communicating after brain injuryTag Archives

More Is not Better!

by Linda W. Arms

I thought I’d shared this post again since we’re in the beginning of the holiday season. This is the time where there is SO much of everything which is often very taxing for a person with a brain injury.

Post 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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The Brain Fairy – Milestones

Thank you for your support and participation on my Facebook page, The Brain Fairy – Living with Brain Injury and on my website www.thebrainfairy.com As of this month it has been two years that I have been doing this. It has helped me in my journey of recovery. I feel that I cannot say, or that any of us can say, a journey to recovery. To me, that means recovery is a final destination. I think that after a brain injury there is no end point in recovery. It keeps going. We can’t stop working to make progress in improving or maintaining the improved functionality of our brain especially as we also start experiencing the effects of aging.

We also can’t stop raising awareness of brain injury whether it’s due to traumatic brain injury, stroke, aneurysm, anoxia or whatever the cause. I did not understand the impacts of a brain injury before it happened to me even after seeing it happen to people I know. I think there’s been much more awareness in recent years due to the soldiers returning from the Middle East wars and the NFL players suffering from brain injuries. But there’s still a long way to go in educating people about what a brain injury does to you.

About 3 years ago I was talking to my husband about some problems I had that day and I said “I guess the brain fairy just wasn’t helping me that day”. That’s where the name of my website came from. How our brain works and how it repairs itself is still a mystery. Medical professionals can do much to help in recovery but there is still a mystifying process that brings our brain back to a better place after a brain injury. For me, the “brain fairy” has been that elusive thing that has caused the problems and healing associated with my brain injury. I do not understand how it works but slowly things have worked better in this mysterious world of my brain.

When I started the The Brain Fairy I was dabbling to challenge my brain but hoped that someone would visit and get some benefit from the information available on the site and from the posts I wrote in my blog. My goal was first to get maybe 50 views a month on my site but I am happy that so many more people visited than I expected. As of a couple of evenings ago, I have reached 30,000 views for the 2 years in existence.

So thank you all for your interest and support. You have helped me make my brain get better. Two years ago, I needed perfect silence and needed to be well rested to write anything I posted or to do any of the maintenance work on the website. Yesterday evening after a busy day of doing other things, I wrote this, and I was listening to music at the same time. I couldn’t have done that 2 years ago. I have gotten so much better in this time in so many ways.

Keep visiting me and I’ll keep visiting you to share our experiences and important things to know about the brain.

Linda W. Arms (a.k.a. Mina Kitty)

Visit me:

Web site and blog – www.thebrainfairy.com

Facebook – https://www.facebook.com/pages/The-Brain-Fairy-Living-with-Brain-Injury/288317964619749

Email me at: MinaK@thebrainfairy.com

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Having a Brain Injury (it never ends…)

by Linda W. Arms, June 22, 2014

What is a brain injury like? It’s not like a broken leg. It’s not like most other medical conditions or diseases. It’s not getting old and experiencing “senior moments”. It is very different although many people look at it as “oh, you’ll get over it” or “I have that too, it’s what happens when you age.”

A brain injury, whether from trauma, stroke, aneurysm, lack of oxygen or other cause, happens quite suddenly – out of the blue. You are fine; everything works; your mind is active and full of ideas and dreams and thoughts; you walk about without a problem. You can speak and comprehend what someone is saying while you cook or do something else. You read, watch TV, drive, cook, solve problems, make decisions….. Most likely you don’t think about your brain at all but it is what is making those things all possible.

After a brain injury, you suddenly are unable to move about or think like you did before. Brain injuries vary in their effect on a person depending on the severity and which parts of the brain were damaged. In many cases after a significant brain injury, your mind is blank without any thoughts unless you force them to be there. You have to concentrate on thinking through a simple thing in your head because you lose your focus very easily. You are in a fog. When you try to think through a simple thing you feel like your head is full of thick mud or dense cotton that muffles and gets in the way of thinking clearly. Sometimes it’s impossible to think even about the simplest thing, the blankness just returns.

There is a sense of other worldliness around you. Your senses are muffled. Your sense of presence is gone. You feel you are not really part of what is happening around you. You can’t experience everything going on around you. Your view into the world around you is very small like looking through a little tube. Your awareness is missing. You often just stare off into space with emptiness in your head and in your eyes.

You have problems understanding what people are saying to you. You have problems talking and explaining something you want to say. You can’t find the words, the words don’t come out right, and sentences are hard to form. You have few emotions, there is no joy, there is no happiness, there is no anger, there is no sentimentality, there is little except maybe some sadness and nothingness.

You have to hide in a safe, quiet place because the world is too chaotic for you. You can’t go to stores, you can’t hear sounds, you can’t have too much movement around you before you feel so overwhelmed, you can’t see straight or walk right. You have to move slowly because you don’t have the strength or energy, you have to be careful walking through doorways or passing by things because things aren’t really where you see them to be. You have odd sensations in your head, you have odd tingling in parts of your body, you may not feel pain the way you used to.

You’re cold all the time, it’s hard to get up out of a chair or out of bed because you are so weak. You are tired, always tired. You sleep and sleep for sometimes 14 – 16 hours a day. You get up in the mornings and it takes hours to feel alert enough to function. You sit there waiting for the disturbing sensations in your head to settle down while your brain is adjusting to being awake. Sometimes you can’t get there… you have to go back to bed and sleep after getting up just an hour or two earlier.

You have a sense of great loss. You are not the same. For so many reasons, the essence of who you are is gone. You don’t do what you used to do like work or drive or be with friends. You almost don’t care sometimes because it’s all you can do to think about getting through the day with the chaos that is now part of your world.

You feel fragile, broken. You feel damaged. How do you pick up all the pieces and make progress.

You think “what has happened?”, “did this really happen to me?”, “is this all my life is going to be like?” “am I ever going to get better?”, “it’s been 6 months and I’m still not better”, “this is terrible but I have to be grateful it’s not worse and that I’m alive”.

It goes on and on and on for months, for years but gradually you get better. You make progress but it is very slow. It takes years. Sometimes you encounter relapses. Sometimes you have symptoms you thought were gone but they are back because you are stressed or tired or over-stimulated or sick.

Someone very close to me recently asked me about my brain injury recovery and said, “When did it all end?” I said, “It didn’t end”. It never ends. It’s always there sometimes better, sometimes worse. There are more days now where I don’t think about it because I do quite well. I am grateful for the progress I’ve made and most people who didn’t know me before wouldn’t know the difference. But I know. I remember how I used to be. I haven’t gotten it all back but I’m still working on it. Like so many of you with brain injuries, I realize how strong I have been to have gotten through all this and I am grateful I am doing as well as I am. I am proud of myself and the hard work I’ve put into my recovery. I’m sure many of you feel the same way.

What does a brain injury feel like_

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How to Be Successful When Making a Phone Call Having a Brain Injury

by Linda W. Arms, dated March 29, 2014

Many things become difficult after a brain injury. We take our ability to perform everyday tasks for granted until after our brain becomes damaged. Simple things become a challenge. For me, simply frying an egg and turning it over was extremely difficult and exhausting. A phone call was a multi-day undertaking.

Making an appointment was very challenging for me since speaking, comprehending, thinking, and processing visual input were difficult. I would prepare a day ahead by looking at my calendar and figuring out which days I could potentially go for an appointment. I had to consider also how I would get there since I couldn’t drive. I would note which days and times would work. I would write down what it was I needed to ask and the phone number. Just this process by itself was overwhelming and left me unable to actually place the phone call. Usually the following day I would review my notes and make the phone call. I was often successful when I followed my process, however, if the appointment times that worked for me were not available I couldn’t think through alternate dates while I was on the phone. I would write down the options I was given for appointment times and tell the person I would need to call back.

Here are some tips for being more successful when making a phone call. During the extremely challenging years of my recovery I did this to help myself get through a phone call and accomplish what I needed to do.

Prepare before making the call. What do you need to accomplish? Are you trying to make an appointment, are you trying to find the answer to a question you have, are you trying to purchase something? Prior to calling, write these things down so you can stay on track during the phone call. Remember there are many things that can lead you off track like the phone menu system of the business you are calling, or the person who answers may ask all sorts of things of you before you can get to what it was you were calling about.
Write the phone number on the same piece of paper that you are writing your notes on. This way you don’t have to search for the number right before you call. If you get interrupted, the phone number and your notes are in one place so you don’t have to go through the effort of re-thinking and locating information.
Review any paperwork, like an invoice or catalog, you need to be familiar with prior to making the call. With a brain injury, it may be difficult to have a phone conversation at the same time that you are reviewing written information.
If making an appointment, have your calendar ready. Review your calendar prior to making the call so you know which days will work for you and which ones will not. Write down the days and times that will work or circle your calendar. Remember there’s a lot going on during a phone conversation. Prepare yourself ahead of time with the information you need.
Prior to making your phone call you may want to look at the business’ web site to be better prepared and informed about their product, business hours, location, etc. This may help you to know what questions to ask during the phone call. It may be difficult to think about all these details when just calling an office and not being prepared.
Make your phone call from a quiet location that is free of distractions.
If you can, make notes during your conversation to keep you on track with what you are learning and what you need to ask.
If the person is speaking too quickly for you, ask them to please slow down.
If the phone call doesn’t end up like you rehearsed just tell them you can’t make a decision now or aren’t sure if that appointment date will work. Tell them you’ll call back. Give yourself time to think through the problem that presented itself during the phone call and call back when you are ready.

I still do this but can now do it right before I make my phone call. My brain needs all the help it can get so I know that by preparing in advance I can be more successful. What about you? Do you have some suggestions to add regarding making a phone call with an injured brain?

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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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We Are Imperfect Customers

by Linda W. Arms

This is a different kind of post but wanted to share with you. I’m sharing this with many customer service providers and groups via LinkedIn and other sites. Here it is:

Our Imperfect Customers

How do you view your customers? Are they like you? Are they at the top of their game as you might be? Probably not. We have many imperfect customers who need special attention or, at least, an awareness of their challenges. I used to always see my customers as having similar cognitive abilities as I and my co-workers. After suffering a brain injury 8 years ago, my views have changed. There are millions of people in the United States who have cognitive impairments so you might take a second look at who is your customer.

Those of us with cognitive impairments travel, shop, visit web sites, visit business offices, talk on the phone, drive …. you name it. For many of us, we do it with great difficulty. When we’re done, we are often exhausted. For example, just doing a simple thing like grocery shopping was a tremendously difficult task. There were days I would decide not to go, or I’d walk into the store and right back out again because it was too overwhelming; other times I’d fill my cart with an item or two and then just leave it and go home; or after shopping, I’d go home and nap for 2 hours.

I spent over 25 years in a customer service role providing a variety of financial and information technology services to a wide range of customers. As a manager of a help desk and other I.T. services, I was always looking at “who is my customer” and “what do they need”, trying always to improve their experience with our services. I looked at our Help Desk customers in terms of their role in the organization and their different needs (engineers, administrators, highway maintenance workers, etc.). I saw other sets of customers based on how they accessed the organization’s network (hard-wired, dial-in, VPN, etc. ) to work with various applications. There were other types of customers also but I never considered the cognitive health of those we served.

There are many people like me whose cognitive abilities have been affected by trauma, disease or other causes. I look fine and have since my accident but in the early years of my recovery my cognitive abilities were greatly affected. Impaired cognitive abilities cause problems with awareness, perception, reasoning, ability to focus, memory, judgment and many other things. Since every injured or diseased brain is different, there are many symptoms. Our brains control everything in our bodies including the ability to walk, see, talk, comprehend written and/or spoken communications, perform math calculations, make decisions, balance, move our hands, hear, and the list goes on and on. Most of us have problems with the speed at which our brains process anything. The world moves and speaks way too fast for many of us. Many people with an injured or diseased brain have problems with our visual systems. Some of us have problems with sounds where we become overwhelmed by too many sounds, too much volume, and sensitivity to certain types of sounds.

How Many of Us Are Out Here in the United States?

1,700,000 people suffer a traumatic brain injury each year
800,000 people suffer a stroke each year
70,000 people are diagnosed with a brain tumor each year
30,000 people suffer a brain aneurysm each year
5,000,000 people live with Alzheimer’s
There are many others with diseases that can affect cognition including Parkinson’s disease and Multiple Sclerosis
There are many who live with an acquired brain injury due to anoxia, bad drug interactions and other things that damage the brain
One in 5 veterans returning from the recent wars has a brain injury

The Challenge of Phone Calls

Interacting on phones can be very difficult for those with cognitive problems. There are many steps that our brain needs to process when we make a call and we can easily become overwhelmed. First we have to find the phone number and dial it. Next, we have to comprehend the automated message or what the person on the other end is saying. Our brain has to process the accents or dialects of the person. We have to try to adjust to the speed of their speech. Our brain has to work harder when the person is not speaking clearly or there are distractions we hear in the background. We may not be able to keep up with the speed at which the information is coming to us. Unfamiliar terminology throws us off. Complex sentence structures overwhelm us. Sarcasm and innuendo may not be understood.

The Overwhelm of Stores and Offices

Walking into a store or office can be overwhelming with a cognitive impairment. We may be having problems with balance so as we walk in, see and process our relatively unfamiliar surroundings, we are immediately thrown off. Our brain is working overtime to address just the balance issue.

Then, there are so many things in the establishment that we see and our brain has to process. Fluorescent lighting is more difficult for our brains to process adding more to the overwhelm we are feeling. Next we have to find what we are looking for, we have to scan objects, make decisions.

We have to interact with the office worker or clerk who may be speaking way too fast for us, or mumbling, or speaking with an accent. Constant interruptions throw us off. Everything becomes more difficult. When someone asks us a question, it may take us a few moments to respond. Many times, because we have not yet responded, the person asking the question will not pause for very long before asking again and trying a different approach. Not good – we need some quiet moments to gather our thoughts and get them out our mouth. Constant talking interferes with our ability to think.

The Get-Me-Out-of-Here Web Sites

Busy, busy web sites are everywhere. People with injured and diseased brains have loads of issues with these web sites. Remember many of us having problems processing visual input. Our brains have to process the words we see and comprehend their meanings. Our brains have to process the moving components on the page. We have to process the choices we need to make from the menus. We have to process every bit of it just like a computer processes every step of a routine.

Flashy sites with many graphics and moving components are everywhere. It seems that the flashier, the better, but not for many for us. We have problems with many types, sizes and colors of fonts covering the pages. There are actually fonts that are easier for our brains to process but it is usually not a consideration when a web site is built. Sites with dark or brightly colored backgrounds can be very difficult to look at and visually process.

My brain injury caused problems with visual processing. I could not look at some sites without getting dizzy, almost nauseous. I could not look for more than a few moments. When I did stick with it, trying to find or understand the content was painful. I could not think because of the visual effects of the web page. There was one site I did visit fairly often but it had a moving graphic which I covered by taping paper to my screen.

As you can see, I am now a different kind of customer. I look fine. I’m much better than a few years ago but I still have problems, like with that young man yesterday who spoke too, too fast and actually made me feel dizzy and not see straight. I had to ask him several times to repeat himself. My brain just does not take in the information that quickly.

I now see that there is a whole different set of customers that I never considered that deserve some acknowledgement. I am one of them. We use your services. We buy your products. We visit your web sites. We use your help desks. We pay you money. Perhaps you can learn more about those of us with cognitive impairments so you have more awareness of our needs. There are so many of us, the imperfect customer.

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More Is Not Better

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

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

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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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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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Shunned

by Linda W. Arms

People with brain injuries often feel they are looked down upon, avoided, ignored and just not accepted by other people. We are probably right in feeling that way sometimes. I know that for several years after my injury I did not feel worthy or at the same level as other people. In fact, I never went back to the office I had worked at for over 18 years. I avoided contacts made by the few who tried to reach out to me. I was almost ashamed to show myself and interact with those people because I was not as capable as I was before. I expect many of you had similar experiences.

At about 18 months after my injury I started going to water aerobics due to a recommendation from my physical therapist. It was challenging at first between the loud music and trying to figure out how to keep up with the instructor and a pool full of mostly women aged 65 to 80-something. I immediately knew I had to wear ear plugs to tune out the music and the shouting of the instructor. The older ladies asked my name and talked to me a few times at the beginning, even in the locker room when I didn’t have my ear plugs in. I had problems communicating with them. Too many talking around me or at me, I couldn’t always respond. Often when I did respond they were already on to something else. I was too slow in gathering my thoughts and getting the words out of my mouth. Sometimes I misunderstood what they said and sometimes I said things that were kind of stupid because I did not understand what they were saying. After several visits I mentioned I had a brain injury. I think they just all gave up on me. I just started getting looks and getting ignored. They stopped talking to me. I think perhaps they also thought I was unfriendly. It was hard to listen to understand, say something useful, have a smile on my face, keep my balance, block out the distracting sounds and movements around me and do whatever else it was that I was trying to do, like get dressed, or open my locker.

After a while we just ignored each other. I didn’t have to try to keep up with the elderly ladies and they didn’t have to deal with me. I’m happy to say that the instructor was always very nice to me. I still see her at the pool and she always gives me a friendly “hi”. I’m doing better now; I don’t do the water aerobics and moved on to other things. I expect if I did I could interact with everyone quite well. I have much more confidence now to talk to others and most don’t realize I even have a brain injury. I’m lucky, I know there are many who never get back to the point of doing this well.

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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.