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Remembering To Remember…by Jonathan Davies

I always have dreams during my dark hours.  What am I trying to remember?  When my dark hours end, the light comes and pushes the dreams away. 

Sometimes the dreams are hazy; sometimes they are vivid, surreal events I awake from full of fear and anxiety.  Although they are not the reality of the awake-world, they have one hell of an effect on the tales I tell and the ability to have my listeners believe them to be true.  Often my dreams are so realistic even I cannot determine between truth and fiction.  The dreams of my dark hours create memories, memories create beliefs; these beliefs affect how I react to people and events.

So much was lost when the uninvited, crippling trespasser made his way into my life.  It is nearly impossible to express the true idea, visions and horrors that are constantly brewing in what is left of this mind of mine.  I have gone to many different doctors of all types in hopes of finding a clear pathway through the jungles of my forgotten past, foggy present and, what often seems to be, bleak future.  Doctors and therapists offer words of advice, suggestions on how to cope with the losses, encouragement for coming so far after such a severe injury, no one talks about recovery anymore.  Now we talk about managing symptoms and coping.

 It has been fifteen years since the accident, since the trespasser, traumatic brain injury, came abruptly changing my life. The injury was terrible, the medical intervention was miraculous and my body did a great job getting back on its feet with months of rehabilitation.  But, today, like every day, is an up-hill battle through a maze of pretty scary stuff.  The memory does not work, I have trouble keeping a schedule straight, I cannot recall even happy events from the day before without reminders.  Sometimes I just get tired of it all.

In my mind traumatic brain injury, referred to as TBI, does not take into account that I need time outside of its grasp.  I need time to have someone help me sort out the realities.  I need time to let go of these dream memories that create frightening, fear-filled thoughts which seem like they must have happened.  Whether I am sleeping or awake, chances are there will be no images for me to fall back on and recall the reality of experiences that have occurred.   Facts get mixed up with dreams, then dreams get mixed up with fabrications I have put together based on the emotions evoked when I awaken in a cold sweat.

Living with Traumatic Brain Injury, after you get through the coma, the hospitals, the rehab and the therapy, is a never-ending journey of looking for a road that will take you somewhere you can feel wanted, safe and have life with purpose.  This last part is the part that is not usually written about in newspapers.  No one wants to hear about the heartbreaks and pain that continue long after the happiness of being discharged from the hospital and getting home again.

The information about my accident, the medical intervention, my rehabilitation and my immediate re-entry into home and community life is from the story telling of family members and copies of medical reports over the past fifteen years of our time together.  I guess they are all telling me the truth.  I have very little recollection of my life between my junior year at Vermont Academy until a few years after my first year at Springfield College.  I remember some names of friends.   It is maddening to hear the stories of my life from everyone but myself.  How could I have jumped from a plane and soared through the sky without ever remembering?   How could my Grandpa, my fishing buddy, have died on my twentieth birthday and I don’t recall any pangs of sadness?   What else happened that I will never imagine?

Like the majority of survivors of traumatic brain injury (TBI), I was involved in a motor vehicle accident when I was a young man.  After my first year of college, I was riding my prized Honda motorcycle on a beautiful July day in the small town where I lived with my parents.  Speeding along the country road, the sun on my back, I never saw the car making a left hand turn crossing my path.  I hit the car as it started to turn into my path and flew sixty five feet through the air.  I don’t remember any of this but I am told this is what happened.  I was flown to the local trauma center after being treated at the scene by the volunteer ambulance team.  I was in intensive care, not responding to anything except the sensation of choking during times I was suctioned to keep my airway clear.  Then I would choke so hard I would lift my two hundred ten pound, six foot two inch body right off the bed as I gagged for air.  Otherwise, I ‘slept’ as a machine did my breathing for me.

The recovery from this brain injury took everything I had.  My brain required energy to keep functioning and healing, I dropped forty pounds in a matter of a few weeks and only after more than a month did I open my eyes and begin coming out of the deep coma state.  I was fed by a tube surgically inserted into my stomach and my breathing was made easier with a tracheotomy tube inserted through my neck.  Most of us survivors have the wounds left from this time of medical intervention.  We compare scars to see who had the better surgeon.

In my damaged mind I am left to accept a life tangled with stories of how miraculous my recovery has been while I will never have any recollection of the pain I caused myself and my family.  The mental pain goes on: the ‘memories’ put into my head by the stories I am told by other, the things doctors tell me each time I go through another examination, and the news articles I read about someone else ‘recovering’ from TBI.  It is so strange not to know what is reality and what is fantasy.  Did I have this experience I am reading about?  Did people tell the truth about what happened?

Like many of those with serious brain trauma, I ended up with memory problems and seizures.  We all share some level of an array of symptoms of dementia, depending on the areas of the brain injured: cognitive problems, irritability, impulsivity, insomnia, fatigue, and apathy.  Many of us struggle with depression and anxiety, some with compulsive disorders, and regretfully, some have suicidal thoughts and attempts.  As life goes on I realize more and more how much my impairment has affected my life.  I worry about what it will be like in years to come.

Most traumatic brain injuries occur in children between the ages of 0 – 4 years, and then youth between the ages of 15 and 19 years.  Males are more likely to sustain TBI than females.  Certain military duties increase the likelihood of TBI.  The brain is most often injured when an outside force causes the brain to move inside the skull; or the brain can be injured when the skull itself is broken and the brain directly hurt.  The brain moves around inside the skull like Jello, except is attached in places.  Tearing, bruising, bleeding and pressure from swelling affect the brain in different areas.  Depending on the degree of damage and the areas damaged, the survivor will experience numerous life-long deficits which may never heal fully.  Improvement in condition occurs for many years after the brain injury, but recovery in the sense of being like ‘before the injury’ is not going to happen.

Each year 90,000 American life through injuries that leave them permanently disabled with brain injury; 50,000 die from brain injury each year.  Today, 5.3 million Americans face challenges resulting from brain injury.   The numbers of Americans with brain injury are increasing with the Global War on Terrorism as our soldiers return home to begin life anew with the effects of brain injuries sustained in battle.

An In Institute of Medicine report edited by Eden and Stevens stated in 2006: …many people with TBI experience persistent, lifelong disabilities.  For these individuals, and their caregivers, finding needed services is, far too often, an overwhelming logistical, financial and psychological challenge.  Individuals with TBI-related disabilities, their family members, and caregivers report substantial problems in getting basic services, including housing, vocational services, neurobehavioral services, transportation, and respite for caregivers.  Yet efforts to address these issues are stymied by inadequate data systems, insufficient resources, and a lack of coordination.  TBI services are rarely coordinated across programs except in some service sites.  Furthermore, in most states, there is no single entry point into TBI systems of care.

Now in order to keep going, I need a medical-alert pill dispenser to remind me to take medication to stop my seizures, I take pills to help me sleep without the dark, overpowering dreams, and, infrequently, I need antidepressants to get me over the rough times.  I write poetry and prose to keep myself thinking and using my brain.   I love to get out in nature.   I enjoy playing black jack at the casino.  And, I look forward to getting a part-time job as soon as possible.  Like everyone else, people with TBI want to be included in life.  Many of us need help with transportation and help organizing and remembering.  But we do remember.  We remember people who are helpful, caring, take time to be with us.  We remember how it feels to be appreciated.e TBI survivors do have problems that change our lives immensely and we know that we must be difficult to be with.  Our friends fall away; we cannot keep up with their lifestyles.   We have problems remembering day-to-day events and appointments, even new faces.  Solving new problems takes us longer.  We get upset easily and are prone to angry outbursts, but we cool down quickly and often do not remember what we said or did.  These changes in behavior and our difficulty in reading what others mean or need can cause us problems in relating to people.   And, we need support to get out into a meaningful job or volunteer position that gives us a reason to get up and out each day.

Professionals, survivors, and family members are trying to piece together services to support those of us who live with TBI.   A full continuum of care addressing all the needs of a person with TBI is difficult to put together.   Yet, brain injuries are the most prevalent reason for emergency room visits.  More and more people are living after sustaining very serious brain injuries.  Getting people through the first weeks following their injuries is not enough.  Having acute rehabilitation available is a must.  But, getting people through the years of living with their injuries with dignity and care is what is needed.

Remembering is difficult for TBI survivors.  We all joke about our memories, then we tell each other about our new watches with alarms, new medication reminders, and talk about the food and weather.  We remember the ‘normies’ who used to be our friends.   Then we try to remember what we did at our last support group meeting.   Remembering to remember.  Remembering we count.  Reminding people to remember.   There is no full recovery from a serious brain injury.  There is life after the injury.  Sometimes it is just as well not to remember the things we have lost.

I still remember how it felt to fly through the wind on my bike and motorcycle.  I have nights when the dark thoughts do not catch up with me.  I try to remember there may be more for me in the future.  I try to keep trying.  Maybe in the future each person with TBI will have an opportunity to live a life that is meaningful and rewarding.  Maybe someday policy makers and the public will understand what it is to live with what is left after the crippling trespasser has come.

Resources:

Barriers and Recommendations, Addressing the Challenge of Brain Injury in America. 2008

 Washington, DC: Brain Injury Consensus Conference,  November 02 2007.  1-6. 6 p.

“Dementia in Head Injury.”  Web MD  5 May 2008.   http://www.webmd.com/mental-health/dementia-headinjury

“Statistics from Center for Disease Control and Prevention.”  Brain Injury Association of the USA.

2 May 2008.  www.biausa.org