Wednesday, August 19, 2009

Miles to Go

When Sophie was diagnosed with infantile spasms at three months of age, I knew absolutely nothing. Nothing about babies. Nothing about epilepsy. Nothing about vaccinations. Nothing about doctors or hospitals or seizures or illness or drugs or death.

Perhaps it had been a charmed life; but that's beside the point.

The new path travelled through hospitals, and along it we visited neurologists and contemplated brain surgery and tried drug after drug after drug. Sophie blew up on steroids and developed ulcers all over her face. She developed pseudo-tumor cerebri, a rare side-effect of weaning her from steroids that only resolved after SIX lumbar punctures. She was five months old. Sophie screamed, often, during her first six months of life, for twenty-three out of twenty-four hours. She screamed many times until her mouth opened into an O and a rasp came out. We doled out minuscule portions of food, enduring her moans of frustration and hunger as she circled her room, like a caged tiger. I fought with insurance companies and dissolved into tears and shouts and curses as obstacles were thrown my way. And still we dragged ourselves down this path, listening to what we were told, doing what we thought good parents did. Our advisers were sometimes kind and sometimes not. They were often wise and more often not. They were valiant in their efforts and careless in their decisions.

Many angels appeared on the path, took Sophie into their arms and healed parts of her until it was time to travel away again. For this I was grateful and grew strong and filled with faith.

We often beat through thickets and got lost under dense canopies. I scraped the bark of trees until my fingers were bloodied, reached and climbed until the canopy opened up into sky. And always, always, the path cleared, grew straight when it veered away from the regular road. As trite as this analogy might sound, it is our Truth, and I've struggled through the same thickets of dense under and overgrowth in my brain, dendrites and neurons and connections that almost make it and I understand! and then something is broken or explodes and the old patterns fire and I am thrust back into darkness. Into doubt and confusion when what I know is that I must crouch and wait.

Andrew Weil's book Spontaneous Healing might have been the first passageway out, that ripped me off that path and set me on a different one, the path that I travel daily with my Sophie and her two brothers. And while I have occasionally veered off it and back on to the other, more travelled and perilous one, I have found that this other path has led to healing. The healing of Sophie, of me and of my family.

That book led me to seek out alternative and integrative care and to look on medicine and healing and curing in new and different ways.

And now, as the health care reform debate rages on and on and what seems simple to me appears chaotic and terrible to others, I find myself plunged into a sort of despair, again, about what it all means. And then I read this deceptively simple post by Dr. Weil, and it all came flooding back.

I urge you to read it HERE.

In the meantime, I'm going back out to weed.


  1. Wow. So love this can identify with it. I need to do a bit of weeding right now too. Much love to you and your family.

  2. namaste, elizabeth.

    across the wires you cannot see me bow down to brush the dust that has accumulated on your feet.

    but i do. i bow down low.

    that you were initiated into the role of parenthood this way, survived thusfar the trials, and still have the eloquence and power to speak of it with such grace shines light on the fact of your extraordinary personhood.

    beautiful mama, beautiful queen.

    many, many blessings to you and your family as you continue on your way.

  3. I agree with Adrienne (of course) and I did read that article and also the one he cited in the New Yorker. That was the article I used when I was arguing with a guy in Mexico (an American, of course- and a Texan!) about health care. He got his facts from Glenn Beck. I got mine from the New Yorker. He liked his better.
    You get your facts from your life.
    There is NO arguing with that.
    Bless you, bless your family. Let's all hope that things change.

  4. Thanks for this post. It puts my own struggles in perspective, and rmeinds me to tend my own garden.

  5. Your analogy of the forest undergrowth and the forest canopy overhead is profound. Your experience in that jungle is pure gold - thank you so much for passing along the wisdoms you have found .......

    I live in the land of suburbs and yearly well-child check ups. When was the last time I obeyed the decree of the well-child check up? It's been years. Well probably ever since our chiropractor cured my middle child of an ear infection. It was a neck adjustment, ear adjustment and willow bark ear drops. She hasn't had another ear infection since. At the time, I had her lined up for an appt. to get her ear looked at and then the pbligatory round of antibiotics. I was on the phone to the chiro to change my appt. and he suggested I keep it and bring her along for a quick look in her ear. When has an MD ever suggested a 2 for 1 deal? It's always separate appts and separate co-pays.

    Now I resort regularly to chiropractic, willow bark, tea tree oil, lavender, calendula and apple cider vinegar for all sorts of ailments.

  6. I think of you and Sophie every day. How amazing you both are.

    I've wondered how you do it--go on through the quicksand. And now I know. Weeding. There is sainthood potential in my garden right now.

  7. When health is controlled by the lobby and the pharmaceutical industries what hope is there?

    In 2005 they gave my husband less than 18 months to live. Nothing else. There is no hope for his cancer, there is no this, there is no that.

    I sat until dawn for weeks searching all over the world via the Internet and learned what other countries were doing, trying, experimenting.
    I found some obscure references in some Italian University and some in some French reference books. Old remedies against inflammation, natural sources.

    So far we are keeping the enemy at bay. I believe our arrogance, after all we are modern scientists, is what keeps us from discovering the potential if not of curing at least of alleviating the problems that affect us. If I were Queen for a day my first order of business would be to send the lobby industry packing for good and would recognize that what we today call "alternative" medicine is what could bring the answer to many problems where chemicals do not help at all.

    I am glad Sophie has a Chinese
    amah in the form of the tea lady as I call her. Her compassion is perhaps the main ingredient in those packets of herbs and that is why they work.

  8. Thank you for passing that along. As one who does not have health coverage..I think he said it better than anyone I have heard to date!! Thank you!
    I have just begun to read the wonderful books you sent me. I have been glued to her account, horrified, in tears..felt the stress in my chest, wanted to reach out and hug her and shake her hand all at the same time. Amazing to say the least!
    But is what I feel here too. You amaze me hon..your honesty, strength and love! Amazing! Thank you for the books!! They are treasured.
    Glad ya like the mermaids..I kinda like them myself. Hugs, Sarah

  9. Elizabeth you have taken the road less traveled.

    Very meaningful Elizabeth.




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