Student reading book on library floor.

Why a C Feels More Like an A to My Daughter With a Traumatic Brain Injury

“Mom! Mom!” My daughter’s voice startled me as she screamed and bounded up the stairs. “Mom!” she shouted again and again. Was she excited or was she terrified? Yelling is out of character for her, so I quickly set my computer aside and stood up as she hurled into my room.

She’s in her third year of college and was home for Christmas break. I’d felt the heaviness of her anxiety daily since she’d been home as she checked the internet in anticipation of her final semester grades. Inwardly, I was anxious, too.

“My grades came in!” As the words spilled off her lips, my heart accelerated to a pounding, and I steadied myself trying to read her, not knowing whether I would need to console or congratulate.

Semester’s end. No biggie. She’s in her third year at the university. She’s diligent, hard-working and conscientious. She attends class, tries hard, and completes all assignments.

Why would semester’s end produce anxiety in a student like that? Usually, I suppose, it wouldn’t. But we once feared that college, for my daughter, would be a pipe dream, a carrot beyond her reach. Something other people would do, but she would only dream about. She’s 5’8”, slim, beautiful. If you passed her on the street and exchanged pleasantries, you’d never know she’s different. But she has scars no one can see. They’re inside her head, seared onto her brain.

My daughter had a TBI — traumatic brain injury — which affects every fiber of her being, every aspect of her life — physically, emotionally and mentally — every single day.

TBI kills thousands each year. It’s called the “invisible injury” because there are often no visible changes on a person’s outside — no crutches, no wheelchair, no cast, no obvious physical differences — but underneath something is different. It can’t be cured, and many times it isn’t understood.

Traumatic brain injury occurs when a sudden trauma damages the brain. In my daughter’s case, it was a car accident. According to the CDC (Center for Disease Control and Prevention), 1.7 million people sustain a traumatic brain injury each year, and 50,000 people die from it annually.

People die from trauma similar to what my daughter sustained. They’re smacked on the head and never wake again. She lived, and for that I’m forever grateful. But 20 years after the injury, she still deals with its effects, and likely always will.

Our story begins when a driver fell asleep at the wheel, crossed into our lane and crashed into our car while traveling at a speed of 80 miles per hour. We had just pulled over onto the emergency shoulder and my husband had gotten out of the car and removed her from her car seat minutes before the devastating impact. We were clearly in the wrong place at the wrong time. My daughter was ejected from our vehicle and lay comatose in the hospital for more than three days.

Everyone feared a parent’s worst nightmare. But she lived. Her future and all of our lives would be dramatically different.

It’s more than 20 years later and she’s still struggling with organizing information, emotional instability, crowds, and social interaction. She is bothered by loud noises, experiences mood swings, fights depression, has choppy, halting speech, trouble with word retrieval, and a host of fears.

By society’s standards, she’s “abnormal.” I vowed never to apologize for who she is. While the accident altered the speed at which she processes information, it didn’t alter her intellectual capacity or her will. My daughter was a strong-willed, exceptionally bright and creative child. Before she reached the age of 2, she could recognize letters and numbers as well as write them. In addition, she could identify colors and solve puzzles. She was clearly artistic. We suspected she might even be “gifted.”

We felt crushed after the accident. It was difficult to accept in the beginning. Our heads reeled as we struggled to understand. But we accepted that our daughter was now different and encouraged her to embrace her strengths. In a society that rewards quick thinkers and academic excellence, often little value is placed on those who work on their own timetable.

Her value didn’t diminish in our eyes. We’ve never expected less from her even when others did: a reading specialist who asked her if she felt “stupid” because she couldn’t read; school systems that refused to give her services because she was home schooled, even though we were entitled to them; a college counselor who tried to convince her to stop at a 2-year Associate’s degree instead of completing all four years for a Bachelor’s degree.

She’s been left out, looked over, and left behind by peers. But she forges ahead.

Twenty years ago, we didn’t have all the information on brain trauma like we do today. Specialist after specialist droned “we don’t have much data on this sort of injury. Most people who sustain an injury like this die.” So early on, I became a fierce advocate for my daughter, reading everything I could get my hands on about TBI. Many times when consulting with educational “specialists,” I was the TBI “expert” in the room.

I designed my own IEP (Individualized Education Plan) and tailored her education to her needs. I had a vested interest in her success and in her happiness. I believed in her, I loved her. I refused to put her into a system I felt would batter her self-esteem and confidence and label her with “can’t’” instead of with “can.”

As I struggled to find effective methods and techniques to bring out the best in my daughter, I shed many tears and spent countless hours second-guessing my decisions. Was I pushing her too hard? Was I giving her what she needed to be successful? Was I holding her back by not not allowing her to work with the educational specialists in the school system? My doubts were compounded by specialists who openly challenged our decision to home school, questioning my credentials and suggesting that I was expecting too much under the circumstances. I believe when you love someone, you don’t expect too much. You evaluate their abilities and you expect exactly what they’re capable of, and you don’t stop until you get it.

She wanted to be a writer and an artist. If a child with verbal communication challenges wanted to be an author, we’d cheer her on. Each school year, I’d start with a careful assessment of her needs, strengths and areas of weakness. We constantly reminded her that just because she learned differently, it didn’t make her any less intelligent. We encouraged her to do her best and were careful not to compare her to anyone else. And in the end she thrived because of it.

“Mom, I got a 79.5 percent in Argumentation and Debate!” she beamed. Argumentation and Debate. A class necessary for a degree in Communication, but a tough row to hoe for a student who’s challenged by slowed processing speed and word recall. I know she probably worked harder for her 79.5 percent than kids in the class who got A’s. (And, I honestly wondered why the professor didn’t give her the half point. But I know that wouldn’t have made her happy if she hadn’t earned it.)

She was proud of her 79.5 percent. And so was I.

“Thanks for all your help, Mom!” she said, referring to the hours of coaching, counseling, encouraging I’d given her throughout the semester.

“I knew you could do it,” I responded with a smile, holding back tears.

Semester-end grades may always elevate my daughter’s anxiety level. As her mom, I am the anchor at the other end, grounding her, steadying her, keeping her on course, and cheering her to success. Her success.

Too bad effort isn’t measured with a letter grade. If it was, my daughter would get an A+ in my book.

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The Grit to Rise Again After a Traumatic Brain Injury and Mental Illness Diagnosis

When I experienced a traumatic brain injury (TBI) in a car accident and proceeded to exacerbate it by sustaining two subsequent concussions, there were times when I felt as though I had endured a great loss, the loss of who I thought I once was. My mental health and sense of self took as much of a blow as my head did. The sense of loss was accompanied by often extreme anxiety and mood swings, from low to high, multiple times in a single day.

There was a part of my original self that was still there, hanging on in the background while the rest of me wrestled with the sense of loss and other mental health challenges I suddenly faced. That part that stuck around, a source of positivity through so much negative, was perseverance.

I also think of it as stubborn resolution. I wasn’t functioning the way I was used to, but I realized I was, indeed, functioning. I had goals even though I wasn’t all that sure I was being effective in working toward them. Yet, the goals were there, the desire was there and the perseverance was there. I didn’t want to give up. So I stubbornly resolved not to.

Healing and change didn’t happen in an instant. I came to realize they didn’t have to. Once I allowed myself to internalize the fact that I was truly living my life despite setbacks, a liberating shift occurred. I began to see my TBI not as a loss, but as an opportunity. I had a chance for a fresh start.

I realized that yes, I had lost my original sense of self, but I was still functioning in spite of it. Therefore, I could move forward toward new goals. Upon this realization, my perseverance solidified into grit.

Grit involves the knowledge that we as humans have resilience, courage and endurance. Although we deal with losses and experience things like non-diagnosable mental health challenges or full-blown mental illness, we aren’t defined by them. We, therefore, can see adversity as opportunity to grow and to redefine ourselves.

It was grit that let me to seek counseling. Then, when that was insufficient because my injured brain needed more intense treatment, it was grit that let me find and admit myself to a behavioral health hospital (not just once, but five times). It’s not weakness that causes people to be admitted to behavioral health hospitals. It is strength and determination.

It is that voice inside each and every one of us that whispers, “You can create yourself anew.” It is the gut feeling that despite a TBI or a diagnosis of mental illness (for me after the brain injury, anxiety disorders and bipolar disorder) or other losses and adversities, we have an opportunity to redefine ourselves and our goals.

No one wants to face a traumatic brain injury. No one wants a diagnosis of mental illness. No one wants to experience a loss of his/her sense of self. However, everyone can find that part of themselves that is functioning and has goals. Everyone can use this positivity to persevere, to develop grit. No matter what, we can all use adversity as an opportunity to create ourselves anew and rise.

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I Want to Shed Light on My Life With a Traumatic Brain Injury

According to the CDC, a traumatic brain injury or TBI “is caused by a bump, blow or jolt to the head or a penetrating head injury that disrupts the normal function of the brain… The severity of a TBI may range from ‘mild’ (i.e., a brief change in mental status or consciousness) to ‘severe’ (i.e., an extended period of unconsciousness or memory loss after the injury).”

I received my TBI when on January 1, 1997, I fell out of a third-story window and my head slammed on the concrete below. My skull wasn’t the only thing to break. I also sustained a compound fracture of my left femur, broke both my wrists, my right elbow, my left hip, my jaw, my nose, burst my sinuses, right ear drum and permanently damaged nerves that have left me with facial palsy and chronic paresthesia.

I spent two months in the hospital and the greater part of the following year in rehabilitation. Surgery, therapy and time healed what could be fixed. I adapted and learned to live with most of what couldn’t. It has been almost 20 years since that fateful night, yet at times, I am still a stranger to myself and to many of those who knew me before.

The once fearless girl who bought a one-way ticket from New York to San Francisco with only $2,500 in her pocket, without a job or even a place to live, is now often afraid of leaving her small suburban town. Confidence has been replaced with self-doubt, reservation with impulsivity, carefree with depression, self-control with emotions that are hard to control.

Because TBI is an invisible disability, it can get overlooked or misdiagnosed. Symptoms can include memory loss, forgetfulness, lack of focus, lack of coordination, difficulty with multi-tasking and extreme fatigue. TBI can affect control of emotions so feelings of happiness, sadness, anger, fear, excitement and passion might all become extreme. And according to the LA Times, a study of older military veterans found that those with TBI are more likely to develop dementia and Alzheimer’s as they age.

I was determined not to let my TBI prevent me from living my life. I swore I would never use it as an excuse for why I couldn’t do something. No matter what, I was not going to give up. It became my crusade.

At first I thought if I ignored my TBI, it would “go away.” After all, TBI is invisible. If I don’t tell people I have it, they won’t know, and then it won’t be an issue. When that didn’t work, I thought I would just cover up my problems with medication and alcohol. But that actually made it a lot worse. So I decided to go on a quest for a cure.

I scoured the internet. I reached out to doctors all around the world. I spent thousands of dollars on new medications, holistic therapies, experimental techniques, I even got myself into a clinical trial. Some things worked for a little while, but I always ended up back to where I started from, trying to face life with a disability. All in all, I failed to do the one thing that would have allowed me to have a “normal” life: to accept my disability for what it was — a disability — and to adapt my everyday life to my new normal.

The journey I have been on to reach this moment of clarity has been long and hard. I lost friends because I was angry they didn’t accept me for who I now was, a person struggling with a traumatic brain injury. But how could I expect them to accept me when I refused to accept myself? This is the reality of a traumatic brain injury for me — it changed me, it changed how I behave, how I react, how I think. It changed how I perceive reality because my brain is my reality. I have been asked hundreds of times, “Is this you talking or your TBI talking?” or “Did you do that or did your TBI do that?” The answers to those questions are both yes because my TBI is who I am.

I can’t change the past. I can’t change what happened to me or to the millions of others who live with a TBI. But hopefully, I can change how society sees us. Hopefully, I can shed some light on what my life as a traumatic brain injury survivor is actually like, and by doing so, help bring a little more understanding and acceptance to this invisible disability.

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4 Things I Wish I Knew Before My Daughter's Concussion

This past summer, my teenager was accidentally elbowed in the nose, causing a fracture as well as a concussion. Although she complained for weeks of headaches, the doctors repeatedly assured her that headaches were a common symptom of nasal fractures. As her nose healed, it became apparent that something bigger was amiss, and she was diagnosed with a concussion. We understood at the outset that certain risk factors such as preexisting migraines, age and a prior concussion, could cause this injury to linger, but all the explanations in the world didn’t prepare us for the months ahead.

The Mayo Clinic defines a concussion as “a traumatic brain injury that alters the way your brain functions. Effects are usually temporary but can include headaches and problems with concentration, memory, balance and coordination.” Most people have heard of concussions, but few fully grasp the implications. The patient’s family, friends, teachers and support network cannot see or touch the problem. It can be overwhelming not only to the patient, but also to family and friends who struggle to understand the nature and scope of the issue.

When school began this fall, my daughter’s headaches increased, and the rigorous classes in which she’s enrolled became more challenging. She was also unable to cheer, as the noise and commotion were detrimental to her headaches. Missing out on her favorite football season had a palpably adverse effect on her psyche. Unaccustomed to seeking help, my daughter refused to avail herself of the accommodations the doctor prescribed. She didn’t want to be singled out for extra time on exams, open notes or even a quiet room in which to test. When she realized the magnitude of the memory, recall and concentration deficits, she began working with each of her teachers individually, putting together manageable plans and making up exams and work on a personal schedule. Even with accommodations in place, she worked harder than ever before but ended the first marking period with straight A’s. While doing well in school is not new for my daughter, doing this well under the circumstances is a colossal accomplishment, and a nod to the fact that underneath this new label is the same resilient, determined and hard-working girl.

Here’s what I wish I had known before my daughter was diagnosed with a concussion:

1. Finding a supportive and knowledgeable network is crucial. We conducted extensive research and were lucky enough to find incredible medical professionals. But with concussions, that’s half the battle, and my daughter’s guidance counselor is the star quarterback of our team. She is an intelligent, informed, kind and dedicated woman who goes above and beyond whenever possible (and then some). She relentlessly advocates on my daughter’s behalf, thinks outside the box and helps us pursue options that promote success. When I’m exceedingly anxious (which is always lately), she reminds me that this is temporary and offers judgment-free support. We are beyond blessed to have her in our lives.

2. There is no time limit on “temporary.” Unfortunately, the symptoms of concussions can linger for months. Some symptoms, such as memory loss, may require extended therapy, and 100 percent recovery is not guaranteed. I wish I knew that “temporary” in concussion-speak is not the same as temporarily having the flu. Patience is not only a virtue when it comes to concussions, it’s a must in order to stay positive.

3. Some people are just not going to understand. When my daughter dislocated her knee and couldn’t walk, we received nonstop calls and offers to help. Now that we’re dealing with this intangible injury, I hear crickets. Recovery isn’t a linear upward progression. Even as my daughter makes progress, we have good days and bad. A headache-free day and a great night’s sleep mean fewer concentration issues, productive schoolwork and the ability to watch a movie. A rough patch means a step back, and having to explain to friends and teachers why you can do something one day but not the next is exhausting.

4. Communicate with your child’s teachers and coaches regularly. Each person recovers from a concussion differently. Communicating with teachers, coaches and everyone in the child’s support network ensures understanding and a mutually beneficial working environment. My daughter’s incredibly experienced and motivational English teacher suggested “resiliency” for her research project and class presentation. His sensible suggestion empowered her to embrace her injury and gave her courage to share it with others, on her terms. My daughter’s teachers and coaches have been supportive and proactive. They have been our partners through the recovery process, and I’ll forever be grateful for their willingness to offer alternatives, a kind word and “normalcy.”

Not a week goes by that someone doesn’t ask me, “Is that concussion still going on?” And I get it. I didn’t know much about this condition until it hit home. We’ve been in the trenches with our team of supportive professionals, friends and family since the beginning. We are staying positive and embracing the new “normal” whether it’s temporary or not.

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family of man who experienced traumatic brain injury

The Honest Answer to Why I Became a Speech Therapist

Do you ever wonder what makes your specialist/doctor/therapist tick? People ask me the question that makes me tick quite frequently: “What made you want to be a speech therapist?” I always respond, “I love working with kids and I love talking, so it was a no-brainer.” I am such a liar.

The real story started 14 years ago yesterday – August 1st, 2002. It’s a weird day in my life. It was the day I began my career as a speech and language pathologist. I was 18. Nope, I am not some teenage savant who finished six years of college before she hit adulthood. I was forced into the career on that horrible day. But back then I sat on the other side of the table.

That fateful night I watched my best friend’s motionless and bloody body scooped into an ambulance. I later collapsed in the hallway of our small local hospital as they intubated him on his way into the helicopter waiting outside. I prayed the entire drive to the hospital an hour away. I made a lot of promises I am not sure I would have ever been able to keep. I was desperate. When you think you are going to lose your best friend, you become desperate. When your best friend is also your brother, your whole world collapses.

And then we waited. A fixator on a broken leg. A broken arm. A full night of brain surgery. A shunt. A coma. How was this happening? I knew he was in there. I sat dutifully in the chair next to his bed for hours that turned into days, and days that turned into weeks. I would say things I knew would rile him up. I would talk about shows he hated, foods that made him gag, people he loathed. These were the only things that would make him toss and turn. And when he moved I knew he was alive.

And then he woke up. It wasn’t like the movies. I thought he would shoot up and tell us about his experience with “the light” and “the voices.” Not so much. He woke up with something called aphasia. It is common after a severe traumatic brain injury. He didn’t make sense. “If the jumpershell eats soon!” “Michael Jordan is 12 times here!” “You got the safety pins to speak?” He didn’t know us. We were strangers to him. He always referred to me as “blonde sister lady.” I was so touched he remembered I was his sister. We had a long road ahead of us.

I committed that day. We all did. I have a very vivid memory of my mother’s face as the neurologist explained the damage to her. It was stoic and strong but soft and motherly. Our world would revolve around his recovery. My dad would chose laughter and light banter encouragement. My mom chose to encourage through a soft heart and a stern hand. Like only a mother could do. I chose to stay his best friend. I would do everything in my power to work through this with him. We knew he had to be the one to do the work, but we would be there, too. We would learn and push and encourage. I sat through hours of therapy with him. When I wasn’t there, I demanded detailed accounts of sessions from my parents. My mom sat and studied each session, taking vigorous notes. She always asked for homework. And my parents always made him do it.

Three months of a hospital stay, six months of therapy and a lot of prayers later, he found himself near full recovery. Before we were dismissed from his hospital, his SLP invited me to observe her for a day. She thought maybe I had found my calling. She was right.

So this is the story of my journey to where I am today. Know I have been there. Know I appreciate the passion and the drive you have for your own child. When you bring your child to me, I don’t just see you and a kid. I see my mom and my brother. I see myself. I remember what it feels like. I remember how it feels to want nothing more than to see my best friend – my brother – not just survive, but thrive. When you call me with questions, I hear my mom’s voice. When you ask me for activities to use in the home, I remember my own family’s drive. When I walk through a diagnosis with you, I see my mom – sitting in that chair with that stoic and strong yet soft and motherly look on her face.

I could have littered this blog feed with pictures of my brother during his recovery, but I chose not to. I feel strongly that although this was a huge event in his life, it isn’t who he is, and overcoming this is not his greatest achievement in life. He is a college graduate and a successful businessman. He has an amazing wife and three fantastic kids. So I promise – your kid’s greatest achievements are also yet to come.

14 Things People Affected by Traumatic Brain Injury Wish Others Understood

Traumatic brain injury (TBI) is a major cause of death and disability in the United States, contributing to about 30 percent of all injury deaths, according to The Center for Disease Control and Prevention. People who survive a TBI can face a wide range of side effects, ranging from ones that may last a few days to lifelong disabilities.

The Mighty worked with the Traumatic Brain Injury Support Facebook page to ask people affected by TBI what they wish others understood about their conditions.

This is what they had to say:

1. “People need to learn to not judge you because of it. It makes it more difficult for us to keep moving on in the right direction.” — Erin Fox

2. “I am still capable of doing lots of things. I have worked really, really hard to overcome my injury and although I now suffer from epilepsy and use a seizure alert dog, I am still the smart, capable, funny uncommonly kind person I’ve always been. Stop telling me I can’t and start helping me reach my next goal.” — Kat Mac Kenzie

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3. “Remembering things is difficult. I’m not being lazy by only working a few hours a day or needing days off during a busy time — I just need more rest to function than you do… Changes take time for me to adjust to. What works for one person doesn’t always work for me.” — Sara Hill

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4. “I want nothing more than to be ‘better’ and not be judged like I’m a deadbeat for not being what I once was.” — Elizabeth Keene Alton

5. “The ‘new’ version of myself has very different needs than the old me. I need more rest. I need more time to form thoughts into words. I need more time to complete seemingly simple tasks. And I need my loved ones to realize and be patient with the fact that my emotions are so much harder to manage than they used to be. I still love my partner and my kids, maybe even more than ever, but I also need more solitude than I’ve ever needed before. I need compassion and cooperation. I need love and comfort. I miss the old me so so much… Raising awareness about this issue will be the first thing on my plate, once I can manage to claw my way back to some normalcy… For now, I need my sense of humor more than ever. Because it’s laugh and learn or cry and die, baby. And crying hurts the head.” — Kendra Partida

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6. “My injury may be invisible, but my life has been turned upside down. I will never be the same again.” — Christina Chalgren

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7. “Never assume a person who has difficulty communicating has nothing to say. They may have plenty to say. They just say things a little differently. Never assume their brain doesn’t work, because it does. It just may work a little differently than ours.” — Stacy Sekinger

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8. “Be patient with us as we learn to be patient with ourselves.” — Cindy Williams

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9. “I need help. To plan a day. A doctors appointment. I need someone to go with me. I need help to shop, cook and clean. I need help to find my limits and rest enough, but I also need gentle support to take small walks and do gentle 2-minute yoga so my body doesn’t stop working altogether. I need friends who come by and say ‘Hi.’ I need hugs. I need to vent and help to look for any sort of silver linings so I don’t go mad. I need new hobbies that are gentle to get my mind off my problems ,and I need help to get started. I need help to help myself.” — Catriona Thomsen

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10. “My brain takes different paths to understanding and explaining. It’s not a straight road, but one with detours.” — Keli Hanks

11. “You have no idea how much effort I have to put into all I do. Things I just did automatically prior to TBI require so much work. Everyone goes through moments in their lives which are difficult. For most there is an end in sight, a goal to work towards or for. I have no idea when my difficulties are going to lessen or even if they will. Some days having no ‘finish line’ sucks.” — Amiee Liz

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12. No we’re not the same person we used to be. We’re alive. But we can create a new journey, learn old stuff and new stuff. The strength and determination it takes to learn, try, try, try again, fall down and get back up is painstaking, but worth it.” — Julia Hewitt

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13. “I live by my systems. I have to have a schedule or I am lost. Don’t freak on me if I get clingy in a new environment. Things that are easy for you are challenging for me. Also, just because I look OK doesn’t mean anything. I have worked for years to get where I am now.” — Nancy Davis

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14. “As much as I wish things would go back to normal for her, this is our new normal and I’m OK with that.” — Emily Reigle

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*Answers have been edited and shortened. 

14 Things People Affected by Traumatic Brain Injury Wish Others Understood

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