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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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Preparing for the Holidays

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:

  1. 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.
  2. 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?
  3. Prioritize – only do what is important.   There are probably things to do that you can put aside until after the holidays.
  4. Ask for help – with the shopping, the cooking, the cleaning or whatever else it is.
  5. 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.
  6. Eat properly throughout the day to nourish your brain so it can do a better job for you. Drink recommended amounts of water.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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

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.    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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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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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:

  1. 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.
  2. 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.
  3. 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 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 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:

  1. 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).
  2. 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.
  3. 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.

Simple

Find out more about making communicating easier in my other posts:

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

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

 

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