restorative: a week of double happiness

restorative: having the ability to restore health, strength, or a feeling of well-being

The end of our annual session at Elks Camp and the double happiness of V having a fun-filled week in a lovely and loving setting and I having enough time to truly unwind.

I know that's what Shabbos is about - you are supposed to unplug and not work and rest your mind and body (If I followed it I wouldn't be completing this on Saturday morning) but even when I do observe Shabbat, it's not like I get a real break from my life.  I do not have 9 kids to help spend the day with V and prepare enough food from one sundown to the next. I can let go of electronics but I'm still plugged in to life in a way that is hardly relaxing.

Having nearly a week really is an entirely other beast. A description of what I've done in the past 6 days could just as easily be a gratitude list:

Thank you Elks Camp Moore and your amazing counselors and staff for giving V and hundreds of other young people with all sorts of disabilities  and complex medical needs a wonderful week of camp, and their exhausted caregivers a break to recharge. And thanks to the hard-working, big-hearted Elks who raise enough funds to make this experience absolutely free to the families lucky enough to take advantage of it!  It really does take that long to unwind and feel secure again, which is what it means to be moored.

Thanks S for inviting me up to Maine and encouraging me to stay an extra day. I've had many a long weekend at her house, always wonderful, but this slightly longer visit allowed more space for downtime: reading on the porch, sneaking in some World Cup viewing when no one was around, conversations that could be picked up and continued with each long walk or cup of tea, being captivated by the inter-species friendship between the 2 old cats and recent addition of a  bunny baby (young rabbits are in fact called kittens so I guess it's not a stretch that they would find a way to live harmoniously).

Their friendship seems especially uplifting, a sort of sign that we can co-exist with those unlike us - I know I'm reaching here but these are desperate times - and they became a backdrop to the godawful news about the vacancy on the Supreme Court as the last of a never ending stream of mean-spirited divisiveness.  Along with all the positive benefits of  a week without duties, it's the first time in a while I've let the enormity of so many scary events in the world sink in and feel heavy and bleak. 

We visit dear old friend F, old as in longstanding and also in age since she is over 20 years older than me.  She no longer knows who I am. There's more that I will not say because it seems an invasion of privacy, so I'll only write about its effect on me. It makes me sad, and then even more scared for the future. And it makes me even more appreciative of being alive and fully engaged, however challenging and difficult much of life is at this moment.

Thank you universe, higher power...there's got to be a better word for people with faith in something that doesn't necessarily start with a G (or A if you're Muslim) We invented Ms. and more recently Latinx  (a gender neutral term in lieu of Latino or Latina) and Mx (indicating a gender other than male of female), there's got to be a better term for those who believe in something but we're just not sure what exactly that is.

Thank you cheap airfare (super Basic: no luggage, no assigned seating...we don't yet have to vacuum the cabin or fuel up the plane but I imagine that's next). Thank you the state of Maine for beautiful beaches and pine forests, wonderful seafood, independent thinkers, a Republican Senator who occasionally reaches across the aisle, and my best friend.   I've been coming up here for 37 years and wow, that is such a long time! Since The Clash and Ronald Reagan...No wonder people think of us as old.  Although the fact is I like hanging out with people in their 20's & 30's or at least the subset who can see me as a peer the way I felt with F.  We've come full circle...

But despite how I look or I'm treated and the fact that I've clearly slowed down a bit in pace, I really don't feel old at all. Ageism is real and rampant, so ubiquitous it's often not even acknowledged. Still, it's not as bad as other forms of discrimination; we don't have to worry about being shot or unfairly arrested or thrown in jail, we just get patronized or ignored. Having time away and time with a friend it makes me aware of what a difference it makes to feel connected, to be seen and understood, to feel how love softens the blow of hatred and hostility and the very real possibility that things will only get worse. The world can be a scary place. It also can be very beautiful and its inhabitants can really knock your socks off . And make you laugh.

Thank you all around for letting me stop and smell the salt air, for airplanes and friendship and generosity and that fleeting sense of feeling moored as I head back into a sea of troubles [and by opposing end them, as Hamlet said...] Thank you for helping restore me.

goooooaaaalllls, large and small

This time of year is hard. (okay, I admit, I say that every time of year...) Graduations, weddings, vacations, things I watch others celebrate that hold a mirror to what we lack. I know that's not a useful way to look at things; besides being solipsistic it's unavoidably disappointment-laden.  Yesterday in the car listening to "Old Man" from Neil Young's album Harvest, on its 40th anniversary. Wow, I'm old! But Neil is even older - 72! The song is a tribute to the caretaker of the ranch he bought and where he still lives.  Unusually gracious for a young guy, but that's part of what I've always loved about him: he was an old cranky soul in a young man's body, and now a youthful spirit in the old man he's become.

I start crying at the song, and the fact that I've been singing it for 40 years, and whatever else it stirs up in me. Stop! I tell myself, and I park the car and look in the rear view mirror to put on some lipstick, for color and protection, and also to encourage me to smile, even if it doesn't feel sincere.

I go to meet my friend, one of the few people I regularly get together with in this town. We go out to eat at a popular place - deservedly so, given the delicious Israeli food - and I see four people I know, parents of kids in B's class, including one of his best friends, and a neighbor.  Saying hi over and over but having no connection to any of them, I am aware of how much social rejection I've had here.

My friend has experienced the same, which makes it less personal and more situational.  Our sons have been in the same class - at two different schools - since they were about 6,  and while her encounters haven't been quite as hostile as mine, she has had plenty of  incidents where people stare or act uncomfortable, and times when an effort to socialize has been rejected.

She's really smart and warm and fun to hang out with so there's no reason that anyone wouldn't want to be her friend, I'm able to see from the other side of the table.  It makes me feel bad, but also normalizes the experience, that there is nothing either of us have done wrong except for move into a place where people are too busy or popular to add anyone new to their circles, especially someone with a family that they don't really want to spend time with, if they're honest with themselves.  And honesty is hard to come by.

I've projected my underdog nation mentality onto the World Cup.  Let's go Morocco, Tunisia, Iran! There was a slight earthquake registered in the Zocalo in Mexico City after the winning (and only) gooooaaaallll of Mexico's game against Germany. Take that you arrogant Europeans! 

Go Saudi Arabia, go Nigeria, Egypt, Iceland, Senegal and Morocco.  I watch sporadically, returning occasionally to check in.  Too much I should be doing instead, and watching is so much more fun with others who appreciate the sport, recognizing that the low scores that Americans cite as a reason that the game is so dull is actually proof that it's not: opposing teams race across an enormous field with foot work worthy of the greatest ballerinas. And even though the underdogs - they have that status for a reason - don't win much, the occasional upset energizes me.  Gooooaaaallll! Yes, we can!

Gooooaaaalllll!What if we responded to smaller achievements in the same way? I finally put away the winter clothes! I got in all the paperwork for summer camp!!  I'm up to date on paying bills!!! Except for that crazy-big dental bill that would pay for a week away with help for V so we could have a real family summer vacation for once...but we can't so we won't.  Damn our expensive mouths, our expensive health and neurological and mental health needs.  Damn all the uncovered services that leave me burdened and wistful. Damn my mind for spinning out into story lines like this...I'm on top of the end-of-year teacher gifts.  I cleaned out the condiment shelf. I meditated, drank a green smoothie and used my Water-pik this morning.  Gooooaaaallll! 

Things could be so much worse, I remind myself. According to family lore my great-grandmother, for whom I am named, went years without leaving the tenement apartment in Brownsville where she raised ten kids. She'd stick her head out the window and chat with the neighbors everyday, catch up on news, connect socially without ever leaving home.  I'm so lucky - I get outside every day, even when I don't talk to anyone.

Gooooaaaallll!  My gardening efforts are starting to yield fruit/vegetables. There are a few small peppers and the bud of an eggplant and a patch of lettuce. It's not as prolific as any garden I see on my walks with Ruby (thanks girl, for getting me out so much) but things are growing.  I'm posting every week, creating a chronicle for myself, the seeds of something bigger I hope to create.  I'm more Iran than Brazil, just barely in the game. But you have to start somewhere, right?   

week 3: end of school year scrapbook/vision for the future

Here is a photo of V and B walking, which I've made the screensaver on my phone because it makes me smile and feel ever so slightly hopeful for a future when something as ordinary as a walk on a nice spring day might be the norm. You don't have to know that I ask B to do this because I no longer can safely keep pace when he giddily starts skipping ahead, and because this is something they can do together and enjoy equally, a way to spend time, which there is so much of - vast and unstructured and challenging to fill. 

A goal in disability policy/planning is to have people in your life who are not immediate family or paid helpers, but wider community that will spend time and know your loved one. For our cohort this is rare, a dream that is part of my vision for the future when we find or create an intentional community where we all can be accepted and accommodated.

On my list of "what you don't get': Those with mild disabilities have fan clubs: whole communities filled with people who will smile and say hello by name, go out of their way to be helpful and show how open and welcoming they can be.  The rest of us have  cult followings: small tribes of family members, teachers and therapists, and paid help that know and love our kids for who they are, able to appreciate what is special and magical about them while dealing with all that is challenging and difficult.

For V, a good part of this is provided by his school. I'm thankful, yet this time of year it makes me all the more aware of the enormous gap when school is out. (The young woman who cuts my hair yesterday: "It's already mid-June: only 10 weeks left of summer!" with a sort of wistfulness at how short that is. Meanwhile I think "It's already mid-June, and there will be 10 more weeks of summer", with an anxiety and dread at all the time without structure or help.)  It also makes me think of the future life after school, when at 21 he falls off the cliff, and how daunting the task of creating a life where he can continue to be celebrated, to find what we have never had in this surprisingly unfriendly town.  Which makes me all the more grateful and delighted at these end of year events.


Spring concert

V enters through the back door of the theatre, down a hallway of cheering staff. He covers his ears because it's too much on a sensory level, but emotionally, he's happy and proud.  Here everyone is a star.

And when we see him on the stage with the help of his aide and after months of rehearsals, he participates in his class part in the production.  We're so proud because for him it is a great feat simply to be on a stage and not freaking out from all the noise and hub bub. In fact he's enjoying himself and participating fully.  [great video clips which I can't figure out how to get on here right now...]  All of us in the audience cheer and kvell, because we know the hard work it has taken to get here.

Luau party

Next up the BBQ/luau for his after-school program, where he has his weekly social skills group.This more than anything is a vision of what I'd want his/our future to be:  enjoying the camaraderie, engaging in activities and socializing to the best of his ability, but even when not he is comfortable and happy. There are friends/mentors who push him to try badminton, conversation, games, yet understand when he needs a break, laying in the bouncy house looking up at the sun dappled trees, a big smile on his face it's hard to see through the netting. 

End of school picnic

Another perfect spring day for the end of year picnic and annual egg drop. He has no interest but I watch, listening as each name is called as an accompanying hand-crafted object is thrown from the roof.  His aide retrieves his, an egg in bubble wrap encased in a tissue box designed as a guitar. "Look, here it is, it didn't break!" And V takes it from his hand and throws it down on the ground, watching it splatter on the grass.  He never did like eggs, except to break them...
We laugh and let it go. No judgement. No struggle. Just another beautiful day. And I let myself believe there will be many more of them.

week 2: hearts & spades

Week 2 has officially been commandeered by the suicide of Kate Spade...

and the public discussion of depression and mental illness it has engendered. as is often the case with the suicide of a beloved public figure [as I am writing this, add Anthony Bordain to the tragic mix]  In her case the public persona being so fun and quirky, an icon of the urbane, styling city gal many of us aspired to be. 

I've been riveted by the story and its impact, obsessively reading articles and comments from hundreds of readers. There are all the letters from women reminiscing about when they got their first Kate Spade bag, which I didn't realize was a rite of passage for many affluent young women entering the workforce. This is the less interesting part of the story for me, given how it's more about the brand than the person. Also I acquired my Kate bags in an altogether different way:

My parents spouse went to Florida a swanky gala 

and all I got was this lousy t-shirt  fabulous handbag.

Every year she donated them as the most-coveted contribution to the swag bags for attendees of the annual benefit for a wonderful organization that helps women in need: a generous donation, which like most items in such bags, end up in the hands of people who could afford their contents. But for me, they were a treat of something I couldn't swing, not a step towards young adulthood but a nod back: an annual reminder that conjured the spirit of my younger self: adventurous and funny. relatively carefree, frequently in the thick of politicians and fashionistas and performers and all sorts of bold face names, in but not of, a constantly amused and amazed interloper. 


The comments and letters that have been pouring in are heartfelt, especially on Jezebel, where readers have let go of their frequently snarky tone for touchingly honest conversation among a wide range of women.  They speak with candor of depression and how misunderstood it is, especially the peaks and valleys that people with mental illness experience.  As Kate's family described, you can seem and even be fine one day (because they are not the same thing, not by a long shot, as the millions of us who feel compelled to hide our worst moments because of the enormous social stigma that still exists can attest) and be drowning the next.

Jezebel is an online site geared toward a young female audience - frustrating because I'm just as interested in their feminist take on the news and pop culture - and often dismissive or condescending to anyone over a certain age: 40? 50? At what age are we suddenly referred to as grey's or old's? Why isn't ageism as verboten as racism and sexism?  Hey girls, we're all going to get older...if we're lucky!

Kate Spade was not. Even being rich and successful and well-known, even having a beautiful and loving family isn't enough to save someone in the fierce undertow of suicidal depression.  She was 55, which is only young when you're dead. (that alone should be enough to change how we view women no longer in their youth.) 
Over and over I read some version of my story,  as women connect with each other in a way they likely don't in person (outside of a therapy setting):

Oh my God, are you me? I generally feel like a naturally happy person; at the same time, it is pretty easy for me to end up getting swamped by the depression that coexists with my baseline level of happiness.

These threads of women telling their stories is social media at its best: a way to connect and feel that you were not all alone in whatever you were going through, the viral arms embracing strangers in the depths of loneliness, providing a lifeline to the hopeless. And yet that sort of raw honest sharing is far outweighed by millions of self-promoting or highly curated depictions of idealized personas or brands of how we wish to be seen.  Even knowing the effort made to maintain the brand, having it in my face obliterated my inner wisdom, the pointlessness and possible danger of "comparing our insides to others' outsides". 

It’s time for brands to go back to being depersonalized concepts with a fictional logo or mascot. Most people aren’t constituted to represent some huge concept with and for their entire lives.  It also puts the livelihoods of too many people at risk based on missteps or weaknesses of the human who supposedly epitomizes the brand. 
  
But even the most enlightened and useful articles tend to put too much of the onus on the sufferer and not enough responsibility on the rest of us to listen without judgement, to stop offering uninvited, useless advice, to stop dismissing those with depression as complainers, people who just don't try hard enough.  I've become a phone-aphobe, someone who dreads social gatherings and rehearses my response to the inevitable "How are you?"s from people. I realize for the most part they don't care about the answer, but I don't like to be dishonest. I've settled on "Hanging in there" with a shrug of the shoulders and a slight smile, and then without missing a beat I ask about the other person or bring up some shared topic of interest so I don't have to continue the sham.  

If we really worked on removing stigma then I and the millions of people like me could say - not to everyone, but with discretion, to those who really do or might care: I'm really depressed, I'm not doing well, I'm having a hard time lately, whatever our truth is we would speak it and people would look us in the eyes and say, I'm sorry to hear that, and then they'd listen.  They wouldn't offer unsolicited advice or ways to fix things or reasons why you should feel better. If warranted, they'd offer a hug or help if there was something they could do, like taking care of some of the daily living tasks that are especially challenging when you are feeling completely depleted from depression.  Most of us don't have the option to lie in bed with the covers over us.  We carry the burden while holding down jobs or raising children or taking care of homes and pets and loved ones and the many tasks of daily life, no matter how dreadful that life can feel. We are grateful. We are invested in pulling ourselves out of the deep holes we find ourselves in. We are seeking professional help or going to support groups. And still sometimes it's not enough. 

Major depression is not the same as having a bad day or being a little sad about something it's appropriate to be sad about.  Depression and PTSD and bipolar disorder are diseases, people! Just like high blood pressure or epilepsy or asthma, requiring treatment. Often long-term.   

I feel fortunate that I've never been suicidal at all; I'm deeply greedy for a long life, in part because the last decade has been so mentally exhausting and I want to compensate with a happier old age.  In fact even with depression I am an easily happy, appreciative, delighted person.  Give me a smart funny person to hang out with, a well-written article/movie/sitcom, a good cup of coffee, a perfectly grilled fish taco, a hammock under a tree, the sound of water, a great piece of music, I could name hundreds of things I enjoy, that bring me joy.  Like this bag. Every time I put it over my shoulder it made me smile. I wore  it until it became unusable from wear and tear.  It's a reminder now, of smart funny creative women who carry their secrets.

week 1

Going to church: preface to a new phase

Last week. The monthly support group I attend at a local church falls on on my birthday. We are making Vision Boards, which seems like a great way to start a new year of life. I’m not a very crafty person, and I can be cynical about this sort of exercise, but I’m feeling pretty hopeless these days so I figure what can it hurt to cut and paste an assemblage of words and images that represent those things that bring us joy, and the faith that we can access them.

I’m here for the fellowship more than the activity, the chance to connect with this small group of women  – all mothers of children with disabilities or mental illness – that I have grown to know, admire, and love.  Seeing each other just once a month we have the perspective to see the growth and change we've experienced, to gain strength in seeing how others persevere through even the most dreadful of circumstances: hospitalizations, confrontations with police,  struggles to find schools and therapy that will help our children to thrive, challenges to keeping ourselves from sinking into despair.  We listen, commiserate, laugh, connect and after an hour and a half I have a bright green poster board filled with what for the moment, I can imagine returning to my life:  financial security, rewarding work, freedom to travel and explore, joy, faith, community.

I go to use the bathroom before leaving, which requires going through an AA meeting in progress in the large kitchen/dining room down the hall. As always, I avert my eyes in respect of the anonymity of the program.  As I’m leaving I hear someone ask, “Any anniversaries?” And a barely audible voice responds, “I’m celebrating one year.”  I exit the room to the sound of applause.

One year, what a great accomplishment! I think of all the hard work he’s done to get there, and the people in the room that continue to help him, the way that he in turn inspires those new to the program or struggling to keep their sobriety, just as he has turned to his sponsor and other old timers, the circle of service and camaraderie that lifts all spirits.

One year, I think, and it inspires me anew. One year from now, what might I be celebrating? Is it possible that my work or ideas will ever be valued, my voice will be listened to again?  Can I be of more service? What if I simply celebrated the effort, the act of not giving up? Of allowing my life to be what it is with all the insight and humor and honesty of someone who doesn't look away from the truth.  Could I do that as a way to inspire and encourage even one other person who feels as I do now, to show that nothing is permanent, including our darkest moments?

I stopped writing this blog, as I have several times before, because it seemed to confirm my worst fears about the frequent chasm between having a voice and being heard. I recently read that over 90% of blogs are abandoned within the first year because of disappointment that no one is reading them; at least I'm in good company.  

So I'm going to reclaim this space because it's free real estate, and a more cohesive, manageable way to chronicle the next year than the half dozen notebooks I scrawl with my thoughts and daunting to do lists with items that will take years to complete. (1. research, visit and  get on 5-10 year waiting lists for residential programs for V while simultaneously finding resources and then coordinating help to increase the independent living/community safety/social skills that will make it more likely to be accepted into said programs)  If anyone out there wants to read it, knock yourself out. Seriously, I'd love the company but I have no expectations anymore, which is very freeing.

So here’s Week 1:

1. Home

Glad it's June because May has been flowering trees followed by lots of rain and challenges.V has been obsessively putting on layers and layers of shirts, sweatshirts, jackets, sometimes four or five at a time. He’s been wearing hoodies over a pressure vest for sensory input (and yes, I realize that if I had a black teenager with autism there would be higher stakes for that uniform), but clearly he needs even more input, hence the layers.  As is often the case when problem-solving with someone with constrained verbal skills and lots of sensory issues, we can conjecture but it’s hard to solve these continual mysteries.  

It's a struggle to remove all the layers once he has them on. He's 17 now - lanky and lean yet strong and stubborn so when he refuses to take them off, there's not much we can do. Often the only option is to suggest a bath so that he will undress. He's been exceptionally clean lately, and we finally just emptied out the closets and the hallway hooks and put everything  in the attic or in hiding.  

So now he’s become obsessed with...the hangers! Yup, he's carrying wooden hangers around wherever we go, which reminds me of many years ago when he had a similar affinity for pieces of wood he would find outside. He even had a pet log for a while which he tried to take everywhere. (He cried when the bus driver wouldn’t let him carry it to school.) 

Yes, it's okay to laugh. And later, to cry. And to know that some days all the meditation, walking, deep breathing, journaling and healthy food in the world won't do as much good as a long Netflix binge, dissolving ourselves into the lives of others, as Auden wrote.  

B is home for the summer. Hard to believe he is half-way through college. Great to have him home although he is not around a lot, between starting a summer job and hanging out with his high school buddies. I’m glad he has such a great tight-knit group of friends, a social life. It makes me feel a little better about being stuck here, that it's been a good place for at least one member of the family.

2. The world: Idea of the Week

From the network that didn't bring you Girls, Friends, or the many other comic collections of relatively privileged, photogenic young people making their way in the world, we bring you: Darlenes.  

While thousands of articles, tweets and thought pieces have predictably dissected the recent downfall of Roseanne, the second most prolific tweeter of racist, anti-Semitic rants and unfounded conspiracy theories that are now acceptable to air in public, let's remember the short-lived attention on the heart of the show: the trajectory of Darlene, the smart, sarcastic, talented younger daughter who broke free and pursued her dreams (college, writing, life in the city) only to find herself a broke, single mom in her 40's with no health insurance - yikes! - moving back in with her parents.

She & her kids, her Aunt Jackie, and a wild and crazy group of economically insecure women in their 40s-60s (kids welcome) pull a big heist (update bank to some deplorable dot.com billionaire?) and use the money to:  start a kibbutz; fund the campaign for one of them to run for public office (season finale: she wins); open a communally run farm-to-table restaurant/animal rescue center/affordable daycare center and job training program for people with disabilities...the possibilities are endless when you have a group of smart funny older women who have a reason to be bitter. Bring on Barbara Eirenreich as a consultant along with a member of the civil rights brain trust that helped with the Starbucks 'sitting at a table while black' incident, and a writing staff - including any of the original writers who are game - that is diverse and funny in every way.   There is an audience for this, really.

3. Grace in Dirt 

I’ve planted most of my garden, which is physically and spiritually fulfilling. I prepare my plot, pull weeds, mix seeds with egg shells to help enrich the soil, plant and water.   With each seed I name and envision all the transformation I dream of, and the dirt holds the memory of things taking root.  Gardening is the perfect activity for someone in the depths of despair, a way to cultivate faith that things do grow and change.

Stay tuned as sprouts push through the ground...