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