Respite

 

You haven’t seen much of me lately, and I’m sorry for that. I can’t say why, exactly, I haven’t visited and written. 

Read the rest at my Substack.

Help

The title is not a cry for it.

Help!

On help

I learned recently that Sophie was eligible to receive a home health aide, but I felt dubious about the whole thing for reasons I won't spell out since you've heard them ad nauseum for as long as I've been tapping away here. When she received a very generous number of hours, thanks to the great State of California and the Regional Center, I told my father and he said, I find that hard to believe, and I said, I know. I told my therapist about it, and she said, Wonderful! and I said, What will I do with myself in the mornings? and she said, Rest! and I said, What do you mean? and she said, Lie on your bed and read or go into your room and write and I mused on that for a while, lying there on the couch in her office where I've spilled the darkest of my guts and wept and been guided and helped for years. Asking and receiving help is acknowledged by most caregivers I know as two of the most difficult things to do, and while a lot of that has to do with the actual busy brain and body work it takes in terms of time and arrangement (CEO of Sophie, Inc. reports), a lot, I think, has to do with this deep, psychic attachment we have to our unique children and young adults.  It's less about burden, more about acceptance  and everything about love. Throw in guilt and responsibility and the ridiculous and very much American ideals of individualism and pull yourself up by your bootstraps culture, coupled by an ableist society that looks on disability as something so hideous and burdensome that we hear things like would you have had an abortion if you knew? or I'd rather be dead than dependent on someone or I could never do what you do -- well, it's damn hard to ask for help and even harder to receive it.

I am receiving it, Reader.

Sophie's morning aide is a delightful young woman who comes to the house weekday mornings and gets Sophie up and dressed and groomed (see above). She makes her breakfast and feeds her, brushes her teeth, packs up her stuff that she needs for her adult day program and then drives her there in our accessible vehicle. She talks to Sophie and is incredibly gentle and meticulous about her hygiene, the style of clothes she will wear that day and can fix Sophie's outrageous hair into all manner of amazing styles. She gives her choices and treats her with dignity and respect and humor. It's unbelievable, actually. The only thing that she's not allowed to do is administer medication, so I do that. It took me some time to train her and even more time to will myself into letting go, but guess what?

Reader, I am resting.
























The universe is abundant.








Here's that Extreme Parent Video Project that I made years and years ago with the help of other caregivers, many of whom I had only met online. You'll see that asking for and receiving help was a common theme. Enjoy, share, ask for and receive with gratitude and grace.

Writing, Respite and Denali

I'm still here in beautiful rural Washington. There's not much to do but relax and listen to the birds, putter around the beautiful house, wander outside and chat with the goats, read novels (Tommy Orange's There, There and Ottessa Moshfegh's Eileen), read some poetry (Marie Howe's Magdalene), eat a plum, eat a peach, let a corner of a chocolate bar melt in my mouth, suck on a Tootsie Pop and gaze at the Bird Photographer.

I haven't written much, but I've arranged and re-arranged my hundreds of pages into a sort of order. It took hours and hours to do that much, but a structure is finally, literally, at the tip of my fingers. My plan is to finish up in the next day or so and then, when I get home, re-type the whole lot and send to the editor as a rough -- extremely rough -- draft.

The Pacific Northwest in the summer is perfection. It was here -- or up in Victoria -- where I spent a week by myself only four years ago, a recipient of the magnificent Heather McHugh's organization, Caregifted. That week changed my life and opened me to the possibility of and hope for more respite from the life of caregiving that, while enormously rewarding and filled with grace, has also drained me of myself or the essence that keeps me vital. I realized then how important it was to seek respite in whatever way I could, to open myself up to the possibility of replenishment and to work just as hard to get that as I do to take care of my daughter. While I am aware of the enormous privileges I've been granted that others just do not have, I also remember the nearly twenty years without significant respite. I remember what it was like to have no hope for it.

We caregivers must get back to ourselves as if our life depended on it because it does.

photographer: Carl Jackson

Listen to the latest Who Lives Like This podcast -- a rousing discussion of nurturing the self with Paige Figi, the director of Coalition for Access Now and the mother of Charlotte of the famous Charlotte's Web cannabis oil. Jason and I interviewed Paige just a week before she climbed Denali, the highest peak in North America. Here's the link:

Who Lives Like This?!

Yeah. I know. Not all of us will climb Denali, even if we desired to do so. Yet, still, there's joy to be had no matter how you choose to find yourself.

As my friend, writer Chris Rice said the other day, Your book is your Denali.


Onward.

Cambria

Oliver and I, along with my dear friend Cara and her two daughters, drove up to Cambria yesterday. We''re spending two nights here, just hanging out and doing -- basically -- nothing.

It occurred to me the other morning when I was talking on the phone to my friend Christy Shake that the only way to survive the life we live as caregivers to children with seizure disorders is to replenish ourselves in any way we can and to do so regularly.

I know this is a privileged thought -- I know that there are many people who are out there doing the work we're doing who don't have an opportunity to get away, who dig down continually to find strength to keep going. I know, too, that some people just won't get away or refuse to get away or believe that they can't get away because there's no one who takes better care of their child than they do.

I don't know what to say to that other than it's become about as necessary to me to get away as it is to keep doing what I'm doing. As necessary and in order to live, even. Cognizant of my privilege, I can tell you that it's only been very recently that I've "gotten away" and not felt guilty about it or worried that something very bad is going to happen to Sophie. I'm going to say those things without judgement or explanation and will ask you not to as well. Tell me anything, that is.

Caregivers of severely disabled children, especially those who've been doing it for decades, know some things and we know them deep. Things haven't gotten easier even as I've learned how to dissociate and then come back. I don't know the word acceptance even as I surrender. The word toll. Taken.

There's everyone and then there's us.

Three things:

The cumulative years
The present
The projection into the future

I feel joy in my core even as that deepest part is dark. Memory.


I had a long conversation with an Italian artist in his studio amongst sculpture and paintings. Angels and toreadors, winged things, dancers and an architect, the suggestion of things broken and things free. Sophie in all of it, as was Carl and his birds. The words wing and soar. I'm most myself, both consumed and generative, in art.

Nature, too. Respite. Respire.

Everyone forgets that Icarus also flew, the poet Jack Gilbert wrote.

Love is a Verb, Part 345

Crescent Lake, Washington

I slipped away from sunny California and traveled first by plane to Seattle and then by ferry and car to  Port Angeles in stormy but beautiful Washington for a long weekend. I joined my friend, fellow writer and caregiver Jeneva Burroughs Stone, and writer/caregiver Leslie Haynes at the invitation of Heather McHugh, the MacArthur prize-winning poet who founded the organization Caregifted. Many of you who've been reading this blog for years might remember that I received a week of respite several years ago, the first time I'd been away for more than a few days in more than nineteen years. Caregifted provides respite weeks, free of charge, to family caregivers of the disabled who have been doing the caregiving for at least ten years.

That week in Victoria is documented on my blog, and it quite literally changed my life. I grew to love Heather and what she is doing for those of us with these unique, often arduous but also deeply fulfilling lives. Most, if not all of us are exhausted, and while we might have learned some profound perspective, the relentless nature of caregiving for a severely disabled son, daughter or spouse is something that few people -- even close friends and family -- ever understand. I'd say that Heather McHugh is a person who does understand this -- inexplicably, as she has no children of her own. She is a poet and an angel -- and I don't say that lightly.

There is no other organization that I know of that does what she does, and while it's a small one, the impact of Caregifted is deep and intense. Heather invited us to her beloved Pacific Northwest  to have a kind of creative pow-wow to figure out how to keep the organization going. Given the disastrous election, many of us who work with and care for our disabled children and young adults are justifiably terrified at what might happen. We are certain that any services we might receive could very well be cut or drastically reduced. We are concerned about the rights of our children and all people with disabilities and about our ability to fight successfully for them. Disability rights are civil rights, and they will be threatened. There has been real progress under the Obama administration in the areas of education law, the Affordable Care Act and other issues. Many people don't realize that, but there is still much work to be done. The cognitively disabled, in particular, are overlooked, as are the severely disabled, and our lives as caregivers are seriously impacted by a culture and government that doesn't acknowledge or help us.

Caregifted is an extraordinary and very unique organization. Since the election, many of us are mobilizing through concrete action to help organizations that are helping the disenfranchised. I am making monthly donations to Planned Parenthood and to the ACLU. I plan on registering as a Muslim should the Trump administration make registration a priority, and I am ready and willing to do what it takes to resist the mockery of a presidency, the band of mostly white men who surround him and the legion of their supporters. I know that many of you are doing the same, supporting organizations that support people of color, the LGBTQ community, climate change initiatives, Muslim and other religious minorities, as well as women. I urge you to add the disabled to your list. Caregifted is decidedly NOT a political organization, but it is an extraordinary and very unique one. I would love if you'd make a contribution, however small, to Caregifted. Helping caregivers helps the disabled. Rights for the disabled are civil rights. Trust me on that one.

Here's their website. Donate if you can. Stay tuned to hear about screenings of the wonderful documentary Undersung. We are a small group, but you are a mighty one. Share it and tell your friends and family about it.

Thank you!

Love It Or Leave It

Remember that saying? I think it's what the conservatives said to the protesters in the sixties. Not a day goes by that I don't think about where I'd like to move if I could move. I don't know why I don't have a strong sense of "country," or even a modicum of patriotism. I consider myself blessed to have been born here to a life of relative privilege and am grateful for how my parents brought me up, but I don't think of America as the greatest country on earth nor am I grateful for my country in the abstract.  The older I get, the less inclined I am to feeling proud of being American, given that I can sometimes only summon up the observation that we (so far) can go to the polls and vote and not get shot. Lately I'm just sort of overwhelmed by what's going on with the gun control clusterf*^k, the Drumpf thing, the fact that each summer gets hotter (it was 108 degrees in my driveway yesterday) yet people I know are climate change deniers, that the treatment for infantile spasms is roughly the same in 2016 as it was in 1995 yet millions of dollars have been spent for research, and that I don't have anything in particular for Sophie to do this summer, the 22nd of her life.

Let's talk about that last thing first. The LAUSD messed up as per usual and didn't assign an aide who knows Sophie to accompany her to summer school. When I made a modest stink about it during the last week of school, I got the runaround with the usual requests for me to speak to Downtown. For those of you living in the hinterlands, Downtown is where The LAUSD headquarters are, and I imagine it to be a box similar to the one in Oz where one ridiculous man stands behind a curtain and fiddles with a bunch of knobs. I did attempt to reach Downtown but never got a call back, and repeated requests for Sophie's school's Special Education Office to help me only resulted in the advice to call Downtown or to accept the fact that we are not required to supply an aide that knows Sophie. 

Today I got a notice in the mail letting me know that if Sophie doesn't show up at her assigned Summer School Location next Monday, she will be withdrawn from the system.

Cue Mrs. Braddock's screaming laugher.

Reader, I've folded.

I've given up.

I realize that asking for the obvious from The Man Behind the Curtain was a fool's errand. Yes, I could have packed a proverbial pistol and fought The Man with my silver tongue, but I'm plumb sick of fighting for mediocrity. Sophie's home this summer, and you should know that for young adults like her with severe developmental disabilities, there are few programs and not much to do. I'm not saying or even thinking that we're somehow entitled to programs. I'm just stating the facts. This is what life for the severely developmentally disabled young adult looks like in Amerika. The programs that do exist are often very expensive. I did sign Sophie up for one day a week of what looks to be a terrific summer camp, but the daily rate is about a million dollars, so I'm going to have to get creative for the rest of week. Saint Mirtha will be coming to help entertain and take care of Sophie, and damn, I'm grateful to have the means to pay her.  I'm grateful for everything I have because I know that many people don't have even a third of what I do, yet they keep on keeping on. We'll keep on keeping on, too. That picture up there is Sophie trying out the swing in the gym where the camp is going to be.

I started this tedious post by kvetching about moving from the country, how not a day goes by that I don't have some sort of fantasy of packing it all in and heading to Costa Rica or an adapted watchtower in one of the Canadian national parks or a hut somewhere in Mexico. I'll bring one pair of jeans, one bathing suit, a couple of black tee-shirts, a few bare dresses and maybe some panties and a bra but not much else. Does anyone want to join me?

Hedgebrook, Writing and Space Dreams

Hedgebrook isn't a retreat. It's an advance.

Gloria Steinem

I bet you've forgotten that last year I was awarded a three-week writing residency at Hedgebrook on Whidbey Island. I haven't forgotten, but I do admit to thinking it was a dream and that June would materialize and I would be doing the usual June kind of thing which I write about ad nauseum here on the old blog. The thing is, it isn't a dream, and in a little over a month, I will be flying to Seattle and then to my little cottage to write and walk and read for three whole weeks. I met a poet the other day who had just completed a residency there. She was also a judge for the grants, and while the applications are anonymous, she told me that the nearly 1500 of them were of very high quality. She said, You must be a really fine writer, and I demurred and then wondered why I couldn't just accept that I'd gotten one, that I had worked hard for it and that this three weeks is deserved. The place is magical, she said. You will write and you will rest.


Again, a dream.


I  told a friend that I write now whenever I have a free moment and certainly for hours and hours each night. There's no writer's block for me, to tell you the truth, and the writing is a pleasure, not work.  I write under pressure, the pressure of life, in the spaces around life -- a life of teenagers and the minutia of extreme parenting (the seizures, the diapers, the wrestling with systems of care) -- and it will be quite an adjustment to just write with space and life merged. Does that make sense?

This place expands time.

Carolyn Forche

It's still a dream, I realize, as I type it out.

I'll be working on a project that I've longed to shape into a book. I'll be drawing on some of the How We Do It posts and hopefully weave them into meditations about disability and identity, about what makes us human or Other and so forth. It's inchoate and also pushing to be written. I have my old manuscript as well to shape up and finish, a memoir that has never been given a proper story arc and that demands an ending. I think I have an ending in our cannabis story and hope to gain some of my juju back and finish it up.

Check out who is on the Creative Advisory Council at Hedgebrook here.

Good lord. I told you it was like a dream, and I half expect to get a peck on the shoulder at some point with an apology for what was, apparently, a mistake. Oh my goodness, they might say, the Elizabeth Aquino that we chose is doing cutting edge work about poverty in the Phillipines! We are so sorry! Then they'll hand me a basket of food and a kayak to make my way back to the mainland, back to life and writing in and of the spaces around that life.


Wake up!

Cat on a Hot Tin Roof That Jack Built, Part Three***

There's the house that Jack built that consists of these inane back and forths with the company that is going to administer the EEG, Sophie's doctor and the insurance company. There's also another house that Jack is building that consists of inane back and forths with the company that is going to provide the wheelchair for Sophie, Sophie's doctor, the insurance company, California Children's Services and Medi-Cal. And today, to top it all off, I got an email from Sophie's service coordinator at the Regional Center (unique to California) asking me to account for the 14 hours a month of respite that we are allotted at a little more than $9.00 an hour, as well as how it fits in with her IHSS hours and her daily activities. I was asked to fill out a weekly schedule, hour by hour, of Sophie's day -- for 24 hours. She attached an excel sheet as an example of what she expected me to do. Please note that I keep careful records, as I'm supposed to do, for all the funding that Sophie gets. I fill out timecards, scan them and send them in when I'm supposed to as well. And if you're a newbie to the houses that Jack builds, these particular services are wonderful -- and entirely necessary,as I'd really, really go insane if I didn't have them. The ultimate purpose is to enable me to stay at home with Sophie and to enable Sophie to stay at home instead of surrendering her care to the state -- or one of the other houses that Jack has built. I will add that any doubters might consider my own tax-paying ability, my own relinquished career dreams, my literal ability to have a full-time job and remain flexible to care for Sophie daily -- and deal with all of this bullshit, too.

I understand the necessity of weeding out the bilkers, the cheats, those who are eating bonbons or even those who are very wealthy yet still claim benefits. But Sweet Jesus God and Good Lord and Dear Lord Almighty and Help me, Rhonda.

I forwarded the email to my friend and comrade S in New York City whose caregiving duties would curl the tiny little hairs on your toes if I told you about some of them, and she of the insane sense of humor quickly sent this back -- probably while she was on hold with the New York City transit system or one of the many nursing agencies that she deals with daily. Her suggestions on how I should respond to the caseworker's request made me laugh out loud and cry a little, to tell you the truth, in gratitude for what saves me in the end: laughter and friendship. The only thing I've changed is the name of my "caseworker." Let's call her Joan.

Dear Joan,

I spend those hours in passionate rapture with Javier Bardem. Do you need more precise details than that?

Love, Elizabeth

Dear Joan,

I spend those hours eating spaghetti. With clam sauce. I can send the recipe if necessary.

Love, Elizabeth

Dear Joan,

I spend those hours crying. Would you like me to account for the number of tears, Kleenex used, and times I blew my nose? Please advise.

Love, Elizabeth

Dear Joan,

I spend those hours writing little ditties about the insanity of it all. My next song is actually dedicated to you.

Love, Elizabeth

***Long time readers of a moon, worn as if it had been a shell, might have noticed that I post the above photo quite a bit on this blog. Elizabeth Taylor's Maggie the Cat, particularly in that photo, captures all of the languour and attitude and sexiness that reside within me, that apparently the Powers That Be are determined to extinguish in their belief that my life consists of lounging in a doorway in my slip, a bottle of alcohol just out of sight along with Paul Newman languishing on a bed with his broken leg, not to mention Richard Burton off-set with some new jewelry.  I hope that if I keep calling her up and posting her picture, I might not lose sight of that.

What Heather McHugh, Caregifted, Molly Ringwald, Robert Pinsky, Poetry, Respite, Seattle and I have in common

Victoria, 2013

That's me and Heather McHugh, the extraordinary poet, MacArthur Genius Award winner and founder of CAREGIFTED, the organization that sent me on a week-long respite trip, all expenses paid, last June in beautiful Victoria, Canada. Keep reading the rest of this post to learn about an upcoming benefit for CAREGIFTED in Seattle right around the AWP conference. I'll be at the benefit and would love to see any of you there! Please share if you're a caregiver or a Seattlite or just know of people who might donate to this worthy organization.


via Heather McHugh's Facebook page:


PRETTY IN PINK star Molly Ringwald not only won hearts by doing John Hughes movies, but she also sings JAZZ! She'll be coming to Seattle on Feb 28 to do just that, a performance for CAREGIFTED caregiver respite-- and so will emeritus US POET LAUREATE Robert Pinsky and world-touring jazz pianist Laurence Hobgood-- all three are taking time out from their own tours in order to come to Seattle to perform for the benefit of the weariest souls on earth-- and it'll all happen at the eye-boggling Chihuly boathouse (a private venue). Only people who get their tickets at this link can come!

http://www.strangertickets.com/Browse#search=Chihuly%20Boathouse

With more than 10,000 writers due to come to town for the AWP conference that week, and only 175 tickets, the slots will get swallowed up-- so if you have an interest in caregivers or if you already live in the incomparable Pacific Northwest, you might want to grab your tickets BEFORE the announcement is posted elsewhere this week to all the out-of-towners making their own plans for a week here.. ALL proceeds go to respite for the weariest of family caregivers-- these are the ones who have spent a decade or more giving up opportunies of their own in order to take care of someone who can't take care of him or herself. And they do it until one of them dies. Talk about love. No better Valentine's day gift than this one, for you or anyone else.

Caregivers of the kind CAREGIFTED serves are saving ALL OF US billions of dollars of institutionalization costs-- and they are invisibly working day and night in every extended family, every neighborhood. Most people turn away, if they notice at all. But the fact is, these caregivers can teach us the truth about love. Our first single dad caregiver (of a severely disabled teenager) is taking his CAREGIFTED getaway in 2014-- he and another caregiver who will be at this Chihuly Boathouse Benefit Soiree and both are featured in this clip: http://www.youtube.com/watch?v=iZ78gHne0LM

(The other is the woman who MADE the film clip, the cherishable Elizabeth Aquino). At the event Feb 28 (5 to 8:30) you'll be able to raise a glass to both of them, and 8 other CAREGIFTED awardees, and also see what Adam Larsen has been doing lately with our CAREGIFTED documentary (he just appeared on POV on PBS).

Not to mention a chance to bid on rare art works like a signed Samuel Beckett novel's first edition, and a signed Linda McCartney photograph, holidays in Whistler and Vancouver Island, and more...

This event ain't cheap, but includes all these amazing people, artists, performances, food, drink, and a location that you'll never see anywhere else-- one-of-a-kind, a real dazzler-- and your choosing THIS for a Valentine's Day present to someone who can be in Seattle Feb 28 will ensure we can go on giving our all-expense-paid weeklong getaways to these most desperately-tired caregivers from all over the country.

This is MY Valentine's gift to YOU, letting you know before the rest of the world does. Now pass it on, yourself, for love!

http://www.strangertickets.com/Browse#search=Chihuly%20Boathouse

Canadian Respite: 3 1/2 Weeks Out

I'm seeing Canada*** about as well as Sarah Palin did Russia from Alaska. She could see it from her backyard, right?













***For those of you new to the old blog, I went on a week long trip to Canada recently, given to me by a wonderful organization called Caregifted.  I hadn't been away, truly away for nearly twenty years, and damn, it was good. I'm trying to hold on to the soul restoration I experienced.

The Mind of Summer

Chinatown, Victoria, British Columbia

Maybe it's the week of rest and relaxation, now a sort of distant thing but for the quiet within. Maybe it's the plunging back in, the laundry, the late mornings, sleeping in, the shouts of summer, the brooding, the heavy blanket of relationship. Or maybe it's the five thousand, six hundred and eighty-six episodes of Brothers and Sisters that I've watched on my Kindle Fire.  I'm reading The Middle Passage, a slim book written by a Swiss Jungian analyst. Maybe it's the subtitle of the book, From Misery to Meaning in Midlife. In any case, I'm hard put to write anything at all.

Rubber Ducks in a Bird Bath

I woke up this morning with a bit of a headache and bits of thoughts, inane thoughts, and I wondered, inanely, why bits of thoughts come so early, so apropos of nothing, the day being new, the body having rested.  Rubber ducks in a birdbath. As I unpacked yesterday, I wondered when the week spent in Victoria would recede. I changed my young adult's diaper seven times yesterday, put each one into a plastic bag, twisted and tied a knot into the top, threw it into the garbage outside and lit candles in her room to diffuse the smell. My mind was a lake, placid, serene, at worst, matter-of-fact. Hysteria is so often tamped down by those of us doing this extreme parenting, particularly those who have done it for decades. Even a decent practice of meditation brings one only into the present in the present, if you know what I mean. The past, the future, the eternity of it all, leaves traces, bits, at least for me, even on the edge of equanimity. But that week of respite from it all, (even the money, taken care of) filled me up with it all. I glimpsed who I might have been without it all and brought her back, her bits, right here on the edge. Rubber ducks in a birdbath.

Blogaversary

photographer: Heather McHugh

Hey, it's June 30th!

I'm sitting in the Victoria Airport, waiting for a flight to Seattle and then onward to Los Angeles and home. I have been reflecting about my week here -- how enormous, how fantastic, how very restful it was. I still can hardly believe that I had this opportunity -- that it was given to me by a poet and a person who seems to understand -- profoundly -- the needs of caregivers. I realized, today, that I learned of Heather and Caregifted through Jeneva, who I learned of through Vicki, who I learned of through Stephanie and Andrea, who are all writers and most bloggers and that this community projected me toward this week in Victoria EXACTLY FIVE YEARS AGO, TODAY, that I began blogging.

So on this day, June 30th, I send up thanks for blogging, for that seemingly innocuous day in 2008 when I started clicking away here and met you and you and you and this.

This.

(And now I'm off to walk outside onto the tarmac and climb aboard one of those very small planes. One just came in and people are wandering around all smiley and happy that they're in Canada. This place rocks.)

P.S. My second blog post, on July 1st, 2008 is one of my favorites. I'd forgotten all about it.

'Bye, Canada!

Respite, Day 6, Solo Drinking and Walking

So, I woke up today and spent it alone. I walked all over the city, did a little shopping, ate a little pizza, drank prosecco at lunch, staggered to a spa where I had a scheduled massage, possibly the best massage I've ever had by a guy named Carey (maybe the best massage I've ever had by any guy named anything), walked over to the Empress Hotel, elegantly and almost absurdly colonial, sat in the famous Bengal Lounge, ordered first a drink called the Empress 1908, consisting of Empress tea-infused vodka, lemon juice, simple syrup and egg white -- my god, it was good and totally not sweet but perfectly weird and tart. It came with a tiny little scone because of the tea thing, and I ordered a pint glass of tiger shrimp and cocktail sauce and then a beer! Oh, and the waiter brought me a finger bowl while I ate the shrimp. I finished at around 7:00 and since Javier couldn't meet me, I staggered home in the bright Victoria sunshine (it's the first day of sunshine and for these Victorian folks it was as if the heavens had opened and Jesus himself had descended such was their joy), and now I'm waiting for the sun to start going down which will be in another couple of hours (north country fair) so that I can walk over to the water and offer up my gratitude to the universe that made Heather McHugh for this week.

Yesterday with the Poet

I have yet to wake up from this dream because each day dawns and there is something new to marvel over. Heather took me to Butchart Gardens yesterday. They're famous -- world famous -- but I admit to feeling jaded about gardens when she told me where we were going. I live in southern California. I know some pretty wonderful gardens.

Well -- these were some amazing gardens, unlike any that I've ever seen.

Over the top.

Where's Javier? you ask.

Ridiculous, right?

Heather is very beautiful.

Here we are. It would only be cliche to say that Heather not only writes poetry but actually lives it -- her care-giving of caregivers is -- well -- I don't know what to say.

Enough? That picture right above is where the gardens end -- right at the Pacific. Outrageous.

Did I tell you about the food, yet? Heather and I both love it.

What a coincidence (although there are probably no real coincidences --)

We left the gardens sated and tired, but the skies were finally clearing up so she took me to her tiny apartment up in the sky where we looked out over the water, at the snow-topped mountains that had suddenly appeared.

I know, enough. Too much. Uncle.

Are you breathing heavily?

I'll save the ones of me and Javier for another day.

What respite looks like

Respite looks, for the first couple of days, like a reluctant walk to a rocky beach, a mussed bed behind you. It sounds like a nag, a whisper, a wheedle to put down the book, stop playing words with friends, go outside. It feels like a gray and heavy blanket, thrown over you with your troubles and despair, your marriage and your children, your bitter edge not sharp enough to poke through the weariness. You are naked, true, but heavy, your softness, irritable, folded over onto itself. That is the first two days of respite, maybe even the third, the spite. You know the rest. On the third, the fourth day, respite looks like a mussed bed around you, books, a computer, a binge of television drama, a gray day outside. It sounds like a lover, a whisper, a tendril of words to read that book first, and then this, then write, then climb back into bed and read that, close your eyes, listen to the birds for a moment, the drone of a saw, close your eyes, do that. It feels like hot water in a bathtub, perfumed with soap, not quite covering your bitter edge until you slide down further and let it. You are naked, true, but light, floating, your softness languor, amused. That is respite on the fourth day, the breath, the respir.

Things I've seen

Last night, I went out to eat with The Poet at a strange and wild restaurant that I couldn't begin to do justice with words. Think stuffed animals -- not the toy kind -- antique zoological prints, a mantelpiece, strange and careful collections. Think Sigmund Freud's boudoir, as the Poet said. Think the aching and fussy decadence of Vienna with the mirth of Fellini. Two young men played music, one a trumpet and the other a guitar and then a saw. Yes, a saw. It sounded like a woman moaning and not in a good way. Who knew that scraping a bow through the tines of a blade could disturb the air? There were crows (stuffed) here and there. I do hate crows but laughed at one above my head. We shared a plate of meze -- tapenade and humuus on salty crisps. I had clams and chorizo in a spicy broth, sipped a glass of white wine and laughed.

It would seem that the zany atmosphere even changed what I looked like.