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.