And now for something really different. Cartoons that tell you about my life these days.
Hope you can make out the text okay…It is a little difficult,. granted. But I tried to photograph the pages clearly as possible.
Gargantua is the name of a book, and a character in the book. In it someone says, Appetite comes with eating. It helps me to think about that when I find i cannot find a way to put food enough in my mouth to keep going…I need to eat on schedule if only to keep my strength up.
Meanwhile I am not in a good state at all. Bill wanted to talk about an email I sent him saying as much as the above, but I am much too shaky to be able to deal with it. I just cannot use him to talk TO alone…I have friends with whom we have shared equally all along, and so I do not feel a burden now when I am in trouble. But Bill has ceased talking about himself a long while ago, and I am to blame for letting him withdraw. I felt slighted but felt that perhaps he was reserved and saved his intimate moments for his girlfriend…But no more. I cannot be using HIM as a pair of ears and feel that he shares nothing back. THen I feel guilty and a selfish user! That isn’t fair to me let alone to him…It won’t happen. It won’t be. Not any longer. Hear that, Bill? YOU are an important part of our friendship, as a person,. and if you don’t want to be a person, I do not want a NON-person as a friend.
Enough. I feel like I am going to die. And now even the doc doesn’t want to suggest that I take even a sliver of Abilify now that I am off it…So I am really up a creek..Up a creek because I dunno how long I can tolerate this. I smell rot rising inside me, smell it for real., Like my body is rotting from within…Where is it coming from? I brush my teeth several times a day (unusual for me!) but still the rot smell persists!
I am not a praying person, but I know many of you are. I am in such deep shit. I will be going to art therapy today, perhaps that will bring some relief. in the meantime, if you feel prayer can help, pray for me…?
Thank you , all of you, for hanging in with me. I am NOT a quitter, I am not a quitter!
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.
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.
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!
My longtime dear friend, Joe Cornelio, died at the end of April, after living with, and I mean, living with, ALS (Lou Gehrig’s disease) for five years. Although he spent the last four of those years in a chronic care hospital on a ventilator and virtually helpless, he never once gave up on life or stopped loving it. He was a miracle of a man and even at the end I believe he would have continued to fight to live, even if all he could do was move one eyeball to say yes or no. It is entirely possible that he would have wanted to live even without that ability, but we will never know.
It is difficult for me to write about the day he died, or about how it came to pass that he was removed from his ventilator, but if you will bear with me, it may do some good (for me at any rate) to put the pieces together and get it onto paper.
I believe that Joe was misdiagnosed for many many years with schizophrenia, when in fact he had had Asperger’s from childhood. Now, that’s a long story in itself and though I could make a case for it, I cannot prove it. But I am not the only one who knew him well to notice that he never once exhibited signs of psychosis or even real delusions or true paranoia. Furthermore, from what I gather, the only reason the diagnosis came about or “took” was because he was put on Trilafon by a well-known psychiatric incompetent who was later “defrocked” and when Joe looked the drug up in the PDR and read what it was used for, he concluded that that meant he must have schizophrenia. From then on, so his story was, he told subsequent doctors this diagnosis, and apparently they simply took it on faith. In fact, for all the years thereafter until his terminal illness of ALS, the one doctor he saw not only never questioned this, but also never even reconsidered his absurd concomitant Dx as bipolar, even though Joe clearly had one of the most placid temperament possible and certainly wasn’t the slightest bit moody. No one so far as I know ever even considered that there might be something else going on. Even when I once went with him to see his non-medical therapist, did she really seem even to want to think about the possibility, as if it might be too much trouble…Perhaps, though I cannot recall, it was too late, if in fact this was after Joe’s ALS diagnosis.
But as I said, that is a long story, and not being a doctor, I suppose I can’t make the diagnosis, except that as his closest friend, I do and I feel that a great injustice was done. Not only was he saddled with a serious psychiatric diagnosis, and a stigmatizing one at that, but that particular neuroleptic medication rendered him much too tired to work as an engineer. All his adult life that was what he really wanted to do. Work. But the drug sapped his stamina…Worst of all, although eventually on Zyprexa which helped what might have been poor social skills due to Asperger’s, after he had been on it for years it caused the diabetes that ultimately cost him his life.
Speaking of engineering, all the years I knew him, Joe thought, breathed and ate engineering in one fashion or another. It is not that he was an automaton or a bore so much as that he applied engineering thinking to every problem that came up in life, even to our quarrels. Or better to put it, to my various emotional upsets. Whenever I got in some sort of “state” his approach was always to remain calm and to break things down into little pieces and to try figure out, or to help me figure out what was wrong and (just like a man) how to fix things. The beauty of this approach was that it so often worked! He never fed the fires, and he never took things personally, which was pure magic. Sure, he could be irritating for the same reasons, since when he was the source of my irritation, he rarely responded and he never listened to anything I had to say, unless someone in authority said the same thing, and then they got the credit. This hurt my feeligns time and time again, for I felt that he never took me seriously, and discounted everything I said as being worthless for my lack of degreed expertise. However, I came to accept that and by the end it was just a joke between us. I would find him a real expert to tell him what I already knew, just so he would believe it.
Anyhow, for all his faults, and even the dead are not blameless, he managed his last illness with amazing gracefulness and not a word of complaint. The day before he was hospitalized with the pneumonia that put him permanently on a ventilator, he saw a new doctor, who actually gave him a clean bill of health, so to speak, and said his lungs were clear! Joe came away from that hour and a half appointment not saying a word, even though he could not breathe well, and had been to see him because of it. The doctor must be right, no? After all, he was a doctor. (So much for medical degrees and expertise…) It was only later that evening when he went into a breathing crisis that Karen drove him to the ER where they found him suffering from aspiration pnsumonia, a common result of ALS when the throat muscles are too weak to prevent saliva and food and liquid from entering the lungs. He was immediately taken to the ICU and spent 3 months there, first with the aspiration pneumonia that almost killed him, and then, just as he was being weaned off the ventilator, with 2 more cases of hospital acquired bacterial pneumonia, which made it impossible.
After that, it was four years in the Hospital for Special Care in New Britain, where the care was indeed special. They were wonderful to him there, and I believe he would never have survived as long as he did without them. But in the end, Zyprexa had caused diabetes, which he did not even know he had until the ICU tested his blood sugar, and it was uncontrollable even during the years at the HFSC. During the final year the tissue around his tracheostomy started breaking down and would not heal, which is not unusual in diabetic skin wounds. Eventually the hole that held the tube grew so large that the air began leaking so much that he was not getting enough oxygen without the pressure beign increased dangerously, and during his last week, his lungs began to bleed, probably as a result. He went in and out of consciousness, according to whether or not he had had a transfusion.
Amazingly enough, though, one of the last times I saw him completely alert, conscious and able to communicate, he told me by moving his eyes and indicating letters on a letter board ( he had lost the ability to control his computer, which for years had spoken what he spelled with the gaze of his eyes) that he was “still chugging along.” When I asked him if his life was still worth it, and if he was still happy with it, he answered without hesitating, YES.
He knew he was dying, but he begged me to make sure no one killed him, that no one just pulled the plug on him or let him die through neglect. I promised him that, and asked his cousin, who was in charge of funds to hire an aide, just for someone to sit with him during hours when the hospital might be short staffed. This man, Ben, turned out to be an angel in disguise, apparently, though I met him only on the final day.
Why the final day even came as it did I will never know, I suppose. I still do not understand the rush, when the very day before from all reports Joe had been quite conscious alert and seemingly content. All I know is that I got a call the next morning that he was going to be taken off the ventilator that afternoon. I asked first if he was unconscious, and was told, um, yes…but it didn’t sound convincing. Then I asked if this was his wish. The response was that it had been pre-arranged back when he had first become ill.
I wanted to say more, but I was up against two strong men, his cousin and the doctor. And under the pressure of the moment, I forgot that I had any rights in the matter, if I did still. I forgot that at least in Joe’s living will I had been designated at one of the medical representatives, and that the cousin was supposed to consult with me before making any end of life decisions for Joe, and then only if Joe were in a persistent vegetative state or completely and permanently unable to communicate. But so far as I could tell, neither of those conditions were true, had not been true up until now and could not be shown to be true within the space of one day. Yet the announcement was so sudden and so abrupt and definite, that I had no chance to say, Wait a minute, what is the rush?! I simply stammered that I would be there asap. I now wish to god I had stood up for Joe. I know he was conscious when I got there, I know that he could have communicated with me and probably have indicated whether or not he wanted this done. But I didn’t dare ask him, or even bring it up, lest they kill him anyway and my letting him know in advance only increase his terror…Would they have done it expressly against his will? I had no idea! I was terrified that indeed they would have. I didn’t know what to do… I had brought in music for Joe to listen to, because I thought that he was unconscious, but he didn’t seem so to me and though he couldn’t respond, he did seem to see me. And even his cousin talked to him with the same apparent understanding.
But it was all grotesque, because I knew what we all did, and were dancing around not saying, which was that Joe was going to die within the next ten minutes. NO one even said a word. (I admit that I did, privately, indicate to Joe when all were out of the room, that I would be there all of the afternoon, for as long as he needed me, but I didn’t tell him exactly why. Well yes, I did say that the plans he had agreed to at the start of his illness– I cannot recall what I in fact said, but I let him know as gently as I could what was going on. Was I cruel, unintentionally? Well, get this: The doctor who was going to pull the plug came in and in front of Joe, as if he could not hear him, told us all what was going to happen, how he would make Joe unconscious with morphine and then turn off the ventilator, and related each stage that Joe would go through as he died…He told us this blow by blow right in front of Joe, right as I am sitting there at Joe’s side. But when I asked him to speak directly to Joe, he said, “No, not in Joe’s frame of mind, that wouldn’t be helpful.”
HUH????? What was that supposed to mean?
I will probably be asking that for a long time. Why did he not act like the compassionate physician he was supposed to be? Where was any shred of compassion? For god’s sake, if he was “helping Joe not suffer” where the hell was his empathy for his mental suffering? Did he think that just killing him was not going to cause suffering? I mean, what the hell?
Well, I cannot go further with the details, except to say that I left after Joe was essentially no longer Joe, once he was in a coma. All through his illness, Joe had never seemed any different to me, had never looked or become anyone any different from my old friend. But at the moment I looked up from his hand as I stroked it, I realized that he was gone (though technically alive) and that Joe was not there. I bolted then and there, realizing that I wanted not to see anything more.
Joe is gone now, and I had a really hard time for several weeks. The funeral was held very quickly an hour away in his home town, so few of his friends who had stuck by him could go, if any. However, a few weeks later, we had a memorial service for him in the hospital, a service I personally found somewhat hurtful, but that is another long story. In any event, I wrote two poems for him, which I read for it. Only one can I print here, as I hope to publish the other before I put it in my third book.
for Joe Cornelio
When you die,
let there be lightness in your limbs, so they can rise
to lift you from your bed.
May there be clarity in your speech
so your tongue can once more speak the names
of those you love. Let those syllables wash
your tired face. Take up your hands, reach for mine.
You can wipe your eyes now.
Let your smile widen and shine as it can.
When the perigee moon rises above the water
let it pour gold through the trees,
let the fish leap in the blue ripples of evening
and the frogs that are left sleep in the cool mud.
Wherever you are, may you remember
both the friends who stayed and the friends
who scared, for all of us loved you,
blankets to your chin, and let that warm you.
And should the light fail at the end of the tunnel,
remember: only when it’s dark
can you see the stars.