Thursday, May 25, 2017


The New Neurologist was great.* He spent nearly an hour with us, listening. He very much wanted to help us. He called us veterans. I watched him observe Sophie throughout, and even though he doesn't know her, I think he got her. I feel a new resolve to get to the bottom of things and figure out what might be causing these weird symptoms. The New Neurologist was pleased that the CBD is helping Sophie's seizures and puzzled over her deterioration. He might have some ideas. He seemed intellectually curious and kind. The New Neurologist wants to rule out some things and has ordered an MRI, a lumbar puncture and some blood tests. As loathe as I am to do tests, we haven't in more than a decade, so I'm putting aside my partially justified and partially insane doubts about the profession and letting go. Plus, he gave me his cell number on a sticky note and said he was available at any time if I needed anything. When I type that out, I feel a bit of a thrill at the words -- a sort of pick-up line for a mother starved for attention for her declining daughter. Gallows humor. My parents are helping me to purchase a bath lift system for our bathroom so that we don't continue the dangerous clusterf*^k that is bathing Sophie. This sort of thing is a kind of acceptance and it is difficult to do, and I think you know why. Acquiescence. 

Is there a difference between acceptance and resignation? Between surrender and acquiesce? We're all good here with words. You tell me.

Here's a poem:

Because Even the Word Obstacle is an Obstacle

Try to love everything that gets in your way:
The Chinese women in flowered bathing caps
murmuring together in Mandarin doing leg
exercises in your lane
while you execute thirty-six furious laps,
one for every item on your to-do list.
The heavy-bellied man who goes thrashing
through the water
like a horse with a harpoon stuck in its side and
whose breathless tsunamis rock you from your
Teachers all. Learn to be small
and swim past obstacles like a minnow,
without grudges or memory. Dart
toward your goal, sperm to egg. Thinking,
is another obstacle. Try to love the teenage girl
lounging against the ladder, showing off her new
Cette vie est la mienne, This life is mine,
in thick blue-black letters on her ivory instep.
Be glad she'll have that to look at the rest of her
life, and keep going. Swim by an uncle
in the lane next to yours who is teaching his
how to hold his breath underwater,
even though kids aren't supposed
to be in the pool at this hour. Someday,
years from now, this boy
who is kicking and flailing in the exact place
you want to touch and turn
may be a young man at a wedding on a boat,
raising his champagne glass in a toast
when a huge wave hits, washing everyone
He'll come up coughing and spitting like he is
but he'll come up like a cork,
alive. So your moment
of impatience must bow in service to the larger
because if something is in your way, it is
going your way, the way
of all beings: toward darkness, toward light.

Alison Luterman

*For those who missed it, The Old Neurologist we've used for nearly four years lied to me about why she didn't want to discuss medical cannabis and Onfi interaction when Sophie was hospitalized two weeks ago. She claimed that she had received direct orders from her boss that she wasn't to discuss medical cannabis. It turned out that there was no such policy (at least officially, and I wouldn't be surprised if Pressure From Above was happening), and that she just didn't want to discuss medical cannabis with us. I don't trust The Neurologist now and certainly can't leave my daughter's care to her. When the profession's only use and power for your child over 22 years has been to write prescriptions for lethal and ultimately useless drugs, however well-intended, if you lie to me, I can't do it. I understand fear, and I've tolerated that. Transparency and good communication is as important as intellectual curiosity, and if you don't have either, I can't do it.


  1. I am so unreasonably thrilled by this news, a neurologist who might be one to trust, my God. That's a beautiful photograph of Sophie, what was she looking at, I wonder? Oh Elizabeth, you are veterans, and I appreciate the New Neurologist for understanding that. I hope you will find some answers, soon. At the very least, I hope you will feel you have a true medical partner in the new doc. It could happen. Love, R

  2. So glad to hear you found a "human".

  3. He gave you his direct line? I sort of love him already.
    As someone who uses both lifts with those I care for, I think it is a great idea. Sophie can relax in the warm water and you can save your body from inj. But mostly for Sophie. Baths are wonderful and soothing.

  4. Dearest Elizabeth -
    My heart's with you.
    You've turned your anger and all the rest of it into powerful writing, and voice.
    And your choice of poem is perfect, perfect.
    I'm in awe. xxoo BA

  5. The New Neurologist hankers back to an age when doctors actually cared about their patients. They patience as well as patients. I love the poem, too.

  6. I'm glad you like the New Neuro. Thinking of you both, always.

  7. That neurologist sounds good! Let's hope he remains that interested and committed. I so very much hope so, you all need it and deserve it.

    A difference between acceptance and resignation? Between surrender and acquiesce?

    For me, it's all a muddle, a chaotic mess, a big fat scary wave I am riding on and what gets me through is wonder and gratitude, again and again. I don't do battle any longer, too exhausting, too close to the negative edge.

  8. Oh, what a glorious poem. For all of us, for these and other times. You have, probably, no idea how fiercely I hold you and Sophie in my heart every day with equally fierce trust in the best medical help and a benevolent universe. A lying doctor is possibly one of the most useless and dangerous creatures. xo

  9. What a blessing that he simply listens to you, if nothing else! And to know that he respects what you and Sophie have been through, learned together- amazing. It shouldn't be. But it is. I hope that his curiosity leads to answers with all of my heart.
    And I love that poem. Thank you, once again, dear Elizabeth, for keeping us where the light shines.

  10. So glad to hear this. Our new neurologist is a young Indian woman and she is so much more open to cannabis than our past ones. They would just flat out refuse to talk about it. She doesn't throw meds at us either which I appreciate. She did try to tell me these meds don't have have side effects when weaning so still not perfect but good enough for now. Happy to hear about your bath too!

  11. It is so uplifting to hear about the new Neurologist. I really hope he can get to the bottom of what is going on most recently with Sophie. And the bath help too, great for both of you. I think of you and Sophie each day and wish you peace. Love Jo

  12. im glad you found a neurologist you like. Are you, have you transitioned Sophie to adult treating doctors? It's a difficult transition to make. I did not for childhood cancer son but he made transition when he moved away. But cancer hospital here is all in one and tracks childhood survivors.

    1. Rebecca Yourig -- Thanks for your comment! Sophie's neurologist WAS an adult neurologist -- we had been seeing her for over three years. I haven't transitioned her to an adult doc, but her pediatrician is happy to continue seeing her. The new neurologist sees both pediatric patients and adults. We'll see how it goes.

  13. Glad you found a decent neuro for Sophie. I wish I would have known you needed a bath lift. My daughter got hers through CCS. When she died, I sent it to Juarez, to a clinic for poor children with disabilities. CCS should have purchased one for Sophie. I hate that some CCS units and their directors are better than others.

  14. So glad you are going to try using what is probably a Hoyer lift. While the contraption (and one it is) will have a presence in the room and take up space, it will also create space, I think and I've seen happen. Making the cluster f'ck that is bathing time, less so may just create some space for you and your daughter to have a better experience and maybe even enjoy the time. Anyway...another perspective?

    Your question regarding acceptance and resignation, etc. woke me to what an important distinction it is--and I am "thinking on it."

    I read your column regularly. Thank you.
    Sandra Yudilevich Espinoza (via Andrea Carlisle and FB)

  15. How encouraging that you found a nice new neurologist; changes of this sort aren't easy, I know. I wish we had one who saluted us "veterans" and who observed our daughter intently. Never happens to us.
    And that poem; it read my mind. I do laps and come home with tales of obstacles just like those every single day. But now I'll try adopting Luterman's mindset.



Related Posts Plugin for WordPress, Blogger...