Wednesday, December 1, 2010

Answers to Questions

I've often joked, over the last fifteen years, that making decisions about Sophie's medical care is similar to picking which door to open. All the doors are generally closed and imposing, only a few have windows and all are heavy and mysterious. Often, we've opened the door and walked through only to turn around and walk back out. Other times we've opened the door a crack and then quickly slammed it closed. Very rarely, we've been shoved through a door and then beaten our way back out.

There's never been a door that we've walked through, at least in the medical world, that had some sort of light behind it. Never.

Despite my request to only answer my post about Sophie's diagnosis with a HOLY SHIT!, many of you have asked questions and made assumptions and that's all right. Really, I don't mind. I thought I'd update you a bit by answering a few of those questions.

1.  Aren't you relieved that you know the cause of her seizures?
Actually, it's not that simple. Sophie's MRI showed a cortical dysplasia in the left temporal lobe and hippocampus. These are generally present in utero and are a common cause of intractable epilepsy, but there is such a thing as a post-natal cortical dysplasia that is a result of intractable epilepsy. Which one does Sophie have? I don't know, yet.

2.  Are there treatments for it?
At this point, no. Brain surgery might have been an option if it had been seen earlier, but that's a whole other can of worms. I'm personally grateful NOT to have to make that decision because while I know surgery has been miraculous for some, I know an awful lot of kids who've had it and it hasn't helped -- or made things worse. My feelings about epilepsy brain surgery are way too complex for a blog, anyway, and those of you who see those tv specials about kids who have half their brains removed and are walking! talking! living a normal life! need to really stop and think about what taking a portion out of anyone's brain really means and how difficult that decision must be for a parent (as well as surreal). Oh, another thing -- yes, there's a brain surgeon out there would jump at the chance to operate on Sophie's brain, but there are also doctors who implant eight embryos into women's uteruses, too. If this sounds harsh, humor me.
3.  Are you glad to have an answer?
I'm conflicted, actually. Getting an answer so late in the game actually underscores my already dubious feelings toward the whole western medical world, particularly neurology. It's a dark field, people, perhaps the darkest. I mean, the hippocampus is called that because it looks like a seahorse:

 One of the most difficult adjustments -- no, let's call it a life-altering happening -- was learning that those whom I had previously held in great respect, who were worthy of my awe and definitely those to whom I deferred -- were actually in as dark an area as me. Medicine, I think, is less science and more art and with a child like Sophie it's a dart game, a crap shoot, three heavy doors. The near existential feeling of being alone, of feeling uncared for, is substantiated by this "discovery." It's nothing personal or ill-intended, I realize -- it's just the way it's been for me.
4. Has your view of vaccinations changed?
No. I've never been against vaccinations. I just know that Sophie's first vaccinations caused huge problems, and I don't think there's a single person who would rule out unequivocally the possibility that those vaccinations were a catalyst for her seizures. Pertussis was contra-indicated after she was diagnosed because it was a live-cell vaccine in 1995 when she received her first dose. The vaccine is safer today. I believe with all my heart that vaccines can be and will be safer but that they are not as safe as they could be at present. I would never NOT vaccinate my children and then not support their health through nutrition and integrative medicine. I have worked my ass off to do so with all three of my children. The only thing I despise about the vaccine debate is the simplicity with which it is conducted on both sides, and that simplicity is what makes me nauseous quite literally.
5. How are you now that the news has sunk in?
I'm still shocked about the news and feel depleted and sad. I think that's because it's sort of a replay of when Sophie was first diagnosed, so many years ago. I was so much younger and naive and she was just a tiny 12-pound baby. It makes me sad to think of that time, to think of myself at that time and all that was lost and the road ahead and just the damn difficulty of it. Somehow, this second diagnosis day has plunged me back there, and while I know I won't feel this way forever or even for very long, I feel extremely sad. 
6. How is Sophie doing?
She's not doing very well at all right now. She has many, many large tonic seizures (those are the grand mal type) every day. It's wondrous that she gets up and walks, eats, occasionally smiles and watches the trees sway in the southern California breeze. We are continuing the IVIG treatments but I am nearly prostrate with confusion and grief about her seizures. I believe that only people who have this specific experience can truly understand the horror of seizures, the relentlessness of them and the FACT that I've been doing this, watching them, for over fifteen years. There is one new drug that we might try, but I have little heart and hope when it comes to meds. I don't know what else to tell you.

One of my dearest friends, Cara, who suffers from a very debilitating illness, said the most comforting thing to me the other day when I told her about the results of the MRI. She told me that this news made her realize that Sophie has always been who she is. And who she is is an incredibly beautiful, graceful, spiritual being who affects everyone she meets. Perhaps that is what I'm grappling with -- that essence of her that defies knowledge and treatment and fixing.

That makes sense to me and gives me peace.

Thank you for your concern, your comments, your questions, your prayers, your candles and your Holy Shits. I am so, so grateful for all of you.


  1. "Sophie has always been who she is."
    Exactly. Nothing has essentially changed except perception.
    You are so loved, Elizabeth. You and all of your beautiful family.

  2. you are right...
    no one can know the enormity of this life you share as mother to sophie.
    i love your friends words.
    i too see the peace and beauty that rings out of your dear sophie and touches us all.
    this is as strong and real as the mystery the enfolds you.
    i have no questions for you.
    i only offer you peace, support and time to come to each new moment renewed and fulfilled.
    it is the way of things....
    to be, regardless of understanding.

    to be.

    and oh how you and sophie are the beauty and strength of being.


  3. Your friend, Cara, brought the perfect message. In the photos below today's post, we see Sophie's clear, open beautiful eyes and know she is exactly who she is. What a fierce and powerful love you bring.

    Holy shit.

  4. Thank you so much for sharing. The courage you show by voicing your pain is a balm to all who feel isolation in such sorrow.

    May you be held in compassion.
    May your pain and sorrow be eased.
    May you be at peace.

  5. You have eloquently articulated things I cannot imagine...but now can, because of your ability to communicate with such fierce intelligent and beauty combined. As you write that it is almost an 'exstenstial experience' (spelling...) I become closer to understanding how this feels to you, the depth and darkness with pinpoints of light, like the Universe, terrifying, beautiful and lonely. I wonder if you might consider putting together a memoir based on your experiences from Sophie's first siezure on. I think it would be absolutely amazing, and there are many out there, those with kids who have this brain disorder and those who don't, who would pay to read it. It might be a way for you... to make something out of what has happened- to me, that is what art can do and does for me, my novels and essays and poems help me to create something out of choas or confusion or pure emotion, help me to define it or define what cannot be defined.

    So much love to your beautiful heart and mind, Elizabeth.

  6. This is beautifully written and all of your emotions and insights make so much sense.

  7. thinking of you today Elizabeth. the meds the meds the meds. jesus. we are in the dark ages of medicine.

  8. I love what your friend Cara said about Sophie. It is truth. And you are, as always, an eloquent advocate for your beautiful girl.

  9. Your friends words were perfect.Just perfect.

    As a mommy who has that brain surgery card in hand,if need be,I CANNOT imagine ever really being in the moment where the decision has got to actually be made.The thought of it,beyond scares me.

    Sending you love and peace and strength,as always.

  10. Your points are excellent and very thoughtful. I don't know that I would have bothered to answer any questions at this point. Your grace under pressure is amazing.

    We had another in a series of Holy shit moments a few months ago. Yet another life threatening condition was revealed. I was devastated until I realized that the only thing that had changed was my knowledge. Maggie has likely had this condition for years and years.It was newly discovered, but not new by any means.

    Your friend is wise. Sophie gas always been who she is. Now there's just a Latin name and a lot of new questions.

  11. "...that essence of her that defies knowledge and treatment and fixing."

    perfect perfect perfect.

    I love what your friend said.


  12. What modern medicine doesn't know is so vast, it defies the imagination. Sadly.

    I think that all we can do is love our kids, as they are, and you do.

    Take care.

  13. I am in awe of you. And Sophie.

  14. I love what Cara said. It is true.

    Your fresh grief makes perfect sense, to me. Are you starting over? No, but you have a new awareness, of sorts - and why wouldn't that bring up memories of the beginning of it all? Take your time, and please, take good, tender care of yourself. This is big inner work. My heart is with yours.

  15. Such an arduous journey you are all on! I am pleased that you are trekking with open minds, open eyes, and open hearts and that the path is lined on both sides with people who are cheering you on, no matter where this path leads.

    Love and light.

  16. Your grace is remarkable; your ability to convey your emotion and beauty with words humbling. I wish you peace.

  17. Segev, born decimated, was making some progress until one night at age six weeks when he had a mild fever. Over night any and all motor control that he had, disappeared. No this was not after inocculation, though it could have been had I allowed it. Infantile spasm usually shows up at 3 months so there is a great deal of possibility for coincidence.

    MRI has advanced, it's true, but more importantly the ability of neurologists to READ them has advanced. From my research the "severe damage" seizures can cause to the anatomy of the brain is not proven-just the opposite; Segev has had approximately 500,000 seizures in his time and he is better in the six months than he ever was, cognitively.

    We are in the dark, and we need more candles Elizabeth.

  18. Oh Elizabeth! I missed the diagnosis post, will go back and find it...but I feel a weight in my chest after reading this.

    You've done everything you could and more than anyone could have imagined.

    I'm hoping for Sophie and for you. Hoping for peace.

  19. I'm so sorry to hear that Sophie is not doing well at the moment.
    I've come to share your view that medicine is less science and more art - and also the people it cures are not just bodies but also souls, just like the doctors who practice it.
    Thank you for writing all this, Elizabeth. I really do hope that you didn't mind the questions. Baci.

  20. You write so beautifully about your experiences with Sophie. The painful reality of your life with her seizures, and your love for her, are palpable.

  21. You have both my candles and holy shits going full blast.

  22. I'll hang in there for you if you hang in there for me. There must be a better way to think of life than in terms of what's lost and what's gained, but I can't think of how that would be right now. Life as an eternal present moment, maybe.

  23. The Holy Shit is still playing full blast in my head.

    And it makes complete sense to me that this diagnosis would bring back all the old grief of Sophie's first diagnosis.

    I'm hoping for a break from the big tonic seizures and a gentle lifting of this new heavy weight.




Related Posts Plugin for WordPress, Blogger...