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People seldom improve when they have no other model but themselves to copy - Oliver Goldsmith

Empowerment from Role Models

February 7, 2015February 7, 2015 aforrest Leave a comment

One of the many things that I found empowering working with my Team AxIS and my advisor, Joseph O’Connor was that they used the computer so, well, easily.

I realize the descriptor easily may sound like a funny use of terms. Of course designers, developers and usability experts would use the computer easily!

And, especially when compared to my computer use.

Because my team knew how to use the computer to create the website that we talked about, I could watch them do things in a short period of time. What they were able to do was so far beyond my abilities. I could literally see things that we talked about taking shape before my eyes. Sometimes it wasn’t quite that fast.

However, my team was in India, and their day was my night.

So sometimes they would work on the site while I was sleeping.

And so I would wake up and start my day and when I looked at the computer, there would be an email to open.

And the email would show me suggestions that my team had for how to make the ideas we talked about the night before take shape.

Some days it seemed instantaneously.

Some days it might take longer. Often I was just getting used to an idea when it was already mocked up.

Just to say something I have learned about myself and my decisions is that I definitely have delayed processing post-injury and so it often takes me awhile to get used to an idea. I may have had slower decision-making prior to my injury, its hard to know. What I do know is that my decision-making is slower post-injury and so getting used to that and working around that is part of my “new normal”.

Back to my website and my team. From my point of view, my new website began to take shape very quickly.

To me part of the empowerment that I felt from participating in the Knowbility Open Air Contest, was that watching my team gave me hope that one day I will use the computer much more easily and much faster like I could see that they do!

I was an early adopter of computer technology before my injury and I know the benefits that the appropriate use of technology could give me to enhancing my productivity and quality of life.

However, with my slowed learning following my injury and the difficulties I have had with the distractions of the computer as well as the trade-off I face in terms of energy loss from concentrating in front of a screen, and countless other issues that I don’t have a grasp on yet, I have had a difficult time with experiencing gains from the computer.

Watching what my team could do not only motivated me and gave me hope just by seeing what they could do.

They also broke down for me new learning. I would get an email saying these are the steps you need to talk to do this. In others words, they gave me procedural information that I could follow.

First you do this, then you do that.

And I can follow simple instructions that tell me what to do and when.

Often I cannot break things down for myself.

But if the instructions are good and precise (and do not skip any steps), then I can follow them.

And if I cannot follow them the first time, I can try again and again until I learn them.

And I feel so empowered when I am successful at doing step one and then step two and then step three.

When I have hope because I can see where others are able to do and when I have a complete step by step approach, I can use the computer (or mobile phone or ipad). And I can experience benefits of technology. And I feel empowered.

When technology disempowers me, it disempowers me much more than it disempowers someone without my cognitive issues.

When I cannot learn how to do something new on the computer, either because their are implied steps or there is an assumption of knowledge that I do not have, or because I am unable to break down the steps myself, I experience frustration, just like others.

What may not be like others however is that I am conscious that I am dealing with a lot of increased frustration in just going about the simple tasks of my day. And in order to get through the day, I am already pursuing strategies to keep my daily frustrations from getting me down or getting me depressed.

So going on the computer to help me, and ending up with increased frustration, is often a risk that I cannot afford to take in my day, if I am already having a tougher time in my day than I am used to.

Or if my brain is not having a good day. In other words, if my brain is having a harder time performing simple tasks that I normally can do.

What my team did for me was by help me by pass much of the increased frustration that working on the computer can do for me.

They were motivated to help me, and they wanted me to succeed.

They broke it down for me.

Step one is this.

Step two is that.

And they modeled for me where I want to be one day.

And when I couldn’t do a task they suggested, they broke it down differently for me.

Together we found a way for me to increase my appropriate usage of the computer.

Everyone needs models outside of themselves to inspire them and help them with the steps they need to go where they would like to go.

I needed them before my injury!

After my injury, I need them more.

Thank you Team Axis and Joseph O’Connor and to all those at Knowbility.

Thank you, thank you!

2015

January 25, 2015January 27, 2015 aforrest 1 Comment

Happy New Year!

I am learning how to use my new, more accessible, website.

I asked my husband to teach me how to post pictures. I needed reminding about where to find pictures, and he looked and found 3 pictures about the new year.

Eventually, I choose this picture.

I liked the the technological aspect of the New Year. Based on the end of last year, I think I will be learning about how to increase my use of technology this year. Working with my very knowledgeable team during the Knowbility Open Air Contest taught me many new things about accessibility and about my website. It will take me practice to learn some of the new skills such as writing more accessible posts, even now that I have more of an idea of the resources that can help me with that.

The other reason I choose it was that the New Year has started in a rather blurry fashion for me, once I thought about it. I liked that the 2015 in this picture is not sharp and distinct but blurry and less distinct.

You see, I ended 2014 feeling very empowered by the work on my website that my team and adviser and my husband and I did. My entire team moved my website forward and helped me in ways that I did not even imagine they could, prior to the contest.

Perhaps anyone working on a website would benefit from others teaching them better ways to express themselves on their website and reflecting back to them suggestions for improvement.

For me with a brain injury, learning to pay attention to others feedback and incorporate it into my world view has been an essential part of the skills I have learned in rehabilitation and outside rehabilitation that have helped me recover as far as I have.

So having my entire team reflect back how they saw my mission and my logo and my site was very powerful for me. The most meaningful thing that I can say is that I started the contest with a logo of a brain with a band aid on it and ended the contest with a logo of a healthy, growing brain. I felt empowered in many ways, but most importantly I no longer identified with a brain with a band aid on it and instead I realized that I felt a sense of integration and wholeness, such that I could identify with a healthy brain. That is what my journey has been. And once a integrated and whole brain was reflected back to me, it was obvious to me that that was the way I felt about my journey and my brain, now.

Wow!

I felt incredibly empowered!

And then, the blurry part of 2015 that is in the picture came next.

Right at the end of December, my husband got the flu. We had a nice New Years Day with friends and family, and then sickness and flu tore through our family–low energy, congestion, fevers, and a lot of work compensating and getting each other well.

The lightest way I can it is that we have been practicing another set of skills this New Year. We have been practicing resilience skills.

Some of my medical resilience skills are:

–focusing on trying to get well as quickly as possible,

–focusing on keeping things from getting worse once you are sick,

–recognizing that “this to shall pass” and getting as much rest as one needs,

–being easy on oneself while one is sick;

–in other words, not try to push oneself;

–re-arranging any activities and plans that are not critical (bill-paying is critical);

–my cognition was much lower with my congestion so re-arranging activities was critical for me.

I wrote a draft blog the second week of January, and realized I should postpone working on my blog until I had more cognition and more perspective.

So I am inching my way into starting 2015.

But my sense of empowerment from participating in the Knowbility contest has kept my mood high despite not feeling well and the many tasks helping my family while they weren’t feeling well. And helped me cope with the many rainy and cold days that Winter has brought (unusually many for Central Texas).

And when my son came down with strep throat on Friday, I realized that January may be a much tougher month than I thought.

But I still think 2015 will be a good year! And a year of increased new learning of technology.

And now I will go learn more about how to write text that is more accessible with subheads and how to edit the alt text for the picture now that I have written my blog. One step at a time.

The Value of Revealing My Deficits

December 9, 2014December 22, 2014 aforrest 1 Comment

I attended the Knowbility Contest “Pit Rally” last Thursday to ask questions about the contest to the judges.

(If you haven’t seen my previous posts about the Knowbility Contest to improve website accessbility for non-profit organizations that I have entered my website in, please look at them. (I haven’t yet figured out a better way to reference them, but its on my list for things to cognitive challenges to learn about how to address!))

Several others from the accessibility technology community were there.

I got into a conversation with a woman named Glenda Sims who currently works for a company called Deque Systems.
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Happy Thanksgiving

November 26, 2014December 22, 2014 aforrest Leave a comment

I started writing more about automaticity last week. But, I am not ready to post it, yet.

So my post today is Happy Thanksgiving!

I love Thanksgiving.

I love the food and the time to enjoy a good meal together with family and friends.

This year, we are going out for Thanksgiving lunch.

I plan to cook pumpkin pie later in the weekend.

I was reminded about my post last year about Thanksgiving when I looked for my pumpkin pie recipe.

There was so much going on last year for me that I forgot to remember to look for the easy pumpkin pie recipe that I make.

This year, I went straight to my recipe book and found the easy pumpkin pie recipe with ginger snap crust.

Yahoo!

Its been a tough year, but I am doing much better now.

And, as far as Thanksgiving goes right now, it is all good!

I did it!

November 8, 2014December 22, 2014 aforrest Leave a comment

On Monday when I walked, I realized how glad I was that I had developed some awareness last week about my vision and integration, how my brain is changing right now and how to help my brain change during this transition through my vision exercises and walking.

And in reflecting about my increased awareness, I realized that I had more challenges on my plate this week then had even recognized that I had the week before.

It wasn’t just that I had more tasks to take on as a daughter, but also I needed to figure out how to increase my communication with my siblings and brother and sister-in-law in our collective tasks to help each other work together to help my father.
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New and Better Website Coming!

October 18, 2014December 22, 2014 aforrest Leave a comment

Friday I got signed up for the Open Air Rally at Knowbility an organization here in Austin that promotes accessible design.

In the next couple of months, I will work with a group of experts on accessibility issues including web designers, programmers and marketers to improve my website. I will be matched with a team of experts who will volunteer their time to help me develop my message and improve the accessibility of my website so that people with all kinds of disabilities as well as people with out disabilities can read it better.

At the end of the process, there will be a competition to see who’s website is the best with respect to a set list of accessibility criteria.

I am really excited for 3 reasons:

1) I know that I wouldn’t have been able to read my current website until years after my injury. I have visual and cognitive and processing deficits. I want others with my issues, and with other issues, to be able to read my website, if they want to.

2) One of the people who founded the Open Air Rally with Sharron Rush at Knowbility was Dr John Slatin. Dr Slatin led what was then-called The Office of Technology and Learning at the University of Texas. Dr Slatin found a place in his office for me after I finished speech and language therapy rehabilitation at St David’s Hospital. He was a tremendous mentor of mine. He provided the vision and direction for my post-injury speaking engagements. He helped me understand the need for more and better information on cognitive deficits from his point of view as someone interested in accessibility, learning and technology.

My first post-injury speech was to John’s undergraduate class on improving the accessibility of the web. I spoke about my cognitive deficits at that time, and the difficulties I had with using the computer and what had helped. That speech was the first of many on what my cognitive issues were, how they were changing and how the computer could help me. After the speech, John told me that he could see my economics training in my descriptions of my brain. It made me so happy to know that my economics was still in my brain somewhere and that I could continue to develop that skill now that I knew it was there! I wanted so desperately to be reconnected with my training in economics which I loved.

When I knew John, he had had to learn to compensate for adult-onset blindness and he worked hard to increase accessibility for UT students. Sadly John passed away from Leukemia after we left Austin for Washington, DC.

For me, connecting with Knowbility and entering the Open Air Rally are steps in honoring how important John’s mentoring has been in my life. I know it would mean alot to John, if he were still alive and could see how things he began years ago are helping me now, and how the work will help others with cognitive and visual disabilities.

3) The mission for my blog has evolved and changed since I started writing it over a year ago. My original idea was to develop a community, but its primary focus has evolved to be mostly the blog. Because the mission has changed, the current website is not the best for my mission. In technical terms, the User Experience (UX) design is bad for everyone. Bad UX design is frustrating and bad for people without disabilities, and can be exponentially more frustrating for people with disabilities. I am glad we can finally take steps to ameliorate the frustration that my current website currently creates. We had to start somewhere, and I am ready to take the next step, with such dedicated help.

And lastly, I am hoping I will learn a lot compensatory strategies for my computer use in the process of working on improving my website with people who are knowledgeable about accessibility issues.

Here’s the link about the Open Air Competition through Knowbility:

http://www.knowbility.org/v/open-air/

Neuroplasticity and Resilience

October 9, 2014December 22, 2014 aforrest Leave a comment

In the last couple of posts, I have been writing about my experience of neuroplasticity. I am going to emphasize that I am writing about it, at an experiential level.

In other words, I am aware that my experience is anecdotal evidence for scientists and social scientists because to my knowledge, neuroplasticity has not been studied in a systematic way for as long as I have been living post-injury. (According to Dr Allen Brown at the Mayo Clinic. He presented the evidence from studies that have been done at the Mayo Clinic on Neuroplasticity after brain injury at the Brain Injury Awareness Day 2011 panel that he and I participated on as well as many other government, military officials and the wife of a wounded warrior.)

I am particularly interested in how vision therapy increases neuroplasticity. I got to vision therapy relatively quickly after my concussion/brain injury because I couldn’t process what I was reading and because I was not getting help for this issue from my primary care doctor or my neurologist. I wanted to get back to work and, even with my injury (and little overall self-awareness about its consequences or sequalae), I knew I had to be able to read.

In response to my last two posts about neuroplasticity I am feeling following my 3 1/2 month unexpected setback this summer, I reached out to Sue Barry, a neurobioologist at Mt Holyoke for information about what’s actually happening in my brain. I wanted to understand what’s happening.

Now I realize that there is value to me (and others) in trying to map my experience with what some scientists understand is happening in my brain.

In response to my question to Sue Barry PhD about the role of vision therapy and neuroplasticity, she wrote:

“Vision therapy changes the way we process visual information, and this can have dramatic effects on how well we function as both Anne and I have discovered. In chapter 6 of Fixing My Gaze, I describe some possible ways that vision therapy techniques alter synaptic connections in the visual cortex. In addition, our mental outlook and mood alters the release of neuromodulators onto cortical cells and synapses from certain regions of the brainstem and basal forebrain. These neuromodulators then alter the strength of existing synapses. I cover some of this in the last chapter of Fixing My Gaze. Thus, mental outlook and mood have powerful effects of brain function and plasticity.” (By email, October 28, 2014)

So I have been reading and and re-reading her book, Fixing My Gaze: A Scientist’s Journey into Seeing in Three Dimensions by Susan R Barry with a foreword by Oliver Sacks. (It was copyrighted in 2009 by Basic Books in New York, USA)

And then this week, I went to an amazing panel at SXSW-Eco on “Networked Resiliency and Sustainability”. It’s a long story about how I got to the panel, but the short answer is that much of my thinking about my brain and recovery is influenced by the research and work that I did on the broad topic of sustainability that I did at the Environmental Law Institute pre-injury as a senior environmental economist. Post-injury, to the extent and when my cogntive function allows me to think abstractly, I try to apply what I learned about sustainability and the economy to running my everyday life as an individual. I learned alot about resilience when I finally got to rehabilitation after my brain injury, although it was not called that. So I was attracted to the panel title “Networked Resilience and Sustainability” and wondered if it would apply to how I think about my post-injury medical problems.

It did. It was fascinating and stimulating to see how the work on sustainability has been continued by others after the end of my career (due to the difficulties I had getting comprehensive post-injury treatment and possibly by the injury itself).

It was fascinating and stimulating to see the societal context for the work on sustainability that is being done around the world in 2014.

And it was fascinating to see how what I have learned about resilience and building networks to support optimal recovery from my injury is being done by cities to support optimal recovery after weather shocks such as hurricanes and tornadoes and other extreme weather incidents that we now understand the societal benefits of planning for on many different levels.

After listening to the talk, I understood that perhaps some of the euphoria I am attributing to neuroplasticity is really from the resilience I feel after getting past a setback that I know I am lucky to have cut as short as I did.

So I wondered how much of what I am describing as how I feel when I feel neuroplasticity is really how I feel when I feel resilience. Probably some of both!

A week of possibilities

October 4, 2014December 22, 2014 aforrest Leave a comment

I have had an amazingly clear and instructive and stimulating and exciting week!

Like I described in my blog post last week, I brain feels “clear as a bell.”

Given all that I have gone through this summer with my setback where my thinking was so confused and so disorganized and had to work so much harder than normal to try to function, having my brain feel “clear as a bell: feels great.

The vignette that I will always remember about this summer was when I unawarely blended a metal spoon in my blender.

I think I wrote about this blender incident in an earlier blog post. And, I am going to write it again, for the emphasis. I had noticed that I had put the spoon with peanut butter on it in the blender and told myself to remember to take it out before I turned the blender on.

And then I did not remember the caution to myself because my attention was so terrible this summer.

Instead of remembering to take the spoon out, I put the top on the blender which meant I could no longer see the spoon in the blender.

And then I turned the blender on.

And when I couldn’t process the information that I was getting from the sound of the metal blender trying to blend with the metal spoon, I turned up the blender speed thinking it was ice that needed a higher speed to blend.

Ah, me!

And now, my brain is processing quite well again and my thinking feels “clear as a bell”.

You may imagine that I feel like I can do anything!

My week has also been instructive because the clearness of my thinking is reminding me of my brain’s ability to change (in response to my eye exercises and my hard work to help it get better) means to me at an experiential level. I feel clear.

And I can even feel connections being made inside my head that I was not able to make previously. And that feels great!

Its been an instructive week because I got knowledgeable feedback from Maria Romanas MD, Larry Shutz PhD and Sue Barry PhD about my last blog post and the conversation that Maria and I have about my brain before I wrote the post. Their feedback about the mechanics of what is actually happening in my brain right now was tremendously helpful. It made me realize that I am describing the changes in my brain but that I don’t really understand the mechanics of the neuro plasticity very well other than I know its happening to me.

It was exciting to get the feedback from an MD and two PhDs–people who have studied this issue and are very knowledgeable about it –on what’s physically happening for me. Sue Barry, a neurobiolgist helped me understand that the vision therapy (and potentially other things I am doing) are strengthening the connections in my neural pathways.

I hope to re-post the input that I have received from these three because the discussion with them on neuroplasticity this week has been a fascinating to me. I need to ask for permission from them first or to ask them to post their comments directly on my blog.

You see, as an economist, I have been trained to think about how an economy changes and post-injury, I have begun trying to apply my training to try to characterize who my brain changes. Linking the changes that I can describe to the actual physical part of the brain is another step. With the feedback this week, I have learned that I have a lot to learn about neuroplasticity, what it is and what it is not, before I can begin to make that step for myself. The feedback sharpens for me some increased awareness of what I don’t understand about neuroplasticity. Improving my understanding of neuroplasticity will help me refine my thinking and help me match my experiences to the science better. Yahoo!

So I read the medical definition of neuroplasticity this week for what seemed like the first time and I looked for the research that the Mayo Clinic has done on studying neuroplasticity after brain injury to find the definitions that they used in their study. (I will post these definitions on a latter post and I must work harder to find the Mayo work.) Exciting stuff!

There was another opportunity this week, that I want to describe because it was so meaningful and poignant for me.

I volunteered to read to my 5 year old son’s kindergarten class this week.

As I prepared to go to his school to read, I realized how far I had come that I could read to his class.

One of the symptoms of my brain injury was that I had difficulty processing what I read. My eyes looked at the words, but I did not know what I had read–I couldn’t take it in and trying to do this was exhausting for me.

I first became aware that I couldn’t read when trying to read Time Magazine at the Neurologist’s office. However, this symptom was not understood, or treated, or even recognized as a problem by my medical doctors. I was lucky in that it was diagnosed (and hence validated) by a vision therapy doctor, Dr Franke. He treated me by giving me eye exercises, diagnosing prism glasses for me temporarily, and helping me develop compensatory strategies.

In preparing to read to 5 year olds this week, I recalled a difficult moment for me early on when a friend’s friend had asked me to read to her 2 year old while she got dinner started. Books written for two year olds are about as simple reading as you can get. So I thought I could read to my friend’s two year old.

However, it was the end of the day, and I was tired, and after reading two or three pages, I realized that I just couldn’t read the book to my friend’s 2 year old.

It was difficult to come to terms with that for myself. But I had no choice. I couldn’t do it. I had to tell my friend, I couldn’t do it. It brought me to tears.

And years later, look at me now! I am the mom that is reading to my son’s class. What a joy!

Neuroplasticity = Hope

September 21, 2014December 22, 2014 aforrest 1 Comment

Earlier this week, I tried to write about the neuroplasticity I am going through. I tried to write about what neuroplasticity means to me. And, why I can tolerate my brain changing right now which is both good and difficult.

My words were hard for even me to understand. And my writing was awkward, at best.

So I stopped writing, saved the draft, and waited for inspiration.

Friday, I went to the Texas Brain Injury Alliance Conference in a suburb outside of Austin.

During the lunch time session, I listened to a talk by Maegan Morrow, a music therapist at TIRR Hospital in Houston. As a music therapist, she is often able to help people who have difficulty finding speech or who cannot talk find a way to talk through music. So she is a miracle maker for some.

During her talk, she let the following words roll off her tongue.

Neuroplasticity = Hope.

When she said it, I knew she had put it together for me. I knew that that she had just given me the title for my blog post this week.

I also knew that once I started with that title, I would be able to write about what neuroplasticity means to me, in a way that wasn’t awkward!

When I talked with Maegan afterwards, she told me that she had never quite put neuroplasticity and hope together that way before either.

So it was a first for her, and it was exactly the phrasing that I needed to hear.

Neuroplasticity = Hope.

Neuroplasticity is the hope that my brain will change for the better than keeps me going.

I have experienced neuroplasticity. I know my brain can change.

And I know my brain can change long after 2 years, which is when my doctors told me that my brain would not be able to change any longer.

My brain has been changing for going on 17 years now post-injury.

So for me, neuroplasticity = Hope.

When I experience neuroplasticity, it brings me hope.

It also brings me hope when I am not yet experiencing neuroplasticity. And, that hope helps keep me going. The hope fuels my optimism.

It brings me hope that I will continue to experience periods of neuroplasticity in the future. In other words, that my brain will get better and better. Not just better once, but better and better.

And better and better is a great positive cycle to have in one’s life, for anyone.

And, especially when I have a lot of plans of what I would like to accomplish to help others with brain injury learn get the help they need to live meaningful and full lives.

A Better Strategy for the Home Stretch

August 23, 2014December 22, 2014 aforrest Leave a comment

The thing about being conscious about figuring out a “plan for success” for getting through this final stage of my setback is that I can revise my first thoughts on a plan once I start working on my plan.

This is true any time that one is conscious about figuring out strategy.

The first thoughts are often not the ones that are the best!

That seems obvious now that I write it.

However, it was not obvious to me when I wrote my last post.

It took some reflection on my part this week for me to get to the place that it is obvious.

In the last blog post I wrote about what I imagine my strategy for the home stretch of this setback ought to be. As I wrote the post, I remembered that my strategy had to include “holding back my inner over achiever” because I have come to learn that pushing hard to the finish line doesn’t work for me after my brain injury.

This week I reflected on what the rest of my strategy ought to be.

As I thought about what I had written in my post, it struck me that I was still trying to do things like the old me did things.

It struck me that just imaging the race as a horse race was my old me.

And, I laughed and laughed gently with myself when I realized that my imagination was from a place in my old me.

I am not my old me!

They say that old habit die hard.

Certainly this old habit of imaging strategies as if I were the old me, is still with me.

How funny. After 17 years of recovery from my concussion, no less!

And then I reminded myself that the new me is the turtle in the race with the hare from the Aesop fables. In the fable, the hare challenges the turtle to the race and the turtle wins.

“Slow and steady wins the race” is the motto for the turtle in that race.

I have learned that the new me does better trying to emulate the turtle (and not the hare).

That means that I am already holding back “my inner over-achiever” during the race and the home stretch should be no different.

So what are other components for a better strategy for the Home Stretch.

(#1 Remember, I am a turtle in the race.

Keep holding back my inner over achiever because I cannot push throw this)

#2 Build my support network for the last stretch (if its not already built).

A friend called yesterday and at the end of the call, she said, add me to the list of people to call on for help.

#3 Prioritize safety first.

Don’t do things that if they don’t go as expected, may make things worse. Right now I am having some changes in my depth perception. So I am not driving until it is safe for me to drive. This means finding other drivers and changing some of my sons commitments. Its not easy to change this routine, but if I am an unsafe driver right now, then I need to prioritize safety first for me and my family.

#4 Be gentle with myself.

#5 Slow down (further to incorporate the whole strategy)!

Since I am not processing information well and making more mistakes than usual, in addition to imaging being the turtle in the race, I need to go at a turtle pace with my support network in place and prioritizes safety and is gentle for me and is slow enough that each step is the best step I can take be it forward or sometimes backward to go forward.

What are strategies that you use to build your support network around a setback?

How do they work for you?

How do you manage slowing down and finding the right pace for you?

What is the hardest thing about slowing down and holding back your inner over achiever?

Empowerment from Role Models

2015

The Value of Revealing My Deficits

Happy Thanksgiving

I did it!

New and Better Website Coming!

Neuroplasticity and Resilience

A week of possibilities

Neuroplasticity = Hope

A Better Strategy for the Home Stretch

A Plastic Brain, Awareness Hope Advocacy

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