My Story of Living With a Brain Injury

I am young adult living with the trials and triumphs as a result of a brain injury. This is my story.

Sunday, July 17, 2016

All Kinds of Good People

One of the things that's challenging for with a brain injury is to stay updated about current events and issues.  It is difficult for me to retain what I read and then connect it to something for it to make sense and remember it.  I can read articles about local college football players and games and I can identify specific plays. I have attended games at the stadium, I have watched games on TV, talked to other people about it.  All of these things make it easier for me to connect and retain the info. However, current events or issues are much more difficult for me to understand and apply unless I can connect it to something familiar to me.

Upon the brain injury diagnosis at 21, I developed a desire to watch what other people said and did and to learn from their examples to try to fill in gaps in my own development that had been halted by the injury. I wanted to soak in as much as I possibly could.  Many years later when social media was and is prevalent  I would see many people sharing articles, information, opinions, etc. about current local and world issues.  I have great respect for those who are able and willing to share information and opinions like that. I saw and still see them as being willing to share and stand up for their beliefs and do good in the world.

However, it was sometimes difficult for me that I did share information and opinions like that and do good in the world. (Let me be clear, my perception of actions and self did not come from anything or anyone that was said or unsaid. Sometimes our brains, especially mine, does not always understand something and so our brains will try to make sense of it but it's not always accurate). I struggled at times with wondering if I was a "good person" because I did not go the route of current and politically informed and it seemed like such an important thing to do. I hesitated about posting things like having fun at the water park or new hairstyles I'd found because was that silly when there were much bigger problems going on in the world?

However, one day I realized that the world needs all kinds of good people and it brings peace to accept and embrace that. Pictures of latest hairstyles will not change the world but sometimes we need to see or look at things that don't require a lot of brain power. A picture about a game I played with my nieces could give someone an idea for what to do with their kids. Sharing a beloved scripture could help someone else find peace on a hard day. Bottom line, there is not one definition for a good person and the world needs all kinds of good.  Also, in referencing the struggle I had about discovering to define myself as a good person; I would not trade any of the struggles I've had in my life as that would mean giving up lessons I have learned.

Comments? Questions? Please read and share if you can!

Friday, July 8, 2016

A Successful Day with Brain Injury

First of all, thank you so much to each and all of you who read the last blog post. Your page views and support are much appreciated!

The other day I was thinking about when living with a brain injury, what helps me to be successful during the day? Thus, the inspiration for this blog post was born.  It's not a comprehensive or a compulsive list; they are not all things that need to be done every day.  Rather, it's things that when there is a need and I can do these things, it helps me to be successful. And while everybody's journey with brain injury is different, I expect that most of them would help others with brain injury to be successful, or anybody for that matter!

The night before I go to bed I like to and/or try to do the following:
  • Quick and basic clean up of my bedroom and bathroom. This entails hanging up clothes, putting my makeup away in the drawer, etc.  I do this so that when I wake up I will see clean surroundings. When you live with a brain injury, clutter can quickly distract your brain; making it more difficult to focus on what needs to be done.
  • Place anything I will need for the next day into my bag and place it by the door so that I will not forget it the next day.  
When I wake up in the morning I like to do the following:
  • Simplify! My main goal is to get out the door on time to work as together as I can be. With a brain injury it becomes difficult to quickly process and respond to more than one thing at a time and as a result things can take more time and energy.  Some of the ways I simplify are:
    • Eat school lunch. When I do not have to pack a lunch or remember to bring one, it makes my morning easier and more productive. 
    • Keep extras of what I might need at work. For example, some mornings are just rough and I get behind. It happens! Since I need to leave on time for work, I keep items such as mascara, mini containers of cereal, etc. at work to use as needed. If I am checking emails, I can eat my cereal at the same time.
During the day I like to do the following:
  • If I am going to run an errand to someplace new, directions are a must. My brain does not naturally retain remembering how to get from point a to point b. I need the added support. Also, if I get lost, I am more likely to get anxious, lost, etc. 
  • Make a "to do" list in my phone. The "to do" list is different things. It may be a list of groceries that I need or a list of people I need to call when I get home. For me, putting a list in my phone is the best way to go because it's usually always on me and I don't have to worry about reading my handwriting! Also, when I am typing something and then looking at it, it is easier to remember.
If I am going out late I like to:
  • I am a big believer in the "prep nap." This is for several reasons.  Due to the brain injury, I tend to get tired earlier than many people and once I am tired, I often fade quickly and I want to be in my own bed. Also, I do not do well staying awake in the evening if I am in a dark setting (movie theatre, concert, etc) My brain senses the darkness and it often lulls me to sleep. Also, if the activity is a guest speaker, a lecture I am more likely to nod off. A prep nap can be as short as 20 minutes but I have found that when body gets a chance to really rest I can function better and enjoy the evening much more. Granted, this is not an everyday day activity, just as needed!
What has worked for you in being successful during the day? Brain injury or not.... Questions and/or comments are welcome!

Wednesday, July 6, 2016

Keep Stepping to the Other Side

We are all subject to ups and downs in our lives, no one is exempt! I also wouldn't trade any of those downs in my life because it was all worth it when I arrived at the other side. 

 Two years ago, I was entering my 8th year of teaching and having both successes and learning experiences!  I also  had a new coworker. She asked me, "How do I get to where you are now,  doing what  you do?" I advised her, "You just keep stepping. Keep going. And one day, you'll be on the other side. You'll just be doing it naturally." And a few months into the year she reported to me, "Hey, you were right! I'm doing it!" 

An example of "stepping to the other side" in my own life. Several years ago the man I was dating wanted to take advantage of me and hurt me. It was truly awful and the brain injury didn't help (enough said) but over time I learned to keep stepping and then I'd wake up and find myself closer to the other side. 

The final big step surprised me. For a few years, I'd kept the dress I wore that night. At the time it was intended as a positive reminder to me that I was strong, that I could do hard things, etc. However, one day I woke up and knew that aside from lessons learned; I no longer had any connection to the dress or that night. So, that night the dress was cut up into tiny pieces. And I welcomed the fact that I had kept stepping and come out on the other side.  

Whatever big or small challenge you may face; whether it just involves you or another person. Whether it was a "whoops" moment or you were hurt from another's poor choices. Truly, keep stepping. There is another side and it is glorious.  

Monday, August 3, 2015

Moving Beyond using "Don't Worry About It"

Typically, but not always, a brain injury is accompanied by anxiety. Anxiety that can come hard and fast and it is often illogical but very real to the individual. In large part, this anxiety comes from the brains "executive function" being impacted; the part of the brain that reasons, self-calms, etc.

One of the most frustrating parts of living with severe anxiety or caring for someone with severe anxiety is that it can be controlling and consuming. As a child I was terrified by the idea of being late to school (coming in late, kids looking at me, asking me questions, etc)  and so the time preceding leaving for school, I was near useless to complete tasks, have a conversation, etc even with my mom right there, having the oven timer set, etc.

I approach this as someone who lives with anxiety (today is much, much reduced) but also am educator who spends time with children and anxiety. It can be hard and frustrating to repeat yourself, try to get a child to focus, attempt to reassure without avail. Trust me, I understand both sides! But here is one simple suggestion: avoid using the phrase "don't worry about it" The use of "don't worry about it" is often well-intentioned! The adult is trying to reassure the child, let them know it's going to be OK, the situation is not as bad or severe as it is in their heads. This would be great if a simple "don't worry about it" was all it took for a child with brain injury to calm, to de-escalate, etc. Unfortunately, it's not.

As a child, I hated hearing "don't worry about it" because it did little to calm my fears and it sometimes felt "dismissive" like my fears were not important and nobody was listening to me. Again, I know that phrase was used with good intentions! Here is a simple strategy to move beyond "don't worry about it" and to more effectively calm fears. Add a "because...." To the end of the sentence. For example, "you don't need to worry about (not being picked up from carpool/swim lessons) because I talked to Joe's mom. She knows what time to pick up you and Joe and she put a reminder in her
phone." Or "you don't need to worry about (being late to the game at a new location) because I am planning to leave early in case of bad traffic and I have the directions in my phone and printed out."

Adding "because" is not magic or foolproof but it does help reduce anxiety because it gives children something specific that they can know and rely on and subsequently ease anxiety. If they get nervous again, they can remember, "Mom or Dad are doing this specific thing to help the situation be successful." As an adult, I use the "because" as well. "I don't need to worry about this because I called and talked to this person at this company and" "I don't need to worry about it because the store is open until and I can go...."

What strategies in dealing with anxiety have been effective for you?
Questions/comments are welcome!

Wednesday, July 29, 2015

Benefits of Using Headphones

For me, using Headphones is a fairly standard occurrence because they block out noises and distractions and keep focused on what I need to do. There are two main places where I like to use headphones; when I am using public transportation and when I am at the dentists office.

While on public transit it can be easy for someone with a brain injury to get overstimulated. You are siting in close proximity to strangers. There are several different sounds going on; people talking to one another, people talking on their phones people with headphones and music playing at maximum volume. Having my headphones and listening to something of my choosing helps me to drown out other noises or things that could make me uncomfortable and keeps me focused on enjoying the ride to work.

That being said, using headphones are not automatic. Sometimes the bus or train is quiet or sometimes I do want to visit with the person sitting next to me.  But I like knowing that if the noise level gets too high or if the bus is exceptionally crowded; I have an option to help me deal with it!

The other place I like to use headphones is at the dentists office. The most uncomfortable part of that experience for me is the sounds of the various tools being used on my teeth. Adding to that discomfort are the bright lights and peoples hands in my mouth. When I was young I was always offered a Walkman and headphones to use during the appointment. But as I got older, they were offered to me less and I forgot to ask for them.

Within the past year I started downloading an audiobook on my phone and taking my headphones with me to my dentist appts. What a difference! I can still hear and have an awareness of what is going on but rather than my brain trying to process everything at once while my discomfort level is rising, I am focused on enjoying my book.

How has using headphones benefitted you or someone you know? Questions/comments welcome!

Monday, November 11, 2013


When you have a brain injury between 0-2 years old, like me, making friends can be really hard! Here are some of the reasons why:

  • Reading social cues-knowing the give and take of conversation. When it's your turn to talk, when it's your turn to listen. Recognizing that someone's body language or change in their tone of voice, means that it's not a good time-without them directly saying it. A LOT for the brain to process in a short amount of time
  • Sometimes be causes friends are harder to come by, you might let yourself my used by someone, have them take advantage of your kindness because it's nice to be wanted and needed
  • Anxiety!!! And when anxiety hits, it's more difficult to think clearly, process, take the action you want to take
How you can help to be a good friend-this is for me as much as anyone else, I have work to do, too!
  • Use verbal cues and reassurance. Tell team directly that you do want to talk with them and you will, later but now is not a good time because....
  • Allow them to be involved just like with anyone else. Everyone wants to feel a part of something!
  • Support their interests. When you can, attend a game, concert, etc.
  • Model appropriate social behavior and cues for them. Be a classy friend. 
  • Be patient and try to understand where they are coming from, how their brain is processing and responding, etc.
And a huge thank you to all that are sincere friends, who make me a better person when I am around them.

Sunday, November 10, 2013

Power of an Opportunity

Growing up, not yet knowing about the brain injury, a lot of things were hard for me. I struggled with hand-eye coordination so I couldn't sink a free-throw or advance a lot in playing violin or piano, even though I tried and I wanted to.  Making friends was hard because of reading social cues, figuring out the give and take, etc.

With Thanksgiving approaching, a memory..... Growing up, one of my parents neighbors started a children's choir, still going today. My siblings and I all sang in the choir at one time or another.  It's a prominent audition choir, winning awards, touring, recording CDs, etc. Last November my sister ran into the director at the music store. (He's been a family friend for many years). He's a bachelor so she invited him to our house for Thanskgiving and it was a great time.

It wasn't until much later that I realized what a blessing that choir was to me from age 8-16. It wasn't perfect; there were 2 choirs and it took me several years to qualify be in the more advanced choir and that's OK. The important thing was it gave me something to be GOOD at when so many other things were so hard for me. It gave me tremendous opportunities that I wouldn't have had otherwise and at the risk of being dramatic, I don't know where I would have been then or now, without it. I was fortunate that the director is still around so I could tell him about it.

For those with special needs, an opportunity is HUGE. Apparent or not, they are aware of what's going on, they have needs, wants, desires to be accepted, to feel successful, feel good about themselves. If you are in the position to provide an opportunity, do it. If you have been the recipient of an opportunity, special needs or not, thank someone. Every bit of good counts!!!!