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:
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