If you brain isn't broken READ THIS!

           I often tried to give a Day In The Life of living with a mild or moderate brain injury to no avail.
It is not that I think its important enough or wouldn't be a good read but it really does not place enough emphasis on the true nature of the beast.
What does it really mean to be brain injured?

          As a Medic, I am surrounded by incidents as they are referred to by industry.  Sounds innocuous enough?  You know, the things I refer to, that for one reason or another means, someone took a left instead of a right and got hurt.   My job as a medic is to administer first aid to said worker, make out a report, which includes what the injuries were, whether or not the individual was wearing their Personal  Protective Equipment at the time I came upon him or her. Finally, I state the disposition of the case which usually means I hand the individual off to other medical practitioners such as Paramedics or doctors. Case Closed.

Its a sterilized view of something that went totally wrong in a split second that not only affects the individual himself but countless others including, coworkers, family members, rescuers, and a long list of employers, investigators and a list that would dwarf most well written novels.

You see, an accident or incident is in fact the cause of many things coming together at once that individually might not cause the injury but combined it becomes the perfect storm.
A recent situation in an oil rig site shows how the perfect storm occurs.
There is a person trained to monitor air quality at the rig site.   He has air monitors situated at various locations to detect the presence of oxygen levels, H2S (Hydrogen Sulfide) levels, CO levels and finally LELs (Lowest Explosive Levels).
The monitor on the day in question saw the LELs monitor sounding off every couple of seconds.  This was frustrating for all involved because they all knew there was high levels of explosive gases at the tank farm.  This was due to a broken lid atop of one of the tanks they were using to store a highly flammable substance known as Condensate.
The air quality person, turned off the monitor at the tanks because all knew about the situation and knew to take precautions and not smoke or weld in that area of concern.
The owners also knew about the culprit of the excess fumes coming from the broken hatch but continued to use the one of 26 tanks to store the Condensate.
Later that day they decided to remove the faulty tank and sent in 2 guys to open the bottom hatch and then clean out the tank.
The Air quality person was supposed to monitor the situation but felt that these guys were familiar with the situation and were experienced in what their job required, so he did not stay on site.
The two men grabbed their tools to open up the tank which requires using a hand held drill to unbolt the trap door.
They were not wearing their personal air monitors and had been supplied with an electric drill instead of an air driven gun.
The perfect storm.

The men opened the hood to their truck to attach the connections of the electric drill to the battery posts.  They kept the truck running while they went to the trap door and began unbolting the nuts.
Since the trap door was off above the minute the bolts were removed the gases inside flooded out the bolt holes and into the surrounding atmosphere.  With no monitors to warn about this explosive mix all it required was a source of ignition.  There were three in close proximity.  The running truck, the wires attached to the battery posts and the electric gun itself.
The spark from the gun caused a flash-over explosion that engulfed both the workers.

In a split second their world reached 1200 degrees causing burns to their unprotected skin which in this case was their entire face and neck.

In the eyes of industry, this was an incident.  In my world as a medic this was an incident.
In the world of the injured, this was a painful injury that took many months of healing to overcome.

The reason I bring this up is, the choice of bypassing one step in the process may not be significant but combine it and all hell breaks loose.  If the monitor was turned off but the two guys had used personal monitors they would have been warned and avoided the accident.  If the tank in question had been removed and not used to store Condensate on the same day it was being removed then the explosive levels might have not been so high.
Had they used an air driven drill instead of electric then this incident may not have occurred.

So today you have a choice. Your are late for work, so you hop on your bike and realize you forgot your bike helmet, or worse you don't think it will happen to you or its just not cool  and off you go.  You ride your bike everyday and are aware and never had an issue.  A person hops into his car and his cell phone rings just as he's pulling out of the driveway and bolts backing out from between two cars and collides with you.
Like you, this person is a great driver, no tickets, just slept in, and you were in his blind spot and so was he until that fateful moment where your worlds collided and you awake with a brain injury.

Had you been wearing your helmet, the brain injury would have been a concussion but now its a brain bleed and they needed to perform a craniotomy where they remove your scull to relieve the pressure on your brain.

The prognosis is guarded but you are lucky and after a few weeks in hospital you are sent home to begin picking up the pieces of your life.

Welcome to the first day of mild to moderate brain injury for the rest of your life!

What does that mean?
Short Term Memory, 40 percent of what it used to be.
Considering that 99 percent of us mild to moderate survivors have this dilemma, chances are that, so will you. Small price to pay considering all you went through?  Think about that?  It could have been avoided by following one small step, wearing a helmet. I bet you won't leave home without it now?
Like any new rule it takes a few months of consciously thinking about doing it. It is like the new rule of wearing a seat belt.  At first it was a pain in the ass.  Now, when you hop in the car, you almost feel naked without one on.

Now I have never, I mean NEVER, met a person with just one issue missing when it comes to brain injury.  That is why I call this My Broken Brain.  It is a metaphor because it is not like a broken bone at all because it never ever heals.  So, tongue in cheek, I chose the title, My Broken Brain because that is how the uninjured envision a brain injury as, a broken bone heals in 6 weeks so must your brain.

So lets pretend that all you suffer from is memory loss.

Day 1
So you get up today with your new memory loss and you have a shower and you think to yourself as toweling yourself dry, I have to brush my teeth.  As you grab you underwear you place them in the hamper and grab a clean pair.  You get dressed and grab a coffee.  You grab that brand new helmet you should have been wearing prior to the incident and head to work.  You get part way down the road and realize you forgot your pack-sack with your brief case, so you turn around and go back for it.  Partway down the road again,  you think, oh I forgot to brush my teeth, so you think you will stop at the store for gum to freshen your breath.
You get to the store and see the pop and think that would go good with lunch and forgetting why you even stopped, you head off to work.
At work you remember you forgot the gum! DAMMIT!
After work you grab your pack-sack and think I will stop at the drugstore and pick up a second toothbrush and take it to the office ruling out the need to remember.
At the drugstore you see an awesome deal on Easter candy and thinking of your kids, you grab one for each kid and you also see shampoo of which you are running low on, so you grab it and leave.
Part way home the thought of the toothbrush hits you like a ton of bricks and you give yourself hell for being such an idiot for again forgetting it!

Day 2
You have your bath and muse that at least you wont run out of shampoo.  You dry off and think, before I get my underwear I will nip it in the bud and brush my teeth.  You look in the mirror and think, boy do I need a shave, and grab the shaving cream and you are off to the races.  Shaved and now dressed you grab your pack and place it by your helmet because you ain't forgetting that again.  You pour a coffee and suddenly the tooth brushing thought crosses your single injured mind.  You go down the hall back to the bathroom and success!  You brush your teeth.  Now you are running behind schedule.  You grab your trusty helmet and off you go.
Feeling light, the thought of what did I forget, hits you as hard as the car that knocked you into this world of having one short circuit and you turn around to retrieve your pack sack.

Day 3
You get up, do your regular routine and you luck out and remember to brush your teeth.  You go to the kitchen and yesterday's coffee is still sitting there reminding you how inept you really are.  Grabbing your helmet you hop on your bike and stop and think, what am I forgetting?  Ah, the pack sack!  You are having a great day.

Now think about this.  You are on day 3 of the rest of your life!  No big deal?  Have you ever been stressed out about leaving an element on the stove?  Have you ever studied for an exam and get caught on a question that you know the answer of but just cant conjure it up until right after you leave the classroom?

Those 3 days are exactly what we the brain injured face day in and day out in every aspect of our lives.  We are in a state of stress equal to that, of did I leave the element on or not, forever!

This brings about a change in confidence.

This brings about a change of behavior that usually is not the bubbly kind but the short fused pissed off at the world, that will be noticed by everyone.

Can we spell, you're fired?  Can we spell, I'm divorcing you? Can we spell, you're under arrest for assault?
Can we spell, AA?  Can we spell NA?

Now, in brain injuries, you rarely get away with just one bum hitch.

I have Anomic Aphasia, meaning I have a crappy time remembering names.

Yeah, so what?

If you are a sales person, a realtor then its a big thing.  You generate more sales by recalling their name and the names of their family and making them feel important.  You sell them a house and that could mean 2 or 3 more from them garnering hundreds of thousands of dollars in commissions.  Think of the referrals they may generate because you treated them like they were family.

Embarrassing when you can't recall the name immediately after its spoken.

Add to that concentration being non-existent and see how that bodes for higher education when taking notes means you forget what he is saying because you are trying to recall what he just said.

Then we add to the mix,sleep disorders, noise and light sensitivity along with losing half of your vocabulary or the ability to spell simple words like winter or tomato.

ARE YOU GETTING THE PICTURE?

The price for brain injury is truly out of reach to forget one step in any process.  Whether its wearing a hard hat, a bike helmet, avoiding contact sports like boxing,or driving without a seat belt.

It is a simple split second to choose to do or not to do.  It is a split second to be involved in a life altering, life long struggle recovering from brain injury.

It's ultimately your choice.  Will it be selfless or selfish?

If you choose not to, selfishly, you often force your loved ones to have to spend their life looking after you and deny your parents a retirement, a wife of security, your children of hope and opportunity.

Small price to pay to say yes to being a responsible person.

Aphasia. Intelligence or Expression?

Aphasia?

Not a question of intelligence but rather an assault on expression...

I'm the lucky one, if you think having your world turned upside down for over 40 years something to write home to mom about.

I say this, tongue in cheek, because surviving any brain trauma or stroke funny or the life long struggles of living permanently disabled as joyous then one is missing the point.

There are several forms of Aphasia of which I suffer from one.

They range from mild to devastating.

A broad definition is stated above, "an assault on expression".

It is an attack on communication and the ability to understand the written or spoken word or the ability to either write or speak the words required to form intelligible speech.

Many thought the person with the worse case had become an "imbecile" and in the good old days would be locked up in one of those asylums.

Today, we have a greater appreciation of the cause and effect and with the assistance of therapists can make the right diagnosis and treatment.

I am fortunate as I have a mild case of it.

The form I suffer from is called Anomic Aphasia.

It is the inability to find the correct noun when having a dialogue with someone.

Now, one may think a mild form is laughable and get over it, as there are people worse off than you.

Let me remind you that a disability regardless of severity is still a lifelong sentence from which there is no escape or time off for good behaviour.

I was at a restaurant in 1977, awaiting the test results for my affliction, my left temporal Arterio Veinous Malformation (AVM) and I ordered a burger.  I didn't want tomato on it.  When I ordered, I lost the noun, "Tomato", and said I don't want a round vegetable that grows in the garden, as her eyes crossed along with mine, she asked

"Pickle?"

"No" I replied.

"Lettuce?" She inquired.

"No." Said I

"Onion?" 

"No."

I was beginning to wonder how many round things are there on a darned burger?

Then she asked"Tomato?"

"That's it!" I declared

"That's what I don't want on my burger", I stated in relief and some embarrassment.  I could have easily removed it from the burger when the order arrived at my table.

It's 40 years later and still I lose my ability to communicate effectively.

I avoid conversations involving things, like movies because I can't remember the title of the flick or the actor/actress's name.

The same can be said for anything with a noun in it.

Names of life long friends, medical terms in my field of employment as a Medic, or terms used in anything you use in the house or place of work.  I can use something like tweezers but may lose the actual name when telling you about my treatment.  You know, the thing used to pull out slivers.

STOP WHINING!  At least you can function, my loved one can't even speak!

I have stated in the past that mild and moderate should be struck from the medical vocabulary because it is so unfair to those who suffer from a mild or moderate form of disability.  We're still disabled!

What is worse?

A person who you know by virtue of their inability to speak a simple sentence,or one who can but shows a lack of finesse fitting to their level of expertise?

I have been passed over for promotion, been thought of as incompetent or stupid because I cannot speak effectively.  Some think it's a matter of intelligence or the lack thereof.

People get frustrated or simply talk over me because I get stuck on finding the right word.

It is demoralizing, causes depression and a high level of anxiety.

I may be high functioning but the frustration that comes from an inability to communicate is to say the least painful.

We are a social animal and besides touch, speech is tantamount to being included.  

If we cannot communicate, we withdraw from society and that is akin to a self imposed life sentence in solitary confinement.

Yes, any disability is in fact severe in nature.  We have more compassion for those whose disabilities are glaringly obvious than those who struggle silently in their knowledge that they are not right in their own world.

We even feel guilt to ask for help or empathy because there are those whose affliction is worse than ours.

www.aphasia.org/aphasia-definitions/

Aphasia is and has been a part of me since 1977.  

I discovered my affliction the usual way.  I joined a brain injury group and read a post and thought he was talking about me.

I then looked it up and realized the reason for 40 years of living with this issue.  It all makes sense, too bad the neuropsychological test in

1978 wasn't explained to me or that rehabilitation was not suggested.

It may have made a big difference in my recovery.

The least it would have done is let me know I'm not incompetent and there is a reason for my speech and expression of it, after all.

Frustration?

For those without Aphasia, imagine this scenario,

If you have ever been in an exam at school where you are secure in the knowledge of the material being tested on and you come to an question you are certain you know the answer to but know matter how hard you try to recall it you just can't find it.

You leave the class and suddenly the answer reveals itself.

Now that is your level of frustration.

Take that level of frustration and apply it to every time you wake, every time you speak and even when you think and then you start to appreciate the depth and width a person with aphasia  faces for the rest of their life. 

Blame

Regardless of fault, your loved one has a mountain to climb.

Brain injury is one of the most difficult injury to recover from.

Blame after the fact has no bearing on recovery except to retard it.

Blame can be on so may levels.

I should not have drank and drove, I should not have taken that illicit drug, if only I had not gone to the bar and gotten into the fight,

If I had only worn my helmet, and the list goes on.

In some cases like myself, my mom blamed herself for having me against doctor's wishes as all her pregnancies were risky.

By harbouring resentment will only manifest in a negative outcome.

It is like a disease that spreads to healthy members which only causes at the least an anger and break down of the family unit.

One need not bury the feelings but one must learn to work through them and to deal with them early on through therapy.

A parent who has an adult child is forced back into caregiver for example can be overwhelming.

A parent of a child struck down before they had a chance to blossom.

Yes blame is a powerful enemy.

However blame turned into a positive can be a strong asset.  It can become motivation and determination to overcome.

Is the glass half empty or half full.

The more positive the input the greater the recovery the healthier the family unit becomes.

Never deny your feelings.  

Air them and move forward.

Although this picture is about cancer it easily works for everyone.

Another link to explore

This link designed for autism shows hope for other learning disabilities.
Since Autism is a brain disorder I feel it may help with ataxia or aphasia.
Please let me know if it works so I may share with others.
https://www.gemiini.org

How does one recover?

How does one recover?

In my last blog I asked but didn't fully answer the question that the title of this blog asks.

It's been 40 years of recovery since aneurysms changed my life forever.

At 14 they started leaking and at 18, they ruptured and required 7.5 hours of surgery to remove the AVM

(ArterioVenous Malformation) over my temporal region of my brain.

In those 40 plus years, I have found that unfortunately, for the majority, help is few and far between.

If you are rich and can afford therapists, neuropsychologists, neurologists and surgeons then the world is your oyster.

If you are not, then there is immediate help.

If you are severely compromised, then rehab will continue for as long as there is medical coverage or insurance.

If you are high functioning then the walls come tumbling down.

Welcome to Humpty Dumpty and all the Kings horses.

You are not only in a fairy tale but a nightmare where you may never awake from.

You need support.  Both you and your caregiver.

You need legal advice before you sign off from any insurance claim.

You need advocacy to guide you through this frightening place from which you find yourself in.

You need respite as a caregiver so that you don't burn out.

In all my years, I have learned more from one place than from any book, any therapist any neuropsychologist I have seen.

In fact I have probably taught them more than they are willing to admit.

The best answers and best insights I gleaned into understanding myself came from brain injury support groups.  

I learned so much from my local group I became President.

Online groups also are very therapeutic.

We know what you are about to go through and may suggest a therapy or a resource that helps.

Most rewarding is the acceptance and friendships that develop.  

You too may find, quite by accident, that you inspire or help with your knowledge.

So, my first, my only true recommendation is through those who have walked the walk and speak your language, the language of the brain injured and that of the caregiver.  

Join one today.

Here's one I recommend.

TBI Survivor Support/My Friends Who Know

Search for this private group in Facebook

You won't regret it.

Brain Injury Forever

Not all wounds are visible.

One could also say "Not all disabilities are visible."

Brain injury is like no other.

Brain injury is like no other brain injury.

Brain injury is like everyone.

It is unique and unto its own.

The treatment therefore needs to be tailor made.

Brain injury recovery may measure in years and not in weeks, or months.

Recovery may be a lifelong struggle.

How does one recover?

I have mentioned in previous blogs the difference between loss of limb, sight, hearing or mobility to that of brain injury.  

The glaring difference is when you have cognition, you can adjust to the physical limitations from other forms of disability.

When cognition and conversely when memory loss occurs the struggle back becomes more than learning to accept your new physical limitations.

More severe cases of brain injury include loss of mobility, loss of communication and even loss of comprehension of the spoken word.

At first glance a person with a shaved head, question mark scars, swollen eyes indicate the trauma.

After six weeks the hair is now 1/2 inch long and within six months the hair needs it first trim.

On the outside, we look uninjured.  We may present with a vocabulary sufficient enough for you to think we are fit for duty.

Inside we still have a broken brain.

We forget.

Yes, so do you.

We forget on a scale that would scare you.

We do not know when normal forgetting ends and disability begins.

We forget every single second of every day.  You may not notice it because we never make it known.

I have mentioned in the past that I have misplaced 8 wallets.

I fail 99 percent of the time to shut off the stove element.

You may not notice it, but I do.  Each day after preparing my lunch I sit down and begin consuming and a checklist starts running in my mind.  When I get to the question, "Did I turn off the stove?", my answer is "No".  I then arise to confirm my suspicions and then 9 out of 10 time turn it off.

It is the small things.  The keys to the car and going back in to get them.

The appointment, my phone, my smokes, my jacket and the list goes on.

I went to buy a toothbrush because I left mine in the camp where I was assigned.  I got to the store and bought Easter eggs for my grandsons and a loaf of bread and returned home without the brush.

Try doing this for 40 years and counting and try to acknowledge how trivial this is.

We all forget?  

You don't even register on our scale of forgetting.

Often we are accused of using our forgetting as an excuse to get out of work.

Really?

I want to be thought of as

A) Lazy?

B) incompetent?

C) unreliable?

D) stupid?

E) malingerer?

Now that's a great resume to be proud of.  It's my mission in life to forget names including my wife's, my grandchildren's, my friend's and the list goes on.

Now couple that simple function of forgetting and add anger and frustration brought on by memory loss.

But don't end there, let's add obsessing to the recipe and follow that up with a dash of Aphasia, an inability to find words, and now you begin to see how complex this disability is.

PTSD ensues this and of course there is the possible paralysis, vision impairment or speech issue before one begins to appreciate the full scope of brain injury.

Now, friends disappear, relatives give up and still the brain injured with a rewired brain are left to cope by themselves.

Please understand that we are not faking it.  

We have no control on when we remember one minute and not the other.  

A brain injury is forever.

It is never one simple issue but rather multiple complex issues affecting many functions of the brain.

Please stand by, regardless of our failures, our anger outbursts, our slow recovery rate. 

We need all the support you can give us.

All In A Brain Injury by Debbie M. Wilson

All In a Brain Injury
We have memory problems.
We have concentration difficulties.
We have sensory deficits like blurred vision,
ringing in the ears or a bad taste in our mouths.
We can have loss of sensation and feeling.
We can have headaches.
Many of us have loss of balance.
We can have light sensitivity.
We can also have noise sensitivity.
We tend to have mood changes.
We tend to become depressed or anxious.
We may have chronic fatigue.
We may have sleep disorders.
We may be confused.
We may have speech and hearing deficits.
We may lose judgement and reasoning abilities.
We may stay angry a very long time.
We are usually not sure who or what we are angry about.
The truth is we do not know ourselves anymore!
We are usually the last to know or realize the extent of our injuries.
Many of us also have PTSD.
Others of us have seizures.
Please, if you see our symptoms, help get us the help we need.
We need support, encouragement and hope.
We need faith that we can overcome our many deficits.
We need immense understanding as we lost "ourselves."
It is difficult to again find our way.
Our futures are full of unknowns and extremely hard work.
We are like a brand new person, starting all over again.
None of us wanted to start all over again.
We may be resistant and we may deny, deny and deny.
We need nurturing and we need guidance to again find our way.
We are unique in every way.
What the brain is able to again do
will astound even those that do not believe in miracles.
We are survivors in a special league.
Many of us had experienced loss of family and loved ones prior to brain injury.
These loses were heart breaking and hard to accept.
They did not prepare us for the total and complete loss we have felt as a result of our "loss of self!"
We are brothers and sisters
as a result of the uniqueness of our loss.
We believe we are the only ones
that can truly understand the magnitude of our loss.
Together we are stronger,
and we learn tips that help us move forward.
Please be kind and patient with us.
If you have not experienced loss of self it is very hard to comprehend.
Please just sympathize and empathize with all our loss.
We are a group that has a tendency to far surpass anyone's expectations or dreams.
We are the "ultimate survivors" in every sense of our existence!
We were chosen and are all an honor and a blessing to know!
Debbie M. Wilson

Its alright to simply to give up on life.

Many survivors chase after an unattainable dream.  Often is the lament that one will persevere and overcome.  This is an honourable task however is it reality?
After 40 years of bombastic stubbornness I finally came to the conclusion that this is the most detrimental approach to finding both a cure and peace of mind to what ails you.  It would is better to surrender yourself to the permanency of your brain injury.

I am not saying you should quit life or quit trying but rather take stock of this new normal and both embrace your disabilities and celebrate your abilities.
You can't fix what you don't take ownership of.
They say insanity is repeating the same task expecting a different outcome.

Accepting your short term memory as the new normal, allows you to incorporate new tools and to increase your memory potential.
If you can't remember appointments, employ your therapist, doctor or dentist to phone you in advance of said appointment.  Now you need not remember.
Tire easily?  Ensure a flexible schedule that incorporates power naps so that you can remain at the top of your game.
We fail our way to the top and no one gets there alone.
We network and have others with greater skills help us to succeed.  This is true of injured or uninjured alike.
Stop chasing after what you used to be.  Some of your disabilities may be permanent and trying to fix the unfixable is truly the definition of insanity.
Celebrate your abilities and support your disabilities with all those around you and watch as they jump in to make your journey back as rewarding as ever!
The hero inside of you needs to know it's alright to ask for help and in fact is the bravest act of all.

Grief

I have not visited this process in my blogs but this one will play a role often in your life both as a caregiver and a survivor.

Most often this is reserved for people who have died and therefore we tend not to think that this will play a role but with any disability that one is not born with the chances that you will become victim of its stages are likely.

Let us look at it for what it is.  If you lose an ability, such as mobility, or the loss of a body part one has a death of that function(s).
In brain injury you may well lose the ability to talk, remember, sleep, move one side of your body (paralysis) and as I have said quite often we lose "Self", the person we came to know and love all these years.

The spouse or caregiver loses the person he or she loved and depended upon to keep up their side of the responsibilities within the realms of the marriage.  Most often the husband is injured and no longer supports the family and that is a huge blow to the entire family and places even greater stress on the already overburdened wife.

The children will also suffer from loss of their security as they once knew it and so are subject to some form of grief.

Expect it.

Shock

This is the first stage.  How or why did this happen to us or me? Confusion and a sense of being out of control as well as not fully understanding what this will all means to you or your family.

At this stage it is important that you do not make any financial or legal decisions and get legal advice from someone who fully understands brain injury.

Anger

This will come in many forms.  From the caregiver being mad at who caused this dilemma if there is someone to blame, Anger at the children or spouse or a mix of this going back and forth between all members of the family.  You may feel your world is out of control and that you are going insane.
Now is the time if you have not already sought out help through your doctor, a therapist who can allow everyone to vent in a positive manner and come together as a family to help the injured loved one.

Bargaining

This can be done to your God or with yourself begging for a return to one's former self in hopes that this is not permanent.  this may lead to depression or suicidal tendencies and professional help may be a need.  Add to this the many drugs that may be administered and those thoughts may be forefront and constant monitoring by physicians may be required.  Have your Doctor's or therapist or local help line phone number on your cell phone at all times.

Acceptance

This will eventually come but there is no timeline and in fact you may bounce back and forth between the above mentioned processes.  I often ask why me?   I really haven't know an adult version of me uninjured but still I wonder how my life would have been without the AVM.

So be aware of these processes.  It will eventually get easier but nothing will replace the potential of what we once were regardless of who is to blame.

If you measure your recovery from the day of rather than the day before the accident, then the progress will be greater than comparing it to someone who had no deficits.
It is incumbent on you to take what you have now and do the best that you can with the cards dealt than to continue chasing after a hand already played.

What have you got to lose?

I have been living with this broken brain for about 80 percent of my life so far.  I was born with an AVM(ArterioVenous Malformation) since birth in July 1959.  It raised its ugly head, no pun intended, about 4 years before my actual brain surgery at age 18 in 1977.  My concentration all but vanished and my memory, short term, was wiped out and has never recovered.
So how am I writing this?
My long term memory is fully intact and I recall things that happened back to my early youth of age 5-6 years of age.
I am very fortunate that I can hold down a job and as long as it is repetitive in nature rarely forget a process.   Now my learning curve is longer but eventually I master the computer, the piece of equipment or the task at hand and have no issues.
I am truly blessed to be high functioning brain injured.
The things I write in this blog are shared experiences of both myself, my wife and those around me who have little or no voice, the more seriously brain injured whose mobility, speech, memory, cognition are greatly affected.
I stumbled through this world with no formal rehabilitation and after 15 years of recovery joined the Comox Valley Head Injury Society in hopes I could help others facing similar issues as I had.
Little did I know that this chance encounter, would forever change my life.  As I smuggly went to the group, I soon saw in others, things I knew to be true about myself and had not considered it to be in direct relationship to a broken brain.
My memory was the fact of pot smoking.
My anger just a bad trait and not due to cognition, frustration from memory lapses and the like.
I had so many comparisons that I sought out Anger Management courses, found counselors who understood brain injury and most importantly knew how to communicate with a brain injured as not to upset of cast blame on him but rather at the TBI or ABI.
The merging of me with a group of similar wounded warriors was as therapeutic to me as I was to the ones who were just starting their journey.
We understood without ever having to apologize for losing track of our conversation.
We could laugh at how names elude us.
It is a sanctuary where you can be yourself without explanation or apology.
It is a place where the caregiver can find relief.
A place to vent their frustration and heartbreak.
It is above all a place that celebrates hope.
If you are too proud because you are not as badly off as someone else, think again.  You can learn about yourself in others.  You may see that though someone else is worse off traits that they display are the very issues you deal within your own life, just slightly watered down.
What have you got to lose from joining?
What have you got to contribute?
What have you got to gain to shorten your journey?
Find a group online or locally and make a difference.
It may just save your life or someone else's like it did for me.

Helpful Hints

Here are some facts you might encounter after a brain injury.  Some symptoms will be lasting, some less severe and unfortunately some may be progressive and increase in severity as time goes on.

I noticed almost instantly after brain surgery that I required more sleep.  I found that by mid afternoon I needed a nap.  I was 18 so one could not place this need at the feet of old age.  I am 55 right now and still find the need to have a power nap to recharge my batteries.  I find a 20 minute snooze is all that is required.
I do not recommend going past 30 minutes because the powers of our sleep cycle may be at jeopardy.  Going into deep sleep mode may cause you to be less functional when you awake.


Your cognition is what will be affected and this could lead to more frustration or anger outbursts so allow yourself to power down because fatigue is dangerous to both the injured and uninjured.  How many times have we heard of someone asleep at the wheel and either killing themselve or someone else.


Many brain injured will attest to getting overwhelmed by noise, crowds or other social functions like sports, shopping and the like.   Plan for this and have an exit plan.   Start by having a nap before seeing the grandkids or attending a party.  Plan in advance the need to exit gracefully by informing the friend or relative that this is the new norm and most will be accepting.  They may even take the children outside while the brain injured gets some needed downtime.

Realize that our brains do not process as quickly and we are not being rude if we make a hasty retreat.  I know that often is the case that a thought comes and I may interrupt for fear of losing that memory.  Some may say I am rude but it is a fear mechanism and I have less coping skills than I had.
This is why I often avoid conversations.  I either interject, inappropriately, or avoid speaking. 


Some memories get misplaced.  I called my 2nd wife of 24 years by my 1st wife's name for quite some time.  Good thing she understood and did not take it personally.

Patience is a measure that caregivers and friends need to have a lot of during the early days of healing.
I may obsess, I may need a rigid regime as I retrain my brain.  The part of the brain being retrained may be a secondary location to the primary site responsible for whatever function I am trying to fix.  I may never be 100 percent.  I may be slower in recalling.  I may need help to recall.  Names still avoid me and I have to give hints to synonyms for the word or name I am seeking.
Some days I say to my wife, Edie, our grand daughter, what is her younger brother's name?
The wife replies Preston.  I then inform the wife that Preston's picture was posted to Facebook by our daughter.

Now this is 40 years post injury and this is my life and has been since 1974.

Do not do the thinking for me unless I ask.

Make helpful suggestions for me and allow me to screw it up several time until I find a solution to my issue.
I need support, patience and encouragement rather than having you step in the way and do it for me.   Always evaluate my anger outburst after I calm down and suggest a way to alleviate that obstacle.  I also need to be receptive to that assistance.

Find a therapist who understands and can communicate to the survivor in a way that it does not look like he/she is casting blame or fault at the feet of the survivor.

Lets us be realistic, I would not act that way before my TBI, therefore the reason should be abundant that it was and is the fault of my TBI and not out of ignorance.

Friends and loved one I implore you to realize that this new norm may last a lifetime.  We all hope it does not but in 99 percent of the cases, this will be the reality.  Your goal and that of the brain injured is to acknowledge this fact and find a comfortable solution that mitigates or reduces the overall affects that the TBI has on us all.

Rehab DIY

I may get a little flustered at times.  I may come off as inconsiderate.  I may sound angry.
One could point to what else, my brain injury?
Ha!
When it suits you, I have a brain injury and not just an opinion.
If I suggest my behavior is in  direct relationship to the loss of brain wiring, you are doubtful.
Your expertise is that you have lived as long as I without a TBI, therefore you can state inequitably that my short term memory loss is not that bad.
My inability to hold a conversion or get a joke is nothing more than an inconvenience that I should get over it.
My lack of compassion for the passing of a loved one means I am a psychopath.
When I cry at another person crying, I am over sensitive.
When I forget a name, I am rude.
When I forget an appointment, I am irresponsible.
When I apply for a Job that requires an aptitude test that is timed, do I state I have a learning problem.  Do I lie and say I am dyslexic?  Do I say I have a permanent disability?
Will I get hired if I do?
Yeah, I have a right to be angry.  I am high functioning disabled however the key word here is disabled and that is my dilemma that has haunted me for 40 years.
Help?  I had none in 1977.
None in any years since even with 2 neuropsych tests in 78 and 1994.
Its ironic that the tester of the neuropsych test knew I was disabled but could not refer me to someone who might help.
My rehab was simple. DIY.

Ignorance! Alive and Well in 2014

As a member of a couple of brain injury groups on the internet, I find the all too prevalent misunderstanding surrounding TBI/ABI, still persists.  I recently read a story of a woman forced to move back with her senior citizen mother who, by grace of her age, doesn't grasp the depth to her daughter's brain injury.
Now this I can fully appreciate, and would not expect a senior citizen to fully understand brain injury especially when in her days, "One flew over the Cuckoo's nest" mentality and Lobotomy were the only recourse to mental abnormalities; But come on, this is the 21st century, isn't it?
Her struggle isn't so much with her mom but with those who by grace of their position should know better; Her church, pastor, and congregation.
This ignorance towards the most vulnerable of our society, the brain injured needs a voice and the church and the medical community need to put their mouths where their experience should be.
I am not surprised, however, there is no excuse for those in positions to help educate society with regards to the struggles of brain injury.
I was given a golden handshake in 1977 when it came to brain injury.  My neuropsych test stated I was disabled.  I scored in the 7 percentile of the population had my memory ability. In other words I went from 4 point 0 down to an E average.
I have, over the past 40 years, adjusted for my short term deficit, but the score remains the same.
Our struggle is made more difficult with statements of, "We all forget, so get on with it" or "You're not that disabled." Or"At least you can walk."
Yes, I have heard all of this.  I cannot emphasize how crushing this is to a brain injured whose struggle back may be a life long journey.  Brain injury is an assault on self.  Brain injury is an assault on the family.  Brain injury is an assault on friendships.
Your help and understanding can and will make our journey back easier.  Please take the time to become informed.  You will not find it in a book but rather from a brain injury support group online so join, immerse and have a change of mind.

Another Great Link

Interviews with Survivors

Perspectives

When did you learn about gravity?
If like me you would state in school.
In fact you didn't.
You learned it when you first tried to roll over or tried to crawl or walk and fell over.
If I asked you to climb atop of your 2 story house and jump off, chances are you would respond, "You first!."
The reason is you need no scientific proof of velocity and the sudden stop at the end to convince you, "This is gonna hurt!"

If we go out fishing and catch a fish, remove the hook and release the fish back into the water, one could assume that the fish saw its world from a different point of view.  It also saw its limitations and how it was bound to its watery confines.

Welcome to the world of the brain injured.  
 If you are a caregiver for the first time.
If you are a survivor for the first time.
Each of you are like that fish.  Your perspective has been changed.  The world for your friends carries on but yours will never be the same.
The point of view of friends and family may not coincide with yours.  They are not wrong, they just haven't been pulled out of their world and viewed it through your eyes.  Chances are they will never get it.  Why should they?  They too, have a comfort zone, have time constraints, and all the daily constraints  that differs from both of you.
They are not wrong if they leave you behind.
In essence both you, caregiver and survivor have taken a different path too.
Yes, you may miss the friendship or be angry for their lack of compassion but there are truths about brain injury you need to appreciate like the truth about gravity that will need to be accepted if  you desire a less traumatic path to acceptance.
Truth
Friends will abandon you.  Regardless of brain injury, friends will come and go.
Family may abandon you.
Its hard to get around the word permanent, the word disability and forever.  Put them into one sentence, "Your loved one has suffered a brain injury and will be permanently disabled and the affects are most likely forever.
Truth
You are and will yearn for who you once were.
You will gauge your progress on who you once was clinging to any inkling that he is resembling his/herself.
DON'T!!!!!!!!
The more you chase the past, the more anxious and frustrated you will become.
Gauge the process from the date of the injury and move forward from there celebrating any  new progress made!
TRUTH
You are like a new child, a new employee on this path for the first time.  Do you berate a child for failing in his/her first dozen attempts or give them encouragement?
So, caregivers, you need patience and be positive.
Brain injured?  Give yourself some latitude to screw up.  Like gravity, you will stumble and fall
TRUTH
YOU WILL NOT REGAIN ALL FUNCTIONALITY!
You will master your new world minimizing the affects of having a broken  brain and have a new perspective that those who failed to follow you in the progress of healing, are most likely doomed to return to the bonds of earth and repeat the lesson of compassion.

It Just Happened! What do I do?

This is the time to act.  You see insurance companies act post haste, to minimize the cost of damages.  So should you.
Regardless of whether this is a TBI or an ABI.  Whether insurance is availble or not, you do not have time to begin either the healing process or the legal process.

If you have either insurance or injury occurred at work, if a representative offers you a settlement, politely say, I must speak with my attorney first. (Of course "I" being the spouse or caregiver)
Lawyers better be well versed in Brain Injury.  This will be a long process.
Long term?  Possibly for the rest of his/her life where the file needs to remain open.
We may hope for a complete recovery, but we need temperance, and plan for something in between.
Things to consider long term.  Income loss, siezures, scar tissue building up on the brain over the years.
Yes, you may be fortunate like me, no scar tissue build up, yet.  No siezures but one can never rule them out.
Get a goooooood lawyer who ensures you file is ongoing.

Now if you have no coverage, had a stroke or tumor then you need to turn to help groups immediately.  They can direct you to government or charities that may offer assistance, like walkers, wheel chairs, wheel chair ramps, medical beds, hoists to aid in moving the most serious.
You will also need to know what rehabilitation is for your loved one.
The proper neuropsychology testing.
The newest treatments like Hyperbaric Oxygen Therapy (hbot).
The quicker the rehab and legal process begins the better the outcome for both you, your marriage, and or family.

Hope you never need me but I am glad to be of some help if you do.

Another Great Link

http://survivingtraumaticbraininjury.wordpress.com
Surviving Trumatic Brain Injury

A Question Of Faith

In my last blog, I mentioned faith or spiritualism as a means for healing.  Now many require no convincing of the power of meditation or divine intervention.
Some athiests may scoff at the idea that a mystical being has anything to do with the healing process and it's all in your mind.
I agree with both!
Those who have a faith whether they believe it or not are using an icon, to really still the mind to access the subconscios mind which I feel is connected to a greater power I refer to as the "Collective Consciousness" that some refer to as God.
Whether you believe or do not believe is neither up to me or anyone else however, if you are worldly, meaning tolerant and respectful of all beliefs or non-beliefs then I pose a simple question.
What harm is it in believing in spiritualism as part of the healing regimine?
Let me put it to you this way.  If we believe that Global Warming is true but the nay sayers hijack the argument and say it is not so and we destroy this planet then we all lose.  If we support the argument that global warming is real and are proactive in cleaning the environment, what do we lose?
Nothing.  In fact we gain a cleaner environment.

So if you allow for prayer in any form, whether from a specific faith or from someone who has faith in a healing rock, a pool of water, or an annointed person, and when you die there is no afterlife, what have you lost?  Conversely if you deny the possibility of life after and there truely is then you may have denied yourself the option to healing yourself or a loved one by way of prayer.

You merely have to still the mind at night and simply ask the power to be to please bring balance, harmony, health, success and love to the named injured person.
Positive reaffirmation.
What have you got to lose?
To me it's a win,win kind of situation similar to those who would rather destroy the environment instead of leaving it cleaner than it was when you got it.

The Spirit Within

I may not be the best person to speak about spiritualism for obvious reasons, like I don't follow a religion, have not read the bible, have for the most part of my life been an agnostic, yet I am going to share my story and hopefully you won't be offended or think that I am a lost cause.
It has taken me 40 years to come to the conclusion that in fact the power of prayer may work.  I say may for those who are like me a little cautious.  You see I was mad at my God, for giving me this terrible challenge.  I could understand it if in fact I was the cause of the aneurysms but they were formed before I was born.
Now the reason for writing this is to help those who are more faithful than I and maybe open the minds of those still wondering.

As I told you, this all began at 14 when aneurysms began to rupture.  In actual fact without going into great detail I ask you to simply follow my thought patterns and determine whether it was luck of the draw or a greater force was involved starting before even I was born?
A simple thought for the non believers is simply this....We have two minds.  The Conscious mind.  This is what governs our conscious decisions.  To walk, run, laugh, cry, wear a helmet or not, get behind the wheel, call a cab.  Everything we do, right or wrong is governed by our conscious mind.
The second mind is the subconscious mind.  This works 24/7, regulating your heart, managing your temperature, blood pressure, growing your hair and finger nails.  It fights infection and it does what no doctor or psychologist can do and that is to heal you.  Yes, a doctor may set the broken leg, which removes  the block so that your body can begin the process of healing.   The same with the psychologist.  He guides you from the darkness so that your mind can begin to heal itself.  All healers, whether Christ, Mohamed, Buddha and dentists, physiotherapists, chiropractors and the like are facilitators for the process of your subconscious mind to promote its own healing whether it is physical, mental or spiritual.
Now I am of the mind that the planet is much older than 6000 years, that the big gang occurred but the question still remains, who created the big bang?
Along comes a scientist and The "Theory Of Everything", by Robert Lanza, http://www.robertlanzabiocentrism.com/ who merges the realm of science and Biology which allows for both science and spiritualism to exist.
Now I am not going to go further in explaining the theory of relativity, the big bang, the reason for us being here but in that same thought I will explain how I think that possibly the hand of God played a role in my life.

Dr. Heffernan told my mom not to give birth to me until July 21, 1959 as he was on vacation until then.  I decided that I like the number 19 and at 6 am, on the 19th, I was born.
Dr. Sinclair was the attending doctor and as fate would have it, I chose to see him over Dr. Heffernan in the years that followed.
I began passing out in or around age 13-14.  Dr. Sinclair prescribed something for poor iron blood.  It had little or no affect as the passing out continued.  Wishing to avoid the cod liver mixture I simply stopped complaining about my passing out frequencies.
My grades began to plummet along with my concentration and my scholastic abilities were a swiss cheese of some grade 9, 10, 11 by the time I finally dropped out.
My dad decided to send me 500 mile north to Vanderhoof, B.C. hoping that working for our farmer friend would convince me to go back to school and get a good education.
Late July, I became nauseous from what I would later learn was an aneurysm rupturing.  No pain, just disorientation.  Still concerned I went to the doctor and he stated it was my spleen.
I though it was my head but who was I to question the doctor?
A week later I have the car accident and get a free trip with my broken leg back to Victoria.
I go to the emergency, see Dr. Mackie who is in the process of taking over doctor Sinclair's practice.
He discovers my broken arm missed by the hospital in Vanderhoof.
October 31, I have the major aneurysm rupture.
Dr. Mackie refers me to Doctor Cameron who saves my life.

Lets sum it up.  For some unknown reason, I get Doctor Sinclair as my doctor before I am born and he is to retire and Dr. Mackie is to take over his practice on or around 1977.  The Doctor in Vanderhoof 's misdiagnosis of my rupturing aneurysm.  To get to Victoria something grand has to take place.  Let's see, God throws a pick-up into my path and I break my leg.  They miss my broken arm, another miracle, because Dr. Mackie remembers that and decides I need a brain scan, an X-Ray and an EEG.
The tests prove I have 6 weeks to live.  To me, too many coincidences along with the timing leave me wondering.
I could not deny the many faiths that prayed for me to say that the power of prayer did not have an impact upon my recovery.  I could tell you that these farming friends used to reside in Sidney which was outside of Victoria and moved to Vanderhoof in 1974.
The fact remains whether it is fluke luck or divine intervention, I personally lean towards the latter.  I believe our bodies are not perfect but the soul within is.  I believe we are divinely perfect and that our connection to heaven or the divine consciousness is through our subconscious mind.  If you still your mind and feed your subconscious mind with healing positive thoughts you will consciously see the healing manifest itself in you.
I may not know what is in store for me.  It may be this blog.  It may be to give you hope,  It may be to say a loved one is too broken and it is in God's hands, or may be a loved one passed already and you need to know all was done by you for him or her.  Whatever the reason I hope this blog continues to help you in your healing or acceptance of the loss of self one has or is still facing.