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.