When Dorothy Gale of The Wizard of Oz started her journey down The Yellow Brick Road, she was terrified and, with the exception of Toto, completely alone. A girl whose life was turned upside down after an event that was completely out of her control, she didn’t yet know that the cyclone would bring unexpected gifts to her life. She didn’t know she’d make new friends and learn valuable lessons along the way; she was simply trying to survive. It was only later, when she felt safe and whole, that Dorothy was able to express gratitude to everyone who helped her as she limped along down life’s path.

As I tap out this post, I’m far from feeling whole, but I’m feeling well enough so that I’m able to look back at the events of last 9 months with the tiniest bit of ever-emerging perspective.

During the weeks I spent recuperating at my parents’ house last August, I paced the hall, occasionally stopping to look outside to the large picture window in their family room. It was summer – normally the season I love most – but during benzodiazepine withdrawal, I was unable to step outside to enjoy the sunshine for even a moment.

One particularly difficult afternoon, my parents’ footsteps seemed especially loud. My father had the television on full blast, and when I tried to calm myself by taking a hot bath, my mother barged in on me as I laid naked in the tub.

A few hours earlier, my mother and I had an uncomfortable exchange. She’d gone to the grocery store to buy a whole chicken and had made some homemade broth for me, which I tearfully refused. It wasn’t that I didn’t want what she had made – I did! I was starving! – but I simply couldn’t put anything in my mouth. I was sure that anything I ate was going to make my symptoms worse. When I tried to explain that I couldn’t eat the soup she’d made, my mother crossed her arms over her chest and gritted her teeth at me.

“Well,” she growled, “You can make your own food if you don’t like what I make for you.” Yanking open the refrigerator door, she pushed me toward the open compartment. I stood weeping, trying to decide which foods wouldn’t taste like poison. Everything seemed dangerous.

Standing in my mother’s kitchen, I panicked. Having already left my husband and son in hopes of finding a better place to heal, suddenly I felt I’d made a terrible mistake in coming to Syracuse. My parents did the best they could, but I needed more than they could give.

Something inside me understood I needed more than a house with a roof over it in which to heal. I needed love and patience and kindness. I needed someone to murmur encouraging words and tell me I was going to be okay.

Stepping into sweatpants, I put on my sunglasses and dared to walk across the street. As my bare feet touched the hot asphalt, I prayed to G-d the entire way, begging Him to let Gina be home.

I’m pretty sure Gina could tell something was wrong with me right away, but maybe she couldn’t. I certainly believed that anyone who felt as crazy as I did simply had to look the part on the outside.

Ever gracious, Gina pushed open the screen door and offered me a cup of tea. At that point, I was having weird fears and I confessed I was scared of tea. Without batting an eyelash, Gina offered hot water with lemon.

My hand shook the entire time we talked. I told her what was going on, that I’d stopped taking an anti-anxiety medication and that I was afraid I was losing my mind. I told her about my crippling insomnia and scary dreams.

Gina listened, remaining calm and reassuring. “Do you like massages?” she asked.

Nodding, I looked at the lemon floating inside my teacup.

Gina stood up, went into her kitchen, and opened a drawer. She copied a phone number on a tiny scrap of paper, which she handed to me.

“This place offers acupuncture and therapeutic massage and a bunch of other services,” Gina said, returning to her chair. “I think they even have a juice bar and a cafe with organic food.”

I stayed at Gina’s house for several hours that day and, again, the following day. Sitting in the safety of my old friend’s screen porch, the two of us beaded bracelets and talked quietly. Occasionally, we were joined by one of her cats or one of her children – but mostly, it was just the two of us.

Eventually, despite the fact that I was inexplicably terrified of talking on the telephone, I screwed up enough courage to dial the number on the scrap of paper and make an appointment for a massage.

Looking back now, I realize that asking my parents for help set me on a path: my old personal Yellow Brick Road, if you will. Making the difficult decision to leave my immediate family to take care of myself brought me to Syracuse, which brought me to Gina, which ultimately brought me to the next part of my journey, where I made another decision which saved my life.

At the time, I didn’t know I was on a journey.

I simply thought I was alone in Hell.

What I see now is that I  was never alone, for when we ask for help, the Universe always delivers a response.

What is a difficult personal challenge you’ve survived?

• • •

{Today, I thank my parents – Phil & Joan Schuls – for offering all they could to help me during some of my darkest hours. And I thank Regina Barnello Wright for answering the door when I came knocking.}

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I love children’s books. When my son was young, I delighted in introducing him to all my favorites, but I especially loved seeing his reaction to Maurice Sendak’s “In the Night Kitchen.”

The story features young, adventurous Mickey who stirs from his bed and embarks on a strange adventure. Young Mickey is thrown into cake batter, flies across the sky, and ends up right where he started — safe in his own bed.

I always thought fancied myself to be like Mickey: brave and curious, eager for new experiences and unafraid of where they might lead. But during acute withdrawal, the world was filled with monsters. Where I once appreciated Sendak’s idea of an ever-changing landscape over which one had no control, suddenly that lack of control wasn’t fun at all.

One of the monsters I battled was insomnia. Not only was I terrorized while I was awake, but I couldn’t escape my demons even when I closed my eyes. If I was lucky enough to fall asleep, I experienced horrifying vivid nightmares, causing me to jolt awake, my heart pounding in my chest.

One night, I journaled about my nightmares, detailing them in my black and white composition notebook. The next morning, I looked at my scribbles:

A fat, yellow caterpillar with a woman’s face writhes in a thick puddle of mucous in the middle of a dark room.  The creature wears a blonde wig perched crookedly on its head. I open my mouth to scream, but no sound comes out. I try to run, but the stuff on the floor is sticky, so I cannot move. The caterpillar-woman gurgles as she moves in my direction. Her mouth is no longer a mouth; it is a dark swirling cavity. I am surprised when she stabs me, since I hadn’t noticed her huge spiny bristle filled with some kind of clear fluid. Feeling my flesh burn, I realize I’ve been poisoned and, as my clothes melt into my skin, I can do nothing but wait for the creature to devour me.

You know how you feel when you wake up after having a single nightmare? That disoriented, terrified moment when all you want is to hold onto something solid. That moment where you look for reassurance from a person sleeping next to you?

That night, I recounted 9 separate nightmares.

I read about a man with pointy teeth whose fingers turned into knives. About dark, swirling water: the place my son drowned while buckled in his infant carrier. I read about fires and hurricanes and war and plagues and famines.

Each nightmare was darker and more catastrophic than the one that preceded it.

Even scarier? I barely remembered writing about them.

I spoke with my therapist many times while I stayed at my parents’ house, and she reassured me that I was on the path to healing, that my neural pathways had to learn basic things — even things like sleep — again after having been dulled for 7 years. That my healing would take time. She was encouraging, and I was prepared to wait it out.

But after nearly 3 weeks of little to no quality sleep, the exhaustion was killing me. Though I was terrified with the idea of taking any medication to help me rest, my parents convinced me to try some of the pills my doctor had prescribed.

I should have known better.

That night, I had a rare paradoxical experience. Much like the horror in many of my nightmares, I experienced a kind of “locked-in” syndrome, where I was completely awake and yet utterly unable to move or scream. On the outside, my body was still; on the inside, I writhed and buzzed with electricity.

When the effects of the medication wore off the next day, I wandered into the kitchen to find my parents. My father greeted my brightly. “Did you sleep last night?” he asked.

I looked at him with wide eyes. “No more pills!”

{This week, I express gratitude to Monica Cassani at Beyond Meds. If you or someone you know is hypersensitive to medications, check out her blog. You are not alone! I also need to thank Val Erde, who offered support from across The Pond, and to Marna Meltzer & Michelle Goldstein for offering me hope during my darkest hours.}

What monsters have you been battling recently?

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Part III of my account regarding my struggle to survive after weaning off clonazepam, a powerful anti-anxiety medication. To read Part I, click HERE. To read part II, click HERE.

• • •

When it became apparent that I couldn’t take care of my most basic needs, I called my parents and begged them to allow me to heal at their house, sixty miles away from my husband and son.

They agreed, none of us imagining the mess we were getting into.

On the ride to my parents’ house, I laid flat on the backseat, crying and shivering and praying. While they talked quietly in the front of the car, I felt every bump. Every swerve. Squeezing my eyes shut, I braced myself for the wreck.

My brain — off the anti-anxiety medication and in acute withdrawal — perceived everything as a threat. I was certain I was going to die on the ride to Syracuse, and I braced myself for the car accident that I knew would end my life.

I wept with relief when my father pulled into the familiar rectangular driveway. Returning to my childhood home, I saw little had changed since I’d left over 25 years earlier: the house was truly a time capsule. The exterior was still painted gray with white trim.  The bushes – always lumpy and overgrown – had fused together to become lumpier and more unkempt. Inside, the living room featured the same gold couch; in the kitchen, the same green carpet — now splitting at the seams — sprawled before me. Faded curtains covered the windows and dusty figurines stood at attention on the shelves.

During the first few days, my parents were happy to have me home. My mother ran to the store to buy me clothes, and she made me homemade chicken soup. My father rubbed my head, trying to get me to relax.

But I was jacked up.

Stuck in a fear state, my body shook uncontrollably all the time. Unable to sleep for more than an hour or two each day, I prowled around my parents’ house, like a crazed animal.

Historically, sleep deprivation has been used as a form of torture during times of war. Going without sleep is intensely stressful — with unpredictable short and long-term effects. When I got to my parents’ house, I was already suffering from visual and auditory hallucinations, but things quickly got worse. Deprived of sleep, I lost the ability to act and think coherently.

I developed new fears.

In the pink and green bedroom of my youth, I noticed tangled extension cords, into which my parents had plugged numerous gadgets — a clock, a fan, a cellphone, a television, a lamp, and stereo components — and I obsessed about dying in a fire that I was positive was going to occur as a result of the overtaxed electrical outlets.

I worried that I would be trapped in my bedroom over the garage. The windows painted shut, I worried how I would escape when the fire started.

My father tried to convince me I wasn’t going to die.

But fear isn’t rational.

One sleepless night, I roamed from room to room, upstairs to downstairs, until finally, I went outside to sit alone in the darkness. The air was thick and hot, and I was the only person outside. I wished for a forest or a desert – someplace I could disappear.

I looked up at the moon, full and round and white, and thought to myself: I know why crazy people stare at the moon.

Because the moon didn’t burn my skin or my eyes, not like the sun did.

I thought about how I’d always loved summer. How, as a teenager, I waited for the days to unfold like a fan. How, even just one summer prior – while my friends sat in folding chairs in the shade – I’d sprawled out on the newly blacktopped driveway like a weird heat-seeking lizard. I remembered how the asphalt felt hot on against the backs of my legs, how I loved to watch my winter-white skin turn golden brown.

I remembered the days when sleep came easily, how I loved to wake slowly, surrounded by the comfort of warm sheets.

In an effort to mute my despair, I pressed one hand over my mouth and sobbed on my parents’ front step in the middle of the night, in so much physical and emotional pain, I was certain I’d never sleep again. Or see another summer.

I actually can’t believe I survived the initial days of acute withdrawal. I really cannot.

I now know many people commit suicide during withdrawal.

I don’t know why I didn’t.

That’s not true.

Even in the most horrifying depths of acute withdrawal, I had a feeling that everything was happening the way it was supposed to happen. That G-d was with me. That the Universe was supporting me. That my suffering would one day make sense.

{I’m continuing to express appreciation to the people who carried me when I couldn’t walk. These people made me realize angels walk among us; they just happen to be disguised as humans. Today I am grateful for K.B. Owen, Jess Witkins, Rishi Hein & Blanche Fenster.}

I’ve spent the last 8 months healing after weaning off a powerful drug: one that was prescribed by a doctor. It was a medicine that immediately did everything I wanted it to do — until it didn’t. Like a good patient, I took my pills as they were prescribed — nightly for 7 years. What I didn’t realize is that over time benzodiazepines destroy the neurotransmitters in one’s brain. To read Part 1 of my story, click HERE. This is Part II.

• • •

Beginning in October 2012, under the guidance of my psychiatrist, I slowly tapered from 2 mg of Klonopin (clonazepam) daily to 0.25 mg. When I couldn’t reliably make cuts by hand anymore, I switched over to an equivalent dose of Valium (diazepam) and continued to wean.

Ten months later, while my doctor was out of the country, I became confused. I’d always followed her notes regarding how to withdraw from the drug to the letter. Ever the compliant patient, I noticed her written instructions ended at .5 mg of Valium.

I assumed that meant I was supposed to stop taking the medication.

You know what they say about assumptions, right?

Big mistake.

What I didn’t know was that my doctor had planned for me to continue weaning using the liquid form of Valium.

At first, I didn’t feel anything.

I remember doing a little dance the morning I took my last pill.

Because I thought that was it.

Two weeks later, on what started out as a perfect August morning, I sat in my friend’s backyard, quietly freaking out. I was jittery, my heart pounded, my teeth chattered, and my body buzzed. The world didn’t seem real. I felt like I was watching a movie unroll before me. “I’m not feeling right,” I said.

Nothing could have prepared me for the hundreds of horrifying withdrawal symptoms that began ten days after I took my last bit of Valium.

Suddenly, I was like a snail whose shell had been ripped off its back; I was utterly unprepared for what it was like to be so raw and unprotected. Everything was too much. The world was too bright. Too noisy. People’s hands were too rough. My spine burned. My gums receded. My muscles wasted away. I developed memory problems, cognitive issues, emotional issues and gastrointestinal problems – none of which were present before taking the medication.

I started to document everything I was experiencing in black and white composition notebooks. When I look back at what I wrote during withdrawal, I’m aware my words don’t come close to capturing my desperation. My hideous symptoms read like a laundry list. I’ll try to explain things differently here.

Imagine the worst flu you’ve ever had: the nausea, the diarrhea, the muscle aches, the exhaustion, the inability to move. Got it? Now add in the worst headache you’ve ever had: one of those doozies where the lights are too bright, the sounds are too loud. Occasionally, I suffered from brain zaps, which felt like someone touched my brain with an electric cattle prod. Electronic screens pulsed with a weird energy that hurt my brain. Got that? Now add in a urinary tract infection infection: involuntary spasms forced me to go to the bathroom dozens of times each hour. Even in the middle of the night. Got that? Factor in a never-ending insomnia. Every time I tried to sleep, I was awakened by a ringing in my ears. Or the sound of an imaginary door slamming. Or the sound of an imaginary train. Or muscle cramps. Sometimes I drifted off, only to awake a few moments later having had a horrifying nightmare. Now add in a crushing depression. I didn’t want to be sad, but absolutely nothing brought me joy. Nothing. Got that? Now imagine you’ve slipped a disk and thrown out your back. You know how awful that is, right? Well, that’s how deep my spinal pain was. Paradoxically, despite the pain in my lower back, I was unable to sit still. I sat criss-cross applesauce and involuntarily rocked for hours.

This went on for 90 days.

If the physical pain caused by stopping the medication was a journey to Hell, the psychological symptoms triggered by the withdrawal were equally terrifying.

Suddenly, all these intense fears I’d never had before bubbled to the surface. And while a part of me was aware that my fears were irrational, I was powerless over them.

I’ve always been a social person, comfortable speaking and dancing and generally carrying on in front of large groups of people; suddenly, I was certain everyone was looking at me and wanted to harm me. As a result, I became unable to leave the house and isolated myself for weeks.

Suddenly, I was afraid of the car. Driving was impossible, and it was equally awful being a passenger. Each time I had to go somewhere, I was certain I was going to die. I gripped the front seat, white-knuckled, and wept.

For a while, I developed hydrophobia. Normally a lover of a long, hot shower, I was afraid of water and avoided bathing for days.

Everything I put in my mouth had a weird metallic taste or smelled like cigarettes, and I developed a fear of food. I also lost a lot of weight and became dehydrated.

After two weeks of existing without sleep, I found myself alone and sobbing in the basement in the middle of the night. I crept upstairs and awoke my husband who had been fast asleep. I told him I was afraid and asked him to hold me.

“I can’t do this,” he said. “I don’t know what to do to help you!”

After my husband went to work, I squinted behind burning eyes, researching “benzo withdrawal” on the Internet. I was shocked to find entire websites and thousands of threads in chatrooms devoted to the topic. I called my psychiatrist’s office to inquire about what I could do and, the on-call doctor encouraged me to go to the Emergency Room if I thought I might hurt myself.

Somehow, I had enough sense to know that if I went anywhere I was going to be locked up, possibly restrained and probably poly drugged with all kinds of psychiatric cocktails. I worried ER doctors might reinstate the Klonopin, the medication I’d worked so hard to stop taking. That thought scared me to death.

I figured I just had to hold on until the withdrawal ended.

It can’t last forever, I thought to myself.

 

Some of you may have been wondering where I have been since my blog abruptly stopped back in August 2013. Let me assure you, I was not having a good time and this post is likely to be a rather harrowing read.

In order to explain where I’ve been, it’s necessary for me to provide a little background.

Almost 15 summers ago, I gave birth to a beautiful son. It was a traumatic delivery that culminated with my losing nearly 70% of my blood when my uterus didn’t contract. At that time, I was rushed into surgery for an emergency procedure. I should’ve know I was in trouble when I was still in the hospital after a week. I should have known I was in even bigger trouble when my insurance company agreed to reimburse for a personal care aide. My husband returned to work while I was still in the hospital, assuming I was perfectly fine with the assistance of the aide.

After 3 months, my blood was tested and it was determined that I was fine.

The reality was that I wasn’t fine at all.

My crippling insomnia was coupled with a horrible tightness in my throat that felt like I’d swallowed a pebble.

After years of struggling with little sleep and the feeling that my throat was going to close up, I finally went to see my primary care physician. We tried several antidepressants, each one revving me up more than the last. (I now know that some people have a paradoxical reaction to antidepressants; instead of calming me down, they made me even more anxious.) Eventually, my primary care doctor wrote me a prescription for a few little yellow pills.

All my symptoms magically disappeared with that first pill. Suddenly, I could sleep again. And I could breathe.

I was referred to a psychiatrist who asked me what hadn’t worked and what had.

“The last stuff I took was amazing,” I said. “I think it was called Klonopin.”

The psychiatrist opened the top drawer of his desk to retrieve his prescription pad. “Good choice,” he said.

Over the next seven years, no doctor ever suggested I should discontinue using clonazepam, that it is actually a medication recommended for short-term use only.

That the stuff does terrible things to one’s neurotransmitters.

Everyone was so casual about my clonazepam use, I never questioned its safety. I should have known not to trust anyone who promised Paradise in a pill, but I’d always trusted my doctors. There was no reason to think that he was prescribing something that could hurt me.

I couldn’t have been more wrong.

(NOTE: I’m so glad to be writing again. More about where I’ve been for the last 7 months to come. I’m doing this very slowly. In installments. With a lot of time to breathe in between because it’s all still very fresh.  Much gratitude to bloggers Misty’s Laws, Molly Field, Lisha Fink, Nina Badzin, Rivki Silver, David Walker, Kitt Crescendo, Ruchi Koval & Erin Margolin for their steadfast support over the last 7 months. Appreciation for my real life friends & family will be given in an ongoing way, for the rest of my days on this planet.)