Today I am going to openly share an email exchange. It is not easy for me to share this, but it seems important to spark discussion. The audience I hope to reach with this is other Daughters and Sons who will hopefully comment and share their perspective. Let me give some background before I do.
Two weeks ago I had the opportunity to have dinner with one of the creators of The Crooked House website, Rosemary Zibert, and one of the people interviewed on the site, Marin. We had dinner here in New York, near Columbia University. Rosemary was in town for the theatrical reading of one of her plays and Marin was completing her first semester in an MFA writing program. We could hardly cover the many layers of personal, professional and mental health advocacy topics we hoped to over that dinner.
At dinner Marin shared a printed copy of a documentary essay she wrote based on an interview she did with me last fall. It is important to me as I organize for Daughters and Sons that my own story not be the focus of this effort. But in this case, a dialogue about what Marin wrote sparked an interesting and hot-button topic. Marin, Rosemary and I have agreed to share our dialogue here, based on what Marin wrote, as a series of comments on this post. Our HOPE is that other Daughters and Sons will also comment and share their perspective.
What Marin wrote, in my opinion, gets a bit to the heart of what peer support is about. Finding peers is important, for everyone, no matter what your background.
Here is the final section of what Marin wrote:
CONNECTING
At forty years old, Maggie Jarry is tall and pale and a little bit bohemian. Her dark hair curls loosely about her head in the same way her scarf falls over her neck. When she speaks about policy issues, her well-chosen words come out strong and clear. She has many times articulated the problem that her own life stories, and those of others like her, have revealed: “A framework for contextualizing those stories into a call to action that includes policy recommendations and systemic change has been lacking,” she wrote in the journal Psychiatric Services in 2009. Now she adds, “When I was growing up, the only information I could find was about the biological likelihood of offspring becoming ill. That was only reinforcing my fears. It wasn’t helping me to understand and normalize my experiences.”
But as I interview Maggie I notice that her voice, so resonant, doesn’t quite fit with her appearance; something in her look that is a bit frayed, perhaps. Then we move on to her personal story, and something changes. Her voice becomes thinner, crackles, softens. The shift is so subtle that you might miss it. But sitting across a small table from her, I catch it easily. She still finds herself a little bit unraveled by the act of describing the central, defining experiences of her life.
I have felt the same shift, that sense of the ground moving under my feet, every time I begin to tell someone that my mother has schizophrenia. I recognize the quiet panic behind her resolve; the incorrigible shakiness of one’s own body in containing the mass of emotion; the phenomenal, compensatory capacity for abstract thought; and the tiredness of one who knows how hard it was to get from there to here.
Until now I have never, outside my own family, discussed mental illness with another child of schizophrenia. And as we talk, it hits me that in some way I have never witnessed before, we are breathtakingly, mind-bogglingly alike. Taking in her words, her face, her demeanor—I feel not only her story but her whole identity reaching out to me like a benediction.
The next few comments will show the email exchange that came from Marin, Rosemary and my take on what this experience between Marin and myself was about. Part of what we will talk about is whether abuse or neglect are part of the story of most Daughters and Sons.
Maggie, Marin -- thanks so much for sending me this piece. I feel I know what you're talking about -- the challenges of talking about an experience which is so intimate, that literally became part of your physical body like your skin and hair and bones because you experienced it during such a formative time of your life....
ReplyDeleteWe've seen it in the interviews we've done...it's hard to actually pin-point from the text of what someone is saying...but it's in the sound of their voice, the vacant look in their face...a sort of way of sidestepping the question we asked...or re-formulating the answer so it's less abrasive, less severe...-- and I can imagine in the child's mind the effort it takes to reconcile the need to love someone and be loved by someone when that person is angry, abusive or simply absent "a collage of neglect" (term Doug coined) ....or when experience is so unpredictable or contradictory that you, the child, are having to fabricate the coherency, the stability, you have to create the emotional core when there is none.
So I really do want to put these comments on the website because, as usual, Marin you are SO articulate about an experience that in some ways is unfathomable to those who haven't experienced it. And I admire that in you so much!!! Also it vindicates the time, effort we have put into CH and inspires us to do more, more MORE. Thanks!! rz
I feel I need to add a tiny bit about why I care about this issue so much -- someone once said that adults who became advocates for abused children either suffered abuse themselves or had an extremely stable childhood and mine was the latter -- a lovely home, good food, great opportunities to interact with books and art and theatre. My mother was pretty narcissistic but otherwise -- we had the most carefree existence possible and I've always felt every child, every child on earth, should have that degree of safety and joy....love to you both!!
Hi Rosemary,
ReplyDeleteI can understand what you are saying here and truly appreciated it. I too have known many people who have experienced abuse.
What I worry about most, though is the assumption of abuse (as you know). I would say that my grandparents (who did not have mental illness) were neglectful in my childhood, whereas my mother was not, even when she was hearing voices. I know a lot of other people who have a parent who had delusions and heard voices who did not find the parent to be abusive, but who were left entirely without resources or recognition of their needs (in medical and social service environments, within their families, and within broader mental health advocacy efforts.) We've discussed this, so I think you entirely understand my point.
I have suffered abuse, to be clear. But it was not from my any of my three parents who had mental illnesses. In fact, it is unfortunate that they had those illnesses and could not protect me. The neglect they brought was their inability to protect me from perpetrators who were in the circle of our environment.
A majority of children who have a parent with a mental illness do not suffer abuse at the hand of that parent. This part of why mental illness itself is not a cause for removal of a child. What I think is a big problem is that nothing is done UNLESS there is abuse. This leaves a majority of children without resources.
Well, those are my thoughts.
My frazzled look (I believe) also comes from the fact that so many of my family members have died and I have been living off my abundant energy for some time. Not having a place to return to has been challenging. I think that is also part of the overall story of many daughters and sons..
Hi everyone,
ReplyDeleteI'd like to add my perspective to this very fruitful conversation: I had a similar experience as Maggie in that my mother was not abusive. But I also often think of a poster I once saw that said, "Neglect is abuse in slow motion." That struck me very deeply because at the time I was just beginning to realize the severe impact of the neglect I suffered. Although my mom didn't intentionally hurt me, and although of course she never intended to neglect me, I feel fairly strongly that it's important to highlight that her neglect did considerable damage to me and my siblings. I also feel that I shouldn't minimize that neglect in order to prevent people from condemning her. I think the culture at large needs to learn that just because I was neglected doesn't mean my mom should be vilified. I want to hold both truths up at once, and not let one fall away in service of the other. I want people to understand that my health was neither more nor less important than hers.
Thanks!
Marin
If you have the experience of having a parent with a mental health experience or illness, what do you think about the dialogue above? How can we talk about sensitive topics that impact people with mental illness and daughters and sons who grow up with a parent who has a mental illness?
ReplyDeleteOk here goes. It really really sucked. Yes I must be channeling my adolescent - that is when it sucked the most because I was able to understand that something was very very wrong. My mom is mentally ill, bipolar with psychotic features. And my dad a depressive alcoholic. My childhood was full of shouting, lots of hostility emanating from my mothers disorder. And like a number of mentally ill people she was preoccupied with religion. She interpreted the Bible literally so she hit us with rods. I have a younger brother. The day I told her I hated her was most cathartic and after that day I plotted her death - my favorite fantasy was putting poison into her tea. When she would get ill and require hospitalization I would cry and write poetry about how mental illness stole my mother. I wrote a lot of poetry and drew a lot of pictures of eyes. Perhaps I wanted to be seen. I faded into the background in most settings. In elementary school I got grades for reports I didn't write. For a full year of school my gym clothes went unwashed - although my mom took the time (nocturnally) to sew my name into my gym outfit with orange thread. The other kids parents used permanent marker. My teeth rotted. I used my best friends old glasses to see the blackboard. And then there was all of the verbal abuse and other varieties of abuse. I've got PTSD written all over me. Fast forward to 2011, I'm better. COMIC (Children of Mentally Ill Consumers) Australia is doing very valuable outreach...outreach that was not around for me and probably still isn't around in the US. They try and get psych hospitals to flag the patients with children and then they do outreach: comic book handouts about having a mentally ill parent and invitations to COMIC support groups and camps. If anyone wants to brainstorm how to start this type of outreach, I’m game.
ReplyDeleteThank you, Eliza! It took a lot of courage for you to so openly share your experience and I know how heart wrenching it is to try to put words to it. You are a great leader and inspiration for this effort. I hope others will also comment and share. This is hard to discuss, but its the threshold that must be crossed in order for us to have true dialogue and progress.
ReplyDeleteDear Maggie,
ReplyDeleteWe have only just begun to share our stories with one another.
I have been attending Alanon meetings here in NYC since 1992.. and when they say that qualification for Alanon is a parent with the disease of Alcoholism.. I tell myself and the room.. that having a parent who is struggling with mental illness is.. equally traumatic and disturbing..
Surely.. those of us with parents who have struggled with mental illness are in a unique tribe..
As I told.. you my husband asked me years ago to form a tribe around the name COSMIC.. children of schizopherenic Mothers in Community.
I do not like stigma and so.. I would use the word sensitive or suffering or stigmatized.. perhaps..
In any case.. I do applaud you for your calling.
After 35 years of being a therapist in training as well as therapist for others.. I do realize that my compassion goes far.. and I have been able to give many people a happy life.. because.. I know how to love and serve and tune into the needs of others..
What has been missing for me.. is a place.. real.. and honest where I can tell the truth.. and just as an addict needs an other addict.. I realize that those of us who grew up around delusional behaviors.. terror, hallucinations,, deceptions.. and ongoing dissociation.. and whatever else we experienced and witnessed with our parents.. are also lost and lonely.. in that.. the average person.. does not want to hear what we have lived through..
How many times.. did people ignore me, judge me, not listen, try to dismiss what I was saying.. and then.. many of my teachers.. simply used my kindness and took my love an devotion.. since I did not feel worthy or able to ask for what I needed.
What can I say.?
Now.. relief?
Gratitude for a place to speak? and be real?
Maybe.. there will be a time when competition and the greed and the loneliness.. are not so prevalent in my life.
How many years have I endured being ignored and/or shamed for wanting to speak about my feelings growing up with mental illness.
I should have know.. much earlier.. that we are a unique tribe.. the children of the mentally ill. and like I have said many times..
I live in two worlds.. the one where I have empathy and love and compassion for my mother and father and brother.. and then the world that I live in with professionals.. where.. the shame and the stigma is there. if I am a therapist.. God forbid that I am also wounded and in recovery and that I speak openly about this.
Where is the love?
Usually.. around people in recovery.
Thank you for opening up a possibility for dialogue.
I am energized being able to speak to people who have some knowledge of what it feels like to live with this. and it's not from a book.
thanks for your words of truth and wisdom.