almost a year since almost dying. what is up?

Updated: **I took this down after it had been up for some hours because the response I got from people was freaking me out. The fact is I have very severe PTS — AND everything else is true too. I get uncomfortable when people get all happy about how I’m doing. The PTS is crazy bad. The drugs fry our nervous systems in a very big way and that remains a reality for me. It’s BRAIN INJURY and last year I almost died as a result of that brain injury. Every day is difficult AND I can also be grateful  — but there is nothing easy about my life and the fact is that I, just like everyone else with these injuries, do not get acknowledged nor do most of us have what we need.  I don’t have what I need…I can imagine all sorts of supports that would be helpful if I could afford them…I am no different than those I advocate for. My needs are not met. So while I am doing better and can hold some joy about the nature of life, I still feel largely locked out of actually being able to embody that.

I’m approaching the one year anniversary date of the second brain injury that almost killed me. I entered the ICU on December 25th of last year. I was unconscious for several days and then when I woke up I had lost virtually all my memory. Conveniently and fortunately I remembered Paul, my partner,  but so confused, I also thought he was one of the MDs in the hospital. So, yeah, it’s been a long haul to where I am now.

For the first 8 months I pretty much wanted to die every day. After a ten year recovery time after the first brain injury and repeated egregious traumas that led to that brain injury I didn’t think I could come back from that hell once again.

However, I did it in that 8 months and now find myself in better shape than I was in all the 10 years after the first go round. I was equipped to do it smarter and faster this time having spent a decade recording it and sharing it with others with similar brain injuries. I used my own work to get better faster this time.

This doesn’t mean my life is easy. It’s not. It remains very difficult and yet, I continue to learn and find this wondrous and nightmarish life both beautiful and fascinating. I am grateful.

***I’ve submitted a very informal book proposal to a publisher who has approached me twice. Yup. My creative process is a mystery so when, how or even if really remains up in the air. I know it’s not going to be the same old thing. I’m going to write for a larger audience that includes people who need to know things the readers of this site already know. I will be responding to the informed trauma communities and those with interest in trauma and mindfulness too. I remain open to the process of creativity and plan to be therefore surprised by what emerges because that is the joy of being a creative. I have no idea, again, what, how or even if and so I now surrender to life which more than anything is a big question mark anyway. 

**update: **so again, I have no idea if a book will actually come to be. I am in the moment and can only do what this injured body can do at any given time. A fair amount of the time I still have to spend in bed…sometimes as often as a day or two a week. Okay, now this feels more reflective of reality.  …having said that, I’ll put the post back up.

In any case I continue to attempt to learn to live in the world again. It’s not an easy thing to do after a decade of being largely homebound. (bedridden and largely non-verbal for about 3 years too) … it’s like culture shock that never goes away.  That is not unusual for the traumatized. We are not alone. And so,  I’m committed to rejoining the world and continuing my work in a new way. I’m not online as much and have very little social media presence and I am using this freed-up energy to learn to be in the meat world. Flesh and bone people I can touch. I need that.

Spending a decade with 1000s of people online who’ve been egregiously injured kept the PTS alive. Vicarious, secondary trauma is real and if we also have the same trauma it ends up being kind of exponential I think. You all take care of yourselves too. It’s really good to get away from the thick of it all.

I am going to move beyond it now and I’m doing it for all of us. I will continue to write and communicate what I know about the way the most sensitive and lovely human beings are being treated.  Psychiatry is (far too often)  heinously abusive and retraumatizing and it must stop. I won’t stop until it does. I simply need to do it differently. 

I love every one of us who’ve been hurt in this way. I love you. I will continue to do what the life-force within me asks of me because it knows far better than I do. The best thing about all of this is that I now trust myself…this process if nothing else has been one that has woken me up. This is a journey of self-knowledge and growth. A hero’s journey, really, and every single one of us is on one. Trust your inner guru. No one else knows but you. We need each other and we need lots of help as interdependent sentient beings but we also are the only ones who can feel the truth of what is right or wrong for us within us.

More info from the year:

“How did this happen? You’re the most resourced person I know. “

Adventures in attempting re-entry

Retaining agency is not resistance to treatment…it is in fact a sign of health

Meditation on death, impermanence and post traumatic stress

Mourning, loss and vision

Trauma, injury, illness and waking up

Psychiatric abuse is like domestic violence…


***

For a multitude of ideas about how to create a life filled with safer alternatives to psychiatric drugs visit the drop-down menus at the top of this page or scroll down the homepage for more recent postings. 

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About Monica Cassani

Author/Editor Beyond Meds: Everything Matters

20 Responses

  1. Monica..Thank you for sharing your struggle with us! It resonates with my experience and the horror of decades of medications, ECT treatments, and therapy….WE know our body better than one and need to listen to the wisdom of our hearts…. sending much love and hugs and gentle kindness to you!!!

    Liked by 2 people

  2. Wonderful, Monica . . . despite the hell of PTS(D) you’re going through. Ditto. Ditto. All of it. love, mickey. “Forgiveness is giving up on trying to make a better past” . . . gotta do it. Alone. “Trust your inner guru. No one else knows but you. We need each other and we need lots of help as interdependent sentient beings but we also are the only ones who can feel the truth of what is right or wrong for us within us.” That last phrase is the Truth that western doctors laugh at.

    Liked by 3 people

  3. zella88

    Lovely sky. Cool and crisp. rays of the sunshine. droplets of rain. Laughter and tears. Empty wheelbarrow framed by grape arbor. Resting. Healing brain injury from pharmaceuticals and psychiatry here as well Monica.

    Liked by 3 people

  4. Robin

    Hi Monica, I have been following your blog very closely lately because my experience is very similar to yours. The only difference is that I am following an Orthomolecular protocol of high dose vitamins Niacinimide and C. They have been very healing for me and prevent any psychosis, mania or delirium from developing and they nourish my body and brain. I also take small amounts of herbal tinctures of milky oat seed for nerve pain and Hawthorne for my damaged erratic heart and painful thyroid. Rubbing rose eo diluted in oil on my chest also helps relieve pain and quiets the chaos allowing me to sleep. To soothe my damaged digestive system I rub 1 drop fennel eo in oil on my abdomen. I am also unable to tolerate any strong flavors in food so am eating mostly only brown rice boiled in lots of water to make it soft, nourishing and warming. Since I feel cold most of the time, warm drinks and food only. I have been on a myriad of psych drugs for 36 years. My body could not tolerate them any longer as they were killing me body, mind and spirit. I have removed the chemical restraints as of October and it amazing to see my slow difficult but hopeful recovery back to life. There is no one helping me through this though and I am on my own to cook clean and go out a little for food. Fortunatley my health food store delivers for a moderate fee.

    Liked by 2 people

  5. Larry Baxter

    I trust what i shared responsorially, did not contribute to your confusion or distress,
    and deleting your initial outreach. If it did it would be useful to let me know. Supportively I remain.

    Like

  6. marysnewton

    ” — but there is nothing easy about my life and the fact is that I, just like everyone else with these injuries, do not get acknowledged nor do most of us have what we need. I don’t have what I need…I can imagine all sorts of supports that would be helpful if I could afford them…”

    Monica – I’m tickled pink to see you’re seriously considering a book! But meanwhile, what are the supports that would be helpful if you could afford them? I’d like to compare with my own experience. Love, Mary

    Liked by 1 person

  7. Great post. I love the sentiment- of just letting creativity flow and not predicting anything. It’s this indeterminacy that allows creativity to bloom, if we trust it. Indeterminacy is also the antithesis of the psychiatric paradigm. I would imagine your writings and thoughts in book format would be read widely, not just in the ‘prescribed harm’ community, but much further afield. Please keep writing 🙂

    Liked by 2 people

  8. Hi Monica. I was so sorry to hear what happened to you last year. I’m glad to see you made it through this far and hope you start to feel better soon. I wonder, though, what was the drug that did this to you?

    Liked by 1 person

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