It looked like a flower a jewel a prism a kaleidoscope of pink and red and green a mustard yellow. So beautiful it brought tears to my eyes. This part here, The Neurologist said, should be like a bush and it's more like a fern. The language of plants. I stood behind him, peering over his shoulder. My daughter's brain a bloom on a screen, his finger (or was it a pen) brushing along its tendrils, a fern not a bush. Space, too. Too much space there and there. How do I write this or do I not write this? Of course I will write this, me with the words, the ease of them. Call a flower tree and a tree flower (so I thought, lying on my back in the green grass of childhood) and what if we were just God's dream (God, not god, back then) and this, that, was a sort of dream. Calling a brain bush and bush fern. Standing there looking over his shoulder, my daughter's brain a bloom on the screen. The word atrophy. The feathering of a fern where there should be bush. The word cerebellum. I felt sick to my stomach for a moment, standing there, the dots in front of my eyes. Or was it faint? I need to sit down, I said, stumbled around the wheelchair and sat on the couch. I closed my eyes when he spun around on his chair. He's a nice man, a smart man, an honest man. Interesting that it was the tears that flustered him, not the brain a bloom on a screen. That's the way they are. I closed my eyes, heard him rummaging and then leave the room. Back in, he handed me a stack of paper towels, the brown rough ones from the bathroom. I thought that was funny. I really did. I thought it was funny. I'll write it all down, I thought, and then out. I'll build some kind of tension here on the page to mimic that in the room in the brain a bloom on the screen. Atrophy of the cerebellum. We'll need to compare it to an earlier scan (that I'll have to find, to root out from the bowels of some other hospital). The language of medicine mixed up with the language of business the language of poetry. And I a master of all of it nodding my head words blooms from my mouth. On the written report: indicative of epilepsy treatment. I always knew it. The word treatment. Just to be clear: Sophie's recent magnetic resonance imaging showed a couple of troublesome spots, including atrophy of the cerebellum. This could account for her gradual decline in motor abilities (walking, coordinating movement, balance, swallowing). The cause is uncertain -- too many drugs? long-term use of benzodiazepines? underlying metabolic disorder? genetic mutation? -- as always.
How do I write what comes next? I still have some tricks up my sleeve, The Neurologist said, and I laughed. I really did. I thought it was funny. Should they use phrases like this? Me with the chalked hands and the pirouette toes up on the high wire for decades. You as spectator your breath held.
This makes me weep. Oh Elizabeth.ReplyDelete
This is lovingly, horribly, beautiful.ReplyDelete
I keep trying to write what your words here mean to me. I keep failing. Just know that I am here, reading them, thinking of you, of Sophie. Wrapping you in love, from afar (if that's even possible. I'm hoping it is.)ReplyDelete
Mother fucker. My chest is tight. My eyes wet. And I am pissed. For Sophie. Damn it. Bullshit.ReplyDelete
No one on this earth could have written so tenderly, so beautifully about a moment in time which is unimaginable and unimaginably hard.ReplyDelete
I am so very sorry... once the damage has been done by all the medical tricks up the sleeve in the form of these Western Medicines that tend to do so much harm it pisses me off too. My Grandson and Son have had irreversible damage done from the 'Treatments' as Children that we were convinced were absolutely necessary for them to have highest function as the diagnosis of SMI was given. I'm glad both are now weaned off these horrible medications that have ravaged Young bodies and minds mercilessly. It brought tears to my eyes for you, for Sophie, for all of the Families having negative impact from 'Treatment'... what ever happened to "First do no harm" in the Medical Field, especially upon the most vulnerable and innocent of society... my chest is tight, I Hope in releasing the words of your Heartache in this Post it provided some relief. Virtual hugs to you both...ReplyDelete
As always, I have no words. No words at all. But my heart is huge and I’m holding space for you and Sophie.ReplyDelete
Elizabeth I am so sorry.ReplyDelete
Pierced but still the phoenix struggling through the ashes. I am so sorry, dear Elizabeth.ReplyDelete
Oh Sophie. Oh you. Love sorrow anger... Heaps of each for you both.ReplyDelete
Oh, Elizabeth. Goosebumps over your writing and tears too. I am so sorry. sending you love.ReplyDelete
Dearest Elizabeth and Sophie, I am so sorry.ReplyDelete
I remember very well the appointment where we went over Robert's MRI and saw the damage after so many years of not seeing any. As always, I am holding you in my thoughts. xoxoReplyDelete
Oh Elizabeth....breath held through this reading....breath held for you, and Sophie, and Valerie, etc.ReplyDelete
That you can write with such undying elegance about something so devastating, so wrong, damnit, takes my breath away. May the world be undone by your words.ReplyDelete
At least now you know there is something, it's not your imagination. Even if that something is awful, for me, it's better than not knowing.ReplyDelete
And I'm sorry. I'm trying out that tonglen you often write about. It's true, it does help and thank you. I will include you and Sophie in my practice tonight.
I feel like such a spectator to your/Sophie's story, but am always grateful for a peek inside, good days and bad days or weeks or months. As an OT, I have seen brains do far more than anyone who couldReplyDelete
interpret these scans thought the owners should be capable. There is more than this man, however smart and kind (the rough paper towels!) can know. (Were the towels a kind gesture or a "please, fix those tears!" moment, or both?) Writing it out helps me, too. Write on.
I want to wrap my arms around you. I’m quite sure he did not want to says the words- but he did. The fact he brought you those brown paper towels humanized him, for me. He cared. Love you. 💜ReplyDelete
Beautifully written. Thank you.ReplyDelete
Sending love. There is so much more to Sophie's life force than science and technology can ever see or interpret. Your loving photo, although involving technology as well, says so much more about her essence than any brain scan ever could. Thank you for writing from the painful experience of the deeper truth of the matter of the limits of medical experts and technology.ReplyDelete
"The truth was obscure, too profound and too pure. To live it you have to explode."
What am said. Yes. Loving you.ReplyDelete
Sending love to you and Sophie across the miles. Your writing is heartbreaking. I always tell myself it’s not real until I write it down. Writing it down is how I try to make sense of things that can never make sense. Thank you for sharing your words and your life with us so eloquently.ReplyDelete
Those brown paper towels. What doctor does not have a box of tissues???
"You are neither here nor there,
A hurry through which known and strange things pass
As big soft buffetings come at the car sideways
And catch the heart off guard and blow it open." ~ Heaney
oh...sending you Big Love Elizabeth. You are amazing. XXOOReplyDelete
Thinking of you and sending you & Sophie good and positive thoughts.ReplyDelete
I'm so sorry about the atrophy. It's incredible that you can write about it in such a beautiful way, and using the lush language of botany. Thinking of both of you, as always!ReplyDelete
You knew before he told you. Still, you had a haze of hope. But the seeing and naming are a spotlight and it hurts. I'm so sorry.ReplyDelete
I'm so sorry! Thank you for sharing this beautiful piece.ReplyDelete
Right here and with you and adding my portion to all the love that surrounds you and Sophie, you two amazing beings.ReplyDelete
What a lovely way to write about frustrations of no diagnosis and poor solutions. "The language of medicine mixed up with the language of business the language of poetry." Words blooming from your mouth. Your piece fits with the picture of Sophie, dressed up, her hat in blooms, thinking... thinking what? About bushes and ferns? Doctor offices? The what ifs? The what now? The same as you? Thanks for sharing, like you I wish all these troubles and worries gone.ReplyDelete
I’m sorry to hear about the atrophy, Elizabeth. Maybe it’s temporary. Maybe another part of Sophie’ brain will make up for it. Sending love to both of you.ReplyDelete
Elizabeth. Your words her beauty. Your love.ReplyDelete
I'm so sorry you received this devastating news. If I understood correctly, there's a chance though, that the anomalies found in the MRI aren't new in which case they may not underlie Sophie's recent problems. If so, she may very well still recover her skills which I really hope she does. Please keep us updated. Even though we've never met or even spoken on the phone, I feel as if I know you. And that photo of Sophie looks like a beautiful oil painting.ReplyDelete
(P.S. Couldn't the doctor have found you a few real tissues?)
love to you, elizabeth. as always, it is a privilege to learn how, exactly, strong women aryy on, how they do what they do. in your case, it is with language, and undying love, and a boatload of intelligence. xoReplyDelete
Reading this in work and trying not to cry. You did write it beautifully. I'm so sorry.ReplyDelete
i am so sorry. My SILs cousin who so reminds me of sweet Sophie, though 10 years older than she is, under went the same journey some years ago when drastic loss of function occurred. She was treated lovingly and holistically as much as possible as her mother is a homeopathic doctor who eschews much of modern medicine. Apparently, this happens a lot with forms of epilepsy.ReplyDelete
The cousin sadly did not get seizure relief from any cannabis products as Sophie is.
I'm interested in whatever relief the Neurologist can provide. Best to both of you
Thank you for sharing your life through your words. It is a privilege to know you. ❤️ Love to all.ReplyDelete
Masterful use of words, sheer beauty to describe the horror.ReplyDelete
I'm so sorry, Elizabeth. Sending love.ReplyDelete