Staying afloat — Part 2

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.

 

 

 

 

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Staying Afloat

I have truly had a week from hell.

Mind you, I knew that my week would be more difficult and I prepared for that.

I knew it would be more difficult because this is the first week of summer camps for my son, and making the transition from no school, and a Memorial Day trip, and then a week of little structure to a week of camp is a big transition for him. His days go better when there is structure to them and when his days go better so do mine!   In addition, more structure is helpful for my days going well, regardless for him.   Less structure requires that I spend more energy getting through the day and it requires more emotional energy to be patient and to be able to tolerate what comes up.  It also requires more flexibility which is something I am trying to cultivate but is still, shall we say, “not my strong suit” after my injury.

So my Monday went more or less as I expected.

Tuesday, I went to see a health professional who I have worked with previously and whom I thought was helping me.

It was a horrible experience.    I am much worse off for seeking the health care I needed than I was before I went.

In short, I have pain, I couldn’t sleep, my cognition is worse because I am in pain and because I cannot sleep,

I cannot do my job as a mom and a wife this week.  Others — my husband, sitters and friends — have had to lean in.   I have reached out to my support network.  I have also tried to write about to help me try to process it and try to what happened.    I was aware in the health professional’s office that things were not making sense to me.

With my persistent cognitive disabilities, I could not take care of myself sufficiently although I tried.  The got out of there as soon as I could wish was not soon enough in retrospect.   I realize now that I stayed there as long as I did because I was over-committed in trying to get the health professional to help me.

On Thursday afternoon, I reached back out to Dr Wayne Gordon, an expert in unidentified traumatic brain injury and someone I have worked with on several occasions during my advocacy.   I had called him last Friday and had planned to return his call this week.

On Thursday I realized that the most I could make of this week was to start afresh next week.   I told him unforeseen events had come up that I was coping with as best I could had come up and that I would reach back out when I could.

He wrote back “Stay afloat!”

I cannot begin to describe how important his words and encouragement were.

He got it, and he got it  just right!

That is exactly the name for the compensation strategy that I was using without realizing it or naming it for myself.

What his words meant for me was that I realized was working hard to not be sucked down into a negative spiral.

Stay afloat was what my goal right now!

Once I realized that my goal was to stay afloat I realized that tomorrow would be a better day.

It has to be!

Do whatever I can to not get sucked down by the unfortunate circumstances that had befallen me in trying to get health care that I needed.

What strategies do you use to “stay afloat” ?

And dare I ask, what strategies do you use after you have seen a health professional who has done more harm than good?

Do you have a different name for this strategy?

 

 

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Compensatory strategies and Deadlines

One of the great things about writing my blog is that it is forcing me to identify what stands in the way of writing my blog posts.   I have learned in Rehabilitation that the first step to resolving a problem is to be able to identify the problem is that is challenging for me.  Then I can work to come up with compensatory strategies to resolve the issue (work around it) or I can ask others for help to figure out a compensatory strategy to help me get around the problem.

I want to point out that last week, I had to come up with a compensatory strategy sort of at the last moment and I did!   Looking back, I am pleased with myself about that.  I so wanted to finish the post I had planned and get it out. Instead I came up with a strategy when things did not work out as I planned.   I realized I just had to explain what I had tried to do and wish everyone a Happy Memorial Day and be satisfied with that.

Last week was a short week for us because we were leaving early for the Memorial Day Weekend and we were traveling (which, in short, means a lot of extra preparation and cognitive steps for me.)   I had looked ahead and made plans to get my blog post done early so that I could post it.   I had started writing my on Tuesday, as far as I recall anyway.   And I had scheduled time into my calendar on the Wednesday in order to finish my draft before we left on Thursday morning.  All was going well so far.

To explain this further, I am going to step back a moment and say that what I have learned in rehab is that planning and figuring out how to meet a deadline are all “executive-functioning” skills.   I have had to relearn executive functioning skills as part of my speech and language therapy and I was lucky to have some very good therapists who have helped me.   And before I could even begin working on executive functioning, I had to do a lot of work on attention and concentration with my speech and language therapists.   What I did not know before my rehabilitation was that attention and concentration  are important skills underlying executive functioning skills.   My vision therapy has also helped me with these skills.  While I still cannot describe how, I know that they have.

My executive functioning skills are much better then they were because of my rehabilitation.   Some of these skills are more automatic now.   When I say they are more automatic, it means I do not have to think about them and line them up consciously, they happen by themselves (again).   Like when I used to get in my car and drive before my accident, I didn’t have to think about the steps of driving my car.   I did not have to think first I put the keys in the ignition, then I put the car into gear, then I adjust the mirror, then I back out of the driveway.  I just did all of those without thinking.  That is what I mean when I say that they were “automatic” before my accident.

Suffice it to say that how my brain worked was not automatic after my accident.    I had to relearn many steps that most adults do without thinking.

Back to my last Wednesday and trying to meet my deadline of posting my blog with the skills I currently have.

It used to be that when I was not quite done with a deadline, my brain could figure out how to resolve a problem in a limited time and resolve it without me having to consciously think about it.   I still remember the brain that could do that.   Because of rehabilitation and a lot of practice since rehabilitation, I have to consciously remember that as much as I would like to be the person that could automatically resolve deadline issues, I am not that person anymore.   That means that I have to find a way to resolve the deadline issue that incorporates my current abilities around deadlines.

So I was pleased with myself last Wednesday when I realized that I needed to just wish everyone Happy Memorial Day! as a solution to not quite having the executive functioning skills I needed to finish my post and get the other things I needed to get done that day.

What compensatory strategies do you use with deadlines?

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Comprehensive Management of mild TBI

Two weeks ago, I wrote about my new friend who is trying to get medical help in understanding her symptoms that she suspects are related to multiple falls and the empathy I felt for her after my own difficult search to find the help I needed to recover after my symptoms following a car accident in which my head went from side to side and back to forward.

I want to post some information that I heard on Webinar sponsored by the Brain Injury Association of America.   The Webinair was on Comprehensive Management of Mild TBI by Dr Kevin Crutchfield, MD and Dr Jessica McWhorter, PhD.  Dr Crutchfield is the Director of the Comprehensive Concussion Program and Director of the Noninvasive Vascular Laboratories at Mt Sinai Hospital of Baltimore and Dr McWhorter is a Rehabilitation Neuropsychologist at Berman Brain and Spine Institute also in Baltimore I believe.

Before I post more, I want to say that I am a big fan of Dr Crutchfield.  I attended a seminar that he was also a participant in, and I introduced myself to him because I was so impressed with his questions for the speakers.   Later, when I had another concussion (after the concussion that changed my life and livelihood), I traveled up to Baltimore from Northern Virginia to see him for a second opinion when I my new symptoms were not resolving.   He validated the need for a new sleep test and had several other suggestions.  His referrals helped my life enormously.   And he has helped a number of people that I have sent up to Baltimore, for a second opinion, in life changing ways.

I also want to say that he is by no means the only doctor that does comprehensive care for mild traumatic brain injury.   I am posting because his webinair had slides that said what comprehensive care is.  Since I had so much trouble getting to comprehensive care, and since I meet so many people who do not get comprehensive care initially–or who, like me, do not even know what comprehensive care after mTBI is– I wanted to post what it is.

This morning I heard the statistic from Dr Cheryle Sullivan that roughly 80% of people with TBI don’t get to treatment at all.   Much less comprehensive care.   And many people that I meet, thought that they were getting comprehensive care when they went to their doctor, because surely their doctor knew about concussion.   Later they found out, when they are not getting better, that they may not have gotten all the care that they needed.

One of the many objectives of the Webinair was to identify the essential elements of a comprehensive approach to mTBI.

I want to include information from the medical part of the discussion in this post.   I wish that I had had a comprehensive evaluation when I first had my injury in 1997.   Brain injury treatment has advanced tremendously since that time.   When I think about what I wanted to know it was what comprehensive treatment for mTBI was.

So here in 2014, I want to know that I have stated what I believe is good information about what to look for in treatment.   I struggled many years with symptoms that I believe I would not have had to struggle with had I gotten to comprehensive treatment early on.   I believe I am correct about making that statement because when I finally got to most of the treatments discussed, they helped me.   Earlier treatment is thought to be more cost-effective and faster than later treatment according to researchers.

I also want to say that many of the people that I meet through my public speaking and through my advocacy have not been evaluated comprehensively and are grateful for knowledge of what kinds of diagnoses have been helpful to my recovery and others, and what kinds of treatments are available so that they can recover further and move their lives forward as best as possible.

In the Webinair, Dr Crutchfield, a neurologist by training,  presented and discussed the following information:

Diagnostic evaluation should include:

-concussion scale

-neuro-ophthalmology (which includes vision therapy (added from my notes by ASF))

-referral to a mTBI program

-sleep test and referral

–physical therapy

–speech therapy

–cognitive therapy

–EEG

–Imaging

Source: Comprehensive Management of Mild TBI, slide number 22.   Dr Crutchfield, Life Bridge Health and Mt Sinai.

My layman’s understanding of a diagnostic evaluation is that the Doctor should consider all these possibilities and should pursue evaluation if the symptoms presented warrant it.   For example, an EEG might be done is seizure is a possibility but not done if seizure is not a possibility.

Since I am translating this information for the non-medically trained I want to present a second slide about what is treatable.

The slide is:

What can we Treat?

When rest alone provides no relief.

–sleep disturbance

–headaches

–visual disturbance

–mood alterations

–behavioral alterations

–vertigo

–imbalance

Source: Comprehensive Management of Mild TBI, slide number 28.   Dr Crutchfield, Life Bridge Health and Mt Sinai.

I will reach out to BIAA to find out is the Webinair is available for viewing and how one views it.   I reached out to Drs Crutchfield and McWhorter about their webinair last week and I hope to hear back from them.  I have questions for them and I will report back.   And in my next posts, I will post more about the concrete ways that comprehensive management would have helped me.  I also want to discuss that comprehensive management of mTBI by doctors and health professionals is also a goal of the Ontario Neurotrauma guidelines that I have posted earlier.   www.onf.org.

 

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Happy Memorial Day!

I wrote a draft post this morning to follow after the post I wrote last week on finding the best care after Mild TBI.

When I looked back at the draft, I felt uncomfortable with it.

After I thought about it awhile, I realize I just wasn’t sure how to finish it.  It needs to sit with me a little longer.

We are traveling to be with friends for the Memorial Day weekend.

I need to follow my compensatory strategies for packing.

I need to concentrate on doing all that I need to do to make travel as easy as possible for my family.

Happy Memorial Day!

 

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Finding the Best Doctors

I have been trying to help a new friend who suspects that the symptoms she has struggled with for years, since age 16, are possibly the result of cumulative brain injuries during falls.

She found the article in the Washingtonian Magazine about my recovery and much of it seemed so familiar to her that she reached out to me. www.washingtonian.com/articles/health/i-wanted-my-brain-back/

Because of my own struggle finding appropriate rehabilitation, and my own health and functionality improvements when I did get to rehabilitation, her story touched me.

You see, many years ago, I remember reading Dr Claudia Osborn’s book  “Over my Head: A Doctor’s Own Story of Head Injury from the Inside Looking Out”.

Reading her book helped let me know I was not alone.  And I had felt very alone on the day I found the book at the Barnes and Noble on 18th and L  Streets in Washington, DC.

I was roughly two years out after my injury, and I had just gone to see my neurologist and was feeling depressed as I sorted through the appointment in my mind.   I don’t even remember what I felt depressed about but my guess was that I felt no one seemed to have the urgency that I felt was needed when it came to fixing my brain so that I could get back to work and get on with my life.  I was desperate for answers and hoped that there would be something on the bookshelf that could help me.

When I say that I remember “reading” Dr Osborne’s book that is not quite correct.  I remember the book, that part is correct.   I just wasn’t able to do what I would call “reading” at the time. So looking in a bookstore for a book about brain injury wasn’t something I thought to do — I avoided books.

I couldn’t really read, and whatever you’d call what I was doing–looking, skimming, taking in what I could–I could not do more than 2 pages at most at a time.

While I cannot say that I was aware of what was wrong with me after my injury, I was aware that I couldn’t absorb what I was reading.  I noticed that while trying to read Time Magazine in the waiting room for one of my doctors.

So looking at and taking in just a little of the text that Claudia Osborn had written made me sob.  Not just cry but sob.

I felt that Claudia Osborn was able to articulate all the things that I would say if I could tell my story.  I felt that she was telling my story even though her injury was different.  And she found access to doctors and resources after her injury.

From reading her book, I knew that Claudia “got” what the injury was like and that she could describe it.

That meant there was at least one other person in the world other than me, who got it.   And she could articulate in print what her experience was like.  Which I couldn’t at the time.

So when my new friend reached out after reading my story in The Washingtonian Magazine, I wanted to help her get to good medical care. I wanted to help her so that her journey would be a little shorter and perhaps a little more efficient and a little less of a struggle than mine.

And, if her problems weren’t from brain injury, I wanted her to get to doctors who were knowledgeable enough to know that persistent symptoms following brain injury was not her problem, and not a doctor who wasn’t knowledgeable enough to clear her appropriately.

You see, in my journey,  I have learned that some doctors really understand brain injury and patients are lucky to get to them.   However, many doctors were not sufficiently trained and hence are not sufficiently knowledgeable about concussion or about persistent effects following concussion.  Doctors who are not sufficiently knowledgeable cannot help a person who actually needs further medical care for their symptoms to get to the right place. Another frequent error that I have learned that some doctors can make is to tell the patient that their symptoms are definitely not a brain injury when they are not knowledgeable enough to make that determination.

How have I learned this?   I have learned this through my experience first and foremost. Although I desperately needed rehabilitation, I had quite a struggle getting to it and there were many barriers and pitfalls along the way.

Getting to appropriate specialists and getting to rehabilitation turned my life around.   So I am going to be brazen here and say that if I had gotten to that same rehabilitation earlier and in a more consistent and less piecemeal fashion, it would have been beneficial to me both in terms of my health, my productivity, my well being and my finances and my livelihood.    (It would also have been beneficial to my  health insurance company’s finances!).

I also know this from hearing countless stories from others who cannot find the health care they need, or worse, who are being told they are malingering, even as they seek care.

I also know this by talking to health professionals and from volunteering at the Brain Injury Association of America and talking with staff members at WETA/Brainline in Washington DC.  I know it from my work with the American College of Rehabilitation Medicine and from my work with the Ontario Neurotrauma Foundation.

The researcher in me also knows that there are several academic studies that provide more objective evidence about the pitfalls of getting to care. However, citing those studies right now on this blog is a little of a leap of faith for me because I don’t have the memory skills to find the studies and I am still struggling with learning what research I feel comfortable talking about and what I do not yet feel comfortable with talking about.  I am still not very organized, and even 2 1/2 years after my move finding and citing the research is still a task that I have not had the time to master. However, I am hoping that providing research citations is something that someone will help me learn soon.

What I will say from my experience is that many survivors, just like me, do not know that they are not getting to appropriate care after mild traumatic brain injury.   And it may well be the case that most survivors of mTBI do not get appropriate help.  As I said in my speech at the Congressional Briefing in 2011, the estimates of the annual number of people with brain injuries that are not identified in the US exceeds the number that are identified.   That is an astounding graphic!  (I just looked for the graphic on the Center for Disease Control and Prevention (CDC) website and cannot find it, else I would post it!)

Many, like me, are not even counted in the statistics on mTBI.   People with mTBI are not counted in the CDC statistics because we either were not treated in the emergency room or our injury was not identified in the emergency room.

Its impossible to study directly how well those who are not counted in the CDC statistics are treated, if at all, and how complete their recovery is or is not.   I think that is a fair statement.

 

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What Mother’s Day 2014 Means to Me

This week, I attended the Kindergarten Roundup with my 5 year old son.   Kindergarten Roundup is a way for 5 year old’s to visit their future kindergarten school and begin to get ready for next year.

At my son’s new school here in Austin, Kindergarten Roundup includes a Dinosaur play performed by the current kindergartners for the incoming kindergartners.

My son picked a seat in the front row.  He invited neighborhood 5 year old friend and her mom to sit with us.

During the play, my son spotted three of his other neighborhood friends who were in the play and pointed them out to me with huge excitement.

My son loves Dinosaurs and to watch his friends sing about what they have learned about dinosaurs sent my son, and me, over the moon.

To prepare him for the event and to make kindergarten more welcoming for him, I had reminded him which friends would be in the play, so he knew whom to look for.

I was pleased that my son took the next step and spotted them and pointed them out to me, one at a time.   Other than telling him the names of his friends, I also told him the only other clue I had about whom to look for which was that one of his close friends was a “Rock Star” in the Dinosaur play.

He located all of his friends on stage and off stage by himself and told me each time he found one.

As my son and I sat on the front row watching the Dinosaur Play, I realized how special it was, and how amazing it was in my life to be sitting in this room at this time with him.    It flashed in front of me how many barriers I had to overcome to be this moment to be happening.

What were the barriers I overcame:

–I had to learn how to take care of myself again after my concussion.

–I had to find appropriate rehabilitation after my concussion with my cognitive issues standing squarely in the way of my ability to tell my doctors what was wrong and advocate for myself.

–I had to practice my own self-care over and over until I got it into my routine.  (This is called relearning executive functioning skills)

–Once I learned how to take care of myself as part of my rehabilitation, I had to practice and practice taking care of myself over and over again, until I could do it well.

–I had to practice taking care of other children so that I could take care of my own.

–I had to learn new cognitive strategies to make sure my child would be well taken care of and safe and to make sure I could be a good mother to him, to work around some lingering cognitive issues that I still had.

–My husband supported me through all of the practice I did, and got some practice himself!   Some practice was unintentional in that part of our adoption journey was practicing for two years during an adoption that ultimately was not successful.

–My husband and I navigated together two adoption processes.   The second one was successful.

I did all of that!   All of that had to happen for this moment to be happening.  Here I was sitting on the front row with my son watching the Kindergarten play with my neighbors!

And all the practice that I have had and all the knowledge of development that I have learned from the inside out with all my recovery, has helped me to be a much better mom than I would ever have been before my injury.   I have been able to give my son many gifts of understanding and compassion.   Rehabilitation and self-care have also given me the ability to break things down into smaller steps–baby steps– that are only understandable to me because of my insights from my recovery and the teachings that I have learned.

Pinch me!  How meaningful it is to have my family and celebrate how far we have come together this Sunday.

And thank you to all those who have supported this journey, including my many doctors and health professionals, my case management services at Brain Injury Services at Northern Virginia, my adoption support group in Virginia and the one we are building here, many other moms who have taught me lots of tips, my husband who I have mentioned before (but who I cannot mention often enough) and to my old friends and new ones.

I also want to thank Renee Trudeau who wrote a blog post about self care for moms and asked the question what self care meant to me.   I was introduced to her by a lovely friend and life coach in Virginia, Alison Horner Cardy. I met and got to know Alison before I moved to Austin because she was the nanny for my son’s friends at that time.

I love Renee Trudeau’s book The Mother’s Guide to Self-Renewal because it normalizes some of the difficulties that I face as a mom and provides suggestions.   I want to thank Renee Trudeau for the inspiration to write this blog post.    For me, it was thinking through the question she posed about what does self-care mean to me that I came up with this blog post on my walk.

In thinking through her question about self-care,  I thought about all the work I have had to do with self-care following my injury. With my injury, self-care is mandatory, not optional.  Without it, my functioning goes way down and my life becomes intolerable.  Self-care is mandatory for my life to work.

And ultimately, self-care has meant that I can take care of my son!!!  Hence the post that I wrote.

If you want to read more about my journey with my son:

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

 

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Listening to my body

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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The Road Ahead for the Blog–Part 1

I wanted to take a moment to look forward about where I would like to go with my Blog.

This assessment includes looking backward about how far I have come with my Blog.

Self-assessment is one of the gifts from my rehab.   After my accident and before I got to rehab, I had an immense difficulty learning from my mistakes.  When you cannot learn from your mistakes, you make the same ones over and over.   Making the same mistakes over and over again is very frustrating, to say the least.

I am grateful to rehab for giving me back the tool of self-assessment and new learning.  Having lost these abilities and having re-gained them, I am very aware of their value in my day-to-day life.

When I started my blog, my goal was to write a blog post once a week.   I have accomplished that.

Wow!

Since September, I have written a post each week.   So that is roughly 8 months of practice doing a post once a week.

I must admit that doing that writing hasn’t been easy to add to my schedule.  But it has gotten easier with time, overall. On the rough weeks, I get my a post out by Sunday. On good weeks, I get it done earlier in the week.  But whether my blog post gets published on Tuesday or Sunday, I have been successful in getting one out every week.

Working something new in my schedule is always tough for me.  Its a piece of executive functioning that my brain is still working on.   And I have other things in my schedule that I need to stay on top of, like moving forward my son and family’s life and a lot of doctors appointments.  (I am still working on re-establishing my team of doctors here in Austin).   So managing all that takes a lot of work and compensatory strategies.  So that has been a tremendous challenge.   But I am managing it and it has gotten easier.

My process is usually to write a draft early in the week, give it a day or two, and then go back and edit it and finalize it.   That has been really helpful to let it percolate and go back to it.

Sometimes I realize that the topic I first wrote about isn’t what is compelling to me to write that week, so I start anew.

I had tried to post a picture on my blog.   I seemed to have dropped the picture around the holidays.   It was fun to do them and to think of the theme visually.   However, I haven’t learned how to post a picture, so I was dependent on someone else doing that piece for me.   Since it was hard enough coordinating my own schedule, I found needing to wait for someone else to help me with that piece was something I did not want to work on just yet.  It added to my frustration too much and I find I do better when I don’t do things that add to my frustration level.   I have enough frustration to manage with out adding more.

One thing that I have noticed is that I am not good at writing headlines.   I chuckled with I realized this.   I chuckled because as I reflected on whether this was a brain injury thing or not, I realized it may not have been a strength before my injury.   I recall my dissertation adviser, Kip Viscusi, telling me that I needed to learn how to write snappy headings for my dissertation.   While I remember when he said that to me, I don’t recall if I learned to write better headings after he made that suggestion.

And, one of the reasons I have difficulty with the title is that I typically sit to write one thought, and as I write I realize that that one thought is usually five thoughts.  Or that articulating the thought is much more complicated than I realized before I started writing.    So as I try to articulate the thought in a simple way, I sometimes forget to look as to whether the title syncs up with the body of the text.

Another thing that I am cognizant of, but haven’t yet figured out how to do, is make my blog more accessible.    I couldn’t use the computer for three years after my injury and still have to use compensatory strategies to use the computer.    So I am very aware that I want to make my website and blog as accessible as I can so that someone who has visual issues like the ones I have recovered a lot from, but still have, would be able to read at least some of my blog and website.

I reconnected with the accessibility community at SXSW.   I hope to get more help on improving my computer skills and knowledge to make using the computer easier and more efficient for me.   And to improve the accessibility of my website and blog.

 

Read More - The Road Ahead for the Blog–Part 1

Why Telling Our Stories Matters — Part 1

Earlier this week, I agreed to do an interview with a Journalism student named Eli Hillen.   He’s doing a photo journalism project on the topic of loss.

He reached out to the Brain Injury Association of America looking for someone to talk about memory loss after brain injury.   They reached out to me.

I am not exactly sure what motivated me to make some suggestions to him about resources and people who could talk with him about loss after brain injury.

I did want to make some suggestions to him to guide his search.   I  have seen some articles on the topic of loss after brain injury and I think there is so much more that needs to be written about it and done well.

I must say, though,  that I have never felt the urge to contribute about the issue of loss after brain injury before.

I had a packed week, so it wasn’t as if I really had any extra time to talk.   But I responded with some suggested resources that Eli should read.  And then Eli said he’d like to talk with me by phone.  And then someone cancelled an appointment, so there I found myself talking with Eli and answering questions about the topic of loss for Eli’s project.    What I thought would be a fifteen minute call was so engaging that it lasted over an hour.

And, as is true anytime I answer questions from a journalist or student, I find myself thinking about my injury and recovery in a way that I wouldn’t have done had I not spent the time and energy to do the interview.

To go a little deeper, I had to write and tell my story quite a bit to get to the point where I could process and remember and understand my story for myself.

I had to do a lot of work writing my story for myself before I could tell my story and before I could give interviews.

Writing and telling my story over and over has helped me to process many difficult emotions–like anger and grief and frustration–to name a few.

It’s also helped me come to terms with the reality of my injury and the difficulty of finding appropriate resources to recover.

Often I have written my heart out about whatever is in my head.

Then, when I have read what I have written, I have cried and cried.   There is something about seeing one’s words in black and white.

Writing has helped me see concretely the difficulties that I have had with just writing my thoughts and how my verbal expression has changed after my injury.

The starkness of my words on paper has helped me understand my deficits better and feel my feelings about the change in my abilities and my functioning after my accident.

And answering the questions of journalists and students has also helped me get to questions that I would never have thought to think about for myself.   Hence answering questions from others has allowed me to examine topics that my brain would not have gotten to on its own after my injury.

In examining the questions when asked by others, I have had to reach for considered answers.  Its almost like I can feel my neurons try to reach out to parts of my brain that aren’t yet so accessible to me because I haven’t gone there in my brain yet.

So I answer what is top of my mind, and then sometimes, I will find myself thinking about the question and a larger, fuller answer later.

When I first started talking to journalists and students, sometimes I wouldn’t be able to sleep that night, because my brain would still be working on an answer.  I learned how to get up at night and write things down so that I could get the thoughts out of me.  After I had done that,  I could sleep.

The next morning I would send off my written thoughts or corrections to the journalist or student (if they were interested in this information that my brain eventually wanted to express but couldn’t express on demand at the interview).

Over the years, I have been able to express more during the interview.  Thus, there was less information needing to come up out of my brain later to keep me up at night.

So the process of telling my story to others has improved and its much easier for me to answer questions in an interview than it used to be.

But, I am getting sidetracked.

Back to my interview with Eli.

There are two big gifts that Eli gave me with his two questions during the interview.

1) While I did not see it coming before the interview, I was surprised and pleased that Eli asked me gently to talk about the flip side of loss… which is gain in the long term after the loss.

2) And, the question that he asked that I found so interesting and hard to answer was:  “What motivated me to try to get back the things about my brain that I lost?”   I keep coming back to think about that.

So here is my more considered response to these questions:

I lost so many things with my injury… But over time, I have had had many gains also:

I lost my sense of self so I had to find myself again and I am a bigger person for doing that work,

I lost my ability to function independently so I had to learn to function dependently and independently when I could,

I lost my brain as I knew it (which means I lost what it meant to me to be me) and I had to find how to learn to live with my injured and recovering brain and eventually I found a bigger and more whole concept of what it means to be to be me),

I lost my ability to do economics which I loved, and which I had invested many years training to be, so I had to learn how to do the things I could still do that I loved and do other things I loved and relearn what I could,

I lost my income so I had to learn to meet my needs with less income and less abilities to to provide for myself,

I lost control of my life so I had to learn to live life differently until I regained some control of the direction of my life,

I lost my athleticism and had to learn to rebuild those abilities,

I lost many of my friends so I found new ones and had deeper relationships with those who remained,

I lost my ability to be understood so I had to learn improved ways to be understood,

I lost my ability to think and so I had to learn to use others thinking to help me think and learn to use more of my senses as well as my brain,

I lost my life as I knew it but became a wife to Michael and a mother to Daniel,

And I lost many other things as well and have worked to regain what I could and be comfortable with what I haven’t yet regained.

Wow, what an interesting way to look at my journey.  Thank you Eli!

And the question of what motivated me to want to get better was something I hadn’t really considered either.

The short answer, which is what I said to Eli, more or less, is that its painful and depressing to live with all the limitations to life that dealing with a brain injury brings and to be so dependent on others after one has experienced life and the freedoms and responsibilities of being an adult.

To be asked the question of motivation suggests that there was an alternative.

The alternative was to not get better.

And I must say, I never once considered not getting better to be an option.   There was a choice.

I was depressed at times.

I was down.    I felt suicidal at times.

I did not know how to get better often (sometimes on an hourly basis) and needed a lot of help learning how to get better.

But I never, ever considered the alternative of not trying to get better.  It was a choice not worth making.

I am not quite sure why that revelation is so meaningful for me right now.

It just is!

And telling my story, helps me see my journey differently.

Thank you Eli!

Telling our stories, when we can, helps us with new perspectives on our journeys.

What losses have you had after your injury?

Have there been abilities or functioning or meaningfulness that you have regained with time?

What motivates you to get better?

Have you tried telling your story?

 

 

 

Read More - Why Telling Our Stories Matters — Part 1