A Better Strategy for the Home Stretch

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

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

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

That seems obvious now that I write it.

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

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

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

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

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

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

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

I am not my old me!

They say that old habit die hard.

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

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

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

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

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

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

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

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

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

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

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

#3 Prioritize safety first.

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

#4  Be gentle with myself.

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

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

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

How do they work for you?

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

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


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The Home Stretch

I had the intuition that I should title my blog post “The Home Stretch” while I was meditating.

Because my brain is still a little more groggy from all that I have been through the last 2 and 1/2 months, I had to think a little more about what the term sporting event the “Home Stretch” came from.  At first I thought it was a baseball analogy about the run from Third to Home Base.

As I reflected on it, I realized that I have heard it used that way by the announcer at baseball games.  And then I realized that the idiom comes from a horse race.  In fact, when I looked it up in Merriam Webster, I found that the first definition is “the part of a racecourse between the last turn and the winning post” and the second definition is “the final stage”.

This week, upon much reflection, I realize that I have turned the corner on the last turn and I am in the home stretch of getting back to my baseline before my dental appointment.

As I thought about what goes on in a horse race between the last turn and the winning post, I realized that there is a lot of strategy that goes on in that final distance.  I have seen many races (on television) where the horse that wins the race is not the horse that is ahead at the turn, although sometimes the horse that is ahead at the turn wins.  In a horse race, it is speed that wins, but it is also strategy.

What reflecting on what happens in a horse race means to me now is that I have to be careful and conscious about my home stretch.   And I have to use all my strategies to get from where I am now (roughly 80% of my previous baseline) to where I want to go (back to the 100%) in order to get to the finish line (where I want to go).  And in my case, I don’t want to leave all my energy on the field, like the horses and riders do.  I want to be able to keep going and building after I get to back to where I was before all this happened. In my case, its not how fast I cover this distance to 100%!  Its about doing the things that will get me there and which I can maintain after I get there.

In addition, I want to get back to 100% of where I was, and possibly a bit better than 100%.  (I talk about better than 100% of my baseline in my blog post called Focusing and Refocusing). And, I want to be able to keep going once I get back to where my old “new normal” was.   I want to keep my new new normal evolving, in other words the benefits of neuroplasticity.

Now, what I have learned from my experience about setbacks is that, if I try to get down the home stretch as fast as possible, I may never get back to 100% (of my baseline)!  

And I won’t be able to sustain that 100% once I get there.  

And, I won’t get to more than 100% which would be the best outcome and what I am hoping for.

When I say I have learned that going as fast as I can on the homestretch does not work from experience, I mean that the temptation is to try to race there as fast as I can! I am tired of having to compensate around my brain not working as well as it did.  I am tired of telling others that my brain is still not working well as well as it did.  My husband can see it, and my close friends who listen carefully can either see it or hear it.   But lets face it, most others who don’t know brain injury cannot.   And even if they could, I am tired of having to work further around my work arounds!  I am tired of taking cognitive rest.   I am tired of telling people I haven’t been able to do much this summer and thus have not gotten to all the things that I thought I would get to this summer including things I may have told them I would get done for them.  I am just plain tired of all this. And as an over achiever prior to my brain injury, I learned to push hard in the home stretch.  I learned it so well it became habit.

You see, I have learned over and over that my habit of pushing hard before my brain injury does not work.   So pushing harder in the home stretch, which was my pre-injury habit, also won’t work.

I have seen many others, not just myself, push hard to get through a concussion.  It doesn’t work. I have to consciously unlearn all my habits of wanting to be done with this last stretch.

So what is my strategy for this particular home stretch going to be?

The first step to changing this strategy is to identify the habitual problem of wanting to race through it.

I have done that.

The second step is to figure out how to be conscious about it.

I have begun to become more conscious about it by writing about it.  

That is one thing I love about writing my blog. Writing forces me to reflect and think about what is going on for me and how I am handling it this time.  

And that reflection sometimes leads me to different answers than I had when I started writing.

And in reflecting and writing, I have become more conscious that I have been at this (or a similar) juncture before, many times in fact in my recovery.

As I write, I am beginning to remember that I have even discussed this very issue before.   I now remember a conversation that I had with Dr Lebedun, years ago.   Dr Lebedun is a very bright and intuitive Neuropyschologist that I found when I lived in Northern Virginia.   I now recall that “holding back my inner over achiever” should be a part of my strategy now.

But its not all of my strategy.

I need to be conscious about figuring out my strategy and using what I have learned prreviously.

I need to make a “plan for success” about how I will approach it.  By the way, I attribute the concept of making a “plan for success” for some work I have been reading by Dr Larry Schutz. (More on his work later but here are the resources http://givebackorlando.com/hepusef/hepindex.html)

How do you approach the home stretch — whether it be back to your baseline before a concussion or back to a “new normal” baseline with persistent symptoms following a concussion.

Have you approached a home stretch in a way that you wouldn’t try again?

What happened?

What are your best strategies for the homestretch?

What has happened for you when you used them?

Who taught you or how did you learn your best strategies for the homestretch?

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Useful information

This week has been a little like last week.

I am still struggling with not being 100 % back to where I was before my dental appointment that caused my setback 9 weeks or so ago.

I am doing what I can to keep my mood up.  Keeping my mood up helps me tolerate dealing with the symptoms of sleep issues and my head working more poorly than I have been used to.  Keeping my mood up does not solve the problem, but it does keep me more level headed and the more level headed I am about my brain working more poorly, the more I can take what my brain is doing (or not doing) in stride.  The more I can laugh at some of my foibles and the more I can help others understand that what they are seeing is indeed what I am experiencing.  Or deal with it when they cannot see that anything is different for me because they either don’t know what to look for or don’t know me well enough.

My husband was telling me this week that he is having a tough time understanding me.  I have come to appreciate that he can see the decline in my functioning quite acutely and to listen to him (rather than get defensive) for clues as to how he sees it.   When I listen to how he sees it without being defensive, we can work with each other to help both of us.  When I cannot listen to him about it, my poorer functioning can separate us.  I can feel like he doesn’t understand how hard it is for me or how much I am doing to try to make it better.   One his side, when we get separated around my brain injury related issues, he says that he feels that I am not appreciating how hard it is for him.   Its funny because we have had to learn how to not let our adorable son separate us on issues.  You would think that would help us, but it is much harder to not let my injury separate us.

My husband told me that it’s as if my sentences are thoughts in process rather than sentences.  After I thought about what he told me carefully, I realized he was telling me his side of exactly what I feel.  He was saying it in his words.  What I realized from talking with his is that my slower processing right now is showing up in my conversation.  I cannot process what’s happening around me fast enough.  Which means that I cannot pull it together to communicate efficiently or effectively to others around me, even though I know I am not doing well and I want to be able to communicate that.  Of course, this is a recipe for frustration above and beyond the frustration that I am already feeling because my brain isn’t working how I am used to it working.

It is useful to know his point of view.  I am not sure I can do that much to help it, but its good to understand what he’s seeing.

It is useful to know from him that often my paragraphs are not started with a topic sentence but are just a collection of sentences in which I hope that I will learn the topic sentence by getting my thoughts out in front of others.   This is occurring more often after the setback started.  And it does help to know that my husband is experiencing it because it reminds me to try to remember to start with a topic sentence when possible when conversing with others.  It also tells me that if people are not understanding me the first time I try to tell them something, that I should start with a topic sentence the second time I try to explain my thoughts to them to get get my point across.

Here are some of the things I did this week to move my setback recovery forward.

I made an appointment with my neurologist, Dr Hill.  Since I have plateaued in terms of getting back to my 100%, I figure he may have some suggestions.  Its been over a month since I have seen him last and I need to get his input on next steps.

I also made an appointment with Russ Adams, a mental health professional, who knows brain injury.  I had gone to see Russ Adams over ten years ago when I originally did rehabilitation here in Austin.  He already knows me because we worked together before.   He worked at St Davids Rehabilitation Hospital when I saw him last and he is familiar with the difficulty that people with brain injury had in getting the resources they needed and the journey that they travel to get better.

I also got some useful information this week that was very helpful for lining up my next steps to try to get the resources I needed to try to get me better.   Over the past couple of weeks, I had reached out to Dr Andrea Laborde and told her a little about what is going on in my life.   Dr Laborde is currently working at a concussion clinic in Australia where they take concussion recovery for civilians very seriously.   I was introduced to Dr Laborde by Ann Marie McLaughlin (and other folks) from ReMed, a forwarding-thinking Rehabilitation Company located in the Philadelphia area.  Dr LaBorde and I did a talk on mild TBI issues in about 2005.   More on this later.   Dr Laborde and I also worked on the Ontaria Neurotrauma Foundation guidelines on persistent symptoms following Mild Traumatic Brain Injury www.onf.org.   I have written about this work in previous posts.  I wanted to get Dr Laborde’s perspective on my setback.

Dr Laborde said brain injuries cannot get worse, but it is well known that the symptoms can reemerge after an external event after they have been managed.  Andrea told me that the medical term for the problem that I am having (which I have been calling a setback) is recrudescence.  She told me that at her clinic they treat a recrudescence by treating the symptoms.  In my case, that would mean treating the sleep issues, cognitive deficits, vestibular and/or vision issues.   The truth is that I have begun to treat some of my symptoms by adopting some stricter strategies on cognitive rest with the computer and with my mental effort. From her email, I realized that being as comprehensive about adopting stricter strategies, with the help of professionals may behoove me.  I will talk with my neurologist about this when I see him this week.

The other thing that happened somewhat serendipitously this week was that my former vision therapy doctor, Dr Amiel Franke, called me on Monday to ask a favor.   He is retired and is 90, but he still is very interested in what is happening with his former patients and I had had lunch with him last year if DC.  He asked me how I was doing, and I did not hesitate to tell him about my setback.   His response was, “I know exactly what is wrong with you”.   Now you might think that its hubris that he could diagnose me over the phone, and after telling me what he thought, he did advise me to reach out to my vision therapist here in Austin, Dr Denise Smith, to follow up.   The thing about Dr Franke that I know is that he’s always right.  At least he has always been right in the past, which means I know his batting average is 100% with me so far.

I made an appointment with Dr Smith and I will talk with Dr Hill, my neurologist, about the vision aspect also since he is a neurologist that believes that considering what is going on with the visual system is important in brain injury recovery.

On to next week…

Have you had a reemergence of symptoms after an external event?

What happened?

How was it treated?

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Re-focusing and binocular vision

I see it as my job to get better and I am still working (hard) to get back to my baseline before my dental appointment on June 2.   Its been two months now.   Its been quite a struggle.  I have had to use all my resources and have had to find new resources to help me.   But I am getting there.  I think I am at 80% now, which means that in the past three or four weeks, I have made about a 10% improvement.

I would like for my improvement to go faster.   But realistically, I am grateful for that improvement.

My cold/bronchitis is lingering but almost over.

And I have been noticing that my vision and brain are reorganizing this week.   A visual/brain reorganization is about the best thing that could come of this setback.   Yes, I have felt my vision reorganize, and my brain reorganize.   The reason why I say that that is the best thing that could come out of this setback is because when I experience a re-organization, I know that I will get to a more functioning place with my brain once I get back to where my baseline was.

In other words, I will likely be better than I was before this setback.

Getting to a better place does not mean the setback was “worth” it.  It has been a struggle, to put it lightly.  It has taken all I have to give.   And its not over.

What getting to a better place means is that I have made the most of this period of setback.  In statistics, given that I am having a setback, I have ultimately used it to move forward.

Here are the highlights of what I have done this week to help myself:

I reconnected with my former speech and language therapist, Liz Joiner,  who gave me suggestions including some new resources for visual therapy and how my neurologist, Dr Hill, could help me get to visual therapy resources. Since visual therapy has helped me a lot, and since I am going through a visual reorganization, getting professional help with the next step, is definitely something I should consider.  Of course, they would have to do an evaluation to help the professionals decide if they can help me.

Liz also gave me some suggestions for a therapist who understands brain injury to give me some emotional support through this difficult time and who might be able to give me guidance and connect me with other resources here in Austin.

With the help of talking with others, I realized that the antibiotic I was taking for my bronchitis was wiping me out. So I started taking more probiotics.   That really seemed to help my gut — I could feel the difference.  What I have learned is that there are a lot of receptors in one’s gut.  And I have learned that helping my gut can help reduce some of the confusion in my head that I feel when I am sick and taking antibiotics.

How did I know I have begun having a visual reorganization?  My eye doctor in Washington DC, Dr Franke taught me how to recognize them.  One way that I recognize a reorganization is when I all of a sudden can see depth in a way I could not see it previously.  Its like flowers all of a sudden “pop out” with depth, that I didn’t previously see.

After my brain injury, I had depth perception issues.   What I know now is that I also had less than full monocular vision prior to my injury.  One of the benefits of doing vision therapy after my brain injury is that I have started to get back increased binocular vision and that the increased binocular vision that I am getting will make my vision system better than it was before my injury.

I want to be talking more (in my blog) about the benefits I have gotten from vision therapy in my recovery from brain injury.   For now, I want to say that Dr Susan Barry talks about her experience of getting binocular vision in her book “Fixing my Gaze”.   Dr Barry is a neurobiologist.  She understands the brain and brain development.  She describes getting binocular vision as a journey into seeing in three dimensions, in her book.   Actually, Dr Oliver Sacks first wrote about her journey in The New Yorker Magazine,  He called her “Stereo Sue”.   Dr Sacks was interested in writing about her story because getting binocular vision later in life is something doctors did not used to think that you could do.  And she did it as a result of finding vision therapy and optometrists who knew how to help her.

To finish this post, I also had the insight this week that I needed to let go of all the things I had planned to do in June and July that I have not been able to do so far.  I have been to sick to do them.

One of the things I did this week was start to re-focus on what I need to get done this month before my son’s school starts.   So my re-focus moved to a forward-looking strategy from a catch-up strategy.

And I also consciously worked on rebuilding this week.   I used Andrew Weil’s strategies of improving my surroundings to help lighten my mood and make me smile.  I bought flowers at the store and bought a sage plant with beautiful leaves to put by the sink to remind me of my new increased depth perception.   And I bought basil and made basil pesto which I love.  I started investing in the future, which is a good sign that of recovery for me. There is a point in recovery where I start feeling ready to invest in the future, and I have reached it.  I know that getting to the point of re-focusing and investment is a marker that my recovery is taking hold.

With my new vision for the future, its easier for me to get support for this last phase of my recovery back to or still hopefully surpassing my previous baseline.  Both from the inside and from others.


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Being gentle with myself

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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Better but not completely back and Happy 4th

I am 70% better, but not all the way back to my baseline.

I had good news from talking to my Doctors.

My Neurologist says that if I have gotten 70% back, then the 30% will come.

He told me I am doing all the right things–cognitive rest and physical rest.

He was pleased that I had reached out to my support team and that what I am doing it working.

He did objective test to show me that although I have increased memory and cognitive problems, I can pass his simple cognitive tests.   They are still there!   When he was asking me questions, I remembered all the hard work I had done in rehab to get these back.   And I was thrilled they were still there.

More later.

Happy 4th.

I will continue to rest and get cognitive rest until the other 30% gets back.


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On the mend, at last!

What a week!

I woke up Monday morning with a headache.

Up til Monday, I had been operating under the belief that I was getting better slowly.  I believed that I had gotten my headaches managed again as I was not having them anymore.   And while my sleep patterns weren’t back to my baseline yet, they appeared to be improving.  I was still waking up twice, but I has waking up later and later each morning — from 3ish to after 4 for the first one.   I took these all as good signs of healing compared to the previous couple of days.

Like I said, then, I woke up with a headache.   Getting my child off to a new camp with a headache was more than I could manage emotionally, although I did manage to get him there and get his day started with a successful dropoff eventually.

As I later described it, I think if I had woken up with a headache any other day, it wouldn’t have gotten to me, but to start the week with a headache was just too much.   And while I thought that I was getting better by the end of the previous week, it was clear that I wasn’t and that I needed to re-think the steps I was taking to get myself better.

There is nothing like an acute health crisis to show you exactly where the holes in your medical and rehabilitation and recovery team are!  And I already new that I had not yet managed to develop the support team around my persistent symptoms that I needed here in Austin, even though I have been working hard on that for almost 3 years.

So I reached out to former speech therapist here in Austin to see if she had any suggestions until I was able to see the Sleep Doctor.  I had called the Sleep Doctor’s office previously and they had worked me in for July 1 which was the earliest they could do it.  My Sleep Doctor, Dr Hudson, is a great doctor and thus is in high demand, so its not easy to get in to see him quickly.

My former Speech Therapist responded immediately that she had a handout on brain rest, but was not in her office and she suggested reaching out to someone who was in the office.

I also reached out to a friend who is an MD and is familiar with sleep medicines and brain injury recovery.   She confirmed that many of the medicines can exacerbate the cognitive symptoms.   Since the cognitive increased symptoms that I was having because I was getting poor sleep were really trying to me.  Trying to take the symptoms in stride was wearing me out.  So I was glad to be reminded that these options were a last resort.

In reaching out to others, I remembered that cranial sacral work had helped me in the past and that my former speech therapist had told me that many of her patients got calming results with that.  So years ago I had found the best cranial sacral therapist in town and had indeed gotten alot of relief from this modality over a years period.  So I reached out to him.

The person who had done cranial sacral therapy for me agreed to do some for me even though he was in the process of leaving Austin.

Tuesday I felt better because I had reached out to my network and knew more of my options.

And Wednesday morning, we did a cranial sacral session which helped.  I had more energy afterwards, I felt better and I slept quite differently that night.   The next couple of days, I realized that my cognitive deficits were no longer getting worse each day from unrestful sleep.   That was a huge relief!

I am going to have to explain how it helped and what it did and did not do, but I will wait til next week, since I still am managing how long I stay on the computer.   I am doing minimal editing of this, and will come back to things I have missed in this description when I am back to my baseline.


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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.





Read More - Staying afloat — Part 2

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?



Read More - Staying Afloat

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?

Read More - Compensatory strategies and Deadlines