“Hang in there.  You will get through this.  And there is sunlight on the other side.  You will not only survive, you will thrive.  I promise.  And I know, because I am ahead of you.  What I am doing is trying to take some of the sunlight and shine it back to you to help light your way.”

With the last blog entry I did about acceptance of who I am now – post brain injury – and many other things that are going on in my life, I have been observing myself and thinking about what I want to communicate about having a traumatic brain injury, to whom, and especially why.  Why do I even feel a need to mention the brain injury?

People tend to get impatient with brain injury survivors.  “Move on already!  Your brain injury was x number of years ago!”  Unconsciously, people equate a brain injury with a broken bone or something like healing from knee surgery.

Outsiders cannot grasp how much a brain injury changes who a person is; how it changes one’s sense of self to the very core.  After an injury the brain just works different.  Or, in reality, it doesn’t work well in certain ways so a brain injured person has to learn work-arounds.  And work-arounds do not always work well.  They take far more energy and are still faulty because the tasks that a brain should just take care of automatically now have to be done manually.  A brain injury survivor can no longer count on herself in the way she used to.

For instance, pre brain injury I used to travel around the country for my work!  But now I find myself gripped with anxiety about this short 5 day trip.  I have had stress nightmares about suddenly it is almost time to go and I have forgotten to schedule any time to pack.

The problem here is twofold.  First, the anxiety itself; the speed at which the brain goes into anxiety, and the amplitude of it – that is due to the part of my brain that is damaged.  I cannot “just stay calm and relaxed – everything will be fine”.  That part of the brain, which others take for granted, does not work that way anymore.  I am constantly working to calm myself down.  But it takes a lot of effort, energy, and time – time which I would have rather spent on other things.

Secondly, forgetting to pack sounds silly and like just a funny dream.  But it is the kind of thing I actually could do!  Forget to do or even think about something absolutely obvious.  Sequencing does not work well in my brain so I miss steps – big steps some times.

Even if there are no obvious outward signs, any person with a brain injury works phenomenally hard to engage the world in a normal fashion – harder than anyone with an uninjured brain can imagine.

Brains remap very slowly.  5 years, 10 years, even more – a brain injury survivor is still getting used to herself!  I don’t know when that stops.  I am still fairly new to this when you look at it that way.  Plus, in my case, the years of misdiagnosis “don’t count” because those were years of spiraling downward instead of upwards toward a new life.

Writing a post like the last one about acceptance, can be misleading.  When I say

… I am happy where I am and where I am going.  … It is not that I am entirely free of difficulties due to the brain injury but they are more a part of me now…”

people read that as – “Oh, okay, you are back to leading a normal life.”

No, I am beginning  to create a new-normal for my life.  The brain injury – all the work arounds I have to do to make my life work – is still very much a part of my current reality.   The goof ups, everything taking ten times longer than it used to, the inability to handle a lot of input at once – this is a “new me”; one that I am working to come to grips with.

In that light, it makes some sense that I still feel the need to mention the brain injury when I am sharing about my life.  To not acknowledge it, to feel I should not bring it up; to hide my vulnerability; to feel shame at sharing that part of myself – that is inauthentic.

Brené Brown, a researcher from the University of Houston studies authenticity.  In the videos below she talks about “whole-hearted” people who live life from a deep sense of worthiness and believe they’re worthy of love and belonging.   I will close with a quote from her TEDx Houston talk talking about her research on “whole-hearted” people.

What they had in common was a sense of courage. … the original definition of courage was to tell the story of who you are with your whole heart. And so these folks had, very simply, the courage to be imperfect.

They had the compassion to be kind to themselves first and then to others, because, as it turns out, we can’t practice compassion with other people if we can’t treat ourselves kindly.

And they had connection – as a result of authenticity. They were willing to let go of who they thought they should be in order to be who they were, which you have to absolutely do that for connection.

The other thing that they had in common was this. They fully embraced vulnerability. They believed that what made them vulnerable made them beautiful.

What I mean is that I am happy where I am and where I am going.  I am happy with who I am and who I am becoming.  It is not that I am entirely free of difficulties due to the brain injury but they are more part of me now and I just flow with them – or at least try to.

This morning I wrote a long email to a brain injured friend who is having a hard time and I said "Hang in there.  You will get through this.  And there is sunlight on the other side.  You will not only survive, you will thrive.  I promise.  And I know, because I am ahead of you.  What I am doing is trying to take some of the sunlight and shine it back to you to help light your way."

~

I have this thing that goes on with me that when my subconscious – or my guiding force  – is trying to tell me something, it hooks onto a phrase or part of a song and won't let go.  For days the line "If I should cross the water" has been haunting me.  It is from a song by Cindy Kallet called Cross the Water on a CD of the same title.

The idea of "Crossing the Water" has a lot of meaning for me.  It speaks to me especially now because I am "crossing the water" – leaving behind a lot of old baggage and beliefs – and allowing a new me and a new chapter of my life to unfold on the other side. 

Also, in the I Ching – The Chinese Book of Changes – "It furthers one to cross the great water" is a key phrase.  Its meaning varies slightly based on the context of the Ching it is in, but it essentially means taking on a difficult endeavor and persevering through doubt, difficulty, and adversity.      

Am I to the other side?  No, not yet.  But I have left the shore.  I am in the crossing and I can see the other side – not clearly but I know I am drawing near. . . . I folk-processed Cindy's song and added a last verse.

If I should cross the water with faith and loving friends,
And share the load and sail to shore to the place where journey ends;
If I should cross the water in word and song and deed
Oh If I should cross the water,  Oh, if I should cross the water,
Me –I will be.

It is delicious with crisp apples.  The missing part of the wedge was enjoyed with two Pink Ladies – who did not hang around long enough to be photographed, i.e. Yum!

What makes this cheese extra special is that I was given it today by a Whole Foods employee.  I had accidently left it in my basket and realized it after I paid for the rest of the groceries.  I handed it to the clerk to have him ring it up.  He looked at the price – which was under $5 – and said don't worry about it and handed it back to me. 

I have a strong hunch that he was allowed to do that.  He was empowered as a staff member of Whole Foods to make a decision to give it to me.  It was a smart choice because the store was busy and I am sure the people in line were thankful that he did not have to do a second transaction, but it also was a kind choice and much appreciated.  For the price of $4.27 Whole Foods gained a lot of points in my book.  It is a store I will keep coming back to. 

Things like this matter to me – empowering employees and also treating patrons well. 

There is another store similar to Whole Foods that is much closer to me.  But I use it only for emergency shopping.  Why?  I am sick of their fliers that look like they are advertising sales but are really just listing the prices they always charge.  It is insulting to my intelligence and confusing to my brain injury. 

When I mentioned my dislike of that type of advertising to two staff at that store (Ballard Market) the reply was "Oh, all the stores do that."   Nope!  I started watching the ads I receive from other local stores (QFC & Safeway) and no, they do not do that or at least do it to a far lesser extent.

The culture of an organization is defined by the Business Dictionary as:

Pervasive, deep, largely subconscious, and tacit code that gives the 'feel' of an organization … It manifests in (1) the ways the organization conducts its business, treats its employees, customers, and the wider community, (2) the extent to which autonomy and freedom is allowed in decision making, developing new ideas, and personal expression, (3) how power and information flow through its hierarchy, and (4) the strength of employee commitment towards collective objectives.

This is not new information.  Books and articles have been written about organizational culture for over 20 years – and probably longer!  The business world is also full of information about empowering employees to create customer loyalty.  It's the basics of good marketing!  It absolutely amazes me that some companies still don't get it.

Due to the fact that AT&T does not empower their employees I now have a Verizon iPhone.  Boy!  Did it ever feel good to tell AT&T goodbye!  So stupid on their part. 

I tried to get an iPhone way back in early fall but AT&T claimed I was not eligible for a new phone – ignoring the fact that I was on a month to month plan and using a 3 year old device.  I talked with people at AT&T by phone more than once, went into two different Seattle AT&T stores and the Seattle Apple store.  All of the employees I spoke with claimed they "could do nothing".  They all said that I could not get an iPhone until April unless I wanted to buy one at full price – around $600 – which came with a mandatory two year contract to boot.  Umm – I don't think so!

Of course after I switched over to Verizon -  I get a call from AT&T expressing concern and caring and wondering why I had left them . . . uh-huh!  A little late and a lotta false! And the thing is, I will never go back to AT&T if I can help it!  I do not want to be tied to a company where the lowly employees are not allowed to take action to rectify a problem . . . and procure a customer's loyalty.

Culture . . . it is what defines a company.  It is what defines customer loyalty.  And it is also what defines a good blue cheese. 

In short, I have not been blogging because I had been planning to move this blog over to a self hosted site. 

If and when I do it, the domain stays the same and you will not notice many changes other than some changes to the look.  If I do move it, I will post here and let you all know if you need to do anything in regards to your subscription. 

So why did that cause me to stop blogging?  Because I would have to reload all the photos and do some other big behind the scenes work I thought it would make sense not to add to more work for moving.  However I was anticipating I would make the move far sooner than this. 

Well, for many reasons I have not made the move.  So, I am going to try to get back in the saddle with posting more often.  I have missed blogging to you all!

Brené Brown, PhD. studies shame, empathy, vulnerability, courage, joy and love & belonging. These talks are enlightening, encouraging, and most importantly they explain a lot about how we – survivors of TBI and family members too – get caught by feeling ashamed of who we are now post injury.  Brené Brown tells us how to get out of the prison we can unwittingly create.  These videos have changed my life!

Given at the UP Experience conference in Houston, TX.

The UP Experience – Brené Brown – More Honesty: Less "How To"

This second one was given at TEDx Houston. There is a visually cleaned up version that is posted on the TED.com site but it is very fuzzy at full screen. This one below is the much higher quality original footage.

‪TEDxKC – Brené Brown – The Power of Vulnerability‬

This last video is from TEDx KC.

‪TEDxKC – Brené Brown – The Price of Invulnerability‬

I look forward to hearing what people think about these videos. As I said, for me they have been life changing!

I skipped out on a new year's eve party tonight because I was just too tired.  (I had my wonderful goddaughters here for most of the week – they just left yesterday evening.)  But then I ended up staying up anyway! 

I live on the side of a hill overlooking the Ballard neighborhood of Seattle.  I went out at midnight and watched the festivities. The fireworks were wonderful!  People were shooting them off all over Ballard and I had a wonderful view of them. 

It is pretty cool to think back to new year's night last year and compare it to this year.  I have come a long way in my healing and in reinventing myself into this new life.  I think 2011 is going to be a good year!  It is so nice to finally feel excited and hopeful about the future.

A few weeks ago I wrote the post Blessings of a Brain Injury.  I ended that post with:

I feel more deeply.  This depth and sensitivity of feelings is a rawness, an unmasked openness that I have not had in my life before; at least not to this extent.  I tended to protect myself from vulnerability.  Now that is simply not an option.

Now, I am not so sure that is entirely true.  I think I still am protecting myself from vulnerability.  I think as I heal some old behaviors – which never really left – are reappearing. 

What got me thinking about this was that on Wednesday I went out with a nice fellow from Match.com.

I am pretty certain I will not hear from him again.  I think he would say that he didn’t feel “a spark”. 

What causes that sense of “spark” to happen between two people?  What keeps it from happening?  And, more specifically, do I do something to keep it from occurring?    

I think I do.  I think there is some way that I am protecting myself from the possibility of being rejected and thereby creating the situation where I get rejected.  But it is more than that; it is that I numb myself.  I numb myself so much that I emit no sparks.  I emit nothing with which someone can make a connection.

Now people who know and care about me, especially people in the TBI community, might think that is crazy talk because I do not seem like that on the TBI network.  Ah, but look closer and you will see that very often I put myself in the role of teacher, supporter, etc.  That is a role that feels safe and comfortable.  It is not vulnerability.  However, to be fair to myself, I am also vulnerable at times on the network, but not often.

The word “uphold” comes to mind.  Hmm . . . some synonyms of uphold are buttress, bolster, defend, and justify.  These are not words that have much to do with being vulnerable.

I know with this post that I am barely skimming the surface of what I want to say – or more correctly want I want to be capable of saying.  I am not yet capable of saying more.  This is just the beginning of awareness that this is still a problem – a big problem. 

Last night I watched a talk entitiled The Power of Vulnerability. given by Brené Brown, PhD. I was going to put it in right here but then tonight I watched an even better one by her.  So that is the one that has the star spot. 

For me, Brené Brown’s talks are a beginning to help me unravel my web of protected numbness. I share her talk here in case it is useful to someone else too.  They are excellent talks!!!  Follow the link above to watch the first one, which she gave at the TEDx event in Houston.  This one below she gave later at the TEDx KC event – which I assume stands for Kansas City.

I have written before about how I have no filters.  Though that makes it near impossible for me to watch movies or tolerate any kind of conflict or drama, on the flip side there are benefits.  The lack of filter also causes me to be much more impacted by beauty and moved by music.  

Equally, the struggle to make sense of things – to connect the dots between thoughts and actions and actually accomplish a task seems to have created a different kind of connection.  While listening to a moving piece of music I feel or see ideas for multidimensional art pieces. Sunday night I went to an amazing concert by Hanneke Cassel and her band.  She has a wonderful piece called Scandalous.  While I listened to it I could envision a piece that would include my fabric art with images and sound.  Hard to explain here in words – hopefully I will someday create what I can see in my minds eye.  (Click on Scandalous to listen it.)

Another mixed blessing is the issue of not being able to multitask.  As frustrating and challenging as that is, it also has enabled me to be more attentive and present in the moment than I ever could be pre-brain injury. 

The biggest blessings will probably end up being the changes that the brain injury is forcing me to make.  I don't think I am at the point of being able to explain what all those changes are yet.  I am too much in the middle of rediscovering and reinventing myself. 

But here are a few that I do know:  I respect and honor myself and my needs far more; I can say No more easily.  Previously I would have been driven by "shoulds" instead of what truly would be the best choice for me.  I am far more compassionate and understanding with myself, and therefore with other people as well.  As mentioned above, I feel more deeply.  This depth and sensitivity of feelings is a rawness, an unmasked openness that I have not had in my life before; at least not to this extent.  I tended to protect myself from vulnerability.  Now that is simply not an option.

But what started this post is that I am tired of getting long winded pep talks about the future if I am honest with someone about what is happening with my brain in the present.  Being honest and open about a difficulty does not mean I am complaining or feeling hopeless or anything else. It means this is what is happening now.  That is all. 

Way too many times when I speak to people and discuss my deficits regarding memory, organizing and planning….the common response is, "that happens to me all the time and I don't have a brain injury".  So where does it leave me…more isolated, feeling more misunderstood than ever.  I guess it's human nature for people to want to make you feel better, by minimizing the deficits that a person struggles with, but it's like someone telling someone who just lost an arm…"don't worry you have one left"  G. on TBISN

** All the quotes in this article are from members of the Traumatic Brain Injury Survivors Network (TBISN).

The majority of the time I am fairly sure that the response comes out of the persons own discomfort with reality and feelings, or it comes from an upbringing that says it is impolite to discuss anything that isn't charming and delightful – unless of course it is gossip.  But gossip is about someone else so it is not uncomfortable.  However the same information given by a person about themselves is what a listener can't handle.  Why is it that we can talk about someone but not listen to someone?  What is it about our culture that makes people so very uncomfortable with a person saying truthfully what is going on for them?

I've been quiet for the last month contemplating life, working at rehab and trying to accept that I really may not ever be the same. This is scary stuff and trying to grasp everything in a comprehensive way has taken a toll not only on me but also on those who love me as well.  I have internalized this and I am unable to find an answer. I really do feel alone.  Trapped in a body that once did some very complex tasks but now can't remember to get a light bulb even though I have sticky notes everywhere reminding me to do so.  — TK on TBISN

People in the rehab field are very present with patients.  Yes, they will give encouragement for the future; a sort of reassurance that things can improve overtime.  They will comment on gains and progress.  But they do not negate what the person is currently dealing with. That honoring of reality is one of the biggest reasons why the rehab department is a place of sanity for a TBI survivor; sadly sometimes the only place of sanity.

Do you ever find yourself wondering if your brain will ever, EVER get it together?? It's like being stuck on the Tilt-a-Whirl at the carnival. Just when I think I've got something figured out, or have learned to cope with yet another "interesting challenge" that carny cranks the ride up again and off we go, into the wild TBI yonder… The view is unusual, to say the least, and the experiences can be startling.  Even after 30+ years, I still struggle with things that others (non-TBI) find easy. But at least I am alive and able to keep up the good fight. I may not be able to get off that darn Tilt-a Whirl, but I know I'm not the only one stuck on the ride. Popcorn, anyone?  — KZ on TBISN

The majority of people with Traumatic Brain Injuries stumble through life on a double edge sword.  While those of us who have no obvious signs of disability such as speech or movement impediments are usually quite thankful, the very "normalness" of our appearance can be the biggest bane. 

It's hard when people look at you and you Look normal, but they have no idea of the physical and mental stresses you deal with daily. I can't remember someone's name the first time I meet them, or meeting them for that matter. I've introduced myself to a few of my boyfriend's friends multiple times. — TD on TBISN

I now look ok and talk ok but oh do i wish sometimes i have "brain injury" tattooed on my forehead as people expect too much of me and don't understand the things that are going on in me that they CANNOT see. – LL on TBISN

My encouragement to anyone who does not have a TBI or any other difficulty?  Stop, pause, and question yourself the next time you want to offer encouraging words.  Did you actually hear what the person shared?  Did they complain or did they explain? 

Explaining is asking you to hear them.  Explaining is asking to be understood. 

Many people like myself, who can walk, talk, socialize etc…. are looked upon as though they can do anything. So many times I would walk into stores and ask someone where something was…. then get a look…because I’d stand there for a while, because I forgot what it was I had asked to find. If I was in a wheelchair and had a serious speech issue, it would be obvious. I am so lucky that I have my body relatively intact, although sometimes, it in itself, can get you the looks from people that your spaced out…maybe drunk or whacked out on something. So please remember that many of those issues a person deals with are invisible to you, and when a person asks for help, do what you can. G on TBISN

What is going on inside of your own heart, mind and body in response – or in reaction – to what the other person just said?  What is making you feel you need to give them a pep talk or minimize the issue?

Here is a worthwhile thought; “Intelligent people know the answer; the really intelligent people know where to find the answer; the most intelligent people know when and which questions to ask but above all the supremely intelligent people will know when to say nothing!” R on TBISN – (I don't know who he was quoting.)