Stop Hurting That Tree!

     I was out walking with the dying dog today [she has terminal liver failure but so far is comfortable and still eating and holding her own three months post diagnosis] when I came upon a mixed bunch of kids-- some were teens and some younger-- gathered around two trees. The older kids were harassing one of the trees. 

     Specifically, they were grabbing onto one of the lower branches, yanking down to several feet from the ground, and then attempting to sit on the branch and bounce on it. There were no adults in sight. [The kids were at some sort of day camp I think]. The property being used was board of education, i.e. school, property.

     The tree branch was not designed for what it was being put through.

     I had several choices. I mulled them over in my brain. I decided to do something in spite of my reluctance to get involved and my uncomfortability factor.

     I stood there with my hands on my hips. Then I projected my voice as loudly as it could go without giving myself coughing spasms. [My voice is soft. What other people consider to be "conversation level" sounds frightfully loud to me].

     "Why are you hurting that tree?" I asked.
     "Stop hurting that tree!"
     and finally, "Let go of that tree!"

     The adolescents-- to their credit-- did. A younger boy who was not involved in the tree incident waved at me in a friendly fashion. I waved back at him.

     A young adult then appeared at the doorway. The adolescents and basketballs dispersed. "Well, get into your groups," he told the junior high and elementary school aged children. He could not look me in the eye. I am not a proponent of eye contact so this was fine with me. 

     Life went on.

     Here is a picture of the tree an hour after having its branch jerked around. The branch is not where it should be. The teens were really going at it and I was afraid that the branch was going to be broken off.

Bottom branch of this tree was pulled from about six feet to the ground numerous times. Picture was taken an hour later with the branch still not in its proper position. I took the picture myself so go away copyright monopoly trolls. You are not welcome here.

 sapphoq healing t.b.i. and resultant brain damage says: Speaking up is part of being a responsible community citizen. When choosing to do so, pick your words carefully. Do not attack the person, only the action. Those children and teens that you do not understand will be here long after both of us are dead and gone.

It's Official !

     I did it! 

     Last week, I published two e-books. 

     A friend and I wrote Up the Rebels! together. It is a fun story about a fellow named Jesus born in Newark, New Jersey, Ed SnowD -- I mean Dree RainCave-- hiding in plain sight, the people who are helping him hide, a few mental patients escaping from their oppressive outpatient day program, a fourteen year old who is rescued by some homeless people, and more. Featuring several cats in its pages, Up the Rebels makes for a good read on a rainy day afternoon. You can find it at:  http://preview.tinyurl.com/njy4vm2


      The cover features a picture of a funky bus that I took on a visit to San Francisco:

    



     My second book I wrote without a co-author. It demonstrates how an atheist can work the twelve steps and remain clean without any higher powers. I had to re-write the steps in order to do so. Recently I celebrated thirty-four years of continuous clean time. If you are in recovery, you may want to take a look at Another Atheist in Recovery at:

http://preview.tinyurl.com/m37wmhv

     The cover is of a trail that my dog and I enjoy walking:

     
sapphoq healing brain damage says: In my determination not to allow my disability to beat me, I decided that if I want something different, then I have to do something different. It took over ten hours for me to learn how to format my e-books. And countless more hours to write and re-write them. Risk-taking is risky. Endeavoring to achieve a dream took hard work. I had to battle my severe fatigue while doing it. I did it. And I am still writing. 
     Remember: It takes courage to dream new dreams. And yes, I believe in you.

I can be found at Twitter(tm): https://twitter.com/spikedupfrog

Brain Drain

Yeah, I took the photograph and then altered it using my legally obtained copy of digital art software. Yeah, you can download it to your computer and use it at will on the interwebz. No, link back is not required.
And if you are a copyright monopolist, you ought to go away now.

     Yesterday, I had an achy head. Not exactly a headache-- ever since the blocks put into my skull, I rarely get full-blown headaches or migraines-- but something that hurt. Sometimes I will take an over the counter medicine for this and sometimes I won't.

     Challenge and rest are both important when dealing with the damaged brain. I have to challenge myself enough so that the brain can improve. I also have to rest enough so that the brain can improve. Managing a balance between rest and action is tricky.

     I felt it yesterday. The physical achy in the brain coupled with the idea that I was experiencing the beginnings of "information overload." Crap. I was busy and I did not want to slow down.

     I had to slow down. I had to drag myself from my reading (the cause of the info overload) and force myself to do something else less taxing. I had to take a rest.

     Often it is a physical rest that I require. Once in awhile, it is more that I need a change of scene coupled with a change to a less challenging activity. Yesterday, I needed the latter. I went out with my housemate for a bit. I felt better.

     The rest of the day, I monitored myself. I usually nap in the afternoon for an hour. Yesterday was no exception. The achy head stayed gone. I was happy about that.

         ~ sapphoq healing brain damage, but not completely ~

Don't Have a T.B.I. in Kansas

     Even though there really is no "treat" in the word treatment, Medicaid denying access to services for a young man with a complex set of behaviors related to the after-effects of his traumatic brain injury is-- in my unasked for opinion-- inexcusable. The young man is a resident of the state of Kansas. His mother does not know what to do with him or for him. She cannot handle him due to problematic behaviors which have caused him to wind up in jail. While in jail, he had a seizure. The seizures are another, ahem, "gift" of his damaged brain.

     My own experiences with insurance companies causes me to believe pretty much that they are not interested in paying for t.b.i. services. Especially when no-fault car insurance is in effect. No-fault simply means "This ain't out fault and we ain't paying." The workers' comp company was similarly disinterested in paying my bills. Consequently, the only therapies I received were physical therapy [which did help immensely], vision therapy [which has not been medically proven], and a few sessions with a quack "cognitive art therapist" who threw me out because I refused to go to her personal internist to be prescribed medications. [I already had my own most excellent professionals in place]. The word quack is used as an adjective. People who claim to have a PhD [thirty-five bucks and a copy of a book describing her own history with brain injuries-- nine to be exact-- got her a piece of paper] from an alleged mail-order fake college may not be totally honest about their qualifications. I was told in t.b.i. chat that I had to take charge of my own rehab. This certainly has proven to be true.

     But the young man in Kansas is not able to do what I did. Some folks can't because of their level of impairment and that is a fact. Period. Meanwhile, Medicaid refused him admittance to a long-term program of six months to a year as an in-patient in a hospital as a patient with t.b.i. I feel bad for both the young man and his mother. 

     It seems that unless news items involve the word sports or the word veteran, some percentage of the population does not understand, does not wish to understand [in the case of employers and past employers], or cannot understand that head injuries can bring on complex symptoms which don't go away by wishing. A Vermont ski area certainly does not wish to understand [in my opinion via perusal of a court order] that the head and the neck are connected and that headaches certainly do originate in the head. I feel badly for the young man involved in that court case. He was a volunteer at the ski resort and was severely injured when snowboarding off the mountain. His injuries included but were not limited to a traumatic brain injury.

sapphoq healing brain damage says: Rehabbing someone with a traumatic brain injury costs money. Every brain injury is different. What happens to us in the aftermath may be very complex. We who have lived through brain injuries are people and we deserve competent treatment. What price are you insurance companies putting on our heads??? FAIL.






http://www.leaderandtimes.com/index.php?option=com_content&view=article&id=17624:medicaid-denies-treatment-request-for-young-man-with-brain-injuries&catid=12:local-news&Itemid=40

http://labor.vermont.gov/wordpress/wp-content/uploads/KibbieMSJ.pdf

Even Better

     The bird was hanging upside down from the feeder. He was almost frozen. He was not a happy bird. He was having a bad day-- no, not a bad moment-- a bad day. The weather had been miserably cold for a week. I found him there, removed him, and took him inside to warm him up. I set him free outside and he sang hosannas of gratitude.

     No. That's not how it happened. I saw him there upside down, his feet frozen to a metal part of the underside of the bird feeder. I wasn't sure if he was dead or alive or in torpor or what. After some hesitation, I wrapped him in a yellow towel and took him inside. He made no noise whatsoever. His legs were messed up and at odd angles. If he was dead, it would have been a mercy.

     I warmed him up by the radiator on the off-chance that he could be saved. The kitten came up and inspected him.

     I put the bird still wrapped in the yellow towel in a basket in a tree in the sun. He was not there the next morning. I figured that either he had flown away or that a desperate hungry hawk or something ate him. He was back in the thick of nature however it went.

    The fiction that I had definitely saved the little bird is preferable to what actually happened. We don't like messy endings in general. We don't like to read about little birds that might be dead or might have been eaten by a bigger bird. We want everything as it was before or even better than before.

     But life is not like that. Mother Nature is a real Muther. Nature is cruel and stalking and predatory. Nature does not give one whit about any of our wishes, desires, or dreams. Life happens and death happens. Those who are born do not in any way make up for those who die. Oh perhaps in population statistics but not in any other way.

     Even if the bird flew out of the basket, his life was not the same or even better as it had been before. His legs were injured. Even if they healed up, they were not "good as new." Even if he lived, he certainly was hobbled by his experiences.


sapphoq healing tbi says: Some well-meaning people want us to be like we were before whatever happened to each one of us that left us with damaged brains. They gush at us "Oh isn't it wonderful that the brain rewires itself?" We are beyond their gushing. We know that we are beyond magical yoga retreats and fish oil and stupid talk of brains putting themselves back together again "even better" than before.
     Think before you open your mouth to impart some fake cure or false hope. Chances are, we don't want to hear those lies. Tell us to keep working at those things that we are re-learning. Tell us that each of us has to be in charge of our own rehab. Tell us that our lives are different. Tell us that life is neither fair nor unfair. Life is sacred and nothing is promised to us. 

     No, I am not "better off" than I was before the day that my life changed forever. No, brains do not rewire themselves to be exactly the way they used to be. Yes, I certainly do have a life today. This is not the life that I signed up for but it is mine. I keep striving to work around my deficits. I keep challenging my brain. I keep doing the things that I learned that I must do for myself in order to have some kind of a life. It is easy to sit around and mope because I have brain damage now. It is better to force myself to participate in my life. It is even better to work for what I consider to be worth working for. And having a life-- even if it is a different life now-- is certainly worth working for.  

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.   

  

An Expert Talks About TBI

This vimeo video from Mt. Sinai School of Medicine gives an overview of Traumatic Brain Injury:





If the embed code is not working, the video can be found here at:
http://preview.tinyurl.com/nblqxbs [until it gets moved at some future date anyway].

sapphoq healing tbi

On Suicide

Right-click to save to your computer if you want it.

Brain damage in the area of the left frontal-temporal lobe is fairly common.  That is also the area of the brain that is thought to be responsible for depressive symptoms.  Because some percentage of us do not want to be identified as having a psychiatric problem-- cripes, the brain injury is "bad enough" we think without adding the word "nutcase" to the mix-- we ignore the development of suicidal ideology or any indication of a mood disorder at our peril.  Our brains are damaged.  There are people who think we are whacked, odd, different, dumb, stupid, peculiar or weird anyway.  If prescription meds used as prescribed are able to give us a break from some distressing symptoms then why not?  That false ego that says, "I can do this myself" or worse yet, "I can blend in and be like everybody else" can kill us.  It takes strength and honesty to conclude that we cannot conquer all of this crap on our own.  It takes guts to ask for help.  Some of us who were already being treated for psychiatric conditions pre-injury will find that our old levels of medication no longer maintain us.  We need more.

Recognizing a need for professional assistance or a need for more of a previously adequate dose of psych meds is not a cause for alarm unless we make it so.  This insight is a sign that the left lobe of the brain is not all dead yet.  Insight originates somewhere in the left lobe.  The ability to put that insight into action rests within the frontal lobe.  If we are able to determine that something isn't working, we might choose to endorse ourselves rather than to put ourselves down.  Even better the ability to act on that knowledge [or to ask someone to help us] and locate a medical doctor of some sort who understands at least something about traumatic brain injury and will undertake to prescribe for us.

Presenting ourselves to that professional is a beginning.  We have to be willing to answer some background questions and to listen to suggestions.  This is not a passive operation.  Our appointments are a chance to list the symptoms that bother us and to ask questions about medicine or any other treatment which is suggested.  The reality is that public mental health or behavioral health clinics often do not listen well.  Locating some help within the private sector [providing our health insurance will pay enough towards said specialized help] might be the better option.

If you are finding any of the following:
     You want to kill yourself or harm yourself or have been flirting with thoughts like that;
     You have thought about how you would do it;
     You have access to the weapon or instrument of your choice [such as a gun, knife, blades, pills, a car to drive over a cliff etc.];
     You would do it if the random chance came up to off yourself;
     You think you wouldn't have to worry about stuff or that the world or everyone would be better off if you just weren't here anymore;   
s t o p reading this blog post, get off of the internet, and tell someone who will take you seriously what you have been thinking.  If the first person you tell does not understand that you are serious about hurting yourself or committing suicide, then tell someone else.  
Get to an emergency room if you must.  Being drugged temporarily [and hospitalized if you have to be for your own safety] sucks but quite frankly, there is no hope of improvement if you are dead.  It takes guts to ask for help.  
If you are able to promise to postpone taking action on your suicidal thoughts, then call your doctor's office for an appointment, show up at a walk-in clinic, contact your insurance company for a referral list, or ask a family member or friend to assist you with this if you need to.  Again, you don't know if these painful feelings could have been alleviated if you are dead.

What is distressing to me at brain injury conferences is the invariable presence of one or two survivors who have symptoms of major depression or schizophrenia or other disorder, are taking medication for their symptoms, but deny that they have a psych condition.  Psych conditions can arise from the impaired functioning of the brain or from the stress of living with a t.b.i. or some combination of the two.  They are separate disorders and we deserve treatment for them.  It stands to reason that if we treat all of the health problems and complications that arise, we will have better outcomes.  In other words, psychiatric symptoms just like the symptoms of our brain damage does not have to rule our lives.

With the brain injury, we can have many complications: photophobia, dry eyes, ocular motor dysfunction, hearing loss, sleep apnea, impaired limb movement, paralyses, motor disorders, language disorders, structural changes in our feet as well as gait changes, fatigue, obesity, addictions, slowed cognitive functioning, and more.  We don't hesitate to pursue medical alleviation for any of these issues.  Why is something with psychiatric implications different?  The bottom line is that many if not all thought and mood disorders have neurology as a basis, or at the very least contributing neurology.

Yes, there is certainly widespread discrimination [screw the nami mommies and their big pharma monies and their talk about "stigma"] against people who have psychiatric labels.  Guess what?  There is discrimination against brain injury survivors too, just like any other potentially disabling condition.  If you haven't run into it, you probably will.  [If you don't, please contact me and tell me what state and country you live in. I want to migrate there].  
I've lost friends to suicide.  It isn't any fun. Suicide hurts those that we leave behind-- whether we think it will or not.  Brain damage, like any other changes in neurology, brings on changes in one's life.  Don't make this any harder on yourself than it already is.  Commit to staying alive and to taking care of your mental health, just like you would the rest of you.

sapphoq on t.b.i.      

Book Review

Brainlash:  Maximize Your Recovery From Mild Brain Injury, Gail L. Denton.  New York: Demos Medical Publishing, LLC, 2008.  Third Edition.  e-book, 343 pps.

Brainlash is a book that is divided into 42 short, easy-to-read chapters interspersed with a journal kept by the author regarding her own brain injuries.  Although Dr. Gail L. Denton is a professional therapist, I encountered choppy and repetitive sentence structure in her book.  I was not expecting this from a licensed professional.  The book could have benefited from better proof-reading.  There were no grammar mistakes.  There was a certain lack of variety within the sentences which in my opinion ought to have been corrected.  Some crucial information was also missing.

Denton refers to m.T.B.I. [mild Traumatic Brain Injury] as an epidemic without accounting for changes in definition which renders an increase in diagnoses.  This "T.B.I. is an epidemic" refrain is one that is often heard in order to boost attention to the problem and hopefully garner more funding for an organization.  I could not help but note the similarity to the claim that "Autism is an epidemic."  The bottom line is that there are a bunch of diseases and conditions which need more scientific research so that best practices can be refined.  

It is "easier" for the State of Vermont to award the contract for all treatment of traumatic brain injury to an agency of visiting nurses than to figure that some brain-damaged people will wind up not getting services as a result of their lack of insight into the nature of t.b.i.  It is "easier" for the frustrated medical professional to latch onto the diagnosis of Post-Concussive Syndrome and treat those symptoms rather than to deal with the whole person and the nature of life-altering events such as brain injury.  It is "easier" for the New York State Health Department to contract the services of a man with a diploma mill PhD to treat t.b.i.-ers than it is to find out which providers actually have a real PhD and decide which one or ones might be best equipped to give effective neuro-cognitive treatment to survivors.  It is "easier" for folks to say to their friends suffering from brain damage, "Oh I get that too" or worse, "You were always like that."  It is easier to push people into the round holes rather than to pay attention to folks who don't fit into neat little protocols.  This whole "Oh noes, _______________ [condition of the moment] is a national epidemic!" thing ought to be put to rest.  All of us, regardless of disease, condition, or health status deserve scientifically-validated treatment protocols.  What doesn't work doesn't work.  Anecdotal testimonials are inferior to peer-reviewed literature.

I can tell you that some of the chiropractic treatments I received "worked for me" to relieve pain on a temporary basis.  I can tell you what they were.  A hundred or a thousand or a million people can tell you similar stories.  But the stories are only stories.  Alternative medicine is popular.  It's the latest buzzword.  People need hope.  Chiropractors, tarot readers, politicians and others sell hope.  But how well does the hope actually work?  I can tell you that I've improved but does my claim hold up under scrutiny?  Do I have test results and proper medical reports to back up what I am claiming?  Goals have to be measurable and results have to be measurable too.  Gail Denton didn't find satisfaction with traditional treatment for her traumatic brain injuries.  So she went elsewhere.   

To be sure, the western medical establishment and the individuals in it are not perfect.  And with concerns about costs, those of us who don't fit into a traditional mode are often discarded left to be in charge of our own rehabilitation efforts.  Insurance companies are designed to cover as little as possible.  No fault automobile insurance [for the states that have this] means "We ain't paying cuz it ain't our fault."  I've fought for medical treatment.  I had to get a lawyer.  Writing in a journal [something which Denton recommends and which I think of as an okay thing for those who want to do so] can be dangerous when it comes to legalities.  Consult with your attorney before deciding to keep a journal if you are a plantiff or a defendant in a lawsuit stemming from your accident.  Don't have a lawyer for your workers' comp case?  Get one.  Your employer has at least one lawyer.  That is almost a guarantee.

One of the things that is crucial in my view for brain injury survivors is neuro-psych testing.  The testing [in my case done by a neuro-psychologist at a rehabilitation facility] is necessary.  Neuro-psych testing pinpointed the areas of my greatest cognitive difficulties as well as my strengths.  I needed to know these things so I could develop work-arounds.  Work-arounds are strategies that I use based upon my strengths that help me in daily life.  With brain injury, battering on our areas of cognitive weaknesses in the name of remediation [in my non-professional opinion] doesn't work.  One of the symptoms of my brain injury is repeating the same mistake.  Attempts to train my way out of repetitive mistakes failed.  I had to find a way around making the same mistakes over and over.  I learned that any ability that I used to have at multi-tasking was pretty much dead.  To this day, it remains dead.  Forcing myself to multi-task in small steps did not work.  What worked for me was finding ways to avoid multi-tasking.  I had to do things in different ways.  Neuro-psych testing provides a roadmap of "where to go from here."  It is vital.  Get some.

The other thing that Denton neglects is testing for complicating conditions caused by the brain injury itself.  I remember these statistics:  
          80% of us have vision problems as a result of our brain injuries.  These vision problems are not limited to field deficits [something Denton does mention].  Vision problems may be expressed as double vision in one or both eyes, perception problems, the appearance of "ghost-lines" around the things we see, ocular motor dysfunction [the eyeballs not moving well], photo-sensitivity in varying degrees up to and including true photo-phobia, dry eyes because we don't blink as much as we used to.  This list is by no means exhaustive.  One of the things not on the list is visual acuity.  Visual acuity is the thing measured by the Snellen Eye Chart.
          20% of us have hearing loss as a direct result of our brain injuries.
          50% of us have sleep apnea or other sleep disorders as a result of our brain injuries and/or obesity occurring after a brain injury. 
         Up to 90% of us with left frontal temporal lobe damage develop [or have worsening problems, if there was a pre-morbid mental health diagnosis] Major Depression.  

What do these numbers mean for those of us with acquired brain damage?  Hearing should be tested.  How our eyes function [not just visual acuity] should be tested.  We should be screened for the existence of a sleeping disorder and some of us will be then referred to a lab for a sleep study.  Our mental health should be evaluated by a clinician who is familiar with traumatic brain injury.

The last piece of vital information missing from the pages of Brainlash is the idea that the categories "mild," "moderate," and "severe," denote things like how long a loss of consciousness was in the event that caused the brain to go bangity bang bang but those categories are not correlated with disability outcome.  In other words, a person who is given the diagnosis of mTBI [mild Traumatic Brain Injury] can wind up with more permanent disability that someone who is given the diagnosis of moderate Traumatic Brain Injury.  A person with severe Traumatic Brain Injury may be able to have gainful employment after treatment and someone else adjudged as mild or moderate may not.  Finally, "mild" does not mean that the brain injury is not serious.  All brain damage is potentially life-altering.

Brain injury survivors in the States ought to get in touch with their state Brain Injury Association.  These associations vary in effectiveness and aid offered to the survivor.  Some have support groups.  Some have scholarships for survivors in economic hardship to attend their state Brain Injury Conference.  Some hold informal discussions.  Some are involved in other talks and one day conferences which survivors may be able to attend for free or at a reduced rate.  Some have lists of medical providers who are familiar with t.b.i. and some refuse to provide any information about that.  If you don't contact your state B.I.A., you won't know if there is help available to you.  If you have contacted your state B.I.A. and found them lacking, you can look up your regional office of Independent Living Associations.  Folks who work for an I.L.A. often have disabling conditions themselves.  Many I.L.A.s provide informal peer counseling, disability advocacy, and benefits advocacy.  And yes, they do have lists of other agencies that may be able to help. 

sapphoq reviews says:  The book Brainlash has a lot of promise but does not deliver.  Although the chapters are short, the information provided is of the "nothing new here" variety.  Survivors who need support would do well to look for it via neuro-psych testing, a state Brain Injury Association, an Independent Living Association, and/or on-line via brain injury chatrooms and e-mail support groups.  Skip this book. 

this entry was cross-posted to sapphoq reviews.