Inspiration — Part 2

aforrest Leave a comment

Before my injury, I often found inspiration in my life through sports.

I am a Duke Blue Devils Fan.  And I love it when my team inspires me.   I played Basketball in High School and loved it.

But it wasn’t until I moved to North Carolina to attend graduate school in economics at Duke that I really became an avid college basketball fan.   The rivalries in ACC Basketball take the sport to a whole new level.   And I realized that following the team provided good everyday conversation with those around me.   From my perspective, the choice was either to follow basketball, or not be able to talk to those around me about anything but economics during basketball.  I chose to follow basketball.

And the biggest moment of inspiration was watching the Blue Devils journey to win their National Championship in 1991.

To understand why the 1991 season was so inspiring, you would need to know The Blue Devils had lost by 30 points to UNLV (University of Nevada at Las Vegas) in the final game in 1990.

I remember sitting on the bleachers at Gregory Gym with other students cheering for Duke to make a come-back.  Duke trailed UNLV almost the entire game.   We were cheering and thinking — if our team could just get within 20 points, this could be a game!   That is a hard cheer to have to be making.

So knowing that my team had lost big in a big game on national tv in 1990 made watching their win over UNLV  in the semi-final game thrilling the next year.

I watched that game in Gregory gym also and it was a hard fought game.  In the end, Duke was victorious.

I went to Gregory Gym to watch the game in order to have the memory of watching the team win replace the memory of the loss.  Their win is indeed what I remember.

Then, they went on to win the National Championship in the final game over Michigan.

Watching the team play on tv now, always brings back the great memory of watching  their ultimate triumph in the 1991 season.   It inspires me.

Another moment of inspiration, before my injury,  that I carry with me is an experience of going to the Fine Arts Museum in Boston over the Thanksgiving day weekend while visiting my aunt and uncle.    I was looking carefully at a painting I liked in a back room, off the beaten track.   And I realized that Steven Wright was looking at the painting next to me.   I had seen Steven Wright perform his comedy at Duke and had met him through his then-manager Tom Hutchinson, a friend of a friend.

Steven told me that in order to spur his creativity and to keep himself inspired, he had to get away from his daytime routine and he would visit museums or do something different.   I had never thought about doing something like that to inspire my work.

Later,  a couple of years after my accident when I was still trying to keep my life from going from bad to worse, I started the habit of planning to go to the Smithsonian museum in Washington DC where I lived for an hour of month to inspire myself through art.

Thank you Steven Wright for teaching me such a great habit — it was one of many things that kept me going!

I have been really challenged by both my injury and by the difficulty that I had finding and getting to all the appropriate rehabilitation I needed and I am grateful to all those who helped me find my way including many great health professionals and doctors as well as friends and family.

 

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Finding inspiration

aforrest Leave a comment

I have had an enormously frustrating ten days for a number of reasons.

So finding tremendous inspiration in a phone call with another survivor on Monday has helped me focus on the inspiration (rather than the frustration).   I needed that!

Because of my injury, I deal with a lot of frustration on a daily basis.  I continue to have many problem solving skills and difficulties with new learning, getting things in sequence and difficulties with organization in my brain and in my environment, to name a few.  Technology often stands in my way rather than helps me.   I routinely have to compensate around my frustrations and I have to work at not letting the frustration I experience get to me.   Sometimes I am more successful than others.

When I have a bad week, my problem solving skills decline.    And thus my frustration can increase, sometimes to unmanageable levels.

And all that can happen with no help from events outside of me.   When events outside my control create increased frustration for me, I have to work even harder to stay as calm and even-keeled as I can.  I learned in formal outpatient rehabilitation that my problem-solving is actually better when I am calm, so finding calm and staying even-keeled behooves me.

To make the frustration I have been dealing with in the past 10 days (from outside) more concrete, I am going to share some of  the details.

My cell phone service has been horrible for the last two weeks.   My service has been dropping calls like crazy.  And, I have horrible reception right now, even when the calls aren’t being dropped.

At first, I compensated by stopping making calls.  But then, I felt like a prisoner to my phone.    When I started using the phone again, I would start the call by telling the other person that my reception was terrible and to please bear with me, as there was nothing I could do about it right now.

Alittle background here about the importance of my phone to me.     To solve problems, I need to use my phone to call others for support and friendship and to get suggestions from others that I cannot think of by myself. I need to call repair people for problems in my home.   And I need to be able to understand what others say, which is sometimes difficult for me with clear reception because of the lingering subtleties of my injury.   Understanding others is much harder when the phone reception is bad or is cutting in and out.  Plus having to redial the phone and figure out where I was in the process, is just trying to my patience.

I called my cell phone service  7 days ago and complained and listened to them for 30 minutes.   My husband had been complaining for me before then.  But, I realized I really needed to do it for myself because the bad service was so annoying to me that I knew it would make me feel better to talk with them directly.

After my call with them, I lost my voice to larynigitis.  I couldn’t talk for 3 days!   So things got worse before they got better.

I could go on and on about my increased frustrations during the time I couldn’t talk.     However, I really want to talk about the solution.

Once I got my voice back, I called Mark Palmer www.realistichope.com for a conversation we had scheduled before I lost my voice.   I had been introduced to Mark through my volunteer work at the Brain Injury Association of America in the Washington DC area years ago.   I wanted to reconnect with him this week as he had presented the first Webinair by a survivor through a new Webinair series hosted by the Brain Injury Association of America.    The series is funded by the Butch Alterman Fund and seeks to address top issues of survivors and their family members.

I had missed the Webinair when it aired in December and I hope to watch it when its posted electronically, soon.    The title was Realistic Hope.    I wanted to talk with Mark about how it went for him and what he learned from doing it.

What was the inspiration that Mark gave me in our conversation?

First, he helped me work around my technology issues for the conversation!   Mark made his career in technology after a severe brain injury changed his life in his early teens.

So he patiently advised me as to how to use my skype connection so that we could avoid the phone issues.    He was so patient, and gave me time to find my skype password and walk me through the skype website which came up on a screen where I couldn’t find a place to type in his skype information.  His patience alone was tremendous and the exact mix of attention and space that I needed to problem-solve.

Together (and with both of us showing each other tremendous patience) we kept looking for a different compensation when my first attempt on my computer didn’t work.   Since he was on an Apple machine, he couldn’t walk me through what my machine was showing.     I realized that I also had an apple machine, an Ipad I am learning to use, so when Plan A with my computer  didn’t work, we moved to Plan B on the Ipad.   And all of a sudden, we were connected!!!!  Bingo.

I want to say more about Mark’s work after I have seen his Webinair.

But for now, I want to tell you what has stayed with me the most from his conversation:

1) Mark thinks in a very holistic way about problems.  It was inspiring listening to his thinking.  When you think outside the box, you come to conclusions that solve problems in a bigger picture way.

2) Mark’s outlook is amazing.    Mark said that he’s been 30 years with out seizures.  He said that if the people who helped and supported him had given up on helping him to be seizure-free during the 20 years it took for him to be seizure-free, they would have robbed him of those 30 years.    That is quite an outlook!

3) Mark’s story about the way he looks at his journey to be seizure-free reminded me of the gift that finally being able to drive after 15 years of hard work on re-developing my driving skills gives me.   Many people supported me with a lot of baby steps that I had to master in order to be able to drive again.   And if they hadn’t done that, I would not be experiencing that gift everyday when I drive my son to school or run errands.

Mark put me back in touch with a feeling that I have when I am in the inspired place–that I have had a lot of recovery from my brain injury.

And one of the gifts of that recovery, when I remember it, is that if I can get better from brain injury, I can do anything!  I have been greatly challenged, and I have risen to the occasion.  That is a great feeling.

The day after I talked with Mark, I called my cell phone carrier again.

This time, I successfully argued for a cell phone extender — a piece of technology that will improve my cell phone reception in my house while towers around me are upgraded.   Thank you Mark!

To all the survivors who have modeled for me better ways of doing things and who have inspired me with their actions, thanks a million!

 

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Noticing the energy and hope from my new monitor — and thankful for how far I have come

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My new monitor is so amazing!   Using it releases energy for me.   I can actually “feel” that my brain is more organized when using it.    And it feels like it takes less cognitive energy for me when I use it.

I was describing to a friend today how exciting using this new monitor makes me feel.   She told me that she notices something similar when she uses her ipad (a bigger screen) rather than her iphone (a smaller screen).  She says she is able to “think” better with her ipad.   I thought that was interesting feedback from someone who is not even trying to compensate around cognitive deficits from a brain injury.    Even she can notice a difference in the size of a screen.

Upgrading computer equipment that makes my day easier or does not take as much energy out of me allows me to do more with my day.

And the feeling that I have when I use the new computer monitor is that it is opening up new horizons for me because I can think better and it takes less energy for me to use.

To me, new horizons mean new possibilities for my functioning and these new possibilities both inspires me and gives me hope for improving the quality of life in the future.

Feeling this new energy also makes me reflect about how far I have come in my recovery about earning how to manage a burst of new energy.

Early on in my recovery, I might stumble upon strategies and activities that would increase my energy and I would think that that energy meant I was “well”.   Yahoo!  Yahoo!   I wanted to be well so badly.

But I wasn’t well, I just had a little more energy.

But erroneously thinking I was “well”,  I would unintentionally overdo it because of the short-term energy and hope I felt.   Sadly, I would exhaust myself without intending to or even knowing that I was.  Often I would become “too tired to sleep” so I wouldn’t be able to sleep.   And when I did get some sleep, I would often be fatigued for days.  Or worse, fall into a downward spiral that I would not know how to get out of.  Difficulty sleeping would lead to poorer cognition and then more difficulty sleeping and ultimately my mood would sink.

I had not learned important skills like acceptance about my injury and I had not learned awareness about my injury.    These are critical skills for recovery.   When I finally was referred to speech and language therapy, roughly 3 years after my accident,  I learned acceptance and more awareness.  And I learned about how to manage my injury better so that I could be more functional.  I learned to pay attention to my long term recovery.

As I write this, I realize I have come along way!

After years of increased acceptance and awareness and practice, I have learned to notice the increased energy and let it inspire me.   I have learned to work with the energy to help me improve slowly and easily over a longer period.

And, I have also learned not to get fooled by it.

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Optimizing my brain functioning — my new monitor!

aforrest Leave a comment

Because of my training and work as a PhD economist prior to my injury, I think about things like how to optimize my brain as best I can.    Prior to my injury, I worked on issues that are now called “sustainability”  or “sustainable development”.  I did research on U.S. development and made suggestions for improvements for other countries hoping to leap frog past the mistakes made in the U.S.

After my injury, I have learned abit about how to harness this prior training and research to help me get better (in other words, develop and improve) after my injury .

When I can, I try to think (and I seek help to think about) better ways to optimize my brain functioning.

And, I also think (and seek help to think about) next steps to re-optimize my brain functioning each time my slow but steady improvements in my abilities take me to a higher level.

My new, bigger, monitor that we bought this week has helped me tremendously.   I cannot believe what a difference it is making!  It is opening up space for me to think better.

And in being able to think better, it is opening up new horizons for my recovery.

Let me take a step back.   When my head swung from side to side and front to back during my accident, connections in my brain were either stretched or broken.   It’s like the telephone wires could no longer pass signals across them.  I never knew how many telephone lines there were connecting parts of my brain, until they no longer were passing signals to keep parts of my brain connected!

I did not have damage to my eyes.  My eyes are fine.   However, connections between my eyes and brain were disrupted.   And I have learned first-hand that those disruptions affect my vision.

To improve my vision and thinking,   I have worked with optometrists who understand how to help me recover these connections (often called development optometrists or visual therapy doctors).  The hard work I have done has helped me tremendously.   I believe this work has been instrumental to fostering neuroplasticity and I believe its why I do not experience the type of lengthy plateaus that many people talk about with persistent symptoms.   More on that later.

Dr Franke, OD in Washington DC (now retired), Dr Judy Hughes OD in Austin, Dr Denise Paquin OD in Northern Virginia, and Dr Denise Smith OD in Austin have helped me alot with exercises, daily living suggestions and recommendations about optimizing my functioning on the computer (versus my increased cognitive fatigue from working on the computer) that have helped me tremendously with my recovery.  I have made alot of progress.

Buying a bigger monitor is following through on a recommendation made years ago by Dr Franke.   At the time, I wasn’t in a position to make the change, but I kept it on my list of things to do in future.

With our move to Austin, I have been using my laptop monitor on my computer.   (So, I have used a smaller screen than my previous home computer).   I have had lots of improvements with my eye-brain connection in past two years through my vision therapy exercises, my physical exercise and some chiropractic therapy.    With the new purchase,  I have gone to a monitor that is 24 inches wide by 15 inches — so a big change compared to the laptop.

What I am still surprised to experience each time I use my computer is how much clearer I can think with the big screen!

My non-technical explanation of my experience is that my brain can better organize what I am taking in visually.   And once I have written that description, I realize that that is a good description of what my visual therapy exercises do for my brain, in general.   It seems like the monitor is enhancing my brain’s organization abilities when I use the computer, rather than un-enhancing or not enhancing them at all.  This means that I am giving my brain practice at better organization when I use the monitor or at least not making my brains organization worse each time.

Amazing!  Just thinking about the improvements from the new monitor gives me new energy and hopes for more continued improvement for my brain.

Is it possible that the monitor will help me improve brain-functioning at a faster rate?

 

 

 

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The Power of Reflection — revisited, at a deeper level

aforrest Leave a comment

I love it when I am in a reflective place where I am appreciating how my life has improved during the year.

I was thinking about that improvement this morning.   I was heading out for my walk and I was cued by seeing my sun block so that I could use it BEFORE I started my walk. I have consciously looked for, and found, a place to put my sun block so that I see it on my way out the door. When  I see it, I am reminded to put it on.  The “cue” — seeing my sun block on my way out the door — means that I can get the sequence right (put sun block on before walk). The cue frees me up so that I am more likely to get sun block on either because I remember to do so (sometimes) or because I am cued to remember it. Either way, my life is better with the sun block on for my walk, and because I am training my brain about the sequence.

As I was putting on the sunblock this morning, I remembered what the pattern was like on my almost-daily walk in Arlington, Virginia before we moved to Austin, Texas. I would often have already passed by several houses when I realized I did not have sun block on, if I realized it at all. So I noticed that and tried to improve upon that. And over the years, I have. In Texas, wearing sun block is much more important than in Virginia because the sun is so much more intense here.   And I have made alot of progress on getting it on.

Like I have said, small things make big differences in my world.

I realized the other day after I posted on reflecting about my “rehab” accomplishments, that I had a lot more to say about the improvements that I have had this year in the continued “re-training” my brain department.

Why do I need to re-train my brain still? Because I have persistent symptoms from my concussion/mild traumatic brain injury that I am still working a way on and, in working on them, I am improving my quality of life and functionality. The kinds of persistent symptoms that I am working on are mostly in the executive functioning category. What is executive functioning? My non-technical definition of executive functioning is the more advanced brain functions like getting a process in sequence, getting things done in a certain time, determining what activity has priority over the others and accomplishing it, getting more than one thing to happen by a certain time and taking in new information into the process.  I will have to look up the more technical definition in a future post, but that is the working definition that I remember from my formal rehabilitation.

What I have learned is that the more often I can combine rewiring activities with another activity that I am already doing during my day, the better.  That way, I don’t have to find separate, extra time in my day to do the rewiring work.   Since I have to do the activity anyway, if I can work on rewiring at the same time,  then the rewiring work will be done on a regular basis. And the more I practice, the more I train my brain with the new habit.

The trick is that I often have to be conscious that I am doing a training activity — and that means doing it more purposefully to imprint it on my brain.   Doing an activity more purposely, sometimes can mean doing it slower.    I remind myself that I am training my brain the way I want it to work in the future and that slower will make it better in the long run.  (No multi-tasking allowed!)

Raising my son is the best example of a daily life activity that has also pushed me along in my rewiring.    As a mom, I have to think ahead — so that exercises my planning skills.   I have to think ahead about how to direct him and focus him on what he needs to know about and learn.   And I have to look for effective ways to encourage behaviors in him that are good for him and away from behaviors that are unsafe or are not age appropriate or that I don’t want to encourage.

My doctors have been very encouraging that I am at the point in my recovery where taking care of a child is beneficial to me.    There definitely was a long period where I couldn’t even take care of myself, much less another.  I have had a lot of help on learning about child raising and have been taught how to build a support system around doing it.   But my point in this blog post is that raising my child is rewiring that is mostly fun to do and that I am able to take advantage of during my day.

My son is 5 years old and thriving in his preschool class.   He’s doing well, loves school and loves his friends and family.    His progress is amazing.   And when I reflect on my accomplishments this year in my rewiring, I can count the progress in his growth and development as rewiring work and progress for me also.

If you would like to read ahead about motherhood and my injury:

www.brainline.org/content/2011/10/bringing-up-baby_pageall.html

 

 

 

 

 

 

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