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.   

  

Lazy

I think I've talked about this one before.  But I will talk about it again anyways.

I used to go to a t.b.i. support group on Saturdays run by one of us.  We used to talk about stuff that got in our way and how to work around that stuff.

One Saturday [or maybe more than one Saturday] I was talking about my laziness.  The survivor-facilitator encouraged me to think of this as something that came out of my brain damage i.e. my messed up neurology.  I rejected this and still do reject this thinking.  Here's why.

If I claim that something is organic and arising from my traumatic brain injury, then I am saying that it cannot be fixed.  That I have to work around it.  I refuse to believe this of my laziness.

I am willing to admit that perhaps the brain injury made my laziness worse, or makes it harder to deal with.  I know I have some problems with initiation now.  That I can identify as being from the brain damage.  I know that I also have brain-related fatigue and that particular ailment called "fibro" as evidenced by all of the trigger points that I have.  Fine.  But laziness as a function of my brain damage? -- no.

My laziness is mine.  I own it.  You will not deprive me of it.  When I say that I am lazy and not "my brain damage causes me to be inert," I am claiming some hope for myself that I can change this.  So yeah, I am lazy.

What do I mean when I say I am lazy? I am lazy about doing housework, throwing out stuff, organizing my belongings. And not lazy? I am not lazy about walking the dog, doing laundry, doing anything on the computer.  In other words, if I like it I will do it.  If it is not interesting, I won't.

I've tried to make charts and todo lists of stuff to do everyday-- like organizing, throwing away papers, and some form of housework.  The end result is that I can make wonderful charts.  I just cannot follow them.  [This may be related to my inability to follow a pattern for crochet but I can make my own patterns].  So the chart thing just isn't working for me at this time.  I've tried "attaching emotion" to the stuff I want to get done, like playing music during housework [suggested in the t.b.i. support group] but I would forget to play the music.  The end result was I didn't get much of any housework done.

I've read in a few places that developing a new habit takes thirty days or something.  The new approach is to take each thing that I want to do and endeavor to do it every weekday.  I've actually had better success with that. 

I am also tapping into my determination.  That same determination that I used in order to learn how to rewrite understandable sentences is still available to me today.  That same determination that drives me to research a story or event or organization is part of me.  That same determination that caused the head of investigations at my own job to refer to me as a bulldog did not die during my car accident.  I know I am determined.  Choosing to use my determination to combat my laziness is working for me.  And that is what I am doing.

Things may be more difficult for me to accomplish at times due to complications from my brain injury.  I do have problems with initiation, organization, and fatigue.  I also have this determination stuff.  If I believe that I am more than my problems, then I can do more than my problems.  I do not have to live like an blob void of all adult responsibility, only doing stuff that I want to do and ignoring the rest.  This is not a fantasy land.  Houses get dirty and disorganized when not taken care of.  Even if I was to hire a housekeeper [again-- I had one for awhile a few summers ago when things were bad], there is still stuff that I have to do.

So I am using my determination in order to conquer my laziness.  And screw the rest.

sapphoq healing t.b.i.

Milestone

I was in recovery from my addictions for many years before the car accident that rendered my brain brilliant but a bit sideways.  It is once again September and thus time for the obligatory post.  I am now thirty two years out from my addiction to drugs including but not limited to the drug alcohol.  I am slightly less than one third of that time away from the day I got my t.b.i.  I have maintained my weight loss for about a year and a half.

I made the sign.  I did not create the font.  The font came in my legal copy of a digital editing program.  I don't care if you download this tag or what you do with it.  Just don't hotlink.  Con respecto, muchas gracias.  sapphoq healing tbi

So yeah.  Happy Birthday to me!

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.

I Am What I Am-- no, not Popeye the Sailor Man

This weekend left me hot as hell and thinking about getting a summer shack up in the Aleutian Islands. The dog would love it up there of that I am sure. However, we are where we are and where we happened to be this weekend was humid as all get out. It was the kind of weather that rose off the sidewalks in a deep haze. One time way back when I was working in a nursing home, I had left some old lady's shoes on the radiator. Big mistake. The soles were melting by time someone else rescued them. It wasn't hot enough here to fry an egg perhaps, but it was probably hot enough to melt the rubber soles off of shoes left on some black tarry street. The kids down the block had gotten one of them pint-sized electric cars and they were cruising over their front lawn. I laughed to see their yellow lab slowly lopping after it, reaching out once every so often to bite the tires.

Yesterday I went to a speaker jam. Those that know me well know that I have been in recovery for a very long time-- in fact more than half my life. Yes I still attend meetings of several twelve step groups on a regular basis. I have been accused of all kinds of crimes related to being anti-12 step groups on the internet because I am a sometimes critic of ways and means and probably because I am a Witch/Atheist/currently a Discordian. (If you don't know what Discordianism is, please google it if you care). Or maybe because I am sometimes a jerk. Whatever. In the blogging world as in real life, that is the risk that one takes when expressing oneself: That sooner or later somebody is going to take exception to one's opinions. Oh well. The price of freedom of speech is one that I am willing to pay.

At any rate, I didn't get to the speaker jam at the beginning but that was alright. I am not a morning person, that is fer sure. So I missed the first two speakers out of ten; and the last one. I was there for seven speakers of varying abilities and stories. One thing became immediately clear to me-- from the women speakers as well as from the men speakers-- and that one thing is that a vast majority of those who spoke yesterday have sex on their minds. I learned quite a bit yesterday. Sex problems don't magically disappear when one gets into recovery. I just wasn't expecting them to be so prevalent in what I heard yesterday. A secondary theme was gambling problems in recovery. I was especially appreciative of that since the last couple of months I have wanted to get high and to gamble. The odd thing about wanting to gamble for me is that gambling was never my thing. It didn't do much for me, I only remember getting one gambling "rush" and that was in a small group of folks from Running Sores who were at the race track. I'd been forced to go to that racetrack under the guise of a manager appreciation party when people were still able to force me to be social in a large group but that is a whole other tale. And not a terribly interesting one at that.

About midway through the afternoon, I noticed that someone (who still works at Running Sores) had entered the room and was sitting not far away from me. She was doing a fairly good imitation of being blind to my presence. That was a pretense that I was content to let be. I really didn't care one way or the other. Or at least I had decided not to care for the moment. A bit later as I got up to leave (before speaker number ten and the clean time countdown), the Running Sores woman had moved and I walked right past her to go outside and to my car. Again, she turned away from me. Several thoughts vied for my attention. One of them was along the lines of, "What the hell. Am I a leper? Is brain damage catching?" Some of the other ones were more sane, or at least more of a rationalizing nature. "I didn't want to talk to you either." "Whatever." And there was the ultra-adult thought which ran, "Hey it's been about four and a half years now. Isn't it time to get over this mental masturbation about Running Sores and how 'cruelly' I was treated? Get on with life already."

The thing is, healing doesn't necessarily happen upon demand. Or there would be bunches of people demanding healing, maybe even curing, and getting it. Emotional healing is not much different from the physical in that regard in my opinion. From past experience after a devastating house fire, I know I have to call each thing/person by name and say what they meant to me before I will be able to let go in a real way. So there is more work to do on that score. It's okay though because I have a way to address it and a support network to help me get through it.

I am most fortunate because my support network is not limited to people in recovery. Like the inane commercial for a credit card with frills says, "I got people." This whole life thing, being a citizen of the universe and all of that, is not a simple matter of us versus them. It is not you and me against the world or people in recovery fighting with the aliens (those without a 12 step program, whether they need to be in some form of recovery or not). Nor is it any faction of the gay/lesbian/bisexual/transsexual/transgendered/intersexed/queer communities against the straights, atheists fighting the Christians or other religious groups, disabled against everyone else. Nor even those of us with atypical neurology slugging it out with the neurotypicals.

I sometimes have to remind myself of these things rather forcefully. I have to remind myself that business is business, period. That although I believe that ninety eight percent of those working in the human services field deserve to be eaten by Baba Yaga, really life cannot be reduced to black and white. Consequently, the woman from Running Sores who was at the same speaker jam that I was at yesterday had the same right to be there that I had. And I had the same right to be there that she had.

The last time I saw her was early on after my accident at the local mall. She had gotten my old job but spared no sympathy for her old boss. Hey, I lived anyway. I could obsess over the lack of support from the folks at Running Sores or I could dwell on the support that I was getting elsewhere. Traumatic brain injury has made obsessions the easier softer way and so in truth, for several years I did ruminate excessively over the idea that I did not get a get well card from the folks at Running Sores. [A friend finally sent me a Get Well card, hoping that would help. It did]. What I got from Running Sores was a form from the safety committee which asked, "How could this accident have been prevented?" I wrote down "Shoot all of the pot smokers who drive." [The man who had hit my car was high]. The lawyer was keeping close tabs on my altered states at that time so he was able to convince me to send all forms to him. Whenever I was asked about some form or other, I learned to say, "The lawyer has it. I can't understand it." That much was true. Filling out any kind of form during the first two years post-accident took about an hour and a half and resulted in colossal headaches. And my "answers" were not coherent. The lawyer put all the forms in the round file and had some assistant or other fill them out only when forced to. That is how lawyers do things.

In truth, although my nemesis was ignoring me at the speaker jam, I really didn't have much to say to her either. What could I have said? Hello, how is work? Lame. Good to see you. It wasn't. You are looking well. Like I care. By the way, yes indeed it is a traumatic brain injury just like I had told you at the mall and I am on disability and I hate VESID sucks. She isn't required to care about any of that in even the most superficial way. Just as I am not required to care about her life either.

Traumatic brain injury is a polite word for brain damage. I am brain-damaged. My life got derailed through no fault of my own (for once) four and a half years ago. And yet. The world didn't stop because my world shattered. Since the accident, I've had to deal with lots of stuff. I am not dead. I am very much alive, still breathing. Breathing is a definite plus. I can let the shoes stay on the radiator, their soles melting down into the heat. Or I can take the shoes off of the radiator, open the window to let the stench of burning rubber out, and get on with living the best way I know how.

The metaphor with the shoes bothers me. Like many metaphors that I hear in the rooms of recovery, there is no allowance for more than two ways. Either we are going forwards or we are going backwards. We are progressing in our recovery or we are headed for a fall. We are on g-d's side or we aren't. We are part of the problem or we are part of the solution. I have problems with the whole good-evil dichotomy. For quite awhile now, I've suspected it is just a neat over-simplistic way of saying good g-d-fearing folks to the right and the rest of the infidels to the left. Those of you who know the significance of the numbers 23 and 5 will understand.

The other thing that bothers me is the blending. The whole "all religions are different ways of going up the same mountain." Or "all religions are just different ways of knowing the same g-d." Or, even worse, "all religions kind of meld together." Uh, no they don't. All of the religions of the world cannot even agree on the basics. Christians say Jesus is the Son of g-d. Muslims declare that Allah didn't have a son of any sort. Jews say the Messiah didn't come yet. The Hindus and the Muslims have been fighting each other in India for years and years. Several Muslim factions are also at war. The Koran has produced believers who take on the admonishment to "Kill the infidels" quite literally. Other believers found their ways around that. The Bible has been used to justify slavery, separation of the races, oppression of women and the disabled and those of us who are not straight. And there are believers who find their way around those verses as well. The Buddhists are actually atheistic in their own right with a twist. I think I will read some more of that Richard Dawkins book along with some of the others ones laying around here. (More book reviews coming up by next week at http://sapphoqreviews.blogspot.com). All religions and cultures and peoples are not equally good nor do they all hold equal value to the survival of the humans and other stuff. Call me politically incorrect. I consider that to be a compliment.

I think about the stuff we have lost and the stuff we are losing to political correctness. Like the pot smokers who drive, lets go shoot all of the comedians. Follow that up with the hanging of bloggers and mediacs, gassing of politicians and educators. Oh, but not just the liberals who in my mind are responsible for things like the renaming of the Sambo's restaurants. Let's rid the world of the conservatives too who don't agree with the libs. Let the dems and the pubs drown together as they debate things like a New York State Law that officially makes it illegal to sell a cow which has tuberculosis. If we get rid of everyone who doesn't agree with everyone else, there would be no one left. I have gone off on another flight of fancy. Drat this brain damage.

Drat the Brain Injury Association of the United States of America which had green rubberized bracelets made up. I don't know how or why someone decided that green is the color of brain injury. Myself, I would have opted for a gray/black combination. I would not wear the bracelet when it first came out nor will I now. The bracelet says, "Mind Matters." Screw that. Scientists cannot agree on whether the mind exists at all. Oh it may and it may or may not be part of or the same as the brain or separate from the brain. Or the mind might me a figment of the imagination. No one asked me my opinion when it was time to decide what color to use or what slogan to put on the stupid rubber bracelet. My slogan, "BRAINS matter." My brain matters. The same political correctness that causes "traumatic brain injury" to be preferable to the words "brain damage," is that the reason behind picking the non-specific "mind" over the very specific "brain?"

English does not have a verb to distinguish a temporary state of being from the essence of being. In Spanish, a language whose beauty captivates me, there are two verbs that translate into the English "to be." There is ser-- a state of being which is not intrinsic to the organism. And there is estar which describes the essence of being. Thus, when I straightforwardly say at to a group of people in recovery that I was a failure at teaching I have no way of indicating that I am not claiming that failure permeates and defines me. Along comes the rationalizations. Someone's g-d didn't want them to be a famous fill-in-the-prestigious-career-of-choice. Someone else informs a small group of folks within my earshot that her definition of failure is different than mine. I can't help but wonder if this unwillingness to admit that because some of us failed at some undertakings that means that we were failures at those undertakings is a leftover from the rah-rah cheerleader self-esteem school of thought. Objectivism certainly has its' foes these days from schoolrooms to boardrooms. I owe a debt to objectivism. Objectivism actually helped me to separate my rationalizations from reality. I learned that yes indeed we are not born equal in terms of ability. I learned through objectivism to take responsibility for my actions, to examine how I contributed to my failures. I cannot push my failure at teaching in the classroom off on some higher power or even on some lower power. It was my own internal inability to ask for help that caused my downfall. So yes I failed at teaching. I was a failure as a teacher in the classroom. Those of you who protest that have never seen me with a group of children as I struggled with the expectation that I keep some sort of order and impose some discipline. I was a failure at teaching-- ser. I am not the totality of failure-- estar.

Even when my brain damage a.k.a. traumatic brain injury has made communication difficult, I know that for example the failure of VESID sucks to adequately serve me is also partially my failure as well. The folks at Running Sores were conducting business as usual after my accident, probably in accordance with legal advice. Brain injuries are expensive. Their insurance company didn't want to get stuck with my medical bills just as my automobile insurance company didn't want to get stuck with my medical bills. Business is business. I don't have to personalize any of it. I didn't understand that back in the early days after my accident when I was sleeping for twenty hours a day. I can understand it now. I am not who I used to be. Even my taste in reading material has changed. I am not who I was going to be-- would have been today if the accident hadn't happened. I am certainly not better off. Spare me.

I am who I am. And regardless of the attitudes and actions of people and agencies around me, I know that I am going to keep striving.

sapphoq healing t.b.i.