hope

The Value of Rehabilitation

aforrest Leave a comment

I spoke at Brain Injury Awareness Day 2011 in Washington DC.    I was the first civilian (non-pro athlete)  survivor to speak at the Congressional Briefing.  I received a standing ovation.

Other briefing panel members included: Brigadier Richard W. Thomas, Army Surgeon General; Colonel Jamie B. Grimes, Director Defense and Veterans Brain injury Center; Kathy Helmick, Deputy Defense Centers Excellence for Psychological Health and Traumatic Brain Injury; Patty Horan, Wife Of Wounded Warrior Captain Patrick Horan; Dr Lisa McGuire, Research Team Leader, Division of Injury Response, Centers for Disease Control and Prevention;  and Dr Allen W. Brown, Mayo Clinic.

Here is my Statement.

I was introduced as Dr. Anne Forrest, TBI Survivor and Advocate, formerly Senior Economist at the Environmental Law Institute.

The Topic for the Briefing was The Value of Rehabilitation and the Road Ahead

 

I’m a survivor of traumatic brain injury. I’m honored to be here. I’m up here representing 1.7 million people who get TBI each year and are correctly diagnosed in the emergency room with TBI. And I’m  also representing more than 1.7 million more people who are either NOT correctly diagnosed in the ER or who never make it to the ER. I’m in the latter category. Combined, that’s more than 3 million, or one out of every hundred, Americans who get TBI each year. Some get rehab, some don’t. Some get better, some don’t.

 

In representing this population, I know that I have big shoes to fill, but I have worked hard to have the skills to fill them.

 

I’m going to tell you about my accident and recovery. If there’s anything I want you to know, it’s how much I needed rehab, how astoundingly difficult it was to get it, and how dramatically it changed my life for the better once I got it.

 

Prior to my injury, I got my B.A. at Yale and my Ph.D. from Duke, and I came to Washington to work as Senior Economist at the Environmental Law Institute. I was a varsity athlete and an Ivy-League champion, still played competitive sports, and had an active social life.

 

I was rear-ended in a car accident in 1997 by the Lincoln Memorial. I was coming across Memorial Bridge from Virginia and merging into Rock Creek Park. My head swung from side to side and back to forth. Neurons in all areas of my brain were either stretched or broken. I drove away from my accident.

 

After my accident, unbeknownst to me, I had a second grade math level, third grade language skills, word finding difficulties called aphasia, attention and memory issues, confusion, tremendous fatigue, and irritability. I couldn’t absorb what I was reading, and I had difficulty with social cues.

 

What troubled me most about my symptoms was that I would get over-stimulated in normal environments. The over-stimulation would lead to sleep problems, and I’d find myself in a downward cycle with worse cognition and a depressed immune system. I was working really hard to keep my life from going from terrible to worse.

 

My journey to rehabilitation was long, exhausting, and often quite depressing. I was diagnosed within six weeks, which was very lucky, but I had tremendous difficulty getting to rehabilitation. My first rehabilitation was actually with an optometrist who helped me with vision therapy because I couldn’t read. That was tremendous but not enough. It took me three-and-a-half years to get to appropriate rehabilitation. That’s almost the time it took me to get through college. I got attention, memory, speech training, and executive function training. Known as cognitive rehabilitation, these are the building blocks of thinking. Rehab began a slow and steady path to recovery that eventually turned my life around.

 

Because of rehab, I can read, I can watch fireworks, I can follow the plot of a movie. But most importantly, rehab gave me five gifts for which I’m most grateful.

 

Because of rehab, I have more independence and am in charge of my own life. I use my cognitive strategies daily. I must use them or else I cannot function, and I function with lots of support from my husband, friends, and community.

 

Because of rehab, I have my smarts back. Vision and cognitive therapy allowed me to manage my cognitive issues so I could think again, and my economics training came back. I had worked so hard to get my training.

 

Because of rehab, I learned to take care of myself well enough to be able to take care of someone else. I’m a mom of a two-year-old now, who’s truly the joy of life for my husband and me.

 

Because of rehab, I have something you are watching right now. Rehabilitation gave me the groundwork for rebuilding my ability to speak publicly. It was in rehab that I learned that public speaking was the only job skill I still had.

 

When I first spoke, I didn’t know what I was saying unless I was reading it. Now, I can look at my audience.

 

I was told repeatedly that I would never get better after two years. And yet, except for the vision training, all of my other rehab and all the gifts that came from rehabilitation came after two years. Because of rehab, I’ve witnessed my brain’s ability to change, restructure, and re-wire. This is called neuroplasticity. Neuroplasticity is incredibly powerful.

 

Without rehabilitation, I don’t know where you’d find me, but possibly I would be in some gutter. The phrase “There by the grace of God go I” means a lot to me.

 

As a result of rehab, I’m a wife, I’m a mom, my life is meaningful and productive, I’m giving this speech, and I know all about neuroplasticity.

 

I have a PhD but I’m not a researcher now. Honestly, that’s a little hard for me as I sit here on this panel today with other PhDs and MDs. I will always wonder where I’d be if I had gotten to rehab earlier.

 

But I can tell you that rehab dramatically improved my life. It changed my life for the better, unequivocally and uncategorically. Notice that I’m able to use the big words now. Rehab has given me a meaningful and productive life back.

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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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The Power of Reflection before welcoming in the New Year

aforrest Leave a comment

I usually end the year by exercising my reflection skills.  I find it very powerful to reflect about how my life has gotten better during the last year and to write these down.

I find reflecting on how things have gotten better makes me be more appreciative of my accomplishments.

Many of my accomplishments happen at a very slow rate.   In fact, at a much, much slower than I would like.

By practicing things I want to accomplish over and over, I do see progress.  My brain does eventually reorganize around a habit after I have practiced it over and over.

I find that sometimes that forward progress is easy to miss or sometimes its easy for me to take the end result for granted when it finally happens because I can finally do it and its just suddenly there.

So remembering where I was at the beginning of the year and how my life and my functionality has gotten better provides useful perspective and good feelings about my persistence and my hard work.   I am still getting better.

Here are a few of the accomplishments in developing new brain patterns (or what I refer to as continued rehab) that I have had this year:

–I am driving my own car now which means more freedom for me.    I also no longer need to schedule sharing a car with my husband which has made my life as a mom to our son much easier.    I have the car when I need it and I know that what I put in the car for our activities will be there.

–Being comfortable on some of Austin’s  bridges and expanding my range are now two of the new challenges I am working on with my driving.

–I am finding time several days a week to work on my eye exercises.  I am seeing progress from that.    I am finding that there is a shift in my eye-brain connection on my right side.  This is the area where my headaches can originate (when I am not able to rest from a cognitively-intense activity before I get a headache).   I cannot quite translate the shift  into increased function yet, but I can feel that something is changing for the better.   My hope is that this shift will eventually lead to new pathways on that side and eventually no headaches.

–I am walking twenty minutes  a day and using my arms to exaggerate the motion of going from one side of my brain to the other.   I meditate for 20 minutes a day (4 or 5 times a week).    The meditation mat “draws me to it” when I am not able to make the time to meditate.     Both the exercise and the meditation help me get through the day and make my life better.

Those are some of my reflections on ways my life has improved this year.    I do this same reflection in all parts of my life.

What are the new brain patterns you have accomplished in 2013?

Where were you when the year started and where are you now?

How do you feel when you reflect on the changes that are improving?

 

 

 

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My “Ah Ha!” moment — What I wanted to know about how to recover and rewire after my injury

aforrest Leave a comment

I had an “Ah Ha!”  moment about my posts this past week.    With my brain the way it is now, I have to learn more by doing as opposed to thinking things out ahead of time.   Often,  I just have to get going on trying something new, like writing this blog.   Once I have have practiced at it abit, it comes to me where I am trying to go.

My “Ah Ha!” moment was that all my posts have been about trying to describe my “new normal” from the perspective of many years out after my injury.    You can go back and look at them.   Some are about some of the gains that I have made long after my injury–like driving and speaking to the media and how practice has helped me.

Others have been about some of the work I still have to do to stay on balance.

These have been descriptions of different aspects of my “new normal” !

So far, I have talked about how I have hope because I know how to rewire my brain and recover more functioning.  This is called neuroplasticity (and I will come back to it).    Overall, I know that neuroplasticity is working for me —  I am still getting better and the evidence that I am still getting better gives me hope that I will continue to do so.

I also know that I have persistent symptoms following concussion/mild TBI and that I am not “well” and that I need to work hard using my self-awareness, using the compensatory strategies I have learned from doctors and professionals  (in and out of outpatient rehabilitation (which it took years to get receive)).   I have also learned from self-care, from managing and respecting my limitations, and all my strategies to cope with my injury long after the initial “acute” injury–the actual swinging of my head from back to forward and from side to side (referred to as the coup-contre-coup).

And when I am on top of my game, I have to work at it very hard, but my life goes okay and is meaningful.  And my life is getting better at a slow, but overall, sure rate.  I have had long-term recovery and rewiring and it continues (although at a slower rate than I would like, but better than no rewiring at all)

And when external things come up (like they do in life) or I get sick  or I get out of balance for whatever reason, then I need to step up my work to get myself back in balance.    Sometimes I am unaware that there’s too much on my plate or I need “to be cued” to compensate for them and sometimes, it takes me awhile to recognize that I am off balance and I fall “off my game”.    This is part of life.

When I am off my game, my life can become intolerable and I am irritable and cranky and I can get down and depressed and at some times, when it gets really bad, I simply don’t want to go on.  So I know I want to do everything I can to avoid getting in to that “trough” or valley or even getting near it.    At this point in my recovery, I have learned alot about how to manage this downward cycle that I would describe like an airplane in a tailspin.   I know I need to use all my strategies to keep me from getting in a tailspin and if I am unable to avoid getting in a tailspin or do not recognize the tailspin until fairly late, then I must use them to get out of tail spin as soon as I can.    I have a list of things to do to pull me out of a tail spin and reminders to be patient because it takes time.

I think everyone’s life has its ups and downs that may need to be managed abit.   With persistent symptoms following my concussion/mTBI,  I have learned that my issues may just be more extreme.  Some of the strategies that I use might have been helpful for me prior to my injury.  Now they are critical.

And that is a rough description of some of the things that come to mind in describing what my “new normal” is like.

 

 

 

 

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Practice, practice, practice and driving

aforrest 1 Comment

I have gotten alot of results from my habit of practice, practice, practice.

Recently I got my Drivers License!

For years, I had to rely on others for rides, taking cabs, taking the bus, and walking.   But, now, I am driving.

Its a long story with many twists and much frustration.    I kept plugging away at it with lots of help, and now, I am driving by myself.   I will come back and talk about all the baby steps in another post.

For now, I want to say there were 5 big steps:

First, I had to find appropriate rehabilitation.

Then I had to do alot of rehabilitation.

Then I had to practice to take the written test again (because my license expired).

Then I had to practice behind the wheel.

And then, when I was ready, I took the behind the wheel test.

Once I got my learner’s permit and could sit in the drivers seat, I practiced, when I could, over a span of 7 or 8 years.

Who knew that there were so many skills to driving?  I certainly didn’t.

When I got my license as a teen, I practiced alot too.   At that time, I had no idea of what the skills were that I was practicing in order to learn to drive on my own.   I just practiced.

What I know now is that driving takes a lot of cognitive skills — like memory, concentration, attention, and problem solving skills — as well as visual skills and balance skills that I had to consciously re-learn.

I have these skills again!   I can drive independently.

When I was a teen and got my license I wanted to drive somewhere far away.

When I got my license this time, I just wanted to be able to drive to a convenience store to run an errand!

In both cases, practice led to more independence.  Yahoo!

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I feel hopeful when I practice, practice, practice

aforrest Leave a comment

I feel hopeful when I practice, practice, practice.

I do.

I wanted to repeat that I feel hopeful when I practice, practice, practice because it is so important to my life.

I didn’t want you to read it so quickly that you missed it.

Just doing this habit makes me hopeful.

I feel hopeful because I know that practice, practice, practice will bring me results.

I do not know when it will bring me results.

What I have learned is that following a habit that will eventually give me results is better than not doing so.

I would rather head down the path of practice, practice, practice to change how my brain works eventually,  than to do nothing differently.

And what I have learned in life is that those are my choices.   Of those two alternatives, I would rather choose the the one that may make tomorrow better than today than the one that won’t.

 

I suppose my habit of practice, practice, practice is a little like planting seeds and being hopeful that they will take root and grow for the future.

 

 

 

 

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