It's been a long road traveled since December 24, 1997.  I've found more obstacles in my path than I ever expected or even dreamed of finding.

I am still amazed at the ignorance about brain injury and even more so when it comes to finding doctors and therapists that deal with brain injuries.

The politics behind this injury isn't any different than any other disability.  It is pure ignorance just like the others.  We will have to fight for our rights and teach others about the pitfalls along the way. With a brain injury, this however can be quite a struggle in itself.

I for one find that having to explain this injury in full detail every time you run into a snag gets to be quite old.  With short term memory stuck in there also, this can be quite a CARTOON in itself!  (or is that more like a DRAMA)?! 

Most people don't understand about this injury at ALL.  And when someone looks at you and you LOOK fine, and you can TALK, and you can WALK, and they can't see any physical damage, they think that you are just full of it! 

Well, I'm telling you from FIRST HAND experience that is NOT the case!

I've been in and out of doctors, therapists, state agencies, and my own primary care physician (who by the way said I needed a SHRINK).  And it wasn't until just recently (April 2000) that I finally found a doctor who told it like it IS! 

This was no shock to me!  I've known in my heart all along what was going on, but because I don't have an MD or a PhD behind my name MY opinion didn't mean SQUAT!  Now isn't THAT a shame since I have a BRAIN INJURY, I haven't lost ALL my marbles.........just MISPLACED some of them!

I've been off the Phosphatidylserine that I was taking since the first week in December 1999........and it has been HELL!  Believe me when this is all said and done I'll be back on that nutrient so fast that poor Deb behind the counter at Spring Valley Herbs won't know what hit her as I fly by her to grab it off the shelf!

Trying to deal with LIFE since TBI without help is hard enough on its own. But trying to deal with life without any AID is even worse!  This is NOT an injury that can go on without some sort of support in your life. And I'm not just talking about your family and friends.  I'm talking about DOCTORS, ATTORNEYS, THERAPISTS, VISION SPECIALISTS, and the such.

These are the people who make our lives more BEARABLE!  These are the people who can bring some SANITY into our lives!  I've found that the more you have in your corner, the better and more efficient your life will run!

I have finally after almost 29 months found a neuro who has told me that I would never be able to work a 40 hour work week again.  (Like I ever worked one BEFORE the injury!  I'm a TRUCK DRIVER!  I WISHED I could have worked a 40 hour week)! 

I've been told that I would never be able to even work Part Time with someone else.  I would have to find something that I could do where I could be my own boss and set my own hours as the overload gets so bad at times that I'm left to stay at home and watch the 4 walls or do that Discovery Channel thing for days on end just to try and recoup some! (some interesting things on that channel by the way)!

So, here I am, 43 years old (44 in July) and I've all of a sudden got to figure out what I could possibly do where I could use my BRAIN fairly intelligently and try to stay sane at the same time!  Boy, now they never said life with a Brain Injury was going to be EASY!  But I DO think more than one doctor has told me that, "Things will be fine in a few months!" Yeh, and where are those doctors now?!  Well, they're not on my list of WHO to go to with a brain injury anymore, that's for sure!

So, it all boils down to this.  Somewhere along the way I will be able to slow my life enough to try and find something that I can do to keep me busy and hopefully USEFULL to myself and others, and GO WITH THE FLOW!  On this endless Roller Coaster of hills and turns which change daily and some times multiple times daily, I've still got to learn to just GO WITH THE FLOW!  That's almost sad, but that seems to be the best advice that I can give anyone. 

I'm a perfectionist (not compulsive though so relax!) so I may work harder to get things back to an even keel than some maybe, and although that can make a day extremely stressful, in the long run I think it helps me more.  I have had to learn how to spell all over again (and STILL am by the way), and trying to learn to BITE MY TONGUE, which was hard enough to do WITHOUT a brain injury!  It's even harder for a TBI'er 'cuz that part of the brain in a lot of cases such as mine has been damaged, so now we've got to try and learn it all over again.  

I still have mood swings that can make even the worst case of PMS look EASY! I live with at least 2 timers on the stove so when I have more than one thing cooking at a time, I don't burn it.  (we won't even GO there as that's another whole story in itself)!  

I have a spot on the kitchen table that is just for ME!  Don't try to cover that spot up as I'll forget everything as everything just seems to BLEND together if you put things around MY spot!  Anything that I need to take with me somewhere goes in that spot so I don't forget to take it when I leave. 

I'm learning to try and do things as they come up and FINISH them at the same time as that is very hard for most tbi'ers.  I am normally a very organized person, but I have to struggle so hard to remain that way since the injury.  So, I am learning ways to compensate for these deficits that seem so trivial for most people but are MOUNTAINS for those of us with brain injuries.

But there is also a good side to this, if I can say GOOD in the same breath!  There is sort of a Calmness about this injury.  Things that seemed to set me off before don't seem to be as extreme.  Things that I would think would rattle my cage just seem to flow naturally.  But SMALL THINGS?  Oh, boy!  Now THAT'S another ball game!

Don't ask me why, but it seems like that SMALL STUFF just makes my blood boil!  I guess I'll still have to learn that KISS means more than just that!  It means:

Now those are WORDS TO REMEMBER!  And although I hadn't heard that before my Aussie buddy Tony wrote them on an email post with TBINET.org (which is a great list by the way for TBI'ers and their families and friends) I think those words speak more truth in our lives than not! They are words to live by.

What you need to remember about TBI'ers is that we may LOOK fine, and we may TALK fine, and we may even seem to FUNCTION fine.  But what you DON'T see are the hidden deficits that we have learned to try and cover up and hide from the general public.

I don't mind telling someone I've had a brain injury.  Why hide it?  If they follow me around long enough they'll see it themselves.  But I still try and hide the things that I know make me seem "different" or "dumb" to someone else.  In my life, I functioned at a different level than I function now.  I could go for hours upon hours without sleep and still run circles around some jerk out there on the road who thought his stuff didn't stink!  It was a spontaneous reaction with me.  I KNEW WHAT and WHERE and HOW his mind worked sometimes even before HE did!  And that SCARED people!  (sometimes even scared ME)!

But since the injury.  No, I have to be honest and tell you that there are a lot of things that I still do far above other peoples levels, but that's because that part of the brain still functions.  But other simple things like, fast thinking, spontaneous reactions, clear thinking, remembering something without writing it down even if it's just to go to check the mail.  Just normal reactions, laughter, smiling, just going to Wally World to do some shopping.  Those are the things that have changed in my life. With a brain injury like mine that also involves the vision, life is totally UPSIDE DOWN!  And although I may have learned to COPE with some things, I'm still learning ALL THE TIME!  And trying to cope with the changes, and the disappointments too.

There are too many changes with this type of injury on a daily basis that stop you from planning "normal" things.  Because if you have too much stimulus the day before, or you have too much stimulus for a couple days before, you may find yourself set back for days if not WEEKS!  Yes, it's not because you can't DO them anymore.  It's just because the BRAIN does not read them correctly (or SEND them correctly) and put the orders in the right place.  So, you have a "messy room" upstairs, and the cleaning crew is having one hell of a time trying to find the "plug in" for the vacuum! 

Now THAT makes for an interesting story!

So hang in there if you're a TBI'er.  And if you're NOT?  Well, LEARN from us!  We don't have to always be SHOWN something!  You just might have to learn how to SHOW us ANOTHER WAY!  That's all!

This says it all! (got this on a TBI email post and it's some GREAT advice......just can't remember WHO sent it in..........oops)!