Staying in the fire of ambiguity - it's called hopepunk
Hopepunk is the only way for mothers to live in a world of barriers and uncertainty
The collective grief still seeps into my veins from time to time but I prefer to keep it closer to home. Not that I love my special kind of ambiguous grief, but frankly, it’s too much of a heavy heartache to witness the collective challenges.
And yet! And yet, there is a hum of hope, optimism, and spiritual awakening happening collectively and within myself. It’s beneath the surface like an uprising and I float onto it like a surfer on the wave of the ocean. The ever-changing wave, consistently grows, flowing and then gently falling back, gathering tiny specks of sand to take with it back out to sea.
Sparks of hope only grow with the burning fire of punk.
“Hopepunk is a subgenre and a philosophy that says kindness and softness don’t equal weakness, and that in this world of brutal cynicism and nihilism, being kind is a political act. An act of rebellion.”
—Alexandra Rowland
I relate this hopepunk to my own story of ambiguous grief. Ambiguous grief floats out into the ethers, existing alongside fleeting specks of freedom, and laughter. Have you ever noticed that laughter is completely focused on the present moment? It’s truly one of the only times when you are thinking about nothing but the awareness of the jovial physical bodily movements and sounds erupting from the depths.
Mothers who are fighting for their children’s livelihood, health, and safety at any crossroads means we have to be warriors. We have to be the warrior that slays the dragon(s) because we see the systems of power and oppression working to stop us and our children at every turn. The ambiguous grief always brewing as we watch the ebb and flow of suffering and observe the shell of a person existing right in front of us.
A female warrior cannot be emotional, angry, or outwardly strong to any man in power for then she will be labeled as difficult, challenging, or dismissed. And that helps no one. I have learned to have my outrage and tantrums in private… well, mostly.
Working with the disjointed team for my son, I am the leader making everyone talk to one another. I am the one who is researching, and finding alternatives to treatment and care. I am grateful to have my husband as my closest confidant and partner along this journey. Many of these “ professional partners” do not care what new idea I might have in treatment or my new inquiry into whether is it really schizophrenia. These “partners” are overworked and exhausted and it’s no excuse. It’s a bigger problem of the capitalization of health care in this country and we need them to care beyond the required 10-minute appointment. I question this diagnosis the more I learn about it. He was 13 years old when he had his first break (with reality) for goodness sake with no history in the family nor experimental drug use. I believe in recovery and high-functioning people living with thought disorders.
My spiritual name is Durga, given to me by the beloved Ram Dass, at the beginning of this journey eight years ago when I shared my turmoil with him. I was suddenly learning about psychosis, treatment, and all the terms attached to it. I thought his birth was difficult enough! My introduction to motherhood was first tested to see if I could handle my son’s potential diagnosis of a rare lung disease because he had trouble eating and breathing. Thankfully, all he needed was a bit of help from the NICU for six weeks with oxygen and nasal tube feedings. Ha. I had seen nothing yet. And thus began my firey spiritual warrior goddess brewing deep in my soul, not knowing what lay ahead only 13 years later.
I still believe that the Universe provides throughout all the trials and tribulations. I have multiple examples of strange connections showing up offering a new idea or support.
I attend a wonderful parent support group held by a national organization called, Mad in America. How did I find this obscure group? I recently graduated from a 2-year Mindfulness Meditation Teacher Certification Program with Jack Kornfield and Tara Brach where students were put with five other students for a peer-mentor group. This small group was randomly put together based on the multiple mentors we selected from, and it was rare to get your first pick. In my group, one of the women in this group was the leader of this parent support group. Her son also lived with schizophrenia and had taken his life. While my son has not taken his life, it is something that crosses my mind from time to time.
Taking this a step further, attending this national group made up of people from Canada, Colorado, Ohio, Illinois, and more I met a woman who lives 20 minutes away from me and who also has a son in his 20s living with a thought disorder. What are the chances?
The Universe has been supporting me all along, no doubt. These are only two examples. I have so many more to share in future writings.
I am going down a path of research even after this eight-year journey because schizophrenia does not run in our family. My son was not using recreational drugs when he had his first break at age 13. This thought disorder typically occurs in people in their early twenties not at age 13.
His treatment was a triage, an emergency to sedate him from severe paranoid hallucinations and delusions with potential self-harm. There was never a neuropsychologist evaluation conducted. Medication masks and induces symptoms at times.
Did you know that people are misdiagnosed with thought disorders like bipolar and schizophrenia all the time?
There’s Emily Maloney, author, EMT, and ceramicist who was misdiagnosed with bipolar and through the right testing found that she lives with a nonverbal learning disability, a neurologically based developmental disability similar to autism.
And then there’s this misdiagnosis of a pharmacology student presented at the Functional Forum and how thyroid problems mimic symptoms of mental illness. Turns out it was Hashimotos, a thyroid issue that can be cared for with a different medication. Getting these specific thyroid tests is no small feat and I have been met with barriers to getting them for my son.
Pharma is all about profit and they don’t care if you die. Medicine and science are amazing but it’s the pressure of this profit that causes doctors not to look into things like food as medicine, the cause of inflammation, trauma, or anything that looks at the whole body. They are not trained in nutrition in medical school and the food pyramid is bullshit. Medication masks the symptoms and doesn’t look beneath the problems.
The arrogance (of doctors) comes into thinking that what they don’t know is not worth knowing. Gabor Maté
I am convinced that it is a combination of my faith in the unseen or the Divine, my commitment to daily meditation, and talking about it to anyone who will listen. The Universe hears what you put out into the ethers. If you’re negatively or complaining consistently, that’s what you’ll get back. If you get specific enough and believe with your whole body and soul, you will get what is needed as well. It is sometimes necessary to get so specific with rage and anger as well.
Give it all up. I give it all up with fiery rage no longer asking, “Why?” I have no control over my life or my son’s life. Manifesting is the precise balance of surrendering and specifically asking for what you desire. All with a large dose of hopepunk mixed in.
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Other Happenings -
This sweet group has met four times now - all parents are welcome! No need to know Ram Dass, come with an open mind and heart and you will experience profound collective wisdom and support. Being emotionally available to your children is not always an easy thing to do and being in a community helps us get there.
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I’m so excited to be joining this community as an Instructor next month. I will be teaching the class I created during the pandemic. More info coming soon. Join us for only $9.99!
“Meditation, Journaling, Using the Power of the Enneagram” on Saturday, April 15 at 12pm PT
Insight Timer - meditate with me anytime from your laptop or phone
