I’ve been laying low, dwindling, shaking, doubtful, almost collapsing, and somehow, I feel this irreducible ember burning from the center of what I will call ‘soul’ — Wild Woman Archetype— the one that cannot be extinguished.
I could call it anxiety, trauma, or name it something else but I won’t as that hasn’t helped me to step out of its jaw or to bite back when I need to — when there is nothing else to do.
No, it’s a force that is innate, instinctive, medicinal, honoring the hard, messy, intense challenges that pressure people to normalize the abnormal, that keep us in bed under the sheets or spin us into a blur of activity barely breathing.
No, I will not succumb to predation that roams the corridors of life.
I’m retrieving my relationship to this force as I know if I don’t in any instant I could turn to smoke.
This force speaks to me through elaborate dreams and shows me there is a way.
She is the friend who has been coming to my house each month since the global eruption with the medicine of massage and messages to come out from under. She has witnessed the impact the global crisis has had on us as a family that includes two young sensitive women who require services to manage their disabilities. She has watched my diligent focus to complete my new edition of Edge of Grace and listened to my excitement over its publication. She watched my energy fade and fume when we suddenly lost a full-time care provider at the onset of our team’s book launch.
She knows it takes a village, a strong sisterhood to attend to children, to home, to place.
She is one of many in a circle of support that I sometimes forget is here, at my back, pulling me forward, reminding me to put my feet on the ground and stand up for what is good, true, and beautiful.
She is the one who practically dragged me out of my house to display my book at an art festival last week. She understands the hard work and creativity that fuels the craft of writing and the sensation of feeling the warm fresh texture of a piece of art—a book in your hands.
She reminds me that in cultivating our relationship with what is important to us, we rekindle this irreducible ember with feeling, sensation, aliveness—reality. It walks into our dreams, visions, and imagination and becomes our new normal, a doorway to presence not found on the screen.
She comes and if valued she will stay.
She reminds us that nothing can be reborn until something old first dies,
Wild Woman knows instinctively when things must die and when things must live, she knows how to walk away and when to stay.
Will or can she appear as a needed social worker to help navigate the systems of support that we engineered since my babies were born at one pound each?
In addition to our in-home navigation of securing skilled help, the overarching center funded by the federal government to provide services for people with disabilities is shockingly perplexing.
Libby, my severely brain-injured twin since her birth twenty-seven years ago has been without case management since global insanity hit hard. I have a long record of emails requesting the center to address this outstanding complex need. Only a month ago was she given case management.
I like this case manager, she is sharp, caring, and eager to bridge the gap in a broken system. I don’t blame her for anything, I want to team with her to make things right.
We are short on time as the contract with the fiscal manager for Libby’s nursing will expire at the end of the year. In short, I am pressed to retrieve documentation from all of Libby’s medical sources to show that she is still in need of nursing care. When a system is dysfunctional the burden of that dysfunction falls to the parent, who is asked to mend something far out of reach.
I would love to tell them; ‘she does not require skilled nursing services, she has been magically cured. She was blind, but now she sees; she was mute, but now she speaks; she was unable to use all of her limbs, but now she is sitting, standing, walking, running, dancing, singing, feeding, swallowing, toileting, and breathing all by herself without the consequences of not doing so for life that riddle her daily, moment to moment from a brain injury that affects every area of function excluding this irreducible ember that burns brightly through her eyes, her spirit, her laughter, her sweetness that whispers, “I appreciate you. I love you. Thank you for holding me.”
All of us who get to care for her: change her diapers, feed her, hold her, and feel her spirit—her excitement for life, her acceptance, and her fight—get her.
It is because of her that I will bite back.
After too many hours of stumbling through online medical portals, I could meet with her primary physician on the phone — on short notice she agreed to talk over Libby’s case.
More stunned than myself that Libby’s case was left unattended by the government-funded source, onto me—the sole parent to sew it all together, she said, “What do we need to do?”
Encouraged I told her, we need documentation that demonstrates her ongoing medical needs. “That’s easy. It’s all here. Let’s reiterate the aspects of her care that require skilled nursing, IE suctioning; seizure and neurological precautions; skin breakdown; feeding tube; special diet and medical equipment, …”
The list continues, surprisingly she added, “The mother is overwhelmed, without the current nursing care she has not been able to arrange follow-up neurology since her OR visit, find adequate support for her twin, or the rest that she requires.”
I felt seen and heard. She knows I am not a skilled nurse, but I am the night watch, the trainer, the security guard, the one who ensures proper care is underway. I admitted to our doctor that I had been slipping. She said, “Of course, you’re in survival mode. We’ll get through this. When can you pick up the documents?”
That was yesterday. I picked up the documents right away, and everything was written clearly, plainly, and perfectly.
The case management center that is federally funded will arrive today at 11 AM. We will present our case.
I’m off to a yoga class with Abby. I need to breathe so I can bite back. It is not my fault that Libby’s case fell through the cracks and they are fumbling to catch up. I need them to do their job, to find their way out of the woods.
Whatever the outcome, this ember that burns will continue…
Learn more about Prajna, her daughters, and their amazingly challenging and inspiring journey in Edge of Grace, Fierce Awakenings to Love here.