pool allows me the shared experience with others but I rarely really connect with my fellow swimmers like I did in that moment when we all looked up and watched together as this beautiful graceful animal briefly interrupted what we were doing and we were bound together. 

It was a little pocket of pure joy and connection.  

All in all, while this summer has been uneventful and a little dull, there are a lot of pockets of uplift and beauty that have made it more than bearable, and the more I focus on them and the sense of abundance that comes in midsummer, the better I feel.  There are a lot of articles about staycations and micro-adventures and awe walks – all made up terms to make people who don’t have a real vacation feel better – and while I don’t use those words I share the sentiment, that there’s much wonder in daily life even if you don’t leave your neighborhood very often. I’m feeling a bit flat and uninspired in the words department lately, (the flip side of midsummer fecundity is ennui) so here are some images from my visual journal that capture how July is shaping up.  

Flowers! We pass beautifully landscaped yards on our daily walks and while ours will never measure up, we do have a bright spread this time of year. The hydrangeas that haven’t bloomed the past few years are miraculously out in full force right now.

Vegetables! Herbs!
No red tomatoes yet but I can pick fresh herbs to sprinkle on my eggs, and get all sorts of seasonal veggies at the Farmers Market.


A neighbor set up one of those little free libraries and when I passed by the other day there was a copy of the novel The Underground Railroad. It’s a riveting read, and when I’m finished I’ll watch the film version on Amazon Prime.

Movies and TV!

In the meantime, I watched, and will likely watch again to appreciate the fine editing of performances and crowd footage, Summer of Soul, a documentary about the Black Woodstock in 1969, which took place in what is now called Marcus Garvey Park. It’s one of the parks I used to go to regularly for concerts and jazz festivals and it reminds me that before there were staycations there were summers of fabulous music for those who chose to stay put.

I’m also happy to have a weekly fix of the new Mike White series The White Lotus. He’s the creator of one of my favorite TV shows ever, Enlightenment. A real gem. Glad he has a new show to watch. (both available on HBO)


I’m not likely to get to many concerts except for the jazz festival up the street later this summer so I’m content listening to V’s Endless Playlist, an eclectic mix of tunes inspired by the broad range of music he listens to, from Aretha Franklin and the Temptations to Vampire Weekend, the Killers,  Chance the Rapper, and Regina Spector…dozens of music makers he sings along with from many eras and genres. 

Hammock time!

When V is at his summer program (he’s still not going in the yard : ( I try to get at least a short rest where I lie on the hammock and look up at the trees, feeling fortunate for these little moments I find in the day to feel a sense of awe and delight.

What are your pockets of joy this summer?