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.