Piecing together a life
I'm piecing together a life.
I look like I have one. I mean a normal one. But I don't. Not yet at least.
Today I did a bit of work and mustered up the courage to open some mail.
It's always discouraging to open mail, to confront bills when your finances are so scarce you don't know if you can pay them.
Things like life insurance, health insurance, work fees, taxes ... the boring stuff of life. Things I've never been good at. Now my relationship to these mundane things are exponentially worse.
Lack of sleep takes its toll too.
My sleep schedule is insanely off kilter and part of that is my fault and part of that is the torture this beast brings with it.
At night I begin to feel my best...and when I say "best" it's hardly good. I seem to get wired but tired and take walks late at night to try to help with sleep.
I'm walking through withdrawal but at close to midnight. I look like a crazy person, and by all accounts maybe I am one at this juncture.
I dab my essential oils on my wrists and feet, and dip my feet into a steaming hot pot full of magnesium chloride, I turn on the diffuser, listen to music, try to talk with benzo friends (all of whom have the same fucked schedule that I do) and then put my heavy head on my pillow.
Then I wait.
That's the time of night I think I'm not going to make it. I sort of say some kind of made up prayer and then surrender my will to the universe. So far it's worked.
That's the time of night I feel the burning, my skin prickles like I'm being bitten by a swarm of bugs, my head is making all sorts of mechanical noises some which sound like whistles, others like drilling.
I woke today with terror and an ache in my throat. Yesterday my bladder felt so sore it was hard to walk. My GI is wrecked and that's a constant. This is the only place I recite my symptoms in detail, and I try not to do that at all. But sometimes I just need to say it.
I DON'T FEEL WELL AND I AM SICK OF IT
What does a healthy body feel like?
What is it like to drift off into sleep with a relaxed body and mind. Not a jackhammer drilling through your brain and inhabiting a body that feels more like a forest fire than anything else. What is it like to be believed. To not have to go into hiding because of these symptoms and because most of the world doesn't understand and doesn't care to learn.
What is it like to not have the last thought you have at night be " I don't think I am going to make it?" And even worse, to sometimes feel you don't really want to.
Then there are other days when by sheer will of force, by magic, the stars seem to align and there is a moment and I do mean a MOMENT of calm, peace, contentment and most of all hope.
Those are the moments that keep me going.
And most of all the connection of others--online, in person, on the phone....despite the drama and sometimes intensity that many of us have online it can be a lifeline when no one else in the world gives a damn.
Words of wisdom
I was recently sifting through the benzo boards and came upon a quote that certainly describes benzo or psych med withdrawal syndrome to those that suffer from it intensely.
You are not drowning.
You are being baptized with knowledge you didn't ask for about an evil so deep it feels as though you'll never breathe again.
But you will.
Hello Darkness my old friend
I was just reading the article about the artist Dave Dave who had been burned by his father and just passed away. This article was so beautiful because although he had a life that had been painful and traumatic he never ceased to be empathetic, peaceful and trusting of others.
I know that this path can make us bitter. Mistrustful. Lonely as hell.
Reading about this boy, now a man, who "had a galaxy of friends" and made everyone feel at ease and at peace tells me there are mystical magical moments that can be extracted from deep suffering.
Look, I'm not for deep suffering but the truth of it is most of us ARE deeply suffering. The ones who are not are usually not on facebook or online sources for comfort. So what can we do with that suffering. How can we make our lives worth living despite this hopefully temporary pain?
How can we make someone else's life more manageable or healthy and happy in the meantime?
When benzo rage, terror, akathisia on and on takes hold it feels as thought we have nothing to give. I know in those moments, I truly have nothing to give. When it recedes there is more room for giving not just receiving.
I'm going to try to post some music, videos and distractions soon..... Tell me how you're spending your days....
I have to write about lives lost. Not to scare anyone. Not to haunt anyone with these stories. Only to tell the truth of the gruesomeness of this suffering. To make it real.
A friend of mine, a writer, has told me it is important for me to write. To write not just for those suffering, after all WE KNOW this is real. WE KNOW this is not imagined. To write for the mother, father, brother, husband, wife, lover, friends and doctors and other medical professionals that do not know, care or believe that this is real. To understand that this is invisible. That we become warriors and survivors that either hide away in our bedrooms or travel the world with a stiff upper lip, swallowing our pain and symptoms.
I'm not just talking about benzodiazepines, although that is largely what I have been writing about. I'm talking about all psychotropics that are prescribed then mismanaged by medical professionals. I'm talking about being gaslit and left for dead.
One woman who died recently and whom I knew personally was a medical professional herself. She was essentially a doctor. She knew medicine. She knew the brain. She felt she was dying, or at the very least I am guessing she knew she did not want to survive this.
One year ago she wrote me and told me her story. Long time lexapro user, taken off in two weeks, then the doctors tried to patch her back up with an assortment of meds, TMS therapy, ECT and more. She landed on a benzo but her entire brain and body had been affected. She often told me she just wanted to be herself again. " I just want to be ME again" she said. We all speak those words, why do we all sound so eerily the same? She had gone to the doctor after a bad breakup and each subsequent doctor's visit landed her in deeper and deeper trouble, jangling her brain and body.
I'm not writing to tell a horror story but to tell a truth. So that her story isn't forgotten. She was not crazy, nor was she suicidal.
She wanted marriage, children, LIFE, work, travel. She wanted what most of us want, and most of us get. I still do believe she could have healed. I believe that we all can. The brain does heal but this injury creates such darkness it is almost impossible to see the light unless someone points it out for us and believes in us, walking and cradling us towards that light.
And it is a long fucking road.
There will be battle wounds but I still believe that recovery is on the other side.
We have to hold onto hope and stories of those recovered. That is why their stories are so powerful and so important. Believe me, when I feel my body and discomfort each day it is hard to hold on to this hope. It is hard to imagine or believe myself so I just have to do my day, each day and squeeze out as much life as I can.
When there are deaths in the community I go dark for several days, even weeks depending on if I knew the person or not. I feel their presence, their essence even if we have never met in person. I hold a thought and prayer for their life and their loss. More than ever, I feel in these moments that we all are one.
Someone who found themselves accidentally dependent and suffered an iatrogenic injury from medications that were prescribed. Sharing experience, strength and hope with others. This is written as a person on this winding path and NOT as a professional. Please contact a licensed professional for any medical/psychological care or advice. This is NOT a substitute for medical or psychological care. What is written here reflects my own personal experience ONLY.