Living With a Loved One’s Traumatic Brain Injury

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In December 2001, I answered the phone to hear news every wife fears. Bradley, my husband of three years, was in a motorcycle accident on a country road. He was in serious condition with a traumatic brain injury (TBI) and was being flown from our small town to a big city hospital an hour away. My stomach was in knots as a friend drove me to the hospital.

At the scene of the accident, Brad was having seizures and fighting the paramedics. They sedated him for the helicopter ride to the hospital. After being admitted, he broke the restraints that held him to the hospital bed and was now wearing heavy-duty cuffs. All of this can be “normal” for a traumatic brain injury, even though the words normal and brain injury don’t belong together.

Bradley was wearing a motorcycle helmet and armored clothing. He didn’t break a single bone in his body, but his brain rattled around inside his skull, bruising and tearing sensitive tissue.

He was heavily sedated for a few days, and upon waking up, he wasn’t the man he was before. He spent 28 days in the hospital and in-house rehab therapy for his injury. Thankfully, he didn’t need surgery because the internal swelling went down on its own. On the downside, Brad could not talk, walk or think properly.

A stroke is a kind of brain injury. Brad’s brain injury was brought about by outside forces, not a battle within like a stroke, but there are similarities. Stroke victims may have to learn to walk, talk and think again. Brad had to relearn all of these things, too. For him, much of it was still floating around inside his head, but the pieces were not connected.

He would brush his teeth six times in one morning because he didn’t remember brushing them. His short-term and long-term memories were affected.

His dreams were real to him. The science fiction books he loved were coming to life. One night, Brad was worried to the point of tears about my safety because “the robots” were out to get us.

He could not understand where he was or why he was there. Rehab had to put an alarm under his bed for his safety. When he got up, the alarm went off.

When we came home, Brad was improving a little every day. He continued outpatient therapy for a month or so, but that was as long as our insurance would cover it. We drove an hour each way to therapy to make sure he was receiving the best care.

Over the years, I’ve asked myself these three questions, which may be helpful to you if you have a loved one with a TBI:

1. How does a person live with a TBI?

Never give up. People who don’t know my husband would never assume he had a TBI. Eventually, he went back to work. It’s crazy how the brain works, but he didn’t forget how to do trim carpentry. That doesn’t mean it went smoothly. Brad’s father and brother were there for him, as was his hardworking employees.

His long-term memory was deeply impacted. As years go by, he forgets more and more of our time together. Brad knows people who remain close to him, but if we lose track of individuals for long periods of time, he forgets about them.

Brad is better at math and is claustrophobic after his TBI. How is that for weird? I’ve known this guy since we were 11. I mean, we were close growing up. We have been best friends for 25 years. Brad is different after his TBI. A couple of our friends said he was sweeter. He has always had a sweet spot for me, so I don’t know about that one.

Brad worked hard for nine years after his TBI. Yes, nine years. There were so many things that happened behind the scenes that I won’t share. It wasn’t easy for anyone. Unfortunately with Brad’s brain injury, as time passed he developed more problems or maybe he just couldn’t hide them anymore.

TBI victims are also prone to dementia and Alzheimer’s disease. Brad was having complex partial seizures in his frontal lobe. This caused aggression, disruptive behavior, anger, swearing and black outs. The more stress he was under, the more seizures Brad experienced. After particularly bad ones, he would be drained of energy and have headaches and dizziness for a week at a time. We needed the help of family and friends to get through those times. We had to make changes, especially Brad. They included:

Avoiding anything that causes seizures or blackouts. For Brad, this was dehydration, becoming over-heated, hitting his head, energy drinks, alcohol, overexertion, strong chemical fumes and the worst and hardest to control, stress.

Taking medications as needed. Some can have side effects but sometimes it’s necessary. We went through several medicines before we found what helped Brad.

See your doctors. Rehab doctors, psychiatrists, psychologists, therapists and family doctors can all help, especially if you have to apply for Social Security Disability Insurance.

Cutting back on work. Brad went from running a company to working part-time and this still wasn’t enough. He had to sell his company shares to his father, leave the business and apply for SSDI or disability. Then we declared bankruptcy, finally moving to Mexico, where our life is much simpler and calmer.

Realize your limitations and accept them. For Brad, this has been the hardest part of this journey, but with humility and sacrifice come blessings and happiness. Eventually.

2. How do I live with Brad’s TBI?

Same thing: never give up. Sometimes you want to but you can’t. When we were living in the U.S., I had therapy, which helped me cope. Since moving to Mexico, I have been able to function with a lower dosage of medication and don’t need therapy. My panic attacks are practically a thing of the past and the bad dreams are lessening as well. Life is going on and it’s not leaving me behind.

I love my husband and our beautiful children. I love Mexico and our new life here. I’m happy Brad is realizing his limitations. He’s a good husband and father. Things can always be worse. The TBI could have dealt us more damage and pain. What more can I ask for than what I have now?

3. How should you view a TBI?

With care. Remember the following if you meet someone with a TBI or if someone you love has a TBI:

  • A TBI is a serious injury. 
  • It may be a disability for this individual.
  • Their personality may change. This can be good or bad.
  • They may say or do things that don’t make sense. They may lose their filter between their brain and their mouth.
  • Don’t treat this person differently. Give them the respect they deserve.
  • Don’t let this person mistreat you because they have a disability. It’s not an excuse for bad behavior, although it may be a reason.
  • Their life isn’t necessarily over and neither is yours. Never give up.

Traumatic brain injury can be hard to understand. For one thing, no two brains are alike and no two injuries are alike. The brain is the world’s coolest and most advanced super computer. It can’t always be fixed, and it doesn’t always heal correctly.

It’s an injury everyone needs to be aware of. You can’t assume a person is drunk or has a mental illness because many times a TBI will present itself like drunken behavior or a mental illness. A doctor once told me that the TBI was a past injury. Perhaps, but I live with its scars every day and I’m only the wife. Do you know what my husband is going through? A little understanding can go a long way.

Tina Marie Ernspiker the mighty.2-001

Follow this journey on Los Gringos Locos.

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What I Didn’t Know About PTSD At 15, and What I Know Now

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I’m 15, out shopping with a friend on a gorgeous summer day in northern Michigan. We are both wearing crop shirts, short shorts and platform heels. Our blonde hair sways rhythmically with each step, and we pass a couple who look about age. The couple was happy, in love, and not shy about publicly displaying it. I saw a pretty graphic display of affection that, at 15, made me extremely uncomfortable. I responded the only way I knew how: with humor. I leaned into my friend, laughing hysterically, and said, “Oh my God, I have PTSD from what I just saw.”

15-year-old me didn’t know anything about post-traumatic stress disorder. In my mind, it was a phrase casually thrown around, used jokingly to describe an unpleasant event that evoked uncomfortable emotions.

15-year-old me was insanely ignorant.

PTSD is a silent killer. PTSD is not a joke. PTSD is an extremely debilitating, life-altering physical, mental and emotional condition that affects about 8 million adults during a given year.

It’s sneaky and complicated, hiding behind other diagnoses like depression, anxiety and addiction. It doesn’t like to be seen and doesn’t like to be held responsible for the havoc it wreaks.

I haven’t wanted to write about PTSD because its complexities are hard for me to comprehend. I’ve been living with PTSD to varying degrees for more than 20 years and still don’t understand it all. But maybe that’s the point.

I know a lot about PTSD. My background in psychology has given me a very good understanding of what happens physiologically and psychologically when PTSD is activated. When I’m triggered, my brain disconnects from my body. My body feels a sensation similar to what it felt at the time of the trauma and thinks I’m reliving it. My concept of time is lost.

When my husband touches the back of my leg, my brain thinks I’m 19 and being raped. My brain can’t process the fact 12 years has passed and I’m in a safe place with a safe person. My body remembers but my brain forgets. I’m disconnected and pulled out of what I’m experiencing. It throws my body into a fight/flight/or freeze state. I have to give my brain time to catch up with my body and realize I’m not 19. I’m not in danger.

I know a lot about PTSD. I know how the brain and body work when they’re triggered. But knowing about PTSD is not the same as knowing PTSD. I don’t know my PTSD. I don’t know why it works the way it does. I don’t know why, after 12 years, I’m having flashbacks of scenes I have no previous recollection of. I don’t know why my husband can’t touch the back of my legs. My brain can’t make sense of it because my brain doesn’t remember. But my body does. My body remembers something happening to my legs. My body remembers what my brain can’t.

My body remembers everything. I used to think that was the problem. If I could only get my body to forget, I’d be OK.

But what if my body remembering isn’t the problem? What if that’s the solution? I have a heightened sense of awareness because of the PTSD. I used to think was a curse. I hated that my body felt so intensely. But maybe the solution doesn’t lie in my ability to think but rather in my ability to feel. Awareness, not understanding, might just be the key to freedom.

I hesitate to share this because I’m still in the midst of this journey. The thoughts I have today might be irrelevant tomorrow. But one thing I know for certain is that my PTSD, and yours, wants to stay silent. It wants us to keep it hidden. It wants to stay masked behind other issues. It lives and breathes off of our denial. Continuing to talk about it, especially when I feel like I don’t understand it, and giving it a voice, even when I don’t have the words, is helping raise my awareness.

And awareness, in this moment, feels like a pretty safe place to be.

Follow this journey on Feelings and Faith

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8 Special Olympics Athletes Give a Pep Talk Everyone Needs to Hear

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The Mighty spoke to eight Special Olympics athletes and asked, “How does someone achieve their goals?”

The result is this motivating, pep talk. Take a look:

Video transcript:

1. “Stop hiding in the shadows. The sky’s the limit. You must always dream and dream high.” — Mompati Goabakwe (Botswana, Soccer)

2. “Make your best effort.” — Christian Rodriguez (Costa Rica, Golf)

3. “Give your best.” — Janine Schwirblatt (Germany, Equestrian)

4. “Fight for your dreams.” — Marvin Tello (Guatemala, Golf)

5. “It’s never too late to start.” — Natanael Chavez (Guatemala, Golf)

6. “Play sport. Play hard.” — Viren Mehata (Zimbabwe, Golf)

7. “Just not to worry, not to get too stressed out.” — Jennifer Maddox (US, Equestrian)

8. “Your confidence should be up here. You never want to boost confidence too much. Give the right confidence and always look ahead and move forward.” — Tess Trojan (Canada, Golf)

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10 Positive Things I Learned While Dealing With My Son’s Terminal Illness

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In today’s society, it seems like a lot of us tend to focus on the negative. It’s easy, right? There are so many negative experiences that happen in our day: I hit a standstill in traffic on the way to work or they were out of that one item I needed at the store. My 3-year-old decided, yet again, he would pull out the markers from that high, out-of-reach place where I hid them — I swear, he’s a monkey — and make his skin blue, green and red! We see it on social media all the time about how things went wrong.

My son was 21 months old when he was diagnosed with high-risk pre-B acute lymphoblastic leukemia. We — it was a joint family and community effort — battled his cancer for just over three years, including two relapses and three experimental treatments, before we were told there was nothing more they could do.

Ethan passed away in October 2014, not even a month before his fifth birthday. Sounds like a negative experience, right? Well, it wasn’t something I would ever want to do again, and I wouldn’t wish it on anyone. But there were many positive experiences that came from being a part of this club we never wanted to belong to. These are only some of the positive things I have learned while dealing with my son’s terminal illness:

1. I realized the little things just don’t matter.

There are so many little things we worry about. So you have to run to one more store to get that missing item. At least you can get to the store. You’re out of time and can’t get a decent meal on the table. Oh well, leftovers, peanut butter and jelly or even cold cereal will do. In the grand scheme of things, none of this really matters.

2. I learned family is everything.

When you’re in a hospital and spend so much time away from your spouse and other kids, you realize how much you love them. The times spent together become priceless and irreplaceable.

3. I learned caring people can come out of nowhere.

Our family was the recipient of many anonymous gifts. Cookies on the doorstep, gift cards to a restaurant, money for Christmas, toys for our sick Ethan and his siblings and many, many more.

4. Because of all of these caring people, I learned I really can make a difference.

I understand a card in the mail can change a person’s day. A phone call just to see how things are going can let someone know I care about them. It doesn’t have to be big, but I can make a difference.

5. I have learned to be more empathetic to other people’s situations.

Sometimes, those of us with children with disabilities can get upset with someone who doesn’t understand our situation. The truth is, I didn’t understand it either until I lived it. Just as I don’t understand what it would be like to send my husband off to war or to live in a poverty-stricken country, I don’t fully “get it” because I haven’t lived it. We shouldn’t expect any more from others.

6. I believe I have learned to be more faithful and willing to accept God’s plan for me.

That doesn’t mean I wouldn’t give almost anything to have my Ethan back, but I have also seen the way he was able to touch people’s lives and change them for the better. And I have seen how this trial has shaped and molded me and my family into better people.

Jennifer VanLeuven the mighty.2-001

7. I have made many new friends the past three years who helped my son battle cancer, including other cancer moms and people in my community and throughout the world.

Our family had the opportunity of being in the media spotlight for a week or so preceding Ethan’s passing. His story was aired from China to Brazil to Australia. Because of this, we have had many people who we’ve able to keep in touch with. So many of them continue to be a source of strength and inspiration for our family.

8. I’ve learned that I can do hard things!

Life is hard, it really is. But I believe with God at my side, I can persevere and come out on top. Now those other challenges in life don’t seem quite as intimidating. Goals don’t seem so far out of reach, because I have faith in myself that I can keep going.

9. I have come to appreciate the kindness and sacrifices of loving doctors and nurses.

I have watched as doctors and nurses have nurtured and cared for my Ethan. I have seen them gently talk him into staying strong for yet another neupogen shot or make taking medicine into a game. I have seen them sit at his bedside so I could finally get something to eat. I have seen them cry with me while we faced other challenges at home and as we set up hospice for him. This isn’t easy for them. They could put up a wall so they wouldn’t get hurt, but they didn’t. They serve, they love and they care. They are heroes.

10. Last but not least, I have learned to enjoy each moment as it comes.

When your 3-year-old colors himself with markers, smile and take a picture. There’s someone out there who wishes their 3-year-old were healthy enough or even around to be mischievous. When you’re running yourself ragged to get your kids everywhere they need to be — I have seven kids, so I know the run ragged feeling well — be grateful you have them there to keep you busy. When you have those rare moments of family time or when you’re all together and happy, savor those moments and lock them up in a place you will never forget. You never know if you’ll get that moment again.

We each have a choice. Everyone has challenges they are faced with. None of them are easy. I would have never chosen to have to watch my child suffer for three years and eventually have to bury him, but we can either choose to see the silver lining or dwell on the negative.

Sure, there are moments we may need to break down and cry. There are times we don’t feel like we can take it anymore. But if we can pick ourselves up, dust off our pants and try to see whatever positives we can, it can heal us and give us strength to move forward. It can give us peace in the midst of a heartbreaking circumstance. It can show us the good in others and even the good in ourselves.

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When This 8-Year-Old With Cancer Sent an Audition Tape to the WWE

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Elijah Mainville has been a WWE wrestling fan his entire life.

The 8-year-old, who was diagnosed with neuroblastoma when he was 3, even sent an audition tape (video below) to the wrestling league’s “Tough Enough” reality show in May 2015. The show selects candidates to undergo rigorous wrestling training and compete to earn a contract with the WWE.

Elijah’s tape impressed the WWE so much that the league went a step further than giving him a spot on the show. WWE officials Stephanie McMahon and Paul Levesque (who goes by “Triple H” in the WWE world) brought Elijah into the ring to present him with an honorary contract at the league’s “Monday Night Raw” competition in San Jose, California, on August 3, Fox Sports reported. Elijah’s favorite WWE wrestler, Cody Rhodes (now known as “Stardust” in the ring), also attended the contract signing.

Every good WWE superstar has a catchphrase. Do you have a catchphrase?” Levesque asked Elijah amid cheers as he presented him with his contract.

“Don’t fear the darkness. Fear the shadow!” Elijah, whose superhero name is “Drax Shadow,” bellowed out to the crowd.

Watch the touching contract signing ceremony in the video below.

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5 Things a Prenatal Test May Not Tell You About Your Baby

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This wasn’t the first time I found myself comforting a pregnant momma whose doctors have diagnosed a problem with her unborn child. Prenatal tests indicated her child to be imperfect and that termination would be in the family’s best interest. I’ve experienced these conversations before. The doctor will provide all of the medical and cognitive complications that will very likely be present at birth.

I have no issue with doctors presenting the facts to parents so they can make an informed decision. Families make these impossible decisions every day. My only issue is that doctors can’t inform any parent completely. Their prognosis can leave out extremely important factors parents should know.

I have the privilege of knowing several children whose parents were given that same advice. These children have undergone multiple surgeries, and their families have faced many challenges to keep their children’s lives going, literally and figuratively. Those parents and their sweet children, along with my own, testify to the “facts” of being a special needs family that a medical prediction doesn’t include.

For the benefit of my sweet friend who is now facing this decision, I’ve compiled an incomplete list of things your child’s diagnosis may not tell you:

1. A child with special needs can change your life for the better.

You can discover places in your heart you never knew existed. They’re like untapped fountains that can only be opened by a child with special needs. I know special needs parents who have found their life’s calling wrapped up in this journey.

2. A child with special needs can unleash the fighter inside you that you never knew existed.

You can become stronger, more fierce and every area of your life will be affected forever. You can attain a new level of toughness and resiliency.

3. A child with special needs can impact their siblings forever.

Siblings of children with special needs are among the finest human beings you will ever meet. They’re the torchbearers to future generations of compassion, understanding and inclusion.

4. A child with special needs can take your faith to depths you never knew existed.

I believe there will be moments, dear friend, when it’s just you and your creator. I believe these moments will transform your faith like nothing else can.

5. A child with special needs can bring joy that can’t be explained.

The tiniest achievement — a roll, a smile, a step, a word — can bring you a profound joy that will live inside you like a lamp oil that doesn’t run out.

Dear friend, I believe every child is a gift. A child with special needs bears treasure for their parents, siblings and all who know them. My special guy has an impact on the world around him every day.

Other than my own children, my favorite kid in the universe is Lucas, whose photo accompanies this post. His parents found out their unborn baby was missing half of his heart. Once born, Lucas was rushed through multiple surgeries. Eight years later, he’s the most wonderful, sweet, loving and courageous boy I’ve ever met.

His parents still find themselves in the hospital frequently. They still face uncertainties on a regular basis. But what none of the doctors could have ever explained is that they, like so many other special needs parents, wouldn’t have changed a thing. Let this post complete the full picture of what you face so that whatever decision you make, it is fully informed.

Melanie Gomez the mighty.2-001

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