Monday, June 21, 2010

A Further Shore

I remember the page in each of my three children's baby books that was titled something like "important events happening now" or "what's going on when I'm born." For Henry, it was the Monica Lewinsky-Bill Clinton scandal and for Oliver it was the abysmal, depressing election of George Bush. For Sophie, it was the O.J. Simpson trial and the Republican takeover of Congress. On page 34 of Sophie's baby book The World on Your Birthday, I wrote under My view of the world today:

Everything in the media would lead you to believe that the world is a terrible place, but I tend to hope and trust in the beauty and constancy of life on earth.

When I wrote those words, I naturally had no idea what three short months would bring our small and very new family, but if I were to have a baby today, I would probably write much the same thing. I am curious, often, about the nature of hope and go back and forth from thinking that it's the realm of the idiots (myself, included) to the abode of the transcendent. 

Last week, I had the privilege of meeting a fellow blogger, Teresa, and and her beautiful family. They had come to Los Angeles to see, once again, Amma, the Indian, living "hugging saint." Teresa and I have been reading each other's blogs for over a year, and she had told me of her special relationship with Amma. She had even sent me a photo of Amma and some blessed ashes and flower petals that I put in Sophie's room. So, when she came with her family and offered to introduce Amma to us, I jumped at the chance. As readers of my blog know, my daughter Sophie is going through a particularly difficult time right now. She is having a recurrence of ESES (electrical status epilepticus in slow wave sleep), a rare seizure disorder that wreaks havoc on her brain and is difficult to treat. This syndrome is on top of her "normal" baseline brain dysfunction and renders her very frail and wracked by really debilitating daily seizures. That I have felt desperate of late would be an understatement and getting through each day has been dreadful in every sense of that amazing word. 

So, we went to see Amma, and while I'm not the sort to have blind hope, I do hope with what I call realistic pragmatism. I think to myself that it couldn't hurt. I think we might as well try this because who knows, it might help. What have we got to lose? I'd add that the very nature of hope can sometimes inspire the most banal thoughts and platitudes, and perhaps hope's opposite does as well. Why bother? Nothing ever works. It's probably a scam, a crock of shit.

I wrote a bit about the experience on my personal blog and will say here that it was quite a profound one. When I was pulled into Amma's strong embrace, my face buried into that soft area below her shoulder, my shoulders shook with before-tears. Sophie was beside me, squirming and then quiet on Amma's other shoulder. Her body smelled like honeysuckle which seemed amazing to me, given just how many people had been embraced in that exact spot. Amma murmured words in a language that I didn't understand and when someone standing next to her whispered something to her, she said the word epilepsia and then we were very quickly pulled off of her and ushered away. Several people rushed around, saying that we needed sandalwood, and before I could practically blink, Teresa appeared with a fresh piece of this precious wood. The wood was given back to Amma, who evidently blessed it and then instructed us to make a paste from the wood by grinding it on a stone, each night with water and then smearing some of it on Sophie's temples and head.

And that was it.

And that's what we're doing. 

For the first five days or so after seeing Amma, Sophie had no big seizures. She was remarkably happy and vibrant, really, very different than she had been for a long, long time. I, too, felt a relief, an ascent into what I can only describe as ease. I told myself that it was good: I allowed myself to hope that maybe, just maybe this would be it and wouldn't that be weird? But I also told myself that it might not be it -- that healing is not necessarily in time, something that our conscious minds can comprehend. I don't know, really, how to explain this.

Sophie had a few big seizures today. They seemed to come out of the blue. I heard a thump from her room and walked to it, saw her lying on the floor, her arms out, face-down. It's a terrible sight and my hope sank in that moment as I righted her and wiped her forehead.

I will grind the sandalwood each night and make a paste and smear it on her head. I will hope that the cooling effects will work on her brain. I will feel despair again and hope again, because that is how it is.


So hope for a great sea-change

On the far side of revenge.

Believe that a further shore

Is reachable from here.

Believe in miracles 

And cures and healing wells.

--from The Cure at Troy by Seamus Heaney


Elizabeth blogs regularly with hope and despair at a moon, worn as if it had been a shell. She is incredibly grateful to Teresa and her family for what they did for her family.


  1. I'm thankful the sandalwood gave her a short respite. The image of your daughter lying on the floor, felled by another seizure, made me cry this morning. I feel helpless as well in the face of my daughter's problems.

  2. Big, fat sigh. You and Sophie are constantly in my thoughts. I pray for RELIEF.

  3. Just as I was clicking on this link the thought flashed through my brain *how can I get to see Amma next week?*
    I'm sending you a link via email

  4. As I said before, even five days (FIVE DAYS!) of Sophie being free of those brain storms was a miracle in and of itself. I truly believe that, Elizabeth.

  5. my darling ones...
    sweet mermaid and mother of...
    i keep you in my heart of hearts.
    i place you in flowers that bloom hope eternal.
    i believe for you,
    when the believing is too difficult,
    until you can float on the cloud of believing again.
    sending love.
    and them more some.

  6. I was sittign at my desk cryign today as we, too, have a baby with seizures and spent most of a day yesterday in the ER. I knwo the helpless feeling of ..... "Please God...... let anything give me relief..." My heart aches for you...... we love our babies one sandalwood ash paste at a time.

  7. Meeting Amma sounds like such a beautiful experience. And, as you mentioned, I also believe that "healing is not necessarily in time." But I am happy that Sophie (and you) had the blessed five-day reprieve. Sending love.

  8. You need to read Hope Edelman's book, THE POSSIBILITY OF EVERYTHING.

  9. I felt transported with you as I read this, and wished to meet Amma. I am sorry that relief from the seizures did not last longer, but I am glad you and Sophie had those five days.