By Mary C. Cantwell

Is it the young soldier
who fights for his country?
Is it the knight in shining armor
defending the honor of a maiden?
Is it the dare devil rider
who seems to fly over a canyon?
Is it the pilot
who risks life and limb over enemy territory?:
Is it the ruler of a country
whose decisions affect so many?
Is it the surgeon
whose skills save lives?
Is it the small boy
on his first day of kindergarten?
Or is it the young man
whose life changed in an instant;
who no longer needs his respirator;
who struggles with his gait;
who laughs and talks once again;
and who demonstrates courage
each and every day of his new life?

For more poems by Mary and Michael see:

Musings with Mary and Michael

By Mary C. Cantwell and Micahel R. Grego

If you look it up in the dictionary, it will tell you that ‘musing’ means:

• noun: a calm lengthy intent consideration

• adjective: persistently or morbidly thoughtful; pensive; pondering

By Janet M. Cromer

This book chronicles the seven year journey Janet shared with her husband after a massive heart attack and cardiac arrest left Alan with a severe anoxic brain injury. In an instant, the brilliant physics professor and prolific author lost his abilities to read, write, walk, talk, think, and remember. With intensive rehabilitation and ongoing cognitive rehab with janet at home, Alan did regain his essential abilities to varying degrees. 

In a memoir brimming with information, Janet describes how the couple composed a new life with meaning and gusto. While a full recovery was not possible, Alan made an equally valuable “Best Choice Recovery” by making the most of every opportunity to learn, contributing to others, and finding new ways to enjoy life.

The story is told from both Alan’s perspective, and Janet’s perspective as his caregiver. She honestly explores the changes in their relationship, ambiguous  loss and grief, caregiver stress, and the process of empowerment and reinvention. The challenges faced and coping strategies shared are relevant to families of adult survivors of all types of brain injury.

About the Author:

Janet M. Cromer is a psychiatric RN, licensed psychotherapist, support group facilitator, educator, and advocate. She speaks widely at conferences, hospitals, support groups, and community events. 

As a freelance writer, Janet specializes in feature articles for publications serving healthcare professionals, patients, and the public. The American Medical Writers Association/NE Chapter awarded Janet a Solimene Award for Excellence in Medical Writing in 2006 and 2008.

Janet also writes personal essays and poetry. As a Registered Art Therapist (ATR), she encourages people to get in touch with their creativity in any form or media. Creativity is much more than an artistic process and product. Creativity is the energy, goodwill, and attitude we bring to daily life.

You may  contact Janet at janetcromer2@gmail.com or visit her web site at http://janetcromer.com/

Professor Cromer Learns to Read: A Couple’s New Life after Brain Injury

By Janet M. Cromer

Professor Cromer Learns to Read: A Couple’s New Life after Brain Injury is the recipient of a Solimene Award for Excellence in Medical Communication and Neal Duane Award of Distinction from the American Medical Writers Association – NE Chapter.

To order, click here!

By Irene Young

Challenges and rewards of caregiving

Most of us have had the blessing to watch our children take their first steps, to hear their first words, to witness their first everything and to embrace them as they overcome the obstacles in their life.  Imagine if you would that it wasn’t your child, but your husband, your sister, or someone who is very close to your heart. I have had a recent experience that most wives don’t usually get. I have been blessed for the last four years to watch my husband not only live, but overcome life’s obstacles after his traumatic brain injury. Caring for a loved one who has had a traumatic brain injury (TBI) is not glamorous, by any means. But by setting goals and making a schedule, you and your TBI loved one will be well rewarded. 

As the caregiver, you will be responsible for not just goal setting, but you will be essentially the cheerleader for your loved one.  So it is extremely important to train yourself to be happy and positive, even when you don’t want to be. And there will be times when you don’t want to be. The caregiver needs to give words of encouragement, such as “great job!” or “you were very close let’s try that again!”

Recovery from a brain injury

No one really knows if, when or even how much an individual will recover from a brain injury, but setting simple goals can be beneficial to the survivor and the family. Their goals need to be realistic. Start small and work your way up. If your loved one can only hold a spoon and doesn’t know what to do next, set a goal to work on lifting the spoon to his or her mouth. Keep a journal and maybe video tape your loved one working on goals, not to critique it or tell them what they did wrong, but to replay it when the goal is accomplished. When my husband used to say, “I’ll never be able to do that!” I used to read from the journal I kept that reminded him that at one time he was not able to eat on his own, but now he can.

Don’t expect too much at one time. 

This will only add to both your loved one’s frustrations as well as your own. It may take a little longer than expected, but stick with the same repetitive goals. Remember your loved one has to retrain his or her mind to do things that you already know. I can remember expecting my husband to be able to do a simple thing like hug me, but even a simple hug needed to be retaught to my husband. It took him a whole year to learn how to wrap his arms around me and my daughter and gently squeeze. But when this blessing finally happened, it was like a fourth of July celebration at our house with fireworks.

Know when “Enough is enough.”

I cannot tell you how important this is. Sure go ahead and push your loved one, but watch for signs that signal he or she has had enough, such as getting angry, throwing things, or irritability. These are pretty good signs that your loved one needs a break.  Keep in mind that their attention span may not be as long as it used to be. As  the caregiver, try to think of your adult loved one as a child; I know it’s hard, but it is sometimes easier to make goals and set time limits if you keep this in mind.

Get organized!

As the caregiver you also need goals – this includes goals on becoming organized. This was very hard for me to learn, but I soon realized that people with a TBI need structure and don’t usually like change, so I had to put myself on a schedule. If you have small children or if you want a life after TBI, I assure you that you will need a schedule as well.

Set time aside for your TBI survivor, time for your children and time for yourself – all of these people are very important.

Set time aside – for yourself and others

I physically wrote the time I scheduled for me from 5 a.m. to 7 a.m. in a date book. It was my time to paint my nails, read a book, spend time with God and anything else that was just for “me”. You are not being selfish when you schedule things just for yourself. On the contrary, you are taking care of yourself so that you can be physically and mentally able to take care of your family.

Then, I would have time set aside for my daughter to play a game, color, or just sit and talk with her. While my daughter was at school, it was time for my husband: getting him ready for the day, bathing, dressing, feeding and helping him with his physical, occupational, and speech therapies.

Once I got good at these tasks, I found that even though I had scheduled time for them, it didn’t take me nearly as much time as I had originally scheduled. This gave me a little bit of time in between for a much needed rest.

Being a caregiver is all worth it

Yes, caring for a loved one with a traumatic brain injury can be very exhausting at times, but the challenges never outweigh the rewards and blessings for both the caregiver and their loved one. Watching your loved one take their first steps, hearing their first words, and witnessing their first everything are beautiful memories that will be remembered for a lifetime.

Be patient, goals are easy to set, but not as easy to attain, it has taken my husband four years to be able to take six steps without the help of anyone. He can now bathe himself on his own, and do all of his personal hygiene. It may take him two hours, but the fact is that he does it without any help. Questions that used to take him two or three days to answer now take only one day. His greatest goal he says is being able to tell his daughter how proud he is of her achievements, which he does on a regular basis.  

 Recommended reading

Life Changes: When a spouse or partner has a brain injury

 By Janelle Breese Biagioni and Marilyn Lash, M.S.W.

Information and tips to help spouses cope with feelings of loss and adjust to changes in roles when a husband or wife has a traumatic brain injury or blast injury. Explains importance of self-care and setting up a support system to cope with and relieve stress in families after TBI.

Helping Sons and Daughters: When a parent has a brain injury

By Marilyn Lash, M.S.W. and Janelle Breese Biagioni

Information on emotions and reactions of children when a parent has a traumatic brain injury (TBI).

Managing Care and Services after Brain Injury: A workbook for families and caregivers 

By Don Hood, B.A., Marilyn Lash, M.S.W., Ann Glang, Ph.D., and Bonnie Todis, Ph.D.

By Marilyn Lash, Editor

“Spend a day with me…walk a mile in my shoes.” Amid the changing landscape of professionals, programs and agencies, families are the constant in the life of a person with a brain injury. Yet too few people realize what it is like, day to day, unless they are a family member.

The Family Forum has articles by family members about their experiences, the ups and the downs, the struggles and the rewards. It is a place for information and support. We believe that families can also educate professionals about the journey of brain injury recovery over time by sharing their experiences.

The road to recovery is often complicated, confusing and filled with ruts, potholes and wrong turns. Yet there are also surprises and rewards as families witness the progress of a spouse, child, parent or sibling reclaiming life after a brain injury. Hope is very important as families travel this journey that has no end. It is an ongoing path throughout the life of a survivor. We hope that this forum helps families navigate this journey.

Please contact us…

This forum explores many areas. We will be constantly adding topics and articles. If you would like to send us an article to consider, we would like to hear from you. Below are guidelines to submit articles.

Topic…

Your choice as long as it is based on your experience.

Length…

2-4 pages double spaced

Format…

Microsoft Word file or file saved in rich text format.

You can send an article by e-mail…

Please click here

Or you can mail your article to…

Marilyn Lash, Director
Lash and Associates Publishing/Training, Inc.
708 Young Forest Drive
Wake Forest, NC 27587

Suggestions…

If there is a topic you’d like to hear about from families, please let us know.

By Denise Boggs

Grieving is hard to describe

Grieving is a deep sadness that we try to avoid, it is an anguish in your heart that words really can’t touch or describe. But, I know from experience that grieving is necessary and must be embraced when there has been a loss in your life. This would be a loss of anything that you loved and cherished, a child, a spouse, or the loss of someone the way they once were. Grieving is a time when you face the pain and the sorrow of what you have lost. This pain you feel after a loss is real; you feel it day after day as it lingers like a throbbing toothache. Will it ever end? The answer is yes, it will as you grieve what you have lost and release it.

After the accident

During the time when our son was in a coma after a horrible car accident, as I took a few hours to sleep, I would wake up thinking it was all just a bad dream. Then I would fully awake, only to find it was real, we had been hit by a semi truck, and yes, our son was in a coma, suffering with a TBI. At that point I was flooded with emotions; I felt an overwhelming sadness, even though I didn’t know at the time, what I had lost. In the days to come as he came out of the coma I realized the happy, carefree, young boy; my first born son, was not there. His body was there, the same eyes, nose, and mouth, but his personality and wit were just not there. He left with us that day in March, 2005 and never returned. Now, we have a brand new son, a different son, one we love, but, we had to grieve and release the son we lost March 26, 2005.

To grieve is to heal

Grieving is not a sign of weakness, it is an essential part of emotional healing. But, grieving should not be done alone, everyone needs comfort from someone who understands and cares. As you read this, your pain may be touched; the sadness of your own loss may surface. You may even feel overwhelmed right now. If you feel these emotions, you are grieving; don’t try to stop it, call a friend, a family member, or a pastor and ask them if you can talk and share how you are feeling. During those sad days; God never left my side, He was there, and I could feel His comfort.

“Yea, though I walk through the valley of the shadow of death, I will fear no evil; for thou art with me; thy rod and thy staff they comfort me.” Psalms 23:4

As I read the Twenty-third Psalm in the Bible, I was assured everyday that God was with me as I walked through the valley of the shadow of death. When the doctors gave shocking reports, God was with me, He never left me, His comfort wrapped around me like a warm blanket on a cold night. As I walked down the hall or sat silently in our son’s room watching his heart monitor, I knew I was not alone, He was there, giving me strength and hope. Now, five years latter the grieving process has finally ended. I grieved the losses and now I can celebrate our son and enjoy him and his new personality.

For more information please go to: http://www.tbihope.com/

By Denise Boggs

Child’s recovery from brain injury is emotional as well as physical

If your child or teen has experienced a traumatic brain injury (TBI), you may be aware of their struggle with emotions. Emotional recovery is very important after a brain injury and should not be overlooked.

There are five levels of emotional development. In some cases, people with a traumatic brain injury will go back to the very first level and start all over again in their emotional development. The ability to connect on an emotional level in a healthy relationship is the long term goal of emotional recovery.

When our son was fifteen, he suffered a TBI. We were not really sure what to expect as he came out of a forty day coma. He began to awake only to discover he was, in a sense, a “six foot infant.” He had to start all over, like a new born, slowly learning how to do everything.

Stage one of emotional development

Stage one of emotional development is the ability to receive love. For a child or teenager with a TBI, it is vitally important for both parents and siblings to be present during this stage. They should be interactive so their child’s spirit is awakened through nurturing. Physical touch such as holding your child for extended periods of time daily is most effective. In our son’s recovery, it was very obvious that physical touch activated the blood flow and drew his spirit to life. If holding your child is not possible, you might hold a hand, rub arms and legs, or kiss a forehead or cheek.

In our son’s case, the right side of his brain was injured. While he was in the coma, we gently rubbed his head on the right side to activate more blood flow, which proved to be very effective as he regained more and more movement in his left side. We could actually see the difference in alertness after his cheek was kissed and gently rubbed.

I believe that lack of nurture in early stages of recovery:

• Causes the spirit to remain in a slumber.
• Causes the child or teen to feel unloved, leading to insecurity and the need for constant reassurance of love later in life.
• Causes emotional growth and development to be stunted.
• Creates a void in the foundation stage of emotional development. If the foundation has a void, something is missing.

Stage two of emotional development

Stage two is “Independence.” Each child or teen is uniquely created by God as an individual. During the second stage of emotional development, a child will begin to explore their independence. We as a family observed that as our son felt secure and loved, he progressed quickly into this stage. He wanted to venture out in his own uniqueness. During this stage, a child or teen will test his parents’ love with acts of independence. For emotional development purposes, these acts of independence need to be handled correctly.

I believe it is important for parents to be careful to correct their child without crushing his or her spirit. Proper discipline is very important at this stage. A child needs to experience unconditional love. Even when a child is disobedient, love is still there for the child to receive. During this stage, a child will test a parent’s love in many ways. One way is by expressing their own desires, which may be different from their parents’ desires. Children need to feel secure enough in their parents’ love to say “No” without the fear of being cut off, shut down, or rejected.

Parents must allow their child opportunities to say “No” when it is appropriate in order to express their independence. Parents should give their children choices so they can learn to determine what they like or don’t like and feel the freedom to exercise choice. This continues to build trust in the parent/child relationship and prepares them to say “No” in adulthood. The adult person who has not learned how to say “No” can very easily be controlled and even abused by others.

Many times parents want their child to be just like them, but God created each child as a unique individual. Children need to have a loving and safe environment to discover who God created them to be. As they discover that they are unique, they need to feel that it is all right to be different from their parents.

Recovery after brain injury

This is also true in the recovery process. There is a time when the survivor begins to realize and embrace the reality of being different from who they were before the brain injury. It is important for parents to support their child who is learning to embrace a new self. Parents can give emotional support as their child learns to say, “Yes, this is what I believe and what I choose” or, “No, this is not me.” By encouraging new preferences, the child starts to build a new identity after the brain injury.

Our son Will loved to ride horses and wear western jeans and shirts before our car accident. However, as his uniqueness was being developed after the accident, he didn’t want anything to do with western wear and our family had to accept the new him. We allowed him the choice and when he said no we respected this new choice. This was especially hard for my husband because he and Will rode horses together and now his “new son” didn’t like horses at all.

The role of a parent in this stage of a child’s emotional development is to:

• Affirm who they are and their differences
• Allow the child to make choices with safe boundaries
• Provide accountability to stay within boundaries
• Set and encourage attainable goals
• Carry out appropriate disciplinary consequences when behavior is unacceptable (see Proverbs 22:6, Proverbs13:1, Proverbs19:18)
• Encourage unique gifting, abilities, and interests

Caregiving after brain injury

Now, if you are the caregiver of a child who has had a brain injury, go back over the role of a parent and recognize that this is also your role as a caregiver. A caregiver who does not take this role – to monitor and encourage emotional development – will see the effects in years to come.

The brain can be re-trained, just as a child is trained in right from wrong. A child who is not taught right from wrong and how to choose what is right will become rebellious and will not respect authority. A survivor of a TBI who has not been taught how to make the right choices will flounder in life. They will also have a greater chance of getting into trouble and rebelling against authority later on as they get older. They may try to gain independence in the wrong ways by finding fault with the family as a reason to separate and individuate from them. The right way to gain independence is to have a solid and secure foundation, knowing one is loved and accepted and therefore having a strong self-worth regardless of disabilities.

For information on the additional information on emotional recovery, please contact us at:

Living Waters Ministry, 828-632-3906 or www.tbihope.com

By Janelle Breese Biagioni

You have undoubtedly heard the saying – “You can do this the easy way or you can do it the hard way!” However, what if the task at hand, as in grief, is already hard? The reality is there is no easy way to grieve. When grieving a loss – whether it is a death, catastrophic injury, chronic illness or transitional loss – the journey is hard, long, and difficult. Furthermore, the grief journey can be longer and more difficult if we do not engage in the process.

Avoiding the pain…

It is natural to want to avoid painful situations and for us to encourage others to do the same. Unfortunately, we also live in a society that supports the myth that “moving away from the pain” is the best way to move life forward or get things back to normal after a tragedy. As an example of how society supports this, consider the following: How many employers do you know whose human resource policies allow an employee more than three days bereavement leave if a death occurs in the family? And, how many of those employers have an open-ended list of people that qualify as important enough to warrant giving bereavement leave to an employee should someone on that list die? Not many – if any! The provision is usually for the death of an immediate family member as in father, mother or a sibling.
But what about the person whose family are their friends? Are they not entitled to time off when their “stand-in mother” dies just because they don’t share the same blood? There are many individuals whose family is not close, or who are not on good terms with their family and therefore, garner their day-to-day support from friends. In essence, these friends have become their family.

The meaning of time…

Commercially, we are flogged with the perception that anything worth having is instantaneous – high-speed email, fast food, digital pictures, instant messaging and on and on. It is no wonder that society holds the false expectation that when tragedy strikes, people should “heal fast” and “get back to normal as soon as possible” so they are fun to be around again! For those who have traveled the journey of loss, we can tell you – it is not that easy.

The more accurate and supportive phrase for the bereaved is “time heals all”. Keep in mind however, that time doesn’t heal in the sense that it “fixes” what is broken. It heals in the sense that by taking all the time we need to feel, remember and acknowledge the reality of our loss, we are able to move forward in life. In fact, it is the only way to heal and to move life forward.

Recognize and respect the loss…

To engage in the grief process is to suspend life and to be fully aware of each aspect of the loss, including secondary losses. For example, if you are catastrophically injured, you may not have the ability to return to work and as a result have limited or no income. The loss of financial security is a secondary loss. Each loss and every aspect of the loss can be a source of pain and must be grieved. Unfortunately, you cannot grieve the losses simultaneously – each loss needs to be worked through individually and yes, this takes time.

The good news is that by engaging fully in the grieving process we can come to terms with the loss and eventually renew our capacity to love, laugh and plan for the future. As difficult as it sounds, there is no way to the other side of grief except to go through it. Take time to heal – for however long that takes! You are worth it!

 Recommended reading:

A Change of Mind: One Family’s Journey through Brain Injury 

By Janelle Breese Biagioni 

Book on marital stress and adjustment by a family when a spouse has a brain injury. Discusses emotional trauma for family, grieving, mourning, parenting, and caregiving after severe head trauma.

 By Tracy Spracklen 

 Can Someone Tell Me?

Can someone tell me?
Where is my son is he lost for ever?
How come he can not talk to me,
what is his purpose now?
If he is here then how come he does
Not know me?

I am lost for words when I see my son
so far away.
He seems to be in another world that I know
nothing of nor have seen.
Is this world that he lives in now one that
he will stay in forever?

Why is there so much pain and so much confusion?
How come we all have to go through pain?
Will he ever look at me and say “Hi Mom” again?
How can he just live his life just looking
in to nothing?

Can you tell me is my son lost for ever?

©Tracy, Robert’s Mother

 Why Doesn’t He Show Himself…

From day one our lives have changed for ever…

Why doesn’t he come out God?
My hopes and dreams for Robert are now disappearing with the wind…

Let me have Robert my son back God…

The word MOM is now past tense…

Why Robert, Why Me God?
When I saw my baby for the first time on that day,

I just thought WHY…Why Robert?

Is Robert In There?
I cry, I think, I listen, I wonder, and I pray…

Where is Robert?
So many hours so many days go by and only small things appear…

Is Robert really in there or is he lost forever God?
I ask God to help me make it and give me strength to make it day by day…

Is the baby I had at one time there God?
I have gone through the shock, denial and blame…

What is next God?
So where has Robert’s smile gone and all the joy he brought to all of us?

Why us God?
I sit and wait for anything to happen day by day and hour by hour…

How much longer God?
So if you hear me God,
Please just give me back my baby Robert.

©Tracy, Robert’s Mother

  What May Come Of Their Lives?

 Some times you get up in a wonder.
What May Come Of Our Child’s Lives?

We might ask, “What is today going to bring
that yesterday did not?”

What may come of our lives is what we ask everyday.
Is there anyone that can answer such a question for us?

If some thing was to happen to us the caretaker,
Then what would become of our child’s life?

There is no answer for this for each day brings a new meaning
to the words and lives of a caretaker.

We may cry, we may even smile and
we even hide our fears and frustrations.

But one thing is for sure we ask our selves everyday.

WHAT WILL BECOME OF THEIR LIVES?

©Tracy, Robert’s Mother

Tracy Spracklen is the mother of Robby who survived a traumatic brain injury. She invites readers to visit her website at http://www.robbyschiffernstbi.com.

If you print these poems from the website, please respect Tracy’s copyright and ask for permission to make copies or use them in any printed material.

By Daniel Thacker

Visits from demons in the night

I awoke in a cold sweat, my nightclothes soaked and clinging to my clammy, quivering body. My heart was racing like a speeding jaguar and my breathing was so erratic, it felt as if some unseen hand had me by the throat, squeezing the life out of me!

I sat up in my bed, which looked as if a trio of demons had been frolicking around in it all night. As I slowly began to get my heartbeat under control and regain some semblance of normal breathing, I began to look around me, as if to assure myself that there really were no demons in bed with me!

There were none, at least in the physical sense. I looked toward the window on the other side of my bedroom, opposite the doorway, and saw sunlight filtering in between the blinds. “Its daylight outside,” I thought, “but why do I face this terrible darkness when I awake?” Knowing that facing this new day is really just another old one that contains more of the same realities I have tried to cope with for thousands of new days past. Always, I hope for that one day when I can truly waken to a new day and one when I can finally say, “Goodbye darkness.”

So many goodbyes

Goodbye to the awful memories of the accident, to wonderful plans that have been made for a future with a kind, loving, laughing and happy-go-lucky young boy who, at the tender age of ten, thought life would go on forever. In his mind, there would always be a tomorrow, another day with Dad, another day to tease his older sister and con his way out of minor difficulties with his charm and soft, smiling brown eyes that his mom could not resist.

Goodbye to the one whom once occupied the now empty chair at the table, the empty bed where his head once lay, beneath the Jesus light that brightened his night so that he would never be in darkness. Goodbye to your own peace of mind and contentment from having such a child to share your life, your hopes and your dreams.

Yes, that is darkness in a world of sunshine, a demon that tortures with its own brand of misery that leaves no physical scars but has you crying out in heartwrenching agony with such a special kind of pain, that you feel as if your very soul has been cast into a burning hell of another kind. Always the question comes. “Why? Why him? Why me? What did he do that was so terrible to justify being separated in such a horrible way?”

The trip I would regret forever

It was late April 1982 and we had just returned from a week’s vacation in southeastern Kentucky where we had been visiting some relatives. It was our first trip to the south and the kids were excited about meeting new folks, seeing the old south and how the folks there lived in comparison to the way the city folk in Blaine, Minnesota lived. It was a great trip and everybody had such a good time, they dreaded to see it end so soon! As expected, my son, Derek, began with that irresistible charm of his and this time he had plenty of help from his equally charming sister, Sandy! His mother, Angie and I knew we were going to lose this battle! Not that we offered much resistance because we, too, hated to see this vacation end so soon.

So we decided to continue with the gypsy spirit and travel on to Arizona to visit with the children’s grandparents. We immediately began preparations to leave right away while the traveling mood was upon us. We reloaded the camper, made arrangements with our friends and neighbors to look after things for us again, and set out for the old west.

We had several days of just cruisn’ along and enjoying the scenery with stops along the way at the Apache Indian Reservation and the old Union Army Forts along Interstate I-40. We arrived at our destination in Concho Valley, Arizona, at the home of Angie’s parents. Needless to say, we were somewhat tired and relieved that the trip was over! Everyone had a happy reunion and caught up on all the latest news and gossip. Then it was suppertime, showers and preparations for early bedtime.

The new day began at 6:30 a.m. and to my surprise, the kids were already up and about, eager to search for new adventures and investigate their desert surroundings! After breakfast was over and the kitchen put back in order, I received a phone call that required my presence in the town of Holbrook, Arizona. It was to be a trip that I would forever regret.

As I was preparing to exit the driveway to begin the long, boring trip, my son came over to the camper and climbed up on the running board by the driver side window. He appeared uncertain and somewhat sad about my departure. I had asked Derek earlier that morning if he wanted to ride along with me. His face lit up with the anticipation of spending time alone with Dad! We always had such a great time together whenever we did have time to share. But now, he was having a problem saying what was on his mind! I asked him, “What’s wrong champ? Are you ready to get on the road again?”

He had such a hurt look on his face that I began to worry that something dreadful had happened. Finally he said, “Dad, what should I do? I told you I wanted to go with you, but Sandy will be all alone here and since she is not ready for another trip, she asked if I would stay and go rock hunting with her at the base of the cliff across the road,” pointing to a rock formation about a hundred yards on the other side of the highway.

Well, knowing what a nut Sandy is at collecting and how protective Derek has always been about his sister, I could see the indecision on his face and how difficult this must be for him. Trying to hide my own disappointment, I said in the most nonchalant voice I could muster, “Sure, it’s a great idea, by all means you need to be with her. You can’t let her go off alone over there, not with the rattlesnakes and scorpions they have in this country!”

I saw the light appear in his eyes again and the look of relief on his face and I knew, somehow, that it was the answer he needed to hear. It turned out to be, in my mind, the worst decision I have ever made in my life!

After a big hug and kiss through the open window of the truck’s door, he jumped down and waved, shouting, “Goodbye” as I pulled out onto the highway, heading into what was to become a living hell of darkness.

A final parting

As I traveled along, thinking of our parting, I began to have a silly notion that maybe the kids changed their minds about exploring and maybe Derek would want to come with me after all. So I reached over to turn on my CB radio, hoping to hear his voice calling me from the base station radio at his grandfather’s house. It was about 11 a.m. when I thought I heard a call for the Blue Jay, my CB handle! But I was already a good distance down the road and, what with the mountains and all, I lost whatever signal I had.

So I continued on my way, thinking maybe I was mistaken and only wanted to hear the Blue Jay call! So I soon let the thought pass and arrived in Holbrook. Upon completion of my business there, I immediately refueled at the truck stop and headed back to Concho Valley, driving somewhat faster than the speed limits allowed. I began to feel an uneasiness that I just somehow couldn’t shake, even after trying to convince myself that I was being a worry wart, that everything is fine. Little did I know that the clouds of darkness were already beginning to gather and the light of my life was fading away.

I arrived back in Concho Valley about 2 p.m. and as I turned in the lane leading to the driveway where the folks lived, I saw a large number of cars and pickup trucks parked at all angles – in the driveway, the yard and even by the side of the highway! Before I could even stop my truck, I saw Angie’s sister running toward me, waving her arms and crying. I suddenly felt hot, then cold. My heart was pounding in my chest like a jackhammer. I heard again the CB call, and felt, once again, the unease and I somehow knew that my worse nightmares were only just beginning. I slammed on the brakes and jumped out of the truck. “What’s wrong” I asked, What’s happening here, who are all these people at the house, why are you crying?

“Oh God, Danny,” Arlene said. It’s Derek!  “A car with two drunken marines in it hit him while he was crossing the highway! It happened shortly after you left for Holbrook.” Dad tried to reach you from the base station but he couldn’t get a clear signal to you.  Derek was still alive when the ambulance left with him a short while ago but we just received a call from the hospital that he died! The doctor said that his brain was so badly damaged that he was already brain dead and that if, by some miracle, Derek had lived, he would have been in a vegetative state, constantly connected to machines.

I was in shock. I couldn’t respond. My mind was just not willing to accept what I was hearing. But gradually the reality started to set in. I began to digest, somehow in my shocked state of mind, what Arlene was saying. The truth was beginning to sink in and squeeze my guts until I could almost taste the bile rising in my throat! With my head still spinning, the tears streaming down my face and my heart breaking into a million pieces, I began to get the details of what happened after I left that morning, May 2nd, 1982.

Derek and Sandy did go exploring across the highway, by the formation of rocks at the base of the cliff. After they had looked around for awhile and found a few interesting stones to add to their collection, they proceeded to return back across the highway to the house. The highway was straight for more than a half mile in either direction, with no obstructions to block visibility of any on-coming vehicles. Sandy had crossed the road first and was waiting on the other side for Derek to cross. Suddenly, as Derek reached the centerline of the highway, Sandy yelled at him to stop! “Go back,” she said “there’s a car coming!” Derek stopped, saw the car and turned to go back. He made about two steps when the car swerved into the lane Derek was in and struck him at full impact, knocking him through the air approximately twenty feet before he landed in a torn, mangled heap on the side of the highway.

After getting what details I could from Arlene, I left immediately for the hospital. When I arrived there about 25 minutes later, I learned that Derek had expired and was removed to the local funeral home. I don’t think it’s necessary, at this point, to go into details of my son’s condition when I finally saw him lying there on the metal table. Only that what I saw will forever be a part of what memory I still have left after my own, later, head injuries.

An investigation later determined that after the driver applied his brakes, there was a space of 22 feet where brake residue was released before the brakes dead locked. Then there were another 90 feet of skid marks before the car hit Derek, propelling him twenty feet down the road. This, with my son weighing 110 pounds! Yet, it was concluded that the vehicle was traveling at 55 mph.

It was further determined, by my own investigation, that the two marines, who were enroute to Camp Pendleton, California from Blue Water, New Mexico, had stopped up the road in St. Johns where they had a “couple” of drinks in a bar and purchased a six pack to go! It was discovered, at the scene of the accident, that the six pack had been consumed prior to the accident, within a distance of only 14 miles! Because Derek was still alive when the ambulance left, the highway patrolman said he could not detain military personnel enroute to their military installation! So the two marines were released to continue on their way!

Searching for a brighter light in the darkness

There are many types of death with brain injury. With Derek, it was the death of physical pain and suffering. That’s the “blessing” you often hear preachers talk about. But, in my opinion, no violent death is a blessing! Not in the hearts and minds of those who must endure the darkness of their own private hell! Whether it is the death of a loved one or the other deaths that many victims of brain injury must face, I still cannot see the blessing in that.

I can, however, see the need for assistance, for rehabilitation, for patience, understanding and compassion. Brain injury victims are entitled to the same chance of restoration as the train station, the caboose of the old railroad train or the library. These victims deserve the chance to be repaired, to have restored to them some of the ability and dignity they lost, along with a portion of their brain that once permitted them to contribute and function in society as did the aforementioned train station, caboose and library.

It is our duty, as advocates, to attempt to shed a brighter light upon the darkness of ignorance and the often-devastating effects of brain injury. Stories such as mine are intended to show some of the horrors that brain injury can have, not only upon the victim but upon their family and loved ones as well.

Until we all can be made fully aware of this injury and its devastating effects, and until we realize that there is help that can be made available if Congress and our State Representatives will only open their eyes to the same vision with which they view other disabilities, needless hardships and suffering will continue. It is, today and always, my fervent hope that all brain injury victims and their loved ones can, one day, say “Goodbye to Darkness!”

By Garry Prowe and Jessica Whitmore

Surviving the brain injury is the first step

The single most important element to successfully surviving a brain injury is learning to live with the inevitable mix of impairments—physical, cognitive, emotional, and/or behavioral—that accompany a major insult to the brain. This is true for the survivor as well as the people close to the survivor. This is true on the first day of the survivor’s recovery and every day thereafter, until he or she passes from this earth.

Recognizing and learning to live with permanent impairments after brain injury

My wife Jessica’s automobile accident caused irreparable damage to her brain. A split second of inattention permanently transformed her in many ways. For Jessica to recover successfully from her injury, the most important thing she needed to do was to recognize and learn to live with her new impairments.

Professionally, Jessica could no longer work as the information management consultant who advised colleges and universities across the country. She could no longer be the cool, calm, and collected speaker at conferences, nor the multitasking expert in constant motion—simultaneously tapping on a keyboard, talking on the phone, meeting with a colleague.

In her personal life, Jessica—a lifelong animal activist—could no longer dream of participating in major animal rescue missions such as those that follow catastrophes such as hurricane Katrina.

This kind of permanent transformation is a disturbing, if not devastating, fact for both the survivor and those who love her to acknowledge. Yet if her recovery is to be successful, the person with a brain injury, as well as the important people in her life—spouses, parents, siblings, children, friends, and co-workers—must adapt to the grim reality that their survivor has been changed forever.

For Jessica, professionally, this meant giving up her job. She understands that she now can focus on only one activity at a time—sometimes two on a good day. She shudders at the thought of speaking to even a small group of strangers.

For Jessica, personally, this meant modifying her animal rescue ambitions. Today, she fosters stray animals at home and volunteers at a nearby monkey sanctuary.

For Garry, the caregiver, Jessica’s TBI meant transforming the way he viewed Jessica and her capabilities. Garry, like all caregivers, had to recognize that Jessica suffers from permanent impairments. He had to understand how these impairments affect Jessica. And, he had to learn how to accommodate these impairments.

Learning to live with being changed forever after a brain injury

Garry Prowe and Jessica Whitmore

Recovering from a brain injury is an ongoing process. In a successful recovery, both survivors and caregivers clearly recognize and effectively adapt to the enduring consequences of a brain injury without frustration, anger, or resentment. The caregivers must always be aware that these changes are manifestations of the survivor’s brain injury, not conscious choices, or failures of character.

This is far from easy. Just the other day, more than eight years after Jessica acquired her brain injury, Garry doubted her efforts as she helped him pay the monthly bills. We were updating a spreadsheet on our computer. We do this at least once a month. Garry was eager to complete this chore and return to writing this article. However, when Jessica began to wade through her notes on updating spreadsheets—for at least the 1,000th time—Garry’s frustration overwhelmed his reason. He unjustly and robustly accused Jessica of being too lazy to take the time to learn to work with spreadsheets.

But it wasn’t laziness on Jessica’s part. Her inability to remember how to work with spreadsheets is due to a permanent cognitive impairment caused by her brain injury. After eight years, Garry still needs to be reminded, at times, that Jessica is doing the best she can.

Creating conditions for successful, ongoing recovery after brain injury

We have seen far too many recoveries that are unsuccessful because the survivors’ significant others—even their own families—are unable or unwilling to acknowledge and learn to live with the unwelcome changes brought about by their loved ones’ brain injuries.

Our friend, George, for instance, is alienated from his family. They made little effort to understand his condition and continually accused him of malingering. “Why do you keep blaming your difficulties on something that happened years ago,” they asked, one time too many.

George also received poor performance reviews at work because his petty-tyrant-of-a-boss refused to make the few accommodations George needed to be a productive employee.

George’s story is heartbreaking. Far too often, misunderstood survivors live lonely, isolated existences, spending countless hours sitting home alone watching television, worrying about how to pay the rent.

You must change your mind after brain injury

Jessica’s recovery from her life-threatening, life-changing traumatic brain injury is, to date, mostly a success. This success is, in no small part, due to our recognition that Jessica was changed irrevocably. Without this understanding, we would have unreasonable expectations. We would be waiting for Jessica to return to the way she was before her accident. We would be setting goals that are unachievable.

Expecting a person with a brain injury to return to her previous state is a surefire way to fail. To succeed, you must change your expectations, or as we see it, “you must change your mind.”

We would be grateful to hear from you. Together, we can make life easier for future survivors of brain injury and their caregivers.

Garry Prowe and Jessica Whitmore are writing a book titled We Changed Our Minds: Successfully Surviving a Brain Injury. This article is the first in a series that will cover many aspects of the recovery and rehabilitation from a brain injury. The purpose of the series is to examine the elements that contribute to a “successful” recovery from the perspective of both the survivors and their caregivers.

Garry and Jessica welcome your comments at GarryandJessica@BrainInjurySuccess.org
Or, visit their website at http://www.braininjurysuccess.org/