Friday, October 13, 2017

How We Do It: Part ? in a Series Where I Call on the Hive Mind



For how could one express in words those emotions of the body?
Virginia Woolf, To the Lighthouse 


I need the hive mind as collective unconscious, acting in community and sharing in resources and thoughts. I don't need conformity or group-think. There are two ways of seeing the hive-mind, and I'm not seeing it as pejorative. That being said,

Help.

I just had a little bit of a freak-out after trying to feed Sophie. I've written before about this, but things that used to come easily to her: eating, drinking, swallowing, walking, going to the bathroom (pooping), reaching for things, generally moving, are sporadically and inconsistently difficult for her. 

Let's cling to the word inconsistent.

I can't do this anymore, is what I said on the phone just now. I am reaching back to the past, to all the times that I couldn't "do this anymore." I leaned my head on the wall. I was sitting in a chair in my bedroom on the far end of the house, the farthest away from the front end of the house where Sophie sat in her chair. I couldn't do it anymore. I couldn't do it anymore back on the fourth floor of the walk-up on West 73rd Street in 1995 and placed the screaming baby in the middle of the bed, then walked into the bathroom and turned on the shower and crouched on the floor next to the toilet. There is something very primitive about not being able to even feed your child, I said on the phone just now. Soft egg lay all around Sophie's wheelchair and the dog lurked at my feet, trying to edge in. I remember Sophie pacing around her room like a drooling tiger back when she was on the ketogenic diet and I'd come into her room with a tiny ceramic dish of frozen butter and a slice of strawberry on top that was her meal. The brutality of that time. Eighteen years ago. Those two examples suffice.

My point is that I can't do this anymore. (You know I can).

So, hive mind. What is going on? I am waiting for the results of an MRI that Sophie had last week, but I'm pretty certain it will be inconclusive. Her most recent EEG shows nothing more than the general fuckery of Lennox-Gastaut syndrome and the seizure pattern that she's had for more than two decades. She is, actually, doing pretty well on the clinical seizure front, given her history. Does a body just finally tire out from all the shit? I am suspicious of Sophie being over-medicated. There's the Onfi, the Clonidine, the CBD, the THC. 

Please buzz together and by yourself. Send me your thoughts. 

What does it mean then, what can it all mean? (more Virginia Woolf, from To the Lighthouse)


40 comments:

  1. I wish I could help, but all I can say is that everything is crazy right now, and maybe it affects her too? Sending as much care and healing thoughts to both of you as possible. Try to remember to breathe, for yourself.

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  2. Oh love. I can't imagine your exhaustion inside your caregiving. I can tell you that I've been dangerously over medicated for the past four years thanks to my useless shrink. Since I weaned myself off all but two benzodiazepines a day and cut my Tegretol by 3/4 my appetite has improved and my physical activity has increased and my sleep/insomnia issues are mostly better. I know though that eventually the crazy will return n full force so this for me is temporary. All I can say though is that I'm in your corner.
    Love
    Rebecca

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  3. Oh, Elizabeth. I have no idea but I will say that if my body had gone through all that hers has gone through, it would be tired too.
    I love you both.

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  4. Sophie/you/(me)... all worn out. These are hard days. I am thankful you and Sophie have people to hold on to. Love to you all.

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  5. Darling Elizabeth, I have nothing to offer that I can be sure of, except that you perhaps can let yourself sit and breathe and rest for a bit, holding onto the word *inconsistency* which suggests it will pass in a bit. this is my thought and my prayer. so much love.

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  6. Here. Witnessing, albeit from afar. Holding you both in my heart. With others, acknowledging the word "inconsistent." I am weary, so weary of the endless "inconsistencies" in my own existence. I do not attempt to compare mine with yours, with Sophie's. Yet, to a minuscule degree I can understand the feeling of "I can't do this." How many times have my friend with MS and I had the conversation of "is this my new normal? Is this a glitch? An inconsistency? Will this get better? Worse? How will I do it? How can I?" Anyway, I am here, at this moment. Offering nothing, but waiting with you.

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    1. Your grace in illness is so inspiring to me, Leslie. May you be well, too!

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  7. Here cognitive functions are declining. I would vote for benzodiazepine related damage. I did a quick search and found mention of cerebral cortex damage done from long term benzo use.

    Cerebral Cortex Disorders
    A number of disorders result from damage or death to brain cells of the cerebral cortex. The symptoms experienced depend on the area of the cortex that is damaged. Apraxia is a group of disorders that are characterized by the inability to perform certain motor tasks, although there is no damage to motor or sensory nerve function. Individuals may have difficulty walking, be unable to dress themselves or unable to use common objects appropriately. Apraxia is often observed in those with Alzheimer’s disease, Parkinson's disorders, and frontal lobe disorders. Damage to the cerebral cortex parietal lobe can cause a condition known as agraphia. These individuals have difficulty writing or are unable to write. Damage to the cerebral cortex may also result in ataxia. These types of disorders are characterized by a lack of coordination and balance. Individuals are unable to perform voluntary muscle movements smoothly. Injury to the cerebral cortex has also been linked to depressive disorders, difficulty in decision making, lack of impulse control, memory issues, and attention problems.https://www.thoughtco.com/anatomy-of-the-brain-cerebral-cortex-373217

    Maybe the MRI will show something. I can't imagine but I can. I always feel helpless whenever bad things happen with Katie.

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    1. Thank you Lily Cedar — I’ll keep you posted and I so appreciate your wise input.

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  8. When you can't go on anymore, all you can do is keep on trying. All those years of trying and eventually something will shift but for now, you can only hang in there, Elizabeth. Hang in and keep on trying even as you want to give up.

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  9. I hate this. I relate. Food on the floor. Dog more excited about a meal than Hope. She's lost 10 pounds since March. Ugh. Does Sophie have a GTube? It has helped a lot with filling in the nutrition for Hope who got one five years ago. I really resisted and resisted and resisted but I am so thankful for it now. I am not recommending it but just telling you my experience. Prior to it Hope always looked overly skinny​. I hated onfi and I'm happy she's off of it finally. Have you tried and how did it go? I hate LGS!!!! I worry about declining skills and worsening seizures.
    ..damn seizures. Damn meds.

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    1. Sophie doesn’t have a G-tube — I think about it. Thanks for your input!

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  10. I go into homes to do respite care but it’s not enough. It’s never enough. Going out for a few hours seems like a cruel tease for full time carers. Never enough sleep. Never time to just sit and stare out the window. It is actually a form of PTSD. Your body can’t relax and recharge, ever. Of course I have no answers and can only report what I see as a caregiver. Holding space for you, Elizabeth.

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    1. Wow, that is profound as an explanation of why we often feel as we do, Thank You from the bottom of my Heart, had an enormously tough day and never thought about it being like a form of PTSD, but that makes perfect sense actually.

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    2. Yes. Thank you Birdie, for your thoughtfulness.

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  11. I don't have any words of wisdom and it would be ridiculous to say I know what you are going through. But I know you well enough to understand that you are very tired, it's been such a long time, and that Sophie is too. I'm sorry that your are in this hard space.

    I think of you so often and I always think with love and concern for both of you, as I certainly do today.

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  12. Danny is still a picky eater but almost always a good drinker--maybe try some protein-enhanced smoothies?

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  13. I do Wish my Hive Mind could come up with some comforting and logical answers, I cannot. The only point of reference I even have is that since being taken off of all psyche meds my Grandson has lost a lot of desire to eat at all and has lost a LOT of weight and it is alarming and I have no answers. With The Man's TBI he sometimes goes 'off' eating and then regains appetite, he's too big to force feed so I just roll with it. The Grand-Daughter is such a fussy eater that I just allow her the freedom to eat when she's hungry and fixate on her food obsessions of the moment. The stress is actually causing me to lose appetite so I can indeed relate to the primal fear of not even being able to feed your family and how at times we don't feel we can do it anymore... but we can and we will... virtual hugs.

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  14. First: Sophie looks stunning in that picture. So very graceful. And maybe that is all there is, maybe she is the one saying, I can't do this anymore.
    I feel for you. Your challenge and your responsibility is beyond my understanding and I wish I could take at least some of it from you.

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  15. Wrote something. Decided it sucked. Deleted.

    But commenting with an unhelpful something anyway just as a show of support and friendship.

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  16. A form of PTSD, that makes sense. Trauma from so many sources visits us over a lifetime and each new one stacks atop all the others. Here is the best I know for myself. (To compare situations is foolish, hopeless possibly, yet I believe there are universal truths.) In as much stillness as I can summon, and for as long a time, I allow my mind to grow quiet, giving intuition the chance to speak. It is a practice built over time and without the real-life crises you face daily. I have learned to act upon wisdom I can't explain and which often makes no sense. The noise that fills our lives silences that voice. Is the collective unconscious a version of hive mind? I only know, when given a chance, intuition has taken me where I would never have gone using what might pass for logic. If this is not the least bit helpful, I apologize. I do feel such love for you, for Sophie, for your wide-armed passion, I would do anything to make it better.

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    1. Marylinn, yes, this is exactly what I need to do — what has “worked” in my experience. Thank you for the reminder and affirmation!

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  17. I really do know first hand what you are going through. Especially the eating strike; C's eating strikes have come and gone periodically over the last four years or so. They are so, so frustrating, baffling and, at times, long (the last one lasted over a month).
    But nothing is more hellish than the general deterioration. We had that when C. suffered liver damage from Valproic Acid last year. Everybody, including the doctors, was surprised when the liver repaired itself several months after removing that awful drug. The rest of her is still getting over the ordeal.
    I truly hope Sophie surprises everyone too and recovers soon.

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    1. Thank you so much. Our girls are fierce, no?

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  18. I honestly don't know how you do it. Not a fucking clue.
    Sending love.

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  19. Is it possible to wean off the clonidine? use instead as PRN? Epilepsy is horrible on every level. With the general decline we witness in our son, MRI showed nothing, but recent EEG was very bad, patterns consistent with lennox gastaut.
    -Jennifer D.

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    1. Yes. I’m taking her off the Clonidine. I think it was adding fuel to fire.

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  20. Sophie's pre-seizure alertness is really interesting as is your theory explaining it. I can't say C. is always very alert before a seizure but there certainly is never a trace of a warning. Consequently each one still blindsides me as if it's her first.

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