hope

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

Empowerment from Role Models

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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!

 

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2015 New Year

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.

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Automaticity Part 1

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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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A Good Doctor

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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

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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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Neuroplasticity = Hope

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.

 

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Being gentle with myself

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I am 70% back to my baseline before the setback that I had.

My Neurologist, Dr Thomas Hill, thinks that the symptoms and setback were caused from headaches causing sleep issues for me which in turn caused increased cognitive deficits.  Since I already compensate around cognitive deficits, I am trying to adjust as best I can to the, hopefully temporary, increased cognitive deficits.   What I have learned in my recovery is that sleep deprivation causes the same symptoms as brain injury.  So the good news about that is that solving the sleep issues will solve the temporarily increased cognitive deficits.   And, like Dr Hill said, because I have successfully resolved 70% of my symptoms, it is likely that I will be able to resolve the other 30% of my increased symptoms.   He is confident of that I will, so my job is to be hopeful and continue to do what I have been doing and believe in his confidence.

It has been 6 weeks though and realistically I know that recovery from these increased deficits will happen at their own pace.

I also know that this recovery may not happen in a linear fashion.   What that means is that each step may not get me better, it may be that each step will lead to getting better but not all steps will look like progress until I am actually fully back to my baseline.   That is important because I know that getting my head and my psyche on board with my continued recovery is essential.

In some ways, achieving this last 30% back to my previous baseline will be much harder than one would think.

Here are all the things that I am balancing.   I want to resume my life as it was.   Its been 6 weeks, so I have put a number of things that I had wanted to do, “on hold”.   And I want to get back to them, above all.  Doing the things that I enjoy and give my life meaning–being a mom, a wife and an advocate–are what keep me going in life.   So not being able to do them like I could before, as a result of my increased deficits, makes my life tougher.

Since my deficits are not as bad as they were 4 or 5 weeks ago, after the setback but before I was able to turn the corner on getting better, it is easy for me to think that they are all gone.  They are not, and I need to finish the recovery, else this period of not being completely back to my baseline will be prolonged.   And I know from experience that it is easy to think that I can “push past” this period.   I also know from experience, and from the wisdom of my health professionals, that ”pushing past” the deficits I still have, won’t shorten this period of increased deficits.

My real choice is to continue to heal or to prolong my increased deficits.

My real choice is to spend more time and energy focusing of recovery and hopefully recover quicker, or to spend less time and energy focusing on recovery and recover less quickly.

The uncertainty of whether I will recover the last 30%, is of course the thing that ultimately is bothersome.   I have to believe in my doctor and my experiences of recovery and I have to have faith.

I was thinking this weekend that given what I am going through now, thank goodness I have been through this recovery and rehabilitation before so that I can rely on the increased awareness and knowledge and compensatory strategies that I learned in rehabilitation.

As usual, when I sit down to write, I have way more to write about than what I have planned.

Since I am still observing increased cognitive rest (20 minutes on the computer at one time), I am going to post this and save the rest for the next post.

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Staying afloat — Part 2

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Last week I wrote about the difficulties that I have been having this past ten days with headaches, difficulty sleep and increased cognitive deficits.  I had gone to a health professional and these started happening after my appointment and when I tried to use the equipment that she/he made for me that was supposed to help me with a health problem.   Instead of helping me as I hoped, I am now working really hard to return to my baseline before my appointment with the health professional.

I loved the name of the strategy that was suggested– to “stay afloat”.   I had been using a strategy called “ride it through” that I had been taught in rehabilitation which I have used alot.   Stay afloat appealed to me because it acknowledged for me more validation of the difficulty I was facing.   The validation that it gave me was that I needed to be cautious of being sucked under.   What it made me see was that after a week of managing headaches and sleep issues and from not being able to be engaged in my life as was my normal, I was at a heightened risk of getting some situational depression.   Who wouldn’t get depressed when dealing with this, especially when I work so hard during my daily life to manage my life so that I don’t get headaches, and to manage life so that I get sufficient sleep and so that I don’t set off increased deficits.

Managing the increased health issues that I am having has reminded me that before getting all of the rehabilitation that I have now had, I did not know how to help myself around the symptoms (called sequalae) from my mild traumatic brain injury and that I have gone through much worse times than now.

So I wanted to point out the difference between trying to manage my life without the help of rehabilitation professionals versus now because as bad as what I am going through now, it was much worse dealing with all this when I not only had the sypmtoms but also had to find the doctors who could help me, and help them understand why I needed help at a time when I ha undiagnosed aphasia as well as other issues that compromised my abilities to get help.   Since I got some help, but did not get to appropriate resources for cognitive therapy and occupational therapy in the rehabilitation hospitals long after my concussion, I know the value of rehabilitation because I know what my life was like with out it.

I want to make two observations about my last post.   One, I purposely did not name the health professional I was working with since in truth during my recovery, I have had some similiar expericenes with all kinds of health professionals both those who purported to understand brain injury and health professionals who I needed to see who had not specifically studied brain injury.    Although I chose at that time to use the word health professional, I have decided it is useful to be more concrete in writing this blog post.   The health professional that I was working with was a dentist and so someone that I need to interact with at least twice yearly for checkups.    I selected my dentist carefully when I move to Austin (as I do all my doctors) and this dentist was not the first dentist that I visited which tells you something about the care I put into finding the right health professional.   I do hope that in using this example from my life, that my readers will understand that this experience often applies to health professionals, and is not specific to interacting with the dentist when one has persistent symptoms after brain injury.

The other thing I want to point out is a decision that I made in writing my blog midway through the post.   When I started writing my last post, I worked hard to edit it re-reading a paragraph after I wrote it.  So as I see it, the first part of the blog shows my editing of it.    While I was writing, I realized that my deficits were sufficiently increased (compared to my baseline before the dentist appointment)  by headaches my lack to sleep and that I was making mistakes such as omitting words, writing homonyms, spelling, and sentence structure issues, some of which I could see and others that don’t usually make and was not aware that I was making.

I made the conscious choice not to edit my words.

I will tell you why I made that decision.

Because 4 or 5 years in to my rehabiliation, I learned something about my brain injury that was eye opening to me. At the time,  I was working with the speech therapist who turned my life around, Liz Joiner.   I don’t recall just quite how this came about, but Liz saw something that I had written before I had time to go back and edit it.   Because I had done a lot of writing before my injury, it was my habit to edit my work.  Although I had a brain injury and was in rehabilitation for my brain injury, I still had my habits.   Until Liz recognized it and pointed it out to me, I was not aware that this habit of editing stood in the way of others seeing how my deficits were showing up in my writing.

So I wanted my readers to see the unedited version and the difference between my editing and my non-editing at a time where my deficits are increased.   “Show it, don’t say it” is the expression that a writer friend of mine has said over and over.

Since I am still recovering (although I have turned the corner from the risk of depression once I realized what was happening), I am going to stop writing for today.  I have already spent more time than I thought prudent before I started.

I went to review this on Sunday, and decided that I would post it as I wrote this yesterday and not edit it.

I am supposed to be resting so that I can get back to my baseline before all this happened.    Its a struggle not to (edit it), but I need to put my health first.

 

 

 

 

Read More - Staying afloat — Part 2

Listening to my body

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Perhaps one of the biggest gifts of recovery from brain injury is learning how to listen to the very subtle clues of my body and changing my actions in response to that information.

This week, the clues from my body were not subtle at all.    I have had a lot on my plate for awhile this spring.   At the same time, I have felt that I did not need to observe the same limitations that I have learned to observe in the past.

Its a tricky balance to figure out — how much to take on and how much to observe what I have already learned about my limitations.    Since I want to allow for improvements in my ability to function, I want to be flexible when I feel that I can take on more.    At the same time, I have to feel my way into how much my restrictions/limitations are changing  or how restrictive my new limitations are.   This is a trial and error process.

Earlier in my recovery, I call the trial by error process “error by trial”.    With a brain injury–with parts of ones brain not working well–its hard to learn to stop doing things that are making you feel worse, especially when I could do so much more before my injury that I had no sense for–and no experience about– the limitations that my brain injury imposed on me.

Earlier in my recovery, I needed a doctor or health professional who was knowledgeable about brain injury to help me with the trial and error process and to teach me awareness.    Because I did not get to appropriate health care early on in my injury, this meant I had to learn alot about my limitations on my own (which was very frustrating and marginally successful to say the least!).    I am especially grateful that my eye doctor, Dr Francke, helped me learn some of the basics on this by observing me twice a week at my eye class and by reviewing my activities with me on a weekly basis.

And the devil is in the details!   Figuring out the balance of how much rest and how much exercise for optimal recovery and when to increase rest and when to increase exercise is not easy.   For me, the help of a health professional was tremendous.   While my eye doctors have been very helpful for me with this, so too have been the speech and language therapists, occupational therapists and physical therapists who eventually helped me with this as I was successful in getting more and more treatment.  Because they were observing me with regularity they could make seemingly suggestions or tweaks.  What I experienced  was that often small suggestions had large consequences towards improving my functioning.

As for this week, I had to stop everything that absolutely did not have to be done this week, until I felt better.   That meant resting horizontally as much as I could while my son was at school and getting increased sitters for the week.

It meant using all my compensatory strategies like:

–putting things that didn’t have to be done off,

–getting take out,

–limiting my driving,

–eating as healthy as I can;

–sitting down everywhere I went;

–getting a little exercise but not as much as I normally do;

–doing things that were inspiring or fun — like noticing the beauty of spring — that gave me some energy;

–and generally conserving my energy as much as possible.

I feel much better, but am still taking it easy to try to get back to my “normal”.

I didn’t think I was going to be able to write the blog this week.    I feel well enough to spend a little time on it but will spend less on it and come back to it if I need to next week when I hope to have more energy.

 

 

 

 

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I Want my Brain Back Forward!

aforrest 1 Comment

I am feeling really inspired after attending some sessions at SXSW Interactive Festival here in Austin this week.

I did a mentor session with Nancy Currie, a life coach, from Toronto.   My intuition told me to pick a session with her.

I told her that the title and magazine article from The Washingtonian is still really meaningful to so many people.

It has helped them validate their experiences and know that they are not alone.

It was published in 2007 and still helps people 7 years later.

www.washingtonian.com/articles/health/i-wanted-my-brain-back/

I am so appreciative to Sherri Dalphonse, the editor who did a superb job framing the title and writing the article.

As my own recovery has moved forward, so has my advocacy.

And as my advocacy for people with brain injury has moved forward,  I have realized that I don’t really want my brain back.

Yes, you read that right.

Like everyone else, I want my brain to be moving forward.

That is to say, when I lost my brain (as I knew it) after the concussion during my car accident in 1997, I began to think I would never have my brain again.

Especially because I did NOT get to appropriate rehabilitation treatments for many years.

What I have come to realize is that my brain couldn’t move forward from that trauma without all the appropriate rehabilitation that professionals at the top of the brain injury field already knew about, but that I did not get to in Washington DC for reasons I still do not completely understand.

Eventually, over many many years, I found the appropriate treatments in a very piecemeal fashion.  I also had to discover a lot about recovery on my own.

Slowly I learned to describe what was wrong with me better and eventually how to advocate better for the treatments I needed.

My early treatments of vision therapy may have been some part of the reason why I could begin to describe what was wrong better.   None of the doctors I went to at the time understood or appreciated the value of the vision therapy.

Through a lot of struggle and hard work I eventually found health professionals who understood what was wrong including some of the doctors I was already seeing.

I thought it was me who had such a hard time finding the right professionals who could help me.

What I have learned in my advocacy is that it happens all over the U.S. (and most other countries).

It happens all the time, in 2014, that people with concussions who need help are not getting the treatment they need to get better.

If people with concussion/mild traumatic brain injury cannot get to the right treatments, they cannot get back to work!

Years and years after my injury, I understand that just like anyone else, we with brain injuries want our brains to move FORWARD.

And we need help getting our brains and ourselves past the medical trauma to the place our brain’s can cognitively move forward just like every one else’s.

Natalie Currie suggested my motto ought to be “I Want my Brain Back Forward!”     

And that is why I named my blog A Plastic Brain.   Because I wanted to talk about neuroplasticity–the brain’s ability to change and get better.    It was the possibility that my brain could change that gave me HOPE.

And with HOPE, I found my brain could change.

And know I recognize that what those of us with persistent symptoms after concussion really want to know about and experience again is neuroplasticity.   Our brain’s ability to change and learn again.   Many of us can get there if we can just get the appropriate treatments.

I am still learning how to post, so I cannot figure out how to cross out the “Back” in the title that way right now.    I will ask someone about how to do it and update my post when I can.

Have you experienced neuroplasticity in your own life?   Please share your experiences with neuroplasticity after brain injury so that we can get the word out and give hope to others.

Read More - I Want my Brain Back Forward!