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.