A Plan Is a Start

This is when I become a model…

I was sitting in a training session yesterday, listening to the speaker and looking around the room. I noticed that the people were wearing clothing with very intense colors. I mentally scratched my head, and then realized that all of my symptoms for the week began to make sense.

It’s one of those moments when you realize it is really going to suck. There’s no turning back, and it’s probably going to get worse before it gets better.  Fortunately, I have been here before and I know what it is like.  I know what it meant to see those colors and notice those sensations.

Two weeks prior, I had intense nausea—the kind of nausea where I wasn’t even able to move my head without fear of losing my lunch.  I remember one of the days I went from feeling a little off to quickly looking like death. One of my coworkers drove home behind me to make sure I even made it home a mile down the road.  I was miserable, and there was something terribly wrong. Even when I started feeling better the next day, I wasn’t completely better.  My sleep started getting jumbled and I began having intense pain through my legs as I slept.  I was tired and achy in the daytime, but not enough to really think something was wrong.

This week, I hadn’t slept.  Ok, that might be exaggerating. Over four days, I had probably nine hours of good sleep. I had become absolutely miserable.  I was feeling dizzy and felt a lot of pain during my sleep.  I was also hyper-sensitive to sounds, smells and touch. Bumping into things hurt, textures and clothing bothered me, and I noticed there was quite a bit of tension in my jaw.

I looked back over these paragraphs and realize there is quite a bit of whining going on.  I need for people to understand I am a person that walked on a broken foot for five days before going to the doctor, and I have dealt with pain often without getting assistance.  I have realized now that this is ridiculous.  We have a culture where pain is glorified and we are supposed to be miserable.  I am not always the best example (mostly because I don’t make time for myself), but I would like to change this.  In fact, the rest of this post will be about the brain, how it works, and self-advocacy. I know it’s a break from the project, but it’s part of my life and my hope is that this story will reach people that don’t know about people with different needs.

So, here goes:

 Fibrofog: My brain was already a bit jumbled from fibromyalgia before the accident a few years ago. Fibromyalgia/chronic fatigue causes something called fibrofog.  For those of you out there with children, think about the first few months with a new baby—massive sleep deprivation, where there is little ability to have a clear thought.  This is exactly how it feels to have fibrofog.  To people without children, I liken it to what it is like in college when you cram for exams and stay up for days on end. After a few days, you lose the ability to function. 

Energy: Loss of energy can be difficult if you have your cognitive wits about you, because your mind still tells you all the things you NEED to be doing.  I am a goal-oriented person by nature, so when I am in the midst of a flare, I hate taking it easy and not doing everything I am supposed to.  It makes me miserable to have zero energy. I want to be active and participate.  I want to work. I want to have a family. I want to get out and have a life.  I don’t know of a person that enjoys a life on a couch watching television.

Pain: There is constant pain, and it comes from things that shouldn’t cause pain. An excellent example happened this week.  We have had a drought for the past few weeks, as well as intense heat.  I went to run errands after training this week, and we happened to have some fairly steady rain. I went without an umbrella, and the raindrops actually caused burning pain on my skin as they hit my arms. Touch that is inconsistent and is not deep pressure is painful. During a flare I do not like to be hugged if it isn’t deep.  I am not a fan of someone just patting my arm, and I become edgy if people bump into me.  I am not a mean person by any means—my body just interprets these signals as pain.  Until they can figure out a solution to these crossed wires, all I can do is apologize.

So, all of these issues (and many more, really) were present before I had the accident that reset my world.  The accident caused exponentially more pain and a lot of memory and organizational issues.  After I was about to move about from the accident, I created a notebook to organize information. It made sense to get all of my needs in one place.

I realized now what this notebook is: a self-advocacy notebook.  And now, I realize that I need one. I teach my students that they will succeed if they identify their needs and tell people what they need to help them succeed.  I guess the best model I can be for them is to model how to do such a task.  So, I am going to sit down and identify what it takes for me to function best and what I need from the people around me.  I am fortunate to have a wonderful support network.  I have a great group of people that work best when they are educated on how they can help me. 

My irritability stems from me being tired and in pain, and when my family knows that, they will know how to help me. They will also know it is temporary and it is not their fault. Communication is important, and another vital need of this notebook.

This reminds me of the emergency behavior plans we have for students with behavior problems. It is a Plan B of sorts for students that often require de-escalation, isolation or restraint. I remember reading a student that had a “mad and sad plan,” and wishing I had one of those.  We all probably really need one of those…

So, the notebook is in its preliminary form, and will develop over the next week. It will grow as I become stronger in what I want. I know there is a lot I can expect from myself, because I carried a lot by myself for so long. I also know that I function best when I don’t carry everything on my back (which keeps me from having flares). So, the more I share the weight, the healthier I will stay!

I am hoping that this intervention came in time.  I think I am finally getting smart enough to realize the flares before they get to be too strong.  I remember the last one—I was stubborn enough to wait a month to see the doctor.  I finally sat in her office in tears. I told her I hadn’t slept in over a month, and I needed my sanity. I was in constant pain, and I was losing my mind. Fibromyalgia and chronic fatigue will make your body feel like it is failing you. In fact, your body is short circuiting, and is in effect failing you… I felt like I had the flu for the past few months, even though I had to continue working full-time to maintain a living.

I will not go there again.  I cannot do that again.

A plan is a start.

Where Do I Go From Here?

For the past two days, I have been at a gifted education conference for differentiated instruction.  It seems like I returned from one trip to unpack, do laundry, attend work for a few days, then ship out again.  For this conference, I brought along high expectations of uncovering more secrets about myself.

For those of you that didn't know me when I was younger, I was pretty darn gifted.  I was an extremely intelligent and motivated creature, and always had a willingness to push farther and reach lofty goals.  Looking at me now: I am still motivated, and pretty darn persistent.  I worry that the "giftedness" is gone though.  I know that a lot of information came back to me post-accident, but it seems my processing just isn't as quick as it used to be.  My mother commented that it's probably only noticeable to me--that most people still see me as sharp and able to do incredible things.  Gee, thanks mom... I think you HAVE to say that... :-)

Anyway, back to the conference.  While I was there, I met incredibly interesting people and brought a wealth of information home to use on creating a motivating and autonomous environment for my students.  It really made me reflect on what made me so different from some kids I teach.  My upbringing wasn't perfect--we lived in poverty in the beginning.  My parents each worked multiple jobs for us to get by, and I have plenty of pictures of myself as a toddler resembling "trailer trash."  One of the differences I noticed was that there were always books EVERYWHERE.  I remember taking the TCAP test survey and commenting that I had more books than the largest choice on the survey, and wondered what I was supposed to choose for an answer.  I also know that my parents were excited and motivated to learn, and weren't afraid of making mistakes.  I believe this was a major difference in how I ended up being so freakin' awesome.  They taught me to get out there and explore--the worst thing that could happen was that I failed.  At least it would be fun along the way!

I wish I could say that's how it really happened.  In reality, I was a fairly tightly-wound young person.  I wanted everything perfect, and I was terrified of making a mistake.  I was afraid of the world around me, but I desperately wanted to join it.  I was intimidated by college, because I knew there were people smarter than me and I wouldn't always be the best.  I didn't really know my "place" in everything, and it scared me.  I craved order and hierarchy. Mass chaos was terrifying.

The accident was probably the best thing that could have happened to me.  I know it's strange to say, but I learned to loosen up, take risks, make mistakes, and enjoy life.  I learned to try new things and explore the world around me.  I broke out of my shell and decided that I was going to get involved in everything I could get my hands on.  I will tell you that many days I am exhausted, but I am ENJOYING life.  It's really a great concept. More people should do it.... :-)

I glanced at my calendar at the start of the conference today... March 16th... That means 8 months until I turn 30.  I have 8 months to complete my list.  I can't believe all of the cool things I have done so far, and I still have 8 months to go!  I am still working on the race and reading my list of books (I need to start updating on my progress).  Drum lessons have gone smashingly (yes, pun intended), and I am lining up my road trip and fish-catching excursion.  I am working on all the other adventures as well, and have quite a great 8 months planned.

And more great news? I had been working on a writing project. Actually it's a book idea, and I traveled to talk with people about the project.  I have been put in contact with publishers, and people are arranging interviews.  Everything seems to fall into place for this project, mostly because I believe they are stories that need to be told, and people do want to read them.  I also feel that a fine legacy of mine would be to publish stories for people to read for generations to come.  I am beyond thrilled of this opportunity, and wonder if I will get to sleep tonight. :-)

I also got accepted into graduate school for a second Masters Degree.  Now that I have so many great options, I need to start making decisions.  Life is a process, and I know there's time to get everything done.  No rush- I am more about the journey than the destination.

I am now looking out into the future, and can't even imagine all of my options.  Ultimately, I have every choice in the world laid before me.  Every day I ask myself, "where will I go from here?"

The Prodigal Son

I took a road trip this weekend--it was part work and part pleasure.  I had to drive to Chattanooga to meet with a traumatic brain injury council for work, but also had a little bit of free time to explore the area.

I talked with a friend on Day 1, and he told me to make it a goal to explore and try two new things that day.  There was plenty to explore, so I knew my goal would be much higher.  I made a few mental calculations about meeting times and such, and tried to figure out what I might like to do that was new and exciting.

I realized this may have been the first time in a LONG time that I took the time to do whatever I pleased, and explored the world around me.  After thinking about it for a while, I realized it was probably a good four years or more (which is terribly pathetic).

So, I decided that between meetings I would venture over to the Bluff View Arts District in downtown Chattanooga.  I had never really ventured around the area, and I am sure there were plenty of things I could see.

I went to the Bluff View Bakery and watched them make artisan breads (and bought a pretzel the size of my head!).  I stopped in at the Rembrandt's Roasting Company, and talked to the Apprentice to the Roastmaster.  He showed me how coffee beans were roasted, which was an incredibly cool experience.

I stopped in at an art gallery and took a look around, then went over to Rembrandt's to grab a cup of coffee.  Of course, it was sunny and there was a cool breeze, so I snapped tons of photos of the view.  I traveled into the sculpture gallery to sit and enjoy my snack, and took a long stroll past all of the art.

I don't know how to describe moments like these- I just wish I had a camera that could capture sensory experiences.  As I sat on a bench and looked around me, there was a cool gentle breeze, I could feel the heat of the sunshine on my head, and I heard the clanging of a set of artsy wind-chimes.  In the background, I could hear the cars soaring over the bridges.  I closed my eyes so I could drink in this feeling.  I desperately wanted to remember this experience, so I could draw upon its serenity during times of distress (which, unfortunately, happens all too often lately).

When I opened my eyes, I turned to look behind me before getting up.  Before me stood a giant bronze statue.  I looked at it closely, and saw two men embracing and wrapped in some sort of fabric.  Of course, I needed to know what this statue was, so I stood up and moved closer.  It was The Prodigal Son, and the statue was of a father embracing his son.  

I sat for quite a while and looked at this piece.  I don't know the extent of others' religious backgrounds, but many people are familiar of the story of The Prodigal Son.  The gist is that a man has two sons, and gives them each their inheritance.  One son spends his money wisely and does what he is told.  The other son spends his money on wild times with prostitutes, and does not follow the wisdom of his father.  When the second son returns, the father embraces him and throws a feast in his honor.  The first son is furious (and jealous) and proclaims that the father never threw a feast for him for doing the right thing.  The father says "But it was appropriate to celebrate and be glad, for this, your brother, was dead, and is alive again. He was lost, and is found." Luke 15:32.

I think we have all had times like this in our life.  We know we don't do the right thing, and we worry about facing our fears and owning up to our problems.  On the other end, do we ever really embrace people that have returned "from the dead" and have become alive again?  It seems like this world makes people believe it is ok to rally against fellow man.  When we watch television or read any popular culture, it is celebrated to be lost and almost seems easiest to stay that way.  We don't readily embrace those that make the tough decision to live again after death.

I know I am not alone when I say that I have made bad decisions in my life.  I know each one of us has done things that were not good.  The key is in making it right, owning up to who you are, and facing the fear of humility and repentance.  This isn't even a religious discussion--I am talking about everyone of every background.  I can't say that I am a terribly spiritual person- I believe there are greater themes among all the religions that kind of blend together.  And I know that religion or spirituality isn't for everyone, but I do know that this story resonates with many of us.  We have all had times where we have gone astray--to the dark recesses of the world--and we fear how we will be received when we choose to come back to life.  I am fortunate enough to say that when I returned from my dark place, I was embraced by these same strong, open arms.

So, the journey was a productive one, but quite a realization as well. I came to see how far I had come through my life; how many ups and downs I really did have, and how I was welcomed home with open arms after everything.  This is a time in my life when I needed love and support more than anything, and I am truly grateful to say that I have received both in abundance.

Memories

I was talking to someone last night about memories.  We were talking about how vivid "good" memories tie us from the past to the future.  Through the course of a random conversation he said the word "clambake," and I literally had a flood of memories come back to me from my childhood.  I told a 20-minute long story about the clambakes my family used to host, and went into great detail about my childhood home.  It is amazing how a random word can cause such a chain reaction when it comes to memory.

This is something I haven't really dealt with since the accident and subsequent falls and medications.  The truth is, I don't remember at least a year of my life now, and there are other holes that appear to be missing.  I know that seizure medications can cause major problems with memory, and I know that I was taking well over the maximum prescribed dosage.  Experimental medications always make me uneasy, and I was on maxed-out dosages of that toxic ick.  There were so many chemicals pumped into my body, I imagine I am more preserved than Keith Richards...

I want desperately to remember my past.  Even if it was a difficult time, I want that connection to my life.  I feel like I woke up one morning and started a new life, and it terrifies me.  I was telling someone this last night, and we noticed that the brain has seemed to reset itself.  I hear that people have distinct personality changes after accidents--I feel like my mind was definitely affected, but my personality remains intact.

Of course, we have to factor in the divorce.  There is obviously going to be a change in personality when I became liberated, so I don't want that confused with recovery.  I will say that through all the difficulties I have had over the past six months, and probably even more, I have had an easier time going it alone.  I feel like I can really be dependent on myself, and that has proven how resilient I really am.

Back to the memories...  I went to the Traumatic Brain Injury Conference a few weeks ago, and it was mentioned that for the most part, people are able to retain a lot of information or their slate is wiped clean.  I feel like I recaptured an amazing amount of information, but I do feel like I am lagging behind where I should be.  I long ago abandoned the idea that life will be perfect and I would be a high achiever.  Right now I just want to be comfortable remembering normal things like names and my grocery list (the people at Kroger think I am crazy as I stare off into space in confusion...).  But, with the lack of name recall, I remember most everything from graduate school, and have retained an amazing amount of trivial facts.  It really is amazing how much random information I remember, but can't remember basic memories.

I think pictures have helped me out greatly.  I do love looking at pictures from years past, especially around the incident.  It's strange to look at them and either remember everything about the picture, or remark that the photographer must not have been me (even though I was the only one that could have taken the photo).  Either way, I feel that I at least have a link to the past.  In time, I will be able to sort through my memories and place information in the correct time slots.

I do feel like my life now is without a filter.  I feel like I feel things with more intensity, and notice more random detail.  I don't have a lot of comparison other than going off comments of friends and family.  They notice that I am very involved in the world, and am embracing the experiences around me.  I am not sure if this is typical of a person with a brain injury, or if I am really living a different reality.  Either way, I do like it.

Now that the memories have started trickling back, I have to brace myself for the emotions that are connected.  I will get these waves of intense memory and emotion like in the clambake episode, and it terrifies me.  I can have the most detailed and realistic memories, so much so that it almost feels like a dream.  I feel like Alice in Wonderland, where the reality doesn't feel quite real.  I wonder if this ordeal will even itself out, or if I will have to hold on for the ride.

I commented last night that I definitely feel like I am on a different level now--I feel like I am not as smart as I used to be.  I recall most of the information, but it feels like my processing speed is dramatically decreased.  Other people might not notice, but I do feel different.  I know I have all of this information in my head, but my body isn't responding as quickly as I like.  It is terribly frustrating, and I am not sure what I need to do about this problem.  I did become more sensitive in my work with gifted students.  A teacher commented today about how one of my gifted students was "one of the best and brightest of the school, so how dare he..." Of course, if we looked at teenage development, his reaction was right on the mark for his age group.  To expect intellectually gifted kids to always be superior than their peers is a major problem.  And now that I feel like I have "lost" some of my giftedness, I am particularly sensitive to the whole experience of being gifted.

Wow, this whole thing felt like a rant--almost a lucid dream.  I guess that is how memories work, and how the mind works in general.  The reality is that this miraculous organ called the brain works as hard as it can to make connections.  We just hope that the connections it makes are to reality--that these connections can help us rediscover our past, and help us determine our future.  If not, it's been one heck of a dream...

On Valentine's Day

I know I need to get back to normal posts about my project, but I thought I would write one more about my life.  In reality, my life is a big part of the project.  This journey is one of transformation, so all aspects of my being must be considered... Man, I have been sitting in academic/clinical conferences all day. :-)

Today I went to Nashville to attend the Traumatic Brain Injury conference.  Yes, that is the most romantic activity possible for a Valentine's Day...  I was a little skeptical about what I might encounter at this event, but I will say that it was an incredible day.  I talked with some very important people in the world of neuropsychology, rehabilitative medicine, and education.  I spoke with agencies that offered services, and with people that had been survivors of traumatic brain injuries.

I guess I was a little apprehensive about the whole ordeal because I hadn't really talked much about the effects of my brain injury.  I went back to work and have pushed on like everything was normal.  It was strange that today was the day I was able to confront it all--on the stereotypical day of sappiness, love, and shallow ooey-gooeyness.  I couldn't have asked for a more supportive environment.

I talked with a pediatric nurse about her experiences from a clinical setting.  I wanted to hear others' experiences before I spoke.  It was fascinating to hear how many people work in a setting that provides care to those with TBIs, and they themselves were survivors as well.  I was touched at how many people came to this event to learn more about such a devastating injury.

When I finally did tell my story, I remember feeling guilty.  There were actually a wide range of emotions: I felt angry that I had waited so long to really talk about this, frustrated when I figured out how many times the medical community had failed me, sad that this experience even happened, and then foolish when I looked around and saw I was one of the very few that made it through a decent recovery with very little visible effects.  I guess that is when I did get angry again, because it is frustrating to not have a scar or wound for people to see that I am still struggling at times.

Ok, that sounds childish...  But it made sense to a man I spoke with--he is in a wheelchair.  He coordinates services for independent living, and told me he has a friend that has a TBI.  I talked pretty openly with him about my experience, and how I feel it is hard to be out of a wheelchair and off a cane at times, because everyone looks at me and thinks I am 100% back to normal.  I know I can do my job and handle life, but there are still effects of the injury. And they are FRUSTRATING.  I am miserable at times when I can't remember silly things, my organization is out of whack, and I say the strangest things.  I guess I am trying to figure out who I am again, and being on tons of seizure and pain meds can confuse a body.  The hardest part is that everyone looks at me, sees how incredibly great I look after surviving all that mess, and tells me how lucky I am.  Lucky?  Yes, I am terribly fortunate that I am no longer in a wheelchair.  I am even fortunate that I no longer use a foot brace or a cane.  And it is amazing that I can even run!  But it is a challenge to deal with the organizational and memory issues, and to keep this "secret" from the rest of the world.  As you can imagine, the frustration causes mood swings.

Tears pooled in my eyes as I told him all of this.  I didn't know this man, but I was about to gush my life story-- ready or not.  He nodded as he listened, then reached out and hugged me.  It was a hug I had needed for a LONG time, and it was well overdue.

On a funny note, I had a random conversation with another agency coordinator.  It went like this:

Him: "You look like someone familiar."

Me: "Did I work with you at some time?"

Him: "No... Let me think..."

Me: "Did I go to school with you?"

Him: "No... still thinking..... I got it! Snow White!!"

Me: "You just might be the coolest man on this earth."

So, I agreed to eat lunch with him, in a somewhat-random series of events.  Because I guess that is how things work at a brain injury conference...

At the end of the event, I realized that this conference was incredibly helpful to me in my profession.  It also healed a part of me that I didn't realize was hurting.  I have been working on loving and accepting myself as I am, but I haven't really dealt with that period in my life.  I guess it is because I feel guilty with even feeling bad about it, because I am lucky and came out from it relatively unscathed.

Now I see that there was a lot about the whole brain injury ordeal that I didn't know.  There was a lot that apparently the doctors didn't know.  That helped me tremendously because I was able to forgive many people that made mistakes in the whole situation.  A whole lot of healing went on in that room.

"The more I know, the less I understand..."

I was in an absolutely wonderful mood on the way home tonight.  I had dinner with excellent company, and was able to relax a bit.  So, it was not typical for me to cue up my favorite breakup song, especially on Valentine's Day...

I have always loved Don Henley's Heart of the Matter, and many that know me will say that my one pet peeve in life is the radio mix of the song (it is a miserable butchering of a nearly-perfect piece of music).  I happened to listen to the song from the perspective of life--not just from a breakup.  I wonder how many people have actually sat down and thought about the song, not just as a sad breakup and "feelings" song, and more about one where we are evaluating life, forgiving, and learning to pick up the pieces, grow up and move on.

There is a lot of forgiveness that needs to take place in everyone's lives.  And the more we find out about things, the less we understand.  This is very true in the whole situation--in every situation. All the things I thought I'd figured out, I had to learn again.