It took many years from me to heal my brain after withdrawing too quickly from clonazepam, a powerful anti-anxiety drug.

How I wished there was someone I could see and talk to who had been through the experience!

I promised that if I ever got to the other side of this injury that I would do something to give back to those who are still struggling.

To that end, I am joining forces with Reverend Heather Elizabeth of Bye Bye Benzos, and the two of us will be co-facilitating a one-hour ZOOM call to talk about our stories as well as information about some of the modalities that helped us — and continue to help us — as we move through complicated trauma.

Participants may join with or without video at 11AM EST, but we must be able to see your real name. (People with “nicknames” will not be allowed into the call.)

Heather and I will join the meeting at 11:11AM EST.

The ZOOM call is 100% free, and there will be an opportunity for Q & A.

If you are interested in joining us, please go to Rasjacobson Art, LIKE my page & click GOING or INTERESTED and you will receive the link & the password on the morning of the event.

In the meantime, you can hear more about my story HERE and HERE & hear Heather’s story here HERE.

Today, I worked with a student who needed assistance with an essay. Intelligent and conscientious, this woman — let’s call her Alecia — makes thoughtful comments regarding the assigned reading material; however, because she writes the way she speaks – in urban English — her writing hasn’t been earning top-notch grades from her professor.

“I be askin’ him what he wants me to do,” she said. “He told me come here.’”

Together, we’re working to get her to recognize some of her most common grammar errors.

“I be writing like this my whole life!” She rolled her eyes toward the ceiling. “Gettin’ good grades, too. How come nobody teach me this?”

When she expressed frustration about not being able to consistently catch her grammar errors, I encouraged her to be gentle with herself. “You’re learning a second language.” I told her. “That doesn’t happen overnight,” I said. “It’s going to take practice.”

Practice.

In our instant-gratification world, we want to be good at everything today.

Right now.

But it takes time to learn new skills.

And people are creatures of habit.

We learn something, do it for a while, and it becomes second nature.

We can unlearn a behavior or a habit, but it takes time. The longer we behave a certain way, the longer it takes to change that pattern or habit or behavior.

Unlearning is hard.

But it is possible.

Over the last few semesters, Alecia has been developing her book smarts.

Meanwhile, after living in an insulated bubble for my entire adult life, with only minimal exposure to people from outside my predominantly white, suburban community – I’ve been developing my life skills.

Over the last year, I’ve learned:

1) It’s possible to live alone. For the first time in decades, I’m making my own decisions about everything: how I want to live, where I want to live, what I want to do for fun, the type of people with whom I want to associate. A homebody by nature, it’s really lonely without having anyone to come home to. I need to get a cat.

2) It’s necessary to make new friends. When my marriage ended, nearly all of my friendships died.  One woman with whom I’d had a 45-year relationship actually shouted at me when I cried about being separated.

“You’re going to have to figure out a way to be happy and stop complaining about how hard it is to be alone,” she hollered. “No one wants to hear about this anymore.”

It was a clarifying moment. There was no “I love you” or “I’m here for you” or “This sucks” or “What do you need?” or “You’re not alone.” I was crushed, and had to realize that – despite out long history – that person was not a supportive friend. So I’m meeting new people by participating in activities that I enjoy. I joined a divorce support group, several art groups, and I’ve invited people over to my place to play old-fashioned board games, to paint, and to talk. It takes a long time to develop intimate friendships, but I’m doing it.

3) I’m not conventional. Conventional people have jobs they attend mostly Monday thru Friday from 9-5 or any other combination that equals a minimum of 40 hours per week. They have a certain number of weeks of vacation days each year. They marry and have 2-3 children. They look for happiness in things and enjoy shopping and accumulating stuff like computers, cars, homes, and cell phones. They are born in one country and remain in that country their entire lives. They own many televisions and use them regularly. They say things like “Be realistic” a lot. They don’t question authority and believe in doing things the way they’ve always been done. They criticize people who are different. What can I say? I have minimalist values. I don’t believe in big corporations or big government, and I can’t bear the idea of doing the same thing every day. Being unconventional means having the courage to stand up for myself. It means doing out of the ordinary things and, oftentimes, going against social norms.

4) It’s important to invest in myself. Somewhere along the way, I stopped doing things for myself. I became the person who did the shopping and the laundry and the cooking and the cleaning – and I stopped writing and reading and painting and riding horses and playing on swing-sets. I also stopped laughing. I’m trying to connect with the person that I was long ago. She’s in there. Somewhere.

5) Having feelings is normal. For over two decades, I lived with a person who was unable to express love, sorrow or pain. Unwilling to cry, he physically left the room whenever I tried to discuss an emotional issue. He often called me “crazy” when I showed even the slightest bit of anger or sadness. With the help of a great therapist, I’ve learned that I’m not crazy. I’m a whole person who feels things deeply.

As far as I’m concerned, Alecia and I are both warriors: learning how to take what has happened to us, good or bad, think about it, and learn to improve from it.

What unlearning have you done lately? What new idea/practice are you incorporating into your daily life?

*STBX = soon to be ex

tweet me @rasjacobson

 

 

 

I keep remembering the powerful final scene from the film Schindler’s List, when Holocaust survivors give an inscribed ring to Oscar Schindler that reads: “He who Saves One Life Saves The World Entire.” After helping to save so many Jewish lives, Schindler expresses frustration that he couldn’t save more people.

“I didn’t do enough, “ he laments.

This is how I feel everyday.

Every day I speak to people who are going thru the horrifying post-acute withdrawal experience that I am going through, and I’m just…

Overwhelmed.

So many people kill themselves in withdrawal.

Why did G-d spare me?

What do I do with this gift of life?

I’m a member of several private Facebook Groups for individuals who are in the earliest days of the horrifying discontinuation syndrome associated with benzodiazepines like Klonopin, Valium, Xanax and Ativan. People contact me through my blog, via Facebook, on Twitter. I listen to people on the telephone, and I know how they are suffering.

People tell me I’m helping by writing honestly about my withdrawal experience.

But is it enough to simply blog about the experience?

Sure, I am raising awareness about the dangers of this class of drug.

But I want to speak with doctors and have them reconsider their prescription habits.

I want them to understand that just because they went to medical school, it doesn’t mean that they know everything.

I want doctors to understand that they should not put anyone on a medication that they would not be willing to take themselves.

That it’s not appropriate to prescribe someone a medication without informing the patient of the risks of taking such a medication.

I want to visit medical schools and speak to our future doctors.

I want to find a lawyer brave enough to help me initiate a class action suit where those of us who have been harmed have the opportunities to share our stories.

I want justice.

Doctors take a Hippocratic Oath promising to do no harm.

And yet.

Doctors do harm every single day.

Our drug companies are not educating doctors properly because pharmaceudical companies are in the business of selling drugs, it’s in their best interest to create individuals who become chemically dependent on the drugs they produce.

Our “more medicine is better” culture lies at the heart of healthcare, exacerbated by financial incentives within the system to prescribe more drugs and carry out more procedures.

I find myself wondering about my purpose.

Should I go back to school to be a good clinical psychologist, diagnosing and treating mental, emotional, and behavioral disorders?

Or an addictions counselor?

Or a counselor specializing in treating trauma?

Or an art therapist?

Or should I go rogue, and — work with out formal credentials — to help counsel individuals who are trying to wean off benzodiazepines safely?

A firm believer in the power of the people, I wonder if I am supposed to become an activist and attempt to singlehandedly spearhead a revolution? Call the media – radio, television, newspapers, magazines. Encourage people to bombard our politicians? Organize protests in front of doctors’ offices and hospitals?

Just the way people were harmed by an unscrupulous Tobacco Industry, the way the the people of Love Canal were harmed by the Hooker Chemical Company, the way the people of Flint Michigan were harmed by trusting their politicians to protect them, I believe those of us who have suffered iatrogenic harm have to fight to be seen and heard.

I put a lot of pressure on myself to do more, to work more, to help more people.

The reality is, I – myself – am still healing.

I still suffer from burning mouth syndrome, shortness of breath, and joint pains.

Pain that makes me wince.

I wish I didn’t have these symptoms, but there isn’t anything I can do about them.

All I can do is make a choice to get up each day and do the best I can do.

If I help one person, it’s enough.

It has to be.

For now.

Do you ever feel like this in your own life? That you’re not doing enough? How to find your answers?

tweet me @rasjacobson

 

 

 

 

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.}

tweet me @rasjacobson

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.