I will read you every word so you will know I’m smart like you are will you stay with us I won’t be loud I need you even though you have to go
I will read you every word so you will know I’m smart like you are will you stay with us I won’t be loud I need you even though you have to go
I don’t do this for myself. I do it for my children. For my daughter who will have her own children one day and may suffer as I did.
You never know what will happen when you reach out to someone. Not everyone is ready for a true friend. It’s taken me a long time to realize this. I still don’t understand it and take it personally more often than not.
I’m a transparent person. I have hurdles I have to overcome, battles I need to fight and I am an imperfect person something I don’t try to hide. I worry sometimes I come across as a toddler yelling “I make mistakes!” with a wide sunny grin as though it were a gift. Perhaps I do come across that way sometimes however I don’t think that’s something to apologize for. One thing about making mistakes is at least you know you’ve tried to DO something. You’ve tried to make a thing happen even if you bungled the entire operation from start to finish. Some mistakes are worse than others obviously. Still we learn from them, however hard the lesson.
My continual need to reach out to other people and share my story with them and hear theirs is just part of me, it’s who I am because of how my life has been. The joy I’ve experienced when I share what I’ve been through and someone else shares what they’ve been through with me and we each accept, forgive and love each other despite those scars is nameless. It literally cannot be touched. Because of this however, when I see an opportunity for that level of happiness and my attempts are met with a firmly closed door, or worse a mere dismissal as if my olive branch never existed I am so crushed, I feel so rejected that it’s hard to LET IT GO. I can’t MOVE ON. I want to know why I couldn’t reach them. Why they wouldn’t let me in.
The truth is, it isn’t about me. It isn’t about me at all. There are a million and one reasons why someone keeps the doors of their life closed and the shades of their heart drawn even against the brightest, most beautiful days. It’s their right to take solace behind a locked door. Just because I want them to feel the sun with me doesn’t mean they have to and it doesn’t mean that sunlight is any less beautiful. It’s just the way of things. It’s the way people are. For someone who is used to hiding, used to pretending to be “perfect” my openness and consequent awareness is off-putting. What? They say. How do you know me so well? Only because I am you I think. Only because I used to try to hide too.
This is how it is battling bipolar disorder. Battling anxiety, depression, self doubt. Battling any mental illness really. Once you accept that you need help and you ask for that help and you receive it, you want to share it with everyone else. And you become adept at spotting the same illnesses, the same broken pieces in others. You want to help them too. Even when they don’t want anything you have to give. Because part of the struggle is learning to break open that rusty lock and connect with others who feel the way you do.
I’m on a journey. I used to take a multitude of pills just to stay stable. Things are different now. It’s important to note I have been working with medical professionals and no one should ever EVER just stop taking their medication. I just happen to have a big mouth and a refusal to accept a regimen that isn’t working for me (restless legs, 50 lb weight gain, the inability to write, etc) So I used my big mouth and about a thousand phone calls and I now take one pill for my bipolar (lithium), one (will likely become two) pill for my raging ADHD (vyvanse), two for the anxiety brought on by OCD (gabapentin & klonopin) and one for sleep (lunesta). I actually tried ambien and had a psychotic reaction to it so if this has happened to you you’re not alone. I took the pill and 30 minutes later I told my husband- “The eye told me you have bodies buried in the yard.” Needless to say I never took it again.
Sleep is so elusive but my God it’s so vital especially when you’re battling mental illness. But who can sleep when there’s so much to do, so much to think about and everything whirls around in my head like a carnival ride you can’t get off of. It’s important to note that sleeping pills are EXTREMELY dangerous. The wrong one can change you into a psychotic mess. And if you’re extremely depressed, in large doses they will kill you.
I wrote in a past blog about how lucky I was and how much I loved my doctor. Well as usual nothing lasts. This is what we as people who suffer these illnesses go through. I put my entire trust in her and our last appointment she told me that although she was reducing her case load she would never drop me as a client. A week later I got a phone call from her office saying she would no longer be seeing me, I was referred to a new doctor and the earliest appointment would be in three months. I thought well of course that happened. So for the last two and a half months I have become best friends with the certified medical assistants who have been my bridge over this doctor-less sea of side effects and dosage problems. Insurance issues and complete frustration and loss of faith. If you ever see a CMA give them a hug. I don’t know what I would have done without them.
All is not lost however. I found out that this new doctor is an osteopath who specializes in treating people with psychiatric conditions using a combination of traditional western medicine and alternative natural remedies. Hallelujah! Praise the Lord! I may have hit the jackpot! I have been praying for this since I got sick. Because there are not just these diagnoses that hang over me like a witch’s cloak. I have polycystic ovarian syndrome. At the time I was diagnosed with Bipolar 1 I was suffering extreme postpartum psychosis, WHICH can last UP TO THREE YEARS. I also have uterine prolapse so I only ever go two to three days maximum without bleeding like a stuck pig. I also have cysts all over my thyroid so prominent you can see one of them sticking out of the side of my throat! Hmmm. How many conditions could the side effects of what I am going through mimic? How many doctors would want to throw pill after pill at me clueless as to why they don’t work? I’m not saying I’m not bipolar. I really don’t know where I fall on the spectrum of mood and mental disorders. I’ve learned that a pregnancy can shift a mild case of bipolar 2 into a severe case of bipolar 1. I do have many of the symptoms. I also have many of the symptoms of the other conditions I’m suffering. So who knows and really I HATE labels. We’re all humans dealing with different levels of hardship and whatever you call yourself, judgment and stigma must be erased from our vocabularies.
What I’m trying to say is that there may be more ways of treating your condition whatever it may be, beyond just pills. On top of pills. On top of pills.
I know I’m not alone. That’s why I’m speaking out. In the Netherlands their schizophrenic people remain integrated into society. People treat them with kindness. The reorient them into reality as a whole, as a group, rather than locking them away. Studies show they get better! They regain their grip on who they are and what is real. Now I can’t say that would work for everyone. It would be amazing but this society is so diversified and disconnected I have a hard time believing what works in a homogeneous social system would work here in the melting pot that is America. But the lesson is in their lack of judgment. The person is sick. Not evil, not gross, not to be shunned and avoided. Just sick. That’s all. It’s so simple.
When I was hospitalized I went on social media and asked for visitors. I asked for flowers. I let everyone know where I was and that I was lonely for companionship. One loving couple came to see me with flowers and a balloon. My aunt Nycki and Uncle Tom. They brought a card for Alice. Do you know why they came? Because their son suffers from a mental illness and they were not afraid of the behavioral health ward. Which by the way is calm, clean, full of loving nurses and good people. People who are ill just like anyone else. There are children and husbands who come and spend time with their mothers. They bring games and cookies. They bring the freedom of the outside. Their are girlfriends who come to see their boyfriends with paper bags full of sweatshirts, headphones, love letters. They hug each other. Long embraces. Everyone looks away as the tears roll down their cheeks. Usually one of the older female patients will bring tissues. Sometimes a tiny carton of juice. Of course there are the patients who sit in their rooms during visiting hours. Because no one is coming. That was never me. Even though none of my friends came, my aunt and uncle did. And my family was there for every visitation. I even had a birthday cake with real candles in my room surrounded by them. Another Aunt and Uncle sent flowers. A dear friend from high school sent flowers. He was in Hawaii and unable to visit. But he made sure to let me know he cared. But none of my friends came. Most of them ignored my obvious distress. I thought to myself here I am in the hospital, having been diagnosed with a disease deadlier than cancer and hardly anyone seems to care. But that’s how it is. People hear the word bipolar and they want to get as far away from you as possible. Women hide their postpartum conditions out of the very real fear of judgment. And then they end up in the hospital crying over why it has to be this way while their visiting babies fill up the ward with their sounds of new life.
For all of these reasons I sing out my story. I tell anyone who will listen about what I’ve been through, what I’m going through and what I have yet to overcome. I don’t do this for myself. I do it for my children. For my daughter who will have her own children one day and may suffer as I did. I do it for all the other people struggling under the weight of their diagnoses, their medications, doctors who don’t listen, friends who don’t care. I will never be quiet. And maybe just maybe things will change.
Doctors forget that these are our lives. That even a single memory is a priceless thing and to spin the roulette wheel with our minds is a cruel practice.
Tonight is one of those sleepless nights. Those toss and turn, mind racing and won’t turn off, husband snoring kind of nights. I don’t mind it for some reason. I just want to write anyways. I’ve been talking with my son. And not just talking. I’ve been listening. He is the type of child with a lot to say. At first you might think all he wants to do is talk the paint off the walls. But if you really listen to him, really listen, you realize he wants to be part of the conversation. The greater conversation. The one the adults are having about the world. About the way things are changing. About the political scene. He doesn’t want to just sit back and listen to rap music and eat hot pockets. Well, sometimes he does. But he also wants to listen to Ted Talks and podcasts about scientific experimental treatments for PTSD and Opioid addiction. He wants to learn about political systems and how they affect the way we live. Why the world’s government’s don’t work. He’s vocal and opinionated and not always right but it’s better isn’t it? That he cares? That he’s learning? Isn’t that what we want from children? To challenge us? To force us from the complacency of sameness with the wild and wonderful phrase “What if?”
What if that which we have always thought to be true was false? And it took a young, free-thinking mind to ask the necessary question “What if?”
He was talking tonight about experimental treatments with MDMA and Ecstasy and the success they are having treating anxiety conditions, OCD and PTSD. He was saying it’s groundbreaking. Like any parent my first response was to convince him that was hype for drug users and nothing worth his time but the more I talked to him the more I realized how informed he was and that he did know what he was talking about. “Mom.” He said. “This isn’t about going to a concert and getting some soda laced with God knows what. That shit can kill you and in fact it is killing kids, because that isn’t pure MDMA or ecstasy. It’s low grade nightmare shit with whatever inside it and it’s really sad because kids have no idea.” I’m talking about actual clinical scientific trials with pure substances used in a controlled environment on subjects who are experiencing relief for the first time in their lives. Mom I’m telling you if you want good drugs, go to the scientists.” I had to laugh at that one because he was right.
My son knows my struggle with medications. He knows I feel like a fat guinea pig they just stuff one pill after another down my throat. He knows I feel like Alice in Wonderland never knowing what my body will do next, one pill will make me grow fatter. Another will make me pace around the room. This pill will take away my appetite but my hair will fall out. Still another will make everything taste faintly of metal. And the treatment of all treatments is they could attach electrodes to my brain and send currents of electricity through my grey matter as a last ditch effort (yes, actually electrocute my mind) in the hopes that my thoughts would be shocked into compliance. Of course there is that pesky little side effect of memory loss. Memories like the scent of my first born child’s head when they placed him in my arms for the first time. The sound of my mother frying bacon on Sunday mornings as a little girl. The feeling of holding my father’s hands as he walked to the liquor store. I always got to pick out a lollipop. My daughter’s middle name. How as a baby she would cry incessantly unless I played Fiona Apple’s Extraordinary Machine over and over and over while I wore her in a sling. The first time my husband held my hand, kissed me.
I’ll never forget sitting there reading about how sometimes you lose your memories for a time but they come back. However in many cases they don’t. My doctor was so confident my memory loss would be minimal. But what does that mean? Which memory isn’t worth keeping? My mother’s genuine loving smile at my first piano recital when I hid behind the garbage cans? My oldest son deciding to take a bath in the middle of his fifth birthday, ignoring all of his friends? My youngest son carrying around a red velvet notebook he got from his teacher at Butterfly daycare center writing little notes and pictures long before kindergarten? That he was born with blue eyes?
Doctors forget that these are our lives. That even a single memory is a priceless thing and to spin the roulette wheel with our minds is a cruel practice. I have had enough of being a plaything for the ignorant. My body is not a toy. I am not a lab rat. I am done swelling up like a sad balloon, I am done being too exhausted to play with my daughter and I am done swallowing pill after pill after pill. By the way these pills are prescribed only 30 at a time at all different times with no refills from a doctor who works only one day a week from an office that takes up to a week to refill them and she has to sign off on each one through insurance that won’t pay until two days before they are due so that I’m constantly on the phone with either the doctor’s office, the pharmacy or the insurance company and I’m constantly getting lectured about running out or trying to refill too soon or any number of stupid and demeaning things they like to say to me on a regular basis, every single month of my life. I literally can’t take it anymore. And it makes me so angry because this is how patients fall through the cracks. It’s not the patients its the goddamn overmedicating doctors who just stop paying attention.
You know when I feel happiest? When I run my fingers over flowers that have just bloomed in my garden. When I clip my basil and put it in the sauce I’m making for my family. When I discover the first rose of the season and clip it and put it in a mug and it smells like heaven. When I make my son and I chocolate mint tea from leaves I grew. When I am surrounded by the quiet harmony of the life my mother and I created from seeds we started on folding tables in the great room of the house.
Do I still have bipolar? Yes. Do I take a medication called lithium? Yes? However I asked for it specifically because it’s an ancient natural remedy. People have been bathing in lithium waters for centuries to help find balance. It’s a salt. I do feel sometimes all this other shit I’m taking is not helping me at all. However I remember that I am bipolar and bipolar people hate taking their medication. Let me say that again. Bipolar people HATE taking their medication! The sad fact is that many of us do need those meds to keep from flying off into truly frightening states of mind. I have been there. I cannot deny that. This being said my opinion does matter. How I feel and what is happening to my body is important. My doctor and I must work together. My healthcare is truly a joint venture, not just one individual’s responsibility. It is possible to take less medication but that means it needs to be under my doctor’s supervision and with her consent. In addition I need to do my part here at home. I need to eat well. I need to sleep enough and consistently. I need to make sure my environment is peaceful, positive, stress-free. I need to go to therapy and talk about my feelings even when I’d rather hide under the bed with my cat.
When I’m in my doctor’s office and she’s asking me how I’m doing and prescribing me these pills I hate, if I don’t use my voice, if I don’t share my pain then I have no one to blame but myself. One of the many things I have learned from my son is that when something is not working he is NOT quiet about it. And as a result he gets his needs met. I need to take a page out of his book. Wishin’ and hopin’ and prayin’ and dreamin’ isn’t getting me very far. The time has come to be my own hero. It’s what I’d tell my daughter to do. Sometimes no one comes to rescue you and you have to pull up your boot straps and rescue yourself.
I don’t think I stopped holding my breath until I saw their beautiful welcoming house reminding me I was still myself. That yes this was a nightmare but it was one I could wake up from. One I could escape from.
I remember the day I told Ian I was leaving him. He begged and pleaded with me not to go. He said he’d buy me house. Was it a house I wanted? I almost laughed. “A house? Are you serious? You had eight years to get us out of this bug infested trailer that is crawling with mice and smelling of shit! Eight years to treat me like a human being you loved as opposed to an inconvenience. Eight fucking years to give a shit about my dreams, my sacrifices. What have you ever done but act like the world’s biggest child? What kind of a man makes his wife chip ice at nine months pregnant so she doesn’t go sliding down the steps in a painful, dangerous heap? What kind of man leaves cords and wires snaking through the hallway and living room and instruments all over the floor for his pregnant wife to trip over? For his toddler son to chew on? What kind of stupid selfish man builds a wall out of manure in the kitchen so he can record HIS music. Not a man at all. A child. A selfish, immature, spoiled child who was indulged, spoiled and catered to by his mother!”
“I can change, things can change!” He was desperate.
“Ian it’s too late. I’m done. I’m done with this whole ridiculous farce. How dare you tell me you’re only married to me for the children! How dare you leave me night after night in this shithole to go play pretend with your brothers like the world’s greatest older brother as though you never left and had kids! I’m sick of your childish bullshit and I can’t take it anymore!”
“I heard what you told Rita. I heard everything! It’s HER fault all of this is happening!”
“No Ian, it’s your own damn fault. You have no one to blame but yourself. You cannot treat your wife like a piece of garbage and expect her to stick around and start to smell. I’m better than this, I’ve been better than this for a long time. I gave you eight years to grow up and you refuse to. So I’m leaving you and there isn’t anything you can do about it.”
“I refuse to be the first one in family to get divorced!” He had stood up by then and crossed his arms.
“Oh really? I didn’t know it was up to you.” I said this and walked out the door.
Of course what I didn’t realize then was that I was escaping. I hadn’t found new love, on the contrary. I found what I thought was a way out. A way out of the cult, a way out of Ian’s crazy family, a way out of feeling like a piece a garbage left out in the street to rot. But it wasn’t love. It wasn’t even lust. It was a haven for at least a little while. I thought I’d found a friend. And I had. For at least a little while.
I remember the first time I met Janine. There were no fireworks. No indications of what was to come. It was simply a hangout with my friend Rita as was the second time we met. The third time however we decided it would be fun to drink whiskey. After that all bets were off. One drunken kiss and I knew I could never go back to my old life. First of all I’m not any good at clandestine behavior. Secondly It would have felt seriously wrong to have continued in my marriage without telling Ian bluntly what had happened and that it was a catalyst but only a catalyst. The change was already on the horizon. I needed my own life. I needed to make my own mistakes even if they were big ones. I needed my freedom. The fact that Janine was a girl seemed unimportant to me, she was much more of a man than Ian in both looks and attitude. At that time she was what I needed. I told her it might be an entire year before we could become a couple. She said she was willing to wait. I found that charming in an old world kind of way. In the early days she was the easy part. Leaving Ian proved to be a complete and utter nightmare. He had stored up inside of himself all of the petty vicious rage of his entire life and directed it at me. It was like a gust of hatred set to blow me across the globe. Just before the hate-wind he had a few last ditch efforts to try and “win me back.” As if you could win someone back who treated you like a hated sibling instead of a wife. He would literally take the bed sheets and blankets and wrap them around himself and then hold his arms down so I would be forced to hunt for another blanket rather than fight with him. It was that kind of immature behavior I could no longer stomach. That and his relentless teasing. He teased me until I cried on so many occasions. Unforgivable.
Anyways one of his bright ideas to get closer to me and understand me was to watch the movie Brokeback Mountain and hold hands. I found the movie depressing and nothing I could at all relate to. He just cried and sweated into my hand. I felt like throwing up. Another attempt was to take me before his uncle and his cousin who used to be one of my best friends and have them try to convince me I was making a mistake by quoting the writings at me. Yes I sat in their kitchen while the man I’d known my entire life told me I was mentally handicapped for being bisexual and that homosexuality is like alcoholism but can be overcome with prayer. Gee thanks uncle Gary for calling me retarded. Gee thanks Lindsay for agreeing with him. Ian I hate your guts even more get me the fuck out of here.
I ended up moving out to my parents’ house in the valley which coincidentally is where I live now. My sons love this house, it was their haven in the turmoil. Ian would call me on the phone, cursing and spitting like a lunatic screaming at me that I was a home wrecker. “Do you know where your soul is?!!” I would just hang up the phone. He would call when the kids were with him, when he knew I would be with Janine. Sometimes I’d just give her the phone and let her deal with him. I don’t like conflict, never have.
I wanted to keep things easy, to work things out without lawyers or fighting or a ton of money spent but Ian made that impossible. He locked all my things up and refused to give them to me. Some things I still haven’t gotten back which I attribute to his less than sane and endlessly competitive second wife. He never wanted me to have the kids as if somehow I had suddenly turned into a bumbling idiot unable to care for my children any longer. He was constantly harassing me, every time there was a transition he had more terrible things to say. Jaden who was four at the time would tell me “Daddy says you’re a home wrecker. What’s a home wrecker?” I would just scoop him up and tell him it’s a grown up word and best left to the grown-ups. The hardest part of that time was not lashing out at Ian in front of the kids. But I knew it would come back to haunt me. Their teenage years proved to be MUCH harder in that respect. Teenagers are in your business and they rarely let you off the hook for anything and will drive you to the end of your willpower. Sometimes the truth just falls out and not necessarily in the best way. But when those boys were little my stock answer when they came to me with their father’s obvious hatred of me was I’m sorry he said that sometimes people feel upset and they say things out of anger. I’m sure when he’s not so upset he feels differently and that type of thing.
After the divorce was long past and we had established week on week off custody Ian remarried. Unfortunately for all of us she was a sick and manipulative woman. I of course had no idea how sick and manipulative she was until they separated and it all came out. I’ll give you one example. The Monday box. The boys transitioned to my house on Mondays. Apparently she had them put all their too small clothes and clothes with holes in them into this box. And then sent them to school in them, knowing I would throw them away and replace them. Who uses a child like that?!! That was just one of her many tricks.
I of course was going through my own hell by this time. What I didn’t know at the beginning but soon found out was Janine wasn’t entirely sane herself. She confided to me she was diagnosed with borderline personality disorder. This is no small thing and I lived it. There is book written about living with someone who has this disorder called Stop Walking on Eggshells: Taking Your Life Back When Someone You Care About Has Borderline Personality Disorder by Paul T. Mason MS & Randi Kreger. That book became my bible. According to the Mayo Clinic symptoms include “emotional-instability, feelings of worthlessness, insecurity, impulsivity and impaired social relationships.” The behaviors may include “antisocial behavior, compulsive behavior, hostility, impulsivity, irritability, risk-taking behaviors, self-destructive behavior, self-harm, social isolation, or lack of restraint.” The mood of someone with this disorder swings from “anger, anxiety, discontent, guilt, sadness, loneliness and general massive mood swings.” The individual may also experience “depression, distorted self image, grandiosity, and/or narcissism. Thoughts of suicide are common.”
I can say that is an avid and accurate depiction of someone with borderline personality disorder. What they do is entice you with seemingly loving and healthy behavior. To them you can do no wrong, they put you on a pedestal and will do almost anything to make you believe you are safe with them, that you can be happy with them. Then slowly they indoctrinate you into a system of fear and control until you no longer trust your own instincts and rarely does someone extricate themselves because the borderline excels at manipulation. Janine was crafty. She could absolutely control her behavior, she never let the kids see it until the end, when she realized she was losing her hold on me. Some of the things she would do to me: isolating me from my friends. Cutting up my clothes with scissors. Punching holes in the wall. Punching the wall next to my head. Peeing in bottles and leaving them in my car. Cutting herself with knives and razors. Raging through the apartment destroying things while I hid in the locked bathroom with a shaking dog. Throwing a bicycle at me while I sat on the couch. Throwing cans of soup so hard at the front door they stuck in the door and the dog ran away. Throwing herself on the ground kicking and screaming while we were walking the dog so I walked away and when she finally realized I wasn’t falling for that toddler-like behavior coming home and accusing me of being heartless. Scratching her face up with her own fingernails. Throwing fits at my work, lurking around scaring my coworkers. Etc, etc, etc…the list goes on and on and on.
I tried to leave her once and poor Jaden who knew nothing of what was going on and only wanted stability begged me not to so I stayed hoping things would things get better and instead they got worse. She started to rage while the boys were there. I took to sleeping on the floor of my sons room when she attacked me. She was quite simply a terrifying person. By the time I knew I had to leave I was so broken down I needed help. She had erected a tent in the middle of the living room with a padlock on it and I had no idea what was inside. I thought about the stories she told me about how she was part of the black block and snuck illegally into Canada as part of a protest movement. I remembered how she lived in a tent in the woods alone for over a year. I remembered her obsession with serial killers, how as a teenager she painted her walls black and plastered their pictures all over her black walls. I remember her telling me she would walk the city streets with a german shepherd and a baseball bat. Shortly after she set up the tent she took bright blue duct tape and wrote the words BE HAPPY in crooked letters. I knew it was now or never. She’d never let me go. I rented a U-Haul, and two friends helped me throw my stuff in it overnight as fast as we could while she was working a double and we drove it out to my parents’ house in the valley. It was the most terrifying thing I ever had to do in my life. I don’t think I stopped holding my breath until I saw their beautiful welcoming house reminding me I was still myself. That yes this was a nightmare but it was one I could wake up from. One I could escape from.
I don’t like to think about what could have happened to me, to my children had I not literally run for my life. There is so much more to tell, about dealing with Ian’s second wife, about learning to truly be a single mother and navigate the horrors of public assistance. About finding myself amongst the rubble of my ruined relationships. About learning how to relish in my sons, my independence and my own inner strength I never even knew I had until it was put to the test. I have a long and adventurous tale to tell but for now I’ll leave you with these words of wisdom.
You never know how strong you are, until you overcome your greatest failure. Which really is just a stepping stone to success.