Friday, May 12, 2017

Three Comments, Plus

Sometimes I can't get out from under sorrow. An oppressive blanket that I just can't kick off. Otherwise, it lies under me, a mattress on which my strong straight back rests.

Silly metaphors.


Anger first, then sorrow, my friend Mary texted me this morning.


No rocket science, especially about the med community overall. Pharm feeds off and feeds it, now it wants the lion's share of a thing that sadly everyone else worked so hard to prove was the right thing all along. They will of course fuck it up, wrote my friend Ken in response to my most recent posts.


The unwillingness to have a conversation is shocking to me. This is how our previous two docs functioned. They didn't want to hear anything from us and didn't entertain the thought that how the body functions or doesn't on the most basic biochemical levels might contribute to seizures. Or even tell us that they didn't believe that was an issue.

So my question to myself is why continue seeing neurologists at all? It seems to be the wrong tool for the job at this point, like going to an auto mechanic to treat cancer. But we're told that we have to because it's irresponsible not to have one. But is it? We've learned on our own how to wean as safely as possible. We've learned from experience that extra [drug] and not rescue benzos best stop her clusters. But I still worry, always worry, that as EVERYONE says, we can't go it alone because they're DOCTORS and they know things and we're not. But I'm not sure doctor means what people thinks it means at all. It sure as hell doesn't mean critical thinking or curious mind, wrote my friend Chris from across the country in an email I got this morning.

The gentle advice of my friend Moye, my sweet sister Jennifer's concern, the Bird Photographer's embrace, the raucous laughter of my friend Debra, and the arrival of Saint Mirtha conspire against the immediacy of sorrow. They, and the three comments that fell into my lap this morning, peeled the blanket back.

Thank them.

I am always trying to string moments together to make a strand that will last, something to hang around my neck, but I'm thinking that I must acknowledge moments as only moments. There's no end to the stringing, otherwise. So many sounds. Sorrow. Samsara. Surrender.


  1. If you were here with me today, we would sit on the beach under an umbrella and talk and talk and talk as the endless waves and the sea salt wind washed our hearts clean and took our words with them.

  2. Since the dx "intractable epilepsy" means "medicine can't help you" and since they belittle and discourage the alternative treatments we have NO CHOICE BUT TO CONSIDER, I don't know why we see them either. Especially since these treatments work the miracles they cannot. We are indeed living in the "upside down." Where men in white coats sit by and watch the monsters killing our children and try to prevent parents from saving them. The culture of medicine is SICK.

  3. I cannot begin to tell you how much your writing means to me, it is so beautiful and eloquent and passionate and TRUTH. My heart goes out to you mother warrior lover caregiver an incredible person

  4. I'm glad the blanket came off. Even for just a little while.

  5. I agree with Allison above...Hugs to you and Sophie.

  6. Agree 100% Allison. And it's getting worst by the minute. With California Children's rights act SB18 coming soon too. Why do we even bother going to the doctor knowing there's nothing they can or will do besides sell and push more drugs. Well the evil Pharmaceutical industry makes us by requiring a med or a doctor toqualify for be efitsvsbd services or to avoid cps charges of neglect of care etc.

    Elizabeth I'm still shocked at this Dr. Saying what she said to you. Didn't expect it from her. Wow.

  7. Oh, Elizabeth - What a beautiful metaphor - stringing moments together, ...thank you. I'm sending so much love -

  8. Grace under fire.
    Love to you

  9. Sorrow. Samsara. Surrender.

    Thank you.

  10. This is a lovely piece of writing. And why you see doctors, probably the same reason we all see doctors, hope, fear and any combination of those two. There is no good answer, no fix. I imagine that drives doctors crazy. I'm guessing neurologists may be a special breed, like surgeons. They think they can fix when only they can hope as well. Psychiatrists are in the same boat. The last time I went with Katie to her appointment, the psychiatrist asked if anything had worked in the past. And I thought, "If anything had worked in the past we wouldn't be here!", it was very loud inside my head. Medicine is not so far removed from killing chickens and reading their entrails sometimes:)

  11. i didn't take calvin to the neuro for two and a half years!

  12. someone once told me that anger is sorrow turned inside out. how could you not feel both? sending love, my friend. so much love.



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