The Ripple Effect of Brain Injuries in Families, A Special Report – Insights and Observations

Who is Lois McElravy?

Lois McElravy is a brain injury survivor, speaker, and freelance writer. Born and raised in Montana, she is no stranger to Nebraska. In 1989, Lois fell in love with a Nebraska boy (Larry McElravy) and eloped with him to Coeur d’Alene, ID. Their new family resembled a mini-Brady Bunch. Both had daughters who were 5 years of age and sons who were 8 years of age.

Nine months into their new life together, a utility truck violently crashed into Lois’ car. The brain injury Lois sustained transformed a bubbly, intelligent, talented super-wife/super-mom with a promising career into a dazed and confused homemaker who needed help to care for her family.

When Lois was 12 years post injury, her brain started to function at a higher level. Doctors contribute these improvements to Lois’ consistent effort of doing many small things, over a long period of time.

Today, Lois has healthy relationships with her four children, who are now 24 and 26, and she just celebrated her 18th wedding anniversary. She continues to experience improvements in her abilities.

Lois travels and speaks at conferences, passionately sharing her emotional journey of adjusting to a sudden life change. She inspires and motivates others to overcome the adversities in their lives and teaches them how to effectively use humor to cope with the unpredictable swift pace of life. She imparts valuable insights she has acquired, the lessons she has learned, and provides strategies and solutions to improve the lives of others who have been affected by a brain injury.

Lois was the keynote speaker for the Nebraska Statewide Brain Injury Conference held in Grand Island NE on March 30-31, 2007. Grand Island Independent article – (attach pdf)

Lois returned to Lincoln, Nebraska in August, 2007 and April 2008 to present her character/keynote and humor workshop for Home and Community Services and Resources.

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Why is Lois passionate to share the wisdom, insights and lessons she has learned from living with a brain injury?

Brain injuries quickly deteriorate relationships, marriages crumble, families shatter and the survivor is left alone. Without professional help, there is little hope for the survivor to maintain healthy relationships.

Lois credits her rehabilitation, a happy marriage, healthy relationships with her children and extended family to the privilege of the on-going therapy and counseling she and her family received during the first ten years. Equally beneficial was the knowledge and support that Lois and her family received from others who had experienced brain injury or had been affected by brain injury.

Not everyone who has been affected by brain injury is fortunate to receive family support or get the professional help that they need to understand and adjust to the challenges of living with a brain injury. Reaching out to locate and take advantage of community resources, either locally (support groups) or via the internet, becomes even more important under these circumstances. Seeking to understand and learn from other’s experiences provides the opportunity to benefit from the services they received.

The “Ripple Effect” materials provide valuable insights and strategies for survivors, care-givers, family members and professionals – to bridge the gap of misunderstanding of brain injury and improve communication in relationships.

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What qualifies Lois to present the information in this report?

The information Lois presents in this report is based on:

eighteen years of personal experience of living with a brain injury
sixteen years of observations from involvement in local brain injury support groups and attendance at the annual brain injury conference
seven years service as a Board Member for the Brain Injury Association of Montana
two years experience as a volunteer at CMC Bridges Brain Injury Rehabilitation
conversations and feedback from survivors, family members, care-givers and professionals, whom Lois met at state brain injury conferences all over the United States as a speaker
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Who will benefit from the information in this report?

The information in this report benefits anyone who has been affected by brain injury – survivors, friends, family members, care-givers, and professionals…or a person who works with or has a relationship with someone who has been affected by brain injury.

It is important to note that the intention of this report is not to generalize, categorize nor label. Every experience with brain injury is individual and unique – for every survivor, friend, family member, care-giver or professional. The intended purpose of this report is to provide insights or trigger new perspectives that might bridge the gap of misunderstanding and improve communication in relationships.

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What are the benefits?

The most powerful resource for persons who have been affected by brain injury…are other persons who have been affected by brain injury. There is a magical connection that occurs between two survivors or between family members/care-givers.

Equally important as the support and encouragement that survivors and family members/care-givers provide to one another is the level of deep understanding and trust that exists. Survivors who are angry and resistant to cooperating with therapists or disregard the advice of family/care-givers will surprising be open to consider the exact information, coming from another survivor.

The same is true of family/care-givers who are opposed to following the advice of a professional. Another family/care-giver can provide the belief they lack, and build trust with the therapist or doctor. Family/care-givers are less apt to take offense and more willing to consider the constructive feedback and suggestions made by other family/care-givers about their care-giving than from another source.

In addition to the positive effect of the strong emotional connection between survivors and between family/care-givers, are valuable insights, tested strategies to adapt and cope with the challenges of living with brain injury and links to additional resources.

The professionals who make the extra effort to understand and acknowledge the feelings and the depth of challenge associated with brain injury gain the respect and cooperation of survivors and family members. Support groups are valuable resources for professionals to deepen their understanding. In addition, support groups are a powerful resource for professionals to provide an atmosphere for resistant clients to receive valuable information offered through other members.

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Successful rehabilitation requires family support, professional help, and community resources.

More often than not, persons affected by brain injury do not connect to services for a variety of reasons. Most of those who do receive services initially…don’t receive the on-going assistance that is necessary to help them continue to adjust as their circumstances change.

To make matters worse, the survivor complicates the recovery process with delays due to their denial or because of their inability to logically reason or accurately assess, they do not recognize a need for therapy, even though they continue to make poor decisions. In a nut shell, a person with a brain injury commonly doesn’t know…that they don’t know.

Once a realization is established, after recognizing that nothing seems to be going well and they don’t know why or how to fix it…the emotional cycling of grief occurs (shock, denial, anger, bargaining, depression, testing, and finally acceptance). It’s a double whammy for the survivor to be overloaded with such over-powering emotions and at the same time, lose their ability to control those emotions. Angry outbursts and fits of rage harm relationships and cause further troubles.

Acknowledging the loss and accepting the new reality are major components of “getting better.” This is not an overnight process. It often takes up to two years for the survivor and loved ones to fully accept the life change and adjust. And even longer for the survivor to find “self”-acceptance.

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What destroys relationships and isolates survivors from their friends and families?

There is plenty of confusion and endless mishaps just learning how to compensate for the physical and cognitive deficits caused by the brain injury. Negative emotions are at a high; and the ability to control them at a low. Family/care-givers and professionals unfairly become the target for this misdirected anger. If the survivor doesn’t learn how to control outbursts, relationships are permanently damaged over time.

The three MIS’s contribute to escalate relationship conflicts – MISunderstanding, MISinterpretation, and MIScommunication.

Here’s one example. Because the abilities of the survivor are easily and quickly affected by many variables, (sleep disturbances, inability to pay attention, poor memory, pain, medication side effects, rapid wear-down, environmental influences – to name a few) they demonstrate an inconsistency to follow-through with therapy or to develop new habits. Lack of follow-through is often interpreted by family or professionals that the survivor is not trying hard enough.

The survivor feels hurt because their efforts are not being recognized. They feel frustrated that others do not understand “how” difficult and exhausting that learning anything new is for them or how much longer it takes.

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What is the key to minimizing the confusion and damage of MISunderstanding, MISinterpretation, and MIScommunication?

Stephen R. Covey, in his book, The 7 Habits of Highly Effective People, advises us, “Seek first to understand, then to be understood.”

Just gaining an understanding of brain injury is a huge task. Taking the time and effort to gain the understanding of the thoughts and feelings behind the behaviors of someone affected by brain injury is an even bigger task.

Brain injury or not, we are all quick to draw conclusions based on our first impressions. If we make a habit to pause for a moment, to distance ourselves from our own emotions and opinions, we are better able to consider the situation from the perspective of the other person. This prevents jumping to wrong conclusions, taking offense when none was intended or making a scene by over-reacting.

Because the survivor’s ability to accurately assess and logically reason can be impaired, misperceptions occur frequently. For the survivor, the pause is critically important to make sure that they are interpreting the situation correctly. Simply by asking someone, “Please define what you mean” or by stating, “I am not sure what you are saying” can be extremely helpful to clear up confusion and reduce the potential for misunderstandings.

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Seek to Understand – Contradicting Perspectives

The comments in this next section represent the most commonly expressed relationship desires and disappointments that Lois has personally experienced and observed.

The survivor craves for others to “understand” their confusion, frustrations, challenges, exhaustion and emotions which stem from living with a brain injury. The irony is that the survivor expects family members/caregivers and professionals to understand some things that they often don’t understand themselves, nor can easily communicate.

Another irony of brain injury…while survivors resent being labeled “brain-injured,” (and rightly so) survivors are quick to label others as “unknowing or uncaring.” Survivors offend family, friends and professionals by their accusations.

Family, friends and care-givers want to understand, and many try far more than the survivor recognizes. Realistically, no one can expect to fully understand something they have not personally experienced. Acknowledging the difference between “understanding the experience of living with a brain injury” and “being understanding of a person who lives with brain injury” can eliminate causing offense. A simple way to do this is by asking, “Help me to understand…”

It is common for the survivor to be self-centered and not fully recognize the impact their brain injury has on others, until later in their recovery. When appropriate, it is necessary for family members/care-givers to gently remind the survivor that they are not the only one who was been affected. Others are also doing their best to adjust to changes and manage their emotions.

Family members and care-givers face the same challenges as survivors…grief, confusion, frustrations, exhaustion and emotions…but on a different level. In addition, they must deal with the survivor’s issues, too. They also struggle with finding the correct balance of providing help without doing too much for the survivor and knowing where to set boundaries, to not allow the survivor to consume their life.

Both sides unknowingly offend one another with their actions and words. Survivors refuse to accept help or listen to advice. Family members and care-givers grow tired from running rescue missions and taking the brunt of the survivor’s misdirected anger. When the survivor continues to disregard family/care-giver advice or help, they risk being abandoned and losing a valuable resource.

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Strategies to support the survivor’s personal growth and independence while providing a safety net and protection:

One strategy that works well for giving and receiving advice is for the survivor to identify two people that they agree to trust – unconditionally. The survivor agrees to listen to their advice, even when they don’t agree with them (based on the survivor’s inconsistency to accurately assess and logically reason.) The survivor also agrees to ask their “trusts” for feedback whenever they disagree with the opinions or advice of others. Survivors agree to accept the conclusions and advice the “trusts” provide.

This arrangement provides a valuable resource for the survivor to help them accurately assess situations, make good decisions and respond appropriately. Survivors know that if they don’t respect and accept the recommendations of the “trusts” they will lose their help. The benefit of having two “trusts” is that it allows some protection from receiving unreasonable recommendations or poor advice. The survivor can go to both “trusts” with the same request and if they do not give similar feedback, call a conference to resolve it.

Survivors often believe they are capable of doing more than they are realistically capable of maintaining. Family members and professionals, based on several reliable factors or because they want to protect the survivor from the disappointment of failure, assign a level of capability they believe is realistic for the survivor. Frequently the level of capability is somewhere in the middle of the two.

It is necessary to allow survivors the opportunity to stretch their limits…even to the point of failing. It is important for the survivor to come to his own conclusions about their limitations/capabilities, in order for healthy acceptance to take place. It is damaging to the self-esteem of a survivor when they feel others don’t believe in their potential and don’t support their desire to try something.

It is a painful process for those who care for the survivor to stand by and watch, because the survivor will repeat this pattern, looking to find something they can do which gives their life purpose. Resist the temptation to say, “I told you so” when things don’t turn out well, and instead find something positive to acknowledge þu “I admire your courage” or “Your determination makes me proud.” Helping the survivor to identify and focus on what was gained or learned transforms the disappointment into a valuable experience and helps prevent repeat episodes.

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Commonly occurring circumstances that affect relationships:

It is equally important to establish that the pendulum swings in both directions and make mention of other commonly occurring situations that affect relationships. We can wear ourselves out trying to figure out or fix “things.” Or we can accept that “some things will never make sense” and “there is not always a fix.”

Some of those “things” regarding brain injury are:

Some survivors stunt their recovery due to their own attitudes and behaviors, despite the outstanding family/care-giver support and professional services available to them.

Some survivors never receive any family support; other survivors are abandoned through no fault of their own.

Some family/care-givers stunt the recovery of their loved one by over-protecting or doing too much for the survivor.

Some family/care-givers devote their life to care for the survivor, either lovingly or resentfully. Sometimes their devotion is warranted, other times not.

Some family/care-givers mistreat the survivor, and vise-versa…some survivors are abusive to family/care-givers and professionals.

Some friendships survive brain injury, most don’t. The survivor can’t keep up with the swift pace, nor tolerate the environments of their previous social life. Even friends who are sympathetic to their survivor friend fade away.

Some therapists and doctors miss the mark when treating brain injury due to their lack of knowledge or understanding. Other’s offer the best care and advice they can…based on the accuracy of the information provided to them. Survivors need assistance in keeping and reporting accurate feed back to doctors. It is not uncommon for survivors to report how their month went, based entirely on the day previous to their appointment.

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Recipe for Recovery
Ask any survivor to describe their recipe for recovery, and you will recognize patterns.

Top resources on their list will be:

love and support of their families
medical care from their doctors and therapists
hope, encouragement and tools from support groups
Three key components commonly listed by survivors who were successful in rebuilding their life after brain injury:

1. Letting go of their previous life

previous identity – tied to ability and accomplishment
obsession to restore their life to what it was previously
anger and hurt
old friends
surrendering the need for control
2. Accepting their new reality

belief that their life has a purpose
self-acceptance of the “new-self”
acknowledging the need for help and the willingness to ask for it
using humor to cope
desire to help others and make the world a better place
3. Believing that something good will come from their adversity

strengths – resiliency, flexibility
deeper meaning of life – appreciation for the little things
spiritual growth – inner peace – no matter what happens, they will be o.k.
greater understanding – increased tolerance, less judgmental
more enjoyment – better balance of priorities
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Additional insights and strategies to increase your understanding of brain injury, improve communication, and build healthy relationships. See the following articles:
Seven Truths – The Ripple Effect of Brain Injury in Families
Another Seven Truths – The Ripple Effect of Brain Injury in Families
Language and Behaviors That Shut Me Down
Seven Tips to Improve Communication for Persons Living with Brain Injury
Brain Injury Resources and Additional Reading


Read Lois’ Personal Story – The Ripple Effect of Brain Injury – A Glimpse of One Family’s Story
Answers 4 Families and Lessons from Lois grants permission to reprint or post this material as long as this full signature line is included: is Nebraska’s support and information connection for families and professionals seeking assistance. Visit the Web site to connect with other families, professional staff, hotlines and other valuable resources to help you get the answers you are seeking.

©2007 Lois McElravy, Lessons from Lois – Speaker and freelance writer, Lois provides life-changing insights and strategies gained from her personal experiences of adjusting to a sudden life change and adapting to the challenges of living with a brain injury. Her message provides family members, care-givers and professionals with a deeper understanding of brain injury. Lois inspires and motivates survivors to accept their new reality, redefine their life purpose, and feel happy.

Article Signature:
Lois McElravy, Lessons from Lois, entertains, inspires and motivates audiences with humorous keynotes, workshops and adversity trainings. She provides life-changing insights, humor strategies and practical solutions gained from her personal experience of adjusting to a sudden life change when she sustained a brain injury nineteen years ago.

Her signature story provides family members, care-givers and professionals with a deeper understanding of brain injury from a survivor’s perspective. Lois inspires hope and motivates survivors to accept their new reality and redefine their life purpose. She equips them with strategies to manage their challenges, improve relationships and feel happy.

©2012 Lois McElravy, Lessons from Lois – Permission to reprint or repost this article is granted by including the above byline and Lois’ contact information.