My health care team is not really a team: it’s three parts linked through me, the one with the injured brain, the healing brain, the brain that has suddenly sent them into crisis mode while freaking me out. I have tried for years to get the disparate parts of my team to talk together. I’ve only succeeded once or twice with two parts like COTA and CCAC people meeting with me around my kitchen table (homecare is literally at-home care, and OMG, what a wonderful non-draining way to get care, that allows you to do more in a day than just attend an appointment, but I digress). Or when I got my neurodoc and Dr. Lynda Thompson of the ADD Centre to talk on the phone about me over a year ago.
Every now and then, I try to get my neurodoc to speak to the other members of the team, maybe CCAC or maybe the ADD Centre. The idea of all three entities holding a conference call would be utopia. Anyway, my efforts usually fail. The usual reason is no time, too busy, schedules don’t mesh or zero communication happens — missed calls — and then they forget to retry. So I struggle along.
Then one day I was informed of something, which I can’t write about yet because I’m still trying to negotiate a reversal. Suddenly: flurries of calls were made between my neurodoc and some members of my team.
Then I was scheduled for a full-cap assessment in a few weeks, and so I began the Herculean task of arranging a post-assessment call between my neurodoc and the ADD Centre to co-ordinate my reading program based on that assessment. O.M.G. I wanted to kill myself. Just to get a tentative date, I had to use email with the ADD Centre and a combination of voice mail and in-person methods with my neurodoc (and email copies that he kind of, sort of read because he doesn’t do emails you know) to be the go-between.
That became moot last week because my brain decided to get real plastic and do what-to-me is bizarre stuff after the ADD Centre changed the biofeedback protocol back to CZ. The bizarre stuff has happened last year but went away, or so I foolishly, wishfully thought. And I’ve done CZ training before and SMR training. Not my favourite place because of memories of the emotional tsunami that hit me back in 2005 (it was rectified immediately).
But this was different.
Suddenly, my neurodoc got on the horn and called the ADD Centre. The usual missed connections ensued. But there was no forgetting to retry this time. (CCAC should have been in on this action too. But, well, they have other issues on their mind.) Thank God! Because what is happening is WEIRD.
Why does it take a crisis to get health care professionals to speak with each other? Why can’t they do that as part of their regular practice to co-ordinate care, to keep in regular or at least annual touch to ensure they are staying on the same page, and to ensure no-one is missing out on major problems?
A client presents differently to different health care providers. Co-ordinated care with the GP at the centre and the patient kept fully engaged is essential when treating complex and/or multiple problems. As for trying to keep my GP in the loop . . . Well, I don’t know what to do about that systemic health care problem.
I have, in the past, kept my GP informed, but with all the emotional and PTSD difficulties, I haven’t since last year. It’s too bad that when you drop out of being an engaged patient, not even your GP will intervene, take the initiative, and call you, that is, boss you around so that you’ll get the things necessary for your health done. I miss my old CCAC person. She was good at bossing me while ensuring I didn’t get overwhelmed. Sigh.
Luckily, the Toronto Pan American 2015 Games began, and they have been a welcome distraction. I took my camera out for a spin at the free sailing races off of Sugar Beach and began checking out the cultural venues. I took photos.
My brain biofeedback sessions always end with SMIRB — stop my irritating ruminations book. This week, I didn’t want to write during SMIRB. Or rather, a personality within me didn’t want me to write. For a few interminable seconds there, I thought I wouldn’t be able to start at all. For someone like me, this is not normal. I may whine, I don’t know what to wriiittte. But once pen is in my hand or fingers on keyboard, off I go, my unconscious expressing itself rapidly and fluently through my fingers. Sometimes my conscious mind participates too in writing.
But today, pen remained motionless on the paper for long enough, I began to worry.
Then I began to write.
Uh, wait a minute, my pen is flowing across the page, but there’s this person inside me who doesn’t want me to write, whose force is spreading itself into my muscle cells in my arms, wrists, hands.
I keep writing.
But energy is fleeing me as the force to stop exerts an implacable will. I’m implacable too. I tell it no and forget how to spell. It’s like the early years after my brain injury when my stellar spelling skills morphed into misspellings, muscle jerks that turned “l”s into “f”s, and strange verbos. No verbos this time, only usual kind of misspelling where you combine two words into one, as in you write “feal” because you want to write “feel” but are thinking ahead to next word: “fear.” Force grows stronger; focus harder on what it is I’m writing.
Focus saved the day. I was able to ignore that stop-writing force as I put myself into what it was I was writing, thought about the puzzle and fear-inducing emotions of it all, and stuck with my unconscious mind driving my pen across the page. At some point, I realized I had more energy and the force was gone.
No phew this time. Just stick to writing until time was up. My heart rate dropped by about 5 beats per minute. Not great. My trainer knew I was not myself because I didn’t take the results printout as usual. She had to hand it to me. It’s the second time in three weeks I’ve forgotten it.
I wrote on the back cover of my book Concussion Is Brain Injury that I had died when I suffered a closed head injury, not literally physically died, but the person that I was died that day. Since then, my health care professionals and I have talked on and off about who I am. This week, I’m realizing that the concept of personality, the issue of who I am, is so complex that we have been approaching it all wrong.
For years, I was in a state of angst: “who am I?!!!” I screamed inside myself. I had no idea. At some point between 2010 and 2012, that angst went away; at some point, in the last two or three years, a new me has been creating itself and maturing. But that new me is very new, weak, fragile, unstable, vulnerable. In the last few months, old me and unknown me have been flickering into the emerging new me for a few minutes at a time. I’m not sure, but I think these flickers were not obvious to anyone but myself, and it was mostly happening when I was on my own. These personalities or parts or versions or whatever you want to call them – I haven’t figured out the right vocabulary yet – were transient. And though they were stronger personalities than the new, emerging me, they existed like short circuits in the brain, only on when the “right” neurons briefly sent electrical signals back and forth to each other in the right order at the right time. It would make sense that they were stronger because they were at least partly my pre-brain injury personality, a personality that was a mature adult well before my car crash.
But then I had the most bizarre experience on Sunday, 5 October 2014.
It's been a wacky week inside my head as personalities old & new get it on. Exhausting. I'd like to sit on a beach going ohhmmm #braininjury
On the Saturday, my neurodoc had heard something quite different in my speech, so perhaps when I was speaking to him I was already transitioning then. But to me, I went to bed Saturday night the new, emerging me and woke up Sunday morning a different person who had completely taken me over yet was me.
My neurodoc has experience in treating people with dissociative identity disorder (DID). This is the current term for what used to be known as multiple personality. Some people think it’s a bogus diagnosis, but if the brain creates or manifests personality and if after injury, people notice changes in personality, then why can a brain also not create many personalities in response to trauma in order to protect the core personality?
I do not have DID.
But his experience treating it gives him insight into what is happening with me that other (neuro)psychiatrists would not have and I highly doubt any neurologist would. And my ability to analyze myself plus my university education in psychology helps him help me. Thankfully so, for apparently we’re wading into uncharted waters here. There’s an awful lot of “I don’t knows,” and that means he has to really hear me and actively seek to understand and not assume he knows more than me. He realized this early last week. Because he was rocked by the personality that spoke to him on Saturday and then he thought he was talking to some other personality that was not me on Monday then realized too late he was talking to the me he knows, he finally – at last, at last – changed his approach completely and began asking me lots and lots of questions on Wednesday and even read copies of my emails to my ADD Centre team explaining what had happened to me last Sunday. All week, I’ve had two variations of me battling each other yet was always me; even my mother commented to my father that something was different. She admits she’s not that observant, so it must’ve been really obvious! Prompted by my neurodoc’s questions, especially his opening salvo of our last few conversations, “which Shireen am I talking to?”, I woke up today, Saturday morning, actively scanning myself to see who I was – new, emerging me, thank God. And after two weeks of terrible fatigue, I had more energy today. Yay!
The last few days, I’ve thought a lot about my neurodoc’s questions and his observations and his explanation of DID. This is what I have so far.
But first to explain Sunday: for about ten hours after I woke up, I was a person who was very self-controlled, who could at will suppress emotions or release them so as to feel but chose to mostly suppress, who was determined, who had fully formed ideas at odds with my own attitude, who cannot write my novels the way I can, who is not interested in emailing or tweeting or calling people, who is not open and vulnerable in the way my brain injury has made me, who could not focus because the thoughts kept demanding my attention, and who had a brain that thought at a high rate of speed. OMG, was it fast! It was an onslaught of thoughts, a train of thoughts with no gap between them whatsoever, like a continuous push that had no inertia, a frictionless, endless train of thoughts. (But these were not racing or hyperthoughts, for I could feel and emote grief and abandonment fully when my emotions surfaced on their own or at will.) Apparently, my neurodoc said my speech on Saturday was a continuous push at a high rate of speed he was not accustomed to hearing. To me, my speech on Saturday was my usual rate. This is a bit scary, as I have always been able to discern when my speech has sped up. And I’d like to think I notice when I’m thinking faster. Thankfully, I knew on Sunday that my brain was working at an abnormal-to-me rate, perhaps at my old pre-injury speed. And I think it stopped because my brain burnt out!
I was so relieved when it did. My neurodoc wants to talk to me when it happens again. (What do you mean “when?”! How about “if” as in never again.) Since I can’t reach him, we’d have to figure out when it would most likely happen, and he’d call me then.
The worst aspect for me of this experience was if this personality became me or I became her permanently, I would no longer be able to write. As I feel liberated inside myself to write this post now and looking back at the last week, I realize that I have been totally unable to prepare for NaNoWriMo, not just because of grappling with PTSD, but because aspects of this personality were already manifesting themselves. I just didn’t realize it until WHAM! she took over last Sunday.
Anyway, back to DID. In DID, there are different personalities who call themselves different names and appear as the ages they are with obviously different traits. The core personality is either unaware of the other personalities, what people in this field call “alters,” or observes them like we would observe another person with as much control over them as we have over our parents. Also, unusual kind of memory issues prevail since when an alter is in control, the core cannot lay down memories of what is happening and so often doesn’t recall that period of time. When someone is sexually assaulting you for the umpteenth time, it helps to have an alter present so that you, the core, don’t have to remember the assault.
How I differ from DID: First off, this personality war is the result of a brain healing after an injury, not a result of childhood trauma. Also, I was the person on Sunday although at the same time, that person is not me. There was no separation of core from alter like there is in DID. There was no differences in age or gender. There was no third-person observation going on. I recall it fairly well. I have been having some memory issues, but if I make an effort in a quiet place and have enough energy to do so, I’m pretty sure I can eventually remember what I’m trying to. I didn’t like what was happening at the same time I did, and I didn’t know how to stop it. I couldn’t have stopped it even if I did know how as it was too powerful. Yet when my neurodoc was talking to me last Saturday, he said my memory was much less accurate than what he’s used to hearing and I was not as meticulous and detailed in my explanations as usual. I had no idea. But when I looked back at the notes I wrote down at that time, I went, ooohhhh. Yet earlier this week, I was coming up with ideas and perceptions on the fly in a way I haven’t been able to since my injury. If this all sounds confusing, well, welcome to my world!
Since my brain has been regenerating cognitive abilities like concentration, writing, listening, reading, memory, speech, expression, and recently emotions, then it makes sense that it’s now doing with personality what it did with those cognitions. None of those came back the same as before or all at once. They flickered on and off as circuits were being rebuilt or newly wired until after months or years they became permanently healed or at least stabilized at improved functionality. My emotions are still a work in progress: on and off, intense and mild, not under my control except for last Sunday for those ten hours. I’m having to relearn what it’s like to feel normally. So I guess the same is now happening with personality. Oh goody.
Why is this happening now? Was it using my AVE to boost my mood six out of the previous seven days, using an alpha front end with L10Hz and R18Hz boost? Was it adding increasing amounts of Udo’s omega 3-6-9 with DHA oil to my morning oatmeal, something associated in the past with my speech speeding up? Is the brain biofeedback causing it? Was it because my unconscious mind felt threatened a few days earlier and my brain had finally reached the healing point where it could switch out my new fragile me for a strong personality that could protect me?
I think because the biofeedback has regenerated so many of my cognitions; is now regenerating normal affect; is allowing me to experience the emotions of such devastating events post-injury as my husband leaving me that I couldn’t feel at the time only intellectually experience and with an impaired intellect at that; has opened up traumatic memories that the injury damaged my protective mechanisms against — it’s allowed this kind of complex healing (healing? change? rewiring?) to occur, which I sure as heck didn’t anticipate. A personality needs affect; an affect-less person is hard to relate to. So perhaps personality cannot be rewired until there is affect to work with. But I wouldn’t want to be an affect-less lump just so I could avoid this process. I think too the PTSD, the difficulty of trauma therapy, and the inability of my neurodoc to keep up with my neuroplastic changes – he can’t see me as often as I need because of his schedule – medicare simply will not fund enough psychiatrists and neuropsychiatrists as there is need in Canada, so they’re oversubscribed – created a desire in me to shut down and protect myself. And so a strong personality who could protect me and who could shut down my emotions at will broke forth out of my brain and took over for a few hours. Conversely, with my neurodoc’s dramatic change in approach, with him taking over some of my energy-sucking health care burden this past week (OMG, I practically fell over in relief over that!), a burden that I dropped last January and no one else had picked up or helped me carry, I felt so supported that today I woke up as myself because it was safe to do so, and I woke up with more mental and emotional energy than I’ve had in months. I worked on a photo on my computer, something I haven’t done in ages; and I wrote this post too. (I don’t often write more than once a week these days.)
No effing medication can replace or be as good as the care and support of a human being who has extensive experience working with complex cases.
I think if I was on medication, this would not be happening because of the dulling-of-affect effects. I would also then not have a chance to become my new actualized person, to finish the process my brain injury started. I would forever be stuck, the “symptoms” of personality change suppressed until the medication no longer worked. Then I’d be right back in this confusing, chaotic place with still no one prepared to help guide me through personality maturation and the related brain injury healing. I’m feeling mighty fortunate right now that despite all my tussles with my neurodoc, he is sticking with me and rising to the challenge. I’m glad he’s familiar with brain injury but not an ABI expert, for then he’d be limited by his assurance in his own knowledge. And we know so very little about the brain. This process requires much more of him professionally and intellectually than anything else he has treated in his decades of practice. But it’s good for him. Heh.
One thing I realized by Friday is that when my social worker told me about a year after my brain injury to unpack the boxes of the new me, she was asking me to do something too soon and not appropriate. The approach was wrong, too simplistic for such a complex process. Imagine what the personality of a broken leg would be like in the world. You would not say that manifestation was a real person, was the actual self of the person with the broken leg. Well, I think, what I was experiencing for at least the first ten years post-injury and people were seeing was the manifestation of the injuries in my brain with bits and pieces of my essential self still present. It wasn’t me; it wasn’t a person’s personality. That’s why I kept changing every few years as my brain healed and why I didn’t know who I was. What is happening now is what my social worker was assuming had happened right after my injury: the creation of a new self.
—– Update note 12 Oct 2014: Added emotion, AVE, and Udo’s oil details.