Author: aforrest

Re-focusing and binocular vision

aforrest 1 Comment

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.

Yahoo!

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And now a summer cold

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I have been writing about recovering from a setback.   The positive side of this setback is that I have many tools from life experience after concussion and from rehabilitation (when I finally got there) to deal with my setback.

This week, I came down with bad summer cold.   It started with a sore throat.  I thought it was one more thing that was part of the setback.  And then it went to my head and my head started being congested.   By Sunday morning I was miserable.  I wanted to take my son to Church anyway.   Church is part of our routine, and when I am off routine because I am sick, its harder on him.  I have learned from experience that it will be better for me health wize to push a little harder, so that he’s on his routine.  So we went to Church.

What I didn’t expect was to find out that other mom’s had been sick from something that started as a sore throat and ended as a bad summer cold.  They said the sickness lasted for five days.  Another mom told me that it had become pneumonia for her and for 4 of 5 of her friends.

I came home armed with information for my husband.   I had a cold that might get worse.  I would need his support to rest, I would see the doctor on Monday. If I had what was going around, it might last as long as 5 days.   5 more days!   Man am I tired from compensating around my setback and feeling my grief.  Now this!

But the choice was accept it and deal with it well, or not.

And its brought me to my knees.   Chills, Fatigue, Fuzziness in the head, congestion, the works.

Seeing the doctor was incredibly validating.

Yes, I had whats going around,

yes, it was in my chest and had become bronchitis,

yes, it was long lasting,

yes, I was doing all the right things,

yes, I was getting better on my own (from sleeping and resting and limiting my activities further than previously including cognitive rest), and

yes, if it lasted much longer then it was bacterial and not viral and to take the medicine he prescribed.

It was so good to see him and be validated and told more about my path and what to expect and what others around me could expect.

The funny observation that I have to make here about having this bad cold is the following.

Everyone understands what a setback a bad cold can be both in terms of energy, time and in terms of head fuzziness.

So everyone around me was very supportive.   People helped with my son, my husband really leaned in more than he already had been doing, and I could get empathy and support easily in conversation with friends and strangers. I could use short hand about what was wrong and they got it. People gave me leeway and wished me well.

So even though I had an awful cold and even though I had been needing to rest for 6 months, I was actually able to relax more into getting well.   It was what it was and I got it and they got it.

So different from my experience of my setback caused by my dental appointment.  Where no matter how well I explain what my head is doing as a result of the sleeplessness and headaches, its so far out of people’s reference that they often look quizzical.   Not that I would have understood it either if I hadn’t lived it!

As I was getting better from the cold but head still fuzzy from the cold and from the setback and probably some combination of both, I did something that was really funny if you think about it.   I thought I would make myself a smoothie and I used a metal spoon to get peanut butter out of the peanut butter jar.  My brain wasn’t working so I am not even sure my thought process would have gotten me to a wooden spoon, I just did what I needed to do to get the peanut butter out of the jar.

And then I left the spoon in the high speed blender because the peanut butter wouldn’t come off it.  And I made the mental note that I needed to find something to get the peanut butter off the spoon.   My head was fuzzy and perhaps I got distracted or perhaps my executive functioning skills were worse since my brain was fuzzy or perhaps I couldn’t focus or concentrate or compensate around my attention issues like I normally do.  Who knows?

But I do remember later, seeing the mental spoon in the blender and thinking I need to do something about that.   I added frozen blueberries and some very frozen broccoli.  And then I put the top on the blender and pushed the button.

You might be thinking that there would be a noise when the high speed blender met the metal spoon.  And there was!

But my brain was fuzzy.  I did react to the noise.   I had forgotten what my eyes had told me about the need to pull the metal spoon out, or perhaps the signals in my brain were so loud and no executive was acting to regulate them as an unfuzzy, uncompromised brain would do automatically.

In response to increase noise, I actually turned up the speed of the blender.   I thought the noise was coming from over frozen broccoli, and surely higher power would help.

And, when that didn’t work, I tried turning up the blender for longer!

When that didn’t work, my frustration led me to decide I just wouldn’t have a blended up smoothie.

So I took off the blender top.  And found a very mangled spoon.  I also discovered that my high speed blender blades were mangled too, but hadn’t lost the toussle completely.

I poured out the smoothie, decided to throw away the spoon and wrote a gentle not to put in the blender that I had mistakenly “hurt” the blades.

Being gentle on myself seemed to be the most important thing to do right then.

And then I went back to bed to try to get better.

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Emotion affects cognition

aforrest Leave a comment

I am still recovering from the setback I had following my dental appointment.   Its been a tough week, partially because this setback has been going on since June 2, so almost 6 weeks now, and that means that I am tired of being outside my routine, and those around me are also!   I was ready to be back to my baseline weeks ago.

Its also been a tough week because I have been feeling alot of grief because of two recent deaths.   What I did not know when I first had my injury, and what I was taught in rehab once I finally got it, is how much emotions affect one’s ability to think.  With an injured brain, I have learned many skills around feeling my emotions and understanding how they will impact my injury.   I have learned many coping strategies.

In my case, it is my grief this week (and last) that is making my brain functioning more difficult for me.  However, both depression and anxiety are secondary responses to brain injury in my case and I have been having to cope with these as part of my setback.   I have learned that these secondary emotions of depression and anxiety that go hand in hand with reduced cognition affect my ability to think and use my cognitive skills of attention, memory, planning and executive functioning.

On Sunday night, I learned that my high school friend’s Dad passed away and that his memorial service was on Monday.   I wanted to go and I was the only member of my family who could attend.   My family and my friend’s family spent alot of time together because of my friendship but also because my brother was the same age as my friends brother and our mom’s became close also.  When my mom became sick with cancer, my friend’s family was a vital part of our support network.   In addition, my friend’s Dad was a doctor and I had gone to see him for medical advice (and shots!) for traveling to Peru when I was younger, so I knew him not only as a Dad but also in his profession.

I have also been grieving for a young woman, Ann Zeis, who I have written about on my blog.   Sadly, she passed away over the 4th of July and her family and friends reached out to let me know.   Ann was helping me on my blog, and had inspired me tremendously as we had common interests.  I am going to write a special separate blog post on her inspiration in my life tomorrow.  Ann died in San Francisco where she lived, so I have been struggling with the profound loss of her life from afar.

I attended the memorial service for my friend’s father which was beautiful and reminded me of many times in my life that I spent with my friend’s family.   I went to talk with my friend afterwards.   I mistakenly thought that the handsome man standing next to her was her brother, who like I said, I knew well in high school.  We had about a 5 minute conversation the three of us.   I then said that I had a doctor in the same building where my friend’s brother works.   Since the person I was talking with wasn’t who my friend’s brother, and in fact lived in Houston not Austin, and was someone I went to high school, he retorted his surprise that I would have a doctor in his building in downtown Houston.  I realized at that point that I was confused.

I laughed at myself.   My friend later told me how well I dealt with the situation–that laughing was just a great way to deal with it.   It has taken years to learn to laugh at myself when my brain just isn’t quite there.  Its taken years to be flexible and give my brain space when it needs it.   This setback–and the increased confusion and cognitive deficits that it has brought–has really made me have to draw on these coping skills.  Its also made me appreciate that although I did not have these skills when I first needed them after my injury, I have them now.   And I need them to make this setback as short as possible and I have incorporated them in my everyday life so they help me in my daily life too.

Years ago when I spoke for Dr Paul Avarich’s class at Eastern Virginia Medical School in Norfolk, Virginia, it was my laugh that Dr Avarich wanted his medical students to appreciate.   Dr Avarich is a neuroscientist by training and he taught a first year class on neuroscience to his medical students.  I had met him when he did lectures about neuroplasticity at an annual conference at Williamsburg.  I wanted to know as much about neuroplasticity as possible because I wanted to keep getting better.  Years later, I traveled down to speak to his class.  And he pointed out to his students that being able to laugh when I made mistakes or when I did not know what to say (which was often following my brain injury) was a tremendous coping skill.   I now have a deep belly laugh and, as he pointed out, it really lightens up a situation.

I have counseled many after brain injury that letting go of situations where the brain isn’t working and allowing it to be okay that one’s brain is doing what it is doing, will help make life easier after injury.   I know now that my brain being confused or doing what it is doing is not “me”, its just my brain not feeling so well.  I also know that my brain (functioning) will get better the less feelings that I attach to my brain being confused.   It is what it is.   And that I will be able to think better the more that I take it “in stride”.

So that is the challenge of this week.  Dealing with my grief for the death of two lovely human beings who have contributed greatly to my life and allowing myself to feel my feelings of grief.

And at the same time deal with the effect that my grief is having on my ability to recover after my setback.

Its okay.  I need to feel my grief, and feeling my grief, although it may temporarily increase the difficulty of dealing with my setback, is what it is.  All that I can bring to this process is the awareness that I now have about what’s happening with my brain.  And at least I have that, now!

I need to get off the computer so I will publish this as is.  When I am better, I expect to come back to these posts and edit them, but for now, they will have to be as they are.

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Being gentle with myself

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

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

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

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

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

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

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

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

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

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

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

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

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

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Better but not completely back and Happy 4th

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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!

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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.

 

Read More - On the mend, at last!

Staying Afloat–Part 3

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Wow-I am still working hard to return to my baseline before my Dentist’s appointment.   Its going on 20 days now.

Wow, that has been a long time.

I don’t want to stay on the computer for more than 20 minutes, as I know the computer is not harder on my eyes and can wake me up and since I am having sleep issues still, I want to be firm on observing that.

So I am going to make this post short.

I am really thankful for all I have learned in rehab to help me manage this setback.

I am also really thankful for the doctors that I have who are helping me with it.

I have realized on my own this week that I need to be writing a sleep diary, so I am doing that.

Here the big points of what’s happening.

I got my headaches under control.

So it was lack of sleep (from waking up in the morning) that was the issue and subtle but increasing cognitive issues coming from not being able to get quality sleep.

I did a sleep study last week (that was luckily already scheduled) and will be able to see what issues can be understood from that once the study is interpreted.

I have made appointments to see my doctors here and in the meantime am trying some home remedies based on the Chinese medical notion of which organs are active at which time in the early morning.   More on that later.

On Tuesday, I was thoroughly bored, because I have had to disengage from my normal life so much.

I took boredom as a good sign.  I was out of pain.   I started trying to plan ahead.    A doctor reminded me that I needed to take my health issues first and to not jump the gun on getting back to the baseline.   Its a huge temptation in the face of uncertainty to want to plan as though everything will be fine soon, but can also be a trap.  I have learned that healing is not a straight line upward.

I started planning more engagement with people which was helpful.

I felt pretty frustrated on Wednesday as I wanted to get well faster.  Each day I was getting more sleep and waking up later, but still waking up in the morning.

Thursday, I woke up alittle down as my waking up moved from waking up later to waking up earlier.

I had to remind myself that I didn’t really know if that was better or worse.

The last two days I have appeared to feel more rested even though I am waking up still twice in the morning and at earlier times.

Like I said, I am really grateful that I can articulate what’s happening to me so much better than I did previously.

I have the vocabulary to talk about what’s happening and the ability to dig it out of my memory so that I can talk about it.  These are gifts of rehab and my public speaking.

And I have a lot more support of what I am going through because I can articulate it.  I have support from my husband and close friends and I have support from other moms, who get that not being able to function very well affects my ability to be a mother.

I know I need to be more concrete, but will do that when I feel better.    And I realized this week that this experience is useful for thinking about what its like for people with unidentified TBI who don’t have the support of doctors or health professionals or the vocabulary or the social supports that they need to get through a concussion that isn’t healing itself.

Its also a reminder that I know that I will come out of this, I just don’t know when.   I know that because of my experiences with my recovery.   I did not know that when I first had my concussion.   And I heard from many professionals that I would not get better of I wasn’t better in two years, so I had a sense of a deadline that I was not getting appropriate treatment to meet.   So I am glad to know that I will come out of this and that I just need to use my tools and my resources and communicate as best I can and take care of myself.   I don’t know when I will get better, so I need to manage that uncertainty, but I know that I will.

 

 

 

Read More - Staying Afloat–Part 3

Staying afloat — Part 2

aforrest Leave a comment

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

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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

aforrest Leave a comment

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