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February 29

An extra day—


Like the painting's fifth cow,
who looks out directly,
straight toward you,
from inside her black and white spots.

An extra day—

Accidental, surely:
the made calendar stumbling over the real
as a drunk trips over the threshold
too low to see.

An extra day—

With a second cup of black coffee.
A friendly but businesslike phone call.
A mailed-back package.
Some extra work, but not too much—
just one day's worth, exactly.

An extra day—

Extraordinarily like any other.
And still
there is some generosity to it,
like a letter re-readable after its writer has died.

Jane Hirshfield, from The Beauty
via Poem-a-Day

Memorial for Dr. Viola Frymann, D.O.

I drove down to La Jolla early this morning to attend Dr. Frymann's memorial service. I wrote a little about Dr. Frymann's life and death a few weeks ago, and I had hoped to take the children with me, but it was difficult to rouse the boys on a Saturday morning, and I wasn't quite up to the task of taking Sophie alone, so I headed down there by myself.

Even though I was running late to make the 11:00 service, I pulled over at the overlook near Camp Pendleton because I always pulled over there back in the days when I drove down twice a week with a very young Sophie in the back of the car. We'd get out and stretch our legs and look over the wide expanse of blue. I wanted to make a ritual of my journey, and today was particularly beautiful -- the ocean a soft blue that lightened and deepened and melted into the sky. The gulls wheeled around catching the currents, and I stood and looked out over the Pacific.

When I got to the church, the service had been going on for at least a half an hour, but the Episcopal minister was giving the homily, and it only took a few minutes before I began to cry softly in the pew. Dr. Frymann was described as a woman of steely intellect and discipline who, after injuring her ankle and giving up her dream to be a ballerina, gave her entire life over to improving the lives of children through osteopathic medicine, particularly those whom other physicians had given up or declared impossible to treat. The minister aptly said that when she looked at you, it was as if her eyes were x-rays, and she could penetrate to your soul. Yes. That was my experience. I realized quite suddenly that it was almost exactly twenty years to the day since I had first brought Sophie to see Dr. Frymann, when I travelled from my home in New York City in February of 1995 and walked through the white gate of the little yellow house that sat on the bluff of La Jolla Cove and handed my sick baby over to her.

Raoul, the pianist that accompanied Dr. Frymann's treatments of Sophie and many other children back then, was there today, playing Chopin and Beethoven and Bach.  I also saw many of the people that worked at the Osteopathic Center for Children, a couple of familiar faces belonging to other mothers,  and a few of the osteopaths that were family to us all those years ago. One of them, Dr. Morelli, remembered me, and when I gave her a hug she told me Sophie taught me about angels. She always looked so intently up and around, like she saw them. I thanked her for that and for literally picking me up off the floor where I sat crying one day, overcome by fatigue and worry.

After the service, we proceeded outside to the Memorial Lawn where Dr. Frymann's ashes were interred. The minister crouched down over a small square cut out of the ground and gently shook out the ashes of this dear and powerful woman, blessing and chanting over them. I saw them swirl up and around from the small impression in the earth, the fragments blown a bit by that gentle breeze that seduced me into moving here so many years ago.

How grateful I am to have known her and to have had her hands touch and treat and heal my three children. When invited, I took the small shovel and gently placed some dirt on top of her ashes, closed my eyes and heard her voice over the gulls. I still heard her voice when I left the reception afterward and drove down the drive below the yellow cottage that is now a busy restaurant. I got out of the car, my back to the motel where I'd lived with Sophie and stood at the bluff and watched the waves crashing onto the rocks.

I know that Dr. Frymann rests in peace after a life well lived. She was one of the most influential people in my life, steadying me on this path. Her remains are buried under the grass in front of the church she loved, a bit of her blowing over the majestic Pacific. She'll live in me, in Sophie and Henry and Oliver and countless other people and children, forever and ever. Amen.

Other posts about Dr. Frymann:

Dr. Viola Frymann (1921-2016) 

How We Do It: Part XXXVII of a Series:Fragment

Full-Assed Thoughts and Gratitude

Enough ranting and raving. Whew. It's been a weird few days, no? I told my good friend Tanya that I've got a million things going, but I don't feel like I'm doing any of them well. I'm half-assed, I told Tanya. I wish that expression could be literal as well as figurative, but my exercising is half-assed as well.

Today, though. Today. I kept Sophie home from school because she looked exhausted. She's been wakeful in the night, and this morning I found her stretched out on the floor of her room sleeping so soundly that even as I lifted her back into her bed and covered her up, she stayed asleep. I was able to work most of the morning at my New Job while she slept into the afternoon. I opened all the doors and windows and let the sun shine inside. Glorious southern California winter. In the late afternoon, I began making dough for cinnamon-raisin bread. It was just about the most perfect dough I've ever made, white and soft and satiny and flecked with golden raisins. I did what's called a business letter fold and put it into a ceramic bowl, brushed some oil over it, covered it with plastic wrap and put it inside the fridge. It can stay there up to 24 hours, so sometime tomorrow I'll pull it out and shape it into loaves with a cinnamon swirl. Working with this dough made me feel whole and full-assed (what I am quite literally, too), and I wonder why it's been so long since I've done any baking. A neighbor came over at the point where the dough was coming together in the mixing bowl, and when I exclaimed over it, she claimed that she just never got into baking. She's an incredibly good cook, but she doesn't like measuring. I think people either like or don't like baking, and they generally have an intuitive feel for doughs and batters or they don't. I have always been a baker -- since I was a very young girl, and pretty much everything I've ever tried (bread, cake, pie dough, French pastry) comes out pretty decent. I'm grateful for that.

I'm grateful, too, for the sun and the orchid and the pink sparkly ornament from my childhood that hangs from the chandelier. I'm grateful for my friend Tanya for joining me in half-assery and for my friend Debra with whom I spent last evening. We watched a beautiful documentary about the photographer Sebastio Salgado called Salt of the Earth.* It made me glad to be alive right now on this planet, today. I urge you to find it and watch it, be transported out of this ugly old world into this beautiful world.





*Here's the link for the trailer.

Fresh Hell

Useless Bay, Whidbey Island
June 2015

Oh dear lord. Did ya'll hear that Lands End has "apologized" for featuring Gloria Steinem in its most recent catalog? Evidently some influential customers, namely the Missouri Catholic school system, pulled their support (they buy school uniforms from Lands End) from the company because they disagree with Gloria's stance on women's reproductive rights or something to that end. As my sister said on Facebook, The world's gone mad. I admit that when I got the catalog in the mail and saw Gloria Steinem posed in various conservative outfits, I thought it was weird and then kind of cool. I buy the bathing suits that make you look 100 pounds lighter, but this morning I went online and typed out a quick email to the company telling them how silly their apology was and that I'd never buy anything from them again. I guess you could say that makes me as silly as the Catholic Church, but so be it. Wearing a bathing suit that makes you look 100 pounds lighter because you're uncomfortable with your body size is really just as contrary to feminist ideals as anything else. Maybe I'll just go out in my backyard naked, build a little fire in the fire-pit and burn the catalog in protest. I might wait until there's an open house in the McMansion still going up behind me and kill the two birds of conservatism and commerce with one stone. I'm that powerful.

Limitless

It intrigues me of course just how many people in the United States will cheer for a man who is a worthless shit.

Stephen Kuusisto, via Planet of the Blind

I think a lot of us are trying to figure out what's going on. Unlike years past when you didn't like a presidential candidate, you could make jokes about moving from the country but know deep down that you'd never do it. You had faith that the four-year cycle would be over quickly, that things would be righted, that you could grit your teeth and bear it, maybe even work in your local community to address issues that were important to you. 

This time it really seems different, and when I put my chin on my hand and stare blankly into the limitless blue sky of southern California, I think I know why. For me, it's different this time because it's the people themselves who are allowing this man to win primaries, who are cheering for him, waving signs and seemingly agreeing with his vile pronouncements and insults. It's the people themselves.

The thing is that I don't want to live in a country with people like this -- with so many people like this, with enough people like this that can propel this man toward receiving a nomination. I suppose I will have to, though, if it comes down to it. I don't know. If you're thinking about voting for this man, if you have any inclination to vote for or support this man, don't tell me. Don't tell me because I honestly don't want to talk to you ever again. Maybe you don't want to talk to me ever again, either, and that's fine. 

I refuse to be even the tiniest bit complicit in raising this man to any more powerful level than he already commands. 

The Separation of State and Family: Notes on HRC, Feminism, Disability and Family

I haven't written too much about politics on the old blog of late, except for the occasional jab or rant and disbelief over Republican insanity. The main reason for that is the whole thing gives me agita. I also have no idea what's going on with them (the Repubs) and haven't even ventured to ask members of my own family what they're thinking and whom they might be voting for as Republicans because -- well -- I don't want to know. Separation of family and state, if you will.

 I'm undecided about whom I will vote for in the primary, although I lean quite firmly toward Sanders. The reasons why are numerous -- they have to do with his positions on equality, on medical marijuana, on healthcare and education -- and while I understand people's reservations about Sanders' ability to do what he proposes, I'm more inclined to feel, at the gut level, that HRC stands for almost exactly what I'm not. In other words,  I'm not convinced that HRC is the right woman for the job, but if she should win the nomination I will of course vote for her because -- well -- really. 

This morning I opened Facebook and read something by my brilliant friend Jeneva Burroughs Stone that I wanted to share in total with you. Jeneva is a polished advocate for the disabled, the mother of a disabled young man, a poet and non-fiction writer that has numerous degrees and public policy experience. She writes, as always, with the perfect combination of righteousness, knowledge and passion. You should know that we as mothers of the severely disabled speak for our children as well. I think Jeneva speaks for Robert, here, and I will echo her voice for Sophie, too.

As Jeneva told me privately: "I can't have equality if Robert doesn't have equality."

Let's discuss:

Two articles crossed my desktop this morning that remind me why I cannot vote for Hillary Clinton in the Maryland primary. Both concern HRC and Melinda Gates' efforts to promote microfinance and close the time gap in unpaid labor--for third world women. Certainly, these efforts are admirable; however, only one of the articles pointed out the obvious--that while these efforts attempt to raise the ceiling for women, the Clinton welfare reform package, by shifting welfare to the states, removed the floor for American women. We are now "free" apparently, to fall as low as the states will let us.

I include myself because caregivers are also caught up in this mess of Medicaid waiver and state program block grant madness. Caregivers across the U.S. (mostly women who care for disabled and/or ill family members) face an ENORMOUS unpaid time gap. Many of us cannot work at the jobs for which we were trained, nor can most of us work full-time because we spend anywhere from 6 to 16 hours per day in unpaid caregiving activities.

Closing institutions is a great idea; however, no state offers 24 hour care at home, even for individuals who require 24 hour care, thus shifting unpaid labor mostly to female parents. When I talk about "caregiving," I'm not talking about "parenting." Those are two different things. It would be fabulous if I actually had more time to be Robert's parent, as opposed to his caregiver. Caregiving involves hands-on personal and medical care, as well as the reams of paperwork, emails, phone calls and accountability tasks required to coordinate the various programs that serve any person with disabilities. In addition, there are significant time burdens associated with accessing treatments, maintaining prescriptions, communicating with multiple physician offices, etc.

And I don't want a "program" that pays me to do this, unless that program is willing to compensate me at the wage I would earn for doing work for which I am trained, which is about 10 times minimum wage, and 3-4 times the current wage for a home health aide. Otherwise, we're looking at a wage gap on top of a time gap. And don't get me started on the fact that the caregiving support I DO have is primarily from female workers who are paid very little for skilled labor. Yes, I live in a state that's willing to supplement the pay of construction workers by an enormous amount, but won't pay a female LPN a reasonable wage. More comparisons--yes, I rent an office to get away from the house and get some work done. Is it a luxury? Maybe. But my rent is $440 per month. At a minimum cost of $50/hour, I would be able to purchase less than 30 additional minutes of nursing care per workweek day with the same funds.

HRC and Melinda Gates seem willfully ignorant of the problems working-class & poor women, as well as female caregivers face in terms of the unpaid labor gap. More "programs," especially at the state level, are not the solution. We don't want "help." We want equality. We want government and society to recognize a civil commitment to all citizens to reduce inequality. As one journalist pointed out--the Gates Foundation wants to pay for cell phones for women in third world countries, but who's paying for cell phones for poor women in this country? Who pays for long-term caregiving in this country? And who's paying for it in third world countries?

In my dreams

I

In my dreams they are always waving their hands and saying goodbye,

And they give me the stirrup cup and I smile as I drink,   

I am glad the journey is set, I am glad I am going,

I am glad, I am glad, that my friends don't know what I think.

from Stevie Smith's poem In My Dreams

There's an article making the rounds on the internets about caregiving. You can read it here. It has provoked discussion, some of it contentious. Initially, the article struck me as comforting. It resonated with my own experience in that while I find being a full-time caregiver to a disabled young adult wearing, it's also an honor. Why wearing? You know why. Why an honor? I think to give of oneself, over and over, to take care of someone who is entirely dependent, is a beautiful thing and calls upon our best selves, my best self. Not all of the time but most of the time. Other people are vehement in their hatred of caregiving, would change everything in the snap of a finger. I don't judge that.  In fact, I understand that. They're not my people, though. Others see caregiving as a gift from God and the whole mess as a blessing. They find meaning in chaos. I don't judge that. In fact, I understand that. They're not my people. Where am I going? 

After mulling it over and reading the comments and discussion, I felt more conflicted. 

Even equanimity is unbearable sometimes.

I was feeling resentful this morning. I was feeling resentful that I must give up, give way, miss out, miss, because of this whole shebang. I feel a divide, a chafing from those that live typical lives. Even my friends. I know it's useless to make them understand. Perhaps it is a boulder on my shoulder.  I am glad that they don't know what I think. Or maybe I'm delusional, and it's they who are waving good-bye to me.

Resentment is ugly and weighs far more than accommodation. 

That underground bar, though, connected by tunnels, whiskey shots and empathy. I am glad the journey is set. 

To Christy, to Jeneva, to Heather and Claire, to Andrea, to Elizabeth and Mary Lou and Meg and Molly, to Susan and Phil and Sharon and Alison and Ray and Cindy and Dave and Ken and Michael and Lisa and Sandra. To Katy and Jennifer and Erika and Carolyn and Erik. Michelle and Meg and Shannon and Jay. Liz and Heather and Brandi and Denise. Carrie. Terri, Jackie and Paula and Shannon, Rebecca and Tricia. Elizabeth and Olivia -- to all those I missed.

Dead of Winter, Day, Sun

That's the view out my back door on this late February afternoon, but it was certainly the bleak mid-winter about twelve hours ago when I was going on my sixth or so hour with Sophie awake, four o'clock in the morning, the darkest hours before dawn, the dark night of the soul. I didn't want to write about what had come before because -- well -- you know me and my southern Italian superstitions.

Sophie went nearly two weeks with only 1-2 seizures, and those were so mild I'm not sure I even remember them. 

One night, I thought I heard her seizing and jumped out of bed to run to her room and see her soundly sleeping. That was weird. But until yesterday, nada, nul, nothing. I was secretly exultant and outwardly cautious. She's taking a new strain of cannabis called ACDC and a tincture of THC at night. She's taking a larger dose as well. Her other medications are stable, as we don't change more than one thing at a time.

Anyhoo.

The moon is waxing full and my nighttime psycho caregiver self was waiting on the sidelines.

Oliver has a terrible virus and is laid low, so when Sophie started the old seizure drill yesterday, I sighed and figured she's getting it, too. Yesterday, she had some weird grand mals that were short but very vocal. She was in her room at one point, sitting on the floor, and I had just settled down to do some writing when I heard it -- a long, high-pitched groan. Henry and I reached her room simultaneously where we found her face down in a pile of toys, her right arm bent backward and banging against the padded closet door. It's like a horror show, folks, except that it's not. It's our life.

Henry quickly scooped her up and brought her to the bed where he gently lay her down and then disappeared into his room to probably continue stealing cars, while I sat with Sophie and just brushed the hair off her face and told her it was okay. We've done this a million million times, and there's just no getting used to it. Every single damn time.

The nighttime psycho caregiver self that was waiting on the sidelines, ran in to full play around 1:00 in the morning when it looked like Sophie was probably not going to sleep at all. I don't really know how to describe myself during those hours other than to emphasize that my disarray and delirium and despair are all mostly internal. I am prone to dark, dark imaginings of the end of times sort where I might think about the decades I've done this in incredible detail. I generally run through all the things I've done wrong and then my regrets and what ifs. I might entertain the thought that our lives are ruined. I allow thoughts of Baby Sophie to reemerge -- the hospital visits, the screaming, the Ketogenic Diet Days, the tromping through Manhattan for therapy days, the first PET scan and her suffering through countless blood draws and sticks. I am, of course, obsessed with everything that I've done wrong and how it will be like this forever and ever and ever. I think it's a sort of Continuous Stress Syndrome Disorder that strikes in the hours between 2:00 am and dawn.

Pray that I die, pray that I die, my Italian nonni used to mutter as she roamed our house on visits, her rosary beads clutched in her gnarled fingers that smelled of soap. I am her.

Would that I had an underground bar to visit, connected by tunnels, where those of us with these children might gather together, drink whiskey, tell dark jokes and look at paintings until the light comes.

The light comes. The darkness pulls in, is quite suddenly quenched. I feel chagrin but open my arms to morning, every single damn time. And the sky today, dear god, is so blue. And the sun. The sun!

How to Drive Your Teenaged Boy Crazy, Part 4,567,832*

My little sister showed me this fun emoji app that I've been using fairly indiscriminately of late. You basically create your own little avatar person that somewhat resembles you, and then you can use her in any number of situations to express yourself. Those of you who are hipsters will know what I'm talking about and think I'm the biggest dork, and those of you who are still caught somewhere in the last century or even millennium will humor me and even share in my joy. The thing is that apparently it's unseemly for a person like myself to use this app or any emojis at all. I was apprised of this by my youngest son, Oliver, who is beginning to look like a young man and who is evidently the arbiter of all things cool and uncool. He takes particular offense to my constant stream of emojis.

What he doesn't yet realize is the more he protests, the greater my glee in using them.

One of the greatest things about parenting teenagers, and especially boys, is the almost script-like intensity of the disdain to which you are subject. Occasionally, this can cause a flicker of pain when you remember that you have literally given them everything and love them to the point of distraction, but mostly it's amusing. I myself find it highly entertaining to make them writhe in discomfort and embarrassment by acting as ridiculous as possible which can be as simple as using too many emojis to communicate. Other methods include purposely saying the wrong number for that Jackie Robinson movie -- I began deliberately calling it 41 instead of 42 (or was it the other way around?) just to get the predictable MOM! What is your problem? 

I am, to them, hopelessly old and utterly uncool and must be constantly schooled and reminded of that.

Seriously, though -- what's up with texting your mother when you're both in the same house, and the house is literally the size of Bilbo Baggins' abode? I think you deserve to be mortified in return.

* This post was approved by all parties involved. I don't want ya'll think I'm INVADING MY CHILDREN'S PRIVACY.

Objects in the Mirror are Closer Than They Appear

I drove to Oxnard on Tuesday afternoon and spent a couple nights with a friend. I worked during the day, periodically stopping to chat with her, catching up on all we've been doing and experiencing since the last time we were together. I also slept in, meaning no 4:00 in the morning seizure checks and 6:00 in the morning wake-ups. I didn't have to dole out any medicine or break up any boy fights, either. I needed the break. We all need breaks, and some of us have few, if any. Mothering and particularly caregiving (I do both and know the distinction) can be overwhelming in their demands, and while it might be a cliche to emphasize how much my identity is wrapped into those demands, I do retain a thread of self, and that thread is pretty tough. At worst, it's attached to a balloon, but it doesn't break. It floats around, sometimes out of reach until I tug it. I am thinking these days that the thread needs to be more of a spool. This is a clumsy metaphor. I'm still thinking.

Objects in the mirror are closer than they appear. So is sanity. And insanity.

Mermaids and Flying Panthers

My friend Allison Ray Benevides and her husband Rob own this amazing tattoo place in San Diego called Flying Panther. I drove down on Saturday afternoon and into a world that I really have never experienced.

So much beautiful art on the walls and on the bodies of those working. Here's Sue:

Do you feel a little shaky? Do you have a presentiment?

Art by Rob Benevides

Do you remember what I was going to do by my 50th birthday?

That's me and Allison. I can assure you that I had already downed not one but two shots of straight vodka and thus look a bit bleary, but in real life, I swear my head isn't that big nor hers that small.

Why the vodka?

Whose arm is Sue gripping?

Take a break, Sue says, it hurts the most when you're close to the artery.

So, yes. I finally got my mermaid tattoo. That smile is a gritty one because it hurt a bit, but I did a whole lot of deep breathing, reminded myself of three childbirths and that time in ninth grade when I had a whole lot of packing in my nose after surgery and had to have it pulled out, and then -- to tell you the truth -- the pain felt sort of exhilarating.  I understand that there's a rushy kind of feeling while being tattooed and afterward, and it's distinct from the buzz of alcohol. I felt it.

Lest you think I've gone completely mad given the circumstances, I'll remind you that I'm 52 years old and have wanted to do this well before I was firmly middle-aged. So, I'm only partly a cliche. Still, it's a radical departure from the me that is me. Next thing you know, I'll be running in the Los Angeles marathon, swearing off pastries, vaping weed and avidly reading those books about the different shades of grey.

Well, maybe all of it except the marathon.

Happy Valentine's Day!

Reflections

I can't get enough of my new dining room set-up. A lot is changed around here. Oliver gave me that sitting Buddha with the pot that holds incense. I don't like incense, though, so it's empty which I think is more fitting. To be empty. Emptied. I remember being a little girl at church on Sunday and nearly fainting and certainly gagging when the priest walked down the aisle swinging that thing around with incense wafting out and around. I felt as if I were suffocating. Perhaps that's symbolic of my wrestling and then fleeing the Catholic Church. Perhaps it's just that I hate incense. When Oliver gave me the little Buddha incense holder, he included a box of cheap incense, and he lit it and immediately the house smelled like one of those stores that sells things for the spiritually materialistic. I'm actually prone to spiritual materialism -- I love mala beads around my neck and wrists, my red Buddha necklace, my turquoise Buddha ring, the Mother Mary cards, my Book of Changes, the Poet Tarot Cards. But no incense.



I took a shower tonight, and while the water beat down on me, I thought about jinxes. I thought about Sophie doing so well for the last couple of days, and maybe it'll only be the last couple of days, but it's been a good couple of days. Have we found the sweet spot with the strain (ACDC) and dosage ( a little higher)? Or is it something else? Is it the hot, dry weather and absence of pressure? Is it just -- well -- just? It occurred to me as I leaned my forehead against the tile and closed my eyes that despite the passage of nearly 21 years, I still know so very little about what makes my daughter's brain tick -- and tick too much. Despite those 21 years, and countless showers where I had very similar thoughts, where I crouched down and cried while the baby screamed in the bedroom, where I leant into the tile, exhausted, the tile perhaps like Roman stone, trod on, trod on, trod on, I still know so little. My sighs and tears and musings are always the same, an endless cycle, samsara. Suffocating. To be emptied. An empty vessel with room for gratitude.

An Espresso

We all need a pick-me-up.

An em dash.

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