April 13, 2003

Reflecting over my life the past 5 years, 3 months, and nineteen days, I have to stop and look at all the recovery I've made since my brain injury.

When I actually stop to think about it, I see a big difference.  But in every day life, I only notice the things that still bug me and make life hard to deal with and function at times.

Many of these things seem "trivial" to those who have never had a brain injury.  They look at me and think, "Well, I don't see anything out of place!  What could she possibly mean?"  It's those comments that keep me frustrated at times trying to explain to others that things are different!  That our feelings and symptoms are not less meaningful just because we "LOOK FINE".

The frustration with a brain injury is too hard to put into words.  I have been trying for over 5 years!  The system is still at a "dark age" level. Although there have been many strides made, most doctors and therapists are still at the "dark age" level in their treatment.  That is the sad part.  To know that there are actually treatments out there that could be so useful to us, and then to find out that you can't get that treatment because of the "politics"!

These new techniques are so out of reach for the "average" BI'er. Between the "distance" and the "insurance" or "lack of," we won't be able to obtain anything like this.  It's not because "WE" don't want them!  It's because the "system" won't let us even try them!  They think the "old ways" are the best.  But who is to say?  Do they have this brain injury? Are they fighting just to "function" in every day life?  NO!  So, who should be the one to judge what and when we get therapy?  HMMMM!  Are you beginning to see the battle, the struggle that a BI'er goes through?  Not only for a few days or weeks, but an entire lifetime!

So, who relieves our pain and anguish?  It surely isn't the courts, or the doctors with there so called "dark age" therapy's.  I am so tired of hearing of the "supposed" things that would make my life more bearable on a day to day basis, just to find out they are beyond my grasp.  They are not "legal" yet, or they just don't have enough medical studies done on them yet.  Has anyone asked ME if I would consider being that "guinea pig" for those trials?  NO!  Not even!  Usually the comments I get are, "We just don't have enough state funding to help you, sorry!"

So many have put down stem cell research, but have they really looked at the advances that this research can do for those of us who are brain injured?  NO!  They think of a child/fetus who is being "grown" for scientific study.  This is NOT the case at all!  These cells have no "male/female" dna.  Life starts at "conception," and there is no conception because these cells are just that.....CELLS!

It's kind of like the homeopathy type things that they have been doing for hundreds of years.  They found out years ago that if a human ingested the "enzymes" of a raw thyroid or liver from an animal raised with no "synthetics" or "antibiotics", that those enzymes go directly to the part of the body that recognizes them. (a great thing God gave our bodies the ability to do)  They become part of that "human" who has ingested them.  They then begin to "repair" and "restructure" the problem areas.

Now, how can anyone say that is bad when there is a life out there who is beginning to HEAL from something that was wrong.  And we have used something "natural" to do it?  Is this age of so called "wisdom" gone sour? Have we begun to think that God's original plan for us is no longer valid? Have we begun to think that only "man" can come up with something that is better?  HARDLY!  Where are the "old time" remedies?  And why have they been thrown out the window so quickly?

I still believe that things like "Phosphatidylserine" are one of the greatest advances to a BI'er, but the cost will run you into the ground in just a few months. (averaging $70 per 60 caps)  This is something that has proven more and more to be of benefit not only to those who don't have a head injury, but to those of us who do, and this non synthetic, soy based product has shown that it can even help the IQ levels!  

Now, why isn't this being prescribed?  There are no "side effects" known to man, so why not?  Because it's a "natural" product.  You can't get insurance to pay for it...because it's a "natural" product.  And when you don't have something that you can "patent", you run into insurance companies not paying or even wanting to LOOK at it.

So, what do we do?  I haven't the foggiest idea, but what I "DO" know is that I'm not going to give up on asking about new therapies and research.  Writing whomever I have to about such therapies and research.  I'm not giving up on ME!  Doesn't that seem to be how things work now-a-days?  Look at Christopher Reeves!  It's not the DOCTORS that are pushing him for new therapies, studies, etc.  It's Christopher himself!  But the average BI'er doesn't have money, so where does that leave us? Waiting!  Wondering!  And HOPING!

Before you look at someone who is disabled and think to yourself....."They LOOK just fine!" Ask yourself....."What DON'T I see that is an underlying problem?"  What can "I", as a human being do to help make their life better?  What kind of "improvements" can I make in my every day life that could affect these people?  How about VOTING for starters!  So many laws get passed and we don't even know what they mean.  We haven't even read them.  It's those "hidden" things that get shoved right in with another bill that end up affecting us more than anything.

There are a few small things that would help my every day life since BI, but I'm the one who gets shoved under the rug because of the budget cuts and lack of funding for my special needs.  Because I "walk" and "talk," I have been pushed aside to fend for myself.  If I was in a wheelchair or had lost one arm or leg, I would be treated differently because you can "see" these deficits.

I LOOK fine!  It's just the "computer chip" has gone awry, and the program has begun to "malfunction."  This is causing more havoc than you will even begin to know.  My blood pressure is doing strange things, my sugar has followed, along with some very important parts of the brain!  OUCH!  These "parts" aren't working correctly because of the trauma to the brain, and they're finally "talking back!"

I think this is the part where they talk about the "limit" or "cap" on the longevity of human life.  The part that says a BI'er can figure the loss of at least 6 to 8 years off the top end of their life?  Hmmm!  Is this the part that we suffer because we have no control over our own destiny?

I'm not angry that some idiot who shouldn't have been out on the road driving in the first place, hit me!  Well, I still joke about getting just 5 minutes alone with him on a dirt road with a baseball bat!  But really? How can you blame someone who is totally "clueless" about himself, let alone "life" in general.  That's like fighting someone who is totally unprepared for the battle, and comes to the battlefield with "boxing gloves!"  It's almost too funny for words!

I still have my up and down days.  I am constantly struggling to try and find enough energy to do some of the simple things in life like, go to the grocery store without spending 3 hours there because everything just "blurrs" together, and being totally exhausted from all the lights, sounds, and interaction I must have with people.  But, I have decided that I'm not going to shut myself up just because of that overload.  It's a decision I have made, and I'm sticking with it.  Of course, I find that I hibernate more and more as my energy level decreases, but please note, that's not from depression, that's just for "survival!" I have to do that to "survive" in this world.  It's not by "choice."  It's by "necessity!"

You see, I haven't lost "ALL" my functions!  I still know when I'm overloading, I just can't do a lot "about it!"  Except stay at home, do "no brainer" things, or just "nap" if I need it.  My brain is like that computer that has locked up, and when it works, it works.  When it doesn't, it just doesn't.  I have no control over the "keyboard", but I DO have some power over the "electricity" that it gets! (yes, I'm smiling)!

A BI'er usually has very low energy levels. It's just because the brain isn't functioning correctly, and when the brain doesn't function correctly, it runs and runs and runs trying to connect the "dots," thus using tons of excess energy that normal people still have in their storeroom.  We can't do much about it, we just live with it.  So, when you run into one of us and we're having a hard time trying to explain something to someone, or get directions so we don't get lost?  Just remember....think of a computer chip that was damaged.  When the program tries to upload a new file, that damaged chip can't read the computer lingo.  It tries, but just can't work it out, so it crashes.  This is what our brains do at times. We don't want them to, it just happens.

Don't DO things for me because you "can!"  Do things for me because you "want to!" Or better yet?  Help "ME" to do them!  You'll have to have patience, but it just might be a good experience for both of us, and a learning thing that we can reflect on later.

My thought process has been greatly reduced the past 4 or 5 months, and I'm trying to be patient with the doctors while they try to "figure out" how to compensate.  I'm sure if you've read the previous updates, and then this one, you may wonder what's up?  Well, don't feel alone, 'cuz I feel the same way myself.  I'll let you know when I figure out what it is. I really have hated this "foggy" feeling that I've had for months now.  It's getting old really fast, and I look forward to the day that "this too shall pass!"

~ barbara jean ~

June 2004