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.

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.

How Not to Figure Things Out

dedicated to Mary, Tanya, Heather and my Mom

It occurred to me the other day that I'm not going to figure things out. I probably use that expression many times a day in various forms -- I can't figure it out, You'll figure it out, Figure it out! I need to figure it out, Just figure it out! -- and certainly popular culture is filled with tips on how to do it or on how other people have done it. I can figure out a math problem or how to work my new phone or what to do about Oliver's schooling or how to help Henry navigate high school, but there's no figuring out the really big life things. I'm not saying that things just happen without effort and thought, but it's a rare big life thing that is figured out in the sense that one comes to an answer in a direct way. Does this make sense? Because there's a lot that is unbloggable now in my life, I might sound vague, but what I can draw an analogy to is my early years with Sophie, right after she was diagnosed and probably for the next ten years or so when I was always trying to figure things out. This meant many active hours of brain anguish, of being on all the time, in the event I'd miss something. When I say that, I mean it quite literally. I spent conscious and unconscious hours worried that if I didn't do something or think something or research something or talk to someone about something, I'd miss the chance to fix Sophie. In other words, I would miss figuring things out. I remember with an almost PTSD-like intensity the cover of a Time Magazine article about child development and the brain, how at age three, a window shut on language. I believe that has been debunked since then as we've discovered the brain's capacity for amazing feats of regeneration, but the sound of that window slamming haunted me for years. I spent a lot of time trying to figure things out before that window slammed and well afterward.

When I sat down to write this morning, I looked at the collection you see in the photo and realized that I'd made a sort of shrine, and that gazing often blankly at these things helps me to center myself and channel all the energies I have in me and outside of me to create and to write. There's a card there at the back that a blogger friend who's become one of my best friends sent me. There's a little jade statue of the Buddha, and a tiny tin of holy dirt from a shrine in New Mexico that my friend Tanya brought me. There's a bit of driftwood from the beach in Victoria where I spent a week last year, a week given to me by Heather McHugh and her organization Caregifted. There's a little house behind it with the words A house without books is like a room without windows. These objects sit on a box of postcards from Penguin that replicate one hundred book covers, and in front is a glass coaster that my mother gave me years ago with a sweet saying. I always feel joy and content when I write, to tell you the truth, and that's true for both online and off-line writing, but particularly so when I sit in a sort of reverence and allow it to just happen. I hesitate to use the word channeling for all its over-used weight, but I'm not sure what else to call the release of fingers on keys, the rush of language and words falling into place. I'm not figuring things out, though, and it's not about me.

I get a lot of emails and telephone calls from people with little children who are new on the path of disability or epilepsy. I'm always struck by their bravery and by their sense of urgency as much as by their anguish. I recognize all of their emotions because I've had them or continue to have them. When I cast my memory back to my own early days with Sophie, I remember the visceral details of trying to figure things out, but I don't remember much of who I was or how it happened, or even how I did it. I want to say, sometimes, you won't figure things out, but even twenty years later, I don't have the wisdom -- or presumption -- to do so.

If I could, I'd tell them how not to figure things out, but I haven't figured that out either, other than to treat with reverence and love this place inside of me that persists in opening to possibility.

The Landlocked Life

Weeki Wachi Springs

This morning I met Moye at a neighborhood pastry place for a belated birthday breakfast. She stuck a candle in the bunch of hair that I had pinned to the top of my head, and then we lit it and I burst into flames and disappeared. Just kidding. Well, that wasn't funny, really. We actually sat down and drank delicious coffee, ate this incredible concoction of bread, exotic sauteed mushrooms and eggs and shared some divine confection -- a cannelle, I think it was, all crispy caramelized on the outside and eggy soft in the center. We talked about our children and shared some memories of our high school years (we grew up together in Atlanta!) and we laughed together like we always do. She gave me a beautiful bracelet/necklace that I promptly wrapped around my wrist and a wonderful little book of poetry called Poems of the American South from the Everyman's Library Pocket Poets series. She wrote a beautiful inscription inside in her inimitable gorgeous handwriting, drawing my attention to the poems inside that include mermaids, Tar Heels and tender mercies. Thank you, Moye, for your years of friendship, for your sense of humor, your support, your beauty and your inspired art.


September 11th is always a sombre day -- isn't it? Our minds inevitably go back to where we were and how we heard and how we led our lives in those days following. There's a tyranny to sorrow, isn't there? What we are almost required to feel or remember? I'm always struck, on this day, by the strange paradox of the Never Forget communal imperative juxtaposed with the get over it mentality we place on individual loss. It's something I think about, particularly in regard to my friends who've lost a child or suffered some other big loss. There's a tyranny to sorrow, isn't there -- or at least a manufactured order to it.

I was going to post a poem on this somber day of Adam Zagajewski's -- a poem that I've posted before that I think is entirely appropriate, but instead I'll give you the link and post the mermaid poem from the book that Moye gave me.

It's all we can do, really.

Try to Praise the Mutilated World by Adam Zagajewski



My First Mermaid

I
In Florida, where these things happen,
we stopped at the last roadside attraction.

In a small theater decorated with mold,
behind a curtain sagging like seaweed,

a wall of glass held back a wall of water.
And there, in the springs, a woman in a bikini top

and Lycra fish tail held an air hose to her lips
like a microphone. What was she waiting for?

Into the great open bowl of the springs
a few fish drifted. They looked at the two of us.

They shook their heads and their bodies rippled.
Air bubbles shimmered in the filtered sun,

each a silver O racing to the surface to break.
We'd missed the day an unscripted underwater blimp

of a manatee wobbled into view. The gray, whiskered lard
of a sea cow or the young woman who sang --

lip-synched, rather -- some forgettable song,
her lipstick waterproof: which was the real mermaid?

II.
Given the weight of the water, nothing happens fast
to a mermaid, whether it's love or loss.

Not like the landlocked life, I wanted to warn her.
But here came a prince in street clothes,

trying to think thoughts that were heavy enough
to make himself sink to her level. His shirt ballooned,

a man turned not to a merman but a manatee.
Yet, in the small eternity it took for him

to grasp her greasy flipper, for her to find
his more awkward human ankle, and then

for them to turn, head over each other's heels --
a ring rolling away, too beautiful to catch --

they lived happily ever after.
Until one of them had to stop for breath.

Debora Greger (1949-)

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.