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Getting Things Done After a Brain Injury

by Linda W. Arms, Feb. 8, 2019

I originally wrote this in Feb. 2013, six years ago. At that time, I was living with a brain injury for 7 years and still struggled with many, many things. I’m posting this again because it points out to me how much I’ve improved in the last years. Many of us are grieving, sad and frustrated after our brain injury because of everything that has changed in our lives. I was one of those people. Now several years later, improvement continues, and well past the time that most doctors told us improvement would end. Don’t give up hope that you will get better. It takes time but it does happen for many of us. I still use my planner and schedule my tasks based on my brain energy levels. I don’t get so easily overwhelmed but I definitely work within certain boundaries I’ve set for myself. I eliminate distractions, say “no”, and do my more complex thinking and tasks in an environment that I am able to control, and at the beginning of the day when I have the most brain energy.

Original post dated Feb. 2013:

I do things in a more linear way these days. I can successfully manage one thing at a time. It is because I have a brain injury that I can no longer multi-task in the ways I did before my injury. Since my injury, my capabilities have improved tremendously but I am still far from where I used to be where I juggled multiple information technology projects; managed a group of 16 or more that was responsible for several aspects of technology in a large organization; taught classes after work; and managed all of life’s other aspects at the same time. I could easily jump from one topic to another and then back again. Those days are gone.

These days I can recognize several things that need to be taken care of, like a birthday coming up, having someone over for dinner, taking care of a personal business matter and a lot of other small matters. The problem is that I can’t work with a multiple of these things at the same time without difficulty and feeling overwhelmed.

What do I do? I look at my list of “to-do’s” and decide which needs my attention first. It might be just a small piece like “I have to order this book so it is here for my husband’s birthday”. I take care of ordering it and “put away” the other birthday tasks for a later date and not even think about it. Then I focus on accomplishing just that one other thing that I’ve identified as being the priority. In this way, I don’t have that feeling of overwhelm so I can give all my brain energy to one topic. I am more successful when I focus on one thing until I complete it because I don’t have to re-think things. In my opinion, re-thinking takes up a lot of cognitive energy that I don’t want to waste.

I also do not place a lot on my “to-do” list because I know I can’t be successful. I identify what is most important. There are things I just don’t do – they are no longer important in my life. I ask others for help. I remove distractions from around me so I can focus on what it is I am doing. I take “brain time-outs” sometimes for a whole day if I overdid it for a few days. Once you use up a lot of your cognitive energy, it is almost impossible to recover if you keep going and doing whatever used it up. You have to rest, many time for days.

My daily planner is essential and keeps track of things for my brain. I need total silence when I need to accomplish something requiring more thinking. Sometimes I have to write down the steps of what I will need to do to help keep me on track. It also helps me to avoid having to rethink something and use valuable brain energy. I take lots of brain breaks and take naps. I avoid social events when I know I have to do some heavy duty thinking tasks the next day. What tips do you have to share?

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Holiday Challenges With a Brain Injury

by Linda W. Arms, November 5, 2013

We are now in the middle of the holiday season which can challenge those of us with an injured brain. It is a time when so much more is expected of us than most other times of the year. We along with our loved ones, friends and caregivers should all remember that it’s best to simplify so we can enjoy things more. It’s been nearly 9 years since my brain injury and I’m doing much better but I have to remind myself to keep things simple instead of doing all the things I “should” do, or the things I did before my injury.

This season brings so many more demands on our brain. We have to do a lot of extra things such as buying gifts, putting up decorations, doing more cooking and interacting with more people at social events. We have to maneuver around very busy stores, and the entire holiday hubbub on the roads and parking lots. The holidays can also be an emotional time because we might think back to our past selves when we could do so much more. We might feel our loss even more and feel that familiar grief.

Brain injury survivors and caregivers should take extra care during this time for rest, finding quiet spaces and doing less of what is expected during the holidays. Those of us with a brain injury probably are much more settled and can enjoy this time better if we don’t have ALL those decorations, especially flashing or moving lights all around us. They are overwhelming for our poor brains to process and contribute to sensory overload. Plus its a lot of work to put up so many decorations and take them back down. I put up just a few decorations and I can feel a strange anxiety of having those extra things to look at as I process my surroundings.

You also need to learn to say no to some things. I’ve turned down large family get-togethers in these past years because of all the challenges of interacting, a lot of noise and making your way through the groups of people. And then, of course, we have to remember that when we over-do-it one day we have to pay for it the next.

Ask for help. Instead of doing most of the cooking for a special meal, make it pot luck. Everyone contributes a dish or two. Instead of running to a lot of stores for gifts, buy online. Reduce the amount of gift giving. Many people are happy to opt out of gift exchanges or to cut back from earlier years.

Simplify the decorations, the gift giving, the meals and everything else that is part of the holiday season. Find ways to enjoy the holidays with quieter moments. Keep it simple and you’ll enjoy it more. And remember More is Not Better

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12 Tips for Getting through the Holidays with an Injured Brain

by Linda W. Arms

As the holiday season gears up, we need to remember to take care of our injured brains so we can enjoy the season more. We need to prepare ourselves to make it through the holidays without too much more fatigue or stress. We need to be ready for that party, dinner, driving to an unfamiliar place, or something else we may not often do. Here are some tips that work for me since my brain injury:

Pace yourself – don’t commit to more than you can successfully handle. Don’t overdo the shopping, the cleaning, and the cooking or other activities. Give yourself a quiet day before going to that party or dinner. Take a nap or just lay down and rest. Do everything in moderation.
Get organized in advance. Write things down to help you remember what you need to do. Why burden your brain by trying to keep it all in your head?
Prioritize – only do what is important. There are probably things to do that you can put aside until after the holidays.
Ask for help – with the shopping, the cooking, the cleaning or whatever else it is.
Keep things simple – simplify the decorations, the gift giving, the meals and everything else that is part of the holiday season. Find ways to enjoy the holidays with quieter moments.
Eat properly throughout the day to nourish your brain so it can do a better job for you. Drink recommended amounts of water.
Determine how to get where you have to go before you leave. I like doing this the day before so I can study the Google map and try to think about it for a while before I get on the street. I even do a “street view” in Google Maps so I can be familiar with the area I’m travelling to. My TBI resulted in me losing the map of where I’ve lived for the last 30 years and not having a good sense of direction anymore.
Determine how much time you need to get there. Give yourself some extra time since stressing causes an additional load on our brain which we want to avoid. Write down what time you have to leave, what time you need to start getting ready. I have trouble with time and remembering the numbers. I write it down so I don’t have to re-think this 10 times before I go.
Determine what you need to take with you and what you are going to wear. Doing this well ahead of time saves that last-minute pressure that makes it difficult to function if you have a brain injury.
Determine, in advance, your way out of the social situation or other activity if things are not going well for you. You may need to find a ride home. You may need to leave early before the dinner is over. You may need to cancel before you even leave the house. It’s good to let others know that you may have a problem and that you just have to escape before you can’t function well enough to get yourself back home safely.
If you’re going to a new place for dinner, study the menu on the Internet before you go. I found it very hard to focus on a new menu and figure out what to eat when I just couldn’t keep up with the busy restaurant environment and people at the table talking to me. It’s easier to decide in advance if possible.
Try to get a table in a quiet, less busy part of the restaurant. I often get a table away from the hub-bub and I sit facing the wall so I don’t have to see the movement in the restaurant. I sometimes asked the waiter to turn down the music.

The idea is to save brain energy so you can have a good time. Enjoy!

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Friendships and Relationships After Brain Injury

by Linda W. Arms

After a brain injury our relationships with others change. Very often in the first years we are too overwhelmed with daily living to give much thought to anyone else. We devote our brain energy to getting ourselves through the day. The little energy we have to interact with others is usually reserved for those very close to us, like our immediate families and perhaps very close friends. As a good friend of mine told me after her brain injury, she put people away in drawers to get back to in the future when things were better for her. I know I did this myself. Some people are still in drawers or, without sounding rude, they have been discarded.

After my brain injury, other than my husband taking me to my office to gather my personal things, I didn’t reach out to anyone I had worked with, even those I knew for over 15 years. I didn’t reach out to most of my extended family, friends or acquaintances. I declined most invitations to anything. I felt best, safe and most functional at home in my cocoon of quietness.

I put most everyone I knew away for many reasons. Most of all I did not have the energy to interact with others. Everything was overwhelming. Just doing a little to get myself ready such as showering, drying my hair, and choosing my clothes were often more than I could deal with. My body was weak and my brain was not working well. Having to ride in a car was awful. Trying to understand a conversation was challenging – people talking too fast, too complex, too loud, using facial expressions, gesturing with their hands, walking about as they talk, noise in the background…. It was hard, hard work for a long time. Our brains have to process everything that is going on during that interaction and many of us just can’t do it until our brains have healed more. When we try to take part, we quickly fade and lose more of our ability to comprehend and speak. We become very fatigued and overloaded. As someone once told me, your brain is then like a glass that you are pouring water into. Someone keeps pouring in the water until it overflows. That is what happens when we receive too much mental stimulation or input after a brain injury. We just can’t hold everything that is coming into our brain to process.

My immediate family received most of the brain energy I had to spare in those early years. I wanted to participate in their lives. I wanted to take part in what they wanted to do as best I could even when it was not what I really wanted to do. It was just too difficult. My parents saw much less of me during the early years because I just didn’t have enough brain energy to spare. Slowly I spent more time with them, helping them the best I could given my own limitations.

Next I started taking people out of those drawers that I stashed them in. I started seeing or talking to people who I had relationships with that didn’t include me as a professional who had many business skills and knowledge. I couldn’t find those skills and knowledge in the early years, they went into hiding in my brain. I wasn’t the same person. I wanted to be with people who knew me outside of my profession. I started with just a couple people who could relate with what I was going through, had compassion or understood enough about how to interact with me. There were a few people taken out of the drawers for my family’s sake but often those people were challenging to be around – they were a brain energy drain.

Slowly in the last years, I have taken more people out of those drawers and I can say I enjoy my time with them. There are some who still are overwhelming for me and cause me to be exhausted for a day after being around them but I really like them. There are some who I decided I would no longer include in my life because they just weren’t worth the energy I was spending on them. They didn’t have nice things to say or our lives just took different directions.

I find I am much more selective in who I spend my time with. I prefer being around people who are nice, have compassion and have values I can support. After a brain injury, many of us cannot afford to use up our energy for toxic relationships or uncaring people. We have to reserve our energy for those most important in our lives with ourselves being the first in line. I’m still working on getting more people out of the drawers who I’ll reach out to when the time is right. I’m working on expanding my world and the people I interact with. I expect many of you are doing the same thing also. We just need to remember that we have to leave enough brain energy for ourselves to stay healthy and functional.

Added 10/5/18:

It’s been a few years since I originally wrote this and I have improved even more. Friendships and relationships are still different in that I am choosy with who I spend time with since I still have some limitations and issues. Some people just use up a lot of energy, and some activities or environments use up a lot a energy. So now I find that for some people I spend time with, I choose our activities carefully so there isn’t a double-whammy on my energy reserves. I also avoid scheduling my time where I have 2 energy draining events on consecutive days. I want to enjoy myself but I don’t want total exhaustion at the end of the day that carries into the next day. I’ve met some great new friends in the last couple years and enjoy their company so I continue to make progress in re-connecting and enjoying my time with other people.

“I don’t know what it is but I don’t find myself vibing with a lot of people these days. I realized that I’ve slowly and subconsciously filtered people out of my life who bring nothing to it.

I no longer have the energy for meaningless friendships, forced interactions or unnecessary conversations. If we don’t vibrate on the same frequency there’s just no reason for us to waste our time…” — Joquesse Eugenia

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Updated October 6, 2018

Published January 29, 2014

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The Year I Ran Away from Christmas

by Linda W. Arms, dated December 17, 2013

Sometimes it might be good to get back to the very basics and have a very simple holiday season, especially after a brain injury. So many of us are challenged by all the events around the holidays, doing what everyone’s expected of us in years past. Many of us have to endure the big family get-togethers, or busy holiday environments. It is challenging because our brains are overwhelmed.

Seven years ago, in 2006, I could not face Christmas at home as I did in my past. In January of that year I had the accident that caused my TBI. By December of that year, I had not made much progress in my recovery. I could not face the Christmas decorations and products that I saw in stores already in October. I would get tears in my eyes. The difficulties I had just in being in a store became even worse because of the emotions that my brain was having to deal with. I was OVERWHELMED by the thought of putting up a tree, buying presents and doing any of the things I normally did in the past, including always having a big holiday get together at my home. I just couldn’t face it. It just was not possible to be who I was before. So I, my husband and daughter, ran away.

We went to a place I used to live growing up and that I have many fond memories of. We went to Germany where Christmas is still celebrated in a much quieter style. We stayed in a small village. We bought a tiny tree about 12 inches tall with a few decorations already on it. We enjoyed some very low-key events in this village that did not allow cars on many of its streets. I could face Christmas here. I did not have to try to be the person of my adult past. I took many naps. I could not count the money to pay for things. I could not sort out many things I used to know about being there. I leaned on my family. Even with all these things in my way, it is still a wonderful memory that I have of this special time when we ran away from Christmas.

Here is a picture of our Christmas decorations, a tiny tree, 2 tiny reindeer, 2 candles and not much else. We just enjoyed the peace and tranquility of where we were. We enjoyed just our little immediate family being together.

Today, seven years later, Christmas is still much, much simpler compared to “before the accident” but I don’t feel I have to run away. I am still getting better in small doses. I hope all of you are finding yourself better than last year. Have a Merry Christmas! Happy Holidays!

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Preparing for the Holidays

by Linda W. Arms

Pace yourself – don’t commit to more than you can successfully handle. Don’t overdo the shopping, the cleaning, and the cooking or other activities. Give yourself a quiet day before going to that party or dinner. Take a nap or just lay down and rest. Do everything in moderation.
Get organized in advance. Write things down to help you remember what you need to do. Why burden your brain by trying to keep it all in your head?
Prioritize – only do what is important. There are probably things to do that you can put aside until after the holidays.
Ask for help – with the shopping, the cooking, the cleaning or whatever else it is.
Keep things simple – simplify the decorations, the gift giving, the meals and everything else that is part of the holiday season. Find ways to enjoy the holidays with quieter moments.
Eat properly throughout the day to nourish your brain so it can do a better job for you. Drink recommended amounts of water.
Determine how to get where you have to go before you leave. I like doing this the day before so I can study the Google map and try to think about it for a while before I get on the street. I even do a “street view” in Google Maps so I can be familiar with the area I’m travelling to. My TBI resulted in me losing the map of where I’ve lived for the last 30 years and not having a good sense of direction anymore.
Determine how much time you need to get there. Give yourself some extra time since stressing causes an additional load on our brain which we want to avoid. Write down what time you have to leave, what time you need to start getting ready. I have trouble with time and remembering the numbers. I write it down so I don’t have to re-think this 10 times before I go.
Determine what you need to take with you and what you are going to wear. Doing this well ahead of time saves that last-minute pressure that makes it difficult to function if you have a brain injury.
Determine, in advance, your way out of the social situation or other activity if things are not going well for you. You may need to find a ride home. You may need to leave early before the dinner is over. You may need to cancel before you even leave the house. It’s good to let others know that you may have a problem and that you just have to escape before you can’t function well enough to get yourself back home safely.
If you’re going to a new place for dinner, study the menu on the Internet before you go. I found it very hard to focus on a new menu and figure out what to eat when I just couldn’t keep up with the busy restaurant environment and people at the table talking to me. It’s easier to decide in advance if possible.
Try to get a table in a quiet, less busy part of the restaurant. I often get a table away from the hub-bub and I sit facing the wall so I don’t have to see the movement in the restaurant. I sometimes asked the waiter to turn down the music.

The idea is to save brain energy so you can have a good time. Enjoy!

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Abandoned????

by Linda W. Arms, DATED 11/15/2013

Were you very dependent on others after your brain injury? Did you need assistance, support and care from others just to get through each day? For some of us, it was an extreme dependency because we were flat on our backs. For others, like me, we moved about but everything was difficult. We needed someone to cook for us, to clean, to drive us to appointments, to keep us stimulated when we rather just hide in a hole. We needed someone to help us make decisions, to resolve problems, to take care of personal business, to read something and interpret the meaning for us….so much dependency on others to live our lives. Life on our own was almost unthinkable.

As we improve, we begin taking on more of life’s tasks. Sometimes we don’t do them so well and need to be rescued. Often our caregivers watched over us as we tried to do things and stepped in to help. Sometimes we just couldn’t continue with the task because it turned out to be too taxing. How many of you started a meal, or another task, and just had to stop in the middle of it because it became too overwhelming. Who helped us out when we failed? Our caregivers.

Our caregivers are loved ones, friends, volunteers, professional service providers and others. They are desperately needed during our many difficult days with our injured brain. As we get better we depend on them less. They begin withdrawing from their role. They go back to work. Back to their own lives. Move on to others who need their help. It is all to be expected but still in some way, at some point, we may feel abandoned.

After my brain injury, my husband and daughter stepped in and took over my life for me. Things were taken care of around me. They told me when to eat, they cooked, and they did the grocery shopping. They handled conversations with people when it was too overwhelming for me. They did the thinking for me. I was always so, so tired. I slept 14 or more hours every day.

As time went on, months, even years, I slowly started doing more. They went back to the lives they were living – to work, to school, to socialize with other people. At some point in my recovery, probably around year 3 or 4, I started thinking, “hmmm…. well what about me? Here they are being very normal people and they have a life outside the home. Mine was gone. The life, as I knew it before my injury, was in shambles. Most of the time I didn’t care because I didn’t have the energy for much, and most activities outside the home were overwhelming. But still, there were times I felt left out. As time went on and I continue to improve, I think even more “what about me?”

Like many of you, after a brain injury, we have to start rebuilding our lives. That is where I am at these days. I’ve been working on it actively now for about a year. I’m sure there are many of you in the same position as I am. Perhaps we all have felt a bit like we’ve been abandoned by the people who took care of us. But it is normal and to be expected that they move on with their lives and it is what we, with the injured brain, must also do.

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Holidays Challenge Our Brains

by Linda W. Arms

Today I noticed Christmas decorations being set up in a local shopping center, giving my injured brain moments of anxiety. The holiday season is coming up fast. It is a time when so much more is expected of us than most other times of the year. Those of us with an injured brain, our loved ones, friends and caregivers should all remember that it’s best to simplify so we can enjoy things more. Its been nearly 8 years since my brain injury and I’m doing better. After seeing the decorations I thought to myself about all the things I “should” do but quickly reminded myself that I need to keep it simple.

Everyday can be challenging for someone with a brain injury but the holidays bring even more challenges. We have to do a lot of extra things such as buying gifts, putting up decorations, doing more cooking and interacting with more people at social events. We have to maneuver around very busy stores, and the entire holiday hubbub on the roads and parking lots. The holidays can also be an emotional time because we might think back to our past selves when we could do so much more. We might feel our loss even more and feel that familiar grief.

Ask for help. Instead of doing most of the cooking for a special meal, make it pot luck. Everyone contributes a dish or two. Instead of running to a lot of stores for gifts, buy online in addition to reducing the amount of gift giving. Many people are happy to opt out of gift exchanges or to cut back from earlier years.

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More Is Not Better

by Linda W. Arms, dated Sept. 15, 2013

After a brain injury, more of many things, is not better. It is not better to see more things around you; it is not better to be given more choices; it is not better to have more things to do; and it is not better if someone tries to explain something to you in multiple ways so you can get what it is they are trying to tell you. After my brain injury I definitely want less of most things. I can do so much these days but I have definitely lost my edge. Some of you have lost even more, so I expect you don’t enjoy more of everything either.

For most aspects of our lives, it is better to simplify and remove the multiples of things we don’t need. This could mean simplifying things around the house by removing the clutter. Remove things that you rarely use from your closets, cabinets, shelves and drawers. Having to look at so many things requires your brain to work harder. Make it easier on yourself by relocating things you rarely use.

Having too many choices is overwhelming. If somebody told me you can do A, or B, or C, or maybe D; it just made my head spin. I couldn’t and didn’t want to think about each possibility and make a decision as to which option I preferred. It felt like torture.

Having many commitments of your time and energy is also too much for many of us with a brain injury. Just knowing that I have many things on my “to-do” list is often overwhelming for me and causes the brain fog to set in. I can only focus on a few things at a time. I have a big to-do list but I pick just a few items to put on a daily/weekly list. I don’t look at the big list on a daily basis. It’s more like once every week or two.

Words – too many words – can be so fatiguing. Sometimes people feel they need to keep talking to us to explain things over and over and in different ways so we understand. For me, I just want simplicity and a slower speed when people speak to me. I sometimes feel I’m drowning in the words that are coming at me, causing fatigue and frustration. I have had various people speaking to me who were much too talkative and they are close to me so they know my problem. They speak way too fast, using too many words making it so uncomfortable for me that I now refer to it as “brain rape”.

Of course, there are things I want more of, like chocolate, but overall I want to enjoy life at a slower pace, with less noise; less clutter; less electrically produced light; less fast, complex talking; less crowds; less movement around me; less choices and so on. I expect that as time goes on, I’ll be able to handle more of things. During the last 7 ½ years, I’ve slowly increased my abilities to handle more. It just keeps getting better.

Source: http://notoriousbig-river.tumblr.com/post/43170184610

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Don’t Talk About “Killing Time”

by Linda W. Arms

Since my brain injury I have become rather sensitive to healthy people complaining about being bored, not knowing what to do and are just “killing time”. There are so many of us who have had an illness or injury where our options of doing anything are severely limited. We struggle to get better. We struggle to do the things we did before. We struggle to do things like other people. We are happy when we can do a simple thing without too many problems, even stirring a bowl of instant mashed potatoes! There are people living with SEVERE handicaps and illnesses who appreciate the moments they are given and find joy in little things. Killing time cannot be in your vocabulary whether you are healthy or struggling with an illness or injury.

I am fortunate in that my brain injury was not as devastating as those of some other people I have met. It has also been over 7 years since my accident during which I worked hard to get better. I tried doing things I did before and continued to do many of them even though it was very difficult. I keep looking for new goals to increase my level of improvement. I want to live life. I want colorful, rich experiences. In my journey back from the despairing first years after my injury, I feel I have reached the mainland of living where I can participate more fully. I don’t want to kill time and I absolutely hate it when I hear other people who say that. How sad! Just think of the poor victims of the recent bombing in Boston or the shooting at the Aurora movie theater. They lost their lives. Their time is “killed”. I’m sure they would like to have had the opportunity to trade places with some of the living that are “just killing time”.

A couple of summers ago I participated in a week-long camp for people with brain injuries. I was a volunteer acting as a buddy to a camper who had a much worse brain injury than I did. My buddy was injured decades ago at around the age of 19. He was in a serious car accident that occurred because something in the car malfunctioned. He was in a coma for several months. Today he lives with a caretaker but he participates in life by going to camps and has other activities to stimulate him. He has terrible memory problems and many other cognitive problems. BUT HE LIVES LIFE with a smile. He is not bored. He does everything he can do with the cognitive capacity that he has.

Another camper I met who was truly an inspiration was another young man who received his brain injury when he was a toddler. He was in a coma for 2 years. Thirty-some years later, he is in a wheel chair, he cannot speak, his motor skills are very, very poor. He has to be fed or food cut up for him. He is always dependent on someone for everything. When I first heard about him coming to the camp and then actually met him, I thought, oh my God! How do you interact with someone who is so severely handicapped. I felt so bad for him. But you know what; he had so much joy in his beautiful eyes and in his face when he participated in all the camp activities. He and I connected in the last couple days of the camp and I thought he was truly an inspiration to living a full life given whatever limitation life has given you.

So my point is – no matter where you are at with your brain injury – keep going. Live life, enjoy life, try new things and don’t just sit around “killing time”. Be happy you’re alive. Be happy you have options in living a fulfilling life and finding joy even if you have limitations.

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Frightened by My Own Shadow – A Reminder from My Injured Brain

by Linda W. Arms

One evening recently I was walking through my house and was frightened by my own shadow. It was a big reminder of my earlier years after my brain injury when I was often frightened by things. Often I think I could not process things quickly enough to understand what it was I was seeing. Part of it also was that I was often hyper-vigilant as a result of PTSD (post-traumatic stress syndrome). Whatever the cause, these responses of fear are a bit unnerving and zap some energy from my brain. It even affects my physical energy for a few moments; there is a wave of physical weakness.

In the last weeks I’ve had many things on my mind and I am less aware of my surroundings. A few days ago, I walked around the back of my house and saw the reflection from the water in a tiny pond that’s been there for the last 20 years. When I first saw the reflection I was frightened because I didn’t know what it was. It didn’t fit in with the rest of what I saw like grass, trees, and plants. I don’t think it was a PTSD thing this time. I think my brain could not process the visual input fast enough to tell me “it’s OK, it’s just light reflecting on the water”.

How many of you have had these experiences after your brain injury? I remember some of my rather strange reactions that now I can even laugh about. A couple of years after my accident, I moved my car out of the garage and parked it in the driveway. I wanted to sweep the garage. After sweeping for a few minutes, I looked up and saw a car in the driveway. It frightened me because I thought “who is parking there, what do they want?” A few moments later I realized it was my car that I had moved out there less than 10 minutes ago.

Another time I was walking through a home goods store and I suddenly saw something that really scared me and I even made some sound. Again, a few moments later, I recognized that it was steam coming from a room humidifier that was on display. It sounds crazy and I felt embarrassed by my reaction since there were other people around. The incident caused me to have more difficulties getting through the store. The scare zapped that fragile brain energy.

I’m not sure what causes these responses; only the brain fairy knows for sure. I think in the earlier years, PTSD played a role in my moments of being frightened by something. Today I think it’s mostly that my brain still can’t attend to too many things at once. If my brain is busy thinking about a problem then it can’t also be processing a lot of visual input or other things it should be doing. I have to say I’m rather disappointed that I have had this response so frequently in the last weeks but I realize it will get better. It makes me realize I have to be extra careful doing things that require a lot of attention. I have to remind myself to stop thinking about the problems, put them aside, and focus on what I have to do at the moment.

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K.I.S.S. – Part III of “Keep It Simple Sweetie”

by Linda W. Arms

For many of us with an injured brain, communicating requires some extra care and attention. We want to easily understand what is said to us without it requiring a lot more brain energy and frustration. When we were like everyone else, comprehending what is said was so much easier and we often didn’t give it a second thought.

As my previous two posts on this topic mentioned, there is SO MUCH happening that you don’t think about. The brain that is receiving the words/sentences is very busy as it processes all the pieces that make up the spoken communication. At the same time, there are many things happening around us that our just part of the environment we happen to be in such as a restaurant or in an office.

Many things add to the complexity of the communication which results in more work for the injured brain to sort through and get to what is actually being communicated. Here are a few more things that get in our way to easily comprehend what is being said to us:

Distractions – there are always other things happening that distract us from comprehending the words coming at us. Things like TV’s or radios in the background, and other people having conversations requires those of us with an injured brain to work extra hard in filtering out those other things. It is also extra work to understand someone who is busy doing something else while they are speaking to us. Our brain is trying to focus on the words coming at us but at the same time we have to filter out the other activities the person is involved in. I’ve had a hard time focusing on a person’s words when they use a lot of hand motions as they speak. Even excessive facial expressions will interfere in my abilities to focus on what is said.
Sarcasm, innuendo, and those other added complexities of communication – these are those things that require the listener to “read between the lines” of what is said. We have to analyze the implications of what is said not just understand the words. If we have an injured brain, we often just don’t get it. We tend to take things very literally. I’ve often felt left out when others laughed or reacted a certain way to something that was said because I couldn’t understand the innuendo or other twist on words.
Words that sound like other words – an injured brain does not go down too many different paths in figuring out which word was really intended. When my brain was far less nimble, someone said something to me about “lox on the window”. Actually what they said was “locks on the window”. For some reason, I initially comprehended lox (the fish) – on the window. You can imagine my confusion which resulted in me losing the rest of what was said until I could figure out that they really didn’t mean having fish on the window.

Although comprehending what others are saying to us is more challenging for many of us after a brain injury, we have to remember that those “normal” people are just speaking like they always did and like we always did. They can help by paying more attention to how they are speaking to us and what is going on around you. We, with the injured brain, need to keep challenging ourselves to help improve our ability to comprehend. We can’t isolate ourselves. We can’t expect our loved ones, friends or caregivers to turn into robotic style speakers. It does get easier. Now after 7 years I actually understand things much more easily and I actually get most of the sarcasm, innuendo and other things. Now I can look back and actually laugh at how I reacted (or didn’t react) to things that were said to me.

See my earlier posts with tips on communicating with those of us with a brain injury:

Part I of K.I.S.S. – “Keep It Simple Sweetie”

Part II of K.I.S.S. – “Keep It Simple Sweetie”

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The Brain Fairy is Always Lurking

by Linda W. Arms

After a brain injury, every day brings constant reminders that our brain is not working well. For many of us, everything becomes a challenge. Every movement we make, speaking, seeing, reading, counting, driving, cooking, cleaning, walking, hearing, thinking and so much more becomes difficult. Nothing feels normal. With these challenges, we become even more fatigued and less able to do the things we are trying to do. It becomes a vicious cycle that we cannot move out of. Slowly as we get better, we start experiencing a “new normal”.

I think our “new normal” is a combination of us forgetting how it used to be, and that we have actually gotten better. We also adapt by changing things around us and how we do things. We stop doing certain things because it just isn’t possible or isn’t that important for us to spend the energy on. We become much more functional and after a while we don’t think about our brain injury every single day. Sometimes it takes years to get to this point.

Many of us don’t want our brain injury to define us so it is important not to constantly think of ourselves as “damaged” or that we can’t do something. Sometimes we have to redefine who we are and what our life is to be. Maybe we can’t do that job we had before. Maybe we can’t climb mountains. But there are other new and different things we can do.

Living with our “new normal” is fine and works most of the time. Sometimes, however, the brain fairy comes back for a visit. The brain fairy that causes all that trouble but also heals things in our heads is always lurking in the background. Sometimes that visit brings back many symptoms we thought we’ve overcome. A frightening experience like two large dogs barking, running and jumping at you causes you to have that sense of visual discombobulation or you feel unbalanced; your mind goes blank and the fog returns or something else just isn’t feeling normal again.

Sometimes, the brain fairy returns for a longer visit such as when you are faced with big life disturbances such as family problems, money problems, illness or other things that weigh heavily on you. The stress, the emotions, and the mental work required to deal with these things is more than your injured brain can deal with. Symptoms return, fatigue sets in, everything becomes much more difficult. It is a time to step back and take care of yourself. It is time to ask for help. Remember the early months or years after your brain injury when you did nothing much other than try to heal. You rested more, people helped you more, you did less, you put less things on your “to do” list, you didn’t do some things you used to do.

For whatever reason the brain fairy returns to you, remember it will pass. Sometimes it is a short visit. Sometimes you don’t know when it will end. But remember that eventually it will get better again. Pace yourself. Be patient and good to yourself in the meantime.

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Taking Back Control After a Brain Injury

by Linda W. Arms – March 2013

A brain injury often results in us losing control of our lives. Often, because we need the help and oversight, we have to depend on others. We need help with simple, daily living activities such as getting to an appointment because we can’t drive. We need help with simple decision-making. We need help understanding what we are reading or hearing. We need the help of someone else’s brain for so much!

Our loved ones or caretakers start taking over our lives through no fault of their own. We have to lean on them for so much. They make many or all of our decisions, sometimes even for very simple matters. They answer someone’s question for us. They tell us we have to eat or have to rest or stop doing whatever it is we’re doing because they see it’s too much for us or it’s not safe to continue. We want them to do these things for us because it’s too much work or impossible to do by ourselves.

After my brain injury I felt like I instantly turned into an 85-year-old woman and a young child at the same time. I could not move fast and was unsteady. I had little strength. I needed someone to hold my hand to walk across the street, to tell me to stop what I was doing, to take a nap… I wanted someone to comprehend what was being said to me and help me respond.

As I improved, I slowly took over many things people were doing for me. I was not always successful, so I needed their help again. My capabilities were also inconsistent depending on my level of fatigue. My helpers were often standing by, watching and ready to step in. They let me try on my own. It was like being a young child who is learning new things in life. I was VERY grateful for all the help!!! Often I thought, “please, make this decision for me, it’s just too hard for me”.

In recent years, however, as I improved, I needed less and less help. It is sometimes a little difficult taking back that control over your life. Those you counted on became too used to taking over for you when you could not do something. As you improve it is often a bit challenging and even confrontational when you start taking charge of your life again. After all, you’re a big girl (or boy) now and you can do it by yourself.

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Cooking is a Cognitive Challenge

by Linda W. Arms

Many of us used to think that cooking was a fairly simple task. I thought so before my brain injury. Even though I was very busy with a demanding job and other things in my life, I enjoyed cooking. I was never one to follow recipes. I preferred getting ideas from meals I ate in restaurants and looking in food magazines. I liked to create my own things and made many complex dishes for my family and guests.

I don’t really care to cook that much anymore. It was one the things I immediately stopped doing after my brain injury because I didn’t have the physical or cognitive energy. My family took care of cooking for me, including the shopping and the cleaning up. I just couldn’t do it. I was very weak at the beginning. My motor skills were off. Stirring and other rotating hand motions made me nauseous and dizzy. My vision had a number of problems that weren’t yet fully diagnosed. The tasks involved in trying to cook a small meal were too overwhelming for my brain to process easily.

I just didn’t cook. It was just too hard and it made me feel worse. I tried many times to at least help by doing a few tasks but often that was too much for me. We just don’t realize how much is happening when we cook something. You have to decide what ingredients and dishes you need. You need to wash and cut things up. You need to figure out the order and timing of things. You need to use motor and visual skills as you use utensils and do other cooking tasks. You need to use memory. You need to process things and sounds that are around you in the kitchen; you need to tune those things out and focus on what you’re doing. I’m sure that’s just a small part of it. But you get the idea. Lots of stuff happening for our injured brain to process.

Over the last years I slowly expanded my cooking activities. I would do easy things at first. Someone in my family would help by cutting things up for me. Someone was also always standing by to save me. They also were quiet while I cooked. They knew that any talking; or having the TV or radio on would cause too many problems for me. I had to have silence and no distractions while I cooked. S..l..o..w..l..y over the last seven years, I am doing more cooking and even talk at the same time! It sounds silly but that’s how it is. I expect some of you can relate.

I don’t really enjoy cooking that much anymore. I still have to approach it differently than I did before. It’s a lot more work. I usually always burn one part of the meal. It’s kind of a joke these days. I’d like to also thank my husband for stepping in and cooking many of our dinners these days. He’s become a wonderful cook!

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Getting Things Done with a Brain Injury

by Linda W. Arms

This blog is something on my “to-do” list these days but honestly it is low priority. I enjoy it and really love hearing from many of you but sometimes I have to put it aside like I have for the last week because I have to tend to other things that have become a priority. I do realize, however, that I can do more as each year goes by. My daily planner is essential and keeps track of things for my brain. What tips do you have for those of us who have problems multi-tasking or getting easily overwhelmed by just a short list of things to do?

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Why is Eating So Much Work?

by Linda W. Arms, Feb. 7, 2013

After a brain injury, everything seems to take so much energy out of you. One of our most basic needs, nourishing ourselves, can be a lot of work. Obviously cooking involves a lot of cognitive activities but even eating can be challenging. After my TBI, it was difficult to sit at a table and eat. I would often eat part of my meal and be so exhausted that I would have to lie down.

Think about everything that is going on at the table while you’re eating, especially if others are with you. Another person is moving their hands to pick up the fork, cutting with a knife, moving food to their mouth, reaching for a dish of food… They are picking up glasses to drink. They talk. Maybe a radio or TV is on in the background. There are plates, glasses, napkins, and other things on the table and all around you. All of this is being processing by your injured brain. On top of all this, you have to feed yourself. All those little actions that have to be handled by your brain. Can you see why it’s exhausting?

I had visual problems after my brain injury that took a few years to be resolved. It was very uncomfortable for me to sit at the table and eat. I wasn’t particularly hungry and then adding the stimulation of being at the table was too much for me. Even my own hand movements of eating and cutting the food were too much visual stimulation. I would sometimes feel nauseous from the hand movements. For some reason, clear glassware on the table caused a problem for me also. I think my brain couldn’t quite figure it out, looking through it or whatever but the more there was on the table the more difficult it was for me to look at it.

I also had a sensitivity to sound and light. Think of the sounds at the table that your brain has to process. Bright lights around you add to the level of stimulation. I used custom fitted musician earplugs to muffle the sounds around me but, unfortunately, having them in my ears while eating did not work very well. The sound of me chewing was very loud which was disturbing. The chewing sounds would also drown out anything someone was saying to me. I knew I had to eat but the experience was not comfortable or enjoyable. I’d eat a bit and then take a rest. This is a lot for an injured brain to deal with just being at home where your surroundings are familiar, imagine the additional burden when you are out at a restaurant! Just remember it gets better as your brain heals. Know your limitations, and try to control your environment to keep things that trigger your symptoms from taking over.

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The Brain Fairy At Work

by Linda W. Arms

After a brain injury there are many strange sensations in our head and body. For me, the sensations began a few hours after my injury and have slowly decreased in intensity and frequency over the last years. Sometimes, lying awake at night, I would notice these and be afraid because I felt that no one really knew what was going on up there in my brain. Science still refers to the brain as the “last frontier”. I felt I was in a strange, mystifying state where that “brain fairy” was doing its work that others did not understand.

I expect everyone with a brain injury has different sensations. I’ve noticed from reading others’ experiences there seem to be some similarities. How many of you felt the same things I did?

Flip-flops or butterflies in my head – it actually felt like there was a movement up there, sort of like waves, very strange. It was not pleasant. Sometimes very intense. I couldn’t do much of anything when this was going on. The first hours after I got up in the morning were especially bad. Sometimes I would just sit in a comfortable chair with my head back and let the “brain fairy” do her dance. I could not stop it. Nothing would stop it.
Bursts of light – during the many hours each day where I would be sleeping – before falling asleep or waking, there would be little bursts of light when my eyes were closed. I’m not really sure if I saw these with my eyes or if it was just a sensation in my brain. Again, very strange, very mysterious. Almost like shooting stars.
Pains in my head – obviously my head hurt from the physical trauma but there were odd shots of pain in different places in my head. Very quick.
Tingling, prickling and numbness – this was a rather obnoxious sensation I had in different parts of my body. I would feel it in my face, my head, my hands and feet.
Slideshow at super speed – this is strange, I know. As I woke, with my eyes still closed, I would see a bunch of unrelated pictures that would speed through my head. It was like someone was running a slideshow in my brain but very fast. I could not really focus on the picture but I could tell it was a person, or a scene or something. I mentioned this to many of my medical providers. Finally, one doctor said it was something called hypnagogic hallucinations.
Creepy crawlies – when I was very tired, usually in the evening, my entire being felt totally discombobulated, everything throughout my body felt unsynchronized. It was a physical and mental sensation. It was a disturbing sensation that was made worse by sounds and light. There would be a throbbing in different parts of my body that was not in the same rhythm as the throbbing in another part of my body at the same time. I wanted to curl up into a tight little ball and be thrown down a dark hole were nothing could disturb me.

Thank goodness these things have faded. They still come back sometimes but not to the degree they where in the early years. Does any of this sound familiar to you?

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K.I.S.S. (Keep It Simple Sweetie) – Part 2

by Linda W. Arms

Understanding spoken communications is often difficult with an injured brain. In a conversation, there is SO MUCH happening that you don’t think about. The brain that is receiving the words/sentences is very busy as it processes all the pieces that make up the spoken communication. There is the volume, speed and clarity of the words as I mentioned in my last post. Here are a few more tips for family, friends and caregivers to help us with injured brains understand things more easily:

Don’t use a lot of complexity in your conversation – long sentences, big words, new words, acronyms add to the complexity that needs to be deciphered by our brain. An injured brain often has to strain to work through this complexity making it fatiguing and sometimes frustrating for the person trying to understand what is said.
Don’t use double negatives – I have a real problem with this. When someone says “Isn’t it true that you did not eat breakfast?” My brain gets tangled on unraveling the two NOT’s and I don’t know how to answer. This is just one example but people often speak with several negatives in a sentence which confuses the heck out of me and my brain is stumbling about trying figure it out. Fatiguing…. Frustrating….
Try to tone down the emotion – Adding a strong emotion to what is being said is another part that needs to be processed by the brain. For me, negative emotions that the speaker is conveying in their conversation is a burden for my brain even when the emotion is not directed at me. Anger or frustration in the conversation is another piece that our brains have to do something with as we are trying to understand what is being said to us. It gets in the way of easily understanding.

And there is more to say about all this… next time. Just remember, K.I.S.S. (keep it simple, sweetie) if you want the person with the injured brain to be more successful in understanding what is being said, and you don’t want to create unnecessary fatigue or frustration.

Part III of K.I.S.S. – “Keep It Simple Sweetie”

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K.I.S.S. – (Keep It Simple Sweetie) – Part 1

by Linda W. Arms

This is for family, friends, caregivers and the many people who are part of providing medical services to those with brain injuries. First of all, thank you for your care and concern during our journeys from our brain injury event to where we find ourselves today. It is not easy for you either since you probably have to do a lot more because of things we aren’t able to do. You also have to have an extreme amount of patience. It is not an easy job. We want you to understand us but sometimes it hard to know ourselves.

Comprehending what is said to us is a big problem for many of us with a brain injury. The words coming at us often don’t sink in for a variety of reasons. This makes it difficult for us to understand what is being said and it can be very fatiguing and frustrating. Once we’re “brain fatigued” everything else is difficult until we have a chance to recover.

Here are some very friendly reminders to make communication easier for us:

Speak slowly – my injured brain has to hear the words and also process them. My brain can’t keep up with what’s coming at me if words are coming too fast. I have to make my brain work a lot harder to keep up with a fast pace (sometimes I don’t even try).
Speak clearly – it takes a lot more brain processing to hear the words when someone is mumbling or speaking towards a different direction so sound is not coming straight at us. Someone with a brain injury may have to spend a lot of brain energy just to hear the sounds let alone process what the words mean.
Get to the point more directly without meandering into other side topics – The injured brain may have problems remembering what was said 60 seconds ago especially if unfamiliar topics are being discussed. We are trying to keep track of the conversation but if there is a roundabout presentation of the topic of discussion we will often get lost. I have found myself trying to remember what seems to be important points but the speaker is going off in other directions. My poor brain is working hard just to remember those points as other words are coming at me that don’t seem to be part of the main topic.