Some more Poems from a fellow survivor.

 Tears of a Chef

They say that passionate chefs only shed tears
When they would like to feign great failure.

How false it is what they most treasure;

How confused, ignorant, and vulgar they must be.

If my cries could reach my stockpot,

Reaching yet all the way to my sauté pan.

With this trembling hand of mine my tale could be written.

In tears a menu I would write,

And if my menu could not be seen,

For need of a darker ink

Black is the color that I’d choose, because it best reflects my bitterness,

anger, and frustration.

Even though I still dream of Grand Cuisine

The heartbreaking truth is that my arm no longer obeys me.

I cannot dream when I am so deeply entrenched in melancholy, sadness, and despair.

I have died but am still here.

Relight my fire I would like, but my tears keep putting out the matches

                                                                                                                                                           L.G.

 "That Heartless"
lg

Holy Crap! Two Posts in One Day!

When do you know it is permanent?

The short answer is not in the next few years.

Before my brain surgery, I failed at math and for that matter most every other subject.

After surgery I passed math with an "A".  It was math 11....Algebra.

I was to say the least, SHOCKED!

So there is hope, post injury.  With the new technologies such as hyperbolic chambers and music therapy and a host of other cutting edge technologies such as stem cell research, maybe one day we will have a cure and regrow lost brain tissue.

I believe the hardest part of brain injury is when is enough?  Enough?

I beat myself up regularly when it came to my lack of memory for certain things.  I even started my last blog with a tongue in cheek reference to how my truck's memory was akin to my own.

I find several things come into play and these signs will greatly affect my behavior with regards to whether I respond appropriately to a given situation.

Am I having a bad day with remembering?

Is my wife getting frustrated with having to go behind me turning off elements, closing cupboards, telling me where my coat was left etc?

Am I overtired?

I can read into these moments and determine whether or not it is time to call it a night or for that matter a day.

Quite often I need a "Time Out".
A power nap to recharge my batteries.

Accept this caregiver and brain injured alike, it is the new norm and in the early stages it will be paramount to the healing process.

Acceptance is the hardest part of the equation.  Here it is 36 years post injury and I still get frustrated at my inept abilities.   It becomes even more pronounced when someone like your wife or doctor, or co-worker rubs salt into the wound inadvertently.

As a child of 14 or so my mom would continuously berate me for not remembering to take out the garbage like I said I would.  I was always on the defense protecting my pride against laments of being lazy, a malingerer or a no good bum.

It kind of stung back then and though I have worked hard all my life, been an industrial first aid attendant in a Saw Mill, worked on the green chain, owned a restaurant, held this recent 12-15 hour a day job where my first break comes 11 hours into the day where I have my first meal as I drive the 1.5 hours back to my town of origin, I become a tad irate when someone accuses me of incompetence because I forgot to remember one thing.  It may have been important to the client that I remember to cut or add product for a sale however in my books it is still an attack on something I have been defending  most my life for something I have absolutely no control of.

This is my life and it comes with ebbs and flow's and I will be forever brain injured.  I reflect sometimes and realize that I have been so, for most of my life and for certain, all of my adult life.  One can never give a specific timeline or say for certain that the brain injury is permanent until it persists after several years.
What one can hope is that one accepts, quickly, the likelihood, of its permanency, and moves forward in a positive manner to mitigate its affects on your lifestyle.
How can one adopt new tools to reduce the memory loss or the mobility loss? How can one identify when one needs a "Time Out".
How can the family adjust to assisting in a positive way to increase the independence of the brain injured?
It is up to the entire family and the brain injured to work together and a note especially to my fellow brain injured, "Lighten up! It is not a sign of defeat to accept help.  It is a sign of healing to employ whatever it takes to make your life richer and if that gets you to independence, then so be it!"  Use whatever trick in the trade you can to make your life more functional and bearable.

ASK FOR HELP!

Eureka! Brain Injury Defined????

I was driving my 5 ton truck with the cruise control engaged when I needed to make a right turn off the highway.  I disengaged to cruise control and made the turn and started to accelerate and then re-engage the cruise control.
As I did so the cruise control forgot what speed was originally set and settled on one that was 10K slower than the one I was at previously.

I had a chuckle as I realized the truck had as good a memory as I.

This isn't the answer to the definition of brain injury but it does help to have a sense of humor and not take your brain injury so seriously at times or you will find yourself all alone, frustrated and filled with anger as a result.

One can ask a doctor to define brain injury and unfortunately with all his degrees and devotion to healing the sick and injured, the actual role is not one to specifically define brain injury but rather to redirect you to a higher skilled individual.  Most doctors only get a smattering of education on brain functioning and are mostly trained to identify a possible brain trauma and then make referrals.

You may ask a neuropsychologist what brain injury is and you will be given a plethora of possible outcomes psychologically that the brain injured may present with over ones lifetime, yet, still no definition of what brain injury is.

You may ask a neurologist and would be introduced to a highly trained individual whom, like ones previous colleagues, would impress you on his or her expertise, and might be even more impressed by his or her bilingualism having spoken to you in both English and Latin, but alas no definition of brain injury.

Finally you may need to employ a neurosurgeon, the highest form of skilled purveyors of curing those with a brain injury, however still inept at defining brain injury.

PLEASE do not think for a moment that I am not grateful to these men or women who devote years to their profession in hopes to heal the less fortunate of the brain injury class.
I would not be here had it not been for Dr. Mackie, Dr. Cameron, and the wonderful nurses on 4 West of the Royal Jubilee Hospital back in 1977.  Without them I would not have the quality of life I presently have.  In fact I most likely would not have life at all.

Each and everyone of them are an asset to their profession and to the countless lives they in fact save.
It is not up to them to bring you back from your trauma, 100%, but in fact they are trying to bring you back with as much of your former-self as possible without causing further harm neurologically as possible.

It is a daunting task in many cases.  It may not be your fault for the position you now find yourself in, but it is also not theirs and one should hold the doctors up in high esteem, as it quite often is a thankless job that they do.

Having stated the above, one must ask then who has the answer to "What is the definition of brain injury?"

The answer is simple, ME.

I AM THE EXPERT!

And so are the millions of others who are likewise brain injured.

If you have not walked a mile in my shoes, then how dare you offer your expertise as being the ultimate, bar none, remedy to our plight of the brain injured?

I do not care if you have degrees, have spent hundreds of thousands of dollars educating yourself on TBI or ABI, unless you too are brain injured, you will fall short each and every time when it comes to understanding brain injury and how one reacts individually to that injury.

If someone asked me what I think of the plight of indigenous peoples or that of the African Americans with regards to race discrimination, I could not give them an honest answer unless like them the discrimination was equally thrust upon me.  Until then, I would ask them for the answer because unfortunately, they by experience, are the experts.

There is no definition as each is unique to that individual based upon where the injury occurred, what parts of the brain were damaged and also how that individual was brought up.
What do you mean, "How they were brought up?"

Each culture has certain aspects that differ from other cultures and that comes into play with the brain injured.

I responded to the passing of my parents as a celebration of life whereas in Italy, quite often with the older generation, the wife, adorns black for the rest of her life out of respect to he lost spouse.

Is it wrong?  Who am I to judge?

Do not get pigeon holed into thinking that there is a one fit for all mentality when it comes to brain injury.

Do not expect your brain injured person to either exceed or even meet a specific time span to achieve recovery.

Each is individual and they may never fully recover.  I haven't and its 36 years this October 31 since my last aneurysm ruptured.
This is why a I join brain injury support groups online.

Here are two that I belong too.  They are closed and one must be invited to join however, you may find a lot of information with regards to your brain injury.
TBISurvivorSupport.MyFriendsWhoKnow/

Brain Injury

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