Depressed, Disconsolate and Distressed…Why??? With updates

The Scream by Pamwagg © pamela spiro wagner All rights reserved
The Scream by Pamwagg © pamela spiro wagner All rights reserved

 

I feel like screaming, I am a human being, you effers, treat me like one! But of course, that is what I would say only to one group of people, the hospital personnel who so tortured me, and not everyone does that. Though I get this sense that a lot of people treat me like I am my diagnosis and not a real HB…if you know what I mean. As soon as they know you carry some sort of MI Dx, and I do not blab about that, but they find out, esp if they know the meds I take, then they suddenly do not trust me any longer, trust that I live a life that even remotely resembles theirs. Suddenly they seem to believe that I am not like them in anything that they could possibly begin to believe in. Or worse that they cannot “get into my mind” and therefore they assume that I live in some world that they cannot possibly comprehend either…

Weirdly enough, I live assuming the precise opposite, that our worlds are pretty much the same, that what I think, they pretty much think. I assume that whatever differences there may be, they are very small when it comes right down to it, and that they are miniscule in the larger plan. So it hauls me up short when I realize that they believe they cannot understand me. And are afraid of me and do not want to try to get to know me, because of that fear. And it makes me feel VERY MUCH ALONE.

 

You who are married or have relationships or have had them in the past, you do not know how lucky you are. I never have. I have never loved anyone, nor felt that I was safe with someone and not going to be abused or taken advantage or or simply that I was with a person I loved and was loved by and was their first priority. Not someone who was my peer. Yes, for 7 years I was, I think, my father’s priority, maybe his first priority, I dunno. I felt cared about and loved. But he was my father and he owed that to me. I ought to have felt that way all my life. All children should feel loved and cared for by their parents…no matter what.

 

I feel so alone, so alone. I do not know who to turn to or who to talk to. I do not know what to do or how to stop this juggernaut from sliding down into the abyss, taking me with it . It started with the headache all week, which went away yesterday but came back with a vengeance again today! I feel like no one in my family cares about me or even likes me except perhaps my brother, and he may do so on sufferance, I dunno. I do not trust anyone…

 

How can I? I have been so broken by people who said they cared about me and wanted to help me and then tortured me (hospitals) or abandoned me (my father) that I have no reason to trust or love…I do love my family, mind you. I even like them all. But it doesn’t even matter to them whether I love or like them, my like and love are meaningless to them, worse they are burdensome to them.

 

I sense that this is often the case, and it is why I have never bestowed my love on anyone: people do not want my love, not my real undying love. They would fear it and hate it. It would be a huge burden on them. So I haven’t burdened anyone in the world with my love ever. Because I would never do anything so evil to anyone, not even my worst enemy…though I do try to practice love thy enemy, as I have said, and I try to make my enemies my best friends. Nevertheless, I would not in fact give my enemy the worst burden of all, the loathsomeness of my heart. Who could stand it, who could tolerate it? I would rather die than think that I had so oppressed any person with something so intolerable.

 

But oh, how I cry to think that I am so loathsome, and why is it? Who and what am I that I am so disgusting? Why did I turn out this way? I always tried to do good, and to do it secretly so no one would be embarrassed or have to thank me…and now what am I but a disgusting turd who only oppresses the world with her presence. Whose love and heart would only horrify the person to whom she gave it…Not that I would dare do so, but that is because I understand the horror of such a gift-curse.

 

How did this happen? What happened? It will never change, I know that. It is a fact of my existence, of Existence itself. My father cared about me, but he also know how burdensome I was…He was glad to die and leave me, I think. Or perhaps he could handle my loathsomeness because he didn’t have to deal with me much…Who knows. All I know is that I am alone, alone, alone…and I will never be anything but alone. How can I go on, knowing that? Oh, I will. I will go on. But how do you? Faking it, always, pretending to people that all is fine and dandy, because no one wants to know how awful things are, NO ONE. If they did, it would only be another intolerable burden…

So you fake it and smile and go on…That is all anyone can do, right? Stiff lower lip and square your shoulders and pretend it is okay. Because you have to have people like you, or smile at you…or you will die. And unless you want to die and you do not, you need those fake smiles back at you for food to relieve the loneliness that nothing and no one will ever fill.

____________________________________

Sorry about this post, but i had to write it. I had to get it off my chest or I would have cried all evening. I promise I am working on the Liebster Aware, slowly but surely. I still need to get all the 11 blogs in order, and the questions written, but I plan to do that on the train to NC on Wed. Perhaps I will have it all done by the time i am back on the 17th. My apologies for the self-pity in this post. I try not to sit there, but I cannot always keep my head above water, or my arse off that pot. I’ll try to do better. But if I cannot be honest here, then I won’t continue to write. It isn’t worth it to lie here and have to lie about how I feel everywhere else as well. Okay?

 

Thank you for listening, if you did. Thank you from the bottom of my impoverished, dried up, lonely old heart.

 

Pam W

I wanted to add certain comments that were particularly to the point. Here is one or two from Lady Quixote:Dear Pam,
I liked this post, although I hate that you are in such pain, I like the honesty, I applaud the bravery, very very much. And oh yes I do understand, I relate with all my being, to virtually every word you wrote in this post, and in these your comments, too. Both comments.

As I’ve told you, I am writing a memoir about my similar history. I’ve changed the working title on my book a few times: From Here To Insanity, Healing From Broken, Growing Up Crazy, and some others. The working title I have now is my favorite. I’m now calling my book GOING CRAZY, a memoir of horror, hope, and healing.

The pain, the loneliness, the “shame” and isolation of having a been labeled Mentally Ill…. the label is a curse that hurts as much, if not more, than the disorder itself.

Here are the words I have on the cover of my memoir-in-progress, words that echo this post to the marrow of my bones. I have this on the front cover:
Mental illness seems to run in my family. (So does Protestantism and the tendency to vote Republican.) What causes mental illness: nature, nurture, or a combination of things? After a series of traumatic events, I had a “breakdown” at age 14 and was put in an insane asylum for 2 years. For the past 4 decades I have tried to forget my allegedly schizophrenic episode. But when I learned—in the midst of a family crises—that my first great-grandchild was on the way, I embarked on a Madness Marathon in search of answers.

And this is on my back cover:
Was I Cured of Schizophrenia? Do I Have “Complex” Post-Traumatic Stress Disorder?

MY MIND WAS BROKEN—DOES THE “LABEL” MATTER?

The extreme childhood trauma that caused my mind to shatter was painful. Being diagnosed with schizophrenia at age fourteen and placed in a state insane asylum for almost two years was even more painful.

But my most damaging experience by far has been the shame and isolation I’ve lived with for over forty years, caused by the demoralizing stigma of having been labeled “mentally ill.”

For most of my life I’ve tried to hide my history. Now I’m telling my story to help transform the hurtful prejudice borne of ignorance, into the healing mindset of understanding and compassion. Having recently become a great-grandmother, I feel compelled to write my memoir as a legacy of truth and enlightenment for my adult children and grandchildren, who have suffered so unfairly as a result of my emotional wounds. I am also sharing my story for anyone with a background similar to mine, to let you know you’re not alone.
………………………..
I’m sending you love and hugs and compassion in my heart and mind right now. I hear you. Loud and clear. I have stopped communicating with a sister who refused to honor my request to please stop passing messages on the me from our mother, particularly the “tell Lynda I love her” messages. NO, my mother does not love me. Her actions have proven it over and over and over again. I told my youngest sister: “I’m not asking you to agree with me or believe me, I’m not asking you to take sides. We can agree to disagree about whether or not our mother loves me, that’s OK with me. All I ask is that you please stop telling me that she does.” My sister said nothing, no response of any kind to my request. Then a few weeks later she posted right on my Facebook wall, on Christmas Eve of 2012: “Merry Christmas Big Sis, and Mom says to tell you how much she loves you.” I deleted that message off my wall, and my sister then deleted her account… so I deleted my account, for over a year, only coming back to FB a couple of months ago to keep up with my grandchildren.

I think we know when we are not loved, when we are not wanted, considered an embarrassment and a burden. I have grown nieces who do not know me, but they would post rude things on Facebook about me because I was locked up in an institution and diagnosed with schizophrenia 46 years ago. I was released from that place 44 years ago. I have had numerous doctors and therapists over the years tell me that I was misdiagnosed, I had PTSD or something else. But in my family of origin’s eyes, all but a couple of my relatives still treat me like the embarrassing crazy lady…. it HURTS. Yes it does. It EFFING HURTS. Worse than the pain and horror of “going crazy” in the first place. You SEE it in their eyes, you HEAR it in their words, their tone of voice, you DISCERN it in their body language, that “jumpiness” that 99% of the people get when you tell them, or they otherwise find out, about your MI Dx. It’s like a mask comes down over their face…. and you feel that ARCTIC CHILL, the deep-freeze of being frozen out.

Also, Pam, in a marriage the loneliness and the judgments, the raised eyebrows, the rolled eyes, the heavy sighs, the thoughtless comments, such as my now EX husband made to the intake nurse at Johns Hopkins University Hospital Psychiatric unit, where I had gone voluntarily hoping for HELP with my then-intractable depression. In describing the harrowing traffic in the streets of Baltimore as he had driven me to the hospital that day, my now EX quipped: “The traffic was so bad, I thought *I* was going to go crazy, HAHAHA.”

NOW I am lucky, NOW I am married to a man with severe chronic PTSD from Vietnam combat, a man who has spent time as a patient on a psych ward, so he UNDERSTANDS and does not hold himself above me or apart from me.

I’ve said it before, I’ll say it again and again and again until I die: The CURE for all types of mental illness labels must begin with CARE: Compassion, Acceptance, Respect, and Encouragement. Everything that is the opposite of the shunning, the subtle cold shoulder, the jumpiness that we can SEE and FEEL and HEAR because, yes, dammit, we may have a screw loose here or there, but we are not stupid, deaf, or blind.

And this:
Oh no, I just went back and reread my comment, and it’s full of typos. So sorry, I was writing in my emotional part of my brain, not in the editing part. Also I put that the message that made me go off FB for over a year was posted Christmas Eve of 2012. Obviously that’s wrong, it was 2011.

Brenda, I wanted to tell you that I appreciate the things you wrote, too, particularly the part about our need to be kind and loving to ourselves. So true. It’s also very true, what you said about hospitals being an unnatural setting, and that we cannot read minds, and there may be times when we are mistaken in thinking that certain people do not really like or love us. I do believe that is also true. However, that jumpy feeling you so honestly said you feel when you discover that someone has an MI Dx,,,, thank you for being so honest, and yes, that is an all-too-typical response, and it is THAT RESPONSE, that involuntary attitude of the general public toward people with certain mental illness diagnosis, that jumpy reaction is very easy to discern. And it may be involuntary and unintentional and even understandable, thanks in large part to how the media portrays people with serious MI labels, BUT.IT.HURTS, when YOU are the one being looked at and talked to like you are a freak, the boogie man, a strange and unpredictable creature from another dimension.

I am lucky to finally have my “certifiable” husband, whom I did not meet and marry until we were both in our 50s, and our sweet fur-baby Cattle Dog, who doesn’t know a thing about Mental Illnesses and couldn’t care less, so long as we feed and water and walk her and give her lots of back rubs. I worry about you, Pam, feeling so alone. Loneliness is a soul killer. I know, for I have spent the vast majority of my life feelings just as alone as you describe in this post, yes, even when I was married. In my experience, there is nothing more lonely than being married to someone who talks down to you and treats you like the worst of the personnel in the psych hospitals treated you. I don’t know why a man who looks down on the mentally ill would even want to marry me in the first place, when I had not ever hidden that part of my history from a potential husband. I can only surmise, based on how I was treated, that a man like that is looking for a woman he can control and verbally and even sometimes physically abuse, cheat on her and do whatever the heck he wants when he wants, and feel all justified about it and superior to her because, after all, his wife is “crazy.” I would rather live all alone under a bridge and eat out of garbage cans, to ever be in a marriage like that again!

Note to Lynda from pam: i looked and looked but just could not find any typos to correct for you…sorry. The date part i let you correct in your note, but the spelling typos just do not exist so far as i know or even that spellcheck can see. I know that there could be homonyms that were misspelled, but i did not detect any of those either. So there! 8) thanks for your brilliant addendum!

22 thoughts on “Depressed, Disconsolate and Distressed…Why??? With updates”

  1. I guess, if I share my experiences and how I learned from them, sincerely – without any kind of agenda – just being open in a very public place and therefore feeling pretty vulnerable – and still this comes across as “preaching” or patronizing, then it’s probably best I stop commenting here. I really thought I had something of value to share, but I don’t feel respected and I feel confused by the intensity of the backlash and I no longer feel safe sharing my experiences or feelings.

  2. Brenda, our wonderful Pam informed me via email that your reply to my last comment was very terrific and she advised me to read it. Pam said she thinks that I misunderstood you.

    First, I need to tell you that I am very deeply sorry for being snarky… bitchy… over-sensitive… touchy. I was having a Bad Lynda Day. Some people have Bad Hair Days. I have those, too, but Bad Lynda Days are the bane of my existence.

    Now that I have read your comment as Pam suggested that I do, I do not feel so much that I misunderstood you, as that perhaps I am being misunderstood. The tone that keeps coming across to me in your comments, Brenda…. and please PLEASE forgive me if I am mistaken… but the tone that keeps coming across is: Preachiness. I feel like I, and Pam, too, in your initial comments to her, are being talked down to a bit, and preached at a lot. As if we are too nuts or too immature to understand things like: 1. We can’t read people’s minds, or 2. Forgiveness is a good thing, or 3. Our parents were just human being doing the best they could with what they had…..

    I cannot speak for Pam, I can obviously only speak for myself — but when I get the sense that someone, anyone, is “talking down to me” or “preaching at me” or telling me “how to be, how to think, how to feel” because he or she “knows best” and I obviously do not know best, else my life would be in far better shape than it is…. I…. BRISTLE. It seems to me that a majorty of self-respecting adults do bristle when they get the sense that someone is preaching at them and talking down to them and in the process, telling them things that they — hello — ALREADY KNOW and ALREADY HAVE PUT INTO PRACTICE in their life.

    In my view, just because someone is having a bad day or even a bad week, this does not mean that they to not know ANYTHING AT ALL about how to handle their emotions, and how to think. I already know the things that you are saying in your comments, Brenda. What makes you think I do not? I am 60 years old and my mensa IQ is one of their highest scores ever. ALSO, you should SEE my self-help therapeutic and spiritual library! The ideas that you are expressing in your comments are anything but new to me. One of my all-time favorite books is MAN’S SEARCH FOR MEANING, by Viktor E. Frankl, M.D, PhD., holocaust survivor and MY HERO. I quote from him all the time, in fact I have one of his quotes on my the front cover that I designed for the memoir I am currently writing. I have two quotes on my book cover design. The first one is Frankl’s “An abnormal reaction to an abnormal situation is normal behavior.” The second quote, of which I am intensely fond, is Helen Keller’s “The world is full of suffering, but it is also full of the overcoming of it.”

    You see, Brenda, when I say that I believe in listening compassionately to people who are hurting, and in validating their pain, and in doing what the Bible says Jesus did at Lazarus’s tomb, which is to “Weep with those who weep,” rather than reacting like my minister father and Bible thumping abusive mother would do, which was to jump right on you with admonitions of “where is your faith” and “count your blessings” and “look on the bright side” and “stop crying or I’ll give you something to cry about” and “other people have it far worse than you and yet they manage so much better than you” — whether dressed up in a polly-anna like sermonette or not, it still strikes me as… well… if not emotionally abusive, at least emotionally insensitive.

    I once attended a church where one of the parishioners was an 18-year-old who worked the third shift all by herself in a 24-hour convenience store. As I recall, just TWO DAYS after she was robbed, raped, and stabbed, with the encouragement of the elders and the preacher who were all about “immediately offer forgiveness to everyone, regardless of what they have done and whether or not they have — hello — REPENTED” and “count it all joy…” this young got up on the stage at the front of the church and told us that she loved her attacker in the name of Jesus and she forgave him already and… she looked like she was about to SHATTER. These things are a process, in my experience. FIRST we NEED to feel the GOD-GIVEN NORMAL EMOTIONS of PAIN, ANGER, etc…. then, THEN as we get on our FACE before our Creator and pour out our hearts, the God that I believe in and worship, COMFORTS ME… UNDERSTANDS ME… LOVES ME… and in His time and in His way, HE gives me the grace, and the ability, to work through my pain and my anger and my fear and to find the place of PEACE, LOVE, FORGIVENESS.

    These things, I believe, we cannot do in our own fleshy strength. I can only do what my Creator enables me to do, as I turn my will and my life over to HIM. On my own I am nothing, in Him I have all that I need.

    It’s the difference between fleshly striving, and abiding in the vine and trusting in GRACE.

    By the way, on the back cover design of my GOING CRAZY memoir, I have these words, which I came up with on my own, with my Creator’s help: MOST PEOPLE do the best they can with what they have. My story isn’t about hate and blame, it’s about broken people living in a broken world.

    I also have on the back cover of my book, these words that I also coined, which to me sums up my entire philosophy when it comes to Mental Illness: I believe the CURE for mental illness must begin with CARE Compassion, Acceptance, Respect, and Encouragement.

    This is what I am not feeling from your comments. I don’t feel the compassion, I don’t feel the acceptance, I don’t feel the respect. I DO feel the encouragement, yes, the encouragement that, to me, says — and rightfully so — NO ONE IS HOPELESS. I believe with all of my heart that no one is too far gone or too crazy to be helped or even cured. Too many people seem to think that schizophrenia, for example, is hopeless — it most certainly is not!

    Years ago I wrote a song, I call it my “Optimistic Blues” song. It goes like this:

    Troubles come, and troubles go… that’s just the way this old life is, you know
    but I’ve got a feeling, a beautiful feeling, everything will be all right.
    First you’re up and then you’re down
    sometimes you feel like you’re all turned around
    but I’ve got a feeling, a beautiful feeling, everything will be all right.
    God’s in His heaven up above
    He’s sending His message on the wings of His love
    to all of His children here below
    and there’s no better way, I know!
    I’ve got you, Babe, and you’ve got me
    together we make a happy family, ’cause
    I’ve got a feeling, a beautiful feeling, everything will be all right —
    Your love’s got me reeling with beautiful feelings
    and everything will be all right!

    That is my philosophy right there, in a nut shell. Jesus said: “In this world you will have tribulations.” He wasn’t kidding! He also said “Be of good cheer, for I have overcome the world,” and: “My grace is sufficient for you.” But in that same Bible that I believe in, it says to weep with those who weep, and that Jesus Himself wept.

    In the garden of Gethsamene, the night before Christ was arrested, He wept and His sorrow was so great, His tears fell like drops of blood. He asked His disciples to watch with Him and they did not, they fell asleep. He needed the comfort of their loving prescence as He wept… I dare say He needed His friends to weep with Him, but they did not. As he hung on the cross, the heartless ones were having a party, casting lots for His garments. But those who LOVED the Lord, wept and grieved. No one was dancing and saying, “Well it’s OK, haven’t you read the book, in the end it all comes out for the good, God is using this event for our ullitmate good, let us rejoice, let us forgive those who have beaten, mocked, and crucified the Lord…” No, Jesus Himself prayed “FATHER, FORGIVE THEM, FOR THEY KNOW NOT WHAT THEY DO.” But He did NOT pray, or say, “I FORGIVE YOU ALL FOR DOING THIS TO ME.” I think that is significant..

    There is a time and a place and a season for everything. That has been my belabored point all along. There IS a time to grieve, there IS a time to weep and mourn, there IS a time to weep with those who weep. Job’s friends worst mistake, in my opinion, was timing… and attitude. They jumped the gun. They needed to weep and grieve and commiserate with their friend. As for their attitude… where is the compassion in preaching at somebody who is down, as though you know it all and the only reason he or she is down is because he is doing something WRONG?

    When my heart is crushed, the last thing I need is for someone to presume to tell me how others have been crushed even worse than me, and yet they have done so much with their lives!

    I do not mean to be snarky or bitchy, I really truly don’t, I just…. am trying very very hard to get something across that I don’t know how to fully explain, I guess. You have overcome an amazing amount. So has Pam. So have I. You obviously know a lot about life and about overcoming. So does Pam. So do I.

    Lord… at times like this all I know how to say is: “All I know is Christ, and Him crucified.”

    My apologies to Pam and to others who do not believe as I or as Brenda does. I was staunchly agnostic, borderline atheist, for many years, and only came back to being a Christian Believer 10 years ago, just before I turned 50. I have the utmost respect for those whose religion, or lack thereof, is different from mine.

  3. I am sorry Lynda won’t get to see this, but I want to say it was never my intent to invalidate anyone’s experiences or trivialize anyone’s pain. I am guessing that the topic of religion is a tender one, and it’s always walking on thin ice to comment on someone else’s childhood.

    But I do stand by what I wrote and I do believe that it is possible to forgive those who harmed us without — and this is the key — without excusing what they did. This can be something deeply difficult to accept.

    It also can be painful to step back and view our (abusive) parents as individuals who also suffer from torment and thereby get past our own hurting inner-child to a new place where we can feel compassion for those broken people, as well. I believe it is crucial to do so, however, or we remain lost in the dark….

    I also stand by what I believe, that we can look to others who have done this under the most horrible of circumstances, such as the Holocaust survivors, and be hopeful about our own ability one day to move beyond bitterness, despair, rage, being “broken” or brittle, and find joy in that release. This doesn’t have to have anything to do with your particular religion – you don’t even have to have any faith in the traditional sense. It’s really just about being a human being.

    I once interviewed a man who had been held as a hostage in Iran for 5 years who told me he not only forgave his captors but went back to that country to see one of them. I burst out crying and said, “I would never, never forgive someone who stole five years of my life!” And he said, “They took 5 years of my life – why would I give them the rest?” Again, these are words that helped haul me out of my own captivity.

    It would be “crazy” to expect each of us to view our world(s) through the same eyes, so while I am sorry that what I wrote was taken as a kind of brush-off, I do stand by my own experiences and the insights they’ve given me and that I hope will help others by sharing them.

  4. Holy kamoly, brenda, as my visiting nurse would say. Mayn i post this one too? This is unbelievably moving and amazing stuff….

    Pamela Spiro Wagner: Artist, poet, author of Divided Minds: Twin Sisters and their Journey through Schizophrenia (St Martins Press, 2005) and We Mad Climb Shaky Ladders (CavanKerry Press, 2009). Available for readings, speaking on mental health issues, and sales/donations of her art. Please contact for details by email or skype phone: 860-263-0280 Check out http://pamelaspirowagner.com for links to Wagner’s art and poetry. Her art site for now is https://pamwagg.see.me

  5. Wow…here, here. Brenda, that was amazing.

    Pamela Spiro Wagner: Artist, poet, author of Divided Minds: Twin Sisters and their Journey through Schizophrenia (St Martins Press, 2005) and We Mad Climb Shaky Ladders (CavanKerry Press, 2009). Available for readings, speaking on mental health issues, and sales/donations of her art. Please contact for details by email or skype phone: 860-263-0280 Check out http://pamelaspirowagner.com for links to Wagner’s art and poetry. Her art site for now is https://pamwagg.see.me

  6. Forgive me, dear Pam, if my comments are unacceptable to you for any reason. Feel free to delete my comments if you wish, I promise not to be offended. This YOUR blog and I want what is best for YOU. I am deeply grieved that you have been hurting so much lately, and the last thing I want is to add to your hurt in any way, by being snarky or whatever. I am now going to cease writing and I shall also cease reading comments on this particular blog post. I believe I have said more than enough here already, and if I read any more comments here I may be tempted to answer, so I will unfollow this post.

    I love you, Pam. You’re like the sister I always wanted. You have a heart of gold.

  7. John 11:35 Jesus wept.
    Romans 12:15 Rejoice with those who rejoice, and weep with those who weep.

    I have never been comforted by anyone telling me that I ought not to be feeling the pain I am feeling, because I am not a mind reader, or because of whatever reason. I am only comforted by those who listen compassionately to my pain, validate that my pain hurts, and who care enough about my hurt to weep with me.

    I have also never been comforted by being told stories of how other people have gone through as bad as I and even much worse, and yet they have come out so much better despite or because of their suffering.

    When I am hurting, weeping, mourning, the last thing that I need or want is someone who, like Job’s friends, tells me how I ought to feel, or how I ought not to feel, or how other people have done so much better than I am doing despite going through so much worse.

    I am deeply grateful that my close friends, my best-friend-husband, and most of all, the Higher Power I believe in, whom I call my Lord and Savior Jesus Christ, weeps with me when I weep.

    Someplace in the old testament there is a verse that says in effect that God our Creator saves all of our tears in a jar. WOW!

    My mother used to tell us kids to “stop that crying or I will give you something to cry about.” I tend to get jumpy when people tell me, in so many words, why my tears or my pain is all wrong.

    Lynda, aka Lady Quixote

  8. Hi Lynda – it is good to know your name!

    What you tell us about your dad is pretty powerful stuff. I’ve sometimes wondered if what gets a clinical label, such as “multiple personality disorder” can sometimes, in fact, be possession and that there in fact are demons.

    I also think that “madness” is sometimes the product of a divine experience that the person cannot process and it gets distorted into delusions such as someone who claims to be Jesus. I think there’s so much we really don’t know about the universe we live in.

    It also sounds like your mother suffered/suffers from profound mental instability herself. Wow.

    Growing up with parents like these — talk about the awful anvil of God! And yes, I certainly understand a certain “jumpiness” about religious talk when you have a parent using that to hurt you and push you away.

    I agree with you, too, that suffering shouldn’t be sugar coated. I also feel, based on my experience, that some of the horrifying shit that happens to us does yield unforeseen treasure or a whole new path in life.

    We’ve all heard stories about people who’ve suffered something we feel would have destroyed us – i.e. their child is murdered – and somehow, in some mind-blowing way, they come through this as a happier, more whole person. I remember a woman whose son was murdered, who visited her son’s killer in jail — both boys were in their teens when it happened — to offer him forgiveness and who ended up befriending him. What courage! In so doing, I believe she saved three lives – his, hers and her son’s, as far as giving his death some kind of meaning.

    I think one of the most profound examples of not just surviving but reviving after unspeakable suffering was shown to me when I was a college student at the University of Connecticut, where one of my work-study jobs was transcribing interviews with holocaust survivors. It became apparent to me, after typing up dozens of these gut-wrenching memoirs, that the one’s who went on to live lives of JOY were the ones who didn’t define themselves by their experience, or the label giving to it. They weren’t holocaust survivors, they were many things. As one interviewee put it (words to this effect), “I had a life before the holocaust and I am now living my life after the holocaust – I am not that one part of my life.”

    Also, it seemed that there were some survivors who never left the camps — in their minds and hearts — and were consumed with bitterness, so that they could never go forward in their lives and make friends, enjoy grandchildren, be grateful for anything in their lives. While others drank in life and were so grateful for their freedom, their friendships, their work. One interviewee said that what kept her alive during so much horror was she kept thinking about what life would be like when she was free again. Others who couldn’t do that, she said, just withered away and died. I have often asked myself which one of these people I would have been.

    For so many years, I was consumed with bitterness over the brutality of my childhood. One day, during a session with a really remarkable therapist I stumbled across at school, she suggested we role play. She would be me and I would be my mother and she would say to me everything I’d wanted to say to my mother — at this point, she had a pretty good idea. We really got into it, yelling at the top of our lungs — people actually tried to look into the louvered window, we were in a room below ground level. At one point, I did what my mother would have done, which is to shout, “I don’t have to listen to this! You’re crazy! I’m leaving!” and I started to walk out. My therapist grabbed me and threw me back into my chair, at which point we realized we’d gotten carried away!

    After this pretty cathartic exercise, I realized that this kind of confrontation would never do anything to resolve my relationship with my mother. But what really hit me was when my therapist said, “You know, Brenda, you can forgive someone without excusing them.” I’m not sure why, but that was a huge AHA moment. I literally felt a huge weight lift off my chest. And even weirder, the next time I saw my mother, she even looked physically different to me. She was small and thin and I could see her own fear on her face — fear of me! I was stunned.

    My mother is the product of a lot of awful shit that happened to her. My father also was the product of a lot of terrible shit that happened to him. While these people certainly harmed me, I came to see that they were two broken people — people who NEVER should have had children. And I was finally able to forgive them — but without minimizing or in any way sugar coating what they did to me physically, emotionally and psychologically.

    In the end, forgiving them also finally allowed me to BREATHE. And it became part of the process I described in a previous post of finally being able to reach out to other people and allow them to connect with me. How lucky I was to have just bumped into this therapist — or maybe someone would say God, or the Universe, or my Higher Power, or the Angels, or? — led me to her. But I am so grateful to this very day…

  9. I am so relieved that Pam posted. YAY!

    Pam, I am in awe of you. How kind and caring and selfless you are, even when you are going through hell. To be so concerned about the well-being of someone else, that is awesome.

    NOW that my mind is at ease about Pam, I can put the computer away for at least a couple of days while I try to whip my thoroughly messy/dirty house into shape before my 32-year-old son and his fiancée of 10 years and her 15-year-old daughter get here. They lost their home in Pennsylvania and have no where to go but home to Mama… which, all things considered, is a huge indication of how utterly desperate they are. My goal and determination is to make their indefinite stay with us as comfortable and loving and peaceful as I can. So… by for now.

    Lynda/Lady Quixote

  10. Pam, I just want to wish you safe travels and a fabulous time in NC. You deserve to be very happy because you are so talented, so generous, so gorgeous, and so true. Cast your troubles aside and enjoy yourself, okay?

  11. Jeeze, brenda…i’m sorry. I had no idea! Of course i didnt know your history… And like i said, jeeze…it is hard to know what to say to all that. I will write more on wed on the train…i think that will give me more time to think.

    It has been a hard day here. Just started doing email and blog at bedtime. It is after midnight. I have to get up early…yes, indeed, always feel free to comment as much as you want to. Thats the point. In fact, i am still looking for guest or co- writers but no one i invited took me up on my offer…dunno whether or not they got the invites… But any time you would like to post something here, i would be honored to do so…

    Just let me know.

    My best to you,

    Pam

    More on wednesday.

    Pamela Spiro Wagner: Artist, poet, author of Divided Minds: Twin Sisters and their Journey through Schizophrenia (St Martins Press, 2005) and We Mad Climb Shaky Ladders (CavanKerry Press, 2009). Available for readings, speaking on mental health issues, and sales/donations of her art. Please contact for details by email or skype phone: 860-263-0280 Check out http://pamelaspirowagner.com for links to Wagner’s art and poetry. Her art site for now is https://pamwagg.see.me

  12. I’m worried about Pam. Where are you, Pam? How are you?

    Brenda, I am Lynda, aka Lady Quixote. Faith can be a huge help in negotiating the trials and tribulations of life, I know this. But I have struggled with the faith thing for most of my life, for reasons similar to the ones you gave about why you get jumpy when you learn that someone has a serious mental illness diagnosis. My dad was a minister. When I was 12, my preacher-father was arrested for coming so close to murdering my mother that I had thought she was dead. He was in very bad shape when the sheriff found him, so my dad was taken to a hospital where he was diagnosed with Multiple Personality Disorder. Then my mother, who was left with 5 children, 4 of whom were preschoolers, decided that the answer to all our problems, after our house was foreclosed on, was to gas us all to death. This same mother has been highly abusive to me my whole life, and yet she has sent me many letters filled with nothing but handwritten Bible verses, and other letters, one as long as 50 pages, and the last one 2 years ago, was 62 pages, and in those letters she detailed every fault and every wrong I have ever done in my entire life, many of which were imaginary projections on her part, or things taken totally out of context, one-sided, and blown way out of proportion — in no situation did my mother ever give me the benefit of any doubt — and at the end of the 50 and 60+ pages of pure HATEFULNESS and VERBAL ABUSE, my saintly mother points out that if I do not wish to spend eternity in HELL for all my many wrong-doings, all I have to do is repent…

    Well. Thanks to all that, I was staunchly agnostic for many years. But in 2003, shortly before my 50th birthday, I became a Christian believer, and yes I did repent of all my sins. However, after all that I have gone through in my life — by the way, my dad the minister with the multiple personality told me he was actually demon possessed — after all that, I have more questions and doubts than blind faith.

    I find that humor gets me through the rough times, more than anything. Your talk about the anvil made me think of that popular saying: That which does not kill me makes me stronger. My answer to that one is: That which does not kill me makes me GRUMPIER.

    In that same vein, when people say that God will never give us more than we can bear, I say that is nonsense: when we have been given more than we can bear, we either go insane, or we die.

    HOWEVER: I still do believe in God, I believe that God is good, and that God is love. I have no clue as to what in this world God allows for our own ultimate good, or what may happen simply because we are broken people living in a broken world. Like my precious Aunt says, who lost her only daughter 2 years ago this month, when my cousin drowned….. OH how I miss her!!… my aunt says: “I thank God for the good things in life, but I do not blame Him for the bad.” Wow.

    One of my favorite Bible verses is: “Jesus wept.” If the Bible is truly God’s word, and if Jesus truly was God in the flesh — that means that God Wept. At the tomb of Lazarus, when he saw all the mourners, He wept. Even knowing that within a few minutes He would be raising Lazarus from the dead, and knowing that death is temporary in any case, still our Lord WEPT!!! That tells me that God grieves for our pain. He does not say, “Take that, you deserve it!” He does not say, “Oh stop crying you big babies, where is your faith in eternal life? Where is your faith that I am working all things together for your good?” No sir, no ma’am, HE WEPT. That comforts me. I believe that when I am hurting, when I am grieved, when I am done wrong, when life sucks the really big one, I don’t have to put on a Polly Anna face and say “Oh it’s OK, God is doing something GOOD in me.” I can grieve, I can hurt, I can moan, I can cry… and in my mind as I pray I believe my loving heavenly Father is crying right along with me, the way I used to cry with my kids when they skinned their knees.

    Sometimes life is really crappy. Maybe some good will come out of the crap eventually — I think it often does happen that way. But when I’m in the crap, I don’t usually feel so great. I have hope for a better day, though, always. I’ve been to the depths of despair, truly I have. Two years in an insane asylum as a teenage girl! That was hell on earth. That part of my life ended over 40 years ago, but I am still wounded by it, I do not (yet) feel strengthened or made better by it. With this exception: I have a whole lot more compassion than I believe I would have had if I had not gone through so much hell.

    And I am worried sick about our Pam…..

  13. In response to I am Lady Quixote who wrote: “Brenda, you have been through an incredible amount of horror and trauma in your life. And yet your write with such clarity. I am amazed by you.”

    One of my favorite expressions refers to the “awful anvil of God.” It has to do with becoming tempered metal or being refined to your essence by pain and suffering. I think that most of us – if deep down we actually love life – when hammered on the awful anvil of God will get clearer, for example, about what’s important in life.

    I think writing also keeps me from cracking into little pieces on the awful anvil of God.

    Also, I recently read a book about how the most painful parts of our childhoods actually can be what sets us up to express our gifts – I think the book’s title has the word “acorn” in it.

    So, for example, the author describes a famous bullfighter who was neglected by his parents, and was bullied by other kids because he was petite. He reacted by becoming someone who relied on his own instincts, pursued his own goals and taught himself to confront anything that frightened him.

    I do believe, though, that kids brought up in a healthy environment also can grow up to be outstanding in their field – so it’s not necessary to go through hell – but being hammered on the awful anvil of God can also shape someone remarkable.

  14. Brenda, you have been through an incredible amount of horror and trauma in your life. And yet your write with such clarity. I am amazed by you.

  15. Hi Pam – I’d like to respond to you about whether I’d get “jumpy” about different kinds of diagnoses – and don’t worry about hurting my feelings, I’m OK.

    First, I’d like to tell you a little bit about me and my issues and my family history, so you might understand that my “jumpy” feeling probably isn’t just the typical knee-jerk reaction to someone telling me they’re on medication for schizophrenia or bipolar disorder or OCD or other “mental illness.”

    First of all, I’ve suffered from depression probably since I was 8 years old (I am now 59), which is when I first contemplated suicide (I made 2 attempts later, at 13 and 19). I didn’t realize I was suffering from depression — I just thought I was a loser and life was shit — until I was diagnosed at 40 as having Attention Deficit Disorder, and the medication for depression also alleviated a lot of the ADD symptoms. And part of what the medication did for me is that I was finally able to truly connect with – and to a limited extent – trust other people, which included 75 percent believing someone who said (and acted as if) he or she loved me, really did. I started a whole new life, although I still have plenty of work to do.

    Second, I’d liked to share that my father suffered from something that was never diagnosed, maybe something like Post Traumatic Stress and probably depression – both because he was put in an orphanage by his family because they couldn’t afford to raise him (there were 11 other kids) — who knew you could do something like that? — and then brought home when he was 16 so he could work and help pay the household expenses… very effed up, if you ask me. And who knows what happened to him in the orphanage; we’ve all heard the stories.

    He also was the product of an affair between my Native American grandfather and a black woman – something I only found out a couple of years ago – and apparently he was ashamed of this. My father drank heavily and by the time I was born was a raging alcoholic who abused me and beat my mother, me and later my little brother. When I was 8, he shot himself.

    My mother, who married him at 18 and for all the wrong reasons (i.e. he was in uniform), turns out to be the poster child for ADD, but who knew back then?

    Because of the chaos and violence, my mother also was physically and verbally abusive toward her children. My brother also suffers from ADD as it turns out and grew up to be a “functioning alcoholic” who nevertheless has managed to achieve a lot in his life – a 25-year career as a firefighter, a well-respected officer in the National Guard, and a pretty decent father to two boys – and he’s still married after 25-plus years. I wish he’d stop drinking because now he’s diabetic, but I finally stopped trying to save him.

    I don’t know too much about the health history of my father’s family because my mother severed our relationship with them after his suicide.

    On my mother’s side, however, I have a cousin who was diagnosed as schizophrenic when she was about 30, her father (my uncle) was a very successful architect who also suffered from severe depression (he’d sometimes be found sitting on the roof in the middle of the night). Another cousin (sister to the one mentioned above) was a heroin addict who recovered and joined a “born again” church. My uncle recently died of Alzheimer’s. My mother’s father was an alcoholic, abandoned the family when my mother was a teenager, and later killed himself. My mother had an older brother who also killed himself in his 20s- he was in the Navy and jumped off the ship in the middle of the ocean.

    So, why tell you all this? I guess in part it’s to say that with all the erratic and violent behavior I grew up with, anything that suggests more of the same makes me “jumpy.”

    Once I began dealing with my own imbalances, I made it a point of gravitating to people who seemed to be stable, generally happy with their lives, were outgoing and loving — I guess trying to tilt the balance in the other direction — and I am truly, truly blessed to have about a half dozen such people in my life, including my current boyfriend/partner.

    Besides years with different therapists – some good, some quacks – I spent 5 years going to Co-Dependent Anonymous meetings to learn how to be vulnerable with (selected) people while still establishing boundaries. I also learned to actually identify individual emotions – versus the general roar of chaotic emotions I’d been living with – and find the courage to FEEL and name each one, so that they lost their power over me. As a result, I got better at choosing healthy relationships. (By the way, I was in a one-year relationship with a man with bipolar disorder, who wasn’t takings meds or getting any treatment, and finally ended it because I was going down the rabbit hole with him.)

    In the end, given all this, I would never think to equate a human being with his or her diagnosis – even if I get “jumpy” at first, I am still open to knowing that person AS A WHOLE. We are all many things, and greater than the sum of our parts.

    I think part of feeling jumpy is also knowing about myself that while I can now set boundaries, they’re not all that sturdy, and I know I have a tendency to take other people’s moods and states of mind into myself and not be able to differentiate — there’s actually a diagnosis for that – a former boyfriend said I exhibited symptoms of “borderline personality disorder,” but the hell with that, I don’t want to paste another label on myself.

    So, this is a very long way of attempting to explain what’s going on inside me when I get “jumpy” and by the way, I suffer (likely to a much lesser degree than you) from people acting weird around me when I “out” myself as having ADD – and when people laugh when I say something serious that to them sounds “weird” and they say stuff like, “Oh, you’re such a nut.” Or, “I lose my keys all the time, I probably have ADD, ha ha ha.”

    In a roundabout way, this all goes back to what I said about not trying to read people’s minds – you couldn’t know that a large part of why a “mental illness” diagnosis makes me nervous is because of all the trauma in my life.

    And while I 100 percent agree that a person’s actions speak louder than words (it’s not enough to say “I love you”), when we say “no one” likes or loves us, we are probably very much mistaken.

    My boyfriend tells me every day at least once a day that he loves me – and truthfully, I don’t believe him, even after 4 years of this – and at the same time, I am pretty sure that’s because of how I feel about myself.

    He’s 17 years younger and we’re often mistaken for mother and son by well-meaning people – ugh. That makes me feel weird. I am also about 40 pounds overweight, so I cannot imagine why he’s physically attracted to me.

    Also, my ADD makes me forgetful (he’s constantly having to repeat reminders about appointments or his schedule), spacey, always late, messing up on paying bills, and am easily frustrated – which translates into swearing and saying “Fine!” when I don’t get immediate cooperation. And I am a horrible housekeeper (who resents being expected to be a good housekeeper simply because I am female).

    So, how could he possibly love someone like that — right? He recently agreed to go to couples counseling with me, but I decided to get some therapy on my own first, because like I wrote in my previous comment, if I cannot love myself, I doubt I will every truly believe anyone loves me (except my dog, who I know is madly in love with me.)

    Sorry this is so incredibly long, but I had a lot to say — and that’s what these blogs are supposed to be about, yes? Exploring together, hopefully being supportive of each other, being honest, offering different ways of looking at things — and more. Thanks for giving me a place to share thoughts and feelings I normally keep mostly to myself. — Brenda

  16. I wish I could write better what others have already written here, and, even more so, write something that would make things better. It is strange- I have been thinking very similar thoughts these last few days. You are by no means alone in feeling this frustrated. Even doctors themselves have a bad habit of making assumptions and holding prejudices against people with MI Dx- perhaps they are the worst about it, having seen one too many cases go wrong, been trained to view psyc patients differently, I don’t know.

    What I can say is this: Your sharing your story matters. It matters to me, and to everyone who has been treated like sh*t because of their own illness(es).

    It occurred to me last night that most prejudices and bigotry are taught to us at a young age- and as such, are almost nearly impossible to change. If I could say one thing that frustrates me the most about our education system today, it would be a lack of emphasis on avoiding stereotyping and ridiculing those with MI Dx. The reason I am not racist, homophobic, etc. is because of how I was raised. Not just how I was brought up as a child, but who and what I was exposed to while in school. By the time I hit first grade I had a friend with two moms, friends of mixed heritage, and this was quite normal. I was taught what Passover was in grade school and, just to show the difference in generations, was the one to educate my parents on what Judaism was. I grew up around such diversity that discrimination was disgusting to me.

    And yet, when I knew I was sick, I didn’t want to see a psychiatrist. I thought it was stupid and I was just overreacting and my parents were overreacting. I was lucky- and I mean LUCKY- to have both parents that were well aware of mental health issues, AND to have hit upon a wonderful doctor on the first try. It took me years to see how many people held prejudices against people with mental illnesses, and eventually my mom’s advice to never tell anyone about my medical conditions was quite obviously (and sadly) some of the best advice I ever received when it came to avoiding stigmas.

    I wish someone had told me that being depressed was just as “ok” as being black, gay, straight, Asian, quiet, loud, diabetic, Jewish, Muslim… Unfortunately stereotypes take a much longer time to change than any law known to have been fought for in this country. Racism still exists, though it is highly frowned upon and illegal in the workplace. We haven’t even gotten laws into place yet to provide equal rights to people of the LGBTQ community- it is a relatively small number of people who are not bigoted in this respect, and there are still many that openly make cruel, hateful statements on the subject.

    It will take generations of parents helping there children to understand what mental health is, why it is important, and why it is just as disgusting to hate someone with a mental illness as it is to hate someone for having diabetes. Once you understand a bit about mental illnesses- that they are, in fact, both common and do not mean laziness/stupidity/ignorance/fill in the blank…- it seems more than absurd to treat people who suffer from them as different.

    BUT- and this is an important “but”- it has happened before, and there is a good chance it will happen again. By “it” I am referring to a widespread change in society’s attitude towards any given form of discrimination. Yes, it takes time, too much time, but it does happen. If, for example, you were to tell my grandparents, or even my parents, when they were in high school that there future grandchild/child would be in a relationship with someone who is not white, they would never believe you. And yet, here I am. Both parents and grandparents approving of him. So it does happen. People are just a little too slow with these things.
    ❤ Feel better- if not for yourself, do so to spite those who have tried so very hard to push you down.
    Much love and many hugs,
    Amy
    (And all apologies for grammatical mistakes- I know you are quite the writer and will pick up on all of them ;-D )

  17. Eek, sorry, more typos. I took a sleeping pill because I have so much work to do tomorrow to get ready for my son and his family moving here, and I was too nervous about everything to sleep. But the pill has not made me sleepy, just goofy. My apologies.

    I really like you Pam, do you know that? You have a warmth, and a caring core, a great depth of honesty that is beautiful and refreshing.

  18. Oh no, I just went back and reread my comment, and it’s full of typos. So sorry, I was writing in my emotional part of my brain, not in the editing part. Also I put that the message that made me go off FB for over a year was posted Christmas Eve of 2012. Obviously that’s wrong, it was 2011.

    Brenda, I wanted to tell you that I appreciate the things you wrote, too, particularly the part about our need to be kind and loving to ourselves. So true. It’s also very true, what you said about hospitals being an unnatural setting, and that we cannot read minds, and there may be times when we are mistaken in thinking that certain people do not really like or love us. I do believe that is also true. However, that jumpy feeling you so honestly said you feel when you discover that someone has an MI Dx,,,, thank you for being so honest, and yes, that is an all-too-typical response, and it is THAT RESPONSE, that involuntary attitude of the general public toward people with certain mental illness diagnosis, that jumpy reaction is very easy to discern. And it may be involuntary and unintentional and even understandable, thanks in large part to how the media portrays people with serious MI labels, BUT.IT.HURTS, when YOU are the one being looked at and talked to like you are a freak, the boogie man, a strange and unpredictable creature from another dimension.

    I am lucky to finally have my “certifiable” husband, whom I did not meet and marry until we were both in our 50s, and our sweet fur-baby Cattle Dog, who doesn’t know a thing about Mental Illnesses and couldn’t care less, so long as we feed and water and walk her and give her lots of back rubs. I worry about you, Pam, feeling so alone. Loneliness is a soul killer. I know, for I have spent the vast majority of my life feelings just as alone as you describe in this post, yes, even when I was married. In my experience, there is nothing more lonely than being married to someone who talks down to you and treats you like the worst of the personnel in the psych hospitals treated you. I don’t know why a man who looks down on the mentally ill would even want to marry me in the first place, when I had not ever hidden that part of my history from a potential husband. I can only surmiss, based on how I was treated, that a man like that is looking for a woman he can control and verbally and even sometimes physically abuse, cheat on her and do whatever the heck he wants when he wants, and feel all justified about it and superior to her because, after all, his wife is “crazy.” I would rather live all alone under a bridge and eat out of garbage cans, to ever be in a marriage like that again!

  19. Dear Pam,
    I liked this post, although I hate that you are in such pain, I like the honesty, I applaud the bravery, very very much. And oh yes I do understand, I relate with all my being, to virtually every word you wrote in this post, and in these your comments, too. Both comments.

    As I’ve told you, I am writing a memoir about my similar history. I’ve changed the working title on my book a few times: From Here To Insanity, Healing From Broken, Growing Up Crazy, and some others. The working title I have now is my favorite. I’m now calling my book GOING CRAZY, a memoir of horror, hope, and healing.

    The pain, the loneliness, the “shame” and isolation of having a been labeled Mentally Ill…. the label is a curse that hurts as much, if not more, than the disorder itself.

    Here are the words I have on the cover of my memoir-in-progress, words that echo this post to the marrow of my bones. I have this on the front cover:
    Mental illness seems to run in my family. (So does Protestantism and the tendency to vote Republican.) What causes mental illness: nature, nurture, or a combination of things? After a series of traumatic events, I had a “breakdown” at age 14 and was put in an insane asylum for 2 years. For the past 4 decades I have tried to forget my allegedly schizophrenic episode. But when I learned—in the midst of a family crises—that my first great-grandchild was on the way, I embarked on a Madness Marathon in search of answers.

    And this is on my back cover:
    Was I Cured of Schizophrenia? Do I Have “Complex” Post-Traumatic Stress Disorder?

    MY MIND WAS BROKEN—DOES THE “LABEL” MATTER?

    The extreme childhood trauma that caused my mind to shatter was painful. Being diagnosed with schizophrenia at age fourteen and placed in a state insane asylum for almost two years was even more painful.

    But my most damaging experience by far has been the shame and isolation I’ve lived with for over forty years, caused by the demoralizing stigma of having been labeled “mentally ill.”

    For most of my life I’ve tried to hide my history. Now I’m telling my story to help transform the hurtful prejudice borne of ignorance, into the healing mindset of understanding and compassion. Having recently become a great-grandmother, I feel compelled to write my memoir as a legacy of truth and enlightenment for my adult children and grandchildren, who have suffered so unfairly as a result of my emotional wounds. I am also sharing my story for anyone with a background similar to mine, to let you know you’re not alone.
    ………………………..
    I’m sending you love and hugs and compassion in my heart and mind right now. I hear you. Loud and clear. I have stopped communicating with a sister who refused to honor my request to please stop passing messages on the me from our mother, particularly the “tell Lynda I love her” messages. NO, my mother does not love me. Her actions have proven it over and over and over again. I told my youngest sister: “I’m not asking you to agree with me or believe me, I’m not asking you to take sides. We can agree to disagree about whether or not our mother loves me, that’s OK with me. All I ask is that you please stop telling me that she does.” My sister said nothing, no response of any kind to my request. Then a few weeks later she posted right on my Facebook wall, on Christmas Eve of 2012: “Merry Christmas Big Sis, and Mom says to tell you how much she loves you.” I deleted that message off my wall, and my sister then deleted her account… so I deleted my account, for over a year, only coming back to FB a couple of months ago to keep up with my grandchildren.

    I think we know when we are not loved, when we are not wanted, considered an embarrassment and a burden. I have grown nieces who do not know me, but they would post rude things on Facebook about me because I was locked up in an institution and diagnosed with schizophrenia 46 years ago. I was released from that place 44 years ago. I have had numerous doctors and therapists over the years tell me that I was misdiagnosed, I had PTSD or something else. But in my family of origin’s eyes, all but a couple of my relatives still treat me like the embarrassing crazy lady…. it HURTS. Yes it does. It EFFING HURTS. Worse than the pain and horror of “going crazy” in the first place. You SEE it in their eyes, you HEAR it in their words, their tone of voice, you DISCERN it in their body language, that “jumpiness” that 99% of the people get when you tell them, or they otherwise find out, about your MI Dx. It’s like a mask comes down over their face…. and you feel that ARCTIC CHILL, the deep-freeze of being frozen out.

    Also, Pam, in a marriage the loneliness and the judgments, the raised eyebrows, the rolled eyes, the heavy sighs, the thoughtless comments, such as my now EX husband made to the intake nurse at Johns Hopkins University Hospital Psychiatric unit, where I had gone voluntarily hoping for HELP with my then-intractable depression. In describing the harrowing traffic in the streets of Baltimore as he had driven me to the hospital that day, my now EX quipped: “The traffic was so bad, I thought *I* was going to go crazy, HAHAHA.”

    NOW I am lucky, NOW I am married to a man with severe chronic PTSD from Vietnam combat, a man who has spent time as a patient on a psych ward, so he UNDERSTANDS and does not hold himself above me or apart from me.

    I’ve said it before, I’ll say it again and again and again until I die: The CURE for all types of mental illness labels must begin with CARE: Compassion, Acceptance, Respect, and Encouragement. Everything that is the opposite of the shunning, the subtle cold shoulder, the jumpiness that we can SEE and FEEL and HEAR because, yes, dammit, we may have a screw loose here or there, but we are not stupid, deaf, or blind.

  20. Dear Brenda,

    Forgive me if that comment reply was snarky…please forgive me. I wasnt thinking very clearly or kindly apparently. My humblest apologies if i hurt your feelings. I really didnt intend to. I realize now that it sounded like i was speaking to you specificslly when i meant a more general comment. Anyhow, i am sorry. Truly.

    Pam

    Pamela Spiro Wagner: Artist, poet, author of Divided Minds: Twin Sisters and their Journey through Schizophrenia (St Martins Press, 2005) and We Mad Climb Shaky Ladders (CavanKerry Press, 2009). Available for readings, speaking on mental health issues, and sales/donations of her art. Please contact for details by email or skype phone: 860-263-0280 Check out http://pamelaspirowagner.com for links to Wagner’s art and poetry. Her art site for now is https://pamwagg.see.me

  21. Hi brenda,

    ” I still get a bit jumpy around someone if they tell me they have some MI Dx. I should know better…,”

    I need to ask you about that statement. Do you get jumpy if the MI Dx is depression? I doubt it, most people understand depression…we have all been depressed in some fashion for a day or two in our lives. Few people find depression a terrifying MI in the sense you speak of. What about OCD …would you fear someone if they told you they were obsessive compulsive? Maybe, but perhaps you might only be curious as to what their rituals were, since nobody that i know of has ever been injured by a person suffering with OCD. I dont know that most people find OCD scary anyhow. Hmmm, bipolar can be scary…would the dx of bipolar mcause you to get jumpy? Possibly. I mean, if depression is ho hum, maybe mania is frighteningly incomprehendible… But i dunno again. After all, all you need to do is imagine taking an upper and feeling too high, and you can imagine manic feelings…

    No, i think what most people really fear — and forgive me if i am reading minds. tell me if i am wrong, that is why i am asking… Is schizophrenia plain and simple, and all the other MI dxs are just so much nonsense in terms of equal opportunity fears. People are afraid of “schizophrenics” which is a word i never ever use…because no one is a schizophrenIC…they simply carry the label of a dx called schizophrenia, properly or not who is to say? But it generates fear and Otherness in people who lose all sense that there is a real person there and dont ever bother to find out who that person is…always always always there is a real HB under that dx and on top of it and besides it and inbetween it too. The HB is much more important than the diagnosis and th e diagnosis might not even be noticeable if you didnt know it..

    Sorry, but i just had to point this out.

    I Agree with the rest of your comment, though i dunno that people dont lie all the time when they say they love you…i think love is an act, a behavior. Certainly acts speak louder than words, and telling me you love me but not behaving tht way is not very convincing to me!

    Pamela Spiro Wagner: Artist, poet, author of Divided Minds: Twin Sisters and their Journey through Schizophrenia (St Martins Press, 2005) and We Mad Climb Shaky Ladders (CavanKerry Press, 2009). Available for readings, speaking on mental health issues, and sales/donations of her art. Please contact for details by email or skype phone: 860-263-0280 Check out http://pamelaspirowagner.com for links to Wagner’s art and poetry. Her art site for now is https://pamwagg.see.me

  22. Hi Pam, no need to apologize about venting… we all need to do that from time to time when we are overwhelmed. I would like to share my point of view, though, on one part of what you wrote:
    “But it doesn’t even matter to them whether I love or like them, my like and love are meaningless to them, worse they are burdensome to them.”
    I have learned – at least intellectually – that it’s dangerous to try to read other people’s minds or emotions. The only way to truly know is to ask them, and even then, they may struggle to express themselves accurately. I’ve found that most of the time, if I try to read someone else’s mind or feelings, I am usually wrong — and this has a lot to do with my own rickety self-esteem.
    Like you, I also struggle to actually FEEL that people who say they love me in fact do love me. I also have come to realize how much I’ve hurt people when I’ve questioned them or just shrugged it off when they say they love me or otherwise try to express it. Usually it takes putting myself in their place — how would I feel if I told someone I loved her and cared about her and she said, “Yeah, OK.” (which is what I do… cringe.)
    So, it comes back to that age old and probably overused bit of advice — which nevertheless end up being true — that if we are to feel loved by others, we have to feel loved by ourselves… and I am continually working on this. At the very least, I try to treat myself the way I would treat any of my friends — or even most strangers, for that matter — with compassion and acceptance and a desire to be supportive.
    Dealing with hospital people, on the other hand, of course is going to be different — hospitals are such an unnatural setting. One on one with a naturopathic doctor, is quite different. Also, there is lots of fear surrounding anything deemed “mental illness” — partly because we all fear what we don’t understand, and partly because people are afraid they might someday “go crazy.” I have a kind of “mental illness” – which is ADD, and possibly suffer from Post Traumatic Stress — and I still get a bit jumpy around someone if they tell me they have some MI Dx. I should know better, but I am a product of my culture, as well.
    So, Pam, I hope this inner storm settles for you soon. You are a gifted and kind and beautiful woman. And I am one of those people who care about you – Brenda

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