Benzo Withdrawal Life Doesn't Fit in a File Folder

Why Was I Spared?

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…


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.

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Talk about arrogance!

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





15 thoughts on “Why Was I Spared?

  1. I feel myself grieving and am infinitely hard on myself despite knowing how much I’ve done. We put a lot of pressure on ourselves to be where we know we are capable of being while not knowing when that moment is coming, or here now.

    1. Why do you think we’re built that way, Stephanie? Is it some evolutionary part of us – this worrying about the future that kept us alert and alive? Maybe it’s that thing that connects us all to each other and The Divine? I have no idea. I just have to keep telling myself to calm down. I don’t have to have all the answers today.

  2. Reneé, these are great questions about which way you should take this. I have a good friend who is a psychiatric nurse practitioner. She has often had jobs where she was dealing with patients on way too many meds – it seems to be rampant in the field – and she took it on to wean them down. BUt most doctors don’t seem to be educated in the idea that less is better, and how to go from too much to less without causing harm. She got fed up and switched into counseling, but I have the sense that you are on the right path, just by asking these questions, about what’s the best way for you to help others. I don’t have any answers for you, just follow your heart. Don’t jump into anything, take time to really consider each possibility and try it on.

    1. Hi Ann. Interesting about your friend’s choice to leave nursing. We have a very inflated view of doctors in our culture. We revere them, as if they know more than the rest of us. And while modern medicine has made many wonderful advancements, messing around with drugs that alter the brain is one area where doctors know very little.

      And yet.

      We are taught to trust them.

      That’s a very dangerous paradigm.

      Thanks for your wonderful words.

  3. We’re are here for a purpose – sometimes we find ours by accident, or sometimes we find it because of our circumstances, and sometimes we drift through life without a real purpose. Gandhi wrote – ‘Be the change you wish to see in the world.’

    I don’t trust the drug companies- Big Pharm is not good. Peace.

    1. Hi PestoMom. With all due respect, we have a very inflated view of doctors in our culture. We revere them, as if they know more than the rest of us. And while modern medicine has made many wonderful advancements, messing around with drugs that alter the brain is one area where doctors know very little.

      And yet.

      We are taught to trust them.

      That’s a very dangerous paradigm.

      As far as the sign goes, it implies that patients have no business researching for themselves. Behind this sign is a doctor who likes to be in control of other people, who is annoyed when people come in with questions, who is “slowed down” by a patient who wants to make informed decisions.

      The Internet provides us with a lot of good information, even our children understand this. If I ever saw a sign like this in a doctor’s office, I would leave immediately. The kind of deference this doctor wants is a mindset that I don’t want in a physician. My doctor needs to answer my questions and be open to the idea that new information could be out there since he/she attended medical school.

      I know better than anyone that doctors are supposed to continue to educate themselves; however, I also know many doctors who use their CME as opportunities for travel to far away locations and personal gain rather than actually learning anything that might truly benefit patients.

      I was married to a doctor for 20 years. I saw it all and heard it all. There are some wonderful practitioners out there, but we should never stop taking responsibility for our own well-being.

      I know I’ll never blindly trust a doctor ever again.

  4. I have a chronic health condition that, frankly, I don’t like to talk about. It’s not exactly rare, but it’s also not exactly easy to treat. The specialist you’re supposed to go to for such things was no help, so I tried a non-traditional approach and went to a pain clinic for something that isn’t primarily pain. And they tried all kinds of wacky stuff, some of which worked, and some of which didn’t, and some of which had unknown long-term effects. But to the credit of the doctors there, they said up front that they didn’t know, and asked me to partner with them in figuring out how I could get to best health. And as best I could, that’s what I did. *Including* online research, which I discussed with them and some of which we used.

    So thank goodness, those doctors are out there. But still, some of the meds I was on for a while … well, we’re all crossing our fingers that down the line we don’t regret it.

    It looks from here like you’re on a path toward the right thing for you to do to help others in your situation and prevent others from suffering. It sounds like you’re open to figuring out as you go what shape your work will take — and since there are no blazed trails here, that’s all you can do.

    1. Hi Jim.

      Thank you so much for sharing such a personal story. You’re lucky that you have had honest doctors who were willing to admit they weren’t sure if their proposed treatments would be beneficial to you. I don’t have a lot of faith in psychiatric drugs; they mess with brain chemistry – which we really don’t know very much about – but obviously there are a lot of tried and true medications out there that help a lot of people. hope you’re in good health today.

  5. Sigh. In December I reluctantly tried a supposedly “benign” drug to treat my RA. I ended up with drug induced hepatitis…and am still recuperating. I have never been sicker. My health care providers know that I am researching and carefully weighing options and risks/benefits and they ask me what I think and what I want to do. I would walk out of any provider’s office where that sign was posted.

    Even with a Master’s degree in Nursing, all my research and careful consideration, a simple drug nearly killed me. The adverse reaction was considered extremely rare and yet it happened. To me. Prescribing medications with known adverse effects that can be life and health altering…should be criminal. Let patients in on that decision. Help them research and weigh the risks vs benefits. But first…try everything else you can first.

    Whatever direction you go…you will shine.

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

    Giving and having “license” is a sometime tricky (unscrupulous?) business, and money is most assuredly behind a lot of it. In this case, pharmaceutical monies. :/

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

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

    All of these are good ideas Renee. It’s a process and real change usually doesn’t happen overnight. It must be the trickling-effect of falling dominos — they don’t all fall down simultaneously; one must tip the next one over and so on. It seems to be human nature, as a whole at least, that we must be the proverbial frog in the frying pan: We don’t pay serious attention to sources of causes until it’s too late. 🙁

    But if you are the first domino to start the change, or somewhere down the line, THAT IS GOOD either way! Just keep ‘knocking over’ those next to you like you are doing!

    Be patient and firmly stubbornly persistent! It will happen. 😀

  7. I used to get so frustrated with doctors when I was a practicing psychotherapist. They would prescribe psychoactive drugs that they only thought they understood. But I had to tread very carefully, because if I was too blunt with my clients about this issue, I could be accused of practicing medicine without a license.

    All I could do was keep pushing my clients to see a competent psychiatrist (or at least discuss any meds they took with their pharmacist).

    As for you desire to do more, that is commendable, Renee. But you need to be gentle with yourself an only do what seems manageable. You being in stress overload won’t help.

    When I retired from my therapy practice, a client gave me a necklace with a gold starfish charm on it. We’re not supposed to take gifts from clients, so I tried to politely turn it down. But she insisted and recounted the story of the little boy throwing stranded starfish back into the ocean after a big storm. A man came along the beach and pointed out tot the boy that his efforts were futile. “You can’t really make a difference to all these starfish.”

    The little boy picked up another one and threw it in the ocean. “No, but I just made a difference for that one.”

    My client said that she was one of my starfish and that I had profoundly changed her life. I took the necklace, and I wear it especially on occasions when I need to remember that I’ve made a difference to some, even though I couldn’t change the world.

  8. You are working toward who and what, that is the journey. Why did you survive? Because you have something to do, something to share, something to give and you have the strength to do it. Don’t ever question or doubt. I know it is hard, terrible and frightening, believe me I know. But don’t doubt for an instant you can do this.

  9. I think your wonderful talents and enthusiasm would be best put toward…HA! Like I have that kind of insight. Why not drop in to talk to a guidance counselor or two at a local university and see what they say. I know a young woman who was all set to become a wizard in food science but after a few discussions with a guidance counselor, she totally changed her direction and ended up with a career as a rocket scientist at SpaceX, which she loves.

    Just like you might want to hear a second or third opinion after seeing a doctor, wouldn’t you want to hear a second or third opinion about what you could be doing for the rest of your life?

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