SVF Client Stories

Laurie and Erica.

Seeing Is Believing

By | SVF Client Stories, Uncategorized | No Comments
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.

Jennifer Bernard and friend

A Special Space for Fun & Music

By | SVF Client Stories | No Comments
Tamika

Tamika Smith

Play a new instrument, Listen to music you have never heard, Learn how to read music, and Create a musical composition—all in an hour of fun.

After just 5 hours of lessons with Jennifer Bernard, you can create a song, play with 4 different instruments, learn ten new music genres, understand how to read music and improvise your own melody—or better yet build your own “Music ‘Prozac’ CD” for those times you want to feel happy, relax, or express yourself.

“Jennifer makes learning easy and fun. I was hesitant, not knowing what I might be getting myself into.   ‘Music exploration?’ Really what is that?  I wasn’t sure I could really learn something new with my impaired Executive Functions (such as impaired new learning, memory, and difficulty finding and saying words, as well as remembering instructions).  Jennifer was so eager to teach and passionate about music, my first lesson wasn’t intimidating, rather exciting.  With clear tasks for homework to keep me engaged without feeling overwhelmed and Jennifer’s positive encouragement, I looked forward to our one hour a week lessons—knowing I’d learn something interesting and have a positive time. Rehabilitation was sometimes hard and frustrating, but knowing I had a music lesson with Jennifer, made it easier to get up and get motivated, even when I felt pain,” said Tamika Smith, Jennifer’s first Small Victories’ student.

Jennifer Bernard and friend

Jennifer Bernard and friend

Jennifer plays one of the hardest instruments to learn, the oboe, which she has been playing for 23 years, since she was eleven years old.  Jennifer says she “really [enjoys] working with adults, expanding their musical horizons, and showing people that they can have fun with music and use it to relieve stress. Music brings me a lot of joy.”

Music Exploration is a time to explore different instruments, types of music, and new ways to express your emotions through the creation of music.  “Jennifer is so prepared to help and work at your own pace, in the areas you find most interesting.  I can’t wait to start playing piano and learning piano improvisation – all because she turned me onto music and encouraged me to keep trying and learning!” offered Tamika.

A professional oboist and teacher, Jennifer loves helping people realize they have a part in music regardless of their experience.  Besides playing the oboe at 11, she also explored piano and singing in the choir.  “I heard that the oboe and the French horn were the two hardest instruments to play, and since my sister was already playing the French horn, I, of course, chose the oboe!”

That desire to achieve excellence and have fun with music —combined with her fascination with how the brain learns, makes her a perfect fit with Small Victories.  One of Jennifer’s students is the daughter of Small Victories founders Derrick and Cindy Wright.  “I’ve worked with Hannah for six years.  We’ve had many conversations about music, learning and the brain – because of that connection and my interest in the psychology of learning, I began working with Small Victories.”

While discussing her music career, Jennifer describes her path to success.  “There was definitely a turning point when I moved to Austin for graduate school.  While working on my masters in music, I began picking up gigs around Texas and by the time I graduated, I had enough gigs to make a living doing what I’m most passionate about.”  It’s fascinating to teach music to adults – whether a formal class or through private lessons, according to Jennifer.  She currently has 15 oboe students and one music exploration and piano student.  It’s a wonder she has room to actually play music, but Jennifer is at the top of her game.  She is a member of the Victoria Symphony, Corpus Christi Symphony, Round Rock Symphony, and Laredo Philharmonic, and is a substitute musician for the Austin Symphony, Austin Opera, and Mid-Texas Symphony.  She comments, “it’s amazing to have a bunch of different puzzle pieces that create a whole picture.”

That statement sums-up the essence of Jennifer as a musician and teacher.  She’s buzzing with excitement and the joy of music; she’s dedicated and strives to excel; and mostly, she’s just a joy to be around as she brings all these different ideas together into a picture perfect musical piece.

Jennifer has a sincere interest in working with Small Victories students and hearing their stories, learning about their psychological struggles, and being a part of their creative successes.  “I see myself in my students.  I have left a session with a Small Victories student thinking I should take my own advice – not just learn a new piece of music but enjoy the journey; stop and smell the flowers along with way; be more compassionate with myself since making mistakes is a part of the learning process.” One student was off to the races, practicing daily, learning one new piano song after another – but Jennifer noticed how hard her student was on herself.  Together she and her student creatively thought of a new ways of learning – learning for fun and their own enjoyment versus rushing to get a piece of music completed to “perfection.”

“It is important to realize that I, as the teacher, am processing the whole experience with my student. I’m reminded of when I started learning music when I was a young girl, it was the anticipation to learn, the fun of hearing and doing something new and special. There is so much joy in music for me and I wanted people to experience that fun and joyful exploration,” said Jennifer.  In a typical music classroom, there is a hierarchy about learning –that desire for innate ‘talent’.  Whereas, Jennifer believes having fun with music builds a better learning environment and connection between the teacher and student.”

Jennifer came up with the idea of Play, Listen, Learn, Create as a way of organizing a big “pile of music mess!”  She asked herself how she would be able to teach all these disparate things, but still have structure that felt fun and comfortable.  As one student mentioned, “it was a wonderful way to try a lot of new musical ideas/concepts, and still feel like I was enjoying the process.  No lesson was the same, and I got a little bit of a lot of different musical experiences.”

Jennifer is drawn to the idea of showing people there is a place in music that they can own for themselves.  She said one of her most valuable personal challenges is to create a safe place where people can be joyful about something.  To achieve this, “I need a large dose of compassion for myself and others.  This compassion builds a space where mistakes are okay and you aren’t judged.  We need to learn from our mistakes without shame – connecting with compassion over our shared humanity.”

Small Victories is about finding your creative self, and sharing a safe space, being surrounded by compassionate people, and finding your new normal – these concepts are the cornerstone of Jennifer Bernard’s teaching and musical philosophies.  So make time to play something new, learn something interesting, listen to beautiful music, and create a new path for your own creativity by exploring music with Jennifer Bernard and Small Victories.

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.

Tamika

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

By | SVF Client Stories, Uncategorized | No Comments
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.

IMG_2123

Esdras’s Story of Recovery

By | SVF Client Stories | No Comments

Many of you in the Austin area will remember this story about Esdras from last year.  I know I paid attention, because we’re familiar with brain injury in my house—and I wondered at the time whether a “crushing” injury to the head would be survivable for this person.

Visualize “crushing injury to the head” just for a moment… http://kxan.com/2014/04/09/man-hospitalized-in-construction-site-elevator-pin-in/

His name is Esdras, and not only did he survive, but he works hard every minute of every day to get back to a normal life for himself and his family.

Before his injury, his job was very physically demanding.  It took strength, good vision, and attention to detail to work on tall buildings installing glass.

Now, with half of his vision gone, significant cognitive changes, and the lingering effects of numerous physical challenges, Esdras has to learn to make a new life for himself.  And that’s hard.  He wants to be able to operate independently, to support his family again, to be able to help his children with their homework.

We are so fortunate at Small Victories Foundation to get to work with Esdras.  You see, he is learning a new skill—drawing.  And he’s getting pretty darn good at it, too.

Together with his instructor Laurie, he works to understand rules of perspective, techniques of shading and scale, and the many other NEW things he will have to learn to be an artist.  He approaches his drawing time like he approaches every other hard thing that he has to do–with resolve.  Is it perfection? No, it’s beautifully imperfect as it should be.

While other people in the community might look at Esdras as a disabled person, his teacher sees him as a whole person in student form, ready to learn—even if it takes extra time, or different techniques.  You will hear more about Esdras and others in the coming weeks, months, and years—because in central Texas alone there are thousands of folks who live with traumatic brain injury, and the number grows.

At Small Victories Foundation, we know that through his art, Esdras finds a small mission and sense of purpose, a little escape from the realities of his current limitations, and some happiness.  And that’s OUR mission.

Erica

Erica’s Story

By | SVF Client Stories | No Comments

Please read Erica’s story…she was a senior in high school in 2002 when she suffered a traumatic brain injury in a car crash.  She works hard every day to continue to regain strength, skills and adapt to life with a TBI.  Erica is now taking drawing lessons with an instructor who is patiently working with her to find ways to make (re)learning this art form enjoyable and productive!  If you would like to support Erica and others, please consider a donation to SVF today.

“I was a senior in high school when I acquired a brain injury. Before this I was an athlete, I wouldn’t call myself an artist, but I did like to draw, and I was just very free spirited, I was an Artisan so I just went with it in life. I didn’t really have any definite plans, but I figured that one day I would make it to be a professional wrestler……yes, we’re talking WWE!

It’s a little hard to think back and remember what I liked to do for fun, I guess it’s because things are so different for me now. A fun day or night for me would be just hanging out with friends, going to the arcade downtown to play video games, or my friends and I would just cruise around downtown. Like I said, I was very free spirited so things changed for me from one moment to the next, there was never any definite plans.

I was in a car accident December 22, 2002. It was really bad. My car hit a tree and flipped. I was a passenger and I didn’t have an air bag so I just went everywhere. When my car hit the tree I went forward then back really hart. My head hit the back of the seat and I think that’s how I lost the good part of my vision. Then we flipped and the top of my head hit the top of my car forcing my head to go down and my neck broke, C1-C2. It was really bad for me. The doctors thought if I did make it through this I wouldn’t be able to walk or talk again, but you know doctors always have to relay the worst possible scenario. I had some strokes, during or after the accident, they didn’t really know when exactly or how many.

I was in the hospital for three months; I think I was only coherent for the third month. I was in a medically induced coma, but I’m not sure how long I was in one. Being in the hospital, there was always something wrong with me. It seemed like I could never get better. I think I couldn’t wake up because I had water in my brain. They had to put a shunt in my head to drain the water, Finally, after they put the shunt in I was coherent again, but shortly thereafter I developed blood clots. At first the doctors didn’t know what was wrong with me. Soon after I begun to vomit, everything I tried to eat, I would vomit. It got so bad, I stopped eating, but even with no food in my tummy, I would still vomit, but only bile would extract. That was all that was left. My weight dropped close to one hundred pounds. Also because of the blood clots, I would get these crippling headaches, when I say crippling; I mean it felt like getting hit in the head repeatedly with a sledge hammer. I can honestly say I have never known pain like that.

I went into rehab after that third month. I guess I did rehab for a year, it’s been so long I don’t even remember. Of course I was in a wheel chair, but by the time I was discharged I didn’t use anything to walk.

I still have left arm issues, it still doesn’t want to do much and I have drop foot on my left leg, but I use the Bioness brace that helps a bunch with my walking. Still, I’ve never been as strong as I once was. My right arm that does work isn’t very strong. I can barely pick my arm up to hold out in front of me, I haven’t been able to get it to go up past my head since before the accident, and I do try to work it out with weights.

I was doing really good when I got out. Sure I would have to do some more therapy when I found myself going back, but I could always get back up to the best I could be with a little more therapy. A few years ago something happened that set me way back. I couldn’t really tell you what it was, I don’t even know. I’ll try to paint a picture of how good I was doing. You know in cartoons when you see one of the characters slip on a banana peel? Yes, that did happen to me, but I never hit the floor. Somehow I caught myself. Once I stood myself up I bent over to pick up that dang banana peal and threw it away. Another thing……well, we have wooden floors and I use to be able to just walk around in my socks, without anything, all by myself. So now I have to have shoes on, which I do not like. I still get around ok now, but when I’m by myself I like to have my little cart. When my parents are home I try to walk on my own, but I still need that line of sight thing. I would love to be able to walk around on my own again, with nothing but my own two legs to steady me, but……I went to CORE healthcare for about two and a half months most recently. I was almost back to walking around with nothing again, but my insurance denied me the time to stay until the end of the year, even though all my therapists were very impressed with all the progress I had already made. I’m still hoping to get back there, but I just really want to move on with my life. I just feel like I’ve been stuck doing the same thing for so long, I just want to live my life now.

The first time I went to CORE was in 2007. I was there for six months. Well going back to my free spirit, I got bored being at home all day every day and wanted something to do. I went to DARS and they just wanted to throw me straight into ACC. I am newly blind, have no blind training, and they wanted to put me in college full time. yeah, that was a no. so then I went to Criss Cole, school for the blind to see how their program was. Well it turns out that I would have to live there while they were giving me blind training. I’m disabled, never been away from home and my mamma, and they wanted me to just move in. yup that was another no. so, back to DARS I went. Thankfully this time they gave me a really helpful counselor. We told her the situation and she recommended going to CORE Health Care.

Core is an inpatient care facility for those that are brain injured. I would get to live there in my own little room and receive some type of therapy daily. Yes, this includes occupational, physical, and speech therapy, but they also had everyday life kind of therapy. They also had staff there around the clock, so there was always someone around. CORE was exactly the intense type of therapy I needed. When I left CORE I walked with nothing but my sited cane. I was ready to go to Criss Cole!

By the time I got to Criss Cole (CCRC)I no longer needed to stay in their facilities, so I lived at home and traveled their daily. At CCRC its mandatory that if you are not fully blind you must use a blindfold. Now, with my brain injury it is literally impossible for me to walk In the dark, so at CORE they gave me a walker to use so I could feel safer. Eventually everyone decided that it just wasn’t practical for me to use the blindfold so I was excused from wearing one. I still needed to use the walker there though, it turns out blind folks just walk around full speed not really knowing what’s in front of them……I was tripped, bumped into, and had head on collisions, all of which would have Shirley had bad consequences if I had not had the walker.

The more I used the walker the more I started depending on it. I could feel myself deteriorating. At first when I got there I would leave my walker there and come home with my sited cane, but then I needed the single tip cane. Then I broke my ankle. I used a wheel chair for a few days, but when I could put pressure on my leg without pain I just went with the walker, and this was all day every day.

I started at Austin Community College in 2009 and I continued using the walker there too. I was still at CCRC when I started ACC, but it was just for my first semester. But still, I was very busy for those five years in school, so busy that I couldn’t keep up with my physical health. I did do some therapy in-between, but I was just so busy and on the go all the time that I couldn’t take the right time to focus on all my physical needs.

I graduated ACC May 2014 with a degree in Hospitality specializing in Meeting and Event Planning. I almost didn’t, not because my grades or anything, I had a 3.8 GPA, but because I had a hard time finding an internship. It seemed that nobody wanted to have a visually impaired disabled girl interning with them, but of course they won’t say that. I had to drop my internship class that semester. I eventually got an internship, but I had to go through family and my doctor’s contacts.

My parents have always been here for me. I guess they kind of had to be, but my family has been very supportive of me. I’ve learned a crappy, some might say a good thing about life…… Always, life goes on. If you’re going through something bad, sad, painful, life changing……life doesn’t wait for you to be ok again, it just keeps going. People move on, everybody moves on with their lives, with or without you. I had my best friends be here for me, but eventually they moved on. Everyone got married and had kids. Those that aren’t married yet are in serious relationships. I know they still care and think about me, but everybody moves on. My most recent friend, He was great! He was my friend, my best friend for the past year and a half, it was never anything more, we were just friends. He took me out and showed me what Austin was all about. Music, Live music! It was great and I actually felt like the old Erica, my 17 year old self, well, me but more mature. My parents I think were the most grateful for him. But everybody moves on, he met a girl and fell in love with her, but I would still say he made a big impact in my life and my recovery.

My life now, well I guess it’s kind of the same, I mean I’m still kind of stuck. I’ve just been here, like this for so long now, you can say that I’m used to it. I mean I have tried moving on, but there’s always some obstacle in the way. I did therapy and got myself going good, but then I had set backs. I try to learn how to live with my vision and disabilities, I graduate from ACC with a degree, but no one will hire me because I am disabled.

With Small Victories I’m looking forward to seeing if I still have some sort of artist inside of me. I’ve already done some paintings and my family has been very impressed with the work I’ve done. I’m just looking forward to hopefully figuring out how to make something beautiful that makes sense with the vision I have. I’m also hoping to take dancing lessons. One thing I miss doing is dance. I grew up cumbia dancing and I was very good at it! I still try dancing every now and then, but I just don’t move like I use to, but hopefully with some lessons I can start moving a little better. Also I’m thinking dancing could help with my walking and balance issues.

I always wanted to do something awesome with my life and I don’t mind sharing my story. I just want everybody to know how hard it really is when you have a disability. It’s doubly harder for me and people like me that have multiple disabilities. I’m one of the ones that works so hard to try to have a normal life, I got blind training, I went to school and got a degree, and I try to get my physical health back up to good, but insurance and then between DARS and DBS, no one really knows what to do with me. I still hope that one day I might have a normal, or at least close to normal life like everybody else, but like I said, I’m just tired of being stuck and I want to move on. With Small Victories, it’s something new, something else I can work towards.”

photo 5