Part 3: Crashing
The only good thing about this time was that I couldn’t pretend I was healthy anymore. I gave up trying to maintain my career and switched to contract work that I could do from home when I was able. My parents came to stay with us, I completely let my guard down and let anyone who wanted to help me, help me. I also fully rededicated myself to psychiatry for several months. I accepted that I had a worsening anxiety disorder and would only be able to feel well with medication. I experienced bouts of anxiety and sleeplessness that were dealt with by nudging the lexapro higher, then the valium. This process resulted in akathisia so severe I was unable to sit still long enough to eat anything, with my toes and fingers flexing constantly and involuntarily. Somehow despite the symptoms I held on to enough inner strength that when the psychiatrist recommended seroquel, I said no.
No. I am not broken. I know who I am. I came back to the online forum and found a doctor recommended there. Slowly, very slowly, I got back on track. I tapered the lexapro. That was awful, but once I recovered I had even more evidence that it was the medications that were making me sick. When I began the last valium taper I was at a dose of 14 mg. I was so ashamed and full of despair but once I had made the decision that I wanted to stay alive, there was no other way than to taper once more. I cut 0.5 mg every week to 2 weeks from 14 down to 5.5 mg (with some three week holds when needed). Then I switched to 0.25 mg cuts every two weeks.
Looking back at my notes from the year and a half of tapering valium the second time I remember the advice my mother gave me once I let her know what was happening. “Pretend you are a mountain climber trying to get down a gigantic icy rock wall. Sometimes you will descend smoothly and land safely. Sometimes you will just need to hold on and close your eyes while the wind howls around you and you shelter in place. But you can always look back and see how far you have come. The way down looks terrifying, but you will take it as you did the first part of the journey, one step at a time.”
There were awful months. There were good weeks. There were the weeks I had to take my daughter to summer camp and the cheerful music that they played on arrival made me shiver inside and grit my teeth until I could run back to the car and cry before driving slowly home gripping the steering wheel to spend the day huddled on the couch. There were the nights I had to decide over and over that it was better to lie awake and still next to my husband than to walk out of the house and onto the train tracks. The day I came home and met the landlady in the driveway after a week of no sleep and she made me chamomile tea and put me to bed and I actually slept for several hours. The sheer terror of going to the grocery store. Fits and starts. Leaps and crashes. Getting down off the mountain.
The long awaited moment of freedom finally arrived. November 8th, 2015 will always be a second birthday for me. I was absolutely certain I would be one of the people who say they felt much better off the medication than on. I had tapered carefully. I had completely abstained from alcohol and caffeine. I exercised. I meditated. I had a positive attitude. I couldn’t imagine, and if I had I know it wouldn’t have helped, that I was launching into yet another abyss. The first week off was lovely, the second week off I encountered withdrawal symptoms much like what I had experienced during tapering. After the first month, withdrawal struck in full force.
Sleep became a dreaded nightly task. I would go to bed relaxed and exhausted yet all that happened when I closed my eyes was an amplification of the electrified tingling sensation and an unavoidable awareness of a bright light on in my head that wouldn’t let me find peace. Even during the day the sensations of pain, crawling/burning skin and brain shivering would be overwhelming. Meditation became an extreme sport: I see you pain, I see you fear. I see you and I accept you and I choose not to define myself by you.
Sitting with the agony and not running away was about as easy as watching my arm catch fire while cooking and continuing to make dinner anyway. It was often both a physical and a mental exercise since I had no choice but to get out of bed after a night of electric sleep and get the kids ready for school despite the storms going on in my brain. All of this was exacerbated by the looping, crushing thoughts of “What if it isn’t withdrawal? What if I am doing this to myself?” The only defense against these thoughts was to know that there wasn’t anything different to do either way. Just one more day. And then another one after that.
The first four months of benzo freedom were like going through a car wash without a car. Whap! Slam! Come up for air and then the rolling scrubber comes down to flay the skin from your back. Nothing was predictable and nothing was safe. A moment of tranquility could be replaced in the next breath with torment. Pain and fear careened across my body and mind without visible cause and without warning. Ever so slowly, and certainly not linearly, that agony was replaced by a phase I think of as drudgery. Days on end of moving slowly through a quagmire of pain and exhaustion, but without the intense chemical anxiety that came before. Then at ten months an inexorable slide into darkness began. The skin on my arms and legs felt like it was burning, my bones shook so that I began to crave stillness almost more than sleep. I invested in a weighted blanket, but while it felt good it didn’t stop the vibrating sensation. My right ear shrieked at me constantly. A bad night switched from 3 to 4 hours of sleep to 3 non-consecutive hours, with horrific one or two hour nights scattered in at random. I got through it by telling myself that surely, surely, this was the last wave before it got better forever.
It wasn’t. The long awaited twelve month anniversary came and the agony continued, along with the deep sadness of the one year milestone weighing me down. It was around this time that I stopped asking for help and reassurance. I was sick of myself and my story, how could anyone else possibly want to spend time in this wasteland? The only thing I could find to hold on to was the knowledge that my children would be worse off if I wasn’t here. On one lonely walk through my neighborhood I wrestled with the constant question “what am I going to DO?” I picked up a bright red maple leaf from the ground and the answer came to me “live anyway”. It was certainly true that I felt worse when I wanted life to be different from what was, but I could forgive myself for that wanting.
At thirteen months off I was still experiencing all that came before, plus the exhaustion of surviving those previous months. To make matters worse the 3 to 5 am deluge of nausea and dizziness intensified, leaving me clinging to the bed trying to focus my thinking on “I am breathing”. I desperately wanted to know how much longer because I thought it would be bearable if I had a goal. When that thought came I had to remind myself of the words of a beautiful success story I read online: “there is no knowing, there is only being and doing”.
A nadir is only recognizable in hindsight. Thirteen months was one. Nineteen months was another. Nevertheless, I persisted.
If benzo withdrawal were a movie, the heroine would meet the beast in battle and fight valiantly until he dropped, broken, to her feet. The music would swell, the audience would relax, only to have a clawed hand shoot out to grab her ankle. They would lock arms once more, ending with the beast stumbling backwards over the cliff never to be seen or heard from again. This is not that story. This is Hercules fighting the Minotaur, only Hercules is Sisyphus. One day a finger in an eye socket, one day a heel to the solar plexus, one day a chance to rest.