The Butterfly & The Cocoon -- Struggling to overcome brain injury

On my Facebook page,  "Living with Brain Injury" I refer to my followers as butterflies. People often ask me "why?" 

Ask any brain injury survivor (or their loved ones) what life is like living with brain injury, and undoubtedly, they will insert the word, "struggle" somewhere in the conversation.  

I've learned through my own emergence from the cocoon of learning to live with brain injury that the struggle is part of the process of allowing us to spread our wings to bring the world the lessons we've learned through our challenges.  


At the start of my rehabilitation, I thought my life, and my contributions to the world were over.  I was a professional athlete before my accident.  How could I continue to contribute to the world when my profession was now in my distant past?  


I learned through this journey that I had so many other gifts to share with the world---ones that emerged through my struggle and emergence from my cocoon.  I share my journey as a motivational speaker/author these days.  I'm told that my struggle has become an inspiration to others still struggling to emerge from the dark, scary place of a brain injured cocoon. I found through sharing my story, and lessons learned; that I could still contribute to this world that overwhelms, terrifies and no longer accommodates me. I could never before have imagined myself doing this...now I can't imagine doing anything else. 

The following story is a touching account on how the struggles in life are difficult, but sometimes necessary.  I didn't write it, but I speak about it in my presentations, and it is the catalyst for naming my beloved butterflies who support one another, myself, and other family members touched by brain injury.  

For all the butterflies who have emerged from your cocoon....injured, but not defeated...bless you. Embrace the gifts gleaned through your struggle and use them to bless others.  Your journey is not over---its only just begun!  For those who are still struggling to emerge into an uncertain future, we are praying for you and spreading our wings to support and encourage you.  

Through our collective struggle, we can educate, support, and show our beauty to the world.

The Butterfly and the Cocoon

A man found a cocoon of a butterfly, that he brought home. One day a small opening appeared in the cocoon. He sat and watched the cocoon for several hours as the butterfly struggled to force its body through that little hole. Then it seemed to stop making progress. It appeared as if the butterfly had gotten as far as it could, and it could go no further. The man decided to help the butterfly in its struggle. He took a pair of scissors and snipped off the remaining bit of the cocoon... and the butterfly emerged easily.

As the butterfly emerged, the man was surprised. It had a swollen body and small, shriveled wings. He continued to watch the butterfly expecting that, at any moment, the wings would dry out, enlarge and expand to support the swollen body. He knew that in time the body which would contract and the butterfly would be able to fly. But neither happened! In fact, the butterfly spent the rest of its life crawling around with a swollen body and shriveled wings.

It never was able to fly.
 

What the man, in his kindness and haste, did not understand was that the restricting cocoon and the struggle were required for the butterfly to be able to fly. The butterfly must push its way through the tiny opening to force the fluid from its body and wings. Only by struggling through the opening, can the butterfly's wings be ready for flight once it emerges from the cocoon.

 

Sometimes struggles are exactly what we need in our life.  If God allowed us to go through our life without any obstacles, it would cripple us. We would not be as strong as what we could have been…and we could never fly.

~Original Author Unknown

Kimberly Carnevale

Motivational speaker/Author/Educator

www.KimberlyCarnevale.com 

As the anniversary of overcoming our homelessness approaches, God provided us with an unexpected and precious blessing

Edit HTML

From the time we "hit the road," leaving behind all that we knew nearly a year ago, all of our well-made plans crumbled one by one, leaving me reeling; trying desperately to find firm footing and God's plan for our lives.

From the very beginning, I have yearned not only to be able to support myself and my little girl through disability-accommodating income, but so deeply desire to utilize the gifts of amazing life lessons that I've learned through my tremendous hardships in order to honor God and be a blessing to others.

For the past decade, I'd devoted my life to my ministry, Canine and Abled, Inc.  Back on the East coast, I was blessed to be given the opportunity to advocate for other people with disabilities, educate about disability/service dog awareness, and share my testimony and story of how God turned my tragedy into triumph.  I felt so blessed to be in a position of paying forward the second chance at life I'd been given, and I very much looked forward to continuing and adding to that ministry here in TN.  Unfortunately, introducing a  nonprofit into our new home state during tough economic times proved unsuccessful, and I was forced to shut down my beloved programs and search for alternative ministry options.

Last week, I had an unexpected encounter with a homeless woman. We had a good laugh over something funny, and before I left, I gave her all the spare change I had. I haven't been able to stop thinking about her since.

On Saturday, Sarah and I stopped to use the restroom in a McDonalds, and I ran into another homeless woman huddled in a booth in the back, counting some change. God laid it on my heart to give her a certain sum of money---so I did. Her tired, weathered face instantly perked up; gratitude, surprise, and sheer joy lighting up her seasoned features.  I found myself longing to know her story.

Not wanting to intrude, despite having so many questions, I let her know that God, Sarah, and I love her and turned to leave. A single tear slid down her smiling face as she lovingly grasped both my hands in her wrinkled ones. It suddenly dawned on me...this is someone's grandmother, mother, sister or daughter---where was her family?  A knowing look exchanged between us--we were kindred spirits; this gentle, beautiful soul and I. Our eyes met, we smiled at each other through tears that readied to spill over, and I was humbled to my core.

That encounter blessed me beyond words, as less than a year ago, Sarah and I were homeless ourselves. For 4 1/2 years before coming to Nashville, we struggled to overcome unexpected and tragic circumstances that caused the loss of our entire family and home.

It had been my dream to be able to pay forward all the kindnesses that were shown to us throughout our homeless and difficult times; and here I was, being granted that wish. Though I was technically the giver in this situation, I received so much more than I gave. I felt needed, accepted, and was utterly blessed by being given the opportunity to do something for someone else.

It's been very difficult for me to acclimate in this new place where I knew no one, and where some locals feel a bit suspicious of outsiders.  Despite my strong desire to find ways to help others, many situations left me feeling largely rejected and unwanted.  However, these women weren't suspicious of me, they didn't reject me, or see me as an outsider; quite the opposite was true.  They welcomed my presence and gratefully received the small gift and love that I offered them.

I saw myself in the eyes of those homeless women, and know without a doubt that our meetings were not by happenstance. God had laid it on my heart  to lift up and encourage those women....and others who have lost their homes; and I pray and look forward with expectancy that more of the same type of opportunities will arise to enable me to do just that.

Paying forward all the kindnesses that have been bestowed on us, and being given the precious opportunity to love on the people such as the ones I've recently met is such an honor and blessing. It  makes all that Sarah and I have gone through so much more meaningful seeing it played out now as part of God's plan, and I pray that God allows me more opportunities such as these in the near future.

God is sooooo good!

~Kimberly

Kimberly Carnevale is an author/motivational speaker based in Nashville, TN, who takes great joy in sharing her testimony and amazing story and life lessons with others.  Her unique insights come from someone who's nearly lost their life and scratched and clawed their way back to success.  These pertinent life lessons inspire the corporate world, politics, and day to day living.  She is available for nation-wide bookings.
www.KimberlyCarnevale.com

Resource Mapping--my personal map to overcoming brain injury dysfunction and embarking on the journey to independence and success

Since obtaining my brain injury in 1998, I've been blessed to share my tragedy to triumph story as a motivational speaker (http://www.kimberlycarnevale.com/).  My speaking provides me with an artistic/spiritual outlet, as well as the potential for a very necessary disability-accommodating supplemental income I need to be financially stable.

 I recently gave my speaking site a "makeover," to bring it up to date, spruce up and enhance the visual content and make sure that my visitors have an enjoyable experience while visiting my site. 

When re-arranging all the objects and information on my site, I have a "map" in my head...something that I envision in my mind that I try to reduplicate on my web pages.  When I'm writing articles/books, the process is the same; I have a picture, or map, in my head and my goal is to transport my readers through my story in order to provide them with information, share something with them, or make them feel a certain way about my subject matter.

Since sustaining my brain injury, I find that I am a very visual learner.  For me, having a map to guide my creative process ensures that my completed project will turn out as I envisioned it.  It keeps me focused, brings me back to original ideas, and keeps me on track if my injured brain starts to get confused or wanders off topic.

Two weekends ago, I was privileged to partake in a process, which I believe, has forever changed my life for the better. The process is called "resource mapping."   Just as its name implies, mapping outlines a map that the survivor can follow that will lead to their chosen goals/destination in life.

The map process outlines short/long term goals of the survivor, recognizes the road blocks that currently exist, comes up with viable solutions (via extra support), and assigns specific tasks to a group of supports to help the survivor reach their goals.  Support team members are given specific and time-related tasks to fill in the gaps of the survivor's dysfunction to help the continuation of forward progression of tasks (especially pertinent in times of cognitive slides and recovery), and clearly defines the steps that need to be taken to get to the chosen goal.  

Since my arrival in TN, I have not had the trained supports that I enjoyed in NJ.  These supports came in the form of trained social workers and kept my life organized, re-introduced me to my projects after recovery time (to prevent back slides of productivity), and helped me accomplish multi-step tasks, which are the most troublesome to me since brain injury.  Subsequently, I slid.  A lot.  It made getting my once-successful business off the ground here, virtually impossible and kept me in continuing financial lack.

Projects which I started but had to stop in order to recover from cognitive impairment, became overwhelming masses of UN-processable information spewed everywhere. Forgotten steps in uncompleted tasks remained unattended to, further complicating many financial and daily living issues, and utter cognitive exhaustion left me unable to attend to anything other than the basics of life.

I was holding my own, tunnel-visioning and taking care of the primary necessities of life...but that was all. I was in sheer survival mode. No matter how hard I tried, I just couldn't gather and maintain the wherewithall and creative cognitive functioning that would take me above my current "survival mode" life situation and bring me to the level of financial independence/success that I enjoyed in NJ with my extra supports.  The stress of the continuing failure cycle took its toll and added to my feelings of being overwhelmed and discouraged as well.

But then, an idea came; sparked by my former social worker (and very dear friend), Amy from NJ.  She had just attended a mapping training for her job, and the entire time she was in class, she kept thinking, "This is exactly what Kim needs!"  And so, she and her co-worker, Cailynn, drove all the way from NJ to TN to begin teaching my support team the business of resource mapping. 

My team (which consists of close, trusted friends), and mapping coordinators met up for an intensive, six-hour mapping session which perceptively defined my goals, the issues/dysfunction I experience that prevents me from reaching my goals, assigned people to time related tasks, and set in place future tasks/time frames in which to be completed in order to reach my short/long term goals.  Plans were also put into place to re-assess goals as they are met, and plan for new tasks; which will be assigned accordingly to new goals in order to ensure that the map grows with my progression.


My favorite part of this process is that now when I have my cognitive slides, I will no longer experience the back slide of production that I've encountered here without support.  I have a point person who keeps in constant daily contact with me and directs the rest of my team according to my present needs. My team will be keeping up with the things that need to be done, phone calls that need to be made, and contacts that need to be attended to, so that my business will continue to grow, even when my brain decides to misbehave. 



My map

 Since my mapping (just two weekends ago), I've already experienced a tremendous burst of restored brain-power and functioning, because my supports have taken over the tasks that my brain has trouble processing.  Having those tasks taken care of allows me to put the worry out of my mind and focus on something else---something that will help propel me and my business forward.

To say this process will have a huge impact on my life is an understatement.  I feel this is exactly what I needed to keep my life as independent, functional, and productive as possible. I feel as though the cavalry has arrived at last! 

Just as I create and implement the pictures/maps in my head for redesigning my web site, crafting speeches and writing articles, I am now able to perceptively see my goals and each step for those goals on my resource map.  I no longer have the feeling of anxiety to complete a task that is overwhelming to me, because supports are in place to accommodate that area of my disability; freeing me up to do what I love to do best---be an unstressed Mom and be able to embrace and enjoy the time I spend with my little girl; and share this amazing journey and God's grace with my audiences and readers and helping others to believe in the beauty of their dreams.

I'll keep you posted on my ongoing experience with this process and will share anything else that is pertinent in the future. For more information about mapping: http://www.inclusion.com/maps.html  

Blessings to you all,
~Kimberly
http://www.kimberlycarnevale.com/

The Lollipop Lesson---the story of the struggle with brain injury in homelessness and how a little girl and a lollipop brought forth hope, faith and healing

This is the true story of our homelessness, written in 2007.  I reader of mine requested a re-posting and so here it is.  Blessings to all.
*****************************************************


October, 2007:


It's been a difficult year to say the least. My daughter, service dogs and I lost our home and entire family due to a brutal attack right about this time last year. We’ve depended upon the kindness of others to provide temporary shelter; and are truly grateful.

For a while after the attack, I was numb. Post Traumatic Stress froze my emotions in an attempt at self-preservation. I tried to remain strong for my daughter, waiting until she was asleep to cry the tears of fear, loss, and panic that gripped my heart.

I tried desperately to rationalize the situation, but no matter how I looked at it, I came up empty. I kept thinking, "On the whole, I'm a good person. I give of my time, possessions and my heart to others. I treat people fairly and always try to do the right thing. I’m teaching my daughter the same Christian morals and values that had been instilled in me as a child..." and yet, though I was a good person, and my daughter was an innocent; we sustained a brutal attack brought on by alcoholic rage of a once-loved and trusted family member. I couldn't get my mind around the betrayal. I prayed—a lot. I was disheartened that I didn't get any response, and felt that God had betrayed me as well.

I became obsessed with my loss, and the injustice of the whole thing. At one point, I felt as though my daughter might be better off without me, that I was holding her back from having a secure future. If she were placed with a real family, then she would have a chance at a good life...one with a roof over her head. I was the one who was disabled and unable to provide adequately for her; I was excess baggage. She had her whole future ahead, and I feared that having me in it ensured her a difficult and dismal one.

I felt as though I failed my little girl in so many ways. She misses her friends, a room of her own with pretty things, and the security of knowing what tomorrow will bring. The guilt felt like a wet coat, gradually getting heavier, weighing me down and preventing me from moving forward.

I've learned so much from my little girl over the past year, and I look at her with a new wonder and admiration these days. Though she clearly remembers the horrors that no child should ever have been witness to, she forgives as we are taught early on. For most, true forgiveness is lip service. "I forgive you," is a benign phrase we are prone to say when we know we should, but we often lack the ability to truly let go. Not my little girl. She still remembers the attack, still feels the loss; yet she has somehow found it in her heart to completely forgive our attacker who hurt us so badly.

She never complains, although she has every right to. She went from having a beautifully decorated bedroom of her own, to having only what the police could load into our van that cold, scary night; and a few subsequent, police-guarded truck loads that permitted us a few more boxes of belongings. The rest was left behind...along with the only home she ever knew, all her friends, and the innocence and security that should be a child’s right; all that was cruelly snatched away from her.

Advertisements for toys, trips to amusement parks, and other things that she can’t have taunt her at every turn, yet she is the first to offer up one of her few remaining and cherished toys to another child who is sad or hurt. At bedtime, she offers up prayers to others, never asking for anything for herself, because she feels as though she has all she needs.

She doesn't complain when I'm sick and can't play with her, doesn't seem to notice that my speech slurs when I'm tired, or that I move a lot slower when my injured brain gets overwhelmed, or my MS flares. She doesn't complain when I can't give her the extra things I know deep inside she would love to have...only issues an "I love you Mommy...you're the BEST Mommy!" whenever possible, seemingly oblivious to my disabilities and my shortcomings.

I dug through the change at the bottom of my purse and bought her a lollipop at the store today. She'd had her eye on it the entire time we were in line to pay for our purchases. It was the kind of lollipop you'd see in days gone by that are twisted with different colors; a neat old-fashioned pop that cost $1.00. She never asked for it, never whined or even gave me the "look" that pleaded silently...which is exactly why I decided to get it for her. I really couldn't afford it, it's the end of the month and I only had $1.35 left to my name. I wouldn't have any more money coming until the first of the month, almost a week away, when my scant disability check arrives... but she'd been such a good girl, and I really thought she deserved a special treat. I foolishly worried that my last few cents should've been better spent.

For several months, my little girl knew we couldn't afford anything but the bare necessities; so she never expected anything more. When I reached into my purse and counted out enough for the pop, you would have thought I gave her the key to the magic kingdom! "Thank you Mommy! You're the BEST Mommy!” She shrieked with sheer joy, thankfulness gushing from her lips and unabashed love and joyous tears shining in her eyes as she hugged me with every ounce of strength her tiny body could muster.

All at once, the cloud of despair that had hung over me lifted and I shed the coat of guilt I'd been carrying for so long. Throughout our ordeal, my daughter focused on the values that I'd worked so hard to instill in her; to appreciate what you have, never wanting more than you can fully appreciate. (I never knew how on target those lessons would be). I'd taken her to church, and taught her how to pray; always thanking God for the gifts in our lives...and trusting Him when things didn't go so well, knowing that He had plans in mind that we may not be privy to. I had many conversations with her about the value of "things" vs. the value of our relationships..with Christ and with one another. She'd listened. She paid attention! Most importantly, she Applied what she knew of her relationship with God to her not-so-great situation, and emerged virtually unscathed. It dawned on me that though I had my shortcomings, and though I was disabled and didn't have much to give her in a material sense; that I was her mother... and in the midst of upheaval, the lessons I'd instilled in her from birth paid off in a big way. I'd done something right! Something very right.

I knew without a doubt in that very instant, that I was the family that my little girl needed. I knew that I wasn't baggage holding her back; I was the glue that was needed to keep us together. I knew that my daughter needed me and loved me despite my shortcomings, and despite our situation. She was doing exactly as God teaches through scripture... to be happy right where you are; not waiting for something to change before deciding to be glad and grateful. In the midst of my grief, I'd forgotten that; but my daughter remembered, and God made sure she reminded me. I knew without a doubt that I had been blessed from above. With tears in my eyes, I realized that the angel that stood happily devouring her unexpected treat at my feet had also blessed me; and I was never going to be the same.

I was in awe at this child of mine, and I was so thankful for the lesson she’d taught me.... while I’d wasted my time feeling guilty and focusing on what we'd lost, my daughter had moved on and was focusing on what remained...something that was more important than anything else; through it all, we had each other---all the rest was icing on the cake of our life...or in this case, lollipops in the candy jar of life. Though I only had 35 cents to my name, I felt richer than ever.

My daughter's youthful insight to an adult situation brought me to a place where there is no longer any room left for doubt or worry; leaving me with the ability to put all those useless feelings that had been cluttering up my mind behind me, ultimately freeing me up to enhance my life through opportunities I have since created from my new perception.

Though she's only four, my daughter has the ability to be able to look past what she's lost to find true joy and satisfaction of having only the very basic necessities; and being truly grateful for them. She rejoices in the simplest of kind gestures and goes out of her way to do the same for others. How many of us adults can claim that?
I've learned a lot from her; I hope you have, too.

In the spirit of giving, I wish for your life be blessed with the insight of my little girl, the shedding of your wet coat, a new and positive perception of life...filled with an unlimited supply of lollipops.


--Proud to be the one Sarah calls, "Mommy"

Postscript:

Kimberly and her daughter, Sarah have recieved an outpouring of letters, emails, and requests to know how they are doing since the writing of the Lollipop Lesson. The year is 2011, and Kimberly and her daughter have overcome their homelessness and are living very happily with their dogs (Dawson, Gracie and Nadja), in a beautiful apartment in middle Tennessee.

Kimberly has introduced her award-winning motivational programs and canine educational programs in their new home state, and it is showing tremendous promise. She trains dogs and shares her biblically-based training principles with their owners to eliminate behavior issues and bring out their God-given ability. She is currently working many writing projects, including a heart-felt journey into the last few years of her life and the tremendous lessons God taught her through the darkness...and through her lollipop-loving little girl.

Kimberly and Sarah volunteer with their therapy dogs with law enforcement, child welfare agencies and anti-drug coalitions to help victims of abuse and alcoholism. Kimberly is a staunch advocate for brain injury awareness/prevention and keeps a blog about what living with brain injury is really like. She works with many organizations to improve brain injury reform in America and speaks to any group that will benefit from her story in order to pay forward the second chance God has given her.

Sarah is thriving in her new stress-free environment and takes her school work very seriously. She even studies on her own, because she knows that dreaming big and working hard towards that dream is what leads to success. She demonstrates canine behavior skills with her mom at their events, and wants to be an animal behaviorist and work with zoo animals when she grows up. She's learned through her experience that it takes hard work to make dreams come true---but they really do come true if we work hard, have faith, and stay positive--keeping our lives filled with lollipops.

http://www.kimberlycarnevale.com/
http://www.canineability.com/
Copyright 2007 by Sarah Lynn Communications, L.L.C All Rights Reserved
To contact the author: canineandabled@aol.com

For those who doubt validity of "invisible disabilities," and for those who seek better understanding---Welcome to my world; A Day in the Life of Living With Brain Injury and Cognitive Dysfunction

I woke up this morning at around 9am, and stayed in bed until almost 11. It wasn’t because I was still tired, or because I was feeling lazy. It was solely because I was afraid to venture out of the safety of my bed; knowing that with the cognitive dysfunction I was feeling yesterday, it was likely to remain (or gotten worse) and was waiting to pounce on me.

Courtesy of the accident that left me with my brain injury, I have severe tinnitus. My ears always ring; they have since the day of the accident. It also left me with major hearing loss on my right side. I've modified the tinnitus part of my disability by always having a TV or radio on in the background of any room that I am in to try to drown out the incessant buzzing.  But today, the ringing is LOUD, in both ears…and very painful. Any additional environmental noise on top of that ringing is torture.

I tip-toe through my apartment, as though that might help the pounding in my head; or lesson the incessant and very loud ringing. Of course, it doesn’t.

The phone rang this morning, nearly severing the composure I'm clinging onto by a thread. The sound of the phone ringing was like hurling spikes into my head. The message machine clicking on after the unanswered four rings sends me deeper and deeper into my spiral downwards; and so I’ve been forced to unplug it.

I'm very much looking for any type of comfort, in any form. Coffee. I love my morning coffee, but when I turned the faucet on to fill up the kettle, the noise of the water rushing out of the faucet actually made me gasp in pain, and I quickly turned off the spigot to stop the onslaught of a very unlikely environmental weapon formed against me.

When I sit in the quiet, I start to feel a tiny bit better. My brain seems sated and its nearly bearable; though I sit in deathly fear of someone coming to the door, or the dogs barking at something; things which will surely steal the blessed moment of bear-ability I’m currently experiencing.

And then, the feeling of  guilt from doing "nothing" sets in and is replaced by the "need to get something done” starts to tug at my heart. I'm well aware of the mountain of things and projects I need to get done in order to grow (and keep) my business running, keep my household neat and running efficiently, and all the countless other things that tug at me in every direction. I'm also well-aware that the world will not slow down or wait while I try (unsuccessfully) to keep up, and there will be a whole lot of overwhelming "catch up" to play when this dysfunction finally decides to let me go and live "normally" again....for a little while, at least.

 I have an intense work-ethic borne from being a professional athlete in my former “before-brain-injury” life. If I’m not doing something to earn my way, I feel guilty---even when I’m sick. I feel as though I should just be able to push through it and get on with life. But as soon as I try to do anything, even the simplest tasks such as vacuuming the floor, or folding the laundry; becomes impossible, and the effort sends me deeper into dysfunction and confusion. Athlete mentality doesn’t always work with battling brain injury. Sometimes, most times, in fact; you just need to rest to heal.

Sitting and healing. That’s just about all I’m up to at the moment. If I sit long enough, I just might gather enough cognition to be able to go to the park for a quiet walk, or go to the swimming pool for an afternoon dip…but I’m at my brain’s mercy. The uber-strong desire to get on with my life is in a constant, and losing battle with my reality. Tears prick at the backs of my eyes, threatening to spill over in sheer, overwhelming anxiety of the uber-desire and need to get on with life; but sheer, heart-breaking inability to do so.

I dearly love my friends, but in this state, its difficult and overwhelming to be around them.  Just having an extra person in the room is way too overwhelming for my injured brain to process. Trying to hold a conversation is a monumental task that I don’t have enough “brain” reserve for…and something I’m just not up to. I’ve been down this road before…have taken offers of well-meaning friends to hang out, or do something low-key. And it exhausts me and depletes me--extending the cognitive torture for longer amounts of time.

What many don’t understand is that in this state, if I even talk, I’m setting myself up for a major downward spiral at the end of the day. I know if I try to use the small amount of reserves I have left to talk; I will pay the price for utilizing too much brain power, and after they leave, I will spiral into a deeper dysfunction.

And so I hide. I hide from a world that terrifies me and is so painful to me in these moments. I hide from people who doubt me, and choose to believe that I’m in some way “faking” or “stretching” the devastation of my disability. These folks don’t understand, and don’t care to learn about my invisible disability, which is every bit as debilitating as any physical, visible disability; if not more so.  

I think about a car that's engine has blown.  At first glance, the car appears normal and fine, and it may be difficult to see that anything might be wrong beneath the closed hood.  However, if you tried to start that engine, or work any of the car's components (radio, air conditioner, etc.,), those systems would fail because the car's engine...it's epicenter has been damaged. 

A look under the hood by a good mechanic would provide a definitive diagnosis.  At that point, most people would find it perfectly reasonable to believe that if a car's engine is damaged, the rest of the car wouldn't work so well.  And yet, when a human being's epicenter (the brain) is damaged, and someone has been diagnosed with a traumatic brain injury, subsequent dysfunction and disability is often shrouded in disbelief and doubt. 

And so, when I emerge from my healing cocoon from my latest dysfunction, appearing “normal” and “fine,” I solidify the doubters’ opinions of me and my “so-called disability.” 

This is the face of brain injury. I look fine. But looks can be deceiving. Just because you can’t see someone’s disability doesn’t mean that they don’t suffer from it; and all the challenges that go with it.

Traumatic Brain Injury affects millions of people, their family and caregivers. It disrupts lives, breaks up many marriages and puts a strain on relationships. The fact that many symptoms are behavioral, emotional, or cognitively based makes it difficult for the casual observer to be compassionate, and many times, TBI patients are wrongly accused of “being lazy, irresponsible, have lack of control, or just plain crazy.”

TBI patients feel a sense of loss over their lives, and feel badly for the behavior that they have trouble controlling. Many are misdiagnosed, and suffer symptoms for years before proper treatment is provided. Others have trouble accessing resources, and get lost in the system, never fully able to take advantage of programs/assistance that is available to them due to the lack of advocacy.

If a patient doesn’t have close friends or family members to navigate the very limited resources that are currently available for Traumatic Brain Injury, they miss out on health care, daily support, and even basic care needs.

I think this bears repeating: Traumatic Brain Injury is often invisible to the casual observer; but just because a person doesn’t show outward signs of a disability, doesn’t mean that he/she doesn’t suffer from it; and all the challenges that go with it.  Education and awareness is key to patients with TBI to find the compassion, tolerance, and assistance they need.

The next time  you hear about someone with an invisible disability who is suffering; pray for them.  Offer to help them.  Let them know you're thinking about them and learning more about their disability so that you can be more compassionate. But probably most importantly---believe them---they're already battling a demon bigger than you can even begin to imagine.  Having to prove their dysfunction and struggle in order to be accepted is simply an unfair burden that they should not have to bear.

~Kimberly

Kimberly Carnevale is an author and award-winning motivational speaker/educator.  She is currently available for Nationwide bookings.
http://www.kimberlycarnevale.com/

Time keeps on slippin, slippin, slippin... But hey, at least I LOOK fine ;-) Brain injury as the invisible, silent epidemic

Hello, all.  Wow, so much time has lapsed since my last entry, I'm terribly sorry.  Again, I have the best intentions of keeping everything going, but brain injury dictates that I have a tunnel-vision focus, and can only concentrate on one thing (if I'm very lucky!) at a time.  The one thing has been trying desperately to get my business going to help support myself, and so, the blog has been neglected, I'm so sorry to say.

I'm swimming in the pool of cognitive dysfunction at the moment... as many of you with brain injury know, this is not a pleasant dip by any stretch of the imagination.

I had a post on our FB fan page the other day from a fellow survivor, relating how upset she gets when people in her life (who know full well she has a brain injury), continue to exclaim, "But you LOOK fine!" and how crestfallen she was afterwards.  I know exactly what she means...it happens to me all the time; and it hurts every time.  "Hurts?  Why would that be?" you might wonder. 

Well, look at it this way, when you relate to someone that you don't feel well and are struggling, when they respond in a way that says, "Well you LOOK fine," meaning, "you must not feel all THAT bad, because you LOOK fine", it implies that you are lying or trying to get sympathy from a non-existent or barely existent condition.  It hurts, because the symptoms that you really are feeling are so horrible that you don't relate them, and suffer in silence in a world that doesn't understand or accommodate. 

When we talk about brain injury, we're talking about your body's epicenter being injured.  If a main component in a computer went bad, you'd have all sorts of issues with the entire machine, right?  If your car's engine went bad, its a pretty good bet that the rest of the things aren't going to work well (if at all) either, right?  While the computer and the car wouldn't work well at all, it would continue to "look fine," even though its operater has learned full well that all is not fine at all.

 While its easy for us to imagine the devastation to any of these key components to a machine...its difficult for people to imagine the devastation of brain injury on a human body.  The brain controls everything: thinking, breathing, moving, blood flow, heart beat, vision, speech, memory, cognitive function...the list goes on and on...It should be fairly evident that many of the symptoms of brain injury would be invisible. 

I'm suffering today, and so I've sequestered myself in my apartment and don't plan to emerge until I'm feeling better.  This is mostly because the world is a very overwhelming place, and because I may "look fine," people may not understand my need to not stay and continue a conversation that I just can't, or misinterpret my anxiousness for wanting to get away from them, or not being able to understand what they are saying as me not paying close enough attention. 

Many people with brain injury find it easier to stay away from society than be subject to explainations that fall on deaf ears, attempts at making accommodations that others don't feel warranted, or just because its so hard to operate in a world that moves so utterly fast in dysfuction.

There are those who may express limitations, they may not be respected because the survivor was able to do something the day before, so why couldn't they do it again today?  Or, you look just fine, despite the survivor saying they are not doing well; so its hard to believe that they are suffering as much as they say they are.  It's so much easier to just hide from the world that doesn't understand.

In my own case, I'll be "off the grid" for several days. To most folks, I'll appear "normal" and "look fine", with no evidence of the struggle that I'd just faced...and so it would be difficult for them to grasp the gravity of the devastation of brain injury.

The one thing I pray that people get out of my story is education:  I pray they learn how to protect the only brain they have, that they learn how to help (and not hinder, even in a well-meaning attempt) their loved ones with brain injury, and will continue to help me spread my message of how vitally important is is to protect your body's epicenter at all times.    Don't pity me, learn from me; and take what you learn to help others.  Blessings to all the brains out there (injured and intact)!

Here's a link to an article that God gave me the ability to write a while back.  Brain injury associations around the world use it to give a glimpse into the survivor's world and what living with brain injury is like.  I pray that it gives those who would say, "But you LOOK fine" pause and provides an insight that perhaps would convince them that a little compassion would find its way to healing: http://www.kimberlycarnevale.com/But-you-LOOK-fine.html


~Kimberly
http://www.kimberlycarnevale.com/
http://www.canineability.com/

Brain injury---The silent epidemic of a condition lived in a "different" world

Prior to my accident, I lived in a world in which I felt that I truly belonged. I lived, not just struggled to exist as I do today. Its amazing how much brain injury changes everything. Simple things don’t exist anymore. Each daily task is a monumental challenge that for the most part, goes unnoticed because for the most part (at least in my case), brain injury is invisible.

Brain injury is widely known as the “silent epidemic.” I can totally relate to that, as it seems that though my world continues to cave in around me, no one notices, because outward appearances belie the silent hell I go through to keep up with a world I feel I no longer belong in.

I constantly feel out of synch, left behind, trying unsuccessfully to catch up to a world that left me behind 13 years ago. Confusion and forgetfulness reign supreme in my life these days.

When I get overwhelmed trying to “catch up,” I can’t get back to friends’ messages, respond to phone calls/emails, or even attempt to plan anything beyond the minute I’m currently in; as I try desperately to attend to the very moment's need.

People don’t see my struggles, and they find it difficult to relate. Friends get frustrated at my inability to respond in a manner that the normal world does, and when my silence accompanies my cognitive lapses/meltdowns; misunderstandings fly rampant as to reasons for my silence. I’ve had many friends’ feelings hurt, many angered, and many more have simply just walked away.

I have the very best of intentions to be a gift to society---instead of a burden. I have so many gifts that I want so very badly to share with the world, but it doesn't appear it wants them.  I shout into the wind to the world, trying so hard to "earn" my way through it--- but it can’t hear me, and my message gets muffled in the stampede of people, hurrying to getting where they’re going…and my voice is silenced. The hard truth is, no body cares about brain injury until it happens to them, or someone they love. 

Brain injury truly is the silent epidemic. I will, however, continue to shout from the mountaintops the amazing life lessons I've learned through this journey, and how important it is to take care of the only brain you have----even if no one's listening.
 
Blessings,
~Kimberly