TBI-Infographic

March is Brain Injury Awareness Month

March is Brain Injury Awareness Month, and as someone who lives with a brain injury, I feel like I would be remiss if I missed the opportunity to help educate the public. I’ve written about this before, but it’s time to do it again.

My injury occurred December, 2010. I was trying to prevent a fight in the school’s computer lab, lost my balance, fell, and hit my head on a computer table, as I went down. It took several months, and many conversations with students before I fully realized what had happened. At first, I thought I had hit my head once and had remained conscious. Over time, I learned that I actually hit my head twice – once on the table top and once on the metal leg brace – and lost consciousness momentarily.

At the time, I was training for my very first triathlon. I rode my bike 3 miles to the city pool every morning and swam 1 mile before riding through the parking lot to my teaching job. My teacher friend, Molly, ran every day with our students, while I rode along on my bike. That week, I think we were up to 8 miles. After school, I would ride my bike home, stopping for any quick errands I needed to run.

The day of my injury, I didn’t ride my bike home. I had to wait for school to let out, and then have my daughter Tori pick me up and take me to the doctor. Everyone figured it was a “bump on the head” and my life would return to normal shortly. That is, after all, what we are all raised to believe from books, movies, and TV shows.  That, however, is not reality.

I was diagnosed with “mTBI” or mild traumatic brain injury. The “mild” simply means consciousness was only lost momentarily, if at all. Many mild injuries also don’t result in bruising, bleeding, or swelling in the brain. They shake the brain, damage nerves and neural pathways, and cause many issues that may not immediately be attributed to the brain injury.

While every injury is different, these are some of the main symptoms found even in a mild injury:

  • Headache
  • Fatigue
  • Sleep disturbance
  • Irritability
  • Sensitivity to noise or light
  • Balance problems
  • Decreased concentration and attention span
  • Decreased speed of thinking
  • Memory problems
  • Nausea
  • Depression and anxiety
  • Emotional mood swings

Interestingly, some of these take some time to show up, and some hang on longer than others. I’m lucky, and so is my family, that I haven’t had any real issues with irritability. I think that has made everything else a lot easier. Fatigue seems to be my primary focus. I feel like even saying that makes it sound like maybe I should “just get over it.” But here’s the thing…See that whole list of symptoms? If I get worn down, all of those issues are worse.

So many things that used to be automatic, now take my full concentration. I use an electric toothbrush at home, but a manual toothbrush if I’m travelling. I recently visited my dad, and every single morning found myself waiting for my toothbrush to turn off. Just today, I got lost in town because I couldn’t remember how to get to Angel View. This is more involved than it may initially sound. Angel View was the go-to thrift store in Palm Springs for years. I’ve been in Monroe, WA for 2 years now, and we don’t have an Angel View. We have a Goodwill. I could have driven around forever looking for Angel View. I finally drove past the big Goodwill sign, and remembered that was actually what I was looking for.  All that thinking and forgetting and remembering takes a lot of effort, and wears you out fast. Think about if you’ve ever had to take a long, difficult test. The level of concentration that required, is the level of concentration I require to get through the day.

I wear rings to help prevent myself from chewing and tearing at my fingernails. I read book series to help keep track of characters. I don’t remember peoples’ names (something I used to be very good at), and sometimes I walk away from a conversation and don’t realize until later that maybe the conversation wasn’t actually over. I have what’s called “emotional lability,” which means I may break out crying at any moment, for no reason. Some people also have uncontrollable laughing, but I haven’t had that yet. I have to read the aisle signs at the grocery store to find what I’m looking for  At the end of every aisle, I have to take a minute and look both ways to determine where I am in the store. I’m also more sensitive. I went to the wrong car in the parking lot one day, and a lady chuckled at me a bit. She wasn’t being unkind, and I’m sure she meant no harm, but that didn’t matter at the time. I was devastated and sobbed the all the way home because “that lady laughed at me!” I have panic attacks, and some days don’t get out of bed because it’s just too hard.

If you look at me, or any other brain injury patient, it’s easy to think, “she looks fine.” Think about it. Most of the things I’ve just described, nobody is going to notice. If I’m going to start crying, I remove myself from the situation. My family keeps an eye on me, and helps me out if I get in a jam. Brain injuries are one of those “invisible injuries.” If you know someone with a brain injury and they seem fine one day, but the next day tell you they can’t do something, they aren’t faking. That’s just the way it works.

The life we’ve built since my injury is not something we ever thought we’d be doing. The dogs wake me up every morning, then I’m greeted by the alpacas, chickens and ducks. I feed everybody, collect eggs, and work on whatever project I’ve taken on. I’m surrounded by peace and beauty. Unless the grandbabies are visiting – then I’m surrounded by giggling, chattering, hugs and kisses.

Many brain injury patients lose their friends and families, because it’s so difficult to understand somebody who doesn’t understand themselves. Years ago, I joked that Charlie was like my own personal seat belt. Today, that’s even more true. He takes care of me and protects me in difficult situations, but still ensures I can do everything I want to. I’m so lucky that the people in my life have taken the time to learn what I need, and stood by me, and we’ve worked together to build a life that is truly a blessing.

For more information about brain injuries, visit this website:

http://www.biausa.org/living-with-brain-injury.htm

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Four Years Out

December 7 is a day most people remember as Pearl Harbor day. For me, it was a different type of life-changing event. Today, it has been 4 years since my brain injury. I don’t remember 12/7 because of Pearl Harbor, I remember 12/7 because my birthday is 7/12. It’s always seemed ironic to me that the day my life got flipped around is the flip-side of my birthday.

I’ve talked to lots of brain injury patients, and have learned that, while everybody’s recovery is different, there are many things that are the same. Many of us experienced what the medical community calls “Mild” Traumatic Brain Injury. When I first received the diagnosis, I thought, “Cool. OK. It’s mild, so it will go away soon.” That’s not exactly how it works. The term mild simply means the person either didn’t lose consciousness, or was only out for less than a couple of minutes. There isn’t necessarily bleeding in the brain, and it isn’t necessarily life threatening. All of those are good things. Those can also be the bad things.

When diagnosed with something “mild” it’s very hard for the injured person, as well as the people around them, to fully understand what is happening. In movies, books and on TV, someone gets a knocked out, and they’re back up to speed in no time. In reality, several different things start happening.

The list includes, confusion, short-term memory loss, balance issues, specific weakness, vision problems, easily overwhelmed, fatigue, depression and anxiety. “Emotional lability” is especially fun – rapid, often exaggerated changes in mood, where strong emotions or feelings (uncontrollable laughing or crying, or heightened irritability or temper) occur.  The laughing for no apparent reason could come across as quirky, or maybe inappropriate. I get the crying for no reason. It’s really hard to convince someone that absolutely nothing is wrong when you’re sobbing like a toddler having a temper tantrum.

The first couple of years, I waited for the symptoms to go away. By the end of year two, I was devastated that I wasn’t all better. Year 3 was spent learning how to work within my new limits. Now, by the end of year 4, I’ve settled into my new normal.

One day I may remember something, then the next I don’t. If it’s important I write it down. If it’s really important, Charlie makes sure he can remind me, and he does this tirelessly. The bad part is, I sometimes forget things that I really needed to remember. The good part is, I can save lots of money on books, because I can read the same ones over and over and never know how they end.

My left side is weak. This means I crochet, instead of knit, because it only requires one hand to be coordinated. I spin yarn “backwards,” using my right hand where I should be using my left. Sometimes my left leg doesn’t want to go the direction I want it to, so I may stumble backwards or sideways. Fortunately, I’m right-handed, but I’ve still had to learn how to work around my left side.

I can’t watch movies with too much action, and 3D is totally out of the question. Windshield wipers even get distracting, if they’re moving too fast. I can’t drive at night because the lights are too much, and sometimes the world goes “flat.” If I’m playing solitaire on the computer, I have to look away when the game is over and the cards go flying all over the screen. I spend a lot of time looking away from things or closing my eyes. It’s fairly automatic now, and not something most people would notice.

Initially, I got lost quite a bit, even in familiar places. That still happens, but I don’t think it happens as often. Hard to say. I’ve gotten used to not always recognizing where I am, so I don’t panic about it anymore – usually. Every trip to the grocery store is like visiting a store in a new town. I read every sign in every aisle, and sometimes I wander around trying to find something simple like milk. This is the grocery store I visit at least once a week. If I happen to be driving, and don’t know where I am, I either keep driving until something looks familiar, or pull over and enter the home address into the GPS.

Charlie can read my face like nobody else can. He knows when I’ve had too much, and need to leave, or take a nap, or just have a little break. When I’m frustrated or aggravated because I’m having trouble learning something new, he’ll remind me that I’ve learned part of it, and to just keep trying. Or, to put it away for awhile and come back to it later. He knows what I can and can’t do. He knows when to push, and when I need to quit for awhile. He makes sure my world is safe, and works so hard to provide this new life I love. Most people won’t see me on a bad day, so they don’t get that it’s not always easy. Charlie gets me through all of it.

For quite some time, things were hard, and we needed to make a lot of adjustments. The doctors don’t expect there to be much more improvement. In their terms, I’m “permanent and stationary.” Despite the challenges, I love my new life, and couldn’t want anything more. Without this injury, I wouldn’t have this life. I hope that people who are at the beginning of this journey understand that it does get easier. I hope that people who are caring for someone with a brain injury understand how important they are.  More than anything, I hope that Charlie knows how much I love him and appreciate everything he does to make Redmon Woods my safe, magical place.

 

Brain Fade

Sometimes I wake up and know the day is going to be full. There’s that feeling of dread and panic as I try to figure out how I’m going to get it all done. This is one of those days. I make lists in my head, take  a deep breath, and roll out of bed. What has me so overwhelmed this morning? Charlie asked if I would make beef stew tonight.

I’ve been really busy this past week and let myself get run down. Since my brain injury, I know I can’t let that happen. When fatigue sets in it makes everything difficult. Words are difficult to find. Decisions are difficult to make. Something as basic as getting dressed is difficult!

Charlie does most of the daily cooking. I like to take on the bigger projects like lasagna and enchiladas. I love baking yummy treats for everyone to enjoy. When Charlie asks me to make something he likes it makes me happy. Usually.

Today did not start that way. When I started my morning chores, I felt myself calming down. Shoveling paca poop is strangely relaxing. I tried to remind myself that I had all day to get everything done. Because I was a little foggy last night, I had already taken out the Crock Pot and picked out the vegetables I’d be using. I didn’t want to forget today was stew day. I’ve certainly made stew before. How hard could it be?

Well, it was hard. I had to find the stew meat in the refrigerator. Then, I had to find the skillet in the cabinet under the stove. How hot does the stove need to be to brown the meat? I guess I can figure that out as I go. Now, the vegetables. Should I peel the carrots first, or trim and cut the green beans? What shape and size should I make the squash? Then there was the turnip. It was the first turnip from the garden, and I had never cooked with one before. I’ll just chop it up and toss it in.

As I stood in front of the bowl of vegetables, trying to figure out what to do first, the meat in the too-hot pan started to burn. I turned down the heat and moved the meat to an unscorched pan. Then, I started doing the dishes. What?! No! The dishes can wait until the stew is put together.

One step at a time, I got it done. It only took about an hour, including doing the dishes. Yesterday, or tomorrow, or next week I could have done this in my sleep, while also making bread to go with the stew. Today was not that day. Today it was hard.

*Note: I know some people will read this and think, “Get a grip, lady! Really? There are people who are really suffering!” I get what you’re thinking, but this is how brain injuries work. I look “normal,” and most days I can act normal. The reality, however, is that normal takes a lot more effort than it used to, and some days normal just doesn’t happen.