Man sitting on bed looking confused.

How Brain Injury Confusion Is Different From Everyday Confusion

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It can be hard for others to understand what’s going on when people with a brain injury say we’re confused. Heck, it’s often even hard for us to understand. This lack of understanding can lead to incredible frustration for others and for us.

What exactly is brain injury “confusion,” why is it different from everyday confusion, and why are TBI survivors often brought to our knees when faced with it?

Well, there is such as thing as “getting confused” from time to time in life, and then there is “getting brain injury confused.” I am not trying to put “brain injury confusion” on a pedestal or say it’s much worse than any other kind of confusion, but I do want to make a distinction between the two. This may help people understand it better and lead us to discover ways we can overcome it.

Perhaps the best way for me to explain the differences is to relate an experience I had about 10 years ago,  which shows TBI confusion at its worst:

I needed to make a trip to the copy store to make copies of a stack of documents, and, having been in this situation before, I wanted to avoid the potential cluster-mess I knew loomed in front of me. This is one of the peculiarities of brain injury confusion: I absolutely knew the trip I was about to make was going to test my abilities to be organized and stay levelheaded, and that if I made one slip-up I was going to be out-of-control confused.

I knew preparation was key, and the first thing I did was take my stack of documents and organize it. Once at the copy store, I carefully laid everything out in piles. Setting myself up properly for this task was the first order of business. I hate to say this but I really needed to make it as foolproof as possible.

Things went along well for about 10 minutes, but then one sheet of paper got in the wrong pile and I was completely thrown off. My head started spinning as waves of confusion rolled up, and then my mind went blank, as though my internal processing center had lost power. I started to sweat and got very angry at myself.

I’ve learned over the years what works best for me in situations like this. Rather than try to correct any mistakes in midstream, I needed to be levelheaded and admit to myself that I was going to have to start completely over. I knew if I tried to make any mid-course corrections, I would get even more confused.

I was able to finish, drive home and plop myself down on the sofa: sweating, dizzy and exhausted.

Not every confusion episode is this dramatic, but while this one example highlights how intense an episode can be, it can also give you a clue as to how easily one can become confused, even when doing seemingly mundane tasks.

The type of confusion I encountered was, in some ways, similar to what someone would experience who’s having an anxiety attack, where one has emotional and physical reactions to being anxious. While sometimes marked by blank stares and a passive admission of “I’m confused,” TBI confusion can, at its worst, elevate confusion to a situation where you don’t know what to do and feel extremely angry.

The only good thing about brain injury confusion is that often you can prepare, because you have some understanding and knowledge of the situations that cause confusion, as I had tried to before I went to the copy store. Being able to predict when you’re going to get confused helps, but does not completely solve the confusion problem. You may do everything in your power to prepare for a situation you feel is going to be bad, and you still may not be successful in preventing it.

Follow this journey on TBI Survivor.

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Finding Happiness During Traumatic Brain Injury Recovery

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In 2011 I was a physical education teacher for high risk youth. One day we were playing basketball and I was accidentally headbutted in the mouth. At the moment, I had no idea that my life would change forever. I ended up losing my front tooth and fracturing my jaw. In 2013 I ended up being admitted to the ICU for five days because I was exhibiting very unusual behavior. I was delirious, I couldn’t walk on my own without my legs giving out, I didn’t know who I was or anyone else around me. The amount of pain that was radiating from my head was astronomical. I saw multiple neurologists who all came up with the same conclusion; they wouldn’t treat me because they would view my medical history and toss me to the side like their uneaten lunch. They were convinced that my symptoms were because I was sexually and physically abused as a child. I eventually found a neuropsych who did brain testing and concluded all my symptoms were, in fact, from being headbutted, not from the abuse.

Each day when I woke up, it was a mystery of what my new symptom would be that day. There were times I had completely lost my hearing and vision, passed out, lost control of my legs, had migraines that felt like someone beat me with a baseball bat, issues with speech, short-term memory loss and many more. I was also pregnant when my symptoms had peaked which made my fight even harder than I had imagined. Those were some of the worst moments in my life. However, I told myself I would recover and help others when I finally did. I would have bad days and breaking points but my whole mantra was to focus on my blessings, not my triumphs.

 

It wasn’t until my early 20s that I gained an appreciation for things I had never even thought about. Waking up and knowing who I was, having a migraine-free day, being able to recognize someone and remember a memory you shared, going to the bathroom on my own, feeling the sun kiss your face after being bed-bound, my eyesight, hearing, ability to speak full sentences and using all the right words, walking, etc. There are so many things I had taken for granted for many years and I had no clue how important they were to me until they were removed. There were times I was frustrated and wanted my old life back, but it wasn’t something I could dwell on for too long. I had so many blessings around me – I just had to be willing to see them.

A few years before my traumatic brain injury I was in Peru volunteering in an all-girls orphanage. It was my first time leaving the country and I was convinced I would go there to help people; little did I know it was the other way around. I went there so they could help me. Peru opened up a whole new perspective for me. In the United States we have conditioned ourselves to “chase the American dream.” Our whole focus is on the things we don’t have, such as a bigger house, luxury car, the newest iPhone, perfect family, etc. We have become so reactionary to our own circumstances that our surroundings and urges control us, not the other way around. While visiting Peru I met all kinds of people. They worked more hours than the average American, made less money, sometimes had minimal living quarters or food. Yet they had the one thing every American seems to be chasing: happiness. I learned that happiness isn’t something you can hunt, it’s something that lives within you. If you treat every day as a blessing then circumstances won’t control your happiness.

While in Peru I visited a small town for La Semana Santa week and met some of the most beautiful people who impacted me forever. I had the honor of meeting a family with a teenage daughter who was around 18 years old. She was bed-bound because she was in an accident while riding a bus. The bus flipped off the side of the mountain and she broke her pelvis, among other things. She was stuck in that bed and had to lay flat in hopes that it would heal properly. They didn’t have much money so they couldn’t afford to take her to another city to be treated. The bus companies don’t have insurance in Peru so this girl was just stuck hoping she would heal so she would maybe walk one day again. She wore the biggest smile and had the brightest perspective, just like most Peruvians. She didn’t have a grudge, never complained about boredom – in fact, she was very happy to be alive. This mentality was almost uniform in Peru, no matter what their stories were.  I remember thinking, I wonder how the average American would handle this situation (including myself).

After my traumatic brain injury I lost a lot of my memories but I eventually remembered that sweet teenager lying in the bed who taught me so much. I remembered how she conquered peace and happiness was what she made it. This became my whole perspective with my brain injury. My injury has control over so many aspects in my life as it is, why would I want to hand over my happiness too?

If I were to dwell on all the things that were going wrong and how my life had changed, I knew I would never be happy. I didn’t want to create milestones of if I have “x” then I will get “y.” Turning life into an equation only sets up a precedence for expectation. Expectation is something that comes from the ego. It sets up a stage so we can scale and judge our surroundings. But what if my surroundings didn’t control how I felt? I wanted happiness and peace during my recovery and my life no matter what stage I was or am in. I will always keep growing and pushing myself to be better, but I won’t give anyone or anything power over my happiness. That is mine to cherish, hold and experience. It has been the most powerful part of my recovery.

Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll.
I am the master of my fate:
I am the captain of my soul.

– William Earnest Henley

If you or a loved one is affected by sexual abuse or assault and need help, call the National Sexual Assault Telephone Hotline at 1-800-656-4673 to be connected with a trained staff member from a sexual assault service provider in your area.

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How Relationships Can Change After a Brain Injury

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I want you to imagine someone who deeply loves you; how they make you feel when they smile at you and what it felt like to be around them. What if life changed in an instant, and they never looked at you the same way again?

Sadly, this happens to many traumatic brain injury (TBI) survivors, myself included. I have always been outgoing and had many cheerleaders who looked up to me. That look of aspiration turned into the look a wild animal would give after being caught in a trap for hours: frightened, helpless and hopeless. I remember seeing this look on people for a long time. Even when we were having a good time together, that look would be hiding deep in their eyes, waiting for my brain to scare them again. They would hug me as if it was the last hug they would ever give me.

My heart would shatter because in my mind I knew there was a chance they might be right; this might be the last time they hugged me. Even if I lived through the hospital stays and tests and “seizures” no doctor could diagnose, what if I forgot so many memories we shared that they couldn’t relate to me anymore?

When my TBI occurred it slowly began to bury every relationship I had. I have had a couple traumatic experiences in my life, and like a cat cashing in his lives, I have always bounced back. But with this brain injury I was not landing on my feet. That strong, confident, feisty woman turned into a helpless little girl who couldn’t even take a bath without supervision, or recognize family members. How do you relate to someone who has changed so drastically overnight?

Each brain injury is unique. Everyone can experience different symptoms, treatments and recovery times. However, there is one part of brain injury that is universal: the evolution of relationships. When the accident first occurs everyone tends to rally around you and cheer for a speedy recovery. When a limb is broken it heals, you rehabilitate, and life tends to move on. When there is damage to the brain or spine, the word speedy doesn’t come up during your recovery.

I remember being in the ICU when the symptoms of my TBI peaked in 2013. I earned myself a bright yellow “fall risk” bracelet, and my head was wrapped in gauze. I would wake up and have no idea who I was, or where I was. I wasn’t able to move the left side of my body and my head felt like it had been manhandled by a gorilla. My vision would be almost non-existent, and if I was really lucky I what I could see would be in doubles.

I would look around the room, not able to recognize my loved ones, a tear would roll out of my left eye and I would say, “Is my brain broken?” I would see everyone around me, dumbfounded on how to answer that question. My mouth would be so dry I could barely move my tongue to talk. “Was I in a car wreck?” I would utter out next. “No, honey, you weren’t in a wreck,” someone would usually confirm. I didn’t understand how I got there, or why I was in the condition I was in, although, they didn’t either.

 

I was sent home after five days in the ICU with no tools or explanation of what was happening. I would sleep for 14 or more hours a day. I was so weak and fatigued that I couldn’t sit for too long and my head would droop over as if a weight was tied to my neck. Sometimes my eyes looked like a zombie, just soulless. I couldn’t handle too much noise or light. If I reached my capacity with stimulation I would turn into an irritable T-rex that was seeking vengeance on anything that crossed my path.

I remember one day when my best friend sent me a text and asked if I wanted to hang out. I was overstimulated already when my phone began to buzz. He hadn’t heard the news about my condition yet, and unfortunately he found out through a text message sent straight from the wrath of my brain injury. I went off on the poor guy without realizing or remembering what I had done. He showed up to my house about a week later with a Disney puzzle in hand, and sulking sadness and confusion. I tried to explain what I could, as best as I could, and I saw his eyes tear up. He knew to some degree he lost his best friend Nikki, and she may never come back.

After I learned how I treated him on that text, I was immediately filled with regret, shame, and embarrassment. How could I be so cruel to some who cares about me so much? When he left I remember longing for the day we could go hang out again. I was also terrified — what if I said something worse to him, or said something I would never be able to take back?

I began slowly isolating myself from everyone so I wouldn’t be hateful to them, because I knew I wasn’t in a state to control it. I was also too embarrassed to be around them. Some days my speech was slurred and I would mix up my words. I can’t tell you how many times I called my dog a fridge, instead of Nyah. I felt worthless, like I was a burden to my friends and family. I saw the look on my friends and families faces that they would wear at my funeral. I didn’t have the emotional strength to keep facing that.

Significant time had passed and I was still working harder than ever to slowly get my life back. I had family members who would be critical of me because I hadn’t readapted into what they considered a normal life. “When are you going to get a job?” they would ask. Or my all-time favorite, “Is she just lazy?” I would get deeply offended. At the time I was going to 15 appointments a week to try to get to a stage where I could have some sort of quality of life. It took hours and hours of work just to come as far as I had and yet it still wasn’t good enough for them. They talked to me like a failure and a disappointment because I wasn’t healing at the rate they expected. It was ironic to me that all these people had opinions of how far along I should be, or what I should be doing, and yet not one of them had suffered from a brain injury. How could they project such a high standard at me, when clearly they had no education or experience that could relate to my circumstances? Why couldn’t they accept how I had become beautifully broken?

I knew that loss of relationships was a common after-effect of TBI but I was curious as to how common. I know of at least 37 survivors that have lost friends, family, and spouses as a result of their TBI. People who have vowed to be by your side, for better or worse, disappeared when the situation became “worse.”

Brain injury survivors once were nurses, mechanics, doctors, business owners. A brain injury can happen to anyone. Whether you are on your way home and God forbid get in a car wreck, slip on the ice, or collide while shooting some hoops. What would you do if everyone you loved started trickling away from you? Nothing hurts more than losing relationships with family, friends, and everyday life. While your lives have moved on and you pulled away I was still learning how to get dressed by myself.

If you want to support a loved one who has TBI, drop the expectation of what they are supposed to be. First off, unless you have been there, or have some sort of doctorate in the field, you are not qualified to tell me “how I should be progressing” in order to have you in my life. I have come to peace with my condition. I love every part of myself, even if that’s not good enough for you. I wouldn’t apologize for accidentally breaking my arm and I won’t apologize for accidentally breaking my brain. I am “beautifully broken” and I am proud of how far I have come, even if you don’t understand my journey.

If you ever do find yourself in a predicament like I was in, I hope you are treated with love and respect. That you aren’t abandoned by society because you don’t meet their expectations. I hope friends come by your side, and have patience with you even though you have failed to do so with them. If you find yourself in a situation similar to mine with no one around, know that you can reach out to me. I will be your friend and help you, even if you didn’t treat me with the same respect. Survivors are people that matter, and deserve to be treated as such.

Five Ways I am Different After My Traumatic Brain Injury

1. After my TBI I used to repeat myself often, and here and there I still do. I was OK with people calling me out for it, because it pointed out my much-needed growth. If someone was cold, or made fun of me it would make me feel mad and frustrated with myself. Sometimes it could put me in cycle where I would feel worthless.

I know it can be irritating to hear the same broken record, but it was sad to me that I was that record and couldn’t remember it. I may not have remembered telling the person, but I do remember some people’s reactions and it hurt. Saying things like “That’s right, you had mentioned something about that earlier, thanks for reminding me,” was really helpful. I know there were many times when my mom would pretend it was the first time she had heard something, even if I had already told her 10 times that day. I can’t tell you how grateful I am for her support. She was always kind, gentle, and encouraging; it has allowed me to mostly heal my injury.

2. When my brain would be overstimulated or something wasn’t functioning properly, I would turn into an angry wildebeest. My tongue would lash harsh phrases at people and I wouldn’t have a recollection of everything that I said or did. The brain goes into fight or flight (survival mode). It does what it can to survive.

By yelling and going off on everyone two things tend to happen. The brain produces different hormones and begins to change the chemistry of the brain, and a lot of times people would back away from me which brought down the level of stimulation. Arguing with me would only make the situation worse since my brain would go deeper into survival mode. Even if I was really hateful, I was fortunate enough that my parents understood. Them leaving the room and not arguing was extremely helpful, even if I was arguing something ludicrous like the San Francisco Bay Bridge was in the UK. I would also find a sanctuary in my laundry room. I was so hot (mostly because I was pregnant) and I would lay on the floor in the dark to let everything calm down.

3. Before my TBI I used to travel all the time. It has been a hard thing to not be able to just get on a plane and go. My brain is not able to adjust to altitude or barometric changes. When experiencing these drastic changes my head feels like it’s in a microwave and any minute it’s going to explode like overcooked leftovers. The pain is astronomical and I have cried when it’s too intense. I get extremely nauseous and irritable. I am exhausted by the time I get back to the altitude or barometric pressure I am most acclimated to.

4. I have a tendency to forget to do something easy like mail off a bill or make a phone call. It didn’t help the situation to have someone angry at me for forgetting. It wasn’t intentional and I am still very proud of all the things I do remember. Doing things like getting me sticky notes or organizing a calendar with me were very helpful. I also started relying heavily on my phone to track appointments, phone calls, and any other tasks I needed to do.

5. I have always been very confident and witty. I could crack jokes with the best of them. When my symptoms were really bad I couldn’t even understand a knock-knock joke, never mind tell one. I had a hard time relating to people because they were out doing so many things and I was always in the same routine. Go to appointments, and fight to heal the brain injury. I would eventually be vague with people because I was always telling the same ol’ story and I didn’t want to bore them.

Or I got reluctant to hear questions like “When are you going to be better?” or “When are you going to be back to normal?” I myself couldn’t even answer that question and I felt worthless. I have fought this hard to be where I am and I still didn’t feel good enough for them. Like you will only be by my side if I change back to my old self. And sometimes I would utter rude things to myself like, “Newsflash people, I don’t even remember who I was. How am I supposed to ‘get back to normal’ if I don’t even know what that ‘normal girl’ is anymore?”

I was able to build deeper friendships and relationships with the people that would keep encouraging me. If I disclosed a baby step of progression I would get positive affirmations like “awesome” or “I knew you could do it.” It encouraged me to keep fighting, and I felt some sort of self worth. Like I was finally climbing out of the darkness, into the light.

Follow this journey on My Traumatic Brain Injury.

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When People Call Me Good 'for a Disabled Person'

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“You snowboard good for a disabled person.”

It took me a day to actually process what I was told. I thought: “Wait, what?” You see, I have a traumatic brain injury and acquired brain injury. My brain isn’t as fast as it used to be. I can catch what you say, but my brain doesn’t know what to do with that information right away.

Participating in Race Camp at Ski Spectacular.
Participating in Race Camp at Ski Spectacular.

Even though my brain is damaged, I walk differently, and I talk differently, I still want to do the things I did before. This is where adaptive sports comes into the story. I travel 7 hours to get to my Disabled Sports USA Chapter in the Northeast mountains to learn how to snowboard again. It is my second season back on my board, and I have to say I am snowboarding much better than last season, thanks to all my coaches.

It’s a new season with a handful of new coaches. Most of the coaches work in the rehabilitation and healthcare field, so they are really good when it comes to teaching people with disabilities how to ski or snowboard. Heck, one of my coaches has a brain injury as well, so she knows first hand! Another one of my coaches is an OT (occupational therapist) and she is really helpful when it comes to getting my foot in my bindings, zippering, and helping me manage my muscle tone. She is also the only person I let tease me when it comes to my speech/language issues.

Being coached by Paralympic snowboard racers in CO.
Being coached by Paralympic snowboard racers in CO.

During my first weekend up at my program, I had a familiar coach, and I also had a new coach. We did really well. I did even surprised myself with my own shredding! In the afternoon, the new coach said to me in the gondola, “You snowboard good for a disabled person.”

I really didn’t know what to say. He continued talking about how I’m almost like an “able-bodied” rider. I then joked around and said “If you want to see good adaptive snowboarders, you should head out west to Breckenridge for Ski Spectacular,” and chuckled.

I’m really not that good. Well, not as good as I used to be. Hell, I’m just starting to be able to carve and ride switch again. If I were able-bodied, I wouldn’t be re-learning how to snowboard again with a disabled sports program. I wouldn’t be able to snowboard better than I walk (I seriously do, it’s ridiculous). If I were able-bodied, I would be able to see out of both of my eyes and be able to see the entire picture, not just glances (thanks Balint’s Syndrome and field of vision loss). If I were able-bodied, my right side wouldn’t get all toned and stiff when doing physical activity.

However, I do not want nor need to be reminded that I am “disabled.” I don’t want to be called good “for a disabled person.” I don’t want to be referred to as a “disabled snowboarder.”

I just want to be called a snowboarder.

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What I Need Others to Realize About My Life After Traumatic Brain Injury

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I have struggled with traumatic brain injury since my first concussion in 2009. It was my first semester of college, and I was playing pick-up soccer at a Young Life leadership weekend retreat in the Adirondacks. I was playing goalie when I was kicked in the face going after the ball. Fast forward to today and 10 concussions later: I have met some of the best physicians in the country, and yet I still struggle daily with persistent post-concussion symptoms (a la persistent post-concussion syndrome). General anxiety, depression, post-traumatic stress disorder (PTSD), migraines, headaches, vision impairment…the list goes on and on.

What I wish people would realize about traumatic brain injury (and every other invisible disability) is that just because you cannot see a disability does not mean it does not exist. You can’t see a brain injury like you can see a broken leg, in a cast. You also can’t see depression or anxiety or migraines; you just see the way people cope with it. I have felt alone, isolated, contaminated, wounded, illegitimate and worthless. No medication or therapy can completely eliminate these feelings, although they do help. I have great expectations for the promise that neuroplasticity holds, but I still struggle daily with the symptoms of my brain injury.

One sentiment that every human can identify with is the need to be understood. This is the same for those who have an “invisible” disability, but on a grander scale. I want my family to understand that when I lose control and burst out in anger, I am not upset with them. I want my friends to understand that when I decline invitations to parties or going out after work, it’s not that I don’t want to spend time with them. I want my employer to know that when I call in to say I am too ill to come to work, I’m not just shirking my responsibilities. My symptoms can make it seem impossible to move, to get up and to do what is expected of me.

For those who are struggling with traumatic brain injury and other “invisible” illnesses, I would like to tell you that you are never alone. You are worthy of love and compassion simply for being what you are: a human being. Don’t ever let other people tell you what you can or cannot do. Don’t ever tell yourself that you can’t do something. Be the greatest self-advocate you can be, and remember that you deserve the same degree of advocacy that you would do for others. There is hope. You are resilient, and you will persevere.

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

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“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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