Tuesday, October 25, 2016


At the osteopath's office

The biggest spider that I have perhaps ever seen spun an enormous web that spanned about a quarter of the width of my backyard, and every morning I stood on the stoop outside my bedroom and looked at it, glinting in the sun. She sat in the middle of the web, waiting, I guess, for any errant creature to be ensnared. When I walked up to her, she sat there still, still waiting, and when I lay my finger on one of the anchor threads, she skittered up the vast and intricate highway and onto a cable that stretches the length of the backyard. This morning I stood on the stoop to see her, but she was gone and the web only a tattered thing, threads hanging.

This morning I struggled with Sophie or, rather, struggled with my despair as Sophie struggled with her seizures. It's been twenty-one years since it all started and nearly three weeks since Sophie's last hospitalization, and while her seizures are fewer and consigned to the early hours of the morning from, let's say, 4:00 am until 7:00 am when they come, one after the other, in her sleep, her days are spent very drowsy -- let's say totally drugged -- and she's unable to go to school. She is weak. She is on one drug -- a pretty massive dose, compared to where she was -- and CBD. I don't have any answers to the questions, so stop asking why? what do you think? what do They say? I don't know. I think nothing. They have no fucking idea.

I'm a giant spider, sitting in the middle of an intricate web that I've built over two decades. I'm waiting for an answer.

Here's what They did:

Sophie isn't having a lot of seizures, except for those few in the early hours of the morning (that reduce me to a raving lunatic, especially when I find her soaked in her bed and must strip it and her, even as she seizes) because she is drugged with Onfi, a powerful and dreadful benzodiazepine. She was, basically, ripped off of Vimpat, an anticonvulsant that she'd been on for over eight years (a small amount in the end, but a small amount of an AED is still an amount that the brain is accustomed to accommodating), but only after being infused with a giant dose of Vimpat (despite my misgivings about it causing hives) that was followed by giant hives covering her entire torso. Later, in consultation with a dermatologist, the three neurologists attending decided that the Vimpat and the hives were coincidental but, curiously, on the discharge papers the drug was listed under ALLERGIES.  She was hooked up to an EEG for over six days, had copious blood work, lung x-rays and urinalysis, was declared normal on entry and three days after had a urinary tract infection that called for an antibiotic (the only time she has been on an antibiotic in the last fifteen years was last spring when she had her wisdom teeth out). One neurologist suggested the drug FYCOMPA as an option to replace the Vimpat, but I pointed out that it was known to cause homicidal ideation, and The Neurologist agreed that he'd seen pretty serious behavioral issues with it. I'm not going to make any jokes here, so just go back and read those italicized words, Reader, and come to your own conclusions. I'd love it, too, if you read this post from over a year ago.

Remember that I don't have any answers. I'm a spider who's been spinning a web for years and I'm now waiting. The other option via the Great Minds of Neurology was, of course, to ramp up the Onfi and work with CBD (remember that CBD and Onfi together show promise in seizure control), so just like some game contestant, I picked that door and took Sophie home, drugged out of her mind on a nasty benzo and an antibiotic. We had absolutely no resolution to the problems that brought us to the hospital in the first place, although I guess there's some comfort in knowing that Sophie is now officially off Vimpat. They (the Powers That Be/Neurologists) have no idea about the CBD and how and if it'll work. If you remember, THE PARTY LINE is not to pay any attention to CBD other than to give a few winks as a sign of tolerance, at least until the big pharmaceutical trials do their slow slog of research. This is because the federal government still has marijuana listed as a Schedule 1 substance, along with heroin and cocaine, and has determined that it has no medicinal value and therefore no public entity can study it. Sophie had nearly two and a half years with dramatic success on CBD, and at no time during that period did any neurologist express any interest -- real scientific interest -- in that success. So we're sent home, basically, on our own, to figure things out. 

Fortunately, I have Dr. Bonni Goldstein to help me figure things out. We're trying a new strain of CBD, along with THC, this week, and I'm hoping that I can reduce the Onfi at least enough that Sophie can live. Yes, I said live, because what she's doing now is not fully living. She is drugged. I took her to the osteopath this morning, and she lay on the table under Dr. Johnson's gentle hands and actually opened her eyes and smiled at the doctor. It was the first time she'd smiled in weeks, and I know she felt some kind of release. I was sitting on the edge of the table, my hand over her legs, and I couldn't stop crying, so Dr. Johnson stood up and brought me a tissue, told me that it was all right to cry. All will be well, she told Sophie, all will be well.

This is as long of a post as that spider and her web were big. I was going to spin into commentary on Drumpf and the article I read here about his nephew who had infantile spasms, the same diagnosis as Sophie's back on that dark day in June of 1995. I was going to rail about health insurance, how premiums are going up not entirely because of the Affordable Care Act (as the conservatives say) but because our for-profit health insurance industry is utterly dysfunctional. This is my web, my rant and yes, it all goes together. Watching Sophie seize, Drumpf's nephew's infantile spasms, the removal of his healthcare coverage, the expendability of the disabled in our culture, my own fatigue and burn-out despite a wealth of support, pharmaceuticals, party lines, obtuse neurologists stuck in boxes, friends and family who just don't get it, Sophie's seizures, and I'm skittering away, my web tattered.

Here's what we need:

  1. The federal government needs to deschedule marijuana
  2. Pump money into researching its use as medicine
  3. Keep Big Pharma out of it by fostering equal partnerships between patients, farmers, interested parties and researchers
  4. Expand the Affordable Care Act into universal health coverage
  5. Vote for Hillary Clinton for President and hold her accountable
  6. Kick Donald Trump and every single racist, misogynistic, homophobic, xenophobic person who votes for and supports him out of the country and into exile on Guantanamo or one of those for-profit prisons filled with generations of black men who were thrown into them for possession of marijuana during the fake Drug Wars.


  1. Been feeling concern about Sophie, am feeling concern about my girl, am feeling concern about everything. I know how much that smile meant. May we get back or forward to easier times, and soon.

  2. A smile, she smiled, such a huge little thing.
    Witnessing, yes Elizabeth, witnessing.
    Love to you.

  3. I'm in complete agreement with your numbered action steps. Hang in there, Elizabeth.

  4. I don't know where to start so I'll just say Amen to everything you said here. My heart hurts for you and Sophie. It's almost 5 am and I am awake with you right now.

  5. That is a powerfully comprehensive list, all of it doable. Let's start on Nov 8. I wish I could be there to strip the bed before daylight while you hold Sophie. Hold on to her smile. I'm trying so hard not to say I'm sorry but I am. I'm so sorry this is happening. Sending love.

  6. Yes. As Angella said, these things are doable. And wise and would benefit so many. Everyone, eventually.
    Thank you.
    May answers be found and if they are- it's because of mothers like you.

  7. I have no words beyond
    Here I am
    Bearing witness
    Sending love

  8. Just like that spider, you have a unique vantage point and an incredible ability to sit and watch and make all the links from seemingly disparate things. The tension between sitting in the middle of the web and skittering away is apparent and it is by turns heartbreaking and infuriating to think of you there. I trust in your wisdom and the people you've surrounded yourself with who will help. I love that Sophie smiled at the osteopath's office and you let yourself cry. I hold you in love and light and believe that your clear vision of what needs to happen is the most right thing I've heard in a long time.

  9. When I read about the spider making a web I laughed and almost spit coffee onto my new iPad.

    But then I kept reading and my heart hurt for you and Sophie. I read parts out to my husband because something about this post is especially sad and awful. I have nothing to say, as usual. I am just holding some space for you.

    I hope with the biggest hope ever that Clinton gets in.

  10. From all the comments, I know we are there, in whatever ways we can muster, to hold you as you hold Sophie. Absolute power, just for as long as it takes, to right even some of the wrongs, to end the currently endless mire. A smile, I am so glad that Sophie smiled. xoxo

  11. The spider web-so much yes! So much. Sending love and hope.

  12. I agree with you looking into adding some THC. That has really work well for many.
    Also, I know you have probably tried numerous seizure meds but has Sophie ever been on Keppra (Brand name NOT generic)? It is an older anti seizure med but works well for many. It works well for my severely autistic child with epilepsy (Grand Mal seizures).

    1. Thank you Anonymous! Yes, Sophie was on Keppra when it first came out many years ago. She took it for years, but it did relatively little for her, so we eventually discontinued it. It's good to hear that your child is helped by Keppra and tolerates the side effects. Thanks for commenting!

  13. Elizabeth, you are the strongest, smartest Spider Mama I know. I wish you had answers, I wish your list could come true, I wish restful nights for Sophie and for you. Hugs and thoughts and hopes for you.

  14. oh, that lone smile after all this time in hell. no wonder you cried. I cry for both of you as well. And gosh, that doctor is special and sweet.

    yes, we need universal health care. we needed it way back when, when HRC got beat down by stupid republican congress by trying to improve our healthcare and insurance. I'll add to your list: I want the House and Senate to go Democrat and kick some ass to get important things DONE.

  15. I was at the dentist yesterday with my mouth wide open the hygienist asks about Max. She always asks the same questions, making chit chat I suppose....asking questions about one of the rarest of rare diseases that just happened to be found in my kid.

    She asked how the disease affects him and I gave her my canned answers, but when I got to epilepsy she takes her hands and tools out of my mouth and says in a whisper..."so does he take marijuana?" I told her no, he had seizure control on the medicine he has now, but if we should ever not we have that as an option. She laughed a little nervously and said, "I only wondered because many people are moving here to give their kids with seizures on marijuana, I find it all so interesting." I cocked my head to the side and looked at her. I said what is "interesting" is that Children's has one of the only studies in the US with a study on the benefits of CBD oil...kids like my son don't "take marijuana". And the drugs we have had to for years dope our kids up with is nothing in comparison to the side effects of MMJ. She laughed nervously again, and put her hands and tools back in my mouth.

    That little story to say, I felt the tiniest but of the indignation you must feel on a daily basis talking with Sophie's doctors.

    I hope you start to see more smiles soon.

  16. I am not surprised by your visit from Charlotte.
    As we have chatted before I believe she is sacred to you.
    Our spirit animals will often appear to us during times of stress or great transition.
    They are there to provide grounding.
    The fact that her web filled a large portion of your yard
    is equally large in its validation for you.
    When they appear we can often learn from our exchanges with them.
    Think of similar energy, attracting similar energy.
    How did you feel when you first saw her?
    You watched her every morning and seemed to find comfort in her presence.
    You approached her gently and with curiosity.
    She didn’t move, she was OK with this action,
    indicating that a gentle, watchful and curious approach is working in your life.
    You placed a finger on her sacred space and she recoiled to a more grounded and safer position.
    Is there someone or something that makes you feel like recoiling? Finding a safer place?
    Or perhaps there is someone recoiling from you, indicating a need for respecting someone’s space and the need for a gentle and curious “do nothing” approach
    Does any of your exchange with the spider resonate with you in your life, thoughts or situations?
    I am also not surprised by her sudden departure since she delivered the exchange you needed and then left. Reminding us that life is not constant but rather a flow of folks coming into and out of our lives for a reason.

    p.s. I loved the photo of you holding your camera, captures your essence and beauty so magically. You and Sophie are also in my thoughts dear friend and I am here supporting you from afar. xo

  17. For what's its worth, I'm here in MN lifting you up. A virtual stranger but I care.

  18. I just have so much hope and love for you and your precious kids.

  19. Yes to all of this! Your just is spot on. So sorry for Sophie's increased seizures and your awful am hours every morning. �� I hope you can find a new regimen and peace soon!

  20. I remember your writing that when Sophie started getting cannabis she smiled for the first time after a long smile-hiatus. I'm hoping this smile at the osteopath heralds a speedy recovery from her mysterious downturn. You've certainly been enduring more than your fair share of challenges. Thinking of you...

  21. Thinking of both of you girls ox



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