Sunday, April 7, 2013


I am coming clean.  Only a few people know about my little secret.  I am writing this in the hopes it will help someone.

I am not normal.  I may appear to be so, but I am far from it.  The more time you spend with me, the more you will be able to pick up signs that there is something wrong.  And, there is.

You see, when I was two or two and a half years old, I got really sick.  With bacterial meningitis.  I almost died in the hospital.  Because I was so young, I do not remember the time in the hospital, nor what it was like to have a normal brain.  As a result of the meningitis, I suffered from seizures.  I was put on medicine, but only for a few years.  By the time I was eight years old, I was off of the medicine and free from seizures. I not only suffered from seizures, but I also suffered brain damage.  I don't know which side of my brain is damaged, but I do know the effects of it.

Someone mentioned that I do a good job of hiding my disability (if you call it that, and I will for lack of a better word).  I want to say that I don't  hide it; I cope with it.  The damage is with me every single day, and sometimes when I am impatient with myself, I have to remind myself that I am not normal.  I am not up to everyone else's mental capacity. Sometimes, it's easier for me to deal with myself when I do this.

My mom said that I had reverted back to having the skills of an infant.  I had to relearn how to walk, how to talk, how to hold a crayon, how to feed and dress myself.  It took years, especially with my speech.  Even today, I will pause and say another word because I'm not sure how to say the first word.  Like pearl.  I just cannot say that word, and I stumble over it.  and question.  Sometimes, if I'm not careful, it will come out Kestin.  I remember being in a room with a therapist while everyone else was on the playground.  When I was allowed to play at recess, I didn't know what to do.  I was used to sitting on a chair (maybe at a desk?) and repeating the words the therapist was saying or reading the card I was given.  I was in fifth/sixth grade when the speech therapy stopped.  However, my spelling and reading skills were high above the rest of my class.  I was reading middle school books by the time I was in fourth or fifth grade, and was graduating to the high school level by sixth grade.  And, of course, by the time I was in junior high, I was reading adult, or as much as my mother would allow me.  A secret with spelling?  I visualize the words, and that is why I am so good at spelling.  Sometimes, when I am listening to music, I will close my eyes and visualize the words that I hear.

I am a huge fan of Easter Seals.  My mom said they were the ones who helped me the most.  They encouraged me for the effort, not the result.  I will be forever grateful to my therapists who saw the potential in me, who never gave up on me.

I knew something was wrong with me, but I grew up with therapists, especially speech therapy, and I figured it was normal.  It wasn't until I was in my mid 20's that my mom told me I had brain damage.  Suddenly, it all made sense!  Why I had to have speech therapy (I had long forgotten the physical and occupational) and why I have such trouble in certain areas.  A couple years ago, I did research online about my brain damage, and my eyes were opened.

Cognitive, physical, and other symptoms that I have are

Difficulty processing information.  When there's a lot of information coming at me, I get overwhelmed, and I can't process all of it, not even half of it.  I find this particularly true in all day trainings, trainings that are required by DPW in daycare (not all day, but a certain number of hours).  I come away with only one or two things to do, not the whole picture.

Difficulty in expressing thoughts.  I know what I want to say, but I don't know the correct words, and I get the other person confused.  Or I don't give all of the information or directions, yet it's in my head.  I call this a disconnect from my brain to my mouth.  The words are in my mind, but they just don't come out.  When I talk about this, others have said that I make myself understood.  That's not what I mean.  I get words mixed up.  I will say brown when I mean to say black.  I am at a loss for words quite frequently, and I will lose the name of an object, like swingset.  I KNOW what it is; I just can't say it.  Which is why writing is so important to me.  The words that I write are what is in my mind.  I am saying what I mean.  Writing is my form of conveying my thoughts.  I don't have a disconnect from my brain to my hand.  The words flow out of me, and I write what I want to verbally say.

Difficulty in understanding others.   I am a visual person, and I can understand more through reading rather than listening.  Sometimes, my co-worker will tell me something, and I will do what I think she said.  Only until after I've already done it will I learn from her what she actually wanted me to do.  

Shortened attention span.  I find myself in church, listening to the pastor, and then, my mind starts to wander.  I also find myself tuning out after a prolonged conversation.  My attention span varies.  It can be from 10 minutes to 20 minutes.  I don't mean to do this; I just can't concentrate.  I really want to pay attention; I am just unable.  Unless there is action.  More than just hand gestures or the pastor walking around on the stage. The more action there is, the more I am able to concentrate on the person talking.  Maybe that's why I like action shows and movies.  And I cannot just watch someone standing on stage singing or playing an instrument.  There has to be varied action.  I am like this with tv shows, movies, etc.  Even if it is a half hour long, I cannot pay attention if there is not a different scene every few minutes.  My mind starts to wander, and, if I am home, I will do something else, like play games on the computer.  Until I learned the symptoms of brain damage, I was really thinking I had ADD.  This explained a lot to me.

Inability to understand abstract concepts.  Like Algebra.  The more complex it is, the less I understand it.  The more directions, the more confused I become.  I am not good at  helping kids with Math.  I never could figure out the simple math without a calculator.  The harder it is, the less I am able to do it.  It doesn't mean I don't try.  I do my best, and I will keep trying and wondering why it's so easy for others and I can't do it.

Impaired decision making.  I hesitate when bombarded with emergency decisions.  And I hesitate even more when it comes to decisions that are huge, like life-changing.  Sometimes, the decisions I make don't make sense to you, but they make perfect sense to me.

Memory loss.  This is definitely one that gets on my nerves in a big way.  I cannot remember conversations, events, anything.  My childhood memories are only a few, and when I do talk about my childhood, it is repeating what I have heard.  People come in and out of my life, and eventually I will forget about them.  I might remember their name or their face or something about  them, but I can't tell you how I know that person or when we met.  Friends have talked to me about an event, recent and years ago, and I don't remember it.  I know I was there, but I don't remember who else was there, what was said, or anything else.  I make promises and fail to deliver, because I forget I made that promise.  When I say that I don't remember, I am being honest.  Please don't be hurt.  I don't mean to hurt you, but the memory has completely been wiped out.  Others have teased me about this, and I even joke about it.  When I know it is in good fun, I can have fun with myself.  If I know it is meant to be hurtful, then I will grieve over my inability to remember.

Spatial disorientation.  I have a problem judging distances.  And directions, like North, east, etc.  I get lost very easily.  I recently hung a frame on the wall.  It took me over an hour to get it slightly crooked, even with me measuring.  The nail was either too far away or too high or too low.  By the time it hung, I didn't care that is crooked, and it is still crooked today.

Balance issues.  I thought maybe this was my ab muscles not getting used.  Perhaps this is true, but I also find myself climbing steps and suddenly going off balance.  Maybe that is why I sprain my ankle a lot, because I can step on a small pebble and lose my balance.

Seizures.  I no longer suffer from them.

Irritability or impatience.  This is mostly on myself.  I might not show it, but I get irritable and impatient often with myself, especially when these symptoms are showing themselves all at once.

Flattened or heightened emotions or reactions.  I think this is also a coping mechanism, as I don't show my emotions very well.  But, now I have another reason!  I also do not react to things like everyone else does.  I might seem cold, but I'm not.  I need time to process everything, and then I will react or allow myself to feel emotions.  Usually at night, when I am alone.

I hope this explains some of the things that you will  notice should we meet, or if we actually do know each other.

One thing that I look forward to is a verse that says that God will heal everything, diseases, disabilities, everything.  This includes my brain.  One day, I will know what it is like to be normal, to not have these problems anymore.  Yet, I wonder, when I am healed in Heaven, will I still have my gift of writing?  Or will I lose that ability?

I am debating right now whether or not to tell my older kids about my brain damage.

There has been a blessing with my brain damage.  It makes me more patient, more kind, more empathetic toward others who have disabilities.  And, one day, maybe the Lord will send someone in my path that will benefit from my experiences.