Yeah, it's been some years

I am not who I was.
I am not the same.

I am working now.
I am in a whole different space now.

It feels good.

sapphoq healing tbi

Being in Charge of My Own Rehab

     Early on in the days after my accident, I found the tbi chatroom.  It was a sanctuary for me where I could communicate with other survivors.  I learned stuff about how to cope with my brain damage and how to get on with life.  One of the best things I learned there was that I have to be in charge of my own rehab.

     I got no official cognitive treatment for my brain injury.  I was in the chatroom one night bemoaning my fate when someone spoke up and told me this: You have to be in charge of your own rehab.

               You have to be in charge of your own rehab.

     This simple truism frightened me.  With trepidation, I slowly experimented with being in charge of my own rehab.  What did that mean for me?

     Being in charge of my own rehab meant that I had to find the people who were willing to steer me towards things I could do on my own to exercise my brain.  Someone in the chatroom recommended playing brain games on the computer designed for kids.  I did.  Someone else talked about an e-group on Yahoo for survivors.  I did that too-- until I got kicked out for refusing to change my email-- and that was how I re-learned how to write sentences that made sense to others.  A third suggested a specific puzzle game.  I went out and bought that. 

     I learned how to carry a notebook and a schedule, how to research information and evaluate it, how to replace my a-motivational problems with motor-vation.  I exercised.  I fought with my natural tendency to consume way too much sugar-- something I still wrestle with now-- and forced myself to rest when I was fatigued.  I learned that I needed to find a balance between rest and challenging myself to do something new or hard or strenuous.  I joined a couple of t.b.i. support groups.  I consented to the use of a cane for long walks and in the winter.  I fell.  I got up.  My balance improved and I fell less often.  I understood that the professionals who said, "No major improvement after the first year" or "We can't fix this" were well-intentioned but wrong.

     I am not the same person that I used to be before my accident.  I would have been better off in many ways had it never happened.  But it did happen.  I have to deal with reality rather than a world of make-believe.  My brain is not as effective as it used to be.  Aphasia to a writer is a special form of hell.  And yet, I continue to improve.  I keep striving.

     Ten years out and I am still working my brain.  I am still being in charge of my own rehab.  I hope that you are also in charge of your own rehab regardless of how much or how little t.b.i.-specific treatment you are getting or not getting and regardless of what the well-meaning helpers say about your limitations.

sapphoq healing t.b.i. says:  It takes courage to dream new dreams.   

  

Working on my Visual Perception Problems

My traumatic brain injury left me with some rather outstanding perception problems.  Because I have diagnosed permanent double vision in one eye, I have been treated to the sight of folks with two heads, four arms, and two torsos which extend into one set of hips and two legs casually jogging in my neighborhood.  Because I have been diagnosed with ocular-motor dysfunction and a visual accommodation disorder, objects and people appear as having ghost lines around them, especially when fatigued and my brain is too tired to block those ghost lines.  (And let's not forget the photophobia which is responsible for me limiting my driving at night to "only local and only when not tired."  And my fatigue from dealing with all of this which led me recently to switch to an e-reader which is set to make reading easier for me).  


I know that first paragraph sounds like I am whining.  But really, I am not whining.  I want to tell you about Google Sketch-Up®.  Sketch-Up® is a three-d modeling program that is available at http://sketchup.google.com/download/ as freeware.  [If someone is a professional and wants more bells and whistles, they can buy a professional version from Trimble].  I like three dimensional stuffs and I also like animation.  I've been endeavoring for some time to use DAS®, Bryce®, Blender®, and Hexagon II® and I've had no success to speak of.  [Those four programs were all available as free legal downloads a couple of months ago from their company's website.  I believe the special offer may have ended.  At any rate, I got in on it the very last day].  Those programs were too hard for me to learn at the present time.  One night I happened upon Sketch-Up® and promptly downloaded the free version.  

In short order, I found that I was able to produce rectangles, circles and 3d text.  [If you want to see a few of the things I've made, google "warehouse lovemakesafamily" to find some examples that I've uploaded to Google Warehouse®].  After watching a few free tutorial videos,  I went on to make several skyboxes, some other shapes, and a box with a chaffeured lid.  As I continue to work with my digital camera and computer art, building in Second Life®, and Google Sketch-Up® I've noted some improvement in the way that my eyes work together when I practice  my vision therapy exercises.  This improvement I must still label as "subjective" since it has yet to be confirmed by my t.b.i. eye doc. 

Sorry to the dedicated optimists who want me to say that my vision problems are totally abated, cured, or not permanent after all.  It simply ain't so.  I have to deal with my situation as it is and not engage in dreams of being "almost or exactly 100%" of who I was before my accident.  I am very fortunate to be alive.  I would have been better off-- certainly financially and in some other ways as well-- had the motor vehicle accident not happened.  But things are what they are.  I continue to deal with Briella [my still brilliant brain, just a bit sideways] on a daily basis.  When I think back to how far I've come from the early days of sleeping twenty-two hours every twenty-four, relearning on the computer how to write a complete and organized sentence, playing Tetris® because other T.B.I.ers told me it would "help" with my eye-hand coordination, and myriad discussions about the names of the seven dwarves, I smile broadly and say to myself, "Yup I done good.  Now I gotta keep striving."

sapphoq healing t.b.i.

Unsticking

"This is the year that I will get un-stuck," I told myself at the beginning of 2009. And I am indeed getting un-stuck. Today I am celebrating 29 years of freedom from active drug addiction. [Yes, I got clean before my traumatic brain injury. Ironically, the man driving the vehicle which had run my car into the side of a house was high on marijuana].

Getting un-stuck for me has been and continues to be a process. I am healing from the pain of losing my career in human services as a direct result of my brain injury, very slowly letting go of my obsession with the decision of the agency that I was working for at the time not to take me back in any capacity, addressing my negativistic thoughts and judgment of others, and de-cluttering with pizazz.

Organization was never a strong suit for me. In the before days-- back when my brain was still a regular brain-- I was not a great housekeeper. Since my brain injury however, my difficulties with organization, sticking to any sort of cleaning schedule or chart, and being able to pare down my possessions accelerated. With gentle encouragement by my true friends, I have begun to be able to do the things that I need to do in order to keep my home livable. I find myself discarding stuff that I no longer need or want to hold on to and that feels good. Real good. I still have to take frequent breaks due to t.b.i.-induced fatigue. Now, after I rest, I get up again. "I am getting un-stuck," I tell myself. "After I clean this or sort though that, I will go to the local diner for coffee." And it is working.

When my dad moved up here for a few months last year, in spite of his dementia he was able to get me to clean. We cleaned for an hour every weekday morning before going out for breakfast. Keeping up with housework became infused with emotions. Once dad left, I lapsed backwards into apathy and disinterest.

At a recent t.b.i. support group, I decided to try to motivate myself with the same thing that worked when my dad was visiting. Clean some, then coffee (or something social). The charts (I can make beautiful charts) of what days to de-clutter and clean which parts of the house didn't work. Similar I suppose to my inability to read a crochet pattern for five years after my t.b.i. I could write down the directions and the steps, I could read (and did) a ton of books and websites (including the flylady stuff) about how to whip the household into shape, I could create my own crochet patterns. But I could not translate planning into doing nor symbols into crocheted cotton washcloths. I can follow a crochet pattern now but progress is halting. It is still easier for me to freelance. In finding a new rhythm, I am a creator and not a follower.

One thing that is easier now is throwing out stuff. I no longer remember much of why I acquired clothing, books, artwork, knick-knacks. The false chains of sentimentality lay no claim on me. Because I do not remember why I am holding on to this or that, I can ask myself if the item is something that I love or need. And so I toss stuff merrily into the waiting garbage bag or donation box. I am not bound to hold on to something for the rest of my life because some relative gave it to me. I know other clutterers, messies, and pack rats have real problems with being able to get rid of things (and I did too in the past) due to sentimentalism. I appreciate being able to breathe. De-cluttering is a joy for me today rather than a torment. I am de-cluttering one corner of one room at a time. Several rooms are now neat and I am maintaining them.

I have also returned to blogging. Writing is my first love. I have dreams-- serious dreams. As with the housework thing, I am finding my way through the twisted and broken neurons in my brain to a new rhythm. I am looking forward to more of this un-sticking process. It is a process, a journey into healing.

sapphoq healing t.b.i.