Bodhisattva

I'm all over the place. Perhaps. (condition) Filled with vitriol and judgement and sadness masked by bitter humor. I know this in parts (not part). It must be irritating to listen to someone compare a disabled person and her caregiver to a pandemic's dictates. To constantly draw parallels. Parallels. One line tilts at some point must tilt at some point in this madness we call living. Sophie knows everything about isolation and confinement. Her journey is not mine nor are there parallels. But tilt. Because she is my heart I can understand how deep. Fathoms. Unfathomable. Unfathom is not a word, but I am learning unlearning to do it because of her. When she was a baby and screamed for hours I rocked her in a brown and cream-checked chair from the life before her, chanting Breathing in I calm myself, breathing out I smile.  Tonglen. Breathe in all the world's pain and suffering and breathe out good. When I forget -- tilt and the unfathomable depth of her eyes.

Rest in Peace, Charlotte Figi

We are all bereft, gutted, filled with sorrow. Charlotte Figi, the daughter of Paige Figi, died yesterday of probable complications related to Covid-19. Charlotte was patient zero in the cannabis revolution, and Paige a mother, a friend, a mentor, a revolutionary, a life-saver and inspiration. All of our lives -- all of your lives -- has been changed by this young girl and her mother. That Charlotte should die of this cruel virus that seems to be just picking people off is bewildering and even surreal. In the epilepsy community, Charlotte's death is particularly tragic as so many of our hopes and dreams and certainly our gratitude and love is wrapped up in this child's soulful eyes and sweet smile. She is our child, too, and I think I speak for many when I say thank you to Paige and Greg and Matt and Max and Chase for sharing Charlotte with us.


Molta forza e coraggio to Charlotte's brave family. We will never forget your girl, the garden you planted, and the flowers that bloomed from it. We love you and hold you with our community -- Charlotte's web that you so beautifully spun and whose strands are stronger than loss and grief because they are made of love.

"Grief as Praise" on Who Lives Like This?!

Heather Barnes Jackson, Me and Allison Benavides

I hope ya'll will listen to today's podcast. We interview Heather Barnes Jackson, a mother, advocate and the CEO of Realm of Caring. She is one of the most beautiful women I've ever met -- brilliant, funny, warm and earthy. She's quite literally helped tens of thousands of children and young people -- even saved their lives.

I've been thinking so much of what she describes as a "sick obsession." It's suffering and grief, but her insight is not just provocative but deeply healing, at least to me. As I listen to the podcast a couple of weeks after we originally recorded it, I'm struck, again, by the astounding people I've met over the last twenty-four years. Grief as praise, indeed.

Listen to the podcast here or anywhere you listen to podcasts. You can also read the accompanying blog post on our website: www.wholiveslikethispodcast.com

Mercy Now

Mark Bradford's "150 Portrait Tone"
Los Angeles County Museum of Art

I do not pray except for mercy. I may sit on the side of Sophie's bed in the early hours of the morning, pulled there by a groan and thrashing legs and arms, and I'll curse in my mind even as I stroke her tiny face my grimace an extension of hers and I will ask for mercy. Mercy. I do not pray except for mercy. There is such a thing, isn't there? Not the prayer but the mercy. Today another ten children were gunned down by another child. Mercy. My own son rages at the world says hopeless but his strong body intelligence the way he moves belies the cynicism. Be merciful, I think. This morning two small yellow-breasted birds splashed in the fountain just outside my bedroom door. Yet, the earth is betrayed, buckling, relentless. I sip coffee. Sophie slept. Even so, I have a past, you know, where or is it when I did terrible things. I have a past, you know, when I was terribly hurt. I am sorry. Yes. I am, too. What, I think, might have happened if I hadn't done that? Yet still, mercy. I have held Sophie in my arms, a pieta without prayer.  The line of those who have hurt her, even indirectly. We must show mercy. What might have happened had Sophie been given cannabis medicine in those early days? Would I have crouched in the shower and wept, lay my forehead on the tile in thanksgiving for mercy? I have not prayed except for mercy. Those children dead, this earth, that person, that love betrayed and having been betrayed, my son, my son, my daughter. Mercy. There is such a thing, isn't there? Not the prayer but the mercy.

Shedding Tears

I've decided to be fully present during each seizure and shed tears, at least afterward. The word shed.  Dutch and Germanic, Old English root: to separate out, to scatter, to divide. I remember watching a scene in a movie -- maybe Zorba the Greek -- where a bunch of women are wailing in the streets about something or another. I can't find the scene, though, so I might have made it up or perhaps reached into my cellular wellspring where the Middle Eastern and southern Italian histrionics lie embedded. The word histrionic. The dictionary states that its origin is the 17th century, and I imagine some Germanic guy or Anglo-Saxon with the whitest of skin took the Latin root for drama and acting, twisted it into something unfavorable, applied it to women, in particular.

I have a friend whose adult son is schizophrenic. She's done things like cleaned his shit from the walls of his apartment. She and I recently sat in a car outside her house and discussed how we imagined ourselves screaming in the streets with other mothers, other women. Tearing at our hair and wailing, rending our garments.

How fitting to shed --  to empty oneself that way.

Watching a person twist and jerk and grimace over and over, in minutes and then years, helpless to do anything but watch and abide in the moment -- surely this calls for tears afterward as much as efficiency or quiet?

Are there enough tears?

There's nothing to be thankful for with seizures.

I don't believe in prayer and would as soon as stand on a pew and wail then beg.

There's gratitude, though, in tears.

I bought some daffodils the other day. The buds were tight, the stalks like paper. I stuck them in water and watched them unfold into yellow.

The Full Catastrophe

Open Heart Flame

Things were all mixed up yesterday. I was showered with birthday love yet had to say good-bye to my beloved son Henry who is beginning his freshman year in college. The busy weekend came to a close at a beautiful morning mass for several thousand freshmen students and parents in the school's gym, called The Kennel because the school's mascot is the bulldog. It's also Jesuit, not the bulldog, but the school.  I watched the line of priests file in behind the huge gold cross and felt a familiar annoyance that it's only men -- ok, more than annoyance --  yet I wondered why it's so difficult to shed Catholicism, its liturgy moving like syrup through my head, the words spilling out of my mouth from some dark recess. I've often wished there were a sacrament of Egress -- some formal marking of leaving the Church behind. I nearly fainted at one point during the mass. I was thinking too hard, I think (!), like I did as a girl in church on Sunday. I think it's from boredom -- the lassitude, the combination of priest drone, empty gesture and saint-fantasy. Or maybe it was my throbbing elbow, smashed accidentally by the seat when I stood up. The pain was obliterating. I saw spots in front of my eyes, felt a wave of nausea, told Henry I needed to sit while everyone else stood. I put my head in my hands, bent over my legs, closed my eyes. By the time the priest asked the students to stand in the aisles and us to lift our hands over them in a blessing, I was openly crying. 

I am overwhelmed.

It was always easy with Henry. All of it. It wasn't hard, ever, and I mean that, really. How lucky I was to raise him from shining baby and boy to young manhood. It's so hard to let him go.

My friend Doug said that missing someone is a good kind of pain, that it means the flame of love is burning, like a pilot light. We want that love on, a love that our sons and daughters will spread to new friends, new places and new experiences. 

To be open-hearted, to be free with tears and joy, is everything. 

I have everything.

Heartbreak Open

It's heartbreak that those of us who experience it rarely share, such is the pain. Our children with severe intellectual disabilities, while valued as part of their family and school communities (and often not even there) have few independent friendships and little to no opportunities for social interaction other than the times arranged with -- yes -- those people who are actually paid to be companions or to put on social programs and acitivities. There's a scene in the Caregifted documentary Undersung in which I ne of the caregivers, Ramona, says very quietly that she is resigned to always having to pay someone to interact with her autistic son. It's a moment in the film where I sort of stop and sit still, paralyzed yet intensely aware that I am really only made of bits and pieces, shattered.

Despite loving aides at school, a kick-ass teacher and group of students she has practically grown up with, Sophie has few friends outside of her family and the two women who have helped care for her over the years. Ok. She has none. I have largely given up on outside people, including friends and family, to take that kind of interest in her. Although bitterness occasionally rears up, I'm more inclined to understanding and accepting it, choosing to confide in my peers, other mothers and fathers who are long-time caregivers. I am pretty much resigned, like Ramona, to arrange and pay for Sophie to have companionship. She will be aging out of the school system this spring, and the nagging worry of what might come next is just that -- a nagging worry. I foresee a huge transition in my mind and soul, even if I do find a good day program for Sophie. It will be the next great twisted milestone in a long line of them, the chain of them, the tail of the dragon.

Swish

We live, I think,  in what I sense is the break of the heart, not out of choice but of necessity, and it's not the disability that we mourn, the differences of our children. They are complete and whole even in their brokenness. If disability is a construct, our heartbreak is for those who would persist in looking away, whether it's the culture or the persons within it -- you and you and me -- leaving our children isolated, looked on at best with kindness and at worst not at all.

During these tumultuous times, when it seems that the whole sane world is struggling to WOKE, I've found a new friend, a woman who is intent on her own young daughters being woke as well. I've known her for a long time but really only as an acquaintance, so when she asked me whether her daughters could possibly spend time with Sophie, I confess I rolled my eyes inwardly. I might have put bitterness aside, but I can still be cynical, and whether that's a defense mechanism or not, it's hard and well-earned. I did not expect anything to come of it. My friend's girls are eleven and fifteen years old, committed ballerinas and breathtakingly beautiful. They have clear eyes and when they first came over, they spoke openly to me, asking questions and observing Sophie in her room. They were sort of unbelieveably magnificent, if I can say that.

I'll say this, too: They have been spending time with Sophie, have come to our house on Sunday morning and spent time with her.

Yesterday, Sophie had a big seizure in the early hours before dawn. She had an amazing run of more than a month without any to speak of, so I guess it was time. Resignation. Acceptance. The girls had planned to come over, but I texted my new friend to tell her that it might not be a good time. This new friend is brash and funny and persistent, to say the least. She literally insisted that her daughter could sit with Sophie as she rested and give me a break. I took a breath and gave in. Sircey came over, walked into Sophie's room where she lay recovering from the seizure, went to the bookshelf and pulled down James and the Giant Peach. She sat down on the floor next to the bed and began reading to her. She read more than fourteen chapters in a quiet voice, adapted to Sophie sitting up by sitting next to her and continued to read.

 I only poked my head in every few minutes to check on them and eventually stepped into the shower where I cried a bit, my tears diluted by the water streaming down my face and over my breasts, under which my heart with its scars, that break where we live, became a channel for them, a pathway down, a pool, an ocean under my feet.

It's NaCaGiMo, Folks! Day Seven

I know I've been snippy and snappy and sarcastic about National Family Caregiver Month, and that's mainly because I've developed what I think is a healthy coping mechanism. Being snippy and snappy and sarcastic is a kind of coping vice, I guess, for some of us who don't drink or do drugs or otherwise act destructively when under a whole lot of stress. And maybe it's not much of a vice -- I think that anger and frustration can also be used to fuel change and increase awareness, break down barriers and make the very real problems that we caregivers deal with on a daily basis somewhat more relevant and resonant for others.

Today, though, I'm going to pause and pay homage to my many caregiver friends who've lost their children. Part of the caregiving deal is that many of us think about and experience death all the time. If we're not worried that our children will die before us, we're worried that we'll die before them. At best, this is a messed up situation, an impossible conundrum, but it gives one incredible perspective about living each day and even each moment with an almost reckless gratitude. Over the twenty-one years that I've been a mother and caregiver, I have known many, many children who have died. They were Sophie's friends in preschool and elementary and middle school. They are the children of a few of my best friends. They are the children of the beautiful people I've met online, blogging, and in the larger medical cannabis world. Just last week, another child died, the son of a woman I met at an epilepsy conference who is part of the powerful community of cannabis professionals in Colorado. She and I were on a panel with a bunch of obdurate professionals -- she as a nurse and parent of a child using cannabis and me as a parent of a child using cannabis. I was devastated to hear of the death of her beautiful son Reggie.

Last night I had the privilege of attending the 6th Annual Candle Lighting to Remember, a beautiful event down in Laguna Beach. We each had a paper lantern that we decorated with markers and stickers, sitting at picnic tables on a bluff overlooking the Pacific Ocean. I made one for Reggie, specifically, but my intention for the night was to remember all the children I have known in my family caregiver world who have died.

There must have been at least fifty people who walked down a steep beach path, placed their lanterns in the sand and then dropped a tiny candle inside. As the sun went down in a glorious display of pinks and purples and oranges, the lanterns grew brighter and brighter, undulating out in this beautiful serpentine way across the beach.

When the sun had sunk into the ocean, we collected our lanterns and extinguished the lights and walked back up the path to the bluff above.

May you be happy
May you be well
May you be peaceful and at ease

-- Metta, or lovingkindness

Identity Hyperbole

I just said good-bye to my heart brothers. Henry and Oliver are off to Switzerland with their father, and while I'm excited for them I also feel -- well -- unhinged. I cried a bit after they left, certain that my life means nearly nothing when they're not around. I wondered what the hell I'd do when they leave for real one day, and I cried a bit harder for my lost identity. I wish I could say this was mostly dramatics or even hyperbole, except that it's sort of, kind of not. I mean, it's the truth. Who am I without these people? Sophie and I sat in the very quiet kitchen, and I fed her some beans and rice. I ate some whole grain crackers that I've recently become addicted to, spread with a thick layer of butter. I might have eaten 1/3rd of a stick of butter, but maybe that's hyperbole. I also ate a tomato from my garden like an apple and sprinkled crazy salt over it before each bite. I sipped some red wine that's been sitting on my counter since my last book salon. I'm not a big drinker, but I figure a tiny buzz might cut the angst a bit. In less than 24 hours, I went from feeling nearly orgasmic with joy and freedom (not hyperbole) after a sunset swim in the Pacific to feeling bereft and abandoned (ok, hyperbole).

Here are some pictures from the weekend.

I was in San Diego County with Henry, attending a lacrosse tournament. When he took off with his buddies for the whole day yesterday, I lay on the hotel bed wondering what the hell I was going to do with myself, but eventually I got up and walked miles, went shopping and bought myself a funky outfit and then went down to the beach in my bathing suit and actually went into the water and swam for at least a half an hour. I submerged myself -- dove into waves and paddled around -- and then dried off, sat on a towel and watched the sun set.

Here I am coming out of the water:

Oops.

Sorry. That was another woman. That woman lives in the Caribbean Ocean and walks out of it occasionally. She has no idea what's coming around the corner. Tell her to turn around and dive back in!

Here I am:

And here's the sun setting over the glorious Pacific ocean:

Feeling Stretched and Mature (and a CBD Update)

La Jolla, CA 1996

The work of the mature person is to carry grief in one hand and gratitude in the other and to be stretched large by them.

from The Geography of Sorrow: Francis Weller on Navigating Our Losses.*

I finally picked up Sophie's emergency medication from the drugstore today, almost five days after I requested the prescription. I was going to complain to The Earnest Pharmacist about the colossal communication breakdown but decided that I didn't have the energy for it. I'm generally a dog with a bone in these matters, but I also pick my fights with exquisite precision. The drugstore is within walking distance, and the convenience of it weighs more than perpetuating the conflict. I noticed -- with rue -- that my co-pay was only $15 and wondered if I was getting the $.99 Store version. I recalled a time nearly a decade ago when I'd had to purchase it on a weekend, couldn't get insurance approval (back in the days when I stockpiled rectal valium for crazy parties I threw), and paid $1400 for two doses. Apparently, Diastat is a relative bargain these days, so any of you Rectal Valium Party Lovers should stock up. I'll put it on the top shelf of the medicine cabinet in the bathroom where it'll hopefully sit for a few years before expiring.

Sophie appears to have come out the other side of this drastic cut in Vimpat. She's been smiling again, her palms are dry (they get clammy and cold when she has multiple seizures) and aside from some weakness in her right leg (attributed to seizures as well and perhaps Todd's Paresis), we might take another bit away this weekend.

I can say today, though, that since beginning CBD in December of 2013, she has about 90% fewer tonic seizures, 100% fewer myoclonic clusters, takes 65% less Onfi (the benzo) and nearly 75% less Vimpat.

My grief is in the blurring of the boundary between past and present, as is my gratitude. I am stretched large.


*Thanks to my friend Kari for posting this quote on Facebook and inspiring me.

Girding My Loins

Edwardian woman boxer found on the internets

I've got to gird my loins and get to The Latest Insurance Snafu. You might remember that Sophie had some routine bloodwork done a few months ago, not for the hell of it but per doctor's orders, and the insurance company only paid an infinitesimal amount despite it being an in-network provider. When I inquired, The Poor Person Who Has to Work the Phone at an Insurance Company did her clicking around and told me that the labwork was covered but venipuncture is not covered. I already wrote about this, I believe, so I won't belabor the point. I put it aside because, if you remember another post I wrote, my coping mechanism is to Do Only One Thing At A Time. Mulling or mewling or moping (not musing) about why poking Sophie's vein with a needle is not covered, although the actual blood analysis is covered was just too much that day for my tiny little mother mind,™ not to mention actually addressing the problem full-on which means calling the provider, telling her to correct the wrong diagnosis code or ask for a more specific diagnosis, use the numbers V72.6 instead of 82036, etc. etc. etc.  It's time to gird my loins and do it.

I've got some figurative or mental loin-girding going on as well these days as the end of the year at Sophie's public school wraps up. This is the third year that Sophie is considered a senior, I think, or someone has neglected to remove her from the school's graduating class rolls, so I'm subject to a daily and sometimes thrice-daily robo call letting me in on all the fun goings-on for graduates. To be fair, because of the public education laws, Sophie is allowed to stay in school until she's 22 years old, and my gratitude is nothing short of  all holds barred. What comes next will call for more than just the girding of the loins, but that's a story for -- well -- another day. In these parts, we take living in the present to the extreme.

Anyhoo.

Last night, the phone rang, and Oliver picked it up and put it directly on speaker so we could laugh ruefully about the message. This one gave a stern warning that all seniors were to clean out their lockers by no later than 10:00 this morning and that fun festivities were in order later in the day to honor the outgoing class. So far, Sophie should have picked up her cap and gown, cleaned out her locker, gathered with her classmates for a celebration and even checked out the ROTC recruiters in the parking lot with all their cheerful guidance toward a life of bravery, courage and sacrifice. Tonight, I told Oliver to please hang up the phone I don't want to hear it anymore. Oliver asked me whether it made me sad, and I said, yes sometimes it makes me really sad. We both agreed that it's weird to think of Sophie being almost the same age I was when I graduated from college this exact time of year.

Who knew that space cadet grad with thoughts of medieval French literature, modern poetry and a summer ahead of perhaps teaching English to Chinese students in Taiwan or staying with the love of her life in Chapel Hill was going to have to gird her proverbial loins to just make and listen to telephone calls in about thirty years?

A Stone, Rounded at the Corners, Still Hard

I put her old ugly pink helmet on yesterday afternoon and let Sophie walk around my room while I tidied it up. Despite her ability to walk and her love for doing so, she has next to no individual freedom to do it, to do what she most loves. Between possible seizures and the lack of cognitive ability to recognize danger or navigate, she just isn't safe except in her own tiny room that is padded or on a vast, softer surface like the beach or a grassy field.

This is one of those things that I absolutely do not, have not and cannot get used to and that needles me and that hurts my heart. Literally. I know that the more we push away our uncomfortable feelings, the stronger they are, and perhaps this is why after nineteen years I am no closer to accepting the fact that we can't let Sophie roam around where and when she desires. I push it away, I push it away and it sits there, hard and sore to the touch, perhaps emblematic of all the grief I carry. I am resigned to the fact that I will probably always have to pay someone to take her out for a walk. That's the stone, rounded at the corners, but still hard.

The Fish, The Clouds, The Slipstream

My friends are seeing their first born children graduate from high school this month. They are preparing to take these children to college sometime this summer, and they are, to a one, filled with trepidation, with the bittersweet grief and certainty that in some respects, it's the end. You know where this is going. For a moment this morning, as my writing percolated in my head, as it does, the wonderful phrase what fresh hell is this? flitted through, a cloud, a fish, the slipstream. We are going to a graduation party this afternoon for the oldest child of one of my dearest friends. Sophie would have graduated from high school last May, so this May is the year that the younger children of my friends pass her by. Again. Despite the many years and all the experience under the proverbial belt, despite the strength, thickened even under the armor imposed upon me by circumstance, the return of pain, the pinprick of it (the fish, the clouds, the slipstream) takes my breath away. If I hold it, it grows, so I give it a nod and admire its shimmer, watch it go.

The Entrepreneur, Halloween, Christmas and The House of Crazy

If I told you the past week chez House of Crazy was crazy, it would be an understatement. Raymond Chandler and Santa Anas aside, between the Seizing Marijuana Chronicles and The Teenager and The Dyslexic Entrepreneur, I've been hard put to remain not just calm but even somewhat collected. I won't even go into The Husband. I've been wearing sunglasses all week to disguise my tears and have walked around the house whimpering when they're all at school. I've told you over and over that my Italian grandmother used to do so all day, whimper, sigh and mutter under her breath pray that I die, pray that I die. Last night I made a valiant and last ditch effort to cheer the Dyslexic Entrepreneur who had finished a horrific week of school that included about 5,321,789 emails back and forth to The Powers That Be at the school and the passing, Santa Ana-induced thought of homeschooling. He had just climbed into the car after baseball practice and begun another historic rant of negativity, how I suck at baseball and just about everything and how I'm just going to give it all up and be a giant loser, I'm really not supposed to be in this world, and while my eyes glazed over and my ears dripped blood, the tiny thought entered my mind, the valiant thought that I then actually voiced:

Why don't we go to Cost Plus World Market and get you some stuff for your lemonade stand?

If you're familiar with Los Angeles on Friday nights, and particularly with our local outdoor shopping mall called The Grove on Friday nights, you'd know just how outrageous this suggestion was -- how it was more the last ditch effort of a dying woman (pray that I die, pray that I die) than of a reasonable or even good enough mother. We went. We nearly killed ourselves wrestling a giant Exxon Valdeez SUV for a parking spot, and we walked the Christmas decorated clogged aisles (pray that I die, pray that I die) until The Dyslexic Entrepreneur decided that he'd use some of his earnings from last week's lemonade stand to buy a cotton candy maker for this week's stand. And given that I was dying, had contemplated buying some admittedly adorable silver-flecked Santa ornaments and wouldn't be spending the money myself, since the Dyslexic Entrepreneur has actually made about three times as much as it cost,  I said yes.

What's really cool about the cotton candy maker is that you can throw candies in the top to flavor the sugar.In fact, that photo of The Dyslexic Entrepreneur was taken at about 10:00 this morning, and his product became his breakfast. In addition, we're going to start decorating for Christmas early this year at The House of Crazy by putting silver flecks on the pumpkins and draping spider-webs over the life-sized Santa Claus that's sitting on my porch, a "gift" from my parents. The weird thing is that I'm no longer praying to die but actually getting excited.

Reader, what are you doing?