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…

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.

Permission to copy or reprint this article is provided by 
Lash & Associates Publishing/Training Inc.

www.lapublishing.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.

A Parent’s Grief – Goodbye Darkness

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!”

You Must Change Your Mind after Brain Injury

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/

Riptide – A Husband’s Traumatic Brain Injury 

 by Barbara Stahura

An injury to the brain is unlike any other injury 

In my favorite photo of us, we’re astride Ken’s BMW motorcycle in our Tucson driveway. Ken is laughing at the camera as I, sitting behind him with arms clasped around his waist, kiss his ear. We wore none of our usual protective equipment—full-face helmets, boots, jackets, gloves—because we had jumped on the bike strictly for the photo. Months later, Ken was wearing all his gear when he took his other motorcycle, a Ducati sport bike, to run some errands. But when a white sedan turned suddenly in front of him, there was nothing he or his equipment could do to prevent what happened next. Ken hit the passenger side near the back wheel; helmet striking steel, face smashing into helmet, brain slamming into skull. He crashed to the asphalt. The sedan disappeared.

An injury to the brain is unlike any other. Along with physical functions, the brain controls awareness, personality, temperament, and cognitive processes like memory—all those things that commingle to form a “self.” And while that self does not necessarily reside in the brain, the brain is the part of us that animates it. So a traumatic brain injury can kidnap the dear self of someone you love, dragging him far from shore as a riptide does a swimmer, sometimes beyond rescue, even though in reality he is holding your hand or smiling at you across the dinner table.

The shock of seeing him in the hospital and hearing the words “brain injury”

The day of the accident, exactly nine months after our wedding, Ken left around noon and had planned be home in a couple of hours. Instead, I found myself at the University of Arizona Medical Center’s ICU around 7 p.m., staggered by the sight of my husband. There was a ventilator tube in his mouth; a cervical collar around his neck; a stitched cut above his left eyebrow; left eye purple and swollen shut, right eye nearly so; nostrils filled with crusted blood; broken right hand captured in a sling; left hand tethered to the bed rail. Naked under a single sheet and his face streaked with dirt, Ken moaned and tossed in delirium.

A CT scan showed two minimal contusions on Ken’s brain. The neurologists told me worse injuries invisible to imaging machines were likely. The brain floats within the skull, and if the head’s momentum stops suddenly, as Ken’s did when it came to an instant halt against the car, the brain rebounds within its bony home in a motion called coup contrecoup. Neurons are sheared off: Millions of connections in that tiny, internal universe can, like exploding stars, blink out of existence in an instant.

My husband now speaks but can not communicate 

That Ken had suffered a traumatic brain injury (TBI) became apparent when he could talk again, four or five days after the collision. Much of his speech consisted of parroting words in a sing-song voice. After developing aspiration pneumonia, he tried to cough but couldn’t cough deeply enough for relief. Smiling at him and stroking his forehead, I said, “Bummer.” He sang back, “Bummer, bummer, bummer,” much as a toddler would.

Next, he began repeating nonsense phrases. The first was, “Happiness is, happiness is,” in a gentle rhythm. I added, “Happiness is a warm puppy,” which he chanted for a while and gradually transformed to “Happiness is a warm country.” But as Ken began to speak in complete sentences, I grew more alarmed.

“I have to rewire your circuitry so I can manage you better,” he told me in all delusional sincerity. He claimed his staid, seventy-seven-year-old parents were members of a steel drum band; no, wait, a plastic drum band. He insisted he had to get up and care for his patients (he’s a software engineer) and that Scott, his chiropractor, repaired his motorcycles. One night, when he couldn’t even sit up without help, he somehow clambered over the bed rail, wandered down the hall, and fell, hitting his head. Fortunately, he incurred no further injury. The nurse who called me said he kept repeating, “I have to find the motion. My wife and I have to find the motion.” He didn’t know where he was or what was happening. Even worse, he didn’t know that he didn’t know—a very bad sign.

After this incident, Ken was placed in a Vail bed, a mesh-sided, enclosed bed that zips from the outside. Much better than putting him in restraints, the nurse told me.

Ken’s short-term memory also had been damaged. He recognized everyone who came to visit but for weeks could not recall that anyone but me ever had. His speech therapist hung signs in his room as memory aids: “I was in a motorcycle vs. car accident on December 29″ and “My wife’s name is Barbara.” She also started a memory book for him, to which I added photos of our wedding, his kids, our house, and our cat, along with affirmations proclaiming good health and normal life.

During the first few weeks, even though Ken carried on long—if sometimes weird and oddly chatty—conversations, he never really engaged with anyone. He spoke animatedly, but his gaze was distant, unconnected. Although physically in the room, he was not present; he existed in some inward place, unable to transcend the damage to his frontal lobes.

He is s different person – is this my husband?  What will it be like to live with a person with a brain injury?

His rehab team warned me that impulse control is often a casualty of TBI, and Ken was no exception. Still weak and in danger of falling, he moved too quickly for safety. He gobbled his food. I became a nag, perhaps too protective but terrified of another injury. I reminded him again and again to slow down, be careful. Stubbornly, he refused, brushing away my concern like a pesky fly. Once, I cried in frustration, fearful that he would choke on huge forkfuls of dinner. He simply looked past me with distant eyes and continued bolting his food.

A month after the accident, Ken developed a pulmonary embolism and was transferred from rehab to an acute care hospital. One morning, he called me from there. “I don’t know where I am,” he whispered. “I think I’ve been kidnapped by foreign nationals.” I stood in our kitchen, phone to my ear, stunned. Just yesterday, he had sounded so normal again. Where was the man who had looked so intensely into my eyes as he said, “I do”? Smart, articulate, an enthusiastic reader, an excellent computer programmer and woodworker, the real Ken had disappeared, replaced by someone who looked just like him but was missing essential ingredients. Should I have applied for his Social Security disability, as his case manager had advised? Would I forever be his caregiver, exhausted, frightened, and missing him?

If I could only see inside his brain

I wanted more than anything to look inside Ken’s brain, to see what the scanning machines could not, to find his lost self among the blasted neurons and bring him home. I researched TBI on the Internet, read books about it, and found many chilling and many encouraging stories about survivors. I pestered Ken’s doctors and therapists with questions—Would Ken’s brain heal? How much? When? —but of course, no one could provide the answers. There was nothing to do but move through the days.

When a reason for hope appeared, I clung to it—the first time Ken hugged me, remembered our phone number and called me at home, recalled a visit from neighbors the night before. And when hope lagged, I read reminders I’d hung around our house: “Relentlessly Optimistic.”

Two days before his homecoming, my husband made an omelet—perfect and golden—just as he used to make for us every Sunday. All by himself. It was part of his occupational therapy. I took photos, the last one showing Ken standing in the rehab kitchen, proudly displaying his creation. We ate it for lunch. Later that day, he couldn’t remember the word “omelet.”

Nine months post-accident, Ken still fights headaches and fatigue, and fears he’ll always be wobbly on his feet. His memory is better, although the right word often eludes him, but he still wrestles with once-easy tasks, thanks to damaged cognitive functions. He has sold his two remaining motorcycles, returned to work, and vows he won’t abandon himself or me by giving up. Nearly released from the riptide, my husband, resolute and a little scared, struggles to free himself for good. When we vacationed along the Pacific Ocean, we walked the beach every day. I watched Ken cheering the surfers cresting their waves, and I silently cheered him, praying his determination would be enough to return him all the way to shore.

This essay originally appeared in the Jan.-Feb. 2005 issue of Science & Spirit

See more articles by Barbara Stahura about returning warfighters with TBI:

http://www.barbarastahura.com/SoldiersBrainInjury.pdf

http://www.barbarastahura.com/silentinjurycomeshome.html

And two about her experience with her husband, Ken:

http://www.newsweek.com/id/37348

Recommended reading

It’s After Brain Injury: Telling Your Story

By Barbara Stahura and Susan Schuster.

This workbook guides survivors of brain injury and blast injury through the powerful healing experience of telling their own stories with simple journaling techniques. By writing short journal entries, survivors explore the challenges, losses, changes, emotions, adjustments, stresses, and milestones as they rebuild their lives.

What If My Brother Had Died after His Brain Injury?

By Rachelle Borg-Hinks

What if the brain injury had killed my brother

What would have happened if he had died that night? What if, while pacing in that small private waiting room, the doctor had walked in and told us they did everything they could and he was gone?

My mother probably would have cried, just as she really did that night. My father probably would have tried to attack the doctor in disbelief. Me, I would have run out of that stinking hospital and never looked back. How would we tell his sons that their Dad was dead? That he had run into a concrete wall while driving in a race earlier that Friday night and was so severely brain injured that he died en route to the hospital. He would be gone forever. He wouldn’t be able to teach them how to build a car, how to drive a car, how to do anything that Dads teach their young sons. They would have to grow up without a father, only knowing him from their young mind’s eye and our memories. They would soon forget the sound of his voice and the comfort of his hugs.

Feeling overwhelmed with grief and loss

We would have to arrange for his funeral. How do you do that for a 28-year-old man? How do you look at your brother’s dead body, his soul no longer there? We would have seen him in the emergency room that night and there would have been silence, instead of the beeps as air was forced in and out of his lungs. He would have been lying there, still in his driving suit cut to shreds without his glasses. That would look odd – he needed his glasses to see.

The overwhelming feeling of disbelief and terror would have overtaken my family. Instead of having the warm hand of my brother to hang onto for reassurance, there would only be the coldness of death. My brother no longer there, and yet his body still in front of me. He would have a small trickle of blood running down his face from where his glasses cut him and his face would be swollen from the fracture to his left orbit. He would be an ashen color with disconnected tubes and wires hanging from his lifeless body.

Everything to live for if he survives

I think I would scream, “This cannot be happening! This is my big brother – he is strong and healthy! He has everything to live for, two small boys that need him, damn it!” Even through that, he would still lie there, eyes closed and bruised, not there to help me through my life anymore. Not there to tell me to keep my mouth shut and everything will get better, just as he did when we were kids.

Love of racing

We would have known what killed him – his love of racing and the rush of driving that damn race car. They would come for his body and we would go home without him. We would cry and mourn and make funeral plans. Picking out a casket and planning a service so his friends could come and pay their respects. We would have to pick out dark clothing, as that is what mourning families wear, dark clothing. I don’t think anyone keeps an outfit of dark clothing just in case their brother dies, so I would have to go shopping. That wouldn’t seem right while my brother was all alone in the morgue waiting for the funeral home to come and pick up his battered body for the next phase in the death process.

Surviving the funeral

What would he have liked for a funeral, how would we know? I never asked my brother what he was looking for in a funeral. I just knew he wouldn’t want that elderly lady that played the organ at our great-grandmother’s funeral. I remember how we laughed at how horrible she was. He wouldn’t want that – well maybe he would, it was funny.

I suppose we would have guessed, all wrong, at what he would have liked. He never had any suits, so I think I would have gotten a new driving suit to bury him in – that I know he would have liked for sure. We would have to bring a bag with his clothes to the funeral home and they would dress him for the final time. We would have to find a pair of glasses because he wouldn’t look right without them. Not that anyone looks right in death.

I guess we would have to spend all day at the funeral home, in one of those lines where people come up to you and say how sorry they are and how they can’t believe this happened. We would probably cry and hug everyone, even some people that I know we wouldn’t hug under any other circumstances. Would we have his boys there to say good-bye? I guess we would have to consult a doctor and get an opinion. I would have my daughter there. She loved her uncle very much and was very close to him and his boys. She would have had to see him one last time.

Someone would probably speak about him, and a Reverend would probably pray for him. Maybe we would laugh some; maybe we would just sit in silence. We would only be “the three of us” now where it had always been “the four of us” – Mom, Dad, Chad and me. I guess these things would have been going through my mind.

Crying comes later

We would have to go to a cemetery and bury him – one last good-bye. More praying, I’m sure and lots more crying. People would come to the house, bringing the usual “funeral foods” and everyone would say, “Eat, you have to eat something,” and we would thank them and it would be over. Everyone would go home. The three of us would be left with me being the baby of the family and not at all ready for what was ahead. It would probably take months to get his life closed up and put away, taken care of: money, house, belongings, cars. We would try to stay close to his boys, because we’d love them no less now that their Dad was gone.

Only later would we cry and understand why. No more son, brother, father, uncle, cousin, grandson or friend. No more phone calls at work telling me it was my favorite brother. No more arguing or listening to his obnoxiously loud voice. No more knowing he was just a phone call away to be there for my daughter or me. No more races to watch him drive. Only then would I understand the meaning of all those tears.

Time goes by

Time would go by and we would probably learn to deal with his death, even though it was too soon, even though things like this aren’t supposed to happen. My Mom would go on with her life, pick up eventually and move on without her son. I don’t know how she would do it, because I am always the one that is stuck. My father would also somehow make it through, although I know he would go about it differently. We all have our own ways of dealing with tragedy.

That’s what it would have been, a tragedy – people would whisper it when my dad went to his local haunt for coffee in the mornings, “What a tragedy, lost his only son.” But I am sure he would tell a tale about some race and my brother would live through those stories. Pictures, videos, stories, his boys, his friends – those would be the things we had left of him.

What did happen after his brain injury

This, of course, didn’t happen to our family. My brother didn’t die that night. Sometimes I look at death as “short and sweet” – it comes, you deal with it and life goes on. Nothing lingers other than the good things that eventually show themselves.

I still have my brother here in body, but only sometimes in spirit. His brain injury left him sort of here. He still remembers some of our childhood. He still is there if I need him at the other end of the phone. But as much as it hurts to tell him this, and I never have, it is not the same brother. It’s a new brother, one my therapist has told me dozens of time, if not more, that I have to learn to love now and adjust to.

I wonder sometimes what it would have been like if he had died in his accident. I have a different opinion every time I think about it. His boys are adjusting to their “new” Dad. I think as they near teenage years, some parts of their Dad may be embarrassing as most things are at that age. I don’t want them to be ashamed of their Dad, but I can’t help what has happened to him and I can’t change it. I am still the one telling them those “remember when” stories about their Dad, just like I would have had to do if he died that night instead of being in a very long coma with a severe brain injury.

I guess what I have found is that my brother did die that night in that race car. I last saw him driving away in his pickup truck with his race car trailer in tow. I didn’t say anything out of the ordinary, maybe good luck, maybe not – I don’t remember. My daughter was with him all that day, the last day of his “life”. We just didn’t get to have the funeral and mourn like all the other families that experience this magnitude of loss.

People think we are blessed, and we are in a way. But in some ways we are cursed, my brother, too. We are still “the four of us” and we are going to stay that way, no matter what. Things just change, sometimes it’s bearable and sometimes it’s unbearable. I guess it’s how you choose to look at it.

Recommended reading 

Helping Brothers and Sisters

Brain injury information for families on preparing siblings for hospital visits and helping them understand coma and head injury treatment.

1 Percent Chance – Hope and Miracles after Brain Tumor

By Rich and Bobbi Paine

A brain tumor changes a young man’s life

This story is about a young man of 16. A young man that had the sense of humor of a comedian, was full of one-liners and loved WWII history. A young man that was an honor student, a son, a brother and had the dream of one day becoming a pilot.

This young man’s name is Geoffrey. Geoff lived a rich, full life with a large brain tumor pressing against his brain stem. He was under the care of a neurologist for a neurological “tic” who never performed an MRI. When a second opinion physician ordered “baseline” tests, the tumor was diagnosed and what we once knew as a “normal” life was replaced with a rollercoaster ride of all rides.

How does a family learn to pick up the pieces when a loved one suffers the traumatic events associated with a brain tumor and brain stem strokes due to complications? How does a family watch as the son and brother they knew lie weeks on end in the ICU and then a nursing home? Our child was lying in a persistent vegetative state not able to move any extremity, being fed with a G-tube and breathing with a trachea.

The prognosis was bleak at best. Geoff was given a 1% chance of ever being more than a vegetable and we, as parents, were encouraged to pull his trachea, place him on a DNR and let nature take its course. On numerous occasions, we discussed his funeral arrangements and his last human request of being an organ donor.

Give him a year after the brain surgery to see if he responds

I knew Geoffrey would not want to live as a vegetable, I knew it would devastate him to know that caregivers were feeding, cleaning and taking care of his every need. As a family, we agreed to give Geoffrey the calendar year of 2002 to see his progress before taking the previous medical advice. Daily we went by his bedside, held his hand, washed his face, combed his hair, put cologne on him and talked to him as if he were living with us through our daily activities like normal. We laughed, we joked, we played board games and we lived what was our new “normal” life. Our life that consisted of hospitals, nursing homes, emergency rooms, and ambulance rides. We crawled onto his hospital bed beside him for the closeness we knew he always cherished. And….we cried.

It is an understatement to say tears fell. I would go days on end crying only to regain my composure to walk into his hospital room. There were days I could not go and my husband and our daughter would drop in and always tell him I loved him. Each night before our daughter went to sleep, she prayed that God would send angels to surround Geoffrey. We mourned his loss. We ached for his smile, his laughter, and his voice.

One of the hardest things in addition to seeing our son lying lifeless is to see my husband on bended knee hovering over the hospital bed of his only son holding him in his arms. No words were ever exchanged, just silent tears. How does a family survive?

Recovery starts with new hope and a new future that begins with moving his toes

Then one day, it all changed. Geoffrey started wiggling his toes. One encouragement led to another and months turned into a year with Geoffrey moving his extremities, becoming mentally aware, recovering his memory and responding successfully to rehabilitation.

Today our son is 18, soon to be 19. Even though he uses a wheelchair, he is starting to get his vocalization back, and he has returned to High School this fall. His goal is to graduate with the Class of 2004! He is mentally capable of continuing his education and has plans of college on the horizon. He has his sense of humor, he smiles, and he eats everything by mouth with the successful removal of the G-tube months ago. He no longer has the trachea and is as strong as ever.

Families survive by never giving up hope. They survive by allowing each person to deal with the set of circumstances in their own way. They survive by trusting in the human spirit they know exists in us all. And they survive in knowing Miracles CAN and DO happen.

The best thing is that Geoffrey is very much alive, he has beaten the odds. One huge MIRACLE has the name of Geoffrey. No matter what prognosis may come your way NEVER give up! Geoff is living proof.

My Son’s Recovery after TBI Started with Tic Tac Toe

By Lainie Cohen

A car crash left my son with a traumatic brain injury

When my seventeen-year-old son, Daniel, sustained a severe brain injury in a car crash, we didn’t know that Tic Tac Toe would be an important element to his recovery.

After Daniel emerged from his five week coma, his recovery was slow paced. The physicians weren’t optimistic about his prognosis. They told us that in addition to his right-sided hemiparesis (weakness on the right side of his body), they were concerned about his language skills. They predicted significant impairment in Daniel’s receptive language skills (his ability to understand what was said to him) and his expressive language skills (his ability to express himself either verbally or in writing).

Friends visit and play games after his coma to help his recovery

At the time, Daniel’s friends were regular visitors. They brought in music tapes, hung posters to decorate his hospital room, and told him stories of events from school, hockey and summer camp. And they started playing games with him. The first was Tic Tac Toe. Using a white board that can be written on with markers and wiped clean, they drew a grid and filled in the first X. Then they handed Daniel the marker. He drew a wobbly O in a square beside the X. That game was the first of many.

We’d discuss the placement of each symbol, although we weren’t sure if Daniel could understand. “The X is in the middle. You drew the O in the bottom left corner. Now here’s another X. Uh, oh! Better watch out,” we’d cue him. The first time he deliberately blocked two Xs was very exciting. Soon, Daniel insisted on going first, and then he started winning.

Games and activities are cognitive rehabilitation

Game playing places demands on cognitive, physical and sensory skills. Deficits from an acquired brain injury can limit success. However, games can serve as a wonderful medium for rehabilitation because the “fun factor” promotes repetition. Consider the basic skill sets needed for games: attention and concentration, turn taking and following rules. Even simple card games like War or board games like Snakes and Ladders tap into multiple skills: color differentiation, number recognition, identifying higher and lower numerals, and associating the spatial arrangement of dots on dice with a numeral.

The recreational therapist in the rehabilitation center showed us that teenagers could still have fun after brain injury. Daniel participated with others in cooperative activities like cooking, baking, artwork and music. We couldn’t believe our ears when we first heard him play a harmonica, long before he had the breath control to speak. Daniel was encouraged to try new activities, and as he improved, we watched him engage in wheelchair sports: basketball, hockey and balloon badminton. Not only was he increasing his skills, but also more importantly, he was socializing with his peers.

Make changes that are needed to accommodate a brain injury

Observing Daniel in this environment made us acutely aware how important it is to monitor for low frustration tolerance and fatigue, issues that can be challenging following a brain injury. Modifications were often needed to ensure his safety and enjoyment. When Daniel returned to high school, his Special Education teacher helped him organize a weekly Euchre club at lunchtime. Daniel started carrying around a deck of cards. Years later, on a flight home from a family ski holiday, I watched Daniel use his cards as an icebreaker as he invited his seatmate to join in a game.

Our society emphasizes competition. After a brain injury, it’s important to change the emphasis from winning to participating. Just play the game and have some fun. You’ll be surprised at the results.

Helpful hints for families and friends when visiting after brain injury

• Keep it short and sweet. Focus on having fun. Don’t worry about finishing the game.
• At first, play a familiar game. (You’re tapping into procedural memory.)
• Simplify the rules if needed to increase success. (e.g. for the card game Fish, make sets of two matching numbers instead of four; for board games use one die instead of two dice.)
• Use aids to modify demands, e.g. a plastic cardholder to display the hand of cards, cards with large print numerals.
• Avoid verbal challenges with games featuring a visual-spatial component: Checkers, Connect Four, Chess, and card games (War, Fish, Crazy Eights, Gin, Euchre).
• Choose activities that can be done cooperatively, such as puzzles.
• Some games can be played individually: Solitaire, Rush Hour and many computer and video games.
• Lainie Cohen speaks at ABI conferences and conducts workshops on family-centered care for rehab students and professionals. Visit her website: www.crookedsmile.org if you are interested in learning more.

Coskie Family Brain Injury Survivor Articles

Dixie Fremont-Smith Coskie’s articles by herself and two of her children give readers a special glimpse into the many ways that a traumatic brain injury can touch every single member of a family. Her son, Paul, who had a brain injury, also gives his point of view.

We thank them all for their honesty and their willingness to share their emotions.

IMPACT

By Dixie Fremont-Smith Coskie in Massachusetts

Five years of confusion, helplessness, and torment stung my nerves as I saw familiar terror in my daughter’s eyes. I knew she was about to reveal something horrific. And finally, as the sobs escaped, she told me. Four of her closest friends had just been in a car crash.

They had been returning from a carefree day at the beach when their car lost control, flipped over and rolled down an embankment, which forced three of the teenagers through the windshield. Only the one wearing a seatbelt was not hurt.

She paused to take a long breath and I urgently asked, “How serious is it?”

Her voice cracked, “Not good. I heard James is in a coma.” Breaking away from me, she began to pound the keyboard, instant messaging anyone that she could. As she hysterically typed, I asked questions, “Were they drinking? Speeding? Who was driving?”

A flashback brings back memories and compassion for parents

“I don’t know, Mom,” she said, “But I almost went with them today.” I quickly pulled her close to me. As I did, my mind flashed back to the day when our lives were forever changed. The moment when my thirteen year old son was struck by a car while riding his bicycle. He had not been wearing a helmet and suffered a severe head injury. I thought the wounds were starting to heal. But my daughter’s frightened eyes had ripped through the scars.

Immediately my thoughts shifted to the mother of the injured boy. I didn’t know this woman, but I understood her. I understood her anguish. Her confusion. Her loss. I knew it all too well. I wanted to find this mother and shield her from the horrors of brain injury.

You can’t console a parent in crisis; the numbness that comes with trauma coats everything. And yet, reflecting on the images of my son Paul, lying in a coma, the only noise from the ventilator to aid his labored breathing, I remembered when the chilling realization hit me: even if he did survive, he possibly could be deformed, handicapped or impaired.

I instinctively wanted to phone James’ parents. I wanted them to know they weren’t alone. But knowing the chaos, the protective barrier that comes with crisis, I didn’t. I knew they were trying to grasp the medical realities, demanding answers from the doctors, doing anything they could think to improve their son’s chances of survival. I knew they were inconsolable because I was inconsolable then, too. There is a powerlessness you feel when you see the child you brought into the world lying defenseless on a hospital table.

From last rites to a new life for our son

My husband, Steven, and I stayed by our son’s bed side in shifts. One of us at the hospital, the other at home with our son’s six siblings, allowing them to cry, and to ask questions, giving them whatever information we could in an effort to ease their grief. Occasionally we even timidly talked about life and death. When reality overwhelmed us, we simply prayed for Paul to live, to heal, and not to have any lasting repercussions.

Two months after our son’s crash, Paul’s eyes finally blinked open. He could not walk or talk or even remember who he was. With help from therapists, his family, and his self-determination and perseverance surfacing, he fought through days, months and years of rigorous physical, occupational and speech therapies. Today his efforts have paid off. My son Paul walks off-balance, but it is a blessing he is walking at all. His voice is slow and monotone, but the fact that he can respond and speak is amazing. Cognitively, his brain may move slightly slower, but it is beyond belief that he interacts with maturity, humor, and intellect. The left side of his body shakes due to ataxia, making it hard for him to accomplish simple tasks we all take for granted, but the reality that he is not paralyzed is miraculous. Paul has been on the honor roll and graduated from high school. He works full time, and his hobbies include paintball, golf and even bike riding. Five years after our son was given last rites, we still see slight, incremental improvements, all of which have redefined what hope means to us.

Making a connection with James’ mom

I was told James had awoken. His mind was in a haze, but he was gaining more movement with his limbs. To my surprise, his mother phoned me – searching for guidance, reaching for support, telling me the intensive care administrators were suggesting sending her son to a rehabilitation hospital. Tears brimmed over and I tried to compose myself. I didn’t know this woman, but our connection was real. I felt the relief in her voice that her son was alive, but I also sensed her fear, not knowing the future and the quality of life that James would lead.

Gripping the phone I said, “Connie, I know your uncertainty, but this is good news The doctors have stabilized your son, now a rehabilitation hospital can begin to get his body moving again.”

Hesitantly, she responded, “What if he remains in a catatonic state?”

Knowing she was fragile and on the brink of collapse, I spoke softly, reassuringly, “You’re moving forward to help him to heal, there’s hope.”

Emotions flood back to when it was my child

Putting the phone down, I felt hidden emotions and images surfacing. Everything came back at once. Cradling my son’s body on the cold dark pavement. The blaring ambulance, the helicopter ride, and the doctors stating, “Paul may not survive the hour or the next twenty four.” I experienced the same fear I felt when I watched my child hooked up to tubes, wires and a ventilator. And suddenly, my body began to tremble as I recalled the horror we faced whether to take Paul off life-support. And I remembered with shock, the uncertainty of when we eventually arrived at the rehabilitation hospital, seeing children disabled from birth, or accidents- and I remembered the physical therapy rooms, and the grueling days and nights fighting to gain back what was taken from Paul on that fateful day of the crash.

These parents didn’t know the up hill journey and repercussions they would be facing, but I did. I wanted to spare them all of the grief my husband and I had gone through, but I had to keep reminding myself that there is no way to accelerate or soften the healing process. I wondered how they would cope, knowing the despair and agony they would witness. I wondered if they had it in them, to not give up.

The other piece of the equation, of course, is how would their son cope? We watched as my son Paul began to regain use of his limbs, and basic cognitive judgment skills. We encouraged him as he learned to sit up, roll over and to take steps. All the while waiting for the day he’d try to form thoughts, to process information, to speak. We were beside him reaffirming that he would get better as his brain sparked, sputtered, and played a cruel game of hide and seek.

A familiar story of hope and sorrow

Months later, another phone call from James’ mother revealed the same type of devastation I too had faced. Her son had maxed out his therapy benefits and her insurance company would no longer pay for therapies at the rehabilitation hospital. A decision had to be made whether to bring her son home, far from fully recovered, or send him to a residential educational setting.

Again her sorrow was evident as she whispered, “I know we haven’t met, but I have heard bits and pieces about your son’s recovery…what should I do How can I best help my son?”

I said, “Every head injury and recovery is unique.” I simply told her the decision boiled down to this: A) Bring him to a nursing home, and there is little chance he will advance in his recovery. B) Bring him home, be his sole caregiver, and fight through the special education bureaucracy at his local school. Or, C) Admit him to a boarding school or program with expertise in head injury rehabilitation.

She was shocked when I again suggested the latter. But knowing the realities of bringing a brain injured child home, I somehow wanted to make sure she was making informed decisions that could best help her son in his recovery process.

Mentioning my experience, I told her we interviewed other facilities and spent hours with school administrators. Our instinct was to return our son to public school, with special assistance. At that point, our son was struggling just to remember “2+2 = 4.” We needed to start a special program to help Paul relearn simple math, history, and English in a quiet room. We searched for a personal aide to help reinforce his studies and to help him physically move through the crowded hallways. Due to Paul’s lack of concentration and double vision, Paul listened to books on tape. A computer helped with his lack of motor skills and gave him a tool to write. We blocked out time on his school schedule so he could work with physical, occupational and speech therapists. And, his afternoons were spent, working with weights, cognitive workbooks, and swimming in the therapeutic pool, struggling to get better at a rehabilitation facility twenty minutes from our home.

Connie hesitantly said, “I want to bring my son home, but I’m not sure if I can cope with all the changes or what I’m up against.”

Holding on to hope

Back then, to look at Paul some would have thought my son should be attending one of those schools for the physically and mentally challenged. Stubbornly my family saw him as challenged, but not handicapped. We wanted to see beyond his mangled body and mind; hoping for endless possibilities. Never having faced such a situation before, we stuck to faith – a faith adjusted to the situation at hand. We sacrificed our own needs and wants, wanting to surround Paul with the love he had always known. Paul sacrificed and endured too. He did not slip backward or plateau; he fought–like an athlete training for the Olympics.

Surprisingly, Paul recovered enough to be reintegrated into “regular class rooms” in a wheelchair. Not all head injury victims are as lucky, and I did not want to give this mother false expectations. But I shared with her that after months and years of heartache and struggle, Paul amazed his family, his teachers and fellow students when he walked to receive his High School diploma, taking steps doctors thought were not possible. Whistles, screams, tears, a standing ovation and Paul’s smile had overpowered the room. Reflecting on this, I realized what to say to this mother; I knew I didn’t have all the answers. I could only tell her from my experience. If she chose to bring her son home, be prepared for mood swings, anger, confusion, and the loss of independence. There would be a lot of driving to and from therapy sessions. And to be prepared that her marriage and her other children’s needs would be placed on a back burner. She needed to know she probably would have late dinners, piles of undone laundry, and the gnawing gut feeling that no matter how hard she kept trying to get him better, it would feel like it was never enough. Then I said to this mother, whose grief and sorrow I connected with so tragically, “The important thing is this – choose what you think you can handle, and where you think your son can best recover – and then don’t give up. Never, ever, ever give up. Pray and hope.” I added, “For hope is what keeps the spirit alive and our souls in motion.”

 Split Second

Dixie Fremont-Smith Coskie in Massachusetts

The doctors were right. My son Paul nearly died.

And today he is not the same person he was before the accident. Nor am I.

I prefer to be alone. To think and ponder. To try to make sense of life, death, suffering.

I have no patience for trivial things, conversations, most people.

~ ~ ~

I prefer to keep a dialogue with God.

I somehow, still believe – even through our harrowing experience, and even through my anger and doubts – that He is infinitely there. In everything. In all His power, divinity, simplicity.

I seek to hear His whispers through the swaying of the trees, and through the shapes and colors of the clouds, which drift through a storm. A rain drop, a teardrop.

I look for Him in others’ eyes, a neighbor’s gesture, my husband’s embrace, my children’s

laughter.

I seek Him everywhere.

I have found no answers, but at times, though it is rare, I feel His presence, His comfort, His unconditional love.

And though I question and sometimes find it hard to greet my days, what gives me purpose and meaning is seeking His will.

~ ~ ~

As I write in my journal, I realize five years have passed since Paul’s bike and the SUV crashed.

My husband and I are still unable to fully verbalize our grief, yet, we are unified in our

experience, and our love.

Sunrises are filled with thanksgiving – anticipating the silhouettes of our eight children.

Especially the curve of Paul’s nose, his bushy eyebrows, and his lips twisted upwards.

I often can’t wait to marvel at a moonlit night, for the circle to sink behind the hills, to count the stars, and to contemplate and question the universe.

~ ~ ~

Paul continues to walk a little off balance. To me though, it is a blessing he is walking at all.

His voice is slow and monotone. Yet, the fact that he speaks and forms thoughts blows my mind away. Cognitively, Paul may be slightly slower to respond to a question or to process information. But, it is amazing that he responds with wisdom, maturity, humor and intelligence.

The left side of his body shakes and has tremors, which makes it hard for him to do the simplest of tasks. But the reality that he perseveres and is not paralyzed is miraculous.

Seeing Paul’s progress over the years keeps me in denial – thinking, hoping, and believing that my son will fully recover. Day by day, cell by cell, neuron by neuron.

~ ~ ~

The biggest difference, which I see or experience, is not really with Paul.

He will always be my son. My hero. My strength.

He lives!

He survived the impact of the heavy metal. Two months in a coma, a broken jaw, a

collapsed lung, a traumatic head injury, shearing of the brain, and weeks, months and years of rehabilitation.

The startling differences I witness daily are in how others perceive and treat him.

I’m only reminded of my son’s handicaps, when I see how people stare as he walks down a crowded sidewalk.

Or if they mistakenly interact with him, I internalize the questioning in their eyes – their impatience at having to wait for his speech to catch up to his thoughts.

~ ~ ~

They put up walls, barriers.

Paul has become painfully invisible to his friends.

The phone never rings.

His teenage years lost. Not normal.

Filled with the absence of the sensuous smell of a pretty girl’s perfume.

Never hanging with the guys.

His independence taken away.

No driver’s license. No tunes on the radio in pursuit of adolescent adventures.

~ ~ ~

Within a split second years ago, life as he knew it, changed. Forever.

Despite Paul’s determination, humor and intellect, my heart seeps with sorrow.

I see the loneliness in my son’s struggles and half smile.

What keeps me focused and hoping comes from the other side of that smile.

The one that lasts for hours when he greets his days; ready to conquer.

The other side of that smile that lingers, knowing something that you and I do not.

“Perhaps, the angels’ wings do make a noise?”

 A Moment In Time

By Brianna Coskie, age 17, 2004

There have been times in my life when words don’t come easily, and it’s hard to verbally express my feelings, thoughts, or concerns. I communicate best through my artwork, most particularly through drawing and painting. When something comes to heart, it’s hard to put in words, but my fingers and hands urge me to find another way to express those emotions for which I cannot speak. This is why I turn to drawing; it is my way of telling a story and letting out my emotions for all to see.

Growing up with siblings always around, there was a certain joy in knowing I always had someone to lean on. On September 6, 2001, my family and I went through a traumatic and emotional time in our lives. My brother, Paul, was severely struck by a car while riding his bike. He was only thirteen at the time, and was not wearing a helmet. He suffered a severe brain injury that left him in a coma for two months and in a rehabilitation hospital for nearly five. He had to relearn everyday activities that we all take for granted such as feeding ourselves, speaking and walking. During this time my emotions got bottled up inside because the ones I looked to lean on, were in a need of a shoulder themselves. The only way I was able to begin expressing those feelings and to begin coping with the situation was through illustration.

The piece of art that I have selected represents the accident, struggle, and pain that my family endured during this time. As I began to tell my brother’s story in mosaic form, my anxiety slowly began to subside. I worked on this piece for over a summer, spending a particularly long time on the twisted wreckage of the bike, perhaps blaming the bike for all my pain. Each detail let me express an emotion I felt, as the bike represented my anger. Every individual drawing is symbolic to me and may allow others to see pieces of their own lives in it and the emotions they hide within. There are hidden drawings in this piece, such as a wheelchair, walker and a teardrop. The reason they are hidden is because my emotions were kept deep inside, masked from people, not easily seen. It was the faux smile I showed everyone, even though all I had inside were tears that could only be seen when you took a better look.

When my hands stopped moving and my heart fell back into place, I looked at what I did. I created an art piece of raw emotion. Among all the details of grief and pain it felt as though the painting lacked a moral. I felt compelled to superimpose the concrete image of the helicopter on top of all the others to show the truth behind the world, moving as it does. The helicopter’s speed and grace loaded with medical equipment was vital to my brother’s survival. It was representative of all the help and ultimate rescue of my brother, the symbol of life and hope that was brought to the artwork and back into my family’s hearts.

Working on this project allowed me to create a conflicting composition that is simultaneously visually appealing and disturbing. Bringing to life the images, colors, and different sections of this project were very cathartic for me. I hope that all my work will reach out and have a healing effect or bring about a change in people who may experience its deeper meaning.

This art piece allowed very different people to share a horrible moment in time that changed my life and my brother’s life forever. It also gives others hope and inspiration to believe in miracles, as my brother miraculously recovers, day by day from his injuries.

 After Thoughts – Brianna

By Dixie Fremont-Smith Coskie in Massachusetts

As her mother, I have always been in awe as to the way my Brianna sees life through her heart. How she interprets a stranger’s glance or a tree bending in the wind, and through her art and gentle sensitive ways, how her ability and talent can create life, and feelings upon a canvas.

Brianna was fifteen during Paul’s first year of recovery. Her carefree life shattered.

Panic attacks and nightmares followed. She hid her fears by becoming quiet, by taking care of those around her, by releasing her grief through oils, pen and ink.

Our family watched how Brianna’s heart shook as her brush was in motion. How her tears mixed with the paints. We saw her silenced emotions scream with images within her artwork- they portrayed Paul’s accident.

His crash had hit her hard.

I finally saw a healing process beginning to surface. Her artwork raw, real and releasing.

Brianna will leave her mark on the world through her inspirations, adventurous spirit, and funny sense of humor. She will stay true to being who she is, a caring, giving, hopeful, creative individual who sees beauty in the most tragic of circumstances.

 My Big Brother

By Anna-Theresa Coskie, age 11, 2004

There are many people in my life that I could consider a hero, but if I had to choose just one, it would be my big brother, Paul. I have eight kids in my family, but I look up to Paul most because he has been through so much and never gave up. He has taught me many things from how to tie my shoes to some of life’s greatest lessons.

When I was five, my brother was there teaching me how to blow a bubble with bubble gum. When I was six Paul was the one who took the training wheels off my bike and taught me how to ride it. As I got older, Paul was there to teach me many things, help me with my homework, or to simply hang out with me. I love Paul for that; everyday he had something new to teach me or a new game to play. He was the best big brother anyone could ever have.

On September 6, 2001 my brother got into a serious bicycle accident on his way to his friend’s house. Since his friend lived right down the street, Paul decided not to wear his helmet. He didn’t know that in the middle of his ride his helmet could have made his injuries less serious.

Paul was in a deep coma, and was unable to breathe on his own, so doctors connected him to a machine that breathed for him. Paul had a collapsed lung and suffered from a serious brain injury. He lay lifeless in the Intensive Care Unit with wires coming from every direction. We didn’t think he would live, but Paul decided he could not leave our gigantic family.

After two months of waiting, hoping, and praying, Paul awoke from his coma and moved to a rehabilitation hospital in Boston to begin physical therapy, occupational therapy, and speech therapy. I look up to Paul more now for hanging in there for so long. From this point on I knew everything would be all right and Paul would soon be home with the rest of my family.

When Paul could be moved by wheelchair, he came home on the weekends. He suffered from short-term memory loss; it was part of his brain injury. I was so happy Paul could come home I didn’t care that every five minutes I heard, “Can I call Sean?” Soon Paul was walking with a walker and could return home for good!

Paul returned to his eighth grade classes for half days in January. He would go to school in the mornings and go to therapies in the afternoon. After missing about five and a half months of school, he still got honors on his next report card! Intelligence is something I want in a hero and he has it. In June 2001, Paul graduated the eighth grade with the rest of his friends and put the whole auditorium in tears. He gave a marvelous speech that touched the hearts of everybody. I don’t think I could write a speech that beautiful, or have the courage to go on stage in front of family members of classmates and recite the speech from memory. I just want to be more and more like him everyday.

One of the other fantastic qualities Paul has is his sense of humor. He always finds the good in a bad situation when all anyone can do is focus on the bad. Paul always seems to make me laugh with one of his jokes when I am upset. He always has the best jokes to share and funny stories to tell. I have none of that, and I want to. I wish I could be happy and cheerful all the time like Paul is, but it’s hard sometimes.

Paul has been through so much in his life, and people can be mean sometimes, but he keeps on going not caring what people think of him. As a sixth grade girl, it’s hard for me to not care what people think, I want everyone to like me. So maybe I spend more time in front of the mirror, but Paul could roll out of bed and go to school just like that and not even care. If someone makes a rude comment, he’ll just walk away, but me, I can’t seem to let it go. I strive to be like Paul everyday of my life, and I think I always will.

Paul has overcome many things in the last couple years, and so have I. From Paul I learned things that people learn in a lifetime. I want to thank Paul for that, for being my teacher, someone that I can look up to, and the best big brother in the world. I hope he knows it!

 After Thoughts – Anna-Theresa

By Dixie Fremont-Smith Coskie

I will never forget the panicked look on Anna-Theresa’s face during the period of time when I needed to be with my son Paul at the rehabilitation hospital. She was just nine.

Her small arms desperately not wanting me to leave, clinging, scratching, grabbing my waist, arms or neck. Her eyes crying fearful fretful tears. Her sobs echoing in my heart.

So many tormented days.

Up until Paul’s accident, her biggest concern was whether she was going to have a peanut butter sandwich or swing on a swing. She was devastated. Silent, except for the never- ending weeping.

Anna-Theresa had always clung a little harder, wanting reassurance that her brother who she loved and idolized, would be o.k. – would live.

She kept tight to her older siblings’ comfort, growing in insight, wisdom and sensitivity.

She began to pray.

There is a dimension to Anna-Theresa that is deep, angelic, sweet and sincere. As she matures, I see the subtle scars left behind; the fear that lingers. Yet, what shines is her cheerful smile, her intuitive eyes and mind, and loving unselfish heart. Her love for family, her brother, everlasting. Real. 

Paul’s Point Of View

By Paul Coskie, age 16, 2004 

To this day I still believe the accident that occurred on September 6, 2001 has an effect on my attitude and views on life. It definitely proved to me that life is delicate. Though I have seen some hard times, everyone who helped me through it was pleasant and really helped me.

The first stages of my consciousness I do not remember very well. I do remember feeling that most everyone now thought of me as lesser of a person. People coming in and talking to me as if I were a baby really got me down for a while. My best friend who had awakened me from my coma was always a great motivational support. He never doubted that I was stronger than that car and I could come out of that haze of injury just fine, that’s why Thomas my cousin was still talking to me and telling me jokes when I was fully unconscious. Not everyone can say that a scab joke saved his or her life; I woke up laughing.

Coming back to my hometown was very difficult after I was in the hospital for so long. Everyone was nice to me and all, friendly, but I could easily see past that. After I got used to being around so many people again I could tell most of my peers were just almost mocking me by being so friendly. Because I was feeling this, I lost a lot of trust in them, and as they realized I was not as gullible as I was in the past, a lot of them lost interest in being around me. I can say I was never the most popular person before this anyway, and I am glad to have the few but real friends that stood by me.

As far as my education I never really felt that people had given up on that. I also never forgot that an education was essential for my larger goals in life. My high school accommodated the classes that needed to be, to help me. I still believe that an education is vital to the life of ease I hope to one day live.

I do not believe the accident has changed me too much. It surely has changed the way people look at me. There are still some people that treat me differently than they did before my accident. It may be lack of belief that I will ever be the same, or maybe it is my self-confidence that simply scares them away.