14 Things People Affected by Traumatic Brain Injury Wish Others Understood

7k
7k

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

TBI1 copy

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

TBI2 copy

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

TBI3 copy

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

TBI4 copy

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

TBI5 copy

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

TBI6 copy

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

TBI7 copy

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

TBI8 copy

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

TBI9 copy

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

TBI10 copy

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

TBI11 copy

*Answers have been edited and shortened. 




14 Things People Affected by Traumatic Brain Injury Wish Others Understood

7k
7k
TOPICS
, Listicle,
JOIN THE CONVERSATION

RELATED VIDEOS

Why I’m Speaking Out About Comic Strips Like This One

580
580

When perusing the funny pages in the daily paper, I have few expectations. I look for a quick chuckle, and maybe enjoy a good a punchline. The last thing I expect is to feel like I actually got punched.

That’s what happened on September 14th when I read this B.C. comic strip. At first I thought to myself, “Jana, quit overreacting! It’s just a joke. It isn’t personal.”

Screenshot taken from Johnhartstudios.com

Two men standing next to sign that says “SLOW, CHILDREN.” Man 1: “What do you think of the new sign?” Man 2: “What’s it for?” Man 1: “There’s a public school up ahead.” Man 2: “You’re one comma away from a social media firestorm.”

But it feels personal. When you have a loved one with special needs like my 9-year-old daughter, Mary, who has Down syndrome, jokes like this comic strip don’t have the same context anymore. “Slow children” street sign punctuation jokes are not worthy of laughs.

I don’t want you to find it not-funny out of pity. That makes it more painful. I want you to stop laughing at these jokes and stop making these jokes because of your compassion. Compassion for what we go through as parents. Compassion for how hard our children have to work to do things that come naturally to others. Compassion for the long list of medical issues that can accompany cognitive challenges.

I am not perfect. Before having my daughter, I remember being the kind of jerk who would make the lazy, mindless joke involving the r-word or some insensitive short bus joke. Thank goodness for my daughter. She taught me compassion.

There was a moment just last month when I was upset and Mary marched right up to me and held me. She whispered in my ear while she rubbed my back, “It’s OK, Mommy. It’s OK.” She will likely never be a mother herself, but her instinct to care for others is a model we should all strive for. I need to be the best mother for her, therefore I am constantly asking myself how I can be better.

As the saying goes, once we know better, we do better; that’s been my mantra since Mary’s birth.

This brings me to the crux of this piece: Why is this cartoon not funny? Why are jokes poking fun of people with intellectual disabilities not funny? How can my experiences help you to know better?

When you use individuals with special needs as the punchline to your joke, even if you “don’t mean it like that,” it still hurts. Essentially you are reducing our story — our struggles, our daily advocacy, our milestones — to an ignorant zinger. And I say “our” because it’s not just about my daughter being minimized by these jokes; it’s offensive to the parents of these children, too!

Being a parent is already a full-time commitment. Being a parent of a child with special needs is a full-time job on a mission. When I add hours of weekly speech therapy so kids don’t make fun of the way my daughter talks, or spend thousands of dollars and endless hours on cardiology appointments, ENT evaluations, sleep studies, eye exams and multiple surgeries, it becomes our story.

So I ask you, as Mary’s mom, as someone who used to think it was harmless: Step back and see that jokes do have consequences. Next time you want to tell a friend they should be riding a short bus, please consider families like ours and those we’ve met through our journey with Mary. Stop and consider “slow children” in the perspective of Mary spending years in occupational therapy learning how to write her name. Stop and consider that “riding the short bus” is a reality for so many families whose children are in wheelchairs or have complicated medical conditions. Consider having to use alternative transportation because your child has a full-time nurse ready to suck excess fluids out of his or her trach at a moment’s notice — is riding the short bus funny anymore when you think of it that way?

Believe it or not, I can have a good laugh, too. But this comic strip reiterated for me that over and over we’re treated as if we’re the ones with the problem, as if it’s my fault I didn’t get the joke.

There are still times that the reality of Mary’s challenges take my breath away, but there are so many more moments where I burst with pride that she is mine. She is the light of my life, my heart. She inspires me, and that is no joke.

Jana and her daughter dressed up as Miss Hannigan and Annie from “Annie.”
580
580
TOPICS
JOIN THE CONVERSATION

Why I Won’t Stop Talking About My Son’s Dystonia

758
758

Yes, I am that mom. The mom who fills up your newsfeed with those annoying posts and is always talking about that word you’ve never heard of before: dystonia. When you first heard it, you probably thought it was a country, which caused you to wonder why I’d be raising awareness for such a thing. And then while glancing at one of my posts or listening to something I said, you realized dystonia is not a country. It’s a disorder my son, Andrew, has been diagnosed with. You probably thought to yourself, He looks pretty normal. He must have been misdiagnosed.

If you take the time to watch Andrew, you’ll notice he moves differently than other children. He is stiff and wobbly. His knees don’t seem to want to bend when they’re supposed to and other times they bend when they shouldn‘t, causing him to stumble or fall. His arms twist in toward his chest or in a contorted motion out to the side. The more Andrew moves or the faster he moves, the worse those strange movements are. Even when he’s sitting in one place and playing with toys, you can still see these strange movements. That’s dystonia.

According to the Dystonia Medical Research Foundation: Dystonia is [a movement disorder] characterized by persistent or intermittent muscle contractions causing abnormal, often repetitive, movements, postures, or both. The movements are usually patterned and twisting, and may resemble a tremor. Dystonia is often initiated or worsened by voluntary movements, and symptoms may ‘overflow’ into adjacent muscles.”

We knew as soon as Andrew became mobile that he didn’t move like other kids. He was delayed in reaching milestones. He was wobbly and fell down a lot. His hands moved in strange ways sometimes and his arms would twist in toward his chest or out to the sides as he ran. We began to ask different doctors about Andrew’s movements and often got the same response: “He will grow out of it.” But Andrew’s abnormal movements became more prevalent to us when Andrew’s little sister, Maliyah, arrived. As Maliyah grew and became mobile, we noticed that she was starting to move with more grace and ease than Andrew. He began having a hard time keeping up with her.

Approximately one year went by. One night we went to Wal-Mart, and as we were leaving, we noticed he suddenly developed a significant limp. It took just a few minutes for us to drive to the restaurant for dinner. As we were walking from the car in to the restaurant, we noticed his limp was even worse. We couldn‘t think of anything that would’ve caused that. By the time we got home, he wasn’t bearing weight on his right leg at all and had started to complain of pain. We went to the emergency room, but the doctors there couldn’t find anything wrong with him, so they scheduled us an orthopedics appointment. At the orthopedics appointment, we were told Andrew probably had a toddler’s fracture that was so small it wasn’t even visible on x-ray. We told the doctor of our concerns with Andrew’s walking and other movements, and they said the same thing: “He will grown out of it.”

Another year went by. Our concerns with Andrew’s movement grew as he grew. We told various doctors about Andrew’s strange movements. The doctors often agreed, saying they noticed he didn’t move quite the way he should for a child his age but were unsure what to do about it. We were referred back to orthopedics once again. That doctor again assured us that there was nothing wrong with his bones, and therefore there was nothing she could do for him. We begged the doctor to watch him try to run in the hallway and she agreed. As the doctor watched Andrew run, he wobbled and was unsteady. His arms alternated the usual twisting motions we were familiar with. She said, “Yes, I see what you’re talking about. I think I’m on to something.”

She examined him further and told us we’d been referred to the wrong clinic; we needed to go to neurology. She thought he might have cerebral palsy, but during Andrew’s neurology appointment, the neurologist said that word we weren’t familiar with: dystonia. In the weeks to come, Andrew had blood work, a brain MRI and a lumbar puncture, all of which came back normal. The diagnosis of cerebral palsy was ruled out and Andrew was given the official diagnosis of idiopathic generalized dystonia. We were devastated to find that Andrew did have dystonia; it affected his whole body, and the doctors didn’t know why or how to fix it.

Andrew has good days and bad days. Some days you hardly notice anything different about him, and others he struggles to walk and complains of a lot of pain.

So yes, I am that mom. The mom that fills up your news feed with those annoying posts and is always talking about that word you’ve never heard of before. Dystonia. And I will continue to be that mom and raise awareness until a cure is found and my son, along with all others living with dystonia, can have the freedom to move. I’m a mommy on a mission.

September is Dystonia Awareness Month. To learn more about this neurological movement disorder, contact the Dystonia Medical Research Foundation. To sign the White House petition to have September formally recognized as Dystonia Awareness month, click here.

758
758
TOPICS
JOIN THE CONVERSATION

9 Things I Wish All Medical Professionals Knew About Caring for Patients

319
319

I have a rare, genetic, potentially life-threatening and incurable disorder. And yet, despite this diagnosis, I am beyond blessed.

I am blessed because I have access to a comprehensive care medical team dedicated to helping me live well with this condition. They constantly exceed obligation or expectation every single day to help me live the best life possible.

They’re such amazing professionals and leaders, and I wish other professionals could learn from them about patient-centered care in the following nine areas:

1. Use worry/hope dialogue.

It would be easy to fill appointments with dismal news to process. However, my appointments rarely take this format. Instead, my team shares their worries and potential for challenges given the limitations of this disease. But that’s not the end of the appointment. It’s then followed up with a conversation of hope based on potential research, development of upcoming treatment options, my strengths as a human being and my coping abilities. This balance always leads me to feel far more empowered than worried for my future.

2. See me as a whole person.

With this team, I’m never my chart number. Or my disease. Or my medical history. I’m simply me — a unique person. And I feel that every time I’m at the clinic.

3. Ensure fear doesn’t rule my decision making.

This disease can be terrifying. Fear frequently has the potential to walk beside me. But I know my team is there to put that fear into perspective in a transparent manner. Each one of them helps me make decisions based on evidence, courage and hope rather than fear.

4. Help me partner with other medical professionals.

Trying to explain a disease that doesn’t always follow the normal conventions of medicine can be a trying task when engaging with other medical professionals. The attempt to integrate medical terms and treatment plans into my everyday life can be equally as trying. My clinic team is always there to help bridge that gap and teach me how to partner with other medical teams.

5. Never give up.

There are definitely times when I don’t want to hear about this disease again. But the clinic team never gives up. In every interaction I have with them, they are beyond dedicated to keep learning and sharing their wisdom with patients to provide hope exactly when it is most needed.

6. Check in with my caregiver/support system.

Every member of the team knows it takes a support system to live well with this disease. Not only do they acknowledge this, they genuinely take the time to explore what’s working well in this area and what else may be needed for support to ensure I’m not experiencing additional disease burden due to isolation.

7. Be willing to say “I don’t know.”

Sometimes “I don’t know” is the best answer. This doesn’t mean it will never be known; it just means the team is trying hard to come up with an answer instead of guessing. They always take the time to truly explore all possibilities to help me live well.

8. Allow tears.

I’m human and this disease doesn’t play fair. So tears of grief, sadness, frustration, anger, fear and even wallowing are all allowed in the clinic. Each one is met with empathy and compassion. However, tears of joy and triumph are equally accepted and encouraged.

9. Finally, and perhaps best of all, understand acceptance is a fluid process.

They understand chronic disease and rare illness models, and somehow they know how to integrate that into the ebb and flow of my life. Sometimes that acceptance comes easier in times of reprieve from the burden of this disease. Other times that acceptance comes after many challenges before hope begins to surface. Regardless, the clinic team employs a mixture of patiently waiting and gently pushing to help acceptance of this disease over and over again; a gift that helps me to keep going each and every day.

It is my hope that other teams can begin to learn from my team. The potential of patient-centered care and empowerment may depend on it!

Lead photo source: Thinkstock Images

319
319
JOIN THE CONVERSATION

4 Reasons Not to Ask ‘What Happened?’ Because I’m Using Crutches to Walk

253
253

I have cerebral palsy (CP) and recently had a baclofen pump placed last July. I currently use crutches to walk and wear an abdominal binder brace. The brace is due to my most recent surgery and isn’t something I’ll wear forever. It’s just until I heal. I’m currently walking slower due to the surgery as well, which leads me to this story:

My brother and I were leaving our small town Dairy Queen when a middle-aged man approached and insisted he hold both doors for me. I appreciated the gesture, but here’s where things went wrong:

Man: “What happened to her?” (Looks at my brother.)

My brother: He doesn’t speak and looks at me.

Me: “I had surgery.” (It was easier to say this instead of explaining CP and then the surgery.)

Man: (Looks at my brother.) “I’ll pray for her.”

First, thank your for your prayers, sir. Second, does anyone else see the problem? No? Here, I’ll help.

1. Nothing has “happened” to me.

Honestly, nothing has. I was born with CP, it didn’t just happen. Second, you’re assuming something has happened because I’m not walking or moving in a “normal” way according to society. Stop. 

image1-001

2. It’s really none of your business.

I’m not trying to be rude, but it’s true. I don’t feel like I should have to explain to a stranger what I deal with as far as my health is concerned. I don’t ask people why they wear glasses; I assume they need them and move on. You don’t get to know. My family and friends know. Just as I don’t know about your personal health, you don’t get to know mine.

3. It’s rude.

What if I went through a traumatic accident and didn’t want to talk about it? Or what if I only had a couple of weeks to live? I can assure you I wouldn’t want to answer your question then.

4. My crutches don’t make me deaf or nonverbal.

Come on society, why are we still assuming that people with disabilities can’t do things? Direct your question at me if you have to know “what happened.” Speak to me. Yes, I realize there are people who can’t answer for themselves, but don’t assume that right away. Give them a chance. Acknowledge me as a human being if you’re going to question my ability status.

OK, I’m aware some people are curious or aren’t sure what to say. But that doesn’t make it OK for you to ask. But if you do feel the need to ask, it’s still better to stick with “What happened?” rather than “What’s wrong?” When people ask the latter, it really stirs up a fire.

Follow this journey on Simply Complicated Megs.

253
253
JOIN THE CONVERSATION

To the Man in the Barbershop Who Called My Autistic Son a 'Sissy'

169
169

“Don’t you dare call my autistic son a ‘sissy!’”

These are the words I wish I’d uttered on that particular day. It was a sunny, beautiful Saturday afternoon — made even more beautiful by the fact that it was my youngest child’s birthday. Five years old! We had plans for a fun-filled day that was going to be spent doing things he enjoyed, and I was so excited. Maybe more excited than he was!

My brother-in-law planned to give the birthday boy a haircut, but I ended up having to take him to a barbershop instead. I was disappointed because he does a great job cutting my son’s hair. His approach is gentle, slow and explanatory, and he’s willing to let my son take breaks if needed. It’s difficult to find people who are similarly accommodating, especially on short notice. So I called the barbershop I use for my older boys, explained the situation, made an appointment to arrive within the hour and hoped for the best.

En route to the barbershop I explained to my son what was happening so he could be prepared, and I asked him what I could do to make him feel more at ease when it was his turn. When we got there, I was ushered over to a barber. I said I was the one the owner told him about, and I introduced him to my son. I explained I would sit on the chair and my son would sit in my lap for the duration of the haircut because he wasn’t comfortable sitting on the chair alone. I also explained the following:

  • The apron used to protect clothing from falling hair not be fastened too tightly around my son’s neck.
  • My son requested I sing songs from various Disney Junior shows during the haircut to help keep him calm.
  • My son would need to inspect and “test” the electric razor against his hands before allowing the cutting to begin.
  • Only I was to hold my son’s ears down when we got to the part of the haircut requiring that, not the barber.
  • Throughout the haircut, my son needed the barber to explain what was going on and to pre-announce any changes, like the need to pause and switch to a different razor.
  • If it got to be too much we might need to stop, even if the haircut wan’t “perfect,” just as long as it still looked decent.
  • Regardless of all of these precautions, my son would probably still cry.

He listened and told me he was fine with all of that. I said a quick prayer, and then we took our seats and got started.

It’s important to me that I always respect my children’s privacy, so I won’t go into specific detail about how my son reacted during the actual haircut. I don’t believe in “live tweeting” or otherwise describing for others the difficult moments my children face and what they might do/say when they’re having a hard time and are not at their best. Let’s just say it wasn’t the best experience of his birthday. Let’s just say it totally sucked. And if not for the fact that he was really overdue for a haircut, I would have preferred that he not even have to go through it.

But my son’s reaction is far from the worst part of this story. That would instead be a person who was waiting there to get his own hair cut. I don’t know the name of this male presenting person, and I have never seen him before (and I hope to never see him again). Let’s just call him Mr. Ableist Sexist Jerk, or Mr. ASJ for short.

Mr. ASJ took it upon himself to bully a little child. A child who was clearly in agony. A child he did not know and had no right to address in such a way. A child many decades younger than he, and a child with a disability who was not in a position to defend himself.

I’ll just give you the highlights of some of the “lovely” comments Mr. ASJ felt the need to hurl at my 5-year-old child.

“Hey, you need to stop all that crying. That’s too much crying. Nobody wants to hear all that.”

“Are you a little boy? I don’t think so. Maybe you’re a little girl. Because a boy wouldn’t be crying like that. I think you must be a girl, huh?”

“Stop acting like a sissy. Only sissies cry for no reason. Haircuts don’t hurt.”

I didn’t realize what he was saying nor that he was addressing my child; not at first. My concentration was primarily on my child and trying to keep him comfortable. Then the barber cutting my son’s hair stopped what he was doing, stood up tall and said, “Man, you need to quit hollerin’ at a child like that. This boy isn’t bothering you so you need to leave him alone. He’s a boy with autism so you don’t know if it’s hurting him or not. He’s my customer and you need to show my customer some damn respect in here.” To which Mr. ASJ said,

“That boy doesn’t have autism. I heard him talking. He’s just a mama’s boy.”

That’s when it dawned on me that the tirade, which I had ignored, had been directed at my baby boy. And that though I hadn’t been paying attention, the barber had heard it all, gotten upset and was speaking up to defend my son.

I am generally a nice person. I consider myself pretty tolerant and I give people a “long leash.” But when I get mad, I get mad. There is some truth to the phrase, “Hell hath no fury like that of a woman scorned.” And then to add insult to injury you are messing with my child?! Oh heck no. I could feel the anger rising up in me as I prepared a retort in defense of my child. It was about to be on.

And just then my son’s tears, which had subsided for a short while, resumed. Louder and with more fervor. In that moment I abandoned my plan to give Mr. ASJ a piece of my mind and turned my attention back to my son. I began singing to him again and slightly rocking him the way he likes, and telling him I was proud of him, I loved him and that he was doing a great job. I told him we could stop the haircut any time he liked. The barber joined in with me, telling my son, “You’re such a good boy! You look sharp too! Wait till you see your haircut. Almost done now.”

I sincerely doubt Mr. ASJ will read this, but in case he does, this is what I wish to say to him:

I’m the mother of the autistic little boy you were bullying on Saturday. I want to thank you for being a living example of everything I’m teaching my son not to be.

Like the barber told you, my son is autistic. Just because he can “talk” doesn’t mean he isn’t autistic. He has a disability, and he was crying because haircuts are difficult for him. Instead of you being sensitive to him like every other person in the shop was, you made it worse. I’ll have you know that calling my child a “mama’s boy” isn’t the insult you meant it to be. I am his mama, and I’m proud to have my boy’s back all day every day. I’m raising him to be a strong black man.

A real man wouldn’t yell at a child. He would comfort him. A real man knows there’s nothing wrong with crying. He knows there’s nothing wrong with being a “little girl” and doesn’t think that calling someone a “girl” is some type of slur.

You know what else a real man knows? He knows that to call an autistic boy a sissy is the height of disrespect. It’s rude (and homophobic, for that matter) to call any boy a “sissy.”

There’s nothing shameful or wrong with a child expressing their feelings nor with a mother comforting her child. I’m raising my son to know that when he’s hurt or scared, I’m there for him. I’m not ashamed of being that type of parent, and I won’t let you make my son ashamed of it.

Follow this journey on Just Being Me…Who Needs “Normalcy” Anyway?

Lead photo source: Thinkstock Images

169
169
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.