Brain Injury Blog by Jessica Felix Jager, MSW

July 22, 2011

Embracing Community and Relationships after a Traumatic Brain Injury

I attended an educational conference once where the speaker spoke on individuals with disabilities and how difficult it can be for them to integrate into society and build community. He then went on to give an example on how acquired disabilities can make the task of building community even more difficult due to the individual remembering how they once interacted in community and how they were accepted in society prior to their acquired disability. I couldn’t help but think to myself, how my current community would change if suddenly I found myself disabled in some form. The reality to this realization was a bit disturbing. It was then that I believe I received but a small glimpse of how one that has survived a Traumatic Brain Injury (TBI) must feel when dealing with the reality of re-entering community and society. For many the community has not changed, but the survivor has and so the process becomes uncharted territory in many ways.

It is true that remembering how you once were, while trying to embrace who you are as a result of a Traumatic Brain Injury (TBI) can be a difficult process, however, it can produce powerful and beautiful results in the sense that new opportunities, experiences and ways to help others may be birthed from the hardship that was endured. Before one can experience the positive results of overcoming and stepping out, isolation must be conquered so that community can once again be embraced. Many individuals that have experienced a TBI initially struggle with isolation and getting back into the community.  For some it is an ongoing struggle. Although there are many reasons one with a TBI may find themselves more isolated post the TBI than prior, the purpose of this article is not to identify the reasons one may find themselves isolated, but rather to address why isolation is detrimental to all despite its genesis.

In the article, Social Isolation: A Modern Plague, Stephen Ilardi identifies that 25% of Americans have reported having no meaningful social support at all and that over half of all Americans report having no close confidants or friends outside of their immediate family (Ilardi, 2009). Ilardi’s article highlights this social deficit across humanity, and how this is a problem for all individuals with or without a disability. The deficit in undeniable and the problem of social isolation only increases with those that suffer from a disability. Ilardi identifies increased vulnerability to mental illness as a result of social isolation (2009). Social isolation also is a major risk factor for the onset of major depression and increases vulnerability to various forms of addiction (Ilardi, 2009).

James House points out in his article, Social Isolation Kills, But How and Why, that social isolation has been shown repeatedly to prospectively predict mortality and serious morbidity both in general population samples and in individuals with established morbidity, especially coronary heart disease (2009). The magnitude of risk associated with social isolation is comparable with that of cigarette smoking and other major biomedical and psychosocial risk factors (House, 2009). 

Indeed the need for community is becoming more prevalent. To counter social isolation, one must enter into community with others. Jean Vanier in her book Community and Growth emphasizes that each of us needs to feel appreciated and understood; we all need help. Without dependence upon one another, we cannot grow and develop the capacity of joy (2001). Thomas Reynolds author of Vulnerable Communion passionately states, wholeness is not the property of the individual, a quality of self-sufficiency. It is a relational term; we are not complete persons without each other. What is “mine” is really “ours.” My own joy, my own good, is connected with that of others. The common good of a community is thus not an external constraint imposed on me, but a horizon that empowers the flourishing of relationships in which I can flourish (2008). We need each other. We need community. We are social beings made to interact with one another and work together as one.

The Social Work Dictionary better defines community, as a group of individuals or families that share certain values, services, institutions, interests, or geographic proximity (Barker, 2003). Everyone has values, interests, or is part of an institution of some sort such as a church, school, support group, club and so on. Therefore, everyone has the capability of being further incorporated into a community setting if they so chose to be. Granted some are limited in their resources, but these limits can become another means of community if one allows the limitation to not be an obstacle. For example, if one cannot drive due to the Traumatic Brain Injury they endured which caused their vision to be compromised, and say they wanted to attend a weekly bible study and church service, then he or she can get connected with members that are willing to drive them each week, thus creating a new opportunity for relationship building. A lack of resources or limitations essentially can produce opportunities to problem solve and creatively build new community. Another good example of overcoming the odds is focusing on developing your current interests. If prior to surviving a TBI the individual may have enjoyed horse back riding and working out on the farm, but since the TBI now enjoys reading and won’t go near a horse, then the individual can join a book club and build community on the new found passion. 

Each of us make up the community around us to some extent, therefore each of us play a role in including others and drawing them in. It is evident that social isolation is detrimental and damaging to ones physical, mental and emotional health. If we truly want optimal recovery and an overall better quality of life for our loved one with a Traumatic Brain Injury then we must be advocates of inclusion and do all we can to encourage community and social interactions. The Brain Injury Association of American, in their published guide, The Essential Brain Injury Guide, defines inclusion as the incorporation and welcome of the individual into the community regardless of a disability (2007). By bringing individuals into community with others it allows the Community to play a role in the recovery and normalizing process. We cannot change behavior through a mere technique or a law, change occurs as a result of relationship.

References

References

Barker, R.L. (2003). The Social Work Dictionary (5^th ed). Baltimore, MD: Port City

 Press.

 Brain Injury Association of America (2007). The Essential Brain Injury Guide (4^th ed).

 Ypsilanti, MI: Rainbow Rehabilitation Centers, Inc.

 House, J.S. (2001) Social isolation kills, but how and why? Psychomatic Medicine, 63,

 273-274. Retrieved June 28, 2011, form

 http://www.psychosomaticmedicine.org/content/63/2/273.short 

 Ilardi, S. (2009). Social Isolation: A modern plague. Retrieved June 28, 2011 from

 http://www.psychologytoday.com/print/30862

 Reynolds, T.E. (2008). Vulnerable communion: A theology of disability and hospitality.

 Grand Rapids, MI: Brazos Press.

 Vanier, J. (2001). Community and growth. Mahwah, NJ: Paulist Press.

 By Jeff Therrien

I began wondering why I need to be so careful with what I say. I forever question myself strongly; this often takes over my thought process. I am very fortunate to believe that everything happens for a reason. I am also very fortunate to have a comedic relationship with the spirit within. I came to a wild discovery while explaining all of this to a dear friend of mine. Early on I convinced myself that my voice no longer belonged entirely to me. Now the question is; when do I take it back?

I just say it!

What I am referring to is the ‘no-filter’ clause which is a very common symptom with most forms of brain trauma. This means when a thought comes to mind, it is spoken before given the chance to consider whether or not it should be. The following exercise may clarify. Think of someone you may despise. What is the first thought that comes to mind? Now imagine you said that to this person. I have walked away from several conversations only to look back and wonder why on earth I said what I said. This has happened with family members, friends, clients, and of course, prospective clients. I will admit I have left many conversations feeling cold. Fortunately for me I know many forgiving souls.

Letting go of my voice was not a justification. It was more about self forgiveness and realizing “that wasn’t me.” Every other alternative I came up with was an attempt to control something that was out of my hands. Some may laugh when I mention the ‘no-filter clause,’ and I can assure you some may even envy me. Imagine for one moment letting it all out, all the things you’ve wanted to say to this person or that person over the years with no control. This is one of the tougher symptoms of brain trauma. Even those who understand this may have been hurt.

I’ve become much better over time, yet sometimes I slip and throw another dagger. I’ve learned in moments of fatigue or over confidence, my new filter may be out to lunch. What can I say? I often have trouble believing my brain is still healing, until I look back at moments that are far out of character.

I apologize to just about everyone I have had a conversation with over the past two years, as I’m sure a dagger of brutal honesty was thrown your way. I hope some good came of all this, as I still need to believe that “It wasn’t me.”

The lesson: letting go.

By Mark Palmer

One bad choice

One day when I was 15 years old I lied to my family about where I was going, got in a car with an inexperienced driver, headed for Detroit, and was broadsided by a city bus.  I suffered a traumatic brain injury (TBI) caused by a depressed skull fracture.  I went into a coma.  The doctors who performed emergency surgery informed my parents that I was not likely to survive the operation.  If I did, I was not likely to regain consciousness.  If I regained consciousness, they expected me to be severely handicapped. 

Six weeks later when we were heading home—my father and I in the front seat, my mother leaning forward from the back to protect me with her arms every time we went through an intersection—we were celebrating. Through the skill of surgeons, the care of nursing staff, and the prayers of scores of family, friends, and even paper route customers, we had beaten the odds.  I was a living miracle. 

Although I wasn’t “back to normal,” we believed that was only a matter of time.  After all, six weeks ago I’d been unconscious!  Now I could walk, feed myself, and void.  Although my entire left side was extremely weak, a few weeks ago it had been paralyzed.  My right arm was in a cast, but that would come off soon.  I couldn’t speak intelligibly, but when I first came out of surgery I couldn’t speak at all.  I had a four-inch gap in my skull covered only by a bandage, but we just needed to find a neurosurgeon to install a metal plate.  In other words, we were so grateful and relieved I was alive and well enough to be home that all remaining difficulties seemed trifles by comparison.

Reality hits home

For most TBI sufferers, that ebullience would erode over time and frustration with their continuing inability to “get back to normal” would set in.  The hard facts of TBI are that discharge from the hospital means only that the acute crisis is over; now the chronic one begins.  In my case, the chronic health issues included nocturnal grand mal seizures that repeatedly dislocated my shoulders, continuing sinus and vision problems, speech and language processing difficulties, numerous additional surgeries, and—always—constant pain.

Yet my hard-headed refusal to accept physical reality kept me from acknowledging even fear or frustration.  Perhaps because I felt responsible for causing my parents so much anguish and expense, I resolved never to let my accident or its consequences stop—or even depress—me.  I minimized the pain and difficulties I faced.  I stopped reporting my nightly seizures.  I laughed off being able to spell only 10 percent of words correctly on weekly quizzes.  My teachers passed me anyway.  I went to college, got married, had kids, built a career, and just kept demanding that my body perform for me—no matter what compensations it had to make in order to do so.  After 34 years of this, I was in agony nearly all of the time—and so were those who loved me.  They watched me suffer, but I wouldn’t even allow them to call it suffering.  I was in denial.  I had unrealistic expectations. 

Change of direction

It took a new doctor—34 years after the accident—to say something that got me to accept my actual situation.  He said, “With personal commitment to being a little better every day, you should be able to compensate for most of your brain damage.” 

My mind reeled.  Brain damage?  What brain damage?!  I was normal, wasn’t I?

I thought all the way back to that hospital homecoming in 1965, when we were all so convinced my “return to normal” was imminent—just a few short days, weeks, or maybe months down the road.  My parents had been through so much, I didn’t want to disappoint them by not getting back to “normal.”  I’d been muscling my way through life ever since. 

And, to tell the truth, it wasn’t just my parents I was determined not to disappoint—it was me.  If I wasn’t “normal,” what was I?  It was a question I’d never given myself a chance to answer. 

My doctor’s pivotal comment set me on a new trajectory, which began with acceptance.  I had to accept that TBI had caused brain damage and that my attempts to override that fact had made matters worse—forcing my body to invent new neural pathways to convince the wrong muscles to perform the tasks I demanded of it.  Leaving me in constant pain.  Putting my loved ones in constant pain, as well. 

A little better every day

I have since spent 10 years working patiently to address my physical limitations, rather than denying them.  I have adopted more realistic expectations.  I now have a new normal, which is also my mantra.  It’s called “A little better every day.”  With acceptance, patience, and hard work, my pain has diminished greatly.  I now can swim, rollerblade, and play on the floor with my grandkids.  I keep working, knowing that my new normal is a work in progress.  “What am I if not normal?”  A little better every day. 

Realistic Hope: Aspirations for Survivors of Traumatic Brain Injury

By Mark Palmer

To order your copy, click here.

By Terry Morgan

Finding the positive in brain injury

Anyone who can see the positive side has paid a price to see it.

This is how I arrived at the word price. When I was 38 years old I was on top of my game. A youth Pastor of one the largest most active and respected groups in Cincinnati, Ohio. We were known throughout the states and in many parts of the world. The ministry was good, times were good, and in fact I felt like a million dollars.

Brain injury changes everything

Then on May 19^th 1995 it all changed. While on a mission trip to Brazil, I fell 20 feet head first. Among many other injuries, I suffered a Traumatic Brain Injury. From feeling like a million dollars to having no feeling at all. From a million dollars to worthless. It has taken me 14 years and many experiences to where I am today. Which being is a survivor who now can see the positive side of TBI.

The price you have paid maybe higher than mine. For that reason, I don’t expect you to view TBI the way I do. Please allow me to share how after 14 years I have gotten my worth back.

Hypothetically my life was worth before the accident $1,000,000. To get my worth back, I have put some prices on things I consider the positive side of TBI.

• More time with family – Priceless
• Partially restored physical health – Priceless
• Partially restored mental health – Priceless
• Percentage of hearing restored – Priceless
• Percentage of tastes restored – Priceless
• Percentage of memory restored – Priceless
• Belief in people because of their response to offer help – $50,000
• Spiritual side of life increased – Priceless
• Confidence to do things again – $250,000
• Empathy for people increased – $25,000
• Sympathy for others increased – $25,000
• Love and understanding has increased tremendously – $50,000
• Aware of how much self worth is worth – $150,000
• Self worth comes from within not for something you can do – $150,000
• Real identity comes from who you are on the inside – $175,000
• Living within boundaries – $25,000
• Knowing we have limits – Priceless
• Being ok with who you are now and not what you were – Priceless
• Realizing your mental state might have changed but you are still priceless  – Priceless
• Understanding you can start over building a life without some of the baggage you had before – $50,000

Priceless!

I can see now things are worth much more than before. Some things are priceless and others add up to worth I had before.

The prices I gave certain items are much too low. For illustration purposes, I gave them an amount. I’m a much richer man because of my TBI.

It is my opinion that when we look at life from our heart and not circumstances we all can be wealthy. No one can take away that away from you. It is my prayer your life will be worth more than you ever imagine. Walk with your head up and know you are PRICELESS.

By Gwendolyn Gibbons

Life after traumatic brain injury

I’m one of the lucky survivors of traumatic brain injury (TBI). I am visually impaired in my right eye, have a few memory problems I guess, but I still have full use of my extremities. I can perform most household tasks with minimal guidance, and still enjoy many of the things I did when I was young, like going to parades.

I’m still living with my 77 year old Mother, and have the majority of my life. It’s a good thing, we have fun together, because in 1973 I was involved in a car accident, and needed her even more. I was only 22 years old then. I was working as a secretary in the records department of a local hospital, and was headed to classes at the business school I was attending when the accident happened. It was raining out, and the roads were slick. It was definitely not a day for a parade, but my life’s little parade made a sudden turn that day, one that wasn’t much fun. Luckily I was the only participant that day, so no one else was injured. The accident left me with a head injury, lots of broken bones, and an injured right eye, an eye that all these years later, still only provides a foggy vision.

Living a new life as survivor of a brain injury

But I was young. I had things to do. Since when has a broken bone stopped a young person? I don’t know how long I was unconscious, but I do know that once I woke up I was determined to get back to walking on my own as fast as I could. I couldn’t drive anymore, but I could sure walk to get where I needed to go, and I did.

I’m sure like most brain injury survivors there are periods of time I’ve forgotten, but I seem to be able to remember recent events, and luckily a lot of memories of my childhood are still there. Special times and events I always looked forward to, as well as memories of things most young women enjoyed doing. Memories of the “parades” in my life are still there.

Memory is still there after my brain injury

Perhaps one of my most precious memories is of those I spent on my Grandfather’s farm in Emporia, Virginia. I spent 16 summers of my life going there to help pick cotton and corn. They were summers that gave me a chance to spend time with my mother’s siblings, being spoiled and encouraged at the same time. I was encouraged to set goals for myself. They wanted me to do more with my life than they had with theirs. I was trying to do just that when my accident occurred.

My mother has grown comfortable over the years with my disability, and has no problem leaving me home alone while she goes out with friends sight-seeing at night, or hitting yard sales looking for bargains during the day. While she is out I’m busy doing chores around the house, thumbing through fashion magazines, or checking out the sale ads like I did when I was younger. When she is home, we enjoy watching Fashion Shows on TV, or the station showing homes for sale in the area. Come to think of it, we’ve both always enjoyed shopping, so it’s a good thing she can still drive, because I can’t anymore. She takes me anywhere I need or want to go, like to the 4th of July Parade here in my hometown of Hampton, Virginia.

I’ve always loved seeing the people along the streets, watching the bands and floats go by, hearing the squeals of the children, and hearing how people applaud the effort others have put in to help us enjoy it. I still enjoy going to movies too. I may not remember the entire thing, but who cares. I had fun. I’m still young inside, and I plan to remain that way.

Meeting other survivors

As you know by now, my mother does the driving for me. Several months ago she began to drive me somewhere special twice a week. She drives me to a Clubhouse where I can interact with other brain injury survivors. I’m a member of the Kitchen/ Maintenance Unit there. I’m still performing household chores, but I’m learning more about how to multi-task and work with others to complete a job. If I have a question there is someone there to ask. I participate in the Meals on Wheels program in the local area with other members, and I’m doing things I never thought I would do again. I’m having fun and enjoying the parade of a lifetime. I’m part of this parade.

Denbigh House is located in Virginia.

Denbigh House, located in Virginia, is a clubhouse for people with brain injuries. You may contact them via email at denbighhouse@gmail.com

By Mary Margaret Yeaton from New Hampshire

Does anyone know where I left my brain this time?
Yesterday they put it back in my skull
But it must have run away while I was asleep
Because I can’t find it today

I thought I saw it in my dream
It didn’t look so good
But the damn thing had found my car keys
So I just figured it would wake up with me.

I am still looking for my keys
They must be with my brain

I already checked under the bed,
I asked the dog if she took and ran off with it.
I even checked the freezer hoping the kids didn’t
mistake it for hamburger.

I looked in the mirror
And didn’t see anything but my face
I asked myself where on earth I put it this time
I won’t tell anyone I answered myself
They will only laugh and say,
“Why that is ridiculous,
It is right where you left it!”

Where is that? Where is the place I left it?

If you think looking for your car keys is a pain
in the neck,
Just try looking for your brain!!!!!!

By Diana Lund in Illinois

Brain injury often goes undiagnosed – it’s just an accident!

I had a granduncle who, according to the family lore, was accident-prone. When he hammered, he missed the nail, struck his thumb and dented the wall. When he swung an ax, the tree fell his way. Relatives recounted that he broke every bone in his body and some bones more than once. He’s had several accidents on the job at the quarry, several home accidents and several car accidents – including a car accident on the first day he got his license back after several years of not driving. Good-hearted Alfred was hoodwinked by gypsies; they stole his wallet and later he let them into his home and they stole the contents of that too. The extended family thinks of him as having been normal – he played a savvy game of pinochle – with a string of bad luck. Now, I think that there must be some tie to brain injury; all those falls and mishaps are characteristic of a person with brain injury.

People think I’m normal but I have a brain injury

People call me normal too. My face and body are symmetrical and I’m mainly coordinated again. In conversation, I give relevant responses enunciated clearly. Only I can tell my wit is missing and my vocabulary shortened. Inside I scramble to keep up, to sound normal, to appeal natural. During the silence of night, I long to shed my deep-seated, lost feeling.

It won’t leave. All experience provokes it.

At a bike club’s invitational, I am handing out t-shirts at the registration table when a slim man, approximately my age – fortyish, approaches. His words startle me. “There you are. I’ve been looking all over for you.”

The rider obviously knows me, but I have no recollection of him. Not unusual, I play along. Possibly something he says or does will generate a flicker of familiarity in my brain. “Well, you found me,” I respond.

He continues, “I wanted to make sure you saw me so that I get credit for participating.”

Evidently, I’d pressured him into supporting our charity event. I want to show gracious acceptance of his financial gift. “Consider yourself with credit,” whoever you are.

“Have a good ride.”

Pleased with my acknowledgment, he departs. He has no idea I don’t know who he is. The next time I see him and don’t remember him, I’ll pretend again. And by god, I hope that I give him his credit.

Hiding my confusion after TBI

My confusion doesn’t always slip smoothly past others. At the end of a work day, in the block-long and block-wide company parking lot, the search for my car begins. Wandering down aisle after aisle, I run into a coworker who asks, “Can’t find your car?”

“Yeah, I’ve forgotten where I parked it.” Again.

Empathizing with me, she replies, “Oh, I’ve been scatter-brained like that before.

That’s normal. Good luck on finding it soon.”

Explaining my behavior after brain injury

People want to idenfity with their chums and naturally, try to explain others’ behavior by self comparison. If they have acted this way once before, then my behavior is normal.

They miss the totality of my existence; I make a string of mistakes—one after another after another. They are not seeing behavioral exceptions, but the rule.

Not only that, but the tips of our icebergs are all that we have in common. Upon finding her car, the placement jogs memories of having parked there. My experience is more like a valet had parked my auto; I can’t access parking-the-car memories. Having no internal record of the recent past feels frightening and hollow, like watery remembrances swirling down a tub with a leaky plug, abandoning me naked and cold.

Is a life lived if it is not recorded? Did “I” really exist?

Repeatedly telling me, “I understand,” minimized and invalidated my experience, no matter how well intended, no matter how much I wished it true. Out of frustration, I sometimes blurted out to the caring person, “But, I’m not normal.”

Typically, I heard back, “It can’t be that bad. I forget things, too.”

Unable to explain myself in enough detail on such short notice disconnected us further.

Mild brain injury is not so “mild”

Particularly after the first year of mild traumatic brain injury from a car accident, I had silent and invisible disablements, indiscernible to my daily contacts. If my acts weren’t flagrant, they’d lump me into slightly-off-my-game normal. Too many of the same errors and the tone would change to, “Okay, stop doing this. Stop being different,” with possibly some sardonic ribbing. Even people who knew I had a brain injury tended to discount the diagnosis in favor of my having control over my brain’s functionality.

Why should someone who looked normal not be held to the same standards as everyone else? I began to feel that it would have been better if I had a visible defect, like a black-and-blue shaved scalp.

Like my girlfriend Jill’s nasty head gash from a car collision. The doctors stapled her flesh back together. People became sympathetic and compassionate when they saw the dried blood, the jagged cut and the metal holding her brain in. I watched her for signs of a more profound injury, brain injury, which, fortunately, I could not find.

Unlike her, I looked unscathed after my closed head injury. The broken part of me was encased behind a smiling, pretty face, and mostly, my internal discontinuity appeared singularly as within-most-social-limits. No extra care needed here.

That’s just nonsense. When the brain, the master controller of operations, goes down, it can take years of intricate and delicate work to get that system running again. The healing process takes longer than the injured person’s acquaintances care to remain attentive. People prefer to think that you are fully recovered. They fill in erroneous reasons for unusual behavior. I didn’t return their phone calls because I chose to ignore them, not because I’d lost the inner nagging voice to remind me to call. I didn’t answer their email because they were unimportant to me, not because I hadn’t formulated an answer yet. Word spread around the office about my poor attitude and bad work ethic. My brain’s damage unrecognized, the gossip exacerbated my problems.

Normal is not the answer

After enough “You’re Normal’s”, I cringed at the glossing-over, uninvolved response. “You’re normal,” a superficial slap in the face, “You’re normal. You’re normal,” a platter of platitudes, stung deeply. Each day I strained toward attaining the far away goal of normal I supposedly already had. Suggesting ways to remember where I parked my car, reminding me about an unanswered phone call, or trying to calm me down when I over-reacted, would have eased my load until I could learn to compensate for my faults. Increasingly isolated, I came to resent “normal” people living blindly to my abnormal life. Another normal-looking brain injured woman I’d met tried to commit suicide because she couldn’t overcome problems that friends and family didn’t view as sizeable.

Nothing irked me more, no single misunderstanding damaged my social life more, than the misnomer of normal. Whoever would have guessed during my young, smart life that, someday, I would aspire to be normal, and afterward, daily, people would assure me that I was.

Work to include others authentically. Diversity enriches our lives.

By Mary Margaret Yeaton

Life was full of terror after my brain injury

 I didn’t make this one up on my own. The inspiration I share with you is the blossom in a simple gift of kindness given to me.

It was Easter when the aneurysms in my brain ruptured and killed a portion of my right frontal lobe. Within weeks I was home – walking, driving and pretending to think that everything was okay.

By early summer I could no longer hide the terror I felt for myself. I was forgetting to eat, shower and take my medications. I seemed to have forgotten how to make coffee or soup. I was forgetting where my kids were and what I was supposed to be doing. Stuff I knew when I first got home, I think?

The gift of color helped me cope with the effects of my brain injury

Then a friend came over to visit and brought me a gift that colorized my life. With her, she brought a dry erase board and colored markers. With 4 simple colors we put together my first daily coping skill.

First we used the black marker to section off days of the week. Black became my separator color. I picked red to write down things about me, like my doctor’s appointments. I actually wrote, EAT, SHOWER, TAKE MEDS in red on each day of the week. I picked green to write things about my son, because he likes soccer and green reminded me of him. So I wrote “pick up @ 5 pm soccer” down on the board. Lastly blue was perfect for my daughter because that is our favorite color. So I wrote “work 6 pm” to remind me to pick her up from work @ 6.

When I held this board in my hands and looked at the colors, immediately I felt the recognition to the things in my life. They connected. Finally something to help me remember to take care of me and be the mother I want and need to be.

Over a year and a half later, I have graduated from dry erase boards to calendars and my day timer. My colors are still with me, from the creation of that dry erase board to this day. Every Sunday I write on my spaces with red, green and blue. I am no longer terrified if I forget something I think I should know, because if there is an important item it is written in red. If something refers to my son, it is in green and if it refers to my daughter, then it is blue. Schedules, medications, appointments, meetings and mom duty all have their color for my brain.

A color system for my brain

Many people involved in my recovery have told me what a valuable skill and tool I developed. My color code system has helped me retrain my brain to have a short term memory, helped in my cognitive processing, organizing and prioritizing.

What I know is how much safer and confident I feel getting through each of my days. I am able to make all of my doctor’s appointments and know where my kids are at all times. For if I forget, I have my notes in color to remind me. I feel that I have more control of my life and my recovery.

I know I am a stronger survivor and a better mother.

By Carole Starr

• Asking for and receiving help are not signs of weakness. They are the first steps toward regaining my independence in accomplishing tasks and goals.

• I am a strong person. I may have weak moments and I may get scared, but my determination, motivation and refusal to give up will always win out.

• I can work toward my goals, but I can also be happy with where I am right now.

• Giving in is not the same thing as giving up. Giving in means taking care of myself and doing what my brain and body need to continue to recover.

• I am not like Humpty Dumpty. My self-confidence, self-esteem and sense of self may have been shattered, but I will be whole again, not just a cracked version of my former self. I will emerge different, but stronger.

• There are things I like about the “new Carole.”

• My empathy and perception skills are stronger.

• I more clearly understand pain, suffering, failure, frustration, depression, loss of hope, and on the positive side, the joy in small things.

• In many ways my life has more balance than it did when I was frantically rushing from one activity to the next.

• I have discovered that I really enjoy making crafts and gifts for family and friends.

• I understand how much a small gesture – a card, a phone call, an e-mail, a hug, a plate of muffins, a flower – can mean to someone who is going through a rough time. These things are often lost in our busy, time-starved world.

• I am closer to my family and friends. Even though some have drifted away, many of my relationships have deepened. I let people in more. I accept help.

• Even though I can’t work right now, my sense of career has never been stronger or clearer.

• I want to help others who are adjusting to having a disability, and I want to incorporate the arts into that. It’s as if the brain injury somehow added the missing piece to the skills I’d developed pre-accident.

• Attaching deadlines to my goals only sets me up for failure, frustration and loss of confidence. My brain is in charge of the pace of my recovery, not some arbitrary deadline.

• Small successes will gradually add up to big successes. I have to break my goals into small, manageable steps.

• I will probably always feel some sorrow when confronted by activities I can’t do yet, but the intensity seems to lessen as time passes and the list of things I can do grows as the “new Carole” gets stronger. I become less attached to the past, more joyful in the present and more hopeful for the future.

By Beverly Bryant, Maine

Wearing the label of brain injury

The right to fail seems to be reserved for that part of the population that is deemed creative, daring, confident and “normal”. Unless I have two good legs, two good arms and an uninjured brain, to fail is no longer a right at all. It is wrong.

Those labeled with a brain injury are told we tend to take on too many responsibilities. We set ourselves up for failure. We must limit ourselves. We need to be selective of our activities and prioritize our needs. We need to learn to say, “No”.
Others can try to do it and strive for that impossible feat.
We cannot set such high goals because we don’t have the endurance.

Others are expected to do their best at all times.
We are not expected to perform with excellence and are forgiven for less than our best.

Others can be daring when they reach for untold heights.
We are using poor judgment.

Others are exciting when they walk where no one’s walked before.
We are foolhardy if we do it and impulsive if we try.

Others are programmed to believe the sky is the limit.
We are programmed to believe the next task is the limit.

Others say, “No” when they wish to be self-assertive and strong.
We say, “No” and are labeled unresponsive and unmotivated.

Others do something different and it is praised.
We do anything and it is analyzed and deciphered.

Others remember well sometimes, but make the same mistakes again.
We do not remember and make the same mistakes again.

Others are absent-minded and laugh about the results.
We have brain injuries and it is not funny anymore.

We are different, you and I.

At one point, so long ago, we were much the same. We thought the same and even looked the same. Then one day it all changed. Your life kept moving along and mine took a different path. We are both going in the same direction now, but on different pathways. I am sure you will get there before me, yet we will both end up at the same place eventually. That is all that is the same anymore.

No one truly understands brain injury unless, they’ve had to live with one.

If I should lose a limb, it would be a traumatic experience. But I would know what I had left to live with. I could make my own decisions and plan my own life. If they told me tomorrow that I have terminal cancer, I can not imagine the sorrow I would feel. But I could use those forces, spiritual, emotional, and physical that I spent my lifetime building to guide me. I could draw on my memories and the strength of character and personality to carry me through the hard times. I would know who I was, where I was going and what I had to work with.

A person with a brain injury returns home a different person.

My personality is changed. My memory is changed. My work habits are changed. My abilities are changed. My family is changed. My perceptions are changed. My reality is changed. I have to begin again to build those things that made me, ME

I am born again into a warring battle of desires and expectations.

Those who know about my injury expect less of me than I might be able to give. They are surprised when I do more than they believe I am capable of. Those who do not understand my injury expect me to do more than I can and they are disturbed when I cannot reach my old limits.

Yes, we are different, you and I.

You see, I begin from your failure. My best is accepted sometimes as your worst. And sometimes, my worst is accepted as indicative of my best. I am offended. I want better than that. I DEMAND better than that. I am a very capable person. I demand the right to blaze my own trail, wherever it leads; to forge ahead at my own speed, however long it takes and to be my own guide, regardless of how many directions I have to follow. I have the right to choose my own challenges and to follow my own heroes.

I demand the right to excellence.

I not only can do things, I demand to be expected to do them with quality and pride. I am capable and I need to be allowed the opportunity to show you. Like all people who strive for excellence, I will face failure. So occasionally I will need a warm hug or a word of praise or encouragement to pick myself up and begin again. There is no loss in failing because I am making the attempt to succeed and facing the challenge. The only real failure is never trying in the first place.

I have the right to fail.

I do not plan to, but I have that right. No one, absolutely no one, will ever take that right away from me. It is from that failure that I will move onward. It is from that failure that I will grow. It is from those failures that I will dare to be silent no more. It is from those failures that I will forge my excellence. WATCH ME!