“Grace & Badassery”

“Grace and Badassery” are the words used to describe me by a dear friend from whom (or is it who :-\ ) I sought counsel regarding a recent emotional experience.  As I proofread this blog, I am becoming aware of a little voice that pipes up and says, “why would you mention grace and badassery…THAT sounds braggadocious…aren’t YOU all high and mighty…people are gonna think you are a haughty bitch”.  As I become more aware of that menacing, self-confidence eroding, douche-bag voice, I realize I wanna punch her in the fucking throat.  WHY do I have such an easy time with self-flagellation and self-deprecation, but am not comfortable communicating the positives about myself?!?!

I share this with you because I am seriously working on my addiction to self-flagellation to which I have grown so accustomed.  We are all born with an immense self-confidence and have no qualms being our biggest cheerleader…but then life happens and that menacing voice starts to become part of our operating system.  This menacing voice has become MUCH louder and more active with my TBI.  I use the words “maelstrom” and “cacophony” to capture the constant barrage of chatter in my head…a great deal of it criticizing and diminishing.  I honestly think there are some similarities to schizophrenia (the voices just told me that the mental health community will probably blast me for comparing this to schizophrenia, but I told the voices to sit down and shut the fuck up :-).

In the spirit of March being National Brain Injury Awareness Month, I have decided to highlight some of the challenges that we TBI Warriors face…the menacing voices are just one of them.  Another big one for us is the people who knew us before our injury.  A few people who knew Karen 1.0 have been able to understand, empathize, accept (and dare I say even like) my differences after my brain injury. Many others (even some close friends and family) unfortunately have not.  The latter have seriously hijacked my self-esteem for the past three years…scratch that… I am gaining awareness that I have allowed myself to feel rejected, criticized, embarrassed, defeated, bullied, alienated, harshly judged, foolish, ashamed, embarrassed, and unlovable by those that are unable to adapt to Karen 2.0… here’s the good news though…what they think about me is NONE OF MY FUCKING BUSINESS.  People who negatively judge and criticize me are trying to find a solution to their own feelings of inadequacy…the problem with this solution is that it backfires for them because it causes more guilt and shame and becomes a vicious cycle…I know, because I am a recovering perfectionist.  Here’s the good news though…I am continuing to gain perspective, momentum, clarity and self-confidence and the reality IS that my value doesn’t decrease based on someone’s inability to see my worth…that’s a them problem.

A dear friend recently forwarded me the attached article from Huffington Post where Amy Zellmer is able to capture these subtly profound effects of this “invisible injury”.  It is as if she has taken my journey and so eloquently put it onto paper.  Having a Traumatic Brain Injury is oftentimes an intensely lonely and isolated place.  Even our therapists and doctors don’t have the most current information about TBI, so they are unable to provide support and screen for the TBI potholes.  So we are left to flounder around thinking we are fucking crazy and wondering why our lives are falling apart.  Thanks to more TBI awareness, we are VERY slowly starting to piece together some of the common side effects of TBI: impulsivity leading to strained and broken relationships, Adynemia which is difficulty with the ability to start or initiate activity, and the ability to keep going to finish and activity or task.  These are just a few examples of the litany of bullshit that we and our loved ones have to deal with EVERYDAY…and not only do we have to deal with it, we aren’t screened for it, or informed about it, or even supported by our healthcare system when we communicate these symptoms leaving us feeling like we are making this up, and very very isolated.  Most of us who apply for Social Security Disability are treated like we are lazy jackasses who are just trying to get money from the government to sit around and watch Maury Povich all day.  I just spoke with a person I met that has a TBI that is unable to work and gets $20 a month for food…waaaaaaaat?!?!  It is as if there is discrimination against able-bodied people with a TBI because we don’t yet have a mainstream way of capturing the data about the cognitive effects of a TBI (yes, I am hopeful that the fMRI – functional MRI – will offer us more empirical data about the effects of a TBI, but that’s a long way off my friends and there are so many people suffering in silence as we speak).  From Amy’s Huffington Post articles, we are forging a virtual support group of sorts on Facebook called the TBI Tribe where TBI Warriors can ask each other questions and get support from each other.  For the extraordinary feeling of validation and acceptance that this group offers me, I will forever be grateful…Thank you Amy…

5 Things TBI Survivors Want You to Know

For all of you Quote Whores like me, here are some quotes that have offered me some perspective on this chapter in my journey :-)

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Let the EDventure Begin!!!

First, I apologize for such a time-lapse since my last blog…I had some personal business to attend to and needed to disconnect to offer some time and space to gain perspective.  This experience has been an amazing opportunity for me to get a serious grace muscle workout as well as learn more about the consequences of emotional reactions to an experience.

Now that I am back online…Friday was my fourth graders last day of the “bricks and mortar” school until next school year.  Why? Most people ask…many with a look of concern for my psychological well-being :-)  This look as well as many long (sometimes heated) conversations have also occurred between my husband Mark and I regarding the subject of exploring alternative educational options for our kids.  Given his preference, Mark would not choose to home school.  I NEVER and I mean NEVER thought I would ever even consider ANY form of homeschooling, and now I find myself on the precipice of eagerly jumping headlong into that educational abyss.  When I was in school (back when we walked a mile to school in three feet of snow uphill both ways ;-) my only experience with homeschoolers was actually similar to that of my experience with Jehovah’s Witnesses.  I heard a lot of rumor and conjecture about ultra religious non-mainstream fringe people.  I imagined handmade long peasant dresses, braided hair, and well-mannered bible thumping children…I think I may have had them confused with my assumption about the Amish…this is a shining example of why NOT to assume anything :)  

Since my injury, I continue to cross paths with homeschoolers who have seriously challenged my HIGHLY misinformed assumptions…these home schoolers are very similar to Mark and I and are simply thinking outside of the educational box for their family.  And the more I think about that box, and recognize the benefits as well as the limitations of institutional education, the more I learn about SO MANY options for families…especially right now.  It seems as though we are on the cusp of an educational renaissance where people are evolving from seeing education as an institution where children sit still for multiple hours in a hard plastic chair (and then endure more hours of homework after finishing their full-time job) so that adults can infuse an information set into a child’s mind.  My dream is that my child’s educational experience can be more of a dance of curiosity, adventure and real life experience, where the education is just a cool side benefit.

This wacky-ass dream of mine has not come without some hiccups.  It has been a sticking point for Mark and I for almost three years now.  Our kids are thriving at their local public school, their school is one of the tops in the state, and oh, by the way, I am on private disability because of the cognitive side effects of my brain injury, so how in the hell am I gonna be able to teach my kid when there are professionally educated teachers doing a fine job?!?!  Here’s my perspective: While I DO struggle with multitasking, organization and completing tasks, I CAN do it at times, and the virtual charter school that we have chosen is a program that is already all planned out for me as the educational coach, and Lawson has a full-time teacher as a resource for us anytime we need it.

As I learn more about our educational system, and spend more time in my kid’s school, I see the reality of eduction…we keep trying to cram more and more into a smaller and smaller space.  The list of information that teachers are expected to infuse gets longer and longer while the physical play and exploration gets shorter and shorter.  As a mother of two active boys, they learn by moving, exploring, hunting and gathering…not by sitting still and being quiet…so my heart breaks every time I see their curious, bustling, mercurial spirits being sent the message for the majority of their day that those qualities are not okay and that they need to sit still and listen.  I see my 10-year-old dreading homework and losing the spark of curiosity that is innate in all of us.  I see my first grader fighting back regarding doing homework (likely because he is exhausted from being told what to do all day and just wants some free time to do what he wants to do).  I then wonder why a first grader even has homework when the studies I have read show no benefit from homework for elementary aged children.  I see my friend’s teenage kids with hours of homework and talk with them about how they don’t have much free time and they are learning how to become good at cramming for a test and not actually learning the information, just regurgitating it.  The outcomes that I see with my personal study with an n of 2 is two kids learning to resist and resent learning, and I am not okay being a silent accomplice at snuffing out that creative and curious spark.

I see myself as an advocate for my children because the reality as I see it is that we are asking them to have a full-time job and then bring their work home and do more work while they are at home.  What message is that sending to our children?  That when you put in a full day of work, you come home and work more, and don’t take time to unplug and recharge?  That is NOT a message that I want to send to my child.  I want my child to learn that you work hard and after the hard work is completed to the best of your ability that day, you relax and unplug.

My perspective is that if the school system cannot fulfill their objectives in the SEVEN hours that they have my child, then perhaps they need to look at the efficiency of the institution rather than sending that work home for the parents to have to teach their child when they are all exhausted after a long day of work.  IMHO, we are cramming WAY too many kids into a classroom and asking a teacher to do the impossible.

So, we have decided to do an educational experiment of sorts with one of our children for the last quarter of the school year.  We have decided to enroll Lawson in an online virtual school called K-12.  We first asked both of our kids if they were interested in trying out this experiment, and they both were.  Mark and I then decided that our fourth grader would be the first to try because he is already quite responsible and independent, and perhaps might thrive in this environment.

For those of you who fear for my child’s “socialization” and think that he might become some creepy kid who can’t carry on a conversation with others because he is homeschooled by his mommy, I assure you that me being his only form of socialization is the LAST thing that I have planned for my child.  My intention at this point is to encourage our kids to attend their public school for the majority of the school year, and take them out (either individually or together remains to be seen) to offer them the freedom and space to get out of the classroom and into the world for their education.  My younger son Huston is already planning for his crack at homeschooling next year :-)

There are innumerable resources for families that are alternatively educating their children.  With the connectivity of Facebook and the internet, homeschoolers are no longer on an island.  We went to Sky Zone trampoline park today for their home school day and met some great kids.  Wild Blue Ropes Course has Friday as their designated home school day.  I also now have the freedom to go on field trips to places like Chicago, Nashville or Washington DC when school is in so those educational activities like museums can be more of a fruitful educational experience rather than fighting the crowds .

I also plan on taking my kids to visit friends and associates at their place of employment to get a good perspective of different career opportunities.  I want my kids to become critical thinkers about finding a way to earn a living while still actually living their lives…not just enduring a unfulfilling job with two measly weeks of vacation a year, saving up for retirement in a lifetime career path that they chose as a Sophomore in college because they had to pick a major.  I brought Lawson with me to my physical therapy appointments yesterday and today so he could get a good perspective of what a physical therapist does and ask him questions.  Today, the PT even put Lawson to work and he took my blood pressure, entered my vitals, and taught me how to use the exercise band!  The cool part about this journey is that Lawson will have SO MUCH more time in his day to explore his interests, and will have the time and the space to learn the way that his brain wants to learn.

Am I terrified that this experiment will fail miserably?  Actually, no.  If this does go down in flames, then that is just more information for us as a family moving forward, and we can take that information and use it to explore other educational opportunities.  We can re-enroll in the bricks and mortar school at any time, and I have spoken with all of the administration there and they are very supportive of our edventure.

My one fear is that my private disability insurance will learn of me virtual schooling my child and subsequently determine that I am equipped to do a college education level job and no longer pay my disability claim…which would be a pretty disastrous financial and emotional chapter for me…soooooo…rather than let that four-letter-F-word FEAR hide in a dark recesses of my heart and mind and continue to eat away at my soul, I am going to shine a big, bright light on it right here and face it head on.  Here’s the reality: there is no such job that pays a college education level salary for facilitating the education of one or two children with the full-time support of a certified school teacher.  As with most other undertakings since my brain injury (like doing yoga teacher training last October) this will be another experience to shed more light on just how difficult it is for my brain to work up to standard.