What would I do now if I got to do it over.

Its been a while since I added to my blog, partly due to the long hours I keep in my present job.  I check in on some groups I belong to on FB and I find there are questions abound on how do I tell where the brain injury is located and what it affects and what I can do about it.  Many of the answers are within these pages so I recommend you check them out.

Here are some things I would do if I had life to do over:

As much as this seems ludicrous and might jam the doctor offices,

I would get an EEG before an actual brain injury occurred.  Why?
I met a doctor after my injury and surgery who chose to have me take an EEG.
What is he going to compare it too?
My brain is already damaged.
If I had an EEG on record before the actual injury then he would have a base line to run from that would show the differences.

I would get either a CT scan or MRI of my entire head and brain or better yet my entire body.
Why?
This would reveal all aneurysms before they ruptured.  So many people are walking around with them totally unaware of their existence until it is too late.  The aneurysm ruptures and 50% drop dead as a result.
Aneurysms can occur anywhere in the body.   Friends have died from Aortic aneurysms, Abdominal Aneurysms and of course Brain Aneurysms.

Is this realistic?  Will your doctor say you are nuts?  Are you a doomsayer?
I say its about time Doctors started Preventative Medicine.  What costs more?
An ounce of prevention or a pound of lifesaving, rehabilitative, lifelong costs to the medical services for treating the after affects of a ruptured artery?

You see, I'm not so Nutty after all!

Had I been scanned, though they did not exist until 1977(CT Scans), my ruptured arteries could have been fixed and my grades would have improved and maybe, just maybe, I could have been a Neurosurgeon instead of a Bread Delivery Man.
I'm not complaining, do not get me wrong.....What I am suggesting is that if my issue had been discovered before the mayhem, my outcome would have been so much different and so would the lives of countless thousands before and after me.  Some would actually have come back from the dead so to speak.

Now, doctors are being made aware by virtue of the sporting community, that head injuries need to be addressed.  Finally, kids are being told that contact sports have to be toned down until a certain age.  Good!
We are getting there.  Wear a helmet!  So what if it looks goofy, or messes up you hair,  its a far cry from being brain injured for life.  How does that look on your ego?  No short term memory.  That is the first thing to go in about 99% of all TBI/ABI injuries.  
How does "Stupid", "Incompetant", "You're faking it" "You just don't want to work." "You're lazy", "You're a Malingerer" sit atop of your head in place of that helmet you chose not to wear?

Oh, and the best excuse is......"It costs too much."  
Go tell that to a brain injured individual because they need some comical relief.

Sorry I got side tracked.

1) If possible get as much ammunition in preventing the TBI or ABI as possible.
 Wear helmets, Don't head a soccer ball as a child, drive carefully, don't drink and drive, don't jump into shallow water, you know the drill.   Follow it!   Tell Kids to do the same, who knows you might just save a life or 2.

2) If you are like me a survivor, carry some kind of medical alert bracelet, especially if you have aneurysm clips.  You might one day be unconscious and the unsuspecting ER doctor orders an MRI instead of a CT Scan and the magnets pull the clips out of your brain.  ooooops.

3) Take control of your health and know your body.  Your body will sing loud and clear to you.  Never second guess your gut instinct.

In 1974, I started to faint.   Well, that's a big sign!  I knew something was wrong in my head but my doctor didn't.

In 1977, I became motion sick.  Never had that problem before.  Now that's a big sign!  The Quack said it was my spleen.  My gut was saying, "ITS MY FRIGGIN HEAD".  I ignored it because the doctor knew best.

In 1977 I had an MVA, was unconscious for 6 hours.  Now, that's a big sign!  The hospital ignored it.   My gut said, PLEEEEEAAAAASSSSSE check out the head!!!!!!!  I ignored it!

In 1977, I got that motion sickness followed by the worse head ache ever!   MY Gut was SCREAMING,
CHECK OUT YOUR GOD DAMNED HEAD YOU NUMMITZ OR YOUR GONNA DIE!

I ignored it and so did my GP.

My MOM didn't and thank god for "mother's instinct", because finally her gut feelings kicked in and I am here as a result!

Eat healthy, avoid processed foods, use butter, stay away from Genetically Modified foods, shop the outer rim of the grocery aisles, eat whole foods, go to the butcher instead of the grocer.  Know where your food comes from.   We need to take control of our lives, our environment and each other if we are to improve our overall health.

It starts with you.

Disability and Me by loren gahala

Disability and Me by loren gahala

July 13,04 The fall of Icarus and the birth of Sisyphus.

If you knew my pain and the weight of my burden you would not be quite so quick to judge.

Disability is:

Disbelief!
Watching what's left of my personality be consumed by constant pain and frustration.
Trying to zip up my jacket five times before finally giving up.
Having people walk faster to get ahead of me in line at a restaurant.
Getting doors slammed in my face.
Balancing on a tightrope.
Going through the motions and putting on an actor’s smiling face.
Looking at my body and no longer wanting to eat.
Looking at my life and future and no longer wanting to live.
Being able to sleep but not being able to get any rest.
Losing everything that I love; that which made me who I am and being expected to carry on.
Simply trying to endure and survive.

Loathing the "friends" whose gratitude has grown old, those "friends" who enjoyed my prosperity but will not voyage with me in my grief”

The reality is:
The forced compromising of ideals and the lowering of standards and expectations.
Finding the disabled bathroom only to be for a right handed person.
Not being given the right of way when attempting to cross a street or parking lot.
Witnessing perfectly healthy people park in the handicapped space.
Dropping things more times than I care to admit or remember.
Struggling daily.
Having to ask for help for everything, simply because there is just no other way.
Having to re-tell my tragedy a hundred times to people who don’t even care or matter.
Wondering where the fuck all my so called friends are and have gone!
Listening to people bitch and moan about the most trivial things and wishing I would be so lucky as to only have those problems.
Disability to me is bitterness and jealousy.
Having hurt feelings along with everything else.
Living with regret.
Trying to get by on a fraction of my former income.
Becoming the invisible minority.
Reaching out only to find that so very few are there.
Wondering how much more I can take.
Just wanting it to be over!
Having become such a burden to my friends and acquaintances, that I very rarely getting invited or taken anywhere.

 "That Heartless"

Thanks Loren for allowing me to post this poignant, hard hitting, viewpoint on the day in the life of someone who has been on the other side.

If you have information, suggestions, links that may assist those living with a TBI or caring for one with one, please feel free to submit your letters to klm@memorybankinc.com 

Two Shades of Grey

Though this picture may not look too ominous to the untrained eye, the right side of the picture close to the skull that is darker in shading is the left side of or left frontal region of my brain that is "No More", or dead tissue that probably attributes to my short term memory and recall issues.  Still on the right side a white dot close to the skull shows the glow of the aneurysm clip.

Now

Here it is 2013 and unfortunately it seems to a greater extent not much has changed since I began my journey in late 1977.
Certainly, we have better technology.  We have several generations of improvements in CT Scans, MRI's and the awareness in sports has taken a great leap forward in acknowledging the consequences of concussions.
Mental health unfortunately has taken a back seat and is constantly being undermined by the powers to be in hopes to save a buck not recognizing the enormous cost of sweeping all of this under the table mentality.

If we do not establish strong treatment facilities, bring back hospitals that can house those in desparate need of constant care then we will see our society pay an awesome cost.
I have mentioned that back in the early 80s, the cost to Canada was over a billion dollars.  Now add to this the cost to society as we close treatment centers and house our most vulnerable on the streets or prisons.
The cost to do nothing but turn a blind eye to this sees a blight upon all of society.

I mentioned that the cycle is loss of income, divorce, drug and alcohol abuse, justice system and incarceration.   A hefty price for a little intervention.  We all pay because, the drug abuse is serviced by the gangs, the user needs to steal from cars or homes or rob stores.  They shoplift which costs all of us at a rate of about a 10% increase on the product to the end user.
Violent crimes, prostitution, gangland slayings, drive-bys and more are all linked to mental health issues.
whether you have a TBI,(Traumatic Brain Injury) and ABI (Acquired Brain Injury), or suffer from Schizophrenia, depression or any other mental health issue, without the facilities to accommodate you or you loved one, the crime rate will increase, the cost to house people in prison will increase and this becomes a cycle that need to be broken.
Please contact your local and federal governments and ask them what they are doing and why are they ignoring the plight of the most vulnerable in society.
This attitude of not in my neighborhood needs to stop.  Treatment facilities need to be manned.  Intervention and follow-up should occur at the outset of the brain injury and not at the end when legal intervention is the only recourse.
Violence towards women can be reduced if we prepare the family for what may occur post brain injury and the male loved one should not be released back into the home until he has re-learned to cope sufficiently with his injury.  We either house them sooner or we do it later at a substantive cost greater than had we intervened immediately   We could avoid, the B&E, the spousal abuse, the drug addiction and subsequent treatment, the legal costs of incarceration if we simply started the treatment

NOW

Anger

Many specialists will wade in on this issue with confusing double talk that might explain it but could simply confuse the hell out of you and leave you more enraged.  I made issue with the show “Golden Girls” and Stella back in my signs and symptoms section for a reason.  It is now common knowledge amongst the scholars that the last part of the brain to develop and often the first part of the brain to go as we age, is located in the frontal region.  This part is responsible for many things, behavior being one and another is planning.  We often wonder why our children act brain dead and take such dangerous risks that could kill them and the reason is that the wires have not fully developed where they start to take stock in the right and wrong of any given situation.  An example is staying out late on the dangerous streets at night because it is cool or skate boarding without helmets and making the bold statement that it’s my body and if I want to do it then I will.  They do not factor in that if they fall on their head and become incapacitated then society, the distraught parents pay the ultimate price by having to care for them forever.  They do not factor in the cost to their parents, of possibly wiping out their savings and retirement all for the selfish reason of it’s my body and I’ll do with it what I want.  This is normal behavior and fortunately it too does pass and as parents we give a big sigh of relief if they along with us survive until those neurons finally connect and a decent young adult emerges.

            Now think about this for a moment.  If you were to meet me I would look like an average guy.  There are no telltale signs that I am brain injured.  Most psychologists would aptly diagnose my anger as easily managed with some basic coping skills.  If he was not aware of my previous brain injury he would apply the same treatment on me as he would a non-brain injured individual and that would be his first mistake.

            My anger is not an issue that comes from the norm of a bad upbringing where I was beaten but rather because the pathways that once led to my frontal brain have been altered or completely severed.  Many problems are happening simultaneously to a brain injured person and the caregiver needs to fully appreciate this.  Those coping skills of life have to be re-introduced and rewired in many cases.  The time it takes a non-injured person to learn new coping skills will be a great deal shorter than that of a brain injured.  It is a Pandora’s Box of emotions from crying, to depression, to despair, to elation and of course anger.  All of which need to be addressed and it is no easy task.  One cannot separate anger from the rest of the issues.  Anger is a result of the many internal problems that a brain injured is facing.  He/she is angry because they recognize that they cannot speak properly, can’t find the words quickly enough, forget constantly, their balance is lost and the list goes on.  The caregiver has no coping skills to deal with this scenario and may accidentally remark, why can’t you remember and that triggers an anger outburst the likes you’ve never seen before.

            My point is this, the brain injury and anger is very complex.  One cannot separate anger without identifying all the triggers that bring on the outburst in the first place.  This will take months of testing and rehabilitation.  We have to rebuild the pathways and re-educate the brain injured so that he/she has an understanding of what the triggers are and how to better deal with them.  It is imperative that the care giver learn as much about the brain injury as possible if they are to survive this ordeal in tact.  You will employ the same techniques for dealing with the brain injured as for the non-injured however if the instructor is not familiar with brain injury he or she may alienate the TBI patient.  Remember the TBI survivor may be dealing with memory issues or permanent damage to the frontal lobe.  The anger may not be easily controlled as a result and therapy may take many months and not just a weekend retreat that might be prescribed for non injured counterparts.

Half Full is a great starting place

I may have been hard hitting in my last blog with regards to fellow TBI survivors who feel they can make it on their own.
Allow me to clarify my position for you.
In life we do not get to where we are without feedback and help.  We start with our parents guiding us, enrolling us in sports, school, music and from there we begin to network.
We gain employment through our efforts and referrals.
From those referrals we learn of better career choices and climb the ladder of success.
We also have setbacks along the way from scraped knees to broken hearts and someone is always there to help us back onto our feet.
Why should we think it should be any different when we are suddenly brain injured?
After the brain injury it should not matter why or whose fault it was but rather how we can overcome and what resources will we need to tap into to ensure the best outcome for me.
Why in your time of your greatest need would you abandon all that have used in the past, your networking skills, and choose to go it alone?
Yes, it is a new endeavor and yes it is frightening or even embarrassing to admit you need help from the last place you thought you would ever be, however it is a resource and you will benefit.
Let's face it, brain injury will conjure up the "One Flew Over The Cuckoo's Nest" mentality in some less educated people.
Mental health in general has some pretty negative overtones that can frighten some people.  This is born from a lack of understanding.  Some friends may abandon you out of this reason.  Not to worry because throughout life you will gain some friends and lose others. Why would you think it would be any different now?
The new friends will understand your needs and stand by you rather than toss your aside.
You are not a freak show.  You are simply brain injured.  You may have speech, memory or mobility issue but you are still you and are desperately important to your family so you owe it to them and moreover to yourself to at least give it your all.
It is in the end, a new career choice, fraught with all the uncertainties, like riding the bike for the first time or the new job or getting your driver's licence.  Look at it like it is, a challenge, one you will overcome, and most important it is one you will master to the best of your ability.
Is your cup half full?
It is incumbent on you to see that it is because so much is riding on your recovery and your loved ones are counting on you to have great hope for the future like you did before the accident took place.

Help! I have a TBI!

The sooner you can get help for your TBI survivor the better.  I have rarely met a survivor who jumps at the opportunity to join or attend a Brain Injury Group.  Ego being the mother of missed opportunity, will cause your loved one, time when it comes to recovery.

If he, and I mean he because 9 out of 10 times it is the male who will argue, I am not as bad as them why do I need to attend?
This bravado is a defense mechanism.  I actually joined in hopes to help other survivors because it had been 15 years since I had been injured.
To my surprise I learned more about myself in the process and enjoyed my time so much I eventually became President of our Brain Injury Society.
It offers support for the caregivers and lets you know that you are not alone.  The society will also have resources both locally and provincially or state wide, that you can tap into.
Things like attorney's who specialize in brain injury.
Why do I need an attorney trained in TBI?
Some lawyers will settle a case from an MVA, and state that the person will be healed up in 2 years and so you are compensated for 2 years and no clause for long term disability was considered.
What if scar tissue builds up and another surgery is required?

So help is most crucial at every turn.

I found that it was so nice to attend a group where I could contribute to with suggestions like the ones on this blog and in turn receive suggestions that might just work for me.
Yes there are people in the group that are far more injured than yourself and there are those who are less affected. The great thing is you will feel like you belong.  It is a place where we don't mind if you stutter, have mobility issues or anger issues.
The mere fact that when you arrive you are accepted as is, will make you feel at peace.  You don't have to explain yourself each and every time you forget. It's understood.

For the caregiver, it will be a place to network and a shoulder when things get tough.  Our group has assisted from giving food and clothing to getting the right medical assistance for you or your loved one.

If there is not a group in your town then check online to see where one is.  You might even decide to start one.
Ours started out of a home with a handful of people and now has hundreds of clients and is partially funded by the provincial government.  The only thing I can warn you about is that when you decide to start one get ready to be overwhelmed by how many respond.

What if my TBI survivor refuses to attend?

Well there is nothing from stopping you.
Second:  Get him to read this page.
MY SPECIA;L NOTE TO MR. TBI.

I like you are brain injured.  You have everything to gain and nothing to lose by attending your local brain injury support group.  If you truly want to heal, have a productive life, not lose your wife, avoid the 90 percent divorce rate that your fellow brain injured survivors enjoy, then if that is nothing for you to lose continue on with your head in the sand and have a great life.
If you can appreciate the fact that your wife is standing by you trying to help you back on your feet, don't you think you owe her a little respect for all she is sacrificing for you?
Don't hesitate and Join today! It may just save your marriage let alone your life.

Did you know that now that you have suffered from a brain injury you are twice likely to suffer a second before someone suffers their first?  Lets keep it to one and learn how to cope.