This is how it started: Pregnancy. Now, you may guess that a hormonal tsunami could turn my body into wreckage and you’d be right. I’m not the first woman to get pummeled by the swift waters of pregnancy and I won’t be the last. What you might not guess is that despite knowing this, a doctor specializing in these particular imbalances would proffer benzodiazepines as a cure for hormone induced insomnia. You might also be surprised that my first script would be written for an amount usually reserved for those having grand mal seizures. This particular doctor’s reasons boiled down to a simple point: These drugs, he stated at our first meeting, are amazing.
Now, just to clarify, I didn’t get to the benzos until after the pregnancy. I started taking them exactly three months after my daughter was born. This was when, in a state of somnambulant pathos, I entered Dr. Amazing’s office. The insomnia had lasted through my pregnancy and into the dreamtime of caring for a new baby. I was at the height of female vulnerability: I was caring for both Cassius, my eighteen month old graced with a genetic roll of the dice called Down Syndrome, and my three month old daughter who carries the normal number of chromosomes. I’d slept maybe 3-4 hours a night for over a year. Cassius still couldn’t walk and required weekly physical and occupational therapy. I was supposed to be in a milky, post birthing joy but I was approaching sleep psychosis. Add to this my post-partum hormonal cocktail and you’ve got a perfect recipe for medical compliance. I walked into Dr. Amazing’s office so crushed, so tired that I wanted to ram my head through a wall, and sure that this doctor would know how to deal with a new mother’s hormonal ululations. I left with a prescription for 2mg of Ativan, having been convinced that the drugs were benign and that my hormones were better left to their own devices. With time, he told me, your hormones will regulate themselves. At that point, because of my desperation, I overlooked my typical habit of researching whatever drug might be offered. Dr. Amazing had promised that I would sleep and that the drugs were not very addictive.
When you want to get off them, it’ll be like getting off coffee, he’d said.
I can do coffee, I thought. Ativan it is.
Regulation of my hormones did come, as did extreme dependence. By the time my daughter was nine months old, I was swallowing 6mg of Ativan nightly, doctor recommended. And while I’ve chronicled my spiral into a benzo inferno in previous posts, what I haven’t ventured to explore is how my dependence and withdrawal intersected with being a mother. And this, to be sure, was one of the most crushing aspects of being dependent on those bitter pills. At the time my children needed me the most, I was waging a war for what I felt was my very life.
Tracking the timeline is difficult even now. I experienced profound cognitive disability, as if I’d wandered into the Irish moors and could only slog from swamp to swamp, cloaked in a fog thick enough to swallow light. What I do know is that I received my first script of Ativan in January of 2010. By July of that year I was up to 6mg of Ativan a night. I took this amount, a powerhouse sedative for my slight five- foot frame, for fourteen months. I’m not sure when the withdrawal tolerance set in (withdrawal symptoms arising from the fact that the person has reached tolerance to the medication, often occurring in just weeks), but I remember 2011 only as a time of fatigue coupled with bouts of fury and utter despair.
In February of 2012, I found a family practice doctor who happened to specialize in benzodiazepine withdrawal. We decided that I’d take the next three months to prepare for what would likely be a year long process. Or more. Shortly thereafter I met with a therapist and Sage Man who did not beat around the bush. We discussed the lack of cultural support for any detox that doesn’t meet the time allotted by insurance companies. We discussed the fact that I could be highly unstable during this period, never knowing exactly when my teeth would stop aching, when rage would come, or black hole depression, suicidal ideation, panic attacks, jelly legs, confusion or a malaise that I’d only read about in dark novels of the French symbolist era. It seemed impossible. I was completely dependent on these drugs – not to make me feel good, not even to make me feel normal, but to keep me from hitting a William Burroughs stride that would make even that surly gentleman raise his eyebrow.
Sage Man offered an out of the box proposal: Find friends to stay with. For three months … maybe more. At first this seemed ludicrous. I had toddlers in diapers. I had a baby with special needs. His sage-ness seemed in question. Then he leaned forward. His eyes were that kind of blue reserved for deep glaciers.
You need a refuge, he said. If you don’t find one, your marriage may not survive and your children may feel your instability. They won’t understand it, but it could be a seed of fear that lodges inside of them.
He talked for a long time and the more he talked, the more I understood. My instability on all counts was too hard for everyone, myself included. We needed help and I needed a place to go to be as sick as I really was. This was the first paradigm shift that we needed for me to begin my path back to health. The second was a space-time paradigm shift. Nothing would go the speed I wanted or anticipated. Period.
I’ve broken down my withdrawal experience into three components: The Place You’ve Got When There’s Nothing Left to Lose; Partial Re-Entry; The 99th Mile.
The place you’ve got when there’s nothing left to lose should feel good. It should feel as close to home as you can find. It should be a refuge. For me, it was the home of friends who were just a few miles from my home. And the possibility of staying there only came after I’d made the paradigm shift. I could leave. It was better to leave than to stay in my strained marriage, trying desperately to appear normal, sobbing in the car and terrified that my children would know something was wrong. I could leave. I needed to leave. Jed and Elso are open, immensely hospitable people and Jed is a doctor. If something scary happened, he wouldn’t freak out. They’re buoyant and solid on all counts. I was incredibly lucky. Chase and I asked and they said yes. It was as surprisingly simple as that.
And while I lucked out, it isn’t always this simple. Kind-hearted friends don’t always live just a few miles away. What I want to offer is that this kind of withdrawal doesn’t fit any of the in-and-out detoxes so prevalent in our culture. There’s simply nothing like it and by and large we haven’t met that complexity yet. We have to piece together some way to find safety and structure during a process that doesn’t garner much public support. If you’re single, it may be a bit easier. If you’re a parent, the complexity has the potential to amplify exponentially. Sometimes you’ll find what will feel like the most perfect solution given the circumstances. Sometimes you’ll scrap together pieces that feel held together with chicken wire and bubble gum. It’s likely that there will be many phases, some offering greater ease than others. The challenge is in meeting each phase with what’s realistically possible. Phase one was, for me, as close to perfect as I could imagine. Phase three (I’ll get to that later), has felt like a crawl through the mud. I’ve adjusted and adjusted again. There’s no clear path. We have to bushwhack and meet reality with as much creativity and pragmatism as possible. None of it’s easy, but all of it’s necessary.
In the few months it took to set up my home away from home, I continually took Cassius (4) and Jonquille (3) to Jed and Elsa’s house. They met the dogs, Chocolat and Apricot. They played with the teddy bear in what would be my room. We had dinner a few times. In essence, I brought my friends and their home into my children’s world in a very tangible way.
When I made the move, in May of 2012, Chase and I had brought in his mother and had put the kids in daycare. Everything was set. I knew that there was no way to gauge what my withdrawal process would be like. What I did know was that my kids wouldn’t be subjected to it. I planned on being home morning and evening if I could. If I couldn’t, Chase and my mother-in-law could give Cassius and Jonquille the love they needed and I could writhe in my own little corner of the universe.
I stayed at Jed and Elsa’s house for just over six months. In that time, I switched to an equivalent dose of Valium (6mg Ativan = approximately 60mg Valium), tapered down to 5mg Valium and saw my kids everyday. The withdrawals were brutal. I woke at 6am to get to my house by the time the kids woke. I made pancakes. I drove the kids to daycare and then I walked as long and hard as I could to plug some happy chemicals into my brain. I cried daily. Jed and Elsa hugged me often and left me alone when I needed to be alone. Chase and his mother worked around one another, but there was a shared sense of purpose: stability. At night, we all ate together and Chase and I would read Cat in the Hat to the kids. Everything seemed to be working fine until Jonquille began waking multiple times at night. We tried night-lights. We tried superhero stickers. We tried monster spray and sentries and fairy godmothers. Finally, one night as I was putting her to bed, she looked at me with her big, teary, cinnamon girl eyes and asked why I left every night. My heart skipped an anguished mother beat. Benzo sadness surged up. I forced my eyes to steady and told her that I was just a little bit sick, but that I felt so much better when I went up to Jed and Elsa’s house. It took a few talks and another few visits to my room, but soon thereafter, Jonquille began sleeping through the night.
Partial re-entry happened before I was ready. I wanted to be done, but I wasn’t done. I’d hit a wall of insomnia that forced me to hold my taper for a month. Then two things happened that forced the first of many shifts. The first shift was the departure of Chase’s mother. She had her own life and had given us a good portion of it. After six months, she left to help her own mother in Kentucky. Our second surprise shift was a heartbreaker: Cassius was kicked out of daycare. We had thought he’d been doing fine but this wasn’t the case at all. People with Down Syndrome can have some difficulties with what’s called sensory integration. Too much stimulation (think gaggles of children bouncing off one another), and they go into fight or flight. Cassius had been running himself into walls, pounding his little towhead with fisted hands. The kind folks at the daycare were at their wits end. They simply didn’t know what to do. As someone who’d experienced over a year of withdrawals, I more than understood. Cassius was done. He needed out. And now.
I moved back to my house and slept on a couch in the office. I was too sensitive to sleep next to anyone, my neural wiring so over heated that the slightest movement or noise would wake me. After six months, I was still far from done. My perfect situation had changed. I was full-time mama again. The next few months can be likened to one of those indoor, carnival bumper car rides. You get in and there’s nowhere to drive but into other cars. I managed to drop two more milligrams before the stress of full-time caretaking got to me. I stopped sleeping. Again. I was looking, as a friend said, “eating-disorder thin.” Chase did his best to heft more of the parenting but as the one who’d become the sole breadwinner, his time was limited. And, truth be told, he had compassion burnout. We both did. I was as sick of this iatrogenic illness as he was, but it didn’t matter. We were in a no exit situation, in a boat with the waters rising. I held my taper again. Every night, it seemed we sat on the couch talking about how long the rest of the withdrawal could take and how we could do it. The added difficulty was the knowledge that even when I got to point zero, my brain would require an unknown number of months to completely up regulate. Our no exit had no known ending. Both of us worked to take one day at a time. I worked to take one minute at a time. I’d often drive Cassius one-hour north to a hot springs that was nearly deserted. We’d float, watching the mist rise over the water, and I’d cry on the way up and on the way back. The car, at this stage in the game, had become my place of refugThe 99th mile is a reference to the last mile of a 100-mile ultramarathon. Years ago, as a magazine editor I’d written about people who were insane for running. I’d read the section of Dean Karnazes’s book Ultramarathon Man where he describes hitting a wall of pain at mile 99 of the Western States Endurance Run. That last mile was on pavement. Karnazes’s legs were nearly useless, so he crawled up the middle of a dark road. He collapsed in front of an oncoming car, and what happened afterward can only be described in mythic terms. The car screeched to a halt. Karnazes, defeated and slumped on warm asphalt, began growling. He describes it as if he awakened out of a dream. Karnazes jumped up, shook his arms and legs wildly, growling and shouting, “I can!” He ran past the startled couple in the car and when the pain came, he leaned in. He hunted it down. His beliefs about himself, his entire history, were erased in that moment. From that point on, nothing in his life would ever be the same.
I’m currently in the last mile of a one hundred mile race to save my life and become the mother that I want to be. I’ve tried twice to drop from 3mg of Valium to 2mg of Valium and each time I’ve been bruised and shaken by days and days of insomnia. My body during these times feels like it’s filled with broken glass. I’ve talked with my doctor over and again and with each setback we decide to go slower. And there’s no other choice. Some days I’m on my knees, holding Cassius’s hand as we go to the car to take him to speech therapy. I’m on my knees to pick a sobbing Jonquille off the floor because Cassius isn’t handing over her little lion, Simba. I’m on my knees laughing because Jonquille makes little faces just like mine and every night she pulls up my shirt to say she wants “a little bit of sugar” before she zooms in for the tickle kill. I’m on my knees, slumped but I’ll never give up. And when the pain comes, I try to lean in. Because I will make it. I may have to crawl every inch on my hands and knees but I’ll get there. I’ll get there so I can go to every dance recital and every Special Olympics event there is. I’ll get there because an injustice like this will not take my life and my vitality. I won’t let it. And most importantly, it won’t take from me the experience of mothering my incredible children.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.