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Laurie and Erica.

Seeing Is Believing

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Tamika

Tamika Smith

After a vehicle collision in 2002, Erica Gonzalez was in the hospital for three months, most of which she can’t remember.  Her traumatic brain injury (TBI) was to the back of her head and resulted in immediate physical and visual changes with the onset of multiple strokes.

It was hard, the physical therapy to help her walk—the left side of her body was paralyzed and she needed to wear a knee brace called an Ankle Foot Orthotic (AFO).  This on top of the loss of most of her vision was especially difficult.  “I struggled a long time with coming to terms and accepting my visual impairment.”  Erica and her family sought out doctors to help regain her vision, only to find that these impairments would be permanent.

“I’m not good at being blind, but I get by,” Erica says.  Since she can’t be fully blind, Erica is caught between two worlds —the seeing world and the blind world.  It also means that she has to rely on her minimal vision to walk and move forward in her life. For example, in the blind world, someone is able to rely heavily on their other senses, such as touch, sound, etc.  Living in between worlds means that reading books or mastering Braille may both be challenges.  It also means she might not have access to some of the technology and/or support systems usually present.

Erica says she’s come to accept her physical and visual impairments, and, of course she’s been living with them for thirteen years since the accident.  Unfortunately, her mobility has deteriorated since her first rehabilitative sessions, resulting in her need for a wheeled-walker, which she handles like a pro-driver!  However, she is now able to use a Bio Ness knee brace which stimulates the part of the muscle that lifts her foot, so instead of dragging her leg, the Bio Ness helps lift the leg for a better step and also allows Erica to wear almost any shoe (such as sandals – something wonderful in this Texas heat).  “No flip flops though, darn it!” she laughs.

Erica does need more time to get places and extra help at home through the support of her family (like so many others who have a TBI).  She also receives services from Meals on Wheels and has been on a housing waiting list since 2009 with the Department of Aging and Disability Services (DADS).  She is also involved with the National Federation for the Blind (NFB) and Small Victories to name a few support groups.

When we met for our interview, I picked Erica up at her home and we went to a nearby Starbucks – she wanted an opportunity to get out of the house for a while and chat over coffee.  It was such a wonderful experience.  Erica is a little shy and soft-spoken, but so open and positive about life and where she is headed for the future.  Through Small Victories, Erica received a scholarship for drawing lessons.  “I love drawing because it’s pretty!” she expresses with a big smile and laughter.  She begins showing me all her amazing art.  I truly can’t believe how remarkable each piece is —wow seeing is believing!

Laurie Mann, Erica’s drawing teacher has guided Erica to use art “chalk” (if you will), which are called Pastels.  The colors are bright, vivid, and so happy and expressive.  “Laurie was able to find a tool I could see with my visual impairment.  While I can’t draw fine details, such as a face, I was able to use ‘puffy paint,’

which is textured paint I can touch and feel and then mimic in my drawing.”

Laurie and Erica.

Laurie and Erica.

It was impressive to see how Erica saw an internet picture that she wanted to draw in her art class, and used her pastels to reach the perfect effect (Picture 1).  They are so similar she might one day—as she continues her drawing experience—take on a career as one of the artists that copy masterpieces for people’s homes and galleries.

It shows how limited our understanding of our senses are today.  Some people might never have imagined a visually impaired and partially paralyzed person could take on the intimidating challenge of drawing, painting, and sketching. Erica makes it look so easy!

Small Victories has been able to support Erica in her quest for self-sustainment through creativity and the love of beautiful things.  Of course for Erica, “having others see my paintings and share their awe and enthusiasm feels wonderful.”  As a self-professed perfectionist, Erica is most happy, “when I have a finished painting.”  She enjoys the process of drawing, however, knowing that final piece is completed is the real drive behind her determination to work hard and achieve something beautiful, or as Erica likes to say “pretty.”

Picture 1

Picture 1

Even though Erica can escape in her love of art, there are days that are more difficult.  Yesterday she fell and was at home alone.  Of course that pesky cell phone was on the table not in her pocket as usual.  She waited for hours until Meals for Wheels arrived and called her mother to come help.  Each day can be fragile when you have a TBI, especially combined with other physical or intellectual injuries—it’s easy to understand that someone with these injuries never knows if it will be a good day or a bad day.

It is astounding to see how quickly Erica bounced back and was ready to meet the following day.  Erica said, “it’s great to have something to keep [you] busy and focused.  Each day is better when you are not sitting around just thinking about yourself.”  Her drawing is just one of the ways she finds joy and the ability to be active and interact with other people.  “I have a feeling of accomplishment when people see and like my art and provide positive feedback,“ Erica states.

Before Erica’s crippling TBI and accident, she was a senior in high school; finishing her last couple of classes during her recovery.  In 2009 she had the tools from her stint with the Chris Cole Rehabilitation Center (CCRC) to return to school. “Well, I was sort of bored, so I went back to school in 2009 and graduated in 2014 with an Associate’s degree in hospitality specializing in meeting and event planning,” stated Erica.  Now through volunteering with the NFB and Small Victories, she hopes to begin helping organize events and work with social media—something that’s right in line with her career choice.

Picture 2

Picture 2

Combining her love of art and her degree, with the support of foundations like Small Victories and NFB, she’s been able to create a new life and is reaching toward her New Normal.  “I’m not there yet [her new normal], but I’m positive about the future. I can now see myself living on my own, in my own place!” says Erica.   And, the rest of us see her finding her place between the vision world and blind world where she’s found her “new normal world”—a place just for her to thrive with lots of pretty things, and family and friends to keep her busy and focused on the future.

Erica has a lot of spirit and commitment toward gaining her dream.  Like her artwork—her small dog, a Chihuahua, her volunteering, and her drawing are just a few of the stepping stones to seeing her future in vivid color.  Seeing is believing — so check out her vivid art work in this article or on the Small Victories Foundation Facebook page.   Erica loves to hear from others about her work, so your encouragement is welcome!

SVF is pleased to feature the very talented writer Tamika Smith. Tamika is a former Vice President of Communications/Marketing and a current TBI survivor and piano student searching for her new “normal” post-therapy.

Cindy Wright

Never Leave a Man Behind

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Cindy Wright

Cindy Wright

Eight years ago my husband, Derrick, got his brains blown out in Baghdad, Iraq.  Trained as an Army Ranger, he went from being a fit, focused, and capable protector of US diplomats, to a fragile and comatose invalid with his mouth agape and his life hanging by a thread.

I was notified and kept up to date by his employer, who made plans to send me to Landstuhl, Germany to meet Derrick if he could be stabilized enough to evacuate from the field hospital in Iraq.  Needless to say, our lives changed forever that day in April of 2007.  He survived, I flew to Germany to be at his bedside, and our TBI journey together officially began.

I will skip all of the gory medical details—and there are many—in order to tell you a different part of this story, because it’s pretty amazing.  You see, once I called and told a few close friends what I knew about Derrick’s condition, there was launched an immediate and constant salvo of every kind of aid you can imagine as we began our battle with TBI.  One friend organized meals that were delivered each day, several women volunteered to become surrogate mothers to my children, a group of ROTC students moved furniture back into the house we had just put on the market the day before, a rescue ranch offered to take our dog in while I went overseas, folks prayed, mowed my grass, washed our laundry, sent my kids to summer camp, and baked me a birthday cake, among many, many other things.  And that was just in the beginning.

Derrick’s former West Point classmates, our employers, and our church and school friends organized work crews and were a constant source of comfort.  In fact, there was so much support that I was able to focus solely on caring for Derrick.  I stayed in Germany for a few weeks, with representatives of Derrick’s company taking care of any need I had.  The only thing I had to do was take an occasional shower, brush my teeth, and sleep.  The rest of the time I was icing him down, fluffing his pillow, invoking God and guardian angels, giving him a bath, staring at and obsessing over the beeping machines, giving him a shave, reading to him, or lying down next to him.

Once he flew back to the states, the support continued and I was able to stay with Derrick in ICU every day, all day.  Then, when inpatient rehab finally came, I again had the luxury of being able to advocate for him all day, each day.  I had to leave my job indefinitely, not knowing if I would ever be able to go back, but my colleagues still offered their care and support and spearheaded a campaign to help make necessary modifications to our house so Derrick could eventually come home to a safe place.

I’ve been telling this story for several paragraphs now, and I’m sure you get the idea.  Through all of it—the ICU, inpatient rehab, outpatient rehab, day programs, miscellaneous therapy experiments, and until this very day–we still have folks (some of whom I have never met) pulling for us. This type of story is not unique, but it is unusual and extraordinary.

No one can experience that kind of intervention and remain unchanged.  For years, we have searched for a way to pay it back, so that the army of good people who gave so much of themselves would know how much we appreciate what they have done.  We finally figured it out last year, but more on that later…

Meanwhile, like most families living with TBI, we carry on and experiment with any and everything that may help those synapses and neurons communicate.  The running joke in our family is that everything is therapy, and Derrick (mostly) happily goes along with our suggestions and still maintains his adventurous spirit.  We got him to start writing, even though he struggles with the ability to read.  The writing eventually developed into his Facebook blog (Small Victories), where he celebrates life and accomplishment, no matter how insignificant it may seem to the casual observer. Another one of those adventures was taking pottery class.  As it turns out, he absolutely loves it.  It helps him calm his tremors and focus his mind, and he doesn’t have to compare his new skill to his former, pre-injured self.  No expectation, except to enjoy the act of creation and sharing.  Freedom…

Now, back to paying it all back, which I finally understand can’t actually be done.  It’s just too much.  That being said, instead of feeling defeated I know that we CAN pass on the legacy of comfort and support we received to someone else.  So together, with an awesome bunch of people, we formed the Small Victories Foundation.  SVF recognizes several basic things: 1.  Eventually for folks with TBI, the therapy ends.  Insurance runs out, the patient is declared at maximum medical improvement, and life goes on whether or not the patient is ready or able to participate in the “real” world.   2.  No matter what physical or cognitive state a person is in, when he/she can experience learning something new, happiness results, and 3.  Music, art, and movement are good for the soul.  Understanding and believing these things, together with observing Derrick’s writing and pottery achievements, we were led to create an organization aimed solely at providing arts experiences for TBI survivors. It’s a small but definite victory to be able to help in this way.

After a year, we are now a 501(c)(3) non-profit organization, and we have about 20 clients in the Austin metro area learning all sorts of different cool things:  piano, pottery, steel drums, hand drumming, music appreciation, drawing, pottery, ballet, guitar…the list goes on.  The best part is that our clients don’t really have to please anyone but themselves. The instructors we have partnered with are patient, loving, out-of-the-box thinkers who are really great at improvising solutions for the different learning styles and abilities they encounter.  The physicians and organizations who have referred clients to us appreciate the fact that once a patient is discharged, they need to use the momentum created through their formal rehabilitation to continue to improve, refine, and create their own new “normal”.  All of these perspectives come together in an alliance to combat in our small way the potential isolation and depression that can come from a life changing TBI.  We don’t want anyone left behind.

Reprinted from the summer issue of The Texas Brain Injury Alliance newsletter.  To read the complete issue, visit http://www.texasbia.org/images/2015-Summer-Newsletter.pdf

Tamika

The Ghost in My Brain: When You Can’t Trust What Your Brain Tells You

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Tamika

Tamika Smith

I’ve never had to write about myself.  I find it much easier to tell the story of others – being real and compassionate is easy with others. You see the artistic talent, the progress, and the challenges.  I’m much harder on myself and I don’t see the positive changes, only the challenges.

So where to start? Maybe the basics….my name is Tamika Smith.  I have had several traumatic brain injuries throughout my life.  The most notable of those injuries, the subdural hematoma, I received in a 4 car pile-up during the infamous Washington, DC traffic in 2000-2001.  I woke from my surgery, seemingly perfect….talking, answering questions, and able to work from home and still maintain my high-profile job position.  I even went back to work, after two weeks – weird hair and all (they only shaved part of my head, lovely really).  But off I went, as if nothing had happened.  Not knowing much about signs of trauma – over the years — I struggled, sensing something was just off or wrong.  I never associated my TBI with any of the difficulties I was enduring in my daily life.  Now I know those multiple clumsy falls, where I gained several concussions over the next few years, weren’t just me not being graceful or “moving too fast”, or “not paying attention”.

I chalked my temperament changes up to stress, my Attention Deficit Disorder (ADD), or Post Traumatic Stress (PTSD), and “behavioral issues”.  After three concussions where I lost consciousness, struggling to maintain my senior job roles and responsibilities, intense pressure to perform at the level of my colleagues, I was unprepared for a layoff during the big economic downturn in 2010.  Being laid off, unable to maintain my financial freedom through independent consulting jobs, I was faced with making some of the hardest decisions in my life. I used all my savings, my IRA, and sent out 100s of resumes.  Unfortunately, these two years of self-sustainment led to the loss of my home and my job; needing to move away from my friends; and at 45 moving in with my mother – till things “got better” and “back to normal” I told myself.  I’d soon find out there was no “back” to normal.

My mother, who recently retired from the Department of Rehabilitative Services (DARS) and took up counselling full-time, did some research and thought a DARS program for people with TBIs might be a source of help to get back on my feet, gain some new skills, and re-start my search for some type of job.    Through DARS I was able to participate in a program called Rehab Without Walls, an intensive, at-home rehabilitation program to assess my TBI, current abilities, and potential vocational options.

For the first time, since 2000, I felt validated that the challenges I was facing had a name and a source.  Learning:  I had vestibular issues (no wonder I tripped over the dog and hit my head on the tub – twice!!); peripheral vision issues; daily migraines; and the challenges I needed to overcome with impaired Executive Functioning.

Executive function impairments can occur when you have trauma to the frontal and temporal lobe(s). They include, difficulty filtering your communications with others.  The “switch”, if you will, that helps filter, monitor, and modulate my communication, language or writing abilities isn’t working properly.  Additionally, you can have impairments in planning, new learning, word finding, processing of information, attention, etc.  There isn’t any visible physical damage, no scar on my face, no motor skill issues, no missing limb, just some of the many indicators that someone has been through a trauma. I call my TBI the Ghost In My Brain – my brain doesn’t always tell me the truth about my environment, how and what I’m communicating, or why I feel the way I do sometimes.  How do others trust you, if you can’t trust yourself? It’s an inner challenge that isn’t immediately noticed by others.

This means people make assumptions about what I should and shouldn’t be able to do or think.  I fell under the radar, learning positive and negative coping skills to hide my perceived short-comings.  Such as spending hours longer than my peers to accomplish the same tasks; receiving constructive criticism for “behavioral” and “interpersonal” issues; hearing that I just needed to change certain things; and try harder to do better.  If someone asked what causes me the most emotional pain, I’d have to say:   being perceived as a high-functioning adult, because nothing “shows”.  The assumptions made by people and strangers I interact with on a daily basis; and leaving situations where I might be labeled as “difficult”, not making sense, “ always talking and not getting to the point”, or just plain “not good with people”.

Ironically, communication was my college degree and my career.  As Vice President of Communications & Marketing, those executive functions were in play every day, working long hours, dealing with recalcitrant people, crisis management, editing, and writing as if these talents were just a part of who I was as a person.  I could organize a report/story, outline key factors, and publish press releases, with speed and accuracy that sometimes even surprised me.  I even led teams of highly skilled people at the top of their game. But that changed subtly, not all in one day like some TBIs, but over a long period of time, exacerbated by multiple head traumas. So after years of seemingly small changes, difficult challenges, and multiple job layoffs, the very skills I gained over 20 years, become the impairments I now had to live with going forward.

With long-term coping mechanisms to compensate for what I thought were my “personal failings — in February of this year — I finally was able to begin learning tools and skills to assist with managing my TBI impairments through rehabilitation.  This didn’t mean, I was “fixed”, or that my challenges just disappeared.  It did mean I could begin to heal emotionally – recognizing that the Ghost was now a part of my future.

Ironically, one of my Rehab Without Walls therapist was also a Board member of Small Victories.  She thought having something joyful in my life would go a long way towards my healing and coping.  She connected me with the Small Victories foundation and an opportunity to find some relief (more like some fun and enjoyment) in my life.

Of course, I didn’t think that at first.  Personally, I was a little intimidated.  I had no artistic abilities — I draw stick figures, stumble over my own two feet, can’t memorize anything, and have challenges listening and concentrating on complex tasks.

Thankfully, since I had no idea what I could do, Cindy Wright recommended I work with Jennifer in “music exploration” till I found a good fit.  “What the heck is music exploration?” It sounded like taking a musical history class – “Where was this going, and how will I cope with another challenge?”  I thought. So my negative self-talk began again.

Within a week, Cindy and Jennifer arrived at my house all excited and with a listening ear (remember my communication skills are impaired – so I probably babbled for 30 minutes before letting them even start) – my nervousness with meeting someone new, being asked to learn something new, and thinking I might be compared to others was nerve-wracking.  “They teach talented people, right?” However, by the end of our meeting their enthusiasm made me take a deep breath and leap.

Well it seemed like a big leap to me at the beginning – “What about my memory impairments?, my temperament challenges — “How is this going to work?” my brain chattered back at me.

However, Jennifer was so thrilled to teach me that it was hard not be excited and filled with anticipation.  We scheduled our first appointment.

Jennifer was so prepared that she had even created a folder with my name on it saying “Play, Listen, Learn, Create”.  With an absence of other adjectives, I’ll say she seemed child-like in her enthusiasm each time I learned something new, or finished a task, that soon I began to look forward to my interaction with someone new and my ability to do something creative.  I’ve always thought of creativity as an innate talent – something you have or you don’t.

To my surprise, and Jennifer’s delight (yes we danced around the piano with my puppy in tow – silly I know), in four lessons, I’d played four instruments and a duet on the piano; created my own music (albeit was with an oatmeal and cereal containers and spoons); learned what instruments I like and which ones I didn’t; and listened to the sounds of different types of music.  Of course it was all very basic, but when others validate you as a person and you can find something to do by yourself that brings some relief to the isolation and happiness, it makes such a big difference.

I was scared and worried during my first meeting and first lesson. And I certainly wasn’t Mozart.  However, I did have a new vigor for the future weeks ahead and learning something new.  Even my family noted my different temperament, how I seemed more relaxed, and smiled more.  Now that’s a vote of confidence when you feel like you’ve failed at the things that matter.

Ultimately, I chose piano!  I couldn’t imagine learning without Jennifer, her teaching was a part of what I looked forward to – so with my rented electronic piano from Small Victories (yeah!) and weekly lessons from Jennifer, I can now say I’ve memorized my first piano song – and one I love hearing (though my mother may be tired of hearing me practice it over and over again).  I feel so accomplished and yes, a little bit talented!

I heard Derrick Wright say, after numerous years, he found his “New Normal”.  Unfortunately, I’m still in the grieving stages.  I’m still grieving the Me I lost; feeling the anger and depression,  thinking I can’t seem to fit-in anywhere; and sensing that I make people uncomfortable or they just don’t like being around me.

I have, however, accepted that these feelings are typical of survivors of TBIs, and will dissipate in time with help from friends and family.  So I haven’t quite reached my New Normal, but I’m hopeful– through Small Victories — to find some joy in life and then continue with my search for MY New Normal, whatever that might be.  My Ghost and I will try to share this new side of life.

Opportunities

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Derrick Wright

I recently celebrated the anniversary of the attack in Iraq that left me “permanently and totally disabled.” Someone commented that they were not sure whether to be happy about my celebration or not… To the casual observer it might be difficult to understand, but I was extremely happy about it. Every day is a victory as far as I’m concerned, not just because I survived thatday, but because of the things that have happened as a result. I have developed a perspective that would not have been possible before. I have developed and/or strengthened relationships in ways that were not possible before, either. It is incredible, and I owe it to the opportunity that God sent my way. 

The simplistic view is, “you have to take the good with the bad,” but it is very true. You often have to do a lot of searching to find it, but it is there. As a result, I don’t celebrate the event. Rather, I celebrate the outcomes as a result of the event. When you think back on painful or traumatic events in your life, I am sure you can find them as well.

Half Full

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Half Full

I was recently on the bus, and a young family got on at the bus stop. It was a man, a woman and a baby. They were on their way to a doctor’s appointment. I overheard the woman talking to someone at the doctor’s office, and she was explaining how they had to take three different buses to get there, and it would take them about an hour-and-a-half. I felt bad for them, because I realized that it would be a very difficult journey for them. I thanked God that I was not in their shoes.

I say it all the time, but how often do I REALLY recognize how fortunate I am, regardless of my circumstances? I do not see well, but I can see. I cannot feel the right side of my body, but I can feel some of it. I cannot hear everything, but I can still hear some. I cannot understand a lot of what happens around me, but I can understand very simple things. Even though it is not what I used to do, I have a job… I have a loving and supportive family. I have wonderful friends. Yeah, I am blessed.

So here’s my point. Is my glass half full or half empty? It would be very easy for me to feel sorry for myself, and think that my glass is half empty, but I have decided not to. There is always someone who has more troubles than me, and for that I am eternally grateful. The family getting on the bus to take their baby to the doctor’s office may not feel that their situation is bad because they have a different perspective. That is their life, and they understand and accept it. They may be thankful for the fact that they have a good doctor, that they have a beautiful baby, and that there is a good transportation system available to them… At the same time, they may feel sorry for the guy with the eye patch on the bus. Their glass may be half-full just like mine is. Victory.