This is a note originally posted on Facebook. I’ve been making more of an effort to blog here, recognizing that not all of my fans follow my Facebook wall. And I’m especially posting about PTSD here because there are people already contacting me through the website because of the video about my experience with it — and my successful treatment of it — posted here under the About Ken menu. This was written while I was in the midst of my last PTSD “surge,” which started up just before my best friend, Jay Lake, went into hospice for colon cancer. Writing it was not just intended to help others but to re-focus me while in the midst of the symptoms. I was treated in Chicago in mid June and have seen the symptoms once more into remission.
Much like Jay has been public about his cancer, I chose several years ago to be more public about my Complex Post Traumatic Stress Disorder. It’s not comfortable sometimes but it is important because there are a lot of people who have this and have no idea that they do…or have not yet found the tools and treatments that help. I have a section on the About Ken portion of my website with a video that talks about it. I thought it might be good, given that I’m currently working through a triggered state, to share a bit.
My trips to Chicago for the “Chicago Block” have eradicated the symptoms completely for long stretches with occasional “bumps” that I’ve been able to manage. A low dosage of Clonidine (a BP med) helps me maintain when I’m starting to feel it stirring to life. I liken it to a jungle of chattering head monkeys who at first shriek and scream, then settle down to a whisper. I do not trigger often — usually it is around loss, especially death — or fear of similar harm endured in my Unfortunate Childhood. But the monkeys are clever and when they know there is nothing to be done for the actual triggering event they go looking for any other possible threat and work to convince me, first with the shrieking and later with the whispering, to fight or flee. Before the blocks and all the therapy I’ve had, I didn’t know any better to listen to them. Nowadays, I know better but they are amazing little monkey attorneys capable of using false logic to persuade me. The hard part is how tired I get arguing with them because they can whisper, shriek, cajole for days…even weeks…until they settle down. And sometimes, the only answer is to catch a plane to Chicago for my next block. Folks who have this and don’t know it or don’t have the tools listen to the monkeys and in the end, find themselves ultimately fighting or fleeing from everyone and sometimes even life itself, physically by suicide or through substance abuse. The fleeing means withdrawal and the fighting (I’m not much of a fighter; I’m a flee-er) in some folks can even mean acting out against others.
To change metaphors, we like to think of our brains being a unified bit of meat that drives the bus of our body. That is not so. The brain is made up of complex layers that have evolved over a long stretch of time. It is really more like a bus driven by committee. The cortex is the one who usually feels in charge. It is where our intentions, complex functions, language, etc, all operate. It drives a lot of the time and believes it’s in charge most of the time. The limbic system, where the amygdala resides and operates our sympathetic nervous system, sits near by and at the first sign of danger, it takes the wheel. It doesn’t ask for permission and the cortex isn’t even aware that it’s no longer driving even though it still feels responsible for steering the bus. More complicated, too, is that the limbic system’s only language is emotion. In the case of someone with PTSD, or like me, Complex PTSD, that emotion can be very, very loud at times because it’s not just dealing with the stress of the moment, it is dealing with an ocean of fear and emotion from trauma that happened to you at an earlier time. Sometimes, like with me, that trauma started pre-memory. Which means the PTSD has aspects that are wired into your personality. I can’t tell you if they can be unwired, but I can tell you that three years out from my first block, when the limbic system takes over in a Big Way, a more cognitive part of my cortex is aware of it and goes to work settling it down.
For those of you wrestling with this — and many of you may not even know that this is what you wrestle with because PTSD can “dress-up” like just about every mental disorder in the book — here are some things I’ve found that help.
- Don’t let your cortex convince you that it’s still driving when it obviously isn’t. Learn your “tells” for the things that trigger you. But don’t avoid them. Avoidance is a symptom of PTSD. Instead, face it head on and give yourself — or find yourself — the help you need. Become familiar with PTSD and how your version works.
- Therapy and medication are your friends. I’m finding that a low dosage of Clonidine is all I need (it is the tab form of the liquid used in the Doc’s blocks) and I’m at the point where I only take it during times when my “tells” are showing in a big way.
- Consider getting the block yourself. It is not widely used for this yet but it is taking out all of the symptoms, for a varying length of time, for about 80% of the people who use it. It is fast, affordable and vastly more effective than the other meds if you take into account the side effects, the cost of ongoing medication, etc.
- Learn how to not have strong feelings about the strong feelings. Shaming yourself or despairing or raging against yourself because of the fear or anxiety or depression just gives you a bigger plate. You have PTSD. It is not a disorder — it is a complex cortical injury that has given you a twitchy, highly reactive amygdala. One good trick here is to treat those out-of-control feelings like a frightened two year old. Would you beat your two-year old up over being scared or angry? That part of you needs grace.
- Surround yourself with a tribe who understands your PTSD and loves you…and LISTEN to them. People who love us are like mirrors that help us see the parts of the highway we can’t. Trust your mirrors. Educate them. Peter Walker has some great articles easily googled on CPTSD and emotional flashbacks. Judith Hermans’ book TRAUMA AND RECOVERY is also still really good.
- Try EMDR. It takes time but it can be very effective. I’ve heard bio-feedback helps too. I don’t have experience with it.
- When in the midst of panic or anxiety — or even as a maintenance activity — try activities that require “cross-hemisphere” brain activity. It is harder for the panic signal to keep going off when the pattern is interrupted. I had no idea most of my life why playing guitar and singing was so soothing to me, even in front of a large audience. But it is because the complexity of remembering chords, finding rhythm, picking strings, calling up lyrics, singing those lyrics and playing harmonica interrupts the panic signal and gives the sympathetic nervous system a little break so the parasympathetic system can kick in. I’m told knitting, puzzles, crosswords, coloring, and a lot of other activities can do this, too.
- I have found safe touch with someone trusted can be very helpful. Cuddling, being held, hiring a massage therapist — I’m not sciency enough to be authoritative but I know it releases chemicals that help with the anxiety.
- Eating protein and staying hydrated has also really helped. Exercise also helps.
- Sleep. You need to sleep and let your body do the magic it does during that time. If you want a nap, take a nap. If you aren’t sleeping well, get on something that will let you sleep. Being sleep deprived — sometimes from the screaming of the monkeys — just delays settling down.
- And again, you are responsible for your well-being. Your feelings — including the fear, anxiety and anger that can come out of PTSD are your responsibility. Be aware of the danger of projecting them onto others and educate yourself about your tells, your triggers, your past traumas. And let the people who love you know where you are and let them gently bring you through those intense times.
I could write a lot more here, but this is a good chunk of what I’ve learned so far along the way. I hope my transparency in my own journey can help you with yours. And as always, I’m happy to take messages and point you toward support along the way.
Trailer Boy out.