IIt is August 2018. We are in a New Jersey cemetery where some of my ancestors are buried. My father finds his parents’ grave, and puts two stones in a pile of constantly growing stones. I have never met them in my life. As I lay my stones, I wonder how the disease and the weakened immune system embed in the genes of the Jewish people, black people, and other offspring of genocide and trauma. I think about showing up in the mental health system as a child – mainly because of the consequences of unlimited trauma and crisis – and there was something wrong. I
As we move to my aunt’s grave, I see my father preparing to read a prayer for the dead. He doesn’t have to read a book. He has been uttering these words for 45 years. These are the words that formed the backbone of how he marks time: a year spent with his parents.
My father puts his sister’s name on his stone, and cries as he reads the words. At this moment, I am proud of my father, and yet I have never been more devastating. In this moment, I understand exactly why grief embraced him like a blanket and never let him go. In this moment, I am outraged by the way his grief has robbed me and my family of time, energy, and attention. At this moment, I see the trauma from her belly to my navel like a cord of blood, a red wire. I imagine myself breaking the stench of both of us drowning in the same boat, drowning in the same sea. I love you Baba I want a cure for you. I wish healing for me too.
In a culture that often defines mental health as the ability to produce, work, work, influence others less and appear as “normal” as possible, however, there is no room for grief. It adds long-term grief disorder to the recently updated DSM, short for Diagnosis of Mental Disorders and Fact Sheet (aka “Psychiatric Bible”). Even more distracting and confusing.
Many of us are conditioned to believe that mental illness is like diabetes — a disease that needs to be managed and treated with medication. But my life experience, my mental health and my work for more than a decade in the disability justice world, the intelligence and research of my community members paints a different picture: social, political and economic factors are important to get to the root of mental illness. Suffering and pain.
When we think of the myriad ways in which marginalized people are deprived of dignity, humanity, and justice – how long is the “right” time to mourn? Loss not one, many? Generation? Thousands? Millions? In a way, I imagine, grief that does not go away is a fair response in a world that does not allow us to stop, relax, or be present. Prolonged grief, like insanity, is an act of resistance.
Reaching the root cause of suffering
It is a deep delusion to say that we are sick of not being able to move forward in life, facing the never-ending onslaught of trauma, oppression, loss, crisis and anarchy. Also reported a shock shift “What do you have?” Of “What happened to you?” Doesn’t look right. It doesn’t feel perfect enough because it’s not just about me.
Grief, which does not go away, is a fair response in the world that does not allow us to stop, relax, or be present.
I have to ask big and deep questions Mine Root: What happened to my family? Who were they before the invention of capitalism, colonialism, and whiteness (the greatest source of crisis, pain, and sorrow on earth)? Who they became Because Whose violence is this? What did I (and my soul) lose by maintaining these same values? The work of my grief and the work of healing resides here. It is the work of ancestors. For me, my treatment will not be found in the doctor’s chair. I know I have to start with my family.
I was a senior in college when my aunt died suddenly and unexpectedly. In many ways, his death brought me home – to my Judaism, (a) my culture (s), and my ancestral practice. Her funeral was handled in an Orthodox fashion, and for seven days, we sat Shiva. I learned that my people know misery. They knew the deep pain. So deep is the whole process for our grief. We do not cook or clean. Instead, we get. We sit, we talk, we listen, we laugh, we eat. We sing our songs and read our prayers. White supremacy allowed me to deviate from the individualistic values applied to the rituals and the magic of my community. It gave me a container for my grief as a lifelong process that I did not have to navigate alone.
I did not ease my pain. We dance with each other in the morning and in the evening, and it’s not always beautiful. I hear my aunt’s voice in my head, and I talk to her all the time. I bring her into every room and I see her in my dreams. If I’m mentally ill, I’m happy to be because we love each other, still. We know each other, still. When I told my friend, Thabiso Mthimkhulu (who is a great healer of Afro-Indigenous ancestors) about this new diagnosis, he laughed and said, “Grief is a ritual that is an honor to be associated with our ancestors No, just as we protect our soul with flesh and bones. ”
My issue is with the institution, a medical institution that believes and supports the myth that six months is the “right timeline” for mourning.
Make no mistake: I want to heal all of us. I wish we all had access to what we need (whether it’s therapy, somatic healers, pills, herbs, time away from your life, child care, extra money, etc.). If this label, a long-term grief disorder, allows you access to anything that provides comfort, or ease, or relief (and if you choose to be informed), then use the tools you have access to. My issue does not exist here.
My issue is with an organization, a medical institution, which believes and supports the myth that six months is the “right timeline” for mourning, a metric that DSM uses to construct long-term mourning. An organization that seeks to dig its own feet into the apathology-based understanding of mental anguish, rather than asking ourselves why we too Need Diagnostic codes to get care and support in the first place? My case is with a country where millions of people around the world have died alone, away from loved ones, in cages, cells and hospital beds who see no irony in mourning therapy; In the corner and on the floor (or if they are lucky), loved ones are saying goodbye via iPad.
During epidemics, families and communities have been unable to engage in cultural or religious mourning and mourning practices, including burial and burial practices that have deep ancestral and spiritual meaning. These wounds of soul and spirit will have a profound effect on us, long lasting mental anguish or grief which will not go away in six months. Why do this? Mourning is sacred. Grief is an honor.
When we have a place to mourn
What is possible when we have a place to mourn? What rituals and practices can we use to keep our spirits up? Poet Malkiya Devich Cyril describes grief as a “reaction to everything.”
When my grandmother died, I was looking at her photo albums, making collages, smelling her sweater, trying on her skirt, and immersing myself in her world. I painted the birdhouses using her brushes and supplies, just as she had painted the birdhouses. I placed it on the window seal of her hospice bedroom (where she breathed her last), and hung a picture of her on the wall. Now, her art fills the walls of my house and sits as a tattoo on my left hand. Her clothes fill my closet. Her Josephine The necklace sits on my neck. Little memories, objects, tricks and moments – how I process. This is how I understand and remember. Because if I don’t, I’m worried about what I’ll give my daughter. Mourning will demand to reveal its presence. It will find a place to live, and I don’t want it to be inside her.
Nowadays, I have the honor of working with healers, herbalists, bodybuilders, and care workers who are justice oriented, and hold the space for the full range of what I put on my body without the need for a diagnosis or label. They know there is no timeline for treatment, and let me lead the way. My grief after five years is a clear heartbeat that flows through me. Let it happen Let me die with it. My pain tells me she loves me. I survived. I had
Stefanie Lyn Kaufman Mthimkhulu (they / she) is a white, bizarre and non-binary, disabled, sick, neurodegenerative care worker and Ashkenazi Jew and Puerto Rican climbing teacher. They are rooted in the historical and political lineage of incompetence justice and insane liberation; And show up as an organizer, parent, doula, fellow supporter, writer, and conflict intervention facilitator for your community. Their work specializes in building non-carnal, peer-to-peer mental health care systems that exist outside the state, re-imagining everything we learn about mental anguish, and supporting caregivers to build access-focused, trauma-responsive practices. Healing the whole body and mind. Stephanie is also the founding director of Project LETS, and serves on the board of IDHA and the Disability Justice Youth Center.