BRAIN INJURY JOURNEY BULLETIN: GRIEF and LOSS

GRIEF and LOSS: Recognize-Change-Transform

 

July 2017

Edited by Lee E. Horton, LCAS/CCS

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Introduction

How important is the grief process?  You have survived a trauma – a brain injury, a death, some type of loss that has drastically altered life for you and everyone around you.  Everything changes.  What can be done when . . .

  • life seems to stop in its tracks – not moving forward at all?
  • you are taking two steps forward, but three steps backwards?
  • it seems as though any goal is too hard?
  • feelings get in the way of daily living?
  • negative self-talk is all you hear?

When trauma happens, grief and loss burst out to blanket you and everyone you know.  Two options are available to all exposed to trauma:

  • stay stuck in grief and loss, or
  • work on healing.

Healing occurs during a journey of recovery for survivors and caregivers.

Change can be frightening and difficult to do and when it seems that you cannot take that step on your own, ask for help. Opportunities for change will occur. Oddly, they often are not what we were asking for and thinking would come our way. But look for the opening or the break, take the chance, and watch yourself change.”  Excerpted from Reinventing Oneself after Loss, Hilary Zayed

Holistic (physical, emotional, psychological) healing and recovery involves steady improvement and gains, often with plateaus of little to no visible improvement.

“Life changes, often unpredictably. The recovery process is a spiral of getting better and getting worse and then after the trauma of recovery, an expectation that you are “fixed” and can move on. You are expected to believe the universe lies before your unfamiliar new feet. With strategies in hand, a game plan in mind and friends and family for support, you set off into the unknown. However, you soon learn you need to recalculate.  Going this way . . . recalculating!  Going the other way . . . recalculating!  Road block . . . go another way!”   Excerpted from Reinventing Oneself after Loss, Hilary Zayed

Remember: it’s a process.

Reinvention of self after one’s identity is compromised is a long process . . .will my reinvention ever feel complete? Will the feeling of moving completely past loss ever happen? I will have to wait and see.”   Excerpted from Reinventing Oneself after Loss, Hilary Zayed

Is it different when the trauma is a death?  Everyone left goes through grief, relief, anger, denial, and other feelings that are part of grieving.  Yet, even in the middle of this, healing occurs for many.

“The death of a loved one is devastating.  In fact, it is one of the hardest things for us to go through.  Each of us will experience this at some point in life.  It could be our parents, grandparents, a sibling, or perhaps a dear friend.  It makes no difference as to the relationship we have with them (blood versus non-blood); it is the emotional connection that defines our heartache.”  Excerpted from “The Most Important Step to Healing a Broken Heart” by Janelle Breese Biagioni

“All I can do is share with you what I and others did to heal our broken hearts.  It was the most important step that each of us took and we did it in our own way and in our own time.  We did what our hearts ultimately needed and the grief journey forced us to do.  We DID THE WORK!”  Excerpted from “The Most Important Step to Healing a Broken Heart” by Janelle Breese Biagioni

Defining a MODEL for GRIEF

“Losses are often similar in nature and dramatically different in substance.  So, when life radically changes, a personal, deeply unique journey of healing begins.”  Excerpted from Reinventing Oneself after Loss, Hilary Zayed

A majority of professionals, survivors, and caregivers identify a GRIEF MODEL (Excerpt of GRIEF MODEL from http://www.recover-from-grief.com/7-stages-of-grief.html) as having four stages.  It is a cycle, at times highly intense, on other occasions less so.  Progress through the stages of grief and loss is not always one after the other, or linear.  A person can be in several stages all at the same time.  He can go back and forth between stages, or she can repeat a stage several times.  Because grieving a loss is a process, it takes time, effort, and focus to work through.  The one thing a person can’t afford is to ignore or avoid grief and loss.

“We have tremendous resources and material today on loss.  Yet, we remain mourning-avoidant . . . we give people three (3) days bereavement leave – it is impossible to heal in that time.  Moreover, it is impossible in that time to travel across the globe to be with family and friends when there is a loss.”  Excerpted from “The Most Important Step to Healing a Broken Heart” by Janelle Breese Biagioni

RECOGNIZE

STAGE 1 — shock/denial

Shock/Denial

These are common, documented reactions to a loss sustained from a trauma (TBI, death, etc.), which include:

  • numbed disbelief – “Why did this have to happen to me (him/her)?
  • denying the reality of the loss at some level – “I’m going to be OK.  I only got hit on the head.  My skull is hard and I can handle this.
  • avoiding the pain (denial) – “I don’t have a TBI.  You’re wrong.  That doctor doesn’t know what he’s talking about.

Shock provides emotional protection from being overwhelmed all at once.  How long does shock last?  Just a few moments, a couple of days, maybe even weeks – or even longer!

The death/loss of a loved one due to a trauma (TBI, death, etc.) creates chaos within a family system – sometimes for generations.

Denial seeks to protect the individual by avoiding reality, not accepting facts, or using falsehoods (lies, disbelief, etc.) to keep from having to face life as it exists in the “here and now.”

“Pam, you have known that you have a traumatic brain injury. We have tried therapies and medication. Your progress has been good. But, we are at a place where your recovery will not go much farther. You have to understand that the brains cells have died and they do not come back. You are closer to the old you than you were, but getting all the way back is not possible.” Excerpted from “Acceptance of TBI’s Hard News: Words Nobody Wants to Hear!! by Pamela Taylor

STAGE 2 — pain/guilt

The emotional pain of a loss is almost unbearable.  But, it is important that the survivor and caregivers fully experience the pain.  Attempts to hide from or avoid pain, or to escape from it using some type of temporary relief (i.e.: alcohol, drugs, or some other form of addiction) only prolongs the pain.

When death follows the trauma, surviving family members need to focus on facing and working through  the pain.  Unresolved grief comes from lingering feelings of guilt.  It adds to the chaos.

  • Why didn’t I make him put on his helmet that day?  I always make him put it on!”
  • “I knew I shouldn’t have been drinking and driving!”
  • “I told her to always look both ways before crossing a street.  Why didn’t she listen this time?”

A survivor or a caregiver(s) having guilty feelings or feeling remorse over things done or not done only gets worse, not better.  He’s feeling helpless, not in control.  In this stage, life feels chaotic and scary.

“I had no place else to go.  No cure.  The old me had died.  The new me was taking over.  My standard self-pity party began rising up inside.  I wanted to crawl into the back seat of my side of the truck and hide.  I did not want to tell my husband that I was no longer going to be able to work or help him with the ever increasing piles of bills.  As I approached the truck, I looked up and saw he had fallen asleep reading his book in the front driver’s side seat. If it had not been so cold outside, I would have gone back into the doctor’s building for a bit to allow him to live in the ‘not yet knowing’ state that he would have to support me as I am for the rest of his life. I really didn’t want him to have to know and accept that reality more than anything.” Excerpted from “Acceptance of TBI’s Hard News: Words Nobody Wants to Hear!! by Pamela Taylor

STAGE 3 — anger/bargaining

Frustration gives way to anger.  The survivor may lash out and try to blame a caregiver, someone else, or even him/herself for causing the trauma event.  Meanwhile, the caregiver’s frustration at ongoing costs, increased levels of care, time and effort, as well as energy are being stretched to the limit.

It is crucial to control this type of reaction.  Too often, permanent damage to relationships may result if left unresolved or unaddressed.  If you have entered this stage, it may be appropriate, even vital to seek out professional assistance or help.  Often, it is family members that require such an intervention because the TBI survivor is already involved in therapies and counseling.

“It wasn’t until several years after my TBI my mother commented to me that there are worse things than death. She confided, ‘It’s one thing to have your child die in a car accident, but it’s another thing to have your child sustain a brain injury and live.’  I was speechless—not only because I was still unable to move my tongue to articulate, but I couldn’t believe what had just come out of my mother’s mouth. Was she saying that it would have been easier if I had just died that August night in 1989? I simply nodded my head in compliance.”  Excerpted from “A Living Grief” by Katherine A. Kimes, Ed.D., CBIS

During Stage 3, a deliberate, controlled release and processing of emotions should be carried out.  Restrained and unrestrained complaining, griping, vitriolic yelling or shouting often emerges from angst (fears).  Responses like these have little transforming value.

When a survivor or caregiver protests about how fate has disrupted daily life and asks, “Why me?,” bargaining has started.  With whom is the individual making a bargain – medical staff, God, fate, self?  A bargain has only one purpose – to find a way out of the “dark hole” created by the traumatic event (TBI, death, etc.).  A bargain doesn’t resolve or change a thing.  It doesn’t provide or result in any realistic solution to the problem. It’s time wasted that would be better used on practical, “here and now” actions.

“There are many dimensions of living grief. My mother and I experienced two spectrums. My mom’s grief is the living grief experienced by a mother for her child who did not die, but lived through a brain injury. My grief is the experience of brain injury.  I now live with a brain injury—it will never go away. It has taken over twenty-four years, but I’ve come to accept this. I’ve tried my best to move beyond this obstacle. My mom told me that she is “very proud of [my] determination and…many accomplishments.” She believes it was “this drive and determination that the accident didn’t take away.” I wouldn’t be where I am today without it.  I have had to find a way to move beyond my living grief and learn to live again. I can honestly say, this is not the life I had wanted, the life I had imagined for myself. I had dreams for my future. I can honestly say, TBI wasn’t supposed to have been a part of it.  I think I can safely speak for my mother, too, when I say this.”  Excerpted from “A Living Grief”by Katherine A. Kimes, Ed.D., CBIS

STAGE 4 — depression/reflection/loneliness

When survivors and caregivers enter this stage, they are “tired” and “ready to move on.”  Some get to the point of thinking, “ Shouldn’t Johnny/Mary/Susan/Bob (etc.) be better?  It’s taking too long.”  What triggers responses like these are depression, loneliness, reflection, feeling persecuted, despair, and fear of the unknown.  The cause of these responses – the survivor and caregivers are looking backwards.  “This is a normal stage of grief.  Experience it!  Don’t be ‘talked out of it’ by well-meaning outsiders”  who are offering off-hand, or bland/generic encouragement.  This stage is a necessary part of the grieving process.

In this stage, the true extent of loss is being understood (holistically).  Depression, isolation, and reflection activate the instinctual response to avoid feeling or going through them (feelings).  Isolating on purpose to endlessly mull over things and activities no longer possible, feasible, or available, focuses only on things lost.  Common to this stage are feelings of emptiness and/or despair.  “I’m alone.  No one understands.”  “I give up!

When things are so bad that you are ready to give up, DON’T!!!  There will be something or someone who will come into your life and make it bearable again. This has been my experience over and over again. Every situation will improve if you don’t lose heart and give up. It is the optimist about the worst situation who always wins! It may not be in the short term, but it is down the road in the long term.”  Excerpted from “When All Seems Hopeless!” by William Jarvis, Ed.D.

Each person needs to do his or her own work.  No one else can do it.  So, what is the work?  It is feeling, talking, examining, reflecting, and redesigning your personal life.  It is about letting go, forgiving, and moving forward.  For me, the most difficult thing to do was to forgive myself for being the one left here to live!Excerpted from “The Most Important Step to Healing a Broken Heart” by Janelle Breese Biagioni

What comes next?  Where is the journey of recovery going now?  Many in the TBI community have discovered and identified the existence of three more stages of the GRIEF MODEL.

CHANGE

STAGE 5 — upward turn

As the survivor and caregivers adjust to life post-trauma (TBI, death, etc), daily living becomes a little calmer and just that little bit more organized.  Physical symptoms are (sometimes slowly) improving, and depression is being managed (medication and/or therapy).  The therapeutic intervention and guidance come with daily exercises/tasks, coupled with feedback.  The survivor and caregivers are “working” to resolve identified issues:

  • new and old challenges
  • climb over, go through, or go around obstacles.

There has been that noticeable “upward turn.”  Change is happening and visible for others to see.

It’s been quite a challenge for me to learn how to better balance my grief journey, staying present and continuing to walk forward in this life without my son. I am blessed to have a wonderful husband and loving daughter, who both deserve to have me whole and as healthy as possible on a daily basis.”  Excerpted from “Nurture the Living” by Cathy Powers

STAGE 6 — reconstruction/working through

Each day, week, month, and year sees gradual gains and steady progress.  The trauma survivor:

  • finds capacities and abilities being redefined
  • alternative skills are developing and emerging
  • acceptance becomes a valued companion that contributes to developing realistic solutions to problems posed by trauma (TBI, death, etc.).

Caregivers discover:

  • how independence creates self-confidence – in them and the survivor
  • self-esteem/self-worth are being rebuilt and restored
  • interdependence develops
  • negative self-talk transforms into positive self-talk
  • paradigm shifts happen.

Even though limitations are a reality and exist, the survivor and caregivers find reconstructing their own personal life to be rewarding.

Feeling uncomfortable in my own skin, not recognizing the one living in my head and feeling like a foreigner in my own life.  I climb the craggy rock that tears at my self. It doesn’t stop me for I am determined. At first I was non-stoppable to get my old life back. Now I work to build a new way. Excerpted from Reinventing Oneself after Loss, Hilary Zayed

TRANSFORM

STAGE 7 — acceptance/hope

Accepting reality (living in the moment) and being accepted by others only happens in the “here and now,” not in the past.  The survivor and caregivers will not have instant happiness.  The pain and turmoil everyone has experienced because of trauma (TBI, death, etc) is a deep, unalterable life changing event/incident.  It’s impossible to return to the old lifestyle.  The paradigm shift to acceptance generates hope for the present and future.

Progress and change continue daily, at times unseen or unrecognized, yet ever present.  “Life finds a way (quote from Jurassic Park, the movie).”

Forward momentum happens:

  • planning new activities
  • building new friendships
  • rebuilding relationships with immediate/extended family and friends.

Reinvention of self after one’s identity is compromised is a long process . . .will my reinvention ever feel complete? Will the feeling of moving completely past loss ever happen? I will have to wait and see.”  Excerpted from Reinventing Oneself after Loss, Hilary Zayed

As long as there is life, there is hope.

What is one of the things you are willing to do for the living around you?  Sowing into people’s lives can be as simple as a smile, being a good listener, donating something you no longer use, or want to keep, to a charity.  Or, be kind to someone expecting nothing in return. What are you willing to do for the living around you?”  Excerpted from “Nurture the Living” by Cathy Powers

SUMMARY

What can be said about the process of grief after a trauma (TBI, death, etc.)?  If anyone ever thought going through grief was easy, let’s stop them in their tracks.  What is known – grief is necessary following trauma for the survivor and caregivers, or if death has happened, those still alive.

It has definite stages.  Each stage has purpose and restorative value.  While some may experience the stages one after the other, many will revisit a stage several times, or jump around from stage to stage, depending on the person and the situation.

Healing occurs because the survivor/caregivers and/or family . . .

  • recognize each stage as it emerges
  • change how to respond to the situation
  • transform and adapt to current circumstances.

REFERENCES AND RESOURCES

Blog Articles:

HOPE GENERATOR: Intentional Healing After Loss (http://janellebb.com/), Janelle Breese Biagioni – “The Most Important Step to Healing a Broken Heart”

When All Seems Hopeless!” by William Jarvis, Ed.D.

A Living Grief” by Katherine A. Kimes, Ed.D., CBIS

Nurture the Living” by Cathy Powers

Acceptance of TBI’s Hard News: Words Nobody Wants to Hear!!” by Pamela Taylor

 

Books:

SPRG—-Sustaining Powers: Rising Above Grief & Loss by Cathy Powers

JOUR—-After Brain Injury: Telling Your Story – A Journaling Workbook by Barbara Stahura and Susan B. Schuster

LFSG—-Lost & Found: A Survivor’s Guide for Reconstructing Life after Brain Injury by Barbara Webster

ROAL—-Reinventing Oneself after Loss by Hilary Zayed

 

Tip Cards:

EMOT – “Emotions: Hope After Brain Injury” by Ann Deaton Ph.D.

IRRA – “Irritability and Anger: After Brain Injury”  by Samantha Backhaus, Ph.D

JABI– “Journaling After Brain Injury” by Barbara Stahura

LGM  – “Loss, Grief, and Mourning After Brain Injury  by Janelle Breese Biagioni

3 responses to “BRAIN INJURY JOURNEY BULLETIN: GRIEF and LOSS”

  1. craig lock says:

    Hi
    Good article and thanks for sharing. Posted links on http://www.livingwithheadbraininjury.wordpress.com and https://www.facebook.com/livingwithheadinjury/
    , as well as my various other blogs on this subject

    Keep up the good work on your valuable resource
    craig
    PPS
    Best wishes from the First City to see the light

  2. Hi Pam: Great to hear from you. Thanks for responding to the article. Hope things continue to improve for you.

  3. Pamela Taylor says:

    Thanks for using part of my write up in this publication. I am moving forward and going to apply for a part time job in the area tomorrow. I am able to drive within 20 minutes of the house now. I am so glad for that. Acceptance is not easy but I am getting there – discovering what I can do and trying to let go of what I cannot. I just had a garage sale and got rid of a bunch of stuff that I no longer need. Cleaning out and moving on.

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