Joyous man with arms raised sitting in wheelchair held aloft by people in very large concert audience

Accessibility is So Empowering

Last week, I attended a Skype meeting of my team for the Knowbility competition.   I spoke with members of my team (team Axis) and my adviser Joseph O’Connor about where we were in terms of development of my website, what had been done recently and did it work for me, and questions that I needed to bring up with the judges at the Pit Rally at Knowbility the next evening.

I found the meeting very empowering and supportive.   I learned from all of the members of my team about the kinds of things they were thinking as they were developing the website.  I learned about how a screen reader (accessibility tool for a person who is blind or cannot read the screen without assistance from a machine) would read the site and what coding needed to happen for a screen reader to read my request for left sided navigation.  I learned about font size and color contrast and the concerns that needed to be addressed there.  And I learned about how they saw my site which helped me understand more about my own thinking about my site and what’s not articulated in the text or architecture.  And I learned that I needed to know a lot more about what scientists knew about neuroplasticity before I could articulate it, and that even though I know what it is through my experience of it in my getting better since my injury that I don’t yet know how to talk about it very well, even though the increases in my neural pathways must underlie the increased functioning that allows me to be talking through skype with my team and addressing my teams questions and following my team and adviser to the extent that I am following them.   (And following them as much as I did made me appreciate how much I wasn’t understanding what they were talking about nearly as well in the last two calls!)

All kinds of information came together for me and I understood so much more about the concerns that they were already addressing to make my website more accessible.  I also had new learning about the state of the research (or lack of research) on design elements to address cognitive accessibility issues on websites.   And I began to understand just how much thought and effort my team and adviser had been doing already and were continuing to do to make my website as accessible as possible to people with cognitive disabilities.  I felt so supported and I felt so blown away by the work that had been done and I learned from everyone.  I felt like my head was about to explode (in a good way) with new ideas and connections.   I literally felt that I could feel my neural pathways strengthening and branching out and connecting and growing.   I do not know how correlated my experience of what my head felt like with what was actually happening to my neural pathways.  Hopefully someone more knowledgeable than I can tell me about that correlation that happens between brain change and learning and whether some aware people can indeed feel it or not.

Maybe I am just willing my brain to grow and the visualization that I am doing by willing and imagining it, promotes the growth.

Or perhaps since I know that my neural pathways have grown and developed in the past, I know to believe in brain growth.  Perhaps it will happen because it has happened before.  Perhaps, there is not a correlation to what I am feeling in my brain and my pathways growing.   This would be an interesting question to know the answer to!

I would like to say more about all the concrete reasons that I felt empowered, during that call.

But that will have to wait today because I need to limit my time on the computer and I have other things that have to get done today.

I do remember having an experience before my brain injury where I thought I could literally feel the pathways of my brain growing after new learning, when they finally started to develop (which seemed to take longer than I expected they should take).

So I will share my memory of that experience with you to see if you can recall a similar time when you knew you were learning something new in a way you hadn’t know it before.

I took calculus (or was it linear algebra?) in the summer time at the University of Texas to prepare for graduate school in economics.

Since it was summertime, the course moved quickly and we had three tests in a short period of time, maybe six weeks, maybe eight.

I found nothing intuitive about the math I was trying to learn.   In addition, the graduate student leading my section was very bright but his explanations of the work were not helpful to my own learning.  So I had to study really long hours and really intensively.

I remember feeling after the taking the second exam, that I finally was understanding the concepts that I had been tested on in the first exam.

And I felt that I could feel the pathways grow from the new learning (although I would have said it was just my brain growing at that time).   I could look back at the first test and understand all these problems that I had answered more by rote than anything else.   And now I could connect them and understand them!  Suddenly, I knew the material and could begin to apply it!

That is a description of what the experience felt like before my brain injury, and its how I felt after my meeting last week with my team and adviser.  Except last week the experience was even bigger.   During our call, I began to understand what my team was thinking about it a much more expanded way and how supportive it was of my own mission with my website.

How did I feel after our team meeting?

Here’s the visual that I want to leave you with.

When I watched the live streaming of the annual Accessibility, this Fall, I was impressed by a picture that one of the presenters showed about what accessibility is.

It was a picture of a woman in a chair (wheelchair) being held up off high off the ground and supported by a group of people (who did not need to use a chair to help them stand).   It was a very empowering photo of possibility when everyone works together to support someone who is differently abled.  (Please see bottom note now that picture has been added to this post.)

I looked at that picture and thought, I want to feel that kind of support around the computer and my cognitive deficits that limit my abilities.

After working with my team last Wednesday, I felt (and feel) what I imagine the woman in the chair felt.

During our team call, I felt lifted up.

During our team call, I felt supported (even more than I had already felt).

And honestly, I felt that together, the sky is the limit!

Accessibility is so, so, empowering.

—–

Bottom Note:

I came across my notes from the Accessibility Conference and found that Elle Waters had shown this picture and that it came from the Huffington Post originally.   Elle Waters sent it to me so that I could use it on my blog.

Two things I want to share that I realized when I re-read my notes and saw the picture.   I had remembered the person being lifted up as a woman, like me.   Looking at the picture, I believe he is a male.  I liked that in my memory, the person could be anyone or any gender.

And, I wrote down in my notes something important that Elle Waters had said when she showed the picture and is worth repeating.   I will paraphrase her from my notes here.   She said that true accessibility is about the crowd experience of lifting someone else up.   Its not about the isolation and frustration that the person without accessibility experiences–frustration or difficulty with new learning, or lack of access.   Its about everyone feeling lifted up by the access.

And that is what I feel and I believe that the rest of my team has felt as we have improved my website and learned and made the site more accessible.  We have all felt lifted up.

And we have all lifted each other up.

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New Learning and Website Design

I have written about the contest (the Open Air Rally) that I am participating in through Knowbility to make my website accessible.

We are in the final two weeks of the competition.  Its very exciting.

I had a great meeting with my talented and knowledgeable development team Team AxIS from Cognitive Interactive with my team leader Antonia and the lead developer Krishna and with my esteemed team adviser Joseph O’Connor on Wednesday night last week.
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The Gift of New Learning

I have had an incredible week of ups and downs.

I am going to choose to focus on writing about one of the many ups and what I have learned and gained this week.

Simply amazing!

My son turns 6 next week, and I am just awestruck by that fact.

All the years that we waited for him to come to us, and now he is turning 6!

And its just fascinating to watch his brain develop and his cognition develop.
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Automaticity Part 1

Last week, I wrote my first draft blog post about a term that I have learned called Automaticity.

I wanted to write about Automaticity because I knew that I was expereincing a huge increase in it, and that it was automaticity that was allowing me to do much more than my “previous normal” would allow.

I had titled the post from the week before “I did it!” because I was so amazed that I had been able to do so much and knew it was because my brain was changing and allowing what I previously could not get done in a given time period.
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Automaticity Part 2

I introduced the word Automaticity in my last post.

According to Wikipedia, learning, repetition and practice eventually allow the brain the ability to automatically respond.   An automatic response means that the mind is not trying to figure out the how to do it part (any more) of doing a task.   The how to do it part becomes automatic.  The mind just responds or acts out of habit.

You may not have even known that there is a procedural part and an action part of doing tasks. That is because by the time we are adults, most of the how to do it part is automatic.   When who to do something becomes automatic, its called procedural memory. When I had my brain injury, I learned that one of the connections that I had lost was procedural memory for a lot of everyday tasks.   I have had to relearn a lot of procedural memory in order to do daily tasks.
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Integration, Vision and Neuroplasticity

A dear friend from Washington DC who knew about my setback this summer called last weekend to see how I was doing and offer her support.  She left a kind and supportive message on my voicemail.

While walking that next day, I wondered how to describe concisely how I was doing when I got back to her.  In many ways I am better, my functionality is very improved and I feel well enough that I have begun the daunting task of seeing the doctors that I was not well enough to see this summer for followups.

In other ways, I am still struggling after the setback.
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A Good Doctor

I have begun seeing the Doctors that I wasn’t able to see this summer as a result of my medical setback.

This was a daunting task before this summer. I have so many doctors that help me with my health after brain injury and I have a number of doctors for my general health.   I have had to find new doctors after moving to Austin, and I am still getting my team in place.

During the summer, I had to concentrate my energy on getting back my health and functionality that I lost as a result of my dentist not understanding how fitting my mouthpiece might (would ?) effect someone like me who manages persistent symptoms after brain injury.

I prioritized well over the summer.   And I am successfully better and much more functional.

As I think about it, I am actually very lucky that my medical setback did not last longer than it did.
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More on Neuroplasticity

In last week’s post, I talked about how experiencing and believing in neuroplasticity gives me hope and helps me be optimistic about my continued recovery.

But neuroplasticity gives me so much more than that.

So I want to say more about what the changes that I am still experiencing are like.

I have had several exciting conversations about the neuroplasticity that I am experiencing this week.

One with Maria Romanas, an MD, who was interested in the neuroplasticity I am experiencing and how my vision therapy promotes that.

And another conversation that I had was with a friend from Thatcher Freund, a memoir writer.  I have known Thatcher from Junior High on as he is the brother of one of my best friend’s and the three of us did a lot together–in fact people used to ask if we were triplets.  Thatcher has been researching vision and neuroplasticity and what is known and utilized  in the dyslexia community.

I have been telling people that ask me how I am doing after my setback that I am in the midst of experiencing intense neuroplasticity and this week I feel full of energy and “clear as a bell”.

When I told Thatcher that I was experiencing neuroplasticity and felt clear as a bell, he almost jumped out of his chair and said “I am so excited you said that.”   He said, he could “see” how much clearer and more articulate that you are compared to the last time we had lunch (in December).

So we had a very animated conversation about what was going on for me.  Because of his research and interests and background as a memoir writer, he asked very probing good questions that I had a difficult time answering.   Its hard for me to get to concreteness on describing how my brain is changing sometimes and what I am feeling and how the neuroplasticity is changing my thinking right now.

But one thing I have learned in my journey to recovery is that if you give my brain good questions, it will eventually come up with answers.

My brain cannot come up with answers, quickly, so I don’t expect it to.

But I know that my brain will come up with them if I am patient and let it come up with them on it’s own time.

So my brain will give me the answers later.

Answers may come up when someone says something to me that “cues” me.  (And with a brain injury I have certainly learned how to look to others for “cues” to help me think or to help me stay on task.  So I know how to cultivate stimuli received from others to help me think.  I have been practicing doing this for a long time.  More on this later.)

And I know that answers may come when I meditate, so I cultivate a meditation practice.  And I know that answers may come up randomly during my day.   So I know to look for them to cultivate and harvest.  And I know to just let one of these processes happen and to be patient with my brain.   And they may come up as I write my blog.

A couple of things to say that I have harvested since these conversations about the neuroplasticity that I am experiencing:

1) The gains that I am having right now are specific to the deficits that my brain has been having.

I realized that its probably that since ” if you have seen one brain injury, you have seen one brain injury”, my gains are about me and are not necessarily true for others.  In other words, every brain injury is different.  In my mind, it follows that the experience of neuroplasticity will be different for everyone, which is why its important to hear how others experience neuroplasticity also.

2) That my gains from neuroplasticity are specific to the deficits I am experiencing right now.

Earlier, when I was getting treatment for attention and concentration issues, I was experiencing neuroplasticity around attention and concentration and by conquering those problems, I was able eventually to have more abstract thinking because my brain had changed to support more abstract thinking.

When I realized that my current neuroplasticity is specific to my current deficits, I figured out more about how to describe it more concretely.

This summer, I was sleep deprived and was getting head aches from muscle tension and thus I was at a lower level of functioning.

Now that I have resolved those issues from my setback, I am experiencing repair (neuroplasticity) around my “executive functioning” (which I was having before the setback).   Or at least I think its my executive functioning.   Someone described executive functioning as the “executive” in ones brain making decisions about priorities and what to filter out and what to filter in and how to do decide to do things in order and figuring out the steps to line things up.  A researcher at the Smithsonian in DC called it the ability to “get the trains to the right stations on time”.

So one way I am experiencing neuroplasticity right now is about categories and my ability to categorize.

Over the course of my brain injury, I have had a difficult time sorting things into categories.    An overly exaggerated example might be, if I were to sort out red and blue sock, post-injury I would inevitably sort some red socks into the blue and some blue in the red.  This happens because I wouldn’t notice that some red are in the blue and vice versa.  I just couldn’t see what keeps the category pure or in tact.  And it also happens because I may forget my sorting rule in the midst of the task (and not be aware that I have forgotten it).

I would compensate for this issue, by taking a second pass at sorting the red and blue socks, and I would notice some of the red in the blue and the blue in the red.  But I would not notice all of them, because of the same problems above.

So suddenly, I experience neuroplasticity around my sorting, and I can look at the red and blue sock piles, and suddenly see that oh!  there are still more blue socks in the red sock pile and still more red socks in the blue sock pile and I can “see” the things I couldn’t sort before and consequently make the piles more pure.  So suddenly I want to reorganize so that all the reds are together and all the blues are together.

The reason I used the example of red and blue socks is because its exaggerated.  You can imagine how unorganized my house looks after moving, if I cannot organize something like blue versus red.  In reality, its a little more subtle than that– its beige versus white or kids bowls mixed in with kids plates or its papers that belong in one category versus another.  So its not just my house, its my writing and its my organization of my day and its organization of my projects and on and on.

And the irony of it is, is the less distraction I have, the more I can focus and be efficient and think better and more efficiently. But my injury means that I have a lot of distraction going on in my brain that I don’t yet have the skills to filter or the procedures to filter out.

And when I experience neuroplasticity, I suddenly can see how to filter things into better categories.  Since I have better categories, I can do things more efficiently and because my brain can do things more efficiently I both have more energy to use toward problem solving and I can solve more problems (because my brain has more energy to solve problems.)   Both the energy and the increased abilities bring a sense of accomplishment and a kind euphoria.

(And, not to mention, I don’t have to spend time employing the compensation strategy of going back and doing the work again,  I am more likely to get the categories right the first time, and thus save time doing the task.  That is if I am aware enough that I can drop the compensatory strategy. More on this later too.)

And another more on this, later catagory too.   I need to add briefly that the neuroplasticity isn’t all good.  It comes with “costs” that I have to be willing to tolerate in order to embrace my brain’s ability to change  and get the benefits of the neuroplasticity .

There is a down side of the sense of accomplishment and euphoria of the neuroplasticity.   It can be depressing to grasp just how poorly my brain was functioning before.  So I have to be able to take that in without judgement.  And I have to be able to let myself cry and grieve and feel the losses that I now suddenly am aware of that I wasn’t aware of before the neuroplasticity stage kicked in.   Sometimes its too much to take in, so I have to take it in slowly.  Sometimes when I experience the neuroplasticity and the new “seeing” it makes me feel vulnerable and unsafe because I am suddenly aware of how others could take advantage of my deficits or in some cases, how I actually was taken advantage of with my deficits.   Or it makes me realize places where I couldn’t stand up for myself as a result of the fact that I didn’t have the brain skills to do it, and I have to be easy on myself, and know that I did the best I could then, and that in the future, with increased skills I can do it better now.

Do you know when you are experiencing neuroplasticity?

Can you describe it?  Or begin to describe it?

Does it make you feel euphoric and optimistic?

Or do you feel scared or frustrated?

Do you feel losses with it?

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Making the most of technology while my brain changes

This has been a crazy good and crazy bad week for me.

I both want to write about it, but haven’t processed it because the wide swings that I have expereinced this week are just hard for me to integrate.  I am very aware of how slowed my processing is this week.  Even slower than its been with this setback.

And as I reflected about my experiences this week in order to write my blog post, I realized that part of what’s going on is that visually I am trying to learn how to organize increased “space”.

I have talked about the reorganization and neuroplasticity that I am having right now in my last posts.

It feels like my brain can now support taking in more space in my peripheral vision.

 

So it is taking in more space visually.

But my brain has to learn how to integrate that space.

And so the wide swings that I have experienced this week and that I cannot integrate well yet, are consistent with what’s going on in my brain, also.

I am taking in more, yet my brain has difficulty prioritizing.   And so my brain is trying to take in more which means to me that it is trying to prioritize more information when it cannot prioritize information well.

Prioritizing what to take in and what not to take in is part of executive functioning skills and its something my brain does quite poorly post-injury as compared to pre-injury when I wasn’t even aware that prioritizing information to take in and what to ignore was part of what my brain did!

Since I am having a harder time dealing with the big screen of my computer this week, I am going to stop writing and post-this and then come back to it later.

I am limiting my computer use in general to get cognitive rest.   When I need to use the computer, I am using my iphone which is some easier than the big screen right now.

I don’t know how to post my blog on my iphone yet, and I know that trying to learn new things right now is ill-advised for me when my brain is undertaking so much change.  It takes too much concentration and too much energy.  I need to use the energy to help my brain change right now.

I have so much to say but the computer technology is an even larger limitation for me in saying it right now!

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Cultivating Neuroplasticity

I having been writing about the big setback that I have had following a dentist appointment to fit a new mouthguard and what its been like to go through this setback with the increased awareness and insights that I have developed from my previous recovery journey.

I am clearly in the final stage and I am experiencing the neuroplasticity that I hoped I would get coming out of this.  Goind through what I am going through is “not pretty”– in that my brain is making mistakes and going through some growth pains right now.   But its exciting.   I know beyond a doubt (from my previous experiences with neuroplasticity) that I am going to come out of this better than I was before June 2 when this setback started.

My uncertainty about the outcome of all this is gone!  Yahoo.   I still don’t know when this final stage will be done, but my job right now is to cultivate, entice, do everything I can to allow my brain to change in the ways that it wants to.  I want to get the most benefit I can from this neuroplasticity phase that is finally happening for me.

In other words I need to get out of the way of my brain’s ability to change for the better!

That may sound a little dispassionate.  Who ever heard of getting out of one’s brain’s way before (!)

I have learned from my years of recovery to separate myself from my brain and what my brain is doing.

Before my injury, my brain was who I was.  My brain could support me being a Phd Economist and that was my identity.  I was what I did.

After my injury, I did not have the skills to do my job anymore.  I didn’t know who I was because it felt like I was no longer me.

Having learned a lot of the tough lessons of recovery, I know that the more I see my brain as separate from me, the better I can be dispassionate about what my brain is doing, and the better I can not take what my brain is doing personally!

And not taking my brain personally, means that  in this case that I can step out of the way and let things happen for my brain, so that I will continue to experience long term recovery.

Here are three ways that I know that I am in a period of neuroplasticity, right now:

1) I can feel my brain reorganizing.  What that means is that I suddenly start seeing all of the disorganization that I could not see around me before.  For example, I will look at my clothes drawer, or any drawer, which has previously been as well organized as I could get it.  Suddenly, looking at the drawer I can see a better organization.  I can also see that my shirt drawer shouldn’t have pants in it, for example, or that like shirts can go together, so that I can find them easier.   Since this is happening all over my house, it feels good to start taking advantage of the better organization that my brain will allow.

2) I get a burst of energy.  I assume that this comes from the fact that I can see how to reorganize things that were previously poorly organized despite my best efforts.   It suddenly takes less energy to do a task because all the steps to do it are now obvious to me, suddenly.  Because I can do things more efficiently, the energy I have can go farther in my day.   The increased energy makes me want to take on more things that I am noticing should be organized differently.  (In fact, I have to work hard not to overdo it and get too exhausted from this surge of energy that I get.)

3) My vision is inconsistent, along with reorganization and the energy burst.  I can see well far away with my current level of correction for my contact lenses.  But my near vision isn’t good and  my vision is not very stable. It is changing.  But, that is okay.  I am learning how to integrate more space, and it is what it is.  I want to use the brain injury strategy of “riding this out”.  This means, tolerate it until its over.  (And I am limiting my driving in order to keep everyone safe. I am only driving when I need to and at low speeds to familiar places nearby that I cannot walk to.)

Dr Franke, OD, my vision doctor extraordinaire told me what to expect with a transition and it is indeed happening.

Have you experienced neuroplasticity?

What do you experience when you are experiencing neuroplasticity?

How do you know when its happening?

 

 

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