Uncategorized

Andrew’s Story

By | Uncategorized | No Comments

Please consider donating to Small Victories Foundation to support survivors like Andrew Green, who wanted to share his story:

“The experiences I have had thanks to Small Victories have been instrumental in maintaining and improving my quality of life since I was discharged from Rehab Without Walls. I loved how seamless the process was to find an instructor for my voice lessons. The fact that I’m able to still engage regularly with the arts has been wonderful.

I was an arts professional prior to my brain injury and I definitely felt a little left out of a major part of my life not being able to engage and collaborate with my old colleagues, many of whom are close enough to be practically family. Having the opportunity to engage the musical part of my brain has done wonders to return me to a feeling of stasis after the chaos of attempting to relearn how to “function” with this level of mobility and cognition.

Even though I don’t have as much talent or passion for singing as I did for Violin playing, being able to use the knowledge I gathered in my decades as a musician is immeasurably beneficial, especially now that we’re all trapped at home sheltering ourselves from coronavirus. Having a weekly appointment to get out of the house to go make music is the best therapy I can imagine and I am supremely grateful to Small Victories for giving me this opportunity. Please let me know if there’s anything I can do for your wonderful organization and thank you from the bottom of my heart for everything.”

A Note from Greg

By | Uncategorized | No Comments
Greg at his computerFrom our participant, Greg, who is a star member of his online music group:
“Hi My name is Greg Silver. I am 49 years old and live in Austin, Tx. I have had a passionate love of music since I was very young and for several years had a music blog. Three years ago, I was told by Lindsey Heath (who works in Austin) about an online music class sponsored by Small Victories called Beyond Hi C. It has been wonderful. On Friday morning, I connect with other members of the group using ZOOM to visit and to play wonderful music and sing. The moderator is Kiersten Kanaster. I have a great time – it never fails to lift my spirits and make me feel great.”

Meet Sam!

By | Uncategorized | No Comments

Sam drawing a dogMeet our participant Sam Perry! Sam is a survivor who is taking drawing lessons through Small Victories Foundation. His classes give him a creative outlet and opportunity for social engagement during these times where social interactions are so limited. He is very talented and has made great progress in his artistic endeavors!

Sam in drawing lesson

Sam and teacher

Welcome, Mark!

By | Uncategorized | No Comments

Please join us in welcoming Mark, our new Communications Director! During times of COVID, personal connections and communication seem to be more important than ever. Mark is now calling our participants regularly to check in, chat a bit, and make sure their needs are being met. He is making sure all participants know about the variety of safe class options we offer, including virtual lessons. Mark has the inside experience as he is a survivor taking guitar lessons with his awesome teacher, Trevor!

The Gift of Hope

By | Uncategorized | No Comments

 

Kris McCoy

Kris McCoy

I would like to spare a few of your seconds by thanking you the reader for taking the time to pay attention to what I am about to express to you. My name is Kris McCoy and what you are not aware of is the fact that I look like your average everyday guy walking down the street. The truth of the matter is that once you get within 100 feet of me you start to notice I am quite unique. I am writing this article with the usage of both of my hands as well as the use of all my phalanges. I have overcome in the impossible. With all odds stacked against me I have been given the most precious gift of all: An opportunity to give hope on this Giving Tuesday.

The gift to give is something not many can actual say they do anymore. I hope to encourage you to give openly and willingly once you have heard a little bit about what giving can do for people who are trying to overcome things that most would rather give up and walk away from. So, without further ado, here is a little bit about me that you might not otherwise know unless you have meet me. On December 10, 2016 was a normal day like any other except I was visiting with my sister our dad who lived in Yukon, Pa at the time. I took my little brother to Dunkin Donuts and grabbed the entire family some yummy goodness. Once we got home, I just was such in a rush to ride the four-wheeler I forgot about the donuts. Everything was great when I went riding the trail my dad mapped out for me the three times prior, however on this fourth time it was not the same. This fourth time out on the trail would change my life forever. I woke up on December 18, 2016 from my recollection and that’s when the nightmare became a reality. My mouth was wired shut I had a trachea in my throat so I could breathe and a stomach tube that was feeding me nutrients. The harsh reality that the horrible terrifying devastating attack and assault really did happen. I was unable to move, speak, feel, smell, you name it everything I once took for granted was no longer in my grasp. My entire life had been stripped away from me. My brain has sustained three blows to the head with blunt force trauma causing one to actually degloved my entire left side. My jaw was shattered into thousands of fragments of bone with five of my lower teeth gone, and my jaw is missing. Both of my mandibles were completely shattered. Not to mention my back is permanently broken at the L11, three of my right ribs completely shattered, and my body was bruised and stomped on. To say the least it is a miracle I am even able to breathe. I have been completely paralyzed and have learned how to use a wheelchair to a walker to walking.

I have gone from mouth wired shut to now able to speak even though I prefer to be Mute. Once unable to utilize both my hands and feet, I am now without a doubt able to utilize all my body parts. I have had many doctors and rehabilitation staff come in and out of my life as well during my recovery. The one thing that was amazing is one person worked with a few different organizations to be able to direct me in the path of Small Victories Foundation. I was informed that they work with people whom have Traumatic Brain Injuries as well as those with other forms of Brain Injuries to help them to be able to get some type of creativity in while learning how to utilize limbs and brain functions again. Once told I could take up drum lessons, I was all in. At this time in my recovery I was afraid to be in the room with a man alone or even outside of my house. I did not have the best motor skills and to say the least my attention span was as short as a fuse to a fire cracker. After months of practice I actually was getting great however the ringing in my ears was getting worse. I sadly had to walk away from drumming at the time however was advised that Small Victories Foundation also lets you get creative with art such as drawing or pottery. I decided to take on pottery since it forces you to focus and utilize all of my limbs all the things I needed to get even further in my recovery. Well let’s just say that with pottery I have seen how artistic I really am. At one point in time I would try and throw a bowl and get some type of weird formed blob. Now when I throw pottery, I can actually make a bowl that is able to be used. Small Victories Foundation has provided me hope in seeing the progress I have been able to not only reach but maintain as well as keep pushing forward through my recovery. I know that without Small Victories Foundation I would not be as far as I am in my recovery without these awesome programs provided at no cost to the clients.

It has been less than two years since my recovery has started and I can say with much faith, hope, and love anything is possible. The mindset to be able to give people hope has taken me some time, since I was advised by every medical professional that I have meet that I should not be able to do majority of the things I have been able to accomplish. I have been able to inspire people to not give up and to keep going. You have to know within yourself who you truly are to be able to give to help those in need. A large portion of my recovery has had, and will continue to have, Small Victories Foundation in it. This foundation has made my life a little easier to say the least.

On this Giving Tuesday yes, I am asking that you please reach into your wallet or purse or reach out to your account and give abundantly. When we have humans helping humans to be able to get back to normalcy or complacency as we call it, we need the village to come together and help us. I am asking not only as a human being but as a person with multiple Traumatic Brain Injuries that you be willing to say that you gave to a cause knowing that it is helping a group of people whom otherwise would be left to be lost in their thoughts without these amazing programs that Small Victories Foundation provide. Remember those small things that we forget to say that we are grateful and thankful for. The capability of sight, taste, smell, hearing, feeling, the list goes on and on and on. We I say we because I myself still after everything I have been through still sometimes take the simplest things for granted. Do not forget to take a moment and be grateful to be able to be thankful for the things that you have in this life. In doing so please donate to Small Victories Foundation on this Giving Tuesday to help not only myself yet other fellow Traumatic Brain Injury and Brain Injury survivors continue to succeed in their recoveries. We thank you so much for taking the time to donate to a cause that really does help change the world one person at a time.

Thanks,

Kris McCoy

SVF is pleased to feature the very talented writer Kris McCoy. 

Seeing is Believing

By | 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.

A Special Space for Fun and Music

By | Uncategorized | 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.

Never Leave a Man Behind

By | Uncategorized | No Comments

 

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

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

By | 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.