Friday, October 30, 2015

Mind Change Day 30: The End for Now

In the time I've been waiting, and then actively trying to complete my recovery from a series of concussions, I've been super-sensitive to the opinions of others, and everything they say irks:
  • I sound like something's wrong
  • I act completely normal
  • I'm different than I used to be
  • I'm the same as ever, just muted
Nothing fits as an overall assessment because in one set of circumstances I'm really suffering, and in the next I'm comical and can't  help but laugh at myself. In a third I might feel like my old, super-smart self. In another I feel like I've become a more grounded and level-headed person. 

In truth, I'm the only one who's with me all the time, and although my abilities and reactions don't vary within the same situation (i.e. dueling conversations vs. a game on in a bar is always going to silence me and focus my attention on drinking my pint and then getting the hell outside), they vary a ton throughout the day because the situations are different. And it's weird to be on high alert every time I come into contact with someone, waiting to be judged. It skews your energy with people toward the self-conscious and suspicious.

I want out. 


There's only one way, of course--to stop caring about others' opinions. Yes I still need to care about those closest to me, but others? I have to let their opinion of me go. It's a snap judgement based on one moment in time and can't be an accurate description of how I'm doing overall, because that's complicated. So I need to stop treating them like a final grade in a year-long course. 

This week I walked into a school PPT and gave everyone a careful look for familiarity. I knew two of them and introduced myself (with handshakes, I'm so friendly) to the other five. All of whom introduced themselves by name, explaining how they knew me from multiple meetings in the past. They gave a smile. I apologized, flushed with embarrassment, and sat. 

What happened next is the issue. We launched into the meeting and reports were read. Sure, the reports weren't gripping or surprising but if they were I wouldn't have known because I was dealing with all my feelings about making the introduction mistakes. Did they think I was nuts? Did they know I'm out of work for these kinds of problems? 

Mind you--this PPT was not about me, it was held for my foster son and involved issues I really cared about. I needed to get in the game with the important stuff. This turned out to be quite difficult because of a conference call, poor reception, hearing and speaking were frazzled for everyone and I kept forgetting the points I wanted to make. And when I was frazzled and frustrated, the other feelings from the introductions (shame for not recognizing people I knew, worry over what they thought of me) intruded as well, making an emotional sandwich of with layers of negativity. 

Did I write down my negative thoughts or concerns, check them for whether they were distortions, and rip them up? 

No. I did not. 

Did I focus my breathing, let a tree outside catch my eye, center myself and let those anxieties drift past me like fallen leaves on a stream? 

You know I didn't. 

I wanted to pull out some gum and chew it because I was suddenly nervous and very emotional in a situation I have been in dozens of times in my lifetime, either at work or with my kids. But wasn't gum forbidden in school? I had a side conversation with my foster son over the gum in my purse.

Why was I flipping out? I was capable here. In theory. 

In reality I was a mess, but that had started before the meeting. My oldest son at home (he's 22) didn't have day program and had talked incessantly for hours that morning. His staff had said she would be late, not arriving until after I was in the PPT (what was I supposed to do, take him with me?  Have him sit in the hall?), then a few calls and emails came at me about other family-related issues I needed to deal with, I had homework due for a writing class. My son's staff arrived just as I was leaving so I didn't have to take him but filling her in on the morning made me late. I was low on gas, out of cash, forgot my debit card and realized on the drive that I hadn't taken my meds. There was an accident in the front of the school and some little orange ad-covered car took the last visitor spot while I was patiently waiting to be waved past the accident so I had to park in a far-off lot, making me even more late. Then the security guard reminded me of the new policy where I had to present a driver's license for scanning and printing of my visitor's pass (I did have my license, but it was in the far-off car so I had to troop back there), and a friend of mine who was a secretary tried to talk to me while I rushed by, in the midst of about five hundred other people talking. I couldn't answer the question she asked (or hear it, even) and was flustered.

Then I walked into the meeting. 

Here's why I need to be more gentle with myself. On another day, in other circumstances I can easily imagine, I could have breezed into a spot, through security, had a nice little chat with my friend and then entered the room smiling. In that circumstance would I have recognized the people I knew? 

I'm not sure, but if not I would have done the "smart" thing and held back from saying anything. Since I know I forget faces I would have waited until they introduced themselves. It was the rushing, "flustered" part of me that made that blunder.

She's not me, or not all of me. All of me includes the woman who can--when given enough time--fire off a pretty cohesive and convincing email, who can have the best insights into our kids' behavior, who can organize a vacation or stormproof the house. All of me includes my sweetness, my devotion, my playfulness, my creativity and especially my organizational strategies that get most important things in my life done well. I'm capable in all kinds of situations, just not all. 

I really stumbled in the meeting, making my points in a slow, disjointed kind of way that had the teacher running the meeting (who I've known for years and really like) summarizing what I said and checking to make sure he had it right. And that was really hard. My frustration with myself grew. 

But afterward the only damage was to my ego. I was fine. Hunter was fine. The people in the meeting probably forgot all about me the minute they left that room, and all the points I'd meant to raise were made and managed to everyone's satisfaction.

No harm, no foul. 

Honestly, no one cares about most of this "what's up with her?" stuff but me. And if I choose to ruminate about it, I'll increase my suffering. If I let it go, I'm free. 

That's a liberating goal, but I'm not there yet, and that's part of why I'm still in Stage 3 of the DOCC Program, and specifically stuck on Judgment. Until this month I was on leave from a job that was important to me, even though it was apparent from early on that I could no longer do my job. There's no overt shame in this--most people couldn't do my job--but I could for a long time, and that was "mine," a validation of my expertise, skill and worth.

Ah, there it is. That last word. What am I worth now that said job is no longer mine?

The Back in Control take on neuroplasticity is that the neural pathways that we've reinforced for years (in my case, decades) can be reprogrammed, but this work takes time.  Eighteen months minimum for chronic pain, and my neurologist says "there's no known timeline" for how long it might take with PCS (Post-concussive Syndrome), or even if it will be an effective treatment.

So what keeps me truckin'?

There's no downside to using the structure of this program to improve my symptoms and quality of life. It covers almost all the bases--self-care, judgments, stress management, mindfulness and awareness, self-talk, dealing with anger, anxiety and setbacks, going from a reactive to a creative mindset, acceptance of what will not change, building the life that I want, giving up victimhood, understanding how what I think lays down neural pathways, learning that I still choose whether to do what my brain wants, getting organized, accepting spiritual guidance, working on family issues, letting go of the parts of the past I still crave.

Like my job. Former job. Ex.

Hmm. Have you ever had passionate longing for a job? How silly is that? When I had this job it often drove me crazy. It took 90+ percent of my work week energy, and a chunk of the weekends I was on call. I loved working with a lot of the people there but I still see them sometimes (like earlier tonight, which was great). Yes I helped a lot of kids and families there but they're still being helped by other people. And is it my manic work ethic that has kept me from taking even one day in the many months I've been home to go to the beach and read for pleasure   So I'm dealing with about four kinds of cognitive distortions here, all blended into a craptastic stew I can eat or wrinkle my nose at and chuck.

Creating the stew means I'm still at Stage Three. But the fact that I'm wholeheartedly wrinkling and chucking means I'm making progress.

That and thirty freaking posts this month. Wow, that still seems like a me-made miracle. So what will I take on next? I'll let you know in another (possibly shorter ;)) series next year. For now I'll enjoy this blog burst being done

Love, Lisa



Wednesday, October 28, 2015

Mind Change Day 28: Taking Meds

Like many back injuries and other sources of chronic pain, Post-concussive Syndrome (PCS) has little or no structural component. Yes, there are areas of the brain that light up differently on a PET scan, especially in the white matter (corpus callosum) where diffuse axonal injury similar to Shaken Baby Syndrome can range from mild and self-healing to moderate or severe with varying levels of permanence depending on age and other factors (see an explanation here).

But most concussions do not involve a permanent structural injury that can be detected by anything but the most precise PET scans; most neurological exams are fairly normal. The non-structural brain changes have been found or theorized to involve cerebral blood flow, metabolism and neural activation (see here) but working backward from the effects of stimulants, also likely involves neurotransmitters. Like my son's pediatrician said when prescribing ADHD meds to him for the first time in order to keep him from hopping into the street impulsively, "if they work, we have our diagnosis." So if increasing the amount of dopamine (and serotonin and norepinephrine) significantly lowers PCS symptoms, then there must be a neurochemical imbalance causing at least some PCS symptoms, right?

Well, no. Not necessarily. While there's a "rule of thumb" that stimulants make hyper kids calm and calm kids hyper (and there is some truth to this in terms of hyperactivity), focused attention is different, and most people will have a positive response to attention with stimulants like Adderall; that's why they're sold illegally at colleges. They not only keep you up but help you lock things into your long-term memory more easily than without.

So the brain boost they give may not be related to a dopamine deficit, and in fact that's not measured (or easily measurable) prior to being considered for a stimulant trial. It may just be a general brain-boost-for-all that those with PCS are particularly desperate for.

Which is fine, in theory, but problems specific to taking with taking them for PCS are that they both reinforce the mindset that "I have something physically wrong with me that I need medication to fix" (more on this below) and they cause changes to the brain themselves that might cause attention problems if you take stimulants for an extended period and then stop (see here). This goes beyond withdrawal and the problem of tolerance and into changing brain chemistry that was possibly better off before the meds, or just needed more time to adjust itself. Most stimulants have a rare side effect of causing sudden cardiac death, and using them for any purpose other than ADHD is considered "off-label," meaning some insurances won't reimburse the med cost and there's little research on their use after traumatic brain injury.

All that said, the pull to use stimulants to clear the PCS mental fog is strong. They make such a substantial difference in my productivity, my mood, my concentration, my error rate, even my proneness to making dangerous moves when I'm driving (or say, last night when I lit a kitchen fire long after they'd worn off), that anyone who knows me well can tell if I've forgotten to take them. My husband has been known to go back three times in a day to bug the pharmacist to get whatever approval is needed to fill the script because things will collapse at home over his next 3 or 4 day shift rotation if I'm not on meds.

When research is done, it shows their effects are--as I've experienced--substantial. Night and day, even, making me wonder if multiple concussions can actually cause am ADHD-like condition (here). And I'm not the only one. My posts on this issue are my most popular, and there's not a lot out there from actual experts. 

So I'll share a couple of articles that explain a little more***

B. Johansson , A.-P. Wentzel , P. Andréll , C. Mannheimer , L. Rönnbäck
Brain Injury 
Vol. 29, Iss. 6, 2015

Michael G. Tramontana , Ronald L. Cowan , David Zald , Jonathan W. Prokop , Oscar Guillamondegui
Brain Injury 
Vol. 28, Iss. 11, 2014


And then I'll say that I think this "off-label" use of stimulants should be much more widely studied so more individualized recommendations can be made by physicians, and more informed decisions by patients who want to make good long-term decisions for their health at the same time they're desperate for relief and one or more TBI's make it especially difficult to balance all the risks and benefits well. Kind of like taking strong pain meds for severe and chronic pain. 

Is there an alternative treatment that doesn't involve meds? If so, it might be something like the DOCC Program I'm writing about this month, focused on retraining neural circuits. Treatment of any condition with both mind and body components (called neurophysiological syndrome in the Back in Control program) has shown that a psychological approach for chronic pain is much less effective if the patient believes there's a medical solution possible. 

My experience is that stimulants are not a solution, but they are a very effective treatment. Ideally, one could "unlink" the belief that PCS is solely a medical problem from the fact that meds are making it better, but I'm not sure that's possible. More and more I think I need to take an extended med vacation to build up my inherent cognitive skills, and convince the balking parts of the brain that I'm fine. Just as someone could probably not finish this program if they were still on increasing doses of pain meds, I'm not sure you can do it on increasing doses of stimulants either.

We'll see. After the holidays ;). 

Love, Lisa

***if you can't get these articles at your library, email me and I'll get you a copy from mine. 


Tuesday, October 27, 2015

Mind Change Day 27: Taking Stock

Another "skip-ahead" task I did from Stage 4 of the DOCC system is the Personal Business Plan. Although there's certainly the tug to "wait" to do this until...well, I don't know--until I'm more functional, I suppose...until I'm more of my old self, and doing this is easier--this is one of those things that is pretty much never easy.

And yet, doing this self-assessment was another thing (like yesterday's post on Getting Organized) that was worth the concentrated effort as soon as I started. Here's the link to the online suggested template, though of course you can do this in any format that strikes your fancy. But this one worked for me:

Because life doesn't wait for you to be at your peak before it gives you choices that matter.

Self-Inventory Template

Overview of self today:
Core Values
  • Self
  • Family
  • Friends
  • Career
  • Finances
  • Giving back
Character
  • Strengths
  • Flaws
Skills
  • Highest (expert)
  • Strong (Competent and can contribute)
  • Moderate  (competent)
  • Light (participant)
Dreams
Where do I want to be in five years?
  • Overview
  • Specific areas
    • Self
    • Family
    • Friends
    • Career
    • Finances
    • Giving back
Action Plan
  • Each area
    • Specific steps
    • Time frames
 And having this written out keeps you from panicking, avoiding or minimizing their importance. Much of the critical stuff in life doesn't come with the loud, annoying Nerf football sound announcing it's incoming. Some of it's silent.

This makes listening and making those choices much more simple.

Take a couple of hours, get started, and come back to it when you have another idea. It'll be done in a day or two and then you'll be relieved of another bundle of angst you carry.

You're welcome ;).

Love, Lisa

(P.S. Three More Days of daily posts and I'm finally getting faster at them. Under two hours for the last week. My goal is under one hour but that might be a pipe dream. Nearing one hour would be plenty. It definitely helps when the clock is about to strike midnight. Deadlines are--apparently--awesome ;)).

Monday, October 26, 2015

Mind Change Day 26: Get Organized

To balance thinking, feeling and observing with action in the DOCC program, in July I followed the Stage 4 step on Getting Organized. Along with my amazing productivity blogging this month (except for today, of course), this is one of the most visible and significant markers of progress and change for me during this program.

My organization has been really terrible since my injuries and getting a bigger wall calendar wasn't the solution. Yes, keeping track of the kids' appointments is important, and yes lists and stickies help, but the problem was larger. Though my work wasn't my purpose in life, it was important. There was a void. And "keeping busy" made things worse for two reason.

  1. I don't have appointments with people all day anymore, and meeting with them isn't my job. I actually have to produce something tangible in order to feel productive, and unless your job is in manufacturing, this is hard.
  2. That "something" has to be more than what I "produced" when I was working. I always made meals, I always did laundry, I went grocery shopping. For me these go in the category of "living." And writing was a natural way to produce because I was already doing it, and because I could do it in silence (major key). But productivity with writing is especially difficult because it's about creating something unknown, with only a vague sense of how long it should take, and what steps are needed. Beyond "word count," which writers obsess over but only gets you so far, there aren't many benchmarks short of "finished." Or "sold." 
So I needed to find a way to a) track the minutiae I thought was important, b) remember what I'd done each day so I didn't beat myself up for getting nothing done and c) create a system that helped my track writing and other projects, using d) the things (to do lists and a schedule) that had worked in the past. 

The Back in Control program recommends Getting Things Done, and of all the things I've tried, this works the best for me, albeit in a simplified, somewhat sporadic form (a creation still taking form, let's say). First let me tell you what doesn't work. This nice workflow diagram on the right. 

Way, way too complicated. I don't even understand most of the book once David Allen goes beyond "here are the problems you're dealing with," which I totally get ;).

But the top half of the diagram made sense when I saw it in action. Here's the close up of the top half, in the collecting of "stuff" (ideas, tasks, resources, etc.) and what to do with it: 






I do need my mental cache free of clutter, and trying to remember everything that came at me took it all up and then some. Finding a place to store and sort all this "stuff" was freeing, and helped me relax and focus on learning new things (or relearning old ones). I used the GTD hack by tacanderson and this book I carry around with me (in a me-adapted way) works pretty great. 

When I use it. Which is still only about twice a week, but I force myself to write what I did on the other days so I can keep track. This visual memory system has been crucial to my setting and reaching goals over the past few months. Writing down good ideas before they're gone saves me so much time and struggle in trying to remember them later; I was always doing the equivalent of looking for my keys, for hours and hours a day. "Who was I supposed to call?" "What did we just run out of?" 

All this is pretty much gone. 

Filing systems didn't work for my re-locating paperwork (like, say a prescription) because once the papers weren't visible to me, I couldn't even guess where they might be. So my husband hit on the idea of filing everything in shoe and sweater racks. This was downright brilliant. Nothing fancy but stopped all the moving around of "stuff" that got everything lost. 


 
That's pretty much it.

Taking care of things that take less than 2 minutes right away. 

Writing down everything else, getting it into my daily book and sorting through it a few times a week. 

Making visual organizers for stuff I need to keep.

All combined to free me up to the point that I could devote more time and energy to this program. 

Less wasted mental energy and self-recrimination. Fewer mistakes. Not as much conflict over who put what where. All good and better. 

So although this is Stage 4 stuff, you can (and should) find something like this that works for you too. 

Or at least works when you remember to use it ;).

Love, Lisa


Sunday, October 25, 2015

Mind Change Day 25: The Scale

Today the beach was abandoned and warm, my favorite combo. At low tide you can hop across the rivulets, climb over the rock jetties, listen to the seagulls drop clams onto rocks--all great for getting lost in the moment's flow and letting go of thoughts.

But one poorly-judged jump soaked my shoes and that's all it took to shift me out of the moment and into my head. I thought about that jump, and how it typified how hard it is to balance being comfortable and taking risks because they rely on judgement, the scale that weighs them both and makes the call.

Yes, I'm still working on Stage 3 of the DOCC program for my post-concussive syndrome. Distancing myself enough to see how I'm doing with balance.

Most of the time we think of balance as dichotomous:

  • family time vs. work 
  • duty vs. pleasure
  • others vs. self
But all have this third component, the judge who makes the choices when the two come into conflict. 

One of the things that sucks about a brain injury is that judge is gone, or acting like she's drunk, stalling on decisions, veering from one extreme to another, ruling with a "what the hell, let's get this over with" philosophy. 

I'm way down the road to recovery so I've got my judge sober and on the bench but she still struggles to make a good ruling, especially when there are not only two but three things to balance. As we all know from grammar school (or photography), friendships of three are unstable, listing one way and then the other because now it's about "equal," not about what feels right, 

My biggies in terms of unstable tripods:
  • Recovering lost skills, learning new ones and relaxing into those things I do well
  • Dividing time between my family, my marriage and myself.
  • Trusting what I think, what I feel, or what I'm told
  • Writing new stories, revising older ones and taking classes that will help me in the future
  • Focusing on returning to work, choosing a new career or living the best life I can now
  • Wondering if someone can heal me, knowing I need to heal myself, accepting myself status quo
The theme in a lot of these is considering the past, future and present but to live well, we need all three. The key to happiness and a productive life is finding your fusion of all three, but how? 

I titled one of my posts "Post-concussive mud" because of how often I get bogged down in the muddle of competing desires or demands. Balancing all three equally is the simplest, but rarely the smartest. No one said balance was about hanging onto the middle but with three anything else tilts. 

The center instead needs to be a fulcrum, transferring energy one way and then the other, Adjusting, modifying, holding and overseeing. Weighing and then deciding. Judging well. Wise.

Just like the Serenity Prayer triad: change, acceptance, and the scale that knows the difference.

Love, Lisa

Saturday, October 24, 2015

Mind Change Day 24: Transformation


Do you watch HGTV and other home improvement channels?

I'm hooked and I think it's because each house they tackle is a blank slate, and each project a transformation. 

Shows like Extreme Makeover are entirely creepy because people can't be renovated from the outside. 

They need to rebuild from within. 

I suppose there are people who organically rebuild and change, update and evolve every day of their lives. 

But most of us stay on one track until jolted off of it.  Pick ourselves up in shock. 

Wander over to another track and slide ourselves onto it, adjusting our speed and hoping we're welcome. 

Then comes the day we need to build our own track, and decide on our own speed. Pick our scenery. Latch on the freight we're willing to carry, and unload what we're not. 

After watching the videos I linked to yesterday, I don't feel so far away from Stage 4. It's within reach by the end of the month, theoretically. 

I just need to unload some critical baggage, and take on more accepting companions. 

Then pick my track, always the most unsettling step...

Love, Lisa



Friday, October 23, 2015

Mind Change Day 23: Still Here

So here are the steps I've worked on in the DOCC/Back in Control Stage 3 for the last 2-3 months, all in the pursuit of recovery from my head injuries:

FIVE STEPS

Step 1—Understand Awareness and Unawareness
All of us perceive ourselves as aware. It is a core identity. Any labels we have on ourselves or others, including “being aware” blocks us from actually being aware. It is first important to understand the various facets of awareness in order to “wake up”.
  • Learn about true awareness
  • Its role in the reprogramming process
  • Become aware of your “unawareness”
Four levels of awareness
  • Environmental
  • Emotional
  • Judgment/ “Stories”
  • Ingrained Behavioral Patterns

Step 2—Environmental Awareness-”Active Meditation”
Most people cannot control their mind with their mind.
  • The more you try to slow down your mind the faster your thoughts will race.
  • You can calm your mind with your body.
  • Using simple methods you can effectively connect your nervous system with the current moment.
  • It is a learned skill.
The term I use is “active meditation”.  It is the tool that will allow you to fully experience your day.
Step 3—Emotional Awareness
What you are not aware of can and will control you.
  • This step in some ways may be the most challenging part of the whole DOCC project. We don’t like negative feelings and we engage in many creative ways not to experience them.
  • Suppression of thoughts, emotions, and imagery consumes a tremendous amout of mental energy.
  • This is one of the parodoxes of the mind. As you become aware of your emotions and allow yourself to experience them they will lose their hold on you.
  • The first step is awareness.
Step 4—Judgment/ “Stories”
The vast majority of our lives are run on stories that we have about ourselves or others. Most of these stories are based on our own perception of reality and not actually grounded on what is actually happening.
Step 5—Ingrained Behavioral Patterns
Your life perspective is programmed into your brain during the first twelve years of your life.
  • EVERY interaction you experience the rest of your life emanates from that foundation.
  • If your parent’s baseline state was that of anxiety or anger then you will not be able to recognize it in yourself or others. It is your norm.
  • You have to be both open and determined to figure this one out.
  • You must also be humble.
  • Also remember that play pathways are permanently etched in pathways. They are not as difficult to rediscover.
RESOURCES
“Unlearn Your Pain” by Howard Schubiner
“The Art of Living” by Epictetus (modern translation by Sharon Lebell)
Video: Cinema Paradiso – short version
Support person–this is the level where you will start looking upward and outward
  • Life coach
  • Psychiatrist/ psychologist
  • Religious leader
  • Healer

And here are the criteria to move onto Stage 4:

CRITERIA TO MOVE TO STAGE 4

This stage has no time frame, as you will be referring back to it frequently.

That all sounded pretty much like what I've been doing so I declared myself graduated (as I did to Stage 2 with a dangerous sense of glee) and went to Stage 4. The first exercise is this:

Stage Four: First Step

CONNECTING WITH THE LIFE YOU DESIRE

When you are in chronic pain life becomes very heavy.  You evolve into a lifestyle that is just surviving.  You are just trying to keep your head above water dealing with a significant amount of stress.  Additionally, you are carrying a heavy pain burden.  You may have forgotten what it is like to live your life with deep joy and excitement about the possibilities.  I would suggest an exercise that I have personally found helpful.
  • Find a quiet time and place where you can just think and possibly go into a meditative state.  Think back to a time of your life when you were the happiest.
    • Then visually take yourself back there, trying to remember every possible detail about that era of your life.  Remember:
      • Dreams/ goals
      • Attitudes
      • Friends
      • Activities
      • Feelings and emotions around specific events
      • Spend as much time as you can with this exercise and repeat it a few times
      • Once you have really internalized that joyous period of your life then sit down again and fully experience your present life
        • Compare it visually to the era of your life when you were the happiest
        • Note the gap between then and now
        • Make a commitment to get that vision back
        • Write it down in as much detail about the kind of life you want to regain.
          • Don’t worry about creating a specific plan right now.
When I sat in this exercise I was aware, right away, of how painful, how mournful the experience was. And I was loathe to admit I wasn't ready to move on yet because I want to be a good patient and in control of my health and resolving things because I'm working really hard on this, which all comes down to...

my not accepting that I'm not in control of my recovery.

It may happen. It may not. I can control how much time and effort I put into this program, and into trying to improve my cognitive processing speed,my rate of speech, how much I make sense vs. veer left and right off topic like a bumper car.

But I can't make this happen with sheer will or perfect patienthood ;(.

I'm still firmly in Stage 3, and now I have to watch the video I skipped on perfectionism, because it's a problem.

I actually skipped the movie and videos above, because it's hard to listen to movies or videos. Reading is much easier. But I do believe that my brain  needs multiple inputs, in multiple formats, and after all I live live in three-dimensional technicolor and surround sound so I can handle these assignments. Then connect with my prior, most joyous life.

Gulp.

There's something about Silverlight I need to download but my computer keeps shutting down. Is that a sign? I'll let you know if I get through this...

Tomorrow.

Love, Lisa


Thursday, October 22, 2015

Mind Change Day 22: Why Are You Here?

Today's step is on ingrained patterns, and the suggestion that you might be close to yourself to see your global patterns of behavior.

You think ;)?

I went to my glorious nephew's confirmation tonight with a long-range camera lens. Mind you, I am not supposed to be taking pictures in Church. I know this. And yet--I took pictures until my brother told me to stop.

How can you not take pics when your nephew looks vividly grown-up, and your son is the sponsor? And you have a camera with a long-range lens in your hands? Of course you take pictures. Yes, here you go, a little postcard:
 But you're a little too close, aren't you? In this picture you really can't tell what's going on. They could be at a Bar Mitzvah or wedding or graduation or suit fitting. To understand what's really going on, you need a broader lens.

In other words, get some therapy. I have, and once I got my head around my inability to get the therapist to see my point exactly as I did, it was very freeing. Therapists are not a fan of the petty and make sure you focus on what's really important, at whatever pace you're able.

But also: get perspective in other ways too. One of them is to think more about your purpose on earth, and your life philosophy.

Is life a pinball machine of random and I have only bumper bars to influence what happens?
Or is my life unfolding as intended so I can relax, sit back and know that every day I'm doing exactly what I'm meant to be doing?

I'm middle ground on this one. I'm here for a reason, but it's up to me to find and fulfill my purpose.

Skipping ahead to Stage 4 (because I am a skimmer and skipper to orient myself before I go back and read something in depth), there's a step in "Get Organized" on picking and learning an organizational system, and part of Dr. Hansom's chosen system (David Allen's Getting Things Done) still comes down to this: what is your mission in life? And is how your living aligned with that belief?

Skipping back to Stage 2, anxiety is at his heart a misalignment of what you're doing and what you think you should be doing. These two things rub together and cause cognitive dissonance, that unsettled feeling that you're off the mark but unclear why. Whether you find the biggest "rubs" and fix them because you realize they're not consistent with your purpose, or personal philosophy, or goals in life, or behavior as pointed out to you by a therapist or fair-minded loved one, the end result is the same:

The more you do what you're on earth to do, the less you'll feel anxiety over the time and energy you spend on all the rest.

We're nearing the end of Stage 3, and this 30 day blog project. How far will we get in using mind-body strategies to treat my post-concussive syndrome?

No further than I've gotten in the last six months (naturally). How far is that? Stay tuned and think deep ;), just for today.

Love, Lisa






Mind Change Day 21: No Judgments

Today's step in the DOCC program I'm trying for my TBI recovery is to become aware of your judgments, and how they affect your life.

The main post is here, and focused on the teachings of the Roman slave and philosopher Epicurus,

Here's a gem from the Epicurus interpretation by Sharon Lebell:
Things and people are not what we wish them to be nor what they seem to be. They are what they are. 
And if we call them by their right names, they lose their mysterious power over us, as neuroscience is beginning to show us (via The Upward Spiral and the Barking up the Wrong Tree blog) and as Confucius told us more than 2500 years ago.


I made this graphic on water because lots of philosophy boils down to Helen Keller for me. How did Annie Sullivan, in all her frustrated brilliance, get Helen to understand that experiences and emotions and objects had labels? She signed the letters into Helen's hand under a water pump.

But why did Helen grasp the concept as opposed to--say--tearing out Annie's hair? Because through all the raging confusion of not being able to see or hear, Helen still knew love and safety. She hungered for knowledge and a way to communicate. She understood Annie was trying to teach her something, not knock her down or steal her hair bow. And though it was an incredibly tough concept to grasp out of linguistic nothingness, once Helen understood this one truth--that the letters spelled into her hand represented various parts of the world--everything built up from there.

As Alex Korb says in The Upward Spiral, and as applies to the Back in Control focus of this blog:
Everything is interconnected. Gratitude improves sleep. Sleep reduces pain. Reduced pain improves your mood. Improved mood reduces anxiety, which improves focus and planning. Focus and planning help with decision making. Decision making further reduces anxiety and improves enjoyment. Enjoyment gives you more to be grateful for, which keeps that loop of the upward spiral going. Enjoyment also makes it more likely you'll exercise and be social, which, in turn, will make you happier.

I have opinions that make me unhappy. Why do I keep them? Why not let them go, knowing that I could form or borrow another one that had the opposite effect?

For example: Did I deserve my head injury?

Either "yes" or "no" has bad connotations. Yes and I'm self-flaying. No and I'm a victim. Either way I'm judging.

How about "stuff happens and it's how we handle adversity that shows who we really are." I like that opinion a lot more, and it will provide "upward lift" for my mood and thinking in ways that ruminating over fairness in the universe (or rather lack thereof) never will.

Okay, off to hug my kid.

Love, Lisa

Tuesday, October 20, 2015

Mind Change Day 20: Emotional Awareness

While it would be lovely to spend the last 10 posts on environmental awareness--soaking in sights and sounds and tastes and noises and sensations--that is (for me) the easiest part of this program, the one I've had the most practice with. I'm alone a lot, I'm sensitive to sound, and I can slip into a mindful hyperawareness with relative ease and a reminder.

I still have to remember the reminder, though, and pull my attention back from rumination when I'm having a rough day. Sensory awareness is the perfect foil to rumination:

  • first, "catch" yourself ruminating and write down the thought
  • then analyze what the ANT (automatic negative thought) is, and write it down
  • see where you have a cognitive distortion, and what's a more accurate interpretation of the event
  • crumple the paper (I'm not a ripper) and throw it away
  • focus on how you're okay in this moment, and pick a sensory detail around you to ground you
I also am mindfully aware of my senses when I walk, when I'm in bed and can't sleep, when I'm taking a breather from a group or a lot of noise, when my kids raise my ire, when I'm driving quietly, when I'm exploring a new place, when I'm sated and happy--I could do with more regularity (sitting for 10 minutes morning and night in a more meditative kind of head space, for example), but this is a strength.

What is not? Emotional awareness. Remember Stage 2 and all my objections? I will not hop back on that roller coaster but I will say that if I can find a way to slide away from a negative feeling I tend to feel successful, like I evaded the slippery beast. Even when I know it will turn around and bite me in the rump. 

How do I know this? Elongated experience.

Tonight I revisited something that happened 2 weeks ago with my husband something that was not the topic of conversation, something that I had prided myself on sucking up because complaining about it was pointless. 

Except, of course, it wanted to be heard, Got me all riled up, reliving it. Yes, Mark looked pained, and sad. I apologized for the confessional rant (it was over something I'd completely locked up on, and felt both guilt and anger over the struggle), but I had kind of expected this to show its ugly face, given the chance.

It did. 

Then I focused on calming the hell down. My face was flushed, my voice shrill, I was swearing a bit, and though we were in a booth at a restaurant I knew anyone who passed by or was in a nearby table would hear how keyed up I was, and how hard it was for me to say why. 

We talked about what could be done differently next time. This was a short conversation. What I did had basically needed to be done, and I did the best I could. Moving on was the key. 

I said that I'd feel better in our bedroom when I got home, There's a corner chair that is my favorite place to sit. I had work to do there, a lot of books, some All-sorts, a fabulous lamp from Costco. Soundproofing on the door, so it was quiet. The rug was out front drying and I asked if we could bring it back in, that upped the coziness factor. 

Then I settled in and settled down. It was a physical kind of agitation and being physically contained helped. If it was more mental, I would have talked in circles until I let go of my tail, then done the same thing. The kids came in and there were some troubles but I stayed seated and let my husband handle them. Annoying news came in via phone and I passed it on to him with a promise to deal with it tomorrow but didn't otherwise react. I got work done. My husband said dinner had been nice. It had, with this one interlude of anger and sorrow. 

No...it had been nice. I thanked him, and kissed him. The food was good. I loved his company. 

For me, the key to emotional awareness isn't avoiding emotional outbursts. They happen, and I'm not a taking-prisoners kind of arguer.The reasons I hadn't complained at the time were valid (mutual exhaustion), and this wasn't a bad time to process my anger at myself and others over the events. 

For me, the key is apologizing (when appropriate), and then getting myself back to baseline before so I can let go of the muscle tension, the clenched jaw, the tight throat. If not, they'll build into a bigger outburst, over something less valid. Then I'll look like a giant jerk, which I hate. 

So, minor success? 

It will be if I sleep ;). 

Love, Lisa

Monday, October 19, 2015

Mind Change Day 19: The sound and the hurry

There was a freedom in listening to mass in Polish today at the funeral of a friend's mother. No need to struggle through the details of what was being said, just enjoy the music of a language that sounded like "showa showa" every few lines, topped off by a gorgeous soprano voice singing Ave Maria and Amazing Grace. I relaxed and let the peace of those moments meld into prayers for the soul of Jadwiga and her family.

Then I went to the luncheon afterward with my mother and daughter and I listened to my friend talk about his mom, their immigration from Poland, their life here in Connecticut, where they lived and worked and how they got by after his father died young.

All really gripping stuff. I didn't catch everything but I know his voice, he speaks relatively slowly and I just asked if there was something I missed, as did my mom ;). These are questions we don't ask each other at picnics or in bleachers, though of course conversations would be more interesting if we did.

Then we moved onto the social conversation over lunch with others at our table and--man, I had no patience for it. The effort I had to expend to understand the cross-currents of conversation, of who worked where, had lived where, had been where, was too much. I tuned out and no one really noticed. I was ready to leave in a hurry.

What if you had to pay $20 to chit chat with people you did not know, and would not ever know, just to be polite. Would you do it?

What if you had to pay $50?

I felt like keeping up with the conversations and contributing something would have cost me the equivalent of about $100 so I smiled, nodded, checked out the dessert table (which provided the excuse to get some cookies out the car, slowly), checked in with my friends at another table, and then parked myself behind my mother so she could field all the random "oh, do you know...?" questions and I could drink black coffee, focusing on the heat on my tongue and the weak bitterness of the brew.

Processing sound is a significant PCS symptom for me, and mentally exhausting. I could have gone home and avoided the luncheon, but I'm really glad I went. I also saw how little anyone else cared whether I spoke or not, nodded or not, listened or not, as long as someone else did (thanks, mom).

I wonder how often I stress myself out doing something that costs me the $100 equivalent of mental effort for nothing concrete in return. No peace from the mass or communing with spirits; no deeper understanding of my friend; no history of Bridgeport I could try to hold onto in case I needed it one day. Just listening to people talk about themselves and comparing themselves to each other. All of them were nice--the woman across from me was downright mischievous--and they intrigued me in a general way, but there would be no relationship with them ever again.

I had to cut bait.

In the stress management of Back in Control, Dr. Hanscom talks about whether having high expectations of yourself adds stress and pressure that worsens symptoms, and while I'm not sure that chit chatting requires high social expectations, I do think it's rude not to join a conversation you're part of.

But was I being rude?

Have I tried all these years to compete and compare and make myself memorable to people who I will rarely--if ever--see again? If so, was doing that fun? Did it help pass the time?

Not sure.

All I know is that using the reprogramming structure of "Is it more important to be seen as polite in this situation or to lessen mental fatigue?" I chose the latter, and no one really seemed to notice.

Then I sat back and listened to the "showa showa" sounds of the Polish conversation around me, and was again at peace.

Love, Lisa




Sunday, October 18, 2015

Mind Change Day 18: Taste, Posture and Blink

I do believe in what Dr. Hanscom says about positive psychology: if it's bad, it's bad, and sugar coating it is just being dishonest with yourself, but having positive experiences when you have a choice is crucial.

And I think that when you have an experience that could be interpreted one of two ways (I did okay; I messed up) then focusing on the more positive side is the way to go, assuming the situation is interpretable either way.

As most situations are.

I went to Providence this weekend with one of my daughters, to see another for Family Weekend. The plan had been for my husband Mark to come but he was trapped at work and rather than agonize over whether there was any way to pick the lock and free him (unlikely), I said okay, I'll miss you but I'll be fine.

After the fact, this could be seen as either positive thinking, an affirmation, or the truth, depending on your standard of "okay." As I said to my Mom on Friday during an impromptu scrapbooking crop, I like using the "well, at least no bones were broken, no malignancies found." But that is a bit dishonest.

In truth, it was a struggle, as are most days. Why not have these struggling days in Providence?

So yesterday's awareness was focused on sights, and that was super-fun. My favorite post by far.

Today I decided to be more aware of taste, and that was easy. I like eating, and drinking, and Sunday has extra servings of breakfast, which is my favorite meal. This was fantastic:

from Nick's on Broadway brunch, thank you very much
But you only eat for about an hour a day (even if you mindfully savor slow food; the tasting itself is intermittent) so I doubled-up on other sensations.

Posture, for one. I realized a few months ago that I look down a lot these days. Hunching over even led to some arm pain and tingling from curved shoulders so I am much more mindful of having shoulders back and chin high. Helps my back and my confidence and my observations.

So when I misjudged the distance of the restaurant (by a lot) and it was cold (and we walked), there was a showdown outside the restaurant over the dilemma, which was:
  • walking a couple of miles instead of a couple of blocks made us irritable, and cold
  • the wait for seating was 45-60 minutes, and there was little room inside to stand (my oldest daughter reminded me there would have been no wait if I had read more carefully where the restaurant was and drove us here before the crowds descended)
  • one of my daughters had on a down vest...and a t-shirt. Walking hadn't been terrible (she said, after being reminded to dress warmer but that was when we thought it was a few blocks) but standing outside was a problem.
  • the restaurant looked delicious, and very, very crowded
  • we hadn't seen other breakfast options on the walk there, nor did any pop up on our smartphones when we searched
  • some of us needed coffee very badly, and hadn't slept well, and there was no coffee nearby anywhere else either
By my definition, this was bad.

But one of the things I've been working on lately is snap decisions. When I ponder, I have a hard time making the best decision. Often it's an impulsive one impatiently when I run out of time or others run out of patience. But--oddly--when I make a snap decision it seems pretty close to what I would have done pre-PCS. That is, my "conscious" thinking is chunka-chunka but my "background" thinking is almost unaffected. I re-read Blink and its helped me reprogram my brain. Thinking and overthinking are--in my experience--one and the same, currently.

So I blinked at an assault of daughterly misery in front of this restaurant, along the lines of "let's just go, I can't wait here, I'm cold, it's too long, this was dumb," etc. 

And I felt my shoulders bowing forward, my chin dropping. 

So I shot them backward and said "I'm staying. You should too. We're hungry. This is our best bet." I also offered to go back and get the car during the wait so the girls wouldn't have to walk back in the cold, as penance. They said if I did that they'd follow because they didn't trust me to get to the hotel by myself. Insulting, since it was a straight line there, but we were embroiled in battle. Gauntlets are thrown. 

Shoulders back, chin high, I shrugged and went to wait inside the crowded entryway. My oldest daughter yelled "Hey, you hate crowds. You'll hate it in there." And I thought "okay, there are two ways to look at this. One is that I'm in a crowd and I made a mistake and I'm tired and cold and a mess. There other is that I made a decision, almost effortlessly, and apologized, and offered to make amends, and all along acted the role of a competent parent. No one could tell from looking at us that I'm not...No, I am a competent parent. A hungry one." 

And I sat down on the edge of a magazine pile and pulled out a book, and played with a baby waiting with her parents next to me, and ignored the cranky teens. 

Lo and behold, 30 minutes later I was drinking delicious coffee from cool "illy" mugs, and talking with my daughters like pretty-much nothing bad had happened. Watching what others ordered. Studying the whiskey choices (purely wishful thinking), listening to the whiskey convo going on between the bartender and the couple next to me (which I didn't consciously retain but still taught me something I'm sure I'll use in some way), talking politics and courses and study abroad and needed winter gear with my beloved daughter in college. 

How would I characterize the next hour we sat there and chatted and savored? Pretty great. 

How would I characterize the weekend? Pretty great. 

Head held high.

I'm not denying there were tense moments, but overall I blink and choose the upside over the down.

Love, Lisa




Saturday, October 17, 2015

Mind Change Day 17: Awareness

One of the major cognitive restructuring repetitions I do is to tell myself I'm not special. Susan Elizabeth Phillips says this, quoting (I think) Chuck Palahniak from Fight Club:
"You are not special. You are not a beautiful or unique snowflake. You're the same decaying organic matter as everything else."
This helps me, quite a bit. Also another couple of CP quotes:

“The only way to find true happiness is to risk being completely cut open.” (Invisible Monsters)

“Find joy in everything you choose to do. Every job, relationship, home... it's your responsibility to love it, or change it.” 
So: have perspective, take risks, and appreciate what you have right in front of you.

In the spirit of Chuck's wisdom, I bring you some of the beauty I was aware of visually today as part of my MBS reprogramming for postconcussive syndrome. I had a good day, doing nice stuff with two of my daughters and doing it relatively okay (they would disagree but they were impatient teens. I discount their complaints). This is part of Stage Three, Environmental Awareness (aka mindfulness). Here we go...

a hallway in List Art Center where anyone can paint anything. 

I loved this artwork but only really got a (lovely) peek

Red and green trees, like Christmas :)

Old and new-fashioned bike racks :)

The Atheneum in Providence. Just a regular city library ;).

Nice arch.

Girls saying "Come on, Mom...."

Good Day, Sunshine

Golden. Delicious. 


Apple Picking in Smithfield

Cold Storage. I guess that the advice for apples. 

Last Mums

Gargoyle Jack o-lantern. Last year we saw different ones at Waterfire.

Movie Scenes (Sound of Music Jack o'lantern
The Grand Finale at Roger Williams Zoo.







And as one bonus awareness, my toes lost sensation walking through the 44 degree cold for a couple hours but in the dark everyone's bumping into each other and making all kinds of faux pas. My kind of people and night ;). 

Love Providence.

Love, Lisa

Friday, October 16, 2015

Mind Change Day 16: Blog Action Day

I am midway through my 30-day blog project of looking at my Post Concussive Syndrome (PCS) as a form of Neurophysiological Disorder (NPD) and going through a months-long NPD self-treatment course to see whether it helps me further recover from my series of brain injuries.

But doing this project makes me vulnerable to criticism on multiple fronts:
  1. The program I am working on is designed and adapted for chronic pain rather than PCS. There's no evidence it will work, even though I think the concept of pain/symptom pathways persisting after parts of the body have healed because they've been well-used can be seen as pretty much the same process. So I'm curious about the overlap.   
  2. Reprogramming the brain through cognitive therapy and mindfulness is an accepted treatment for disorders that are considered primarily emotional (i.e. depression, PTSD) and it's not clear to me why there's such a differentiation between emotional disorders with physical symptoms (like sleep or weight changes that come with depression) and physical disorders with emotional symptoms (like anxiety due to chronic pain from a back injury), but because there's cultural shame in having a mental illness, those with physical illnesses often want no part of mental health treatment, even if it helps cure them. So doing this opens me to that kind of backlash. 
  3. I combine this treatment with meds, physical therapy, and cognitive rehab. There's no way of knowing (if I do have progress) which was most helpful. But I still think it's important to describe how it feels and what seems to be related. 
  4. This treatment involves self-disclosure, and that opens me up to the judgment of others regarding my choices, my interpretations, and even my writing. Expressing yourself is always difficult but doing so with a lot of cognitive symptoms means I may not explain a concept clearly, or may not understand it fully. I make a lot of mistakes. It's relatively easy to point them out. 
I want people to read this blog project because I want to help others with my kinds of problems.

At the same time, I worry about backlash. This year has been a horrid one for bloggers, with vicious, dehumanizing comments made on thoughtful blogs that range from provocative to innocuous, with especially disturbing remarks reserved for women expressing (perhaps) unpopular views. You can't unread or unthink that stuff when it's said about you. Writing honestly (and not anonymously) on the internet has become increasingly risky. 

I think the risk is worth it, but I hesitated for months before deciding to go forward. In my experience the comments on my posts have been constructive; some are spam and I screen them out. Only a few have been critical but those were not harsh. 

That could change any day, and although I think I'd keep going regardless, I'm not sure. I like that Blog Action Day 2015 is focused on having more respect for the efforts people are putting into blogging for the sake of helping others. 

I really hope it helps.

Thanks for listening, I'll be back tomorrow with my post on the next NPD step (Awareness). 

Love, Lisa 

Thursday, October 15, 2015

Mind Change Day 15: Acceptance

The reasons I started this 30 day blog project on using MBS strategies for PCS is that I am making a choice to focus less on damage and loss and more on living and love. As Dr. Hanscom asks at the end of this essay on the harsh metabolic effects of stress hormones adrenaline and cortisol, do you choose:

Anxiety, anger, adrenaline OR awareness, forgiveness, acceptance.

I choose green. Every day. (I added the colors because they are inner turmoil vs. inner peace)

Yes, I would like this choice to lessen my post-concussive symptoms, and over time I believe it has. In the 6 months since I started my speech is more fluent and what I say is more organized. I don't really track my symptoms (because that has the risk of reinforcing them) but I'm still hyper-aware of what I struggle with, in general clusters:

  • Oral language (speaking and listening)
  • Cognitive processing (keeping up with what's happening around me)
  • Mental focus (tied in to being productive and organized)
  • Decision making (tough to choose, and choose wisely when solving problems)
  • Memory (both forgetfulness and flat-out loss of many events)
  • Behavior regulation (will do something impulsive before thought catches up to feeling)
In addition, since starting the DOCC stages outlined in the Back In Control book, I'd add:
  • Insomnia (better but still a daily factor)
  • Anxiety (when confused/overwhelmed)
  • Anger (over losses and slow gains in recovery)
Plus my strengths:
  • Loving mom and family member
  • Voracious, thoughtful reader and fledgeling writer
  • Shameless romance flogger
  • Eager participant in life adventures
  • Appreciator of beauty and joys of life
  • Experienced and occasionally hard-nosed parent
  • Willing and devoted wife
  • Curious thinker and seeker of wisdom (or even a few knowledge nuggets)
  • Slow-but-deep learner
  • Lover of libraries, bookstores and beaches
  • Camping enthusiast (with occasional bouts of hiking)
  • Blogger trying to help others cope with life's challenges
I've come to these strengths through the reprogramming writing process, which is the heart of this DOCC program. Here's the blog post that helped me connect how and why the daily writing works, and this 30 day project grew out of some of these realizations, that:
  • thoughts have no power and are no statement of worth (so being smarter isn't better, which was about the hardest truth I had to face, and the one that freed me from needing to "recover" all my prior mental speed)
  • writing is meditation
  • telling a story rewires your brain 
  • ruminative thoughts are an out of control train (see essay here on unhooking and detaching)
  • you can only let yourself heal--there is nothing to "fix." 
  • there's no fairness rule in life, and no upside to being a victim
  • not being angry takes a whole lot of work; better to use that energy to deal with the issue
  • problems are opportunites
And the kicker: I may never get "better" and that's okay. I can be happy with who I am now, and just being "me" is enough. 

I swear! 

Here's a picture from this month as proof: 


I thus graduate myself from Stage 2 (not my favorite, though its work continues) and dive into Stage 3 tomorrow (much more fun). 

Stage 3 is where I really saw change, the gears seemed to sync. Can't wait to tell you about it.

Love, Lisa