Introduction 23andme is a personal genome mapping service. You send them your saliva sample and get a (partial) map of your SNP genotype. We have tried the service and the whole experience was very…
It’s difficult when you have a story to tell that has enlightened you, but it is so deeply personal that it is difficult to share. Ironically – those of us with mentally ill friends or family members need to share our stories and find support from each other. It is CRUCIAL, or we end up feeling alone and powerless. A very gray despair can take over. So please, if you are a parent, spouse or whatever of someone you suspect or know is mentally ill… reach out to me. Everyone should use a different name so they feel safe.
The stigma and shame of mental illness makes it so hard – we want to protect our loved ones from that stigma so we remain silent. But WE need support. If you know of good resources for caregivers of those struggling with mental illness, contact me. I would like to start an online support group for us. If there is enough interest I will eventually divide it into three groups – partners – parents of adults and parents of children. Or if one’s already exist – I will post links here.
People have NO idea how hard this is. Well meaning friends minimalize it in an effort to make you feel better “oh they have meds for that, she’ll be fine.” In the end, I have found, that the caregiver is the person who is judged, and the person who is ill ends up not receiving the help they need. It’s time we join together and help one another. Are you with me? – firstname.lastname@example.org
My own invisible illness currently has be down for the count – not sure when I will be writing again. But wanted to share this lovely post – please read!!
“Start where you are.
Use what you have.
Do what you can.”
Before I got knocked flat by the “yuppie flu” (now more respectfully, if still problematically, titled Systemic Exertional Intolerance Disorder) I was an ambitious person.
In high school I answered the call from a favorite AM Radio DJ to collect money for St. Jude’s Children’s Hospital. I organized other kids to collect donations door-to-door and street-by-street. We covered the whole town. At the end of the day, our kitchen table was covered with neatly stacked bills and columns of coins. As a reward, participants took a chartered bus to Cleveland to a live concert with the popular DJ.
While I was pregnant with my third child I organized other volunteers in Scioto county, Ohio’s largest county, to collect signatures for a state-wide ballot initiative. Collecting enough signatures for a bottle bill turned out to be relatively…
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It was the tail end of one of the most brutal winters New York had ever seen. Dirty drifts of snow that were once pristine, holding promises of sleigh rides and snowmen, now lingered stubbornly. It was not the best time to pick to move. It made leaving our family home all the harder, logistically and emotionally. The grayness and hopelessness hung in the air.
Leaving is hard. But for me, that house held so many bad memories, was such a burden financially, I had no other choice. Plus, the New York real estate market was plummeting; I wanted to walk away with something to show for the hell that had gone on in the past ten years. For my son, however, it was the end of his childhood; heaps of bikes laying in our driveway, sleep overs, block parties, happiness. I, his mother, was ending all that in one swipe of a pen.
Everything changed that day. I left the empty house one last time, on the way to the closing, dodging puddles and mounds of snow. I was late, of course. My son pulled up next to me in his truck. I examined his face. My boy was becoming a man, a new driver. Somehow though, he looked oddly misplaced behind the wheel, as if he should be racing his BMX up the hill that was once our driveway. I looked deeper into his eyes. They were ice cold. “This is a hard day for him,” I thought.
I didn’t know it at the time, but that was the day my son became lost to me. Words, gestures, love, nothing would fill the chasm that had somehow grown between us.It was if those big dirty mounds of snow were glaciers that left broken earth in their path, separarting us forever. I tore him from his childhood, unhappy as it was, into uncertainty. He would never trust me again.
There are certain things that we, as parents, steadfastly believe. One is that our children will always love us, that no matter what, we will always find our way back “home” to each other. I believed this with all my soul. Sadly, it’s not a given. Of all the truths I have had to face in my life, this has been the hardest.I feel like those big ugly piles of snow; no more sleigh rides or snow men, just waiting pitilessly to melt.
PHOTO CREDIT – She Knows
This is beautiful and haunting and exactly how I feel –
I chase the things,
I cannot have,
I want the things,
Out of my grasp….
For all my life, i’ve been this way.
I hide my truth,
Behind a smile,
I write to live,
For all my life, i’ve been this way.
I love- beyond,
Limits and bounds,
I give my all,
For all my life, i’ve been this way.
For all my life,
I’ve lived not thrived,
Watered my loves,
And wilted out,
I was this way, for all my life
It’s time to change, for the life I can have…
The above image is courtesy of Abbide.com
Your life seems to have been sucked into the path of a tornado. You try to grabs at bits and pieces of your belongings as they fly through the air, all the while thinking, “I’m going to die.” Your mind races to put things in order. “What did they say on the news? Get in the tub!” You watch momentos crash and memories crumble. You know nothing will be the same again. Will you even get out alive?
Life feels like that sometimes. Hopeless and chaotic. But often, things need to be broken down to be built up again. I always think of the line in a Steely Dan song “any minor world that breaks apart falls together again. When the demon is at your door, in the morning it won’t be there no more.” Try telling that to yourself in the milddle of a tornado!
Change is painful. They say that people who are able to embrace and enjoy change are the happiest, which makes sense since life is continually changing. This is where I am in my life. I try to look at it like a clean slate to paint a whole new future. But I am just too tired and the tornado is sucking me in.
PHOTO CREDIT: Spiritual Self Transformation Blog – Please visit them!!
I have been using writing as an outlet since I was seven years old. I got my first poem about spring published in our school writer’s booklet. I felt so proud to see my words written under the title and best of all, my name. I felt proud! And it was OK.
As I got older and closer to puberty, I started writing for comfort; things that only I would see. I felt like I had been dropped off by aliens to a house that I did not fit into. Writing was my ally and comfort for many years, until I allowed someone to take it away from me about thirty years ago. They violated my privacy and in an effort to regain control, I tore up all my old diaries, ones with some precious memories of time spent in Brazil, that I wish I had today.
After that I started writing again when my son was born. But I was guarded. I wrote all about him and the delights of what he would accomplish or learn every day. I wrote because I wanted to sear this happy time with him into my brain, and also edit out the ugly sick parts that involved his father. So it was a tool for me in a different way.
Once the internet emerged, a new outlet for me, I started writing again, for newsletters and such, but nothing real. I never felt safe again until after my ex-husband was dead. Once he was, I started a blog, but still being a bit paranoid, it was hidden with all sorts of passwords. I wanted it to be read, but not by people I knew. I wanted to be connected with kindred spirits. And again, I was violated. The details are irrelevant, but a quote I found said it all. “A jealous woman does better research than the FBI.”
So basically, I allowed others to take away my greatest joy and purpose. Over the years I have become a very good researcher and really enjoy writing about self help topics and natural health, which are safe in my mind and won’t elicit a lot of judgement. I HATE being judged. When I got diagnosed with adult ADHD, and saw how many people struggle with this stigmatizing diagnosis, I created this blog and started writing again in earnest. I somehow found the nerve to go public. For a new blog it did very well, but then I became ill and could barely move let alone think or write. So sadly, the blog went to the waysides.
Trying to find help for my illnesses that were growing exponentially, I flew to Chicago to see a functional medicine doctor who had put her own Hashimoto’s disease into remission. I had three visits with her. I did not talk extensively about my life, yet on the third visit she told me, “you do not have ADHD, you have complex -PTSD, and sometimes there is an overlap of symptoms. The ADHD meds are burning out your adrenal glands and that is why you are getting worse.” Well wasn’t that a kick in the head. Not only did I painfully “come out” about this affliction – turns out I didn’t even have it! Symptoms of it that needed to be managed, but that was not my root issue. SO embarrassing, I couldn’t even talk about it for a while.
So NOW I had the shame of having to recant all that. What a hypocrite! I had been trying to transition this blog into something else, when suddenly, my life totally fell apart and I realized I needed to write; that the greatest writings of my life all came out of suffering. These are very sad days for me – but I come to the keyboard every day with ideas bursting forth quicker than I can type them. Suffering is something I never wanted to share, but I don’t care anymore. If my suffering can help YOU, then so be it. Let the judging and shaming begin!! But honestly, it doesn’t matter, cause the judgers and the shame find me in the end anyway so I might as well write.
The Myth of the Tortured Artist – and Why It’s Not a Myth Huffington Post Article
When I was three years old, the day after the last happy Christmas I ever remember, the world went black. It was bright and brisk and my father stood in his gray tweed winter coat, off to get groceries. I was the outcasted baby. “Daddy, they won’t let me play with the track set!!” His eyes twinkled. “Aw come on guys, let the little one play!” He gave me a snuggle and off he went to do my mother’s bidding. That was the last time I would ever see my father upright.
My older brother and sister continued playing with an incredibly cool racing car set; cutting edge for 1964. Why were there only 2 cars??? I went up to my parents room. My mother was not such an ally. Concentrating on her paperwork as I lamented the injustices that an almost four year old, youngest child must face, she basically ignored me. Suddenly, my brother, ashen faced, came running up the stairs and my mother was down the steps in a sprint. If words were exchanged, they eluded me, but even a three year old can understand urgency.
Downstairs, in our foyer, on a mustard plaid tufted couch, that I would kill to find on craigslist today, lay my sweet, crumpled father. I stood in the doorway with my sister as we watched my mother kneeling beside him, not quite sure what she was doing. I could hear my terrified 12 year old brother as he fumbled with a rotary phone, desperately trying to reach the operator to get an ambulance. I felt bad for my car hogging brother. “Is he going to die?” I whispered to my sister. The words left my lips, even though I had no idea what they meant.
My father’s relatives came; stoic stern figures, nothing like my always jolly, playful, daddy. My mother was whisked away in a white ambulance. Dusk had turned to night. It was as if my father took the glow of day with him, forever, and I was left with these odd, cold, people who had apparently hosted us 24 hours previously. Us three kids were in our rooms, sent to bed. In my crib, I heard hushed tones in the hall outside my room. It was dark, it was bad. I fell into a fitful sleep and never slept a dreamless peaceful night again.
Five months later, it was spring. I heard the mail slot clink and ran to pick up a pile of letters.. I brought them excitedly to my mother. I am not sure what was in that pile, perhaps a hospital bill, or a Social Security check, maybe nothing, but something made me ask “when is Daddy coming home?” My mother was shocked. I supposed she had told me already, that he died that night, the day after the best Christmas ever. If she did, I didn’t remember. Somehow, in some sort of brain glitch, for many years my mind believed that in that pile of papers lay the horrible truth that my father was gone forever.
It’s funny what kids think when they don’t know the truth about anything; trying to piece the world together from snippets of random information. Years later I found out we weren’t told till after the funeral that my father had had a stroke; not particularly fair for my 12 year old brother, and not particularly enlightened for my Dr. Spock reading mother.The word “closure” was not not in use yet, but I am reasonably certain that we didn’t get any. And so, that is basically how my life began.
Twenty years of therapy unearthed the notion that maybe, just maybe, this is when my horrific sleeping problems started. I can pretty safely say that in the middle of the 1960’s when I lost my dear sweet father so suddenly, who I would never truly know, my complex – ptsd began. But no such thing existed back then. If a mental “wound” develops before we know what it is – is it sort of like when a tree falls in the woods?
Hello C-ptsd – I wish I never met you.
PHOTO CREDIT: The Atlantic Post Traumatic Stress Disorder Counseling
My last post was really intense for me – I hadn’t written in so long. It was personal, and to be honest, I expected some sort of astounding response; like all the people suffering from c-ptsd and other assorted types of horrendous trauma would say “hey – I get that!!” But alas, each day I check, and there is no loud validation or camaraderie. I have neglected the blog too long, I lost my network.I was busy losing my mind.
And then today I saw that “fighting like hell” liked my post. So as I usually do, I sauntered over to take a look at her blog. I will tell you that I generally read the latest post or two of another writer and then I move on. Today, this was not the case. I was grabbed by the heart, almost a little violently, and emotions started flailing around inside. I felt a little panicky; I had to tell myself “it’s not you!” Totally full of compassion yet powerless, her words penetrated my soul and I also felt ashamed.
Oh the rare occasion I confess to being diagnosed with PTSD it’s not unusual for me to feel ashamed. I think of the Vietnam Veterans of my youth, so tortured, tossed aside and misunderstood. THOSE men and women earned the right to say they had PTSD. All are soldiers who return from the Middle East – entitled. This writer, who I just stumbled upon, SHE has the right, good Lord does she have the right. But her words are stirring up my own demons and I keep thinking – I DON’T have the right!
So I keep reading her extremely talented and compelling memoir of sorts. The chick can write! She puts into words what I have never been able to express without sounding like a fool. She is my new idol. I want to hug her. I want to scream at the computer “YOU WERE SIX!! IT IS NOT YOUR FAULT!” (you really have to read her blog). My mind is unleashed now. “She needs a publisher,” I tell myself as I sit in the dark, in the middle of the night in silence except for the irritating ticking of a lone clock. There is no spot for comments on her blog. I am frustrated. “They shouldn’t make you relive it! NO NO NO!” “It’s nice that your husband was trying to protect you, but why did he have to be such a controlling asshole about it?” I secretly wished that he hugged you and promised you it would all be okay. Lunch and a manicure would have been nice! But somehow, people don’t know how to comfort us, without judgement or shame. It makes it worse.
I have very recently started going public with “our” Complex PTSD. It doesn’t matter. No one understands it anyway. The one who was the littlest at the time, I don’t know if I can save him. I don’t know if he will just live his life in this quiet torture.That is the worst of it for me. Almost unbearable. And it becomes a circle and we are triggers and trauma reminders for each other…while the rest of the family just says – “it’s over, I don’t want to hear about it anymore.” OK – and we just get worse. And we two who were victimized drift farther apart – and it’s so heartbreaking.
I try to tell my siblings – I think that if someone understood, it would be easier. “People go through so much worse things, ya know!” Fuck off, I want to say, but then I read this blog and yes, it was SO much worse. and I am so so very sorry. I don’t know you, but I love you. I love you because you are a human who has been cut off, adrift at sea due to other people’s actions, and then reactions, and ignorance. I am so sorry. It wasn’t your fault – none of it. Your last conversation- don’t think of that – you were warriors together – you had love in your heart for each other – he knew that.
I know you – I feel you – I will pray that you can find a life that gives you some kind of joy. You deserve it. Keep writing – you are incredible. You are worthy of all good things – And maybe all of us with this awful emotional WOUND can comfort each other and maybe feel a little less alone. Maybe the world can show some sort of compassion again – maybe the gray can go away. Just Breathe! You are wise.You are beautiful.
In July of 2007, my borderline personality ex took his own life. I was left to sort through the wreakage that he left behind. For a person that was neither highly educated nor intuitive, he carefully and methodically spent months brilliantly preparing his dramatic exit, so that the world would continue to see him as the victim and those he loathed as villains. What kind of distruction did he leave in his spiteful maniacal path? Only time would tell, and only those enlightened few will notice!
Hmmmm, how do you exact revenge from the grave on those you leave behind? Murder/suicide is often the headline grabbing choice, but maybe you would rather be more subtle. Maybe you don’t want your legacy to be that you were in fact a cowardly piece of excrement. So how can one obtain the greatest impact while preserving their “false self.”
Certainly you wouldn’t want to hurt your own children, but their mothers, ah ha! That’s who you need to punish and you hurt them the most via their own children. The fact that they are yours as well is incindental. Sorry, the kid’s are just a casualty in this war. So you will take their innocent souls, turn them against the people who might save them and infect them with our own insipid sick ramblings; twist them with your paranoid ideas.You have become very adept at this. You did it to their mothers. You do it to ANYONE who challenges you or gets in your way. You are good at it and YOU are a monster. It is second nature. So you proceed to make vegetable soup out of your childrens’ emotions; injecting them with your sick masogonistic, paranoid ideas. It doesn’t occur to you that you are the lowest piece of garbage on face of the earth. OR that hat they will struggle for years to feel good again or have healthy relationships. All that matters is that you will have the last laugh, and that you will come out smelling like a rose. Poor you, all the injustices you suffered, you could not bare it any longer.
So you leave this earth. You disinherit your kids, which isn’t even the worst of it. You turn everyone against them, leaving them with little to no support, except the mothers whom they’ve grown to hate (google Parental Alienation Syndrome). Some of these kids will thrive. Some will turn to drugs, or sex or crime, or gambling or become abusers themselves. Others will be perfect little soldiers; ideal citizens, until one day, a small thing, a semingly insignificant thing pushes them to the brink; and they crumble.
The people around them, who you brainwashed as well, will not connect the dots. They will not recognize your sick handywork after so many years. However, the mother’s will know, if they are smart and tried to learn about the devastating disorder that took over your personality and mind. They will know. But it won’t matter, because you have rendered them powerless. YOU have planted seeds of doubt and lies over the years.No one will take them seriously. THEY are hysterical, they are bitter, they are the reason you were forced to sink to such depths. (If you are reading this and a victim of abuse, please know that this is utter bullshit.)
So NOW the mess is left in the caregivers laps – (I speak as a mother because that is my perspective, but I am sure there are men who have endured the same hell.) We are left with angry, brainwashed, broken children. Grieving, confused, disenfranschised, they will not recieve the support they need because the dysfunctional families that spawned them will want to disavow any responsibility. No one will want to really look at how sick the individual was. Things like that don’t happen in a vacuum. Everyone in the family is infected in some way or another.The whole family needs help, but few get it. Everyone just wants this ugliness to be over. But it’s not.
For the people that truly love the children that are left behind, they won’t want to admit the extent of the damage. They will say well meaning things like “she will be fine!” “time heals all wounds” “it wasn’t that bad!” and the granddaddy of all ignorant insults “people go through much worse – they should be stronger.” There is nothing more frustrating than people who speak athoritatively about things they know nothing about. You will find this archaic narrow minded thinking most often, in my experience, in men over fifty. Do not turn to them – you will want to rip your own hair out and just feel more alone than you already do.
I don’t have answers – I have anger. But I will. There is no force greater than an angry mother lion. One thing that I HAVE learned through all this is that it is admittedly really hard for everyone involved to deal with mental illness, me included.You can’t help but second guess yourself. But when teens go on shooting rampages you will hear the echoing refrain “where were their mothers????? Someone MUST have known that something was wrong! ” We are an indignent jugdemental society, and until we educate ourselves and have some kind of compassion instead of judgement, we are all doomed. Do you know someone who is abusive to a child? Do we even know what abuse is anymore?
I was going to turn the focus of this blog towards autoimmune disease; the frustration and shame that is involved in it. Did you know that most autoimmune diseases start with trauma? I guess all people who let trauma effect them are weak. I am here to tell you – that’s utter nonsense AND you are not alone -The ignorant people who make you feel worse and try to blame it all on you can go fuck off….cause honestly – I have had it with this selfish, self involved society that doesn’t have a bit of compassion. My blessings to all of those who have suffered at the hands of a monster or who have had to watch silently while those they love suffer. I refuse to be powerless any longer. I wish everyone peace.
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