Short essays by Douglas Winslow Cooper, Ph.D., the author of TING AND I: A Memoir of Love, Courage and Devotion, published in September 2011 by Outskirts Press (Parker, CO, USA), available from outskirtspress.com/tingandi, Barnes and Noble [bn.com], and Amazon [amazon.com], in paperback or ebook formats. Please visit us at tingandi.com for more information.
Friday, June 8, 2018
WHAT EVER HAPPENED...? "A Brain Injury List"
“HOW COME YOU HAVE A
NOTEBOOK?” (A BRAIN INJURY LIST)
injury can lead to many changes in your life. Some of my changes sometimes went
unnoticed by others (like my increased sense of smell, sound, and taste).
Others were noticed (and commented upon) ….
student long ago, I took lots and lots of notes. Back then, it was noticed as a
positive thing, because if a fellow student had a question about something
taught, I was the one to ask. As a teacher, I took plenty of notes at meetings
and other events. If something was said at a meeting, a fellow teacher could,
and many times did, later on ask me who said what, when the subject was
But now, I'm asked this having-a-notebook question by
several people in various locations and situations. Since I'm no longer a student
or a teacher, I guess it seems odd to others that I still take fast and furious
have a notebook for every event I attend. That means notebooks go to doctor
appointments with me, to church, to special celebrations and events, etc., etc.
I even have scribble pads in my car, so when something pops into my head, I jot
it down at the next stop before I forget.
is one of my many coping mechanisms for my brain injury. That's the way I
function better and get things accomplished. I spend lots of money on Post-it
notes, small pads, journals, and notebooks. This system works for me.
as in anything you do that others don't do, it is questioned. At Christmastime
2014, I was at a beautiful church gathering to hear a wonderful woman sing and
talk about her life. The group was sponsored by our church’s WOW– Women of the
Word. It was a Christmas celebration, and the church was decorated beautifully.
Women from all age brackets attended, including little girls and teenagers,
would be the kind of event that most people would just sit back and listen to.
Not me – I took out my “church notebook” and began to scribble the date
(Saturday, December 6, 2014). This woman next to me, Barbara, a pleasant person
whom I've known for many years in various settings, asked me the question that
I have titled this chapter with, “How come you have a notebook?”
got me thinking: that will be the name of the chapter in which I list all
the things that I have learned about brain injury, since my injury.The population at large needs to be more sensitive to those of us with this
“invisible disability,” as it is referred to at the support groups I attend
with others who have also experienced changes in their lives due to some brain
trauma. More than one of us have been asked something like, “Why don’t you
work? You look fine.”
notebook question actually helped me, because it pointed out clearly how others
want to understand my behavior but somehow, sometimes, don't know how to ask.
She was wise enough to see my reaction and said something in addition to reduce
my obvious agitation at having my “unusual” behavior pointed out. She has heard
my testimony at church and probably has read my entries in our church’s prayer
chain, but still – clarity for behaviors that stand out as different is needed,
so here we go….
reading this book because someone you know has had a brain injury, then you
probably already know that each brain-injured person is different. Someone once
described it as being like snowflakes – no two brain injuries are the same. As
Dr. Lois Tannenbaum states, “If you have seen one brain injury, you have seen
one brain injury.”
why this list of things that have gone on with me since my tumor was removed
and since I learned that I have permanent brain damage is just that: things
that have gone on with ME. Some of this list will pertain to other
brain-injured people. Some will not.
point is: please be sensitive to anyone whose life has been altered this way.
It's hard enough for the person to accept the changes. It's even harder when
loved ones, friends, and others don't get it….
with brain injuries may look normal, with excellent vocabularies, but you don’t
know what is bubbling right under the surface.
face challenges from other people every day because I look like them and I talk
like them, but what is not noticeable until you “push my buttons” is what's
brewing right beneath the surface in my brain. I rarely get to turn off my
brain’s hyperactivity and get to rest, so I'm thinking, thinking, thinking all
the time. Sometimes this is helpful, but many times, it is not!
had too many meltdowns to count! These displays of bad behavior have taken
place in lots of settings – restaurants, doctor appointments, vet appointments,
church. Yes – even in church. There are some folks in these places who trigger
upsetting is that, though I have a letter from my neurologist, Dr. Tamai, which
I show to tons of people, I still am not understood. Sometimes I’m so triggered
by others who rush me, I forget to show them the letter.
My doctor-written medical
description about my tumor-caused injury is stated as “non-traumatic,” but
believe me, there is plenty of trauma involved with a life that’s changed forever
due to anything that’s taken place in your brain.
wording is the medical definition of what has happened to me. The BIANYS (Brain
Injury Association of New York State), when I attended a conference they held
the spring of 2014, reminded me that “A” stands for “Acquired.” Though these
conferences had been held for many years before my first attending, I only
learned of them after my brain surgery. What’s ironic about that sentence is
that I was a special education teacher and actually had students with TBI, but
I didn’t know much about brain injury back then.
And that’s why I decided
to write this book. It became quite clear to me that much is not known by the
public about this condition. I’m quite sure that some of the things I outline
here about brain injury will have some family member somewhere say, “That’s why
Uncle So-and-so behaved like that. Remember all the hits to his head he took?
He probably had a brain injury, but we never knew that back then.”
That’s what I’m hoping
for with all of this work – that one family/workplace/church/etc. learns
something here that helps that group forgive someone whose behavior may have
disrupted the wellness for other group members.
My mother has said to me
more than once that maybe my brain tumor was there for much of my teaching
career so I could spend the second half of my life teaching others about
something it caused. I know that the behavior modification techniques that I
used in the various schools I taught in, I now use on myself each day. I know
for a fact that I taught MANY students who were better behaved than I have been
post-surgery. I may look “normal,” and I have an excellent vocabulary, but that
is only the “surface.”
So – the following long
list is the things I’ve compiled that are attributed to my brain injury. Many
of the items on this list are experienced by others with whom I attend support
groups for the brain-injured. I had many folks there read my lists and check
off whether they had experienced the same things I had. Of course, this is not
a comprehensive list. This is MY list with feedback from others. As was stated
already, no two brain injuries are identical. But – this is what I know so far
about this “invisible disability”….[I’ve added some words about certain ones here from the checklists I
wrote that other brain-injured people reviewed. I wish I could list all the
things others added to my lists, but this book is so big already!]
·Impulsivity: It leads to
problems later on sometimes. I ought to “think it through” first. I’ve made
many bad decisions impulsively. I do not think things through clearly enough
before I speak and/or take action. One unsafe, impulsive decision I’ve made too
many times is to cross my nearby train tracks when the red lights begin to
flash. This is a STUPID decision, and I NEVER did that before my brain was
injured. I had much more common sense pre-brain-damage. When I was honest, and
I told Aiden what I’d done, I got scolded once more. The only time I do this is
when I’m alone in the car, I’m completely safe when I’m driving with my dog or
other people. [Many people in the support groups I participate in said that
impulsivity was a problem for them, too.]
·Stress: It happens WAY
more often now. All of this increased stress has led to ulcers in my esophagus
and stomach, according to my gastroenterologist. [Again, a majority in the
support groups agreed stress was a problem.]
·Overwhelmed: When slight
pressure is on, it feels much heavier. I ought to do less. I constantly agree
to do something without thinking it through.I easily become overwhelmed by multiple things that are
taking place at the same time. For example – if I run the sink water to wash
some dishes, and at the same time a clock is letting me know by its song that
it's the new hour, and the phone rings, I answer the phone and forget that the
sink is filling up. I have flooded my kitchen by being overwhelmed like that!
That same “overwhelmed” happened a few times at my stove. I started three minor
fires, and when I told that to my doctors, they suggested I stop cooking until
I can do better. I live in a condo, and, therefore, if I started a fire, I
would hurt others also.
·Irritability: I am so much grouchier since my brain injury
occurred. I’m not saying that I wasn’t ever grouchy before, but nowadays I’m
WAY too easily triggered by others’ insensitive comments, sarcasm, rudeness,
selfishness, inability to let me vent, etc.
For example – one of the problems I have with MANY people is that when I am
venting about something I’m upset about, they automatically give me the other
side’s opinion before I even calm down. I call my venting “verbal vomit,” and
if they would just let me get it out, I’d feel better. Instead, they offer other
viewpoints immediately. If they just waited, I would be able to discuss it
better. When someone is actually puking, do you let them get it out, or do you
offer them food???I think you get the
·Memory: I forget
repeatedly every single day. I forget things that shouldn’t ever be easily
forgotten at my age such as: Did I brush my teeth? Did I lock the car? Did I
pay that bill? And so on. I have piles galore of dates and things to remember.
This forgetfulness is very dangerous in the kitchen preparing food – so, as I
stated already, I don’t cook. Some people comment how well I remember dates.
It’s because of how many places I jot them down so I won’t forget them. Also –
I forget names of people ALL the time. I really hate that! I have forgotten my purse
many places. I do remember things if I have lots of lists. Unfortunately, there
are chunks of my life I have forgotten. People have to fill me in about some
parts of it. I have HUGE deficits in my memory
nowadays. Many people compare themselves to me with sentences like, “I forget
all the time.” But, what they don't realize is how it literally brings me to
tears when I can't remember something simple like a computer password that I've
used for several years. (And I only have two passwords to memorize.) I used to
remember SO much more than I can now. To go from an excellent memory to
forgetting many simple things every single day is very upsetting. I also forget
the names of family members, friends, pets, etc.[In one support group, 9 out of 9
people identified this as a problem. In the second group I polled, 14 out of 14
·Repeats: When I have to do something that I tend to
forget, I say a phrase repeatedly in my head so I get it right. Recently, I was
at a brunch and the tea I ordered came not in a tea bag, but loose, and had to
be strained. The last time I was at this restaurant, I repeatedly forgot to use
the strainer with each teacup I refilled, so I had loose tea floating in my cup
repeatedly. When I went back and tried stating to myself, “Janet, use the
strainer,” I got it correct in three out of four attempts. To the naked eye,
I’m enjoying a sip of tea. What’s really “brewing” is my angry thoughts that
I’m way too young to have so many memory problems! I also play the “repeat game”
when someone wants me to remember his or her name. The other day, I was at a Bible
study, and a woman asked me if I remembered her name. I didn’t, so she told me
it, and then I said it over and over more than 100 times in my head so the next
time I saw her (a few days later), I was able to call her by name. I’m proud
not to have become offended by her question and to have found a method to
remember names. But, as I write this, I can’t remember her name!
·Sensory overload: I can’t have loud
sounds anywhere around me when I’m doing anything. Loud drums, someone
whistling, snapping gum, or clicking a pen is so painful. Also – flashing
lights, certain perfumes or candle smells, spicy foods (and so much more) hurt
my head. I can only be in a bowling alley for a couple of minutes due to how
loud it is. Once, I had to leave the gas station because their pumps had a TV
broadcast playing the news, and I couldn’t hear myself think as I tried to pump
gas. I have to look away (if I’m not the driver) when I see cops put on their
lights to pull a car over. The lights are excruciating. I have to wear
sunglasses in certain places due to lighting. I’ve also had to wear sunglasses
indoors because I cried so hard that I’ve lost all of my mascara. I’ve been
teased about my indoor sunglasses, which makes it more embarrassing. A couple
of questions I find particularly annoying are, “Do you think you’re a
superstar?” and/or “Why do you think you need sunglasses inside?” I don’t know
if these questions irritate others with brain injury who need to wear shades
indoors, but they sure do aggravate me! Do I ask you, “Why are you covered in
tattoos?” or “Why do you dress like that?” (Which could be said to the two
people who recently asked me these sunglasses questions.) Leave others alone
unless you have a meaningful question. These types of questions, in my opinion,
are sarcastic, immature, and just plain rude. I’ve had to leave restaurants
because of the loud clinking of silverware, plates, instruments being played,
etc. As I heard on the National Geographic Channel’s show Brain Games, New York City’s Times Square is “sensory overload on
steroids!” That is 100% accurate for the brain-injured! Any time I visit there,
I have to go somewhere quiet, such as a restroom, so I can decompress. Times
Square is a great place to be, but only in small segments of time. These are
just some examples. I could list tons more! I strongly recommend to the
brain-injured, that after a very busy day (such as my trips to NYC’s NYU
Langone Medical Center), take the next day off. Plan nothing and rest, because
the brain needs at least a day to recuperate from the over-stimulation. [Again,
agreed to by majorities in these groups.]
means that I’m overly sensitive of words and actions as well as lighting,
noise, smell and on and on and on. I use earplugs for loud church services with
drums and in noisy stores. I have to leave certain restaurants which have
strong food smells – for example, St. Patrick’s Day servings of corned beef and
cabbage. (The only reason I went was because Aiden enjoyed that menu choice.)
This sensitivity list could go on for pages! Just know that I once had to put
my head down and block my nose, eyes, and ears at a concert with four drum sets
being played simultaneously while strobe lights were blinking and incense
filled the air. I was crying because it was a warm-up band for the artist I was
really there to hear perform. My seat was so close to the stage, it would have
been very difficult to exit politely. In the old days, I would have enjoyed the
warm-up group. Instead, I was practically curled up in a fetal position on the
floor in front of my seat so I could later listen to the music I came for.
Looking like that in front of others was embarrassing to me and not understood
by the folks who stared and giggled. Also, I tear up at the simplest of experiences,
like: little animals scurrying across the road so they don’t get hit, TV
commercials, a baby smiling at me, certain songs in church or on the radio,
someone teasing me, abruptness from someone’s tone of voice, Mother’s Day since
I’m not a mommy or a grandma (or when I’m in a group of women and all they talk
about is their children). Speaking of grandmas – once I teared up at a brunch
that served sausage that tasted just like Grandma McColl’s did. It was
something I had only tasted when she cooked. I wept and wept over missing all
of my grandparents. I was supposed to be enjoying a brunch. The tears there,
and many other places, lead to lots of mascara purchases. This is another list
that could go on and on….[Again, a majority of
those in the groups surveyed agreed.]
Smells are overly powerful to me. Once, when I was almost at the
completion of this chapter, my landlord came over to paint my screen door. The
fumes were so powerful, I had immediate, very painful headaches two days in a
row after he was done each day. This never used to happen before my brain
injury. It's just one more example of how life is permanently different in ways
that others wouldn't even notice. I had to take several Extra-Strength Tylenols
to feel better, and leave my own place to write this, all for a neighborhood
·3-D: I learned at a brain-injury support group
(and then checked with my neurologist for confirmation) that I shouldn’t ever
use 3-D glasses. They can cause seizures for the brain-injured even years
later. I shared that information with my favorite movie theater (the Lyceum in
Red Hook, NY). Learning this information first from a support group rather than
from a doctor’s office is another reason why I decided to write this book. I
thought maybe my experiences could help other families.
·Money skills: I really struggle
with counting out money, overspending when unnecessary, and anything that
relates to being money-wise. I’ve been teased about this by some adults who
should know better, which hurts my feelings. On the other hand, at a local nail
salon in my mall, two former students of mine that I bumped into had to help me
pay for my appointment because I gave the cash register girl the wrong amount.
My students and I laughed when one of them said, “Aren’t you the one who taught
us money skills?” Yes, A., I was! I have a difficult time with my checking
account. Sometimes, I will write a check for $38.00, but record it as $18.00,
so I am off by $20.00. I have to check and re-check every check I write.I
was never great with managing my money. But, before I was on disability, I
didn’t have to be so careful. I made a teacher’s salary, and since I had no
children of my own to support, I wasn’t as financially tested as I am nowadays.
Back then, I could spend what I wanted on trips to Disney World, dinners out,
students’ birthday parties celebrated in school, etc. But now I have to
be way more careful, and I’m really not too good at that. I had been building a
savings account from my very first jobs back in high school (the Greig Farm in
Red Hook, NY, and Four Brothers Pizza in Rhinebeck, NY). Most of that life
savings is gone now. Not all of it was spent on help for my behavior after the
brain surgery, but the majority of it was. I’ll explain more about that in the
chapter about help I’ve received. Over-spending on others and on my version of
retail therapy, “stress shopping,” is another part of my story…. What also is a large problem for me is counting out
change. I count quarters, dimes, nickels, and pennies very slowly when I'm at a
cash register. Most of the clerks are patient with me. Unfortunately, lots of
people in the lines behind me in various stores are not so patient. Once I was
in line at Adams Fairacre Farms in Kingston, NY. I could not get the change
counted quickly enough for the woman waiting to have her groceries rung up
right after me. She said something really snotty and then bragged about being a
teacher. I certainly hope she treats her students with better correcting
skills. Her rudeness made me thank the clerk, Amanda Quick, because she was
kind and patiently helped me.
·Balance: Walking down
stairs frequently requires holding onto the rail. If there is none, I hold on
to someone’s arm. At church, if I sing on a set of movable stairs, I stand by
the railing and ask nice women to help me step down when our song is over.
(Thanks, Anne, Rita, Christy, Nancy, Sandy, and Marian!) I have fallen many
times in various places. Once, I fell down a flight of stairs at Aiden’s house
when I was sent there from one of his hospital stays to gather his stuff. I
trip over things practically daily. I can’t ride a bike anymore. I have to sit
to get dressed each day, since I fell too many times putting pants on while
standing, like I used to be able to do. Going up a flight of stairs is fine,
but I have to remember to stop climbing on benches or chairs to hang stuff.
I’ve lost my balance too many times doing this. I need a “spotter” when there’s
a job like that to be done. A subscription I read regularly, Neurology Now: Your Trusted Source for Brain
Health, had an article by Amy Paturel, MS, MPH, with an excellent quote: “Balance
and coordination rely on high-level thinking,…, memory, and response time. As
that declines…because of a neurologic condition, balance becomes even more
compromised.” [About half of the groups’ members had a problem with balance.]
·Overly-observational: I notice so much
more than I ever did. Usually, this is unnecessary (such as people’s mistakes),
and it annoys others if I comment. I point out clothing tags sticking out of a
woman’s collar. Some women are appreciative of this, so they’re not advertising
their size. Another way this habit was helpful once was the day I followed a
school bus that had a left brake light not working. I pulled up beside the
driver, and she warmly thanked me for noticing the defective light.
·Comprehension: When others speak
too quickly at a drive-thru or on my answering machine or over the phone, I
have to ask them to slow down their rapid-fire speech so I can understand them.
This is ironic, considering how fast I talk. But, speaking and listening are
very different. The medical term for the condition I have is “receptive
aphasia.” This fast-talking, slow-listening condition of certain people with
brain injury annoys people who do not understand it. When I attend meetings or
visit certain doctors’ offices, the quick speech of others makes me confused
much of the time. I talk fast but I process slow.I speak at a very fast pace, but I comprehend much, much
slower! I have to take notes for everything to be able to absorb it and
remember it later. Back before my tumor was growing, I was such a fast talker
that one of my favorite high school teachers, Mr. Fish, nicknamed me “Rapid.” I
talk that way again now, but when that tumor was very large and undiagnosed, I
slurred my speech and spoke very slowly. Nowadays, I wish others would speak
slower to me so I could understand their words better. I also wish people who
leave messages on my answering machine would speak slower, because when they
don't, I have to replay them over and over to get what I'm being told. Also, I
really wish people would be friendlier to me when they are telling me that I
talk fast. And, there are some concepts that I am slow to understand. For
example, Aiden had to explain to me five years in a row, as we travelled there,
why Red Hook’s Apple Blossom Day was in the spring and not in the fall. I kept
thinking apples are picked in the fall, so why is this celebration in the
spring? Finally, I understood the “blossoms” part of his explanation.
·Sequencing: I have to do the
same thing over and over the same way, or I get completely mixed up. I do not
react well to “curveballs,” which is common for everyday life experiences.
Everything must be in ABC/123 order, or I become easily upset and/or confused.
I’m a creature-of-habit: each day, I have to do the same thing to begin my day.
First, I drive out to get my coffee and newspapers before I can do anything
else. Any time this pattern is changed (like a snow day when roads are
treacherous), I’m “off” for the rest of the day! I sit in the same place in
church each time. Change is very difficult for the brain-injured.
·Calendar skills: I carry around a
thick calendar where I paperclip in important things I have to do. This is the
way I remember important information. It’s also the way I’ve been teased and/or
questioned by so many others. If it works for me, why does it matter to you? I
have calendars all around my condo. I’ve donated a few to my church each year
·Literalness: I have a very
difficult time understanding analogies, jokes, newspaper political cartoons,
pronouns, and any other conversation that isn’t exactly point-blank specific. I
literally take everything literally!I minored in English for my
bachelor’s degree. I used to be excellent at understanding, and also teaching,
analogies. Nowadays, though, I scramble for meaning when anyone uses an
analogy, in either written or spoken form, although written is easier for me,
because I can go over it again and again until I “get it”…. When someone says
an analogy quickly, I usually just scribble it down and try to figure it out
later when it is quieter. One time a written analogy escaped me when I was
shopping in a lovely store in Woodstock, NY, called Lotus. It’s owned by Jamie,
the daughter of my friend Suzi. Jamie had to help me understand a sign in her
store. It read, “A closed mouth gathers no feet.” I stood there reading it over
and over and over and could not get what it meant. I finally asked her to
explain it, and in a soft, gentle way (just like her mother’s), she did. I
bought the sign because it is so true; i.e., open mouth, insert foot…. I
added it to the over 200 other signs I have around my home that help me learn,
think, smile, giggle, pray, laugh, and hang on. And, those signs are joined by
magnets, pillows, frames, calendars and so on that also have words on them to
help me get better. I read them often, even when I’m dusting them. I have
chapters here about these furnishings.
·Schedules: I am ruled by timing. Any change in a
routine is very difficult and nerve-wracking for me. I always was organized,
before I was sick, but now I border on obsessive. For example, if a dinner date
is changed to lunchtime, I become all flustered, because I have to be there way
earlier. I’m driven by the clock. If I go to a place to meet regularly and
there’s no clock in the room, I go shopping and install my own clock so I can
feel more comfortable there in the future. Because of this, I’ve dubbed myself “the
clock police.” I am constantly checking the clock wherever I am to keep on
schedule. In my condo, I have 12 clocks! One of them is a waterproof Mickey
Mouse clock for the shower. I’ve donated seven clocks to my church for rooms
I’m in for Bible studies,
volunteering, etc. All of these clocks make for “some fun” in the spring and
fall when it’s time to spring forward or fall back one hour. On a typical
Sunday, I get to church 30 minutes before the service begins so I can get “settled
in” and read the bulletin, put money in an envelope, donate
baked-by-someone-else goodies, etc. On those clock-setting days, I arrive 40 to
45 minutes early because I have lots to do with those extra clocks. I’m not
quite sure what this is all about. I just know I wasn’t like that before my
brain was damaged. I’ve actually dubbed myself a “clock freak.” One of my
clocks plays “Amazing Grace” every daylight hour. This helps keep me calm. I
sure do spend a lot on batteries! [I have to add a thank-you to Chris, whom I
had just met, who tried to fix this broken clock for me, and when he could not,
he bought me a new one!] This is a very difficult way to live, because changes
in schedule happen all the time. I need to learn to “go with the flow,” as my
cousin Lauren wrote on her emails, but this is truly a difficulty for me. I get
teased by some people for being early to functions, which I like to be to get
comfortable before the activity begins. Teasing doesn’t go over well with me.
[Scheduling difficulties were reported by a majority of the members of the
·Easily lost: When I drive
myself to a place I’ve never been to before, I get lost so easily. I’m
constantly making dangerous U-turns to get back to the place I missed. This
happened the day I met my editor for our very first appointment. Aiden was
supposed to take me to the Orange County Chamber of Commerce building (where
the appointment was scheduled for), but he had been in the ER until 4 a.m. the
night before. So – even though I only had two hours of sleep myself, I ventured
out. I got lost more than five times. Joggers, dog-walkers, teenagers with cell
phones, a police department, and a doctor’s office had to help me arrive on
time. I made it, but what an experience! I told most of those helpers that I would
thank them one day. So – here it is – to the folks in Orange County in the fall
of 2014 who led me to my editor, thank you! [GPS annoys me – if you were
wondering why I don’t use that.]
·Driving: It’s still quite amazing to me that I
drove MANY years with an undiagnosed brain tumor. Think about how many
accidents I could have caused but didn’t! I drove my “Mickey Mobile” (a
yellow Saturn purchased because of its color, to match Mickey Mouse’s feet)
when the tumor was growing larger and larger. I became so attached to this car
that I drove it until it literally died in a busy intersection on a bustling
Friday afternoon.I cried when the mechanic
said he wouldn’t take my money to fix it one more time. The tears were because
I knew my Mickey Mobile “took care of me,” when I now realize that I should not
have been driving! The only accidents I ever had was when I backed up three
different times and I tore the right mirror off the car. One boyfriend (Jim)
fixed it the first time, and then the next boyfriend (Aiden) fixed it the
second and the third. Describing the time spent in my car reminds me that I
bought the car in 2000 (before I even met Jim). I had that Saturn for 15 years,
longer than all of my romantic relationships! I owned a Saturn long after that
company folded. I know that I’m still lousy with directions, but when I drove
the Mickey Mobile while I had the tumor, I was SO confused that people had to
lead me out of new locations so I could get to a main road. That gradually
helped me navigate many small trips I took for birthday parties, housewarmings,
baby showers, etc. Because the Mickey Mobile was so recognizable, being
bright yellow, I ruined a couple of surprise parties because as soon as the
special guest arrived at his or her party, he or she knew something was up once
seeing my unusual car in the parking lot. (Nowadays, there are more yellow cars
on the road than there were back then.) After those ruined surprises happened a
couple of times, I began to park it in the back of establishments and walked
through back entrances so no more party planners could be upset with me for
ruining their hard work at providing the surprise. So, R.I.P., my Mickey
(218,000 miles) Mobile. Thank you for keeping me safe all of those years when I
drove, though some days I had no idea where I was, due to the tumor. I know God
was in the passenger seat all along….
drop things repeatedly. Sometimes, this can be really messy! Once, before I
knew this would become an everyday occurrence, I dropped a full cup of soda in
a computer store. The staff was pretty upset. When I had just picked up my
new-for-me (i.e., used) Subaru, I spilled a container of milk in it. Ugh!
Drinks and so much more get dropped by me daily. As I wrote this, I stopped
counting at 10 dropped items for just today.
·Catastrophizing: I make most
things bigger than they actually are. I create a “bigger picture” of something
than is actually taking place. I learned this word at one of my brain-injury
support group meetings.
·No filter: I don’t “watch”
what I’m saying in certain situations. Once, at a church’s clothing giveaway, I
was talking about my boobs. I embarrassed some of the church ladies around me.
Some things are better left unsaid. Many people have told me, “You’ve lost your
·Naps/rest: I need to “turn
off my brain” at least once each day. At the beginning (meaning right after my
surgery), I needed two-to-three-hour naps daily. Now, 30-60 minutes is enough
to recharge. On a very busy day, when I skip this, I “pay for it” later with bad
behavior noticed by others. My absolute best “thinking time” is early in the
morning. Before my brain tumor, I used to take naps every once in a while.
Nowadays, they are absolutely necessary in order for me to decompress. I’m an
early-riser (5:30-6:00 a.m.) and get most of my “thinking activities,” such as
banking, calls, chores, etc., done in the morning. By afternoon, my
brain needs recharging. These naps are the ticket to being able to do anything
in the evening. On the days I miss one, I’m in bed by 8-8:30 p.m. Even on the
days I have a nap, I’m still turning off the lights and heading to bed around
9-9:30 p.m. This seems very early to others who like to make late evening phone
calls. But, for me, it’s necessary so I can accomplish anything the next day,
especially since I often get up for an hour or two in the middle of the night,
due to restlessness, stress, and over-thinking. [Naps and/or rests are needed
by a majority in the groups.]
·Dizziness: If I close my
eyes for too long (like at a prayer time in church), I feel wibbly-wobbly. I
have to remember to pray with my eyes open or I feel like I’m being moved.
Washing my hair in the shower has led to many falls into the wall since I have
to shut my eyes. I can also feel dizzy in an over-stimulated environment like a
·Misplacements: I continually put
items away in incorrect places. I’ve found my hairbrush in my toothbrush holder
(and then vice versa). This makes me miss my Grandma Johnson, because I
remember a story my dad used to tell us about how his mother accidentally put a
loaf of bread under his bed, so he thought about this and went and found his
sneakers in the breadbox. I’ve often found things I thought were long gone.
·Write incorrectly: When I’m
scribbling down directions to something, I write what pops into my head
sometimes instead of what I was told. So – if a doctor’s practice is at more
than one location, I’ve gone to the wrong one and then have had to get back in
my car to drive to the right spot. This is unnerving if it makes me late. I’ve
written down someone’s address incorrectly numerous times also.
·Sign-checker: I’m constantly
reading signs as I drive or as I’m driven places. Once, when our church sign
announcing our start time of 9:30 a.m. was changed to 9:25, I was obsessed with
finding out why. The secretary, Julie, told me no one else had mentioned it. I
wondered if anyone else even noticed it. But of course, I did, and then I
talked about it with lots of folks, including the man who changed it. I’ve
noticed misspellings on LOTS of signs. (For example, “meader” for “meter,” “Veterns”
for “Veterans” – on a school sign! Happy “Valentin’s” Day for “Valentine’s,” “Wensday”
for “Wednesday,” and, oh, so much more!)
·Flooded: There are times
when my brain becomes so overloaded with information, I literally have to sit
down in a quiet place and “shut down.” I’ve done this at church in a nursery
room with a calming rocking chair (when the room is empty). I learned at a
support group for brain injury that this is called being “flooded.”
Things no one else notices (like someone spelling their own first name
incorrectly on an email), I notice. I’m super-aware of way too much unimportant
·Food sensations: Certain foods really hurt my head
when I eat them. I have to chew popcorn on the right side of my mouth, because
chewing it on the left side (where the tumor was) is so loud, it hurts! The
same is true with potato chips or any really crunchy food. Hot tea or an
ice-cold soda sends a sharp wave of pain up the left side of my face, and it
actually stings. I literally can feel it for seconds.
·Aphasia: A loss or impairment of language,
affecting speech, reading, and/or writing, resulting from brain damage. I often
say the wrong word with the same first letter. When I was in the early stages
of recovery, I didn’t notice the mistakes I made. Others had to say, “What does
that mean?” when I said the wrong word. But, now, I do notice and once in a
while – it’s funny. One day as I volunteered at my church with a small group of
four-year-olds, a little girl came up to show me a cut on her finger. I
incorrectly said to her, “Do you need a Band-Aid for that BOOBIE?” (I meant to
say, “BOO-BOO.”) Her retort was priceless! “I’m only four years old. I don’t
have boobies yet.” I laughed and went to tell the pastor my mistake. Her mother
thought the whole thing was cute. Another humorous
example is: once, when I was volunteering to park cars at a stadium while there
was a DRUM and bugle corps competition going on, two police officers pulled into the parking lot. I
leaned into their police car's window and asked, “Are you here for the DRUGS
and bugles?” Both officers chuckled as I explained that I meant to say “drums.”
One of the officers asked, “Are there drugs here today?” I smiled, and I have
told that story a million times since. There are other times since then
that my incorrect words are very embarrassing. Once, I called a restaurant “Two
Butts” instead of “Two Boots,” when I spoke about it to a group of people.
Another time, when I was explaining to a group of friends what I didn’t like
about someone, I said, “despise” instead of “dislike.” They all were upset with
me before I could explain that I had used the wrong word. Cut me some slack,
girls, please!Since my brain injury, I’m not
always able to think of the correct word when I am speaking. People love to “fill-in-the-blank”
for me, which can really be annoying, since what they state may or may not be
what I’m trying to express. This causes lots of confusion in social settings!
Please, folks, let us with brain injuries speak for ourselves, even if that
means you have to be more patient with us as we struggle to say just the right
word. And I’m not the only one with aphasia. My friend Jeanne, who is not
brain-injured and is mentioned here in other places, was in charge of a women’s
church fundraiser. When she was auctioning off “Santa’s Lucky Tin,” she said, “Satan’s.”
Everyone cracked up, including me, because I knew I’d be adding it here. It’s
reassuring when others who do not have a brain injury say the wrong words, too!
[Many in the support groups reported this as a problem.]
·Overly-talkative: As my mother has told me many
times, I “came out talking,” but now, I talk even more in almost every
situation. This gets really annoying for most people involved in my life. They
don’t understand that my brain injury makes it hard for me to control this. Also,
I’ve witnessed first-hand the over-talking done by others with brain injuries. [But,
a funny story is this one: recently, I was VERY nervous about volunteering to teach
preschoolers for the first time at my church. As I began to teach a lesson
about how God loves us and sent His Son, four-year-old Jack blurted out, “You
use too many words. Talk less!” I cracked up laughing and knew that this was a
present from God, to reduce my nervousness. There are MANY people that wish
they had the courage Jack had to tell me that. “Out of the mouths of babes….”]
·Violent: This is an
extremely difficult one to not only admit to, but also have to write about. The
reason I chose to include it (vs. covering it up by not listing it here), is
because I really do want to help other families who are dealing with their own
personal brain-injury stories. So – here goes: I’ve thrown and broken many
items including: cell phones, a computer, glasses with liquids in them, TV
remotes, and on and on. I don’t handle what others email or text very well
sometimes. My anger level gets so hot over the least little thing and/or the
big things that take place in life. I’ve smashed a window, grabbed keys out of
a moving car, and caused other dangerous escapades. Luckily, I’ve never hurt
myself or anyone else in my path, but that behavior is still so wrong. As I’ve
stated here already, many of my former students didn’t behave this
uncontrollably. And, I’m very proud to state that these violent outbursts have
ceased. I pray to God each night at bedtime to thank Him for none that day, and
for no more tomorrow. I’ve never been aggressive with children around. They
keep me calm all the time. Only adults “push my buttons.” [I was reluctant to
ask about this in the support groups, but suffice it to say, I witnessed it on
more than one occasion at the various meetings I attended.]
·Overly-generous: This may seem
like a good thing (giving to others less fortunate), but as I stated here about
my difficulties with managing money, this is one of the reasons why, for a long
time after my surgery, I handed $20 bills to numerous “homeless” people I saw.
Turns out, some of them weren’t actually homeless. I’ve purchased expensive
presents for someone when spending a lot was unnecessary. I used to pay for a
$6 lunch voluntary-donation meal with a $20 bill and donated all the rest. I
could list more and more examples of this, but it’s very hard to write about
because it’s one of the reasons I have very little savings anymore. I even had
to see someone to help me learn how to be better with money.Though I’ve curbed this one a lot, I still
need to improve. We’ll see….
I never really liked these trips to have teeth work done (does anyone?), but
now they are extremely frightening. I have become so scared and uncomfortable
there, I’ve pushed that metal tray and knocked things over. Again, this
childlike behavior is difficult to understand, but I do know that when anyone
works on the left side of my mouth (the side where the tumor was and where
anesthesia left part of my upper lip numb permanently), I am in a lot of mouth
pain, and the noise in my head is excruciating. If the staff is “warm and fuzzy”
with me, I do better. When anyone there is gruff, I’m gruffer. I used to take
anti-anxiety meds before I went so there were no more dental tools flying.
Aiden used to drive me to and from all dentist appointments. Now, I drive
myself, so no meds can be taken.
·Coping mechanisms: Due to all of the
things I’ve listed here, I have a very difficult time coping with my life as it
is now. I have an extremely hard time laughing things off or dismissing things
so they don’t fester too long in my head. Things that I used to be good at, I
struggle with daily, and that makes the journey of life pretty hard most of the
time. I’ve aged cognitively prematurely and lost many of my former abilities.
·Teasing: I do not enjoy anyone
teasing me anymore. I used to be able to decipher someone’s words better,
before my brain injury. Nowadays, I’m never really sure what someone is “getting
at,” since I am very literal. Someone might say something that’s meant in jest,
but I take it personally and then go over and over it my head silently hours
later. I also don’t care for it when people state, “I’m just kidding you,” when
really they are teasing but trying to make it sound “better.” Once, when I was
in a group setting, a professional who should have known better told others not
to sit near me because “Janet’s trouble.” I can’t express enough how teasing
does not make the other person feel good. I cried when I went home, even though
it was probably meant to be funny. [And, this is bothersome to the majority I
polled in my support groups.]
·Arrivals/Departures: It seems like in
this too-fast world we now live in, practically everyone wants something done
immediately. This is very difficult sometimes if you’ve experienced a brain
injury. I need time to get “settled in” in a setting outside of my own home. I
don’t need to hear things like “she’s here – everyone sit at the table for
soup,” when I arrive for a holiday meal EARLY and haven’t even put my purse or
bag down – or even taken off my coat! This actually did happen and that
triggered me to be rude to that hostess when I spoke to her nephew about her,
which was inappropriate on my part, but it was because I felt she had rudely
dealt with me, as so many people do when they don’t have the patience to wait. All of this applies to
departures as well. I need to gather my belongings in silence so I don’t forget
anything. When someone wanted to talk to me when it was convenient for them
only, I’ve often left my jacket, purse, etc., behind and then have had to
travel back to the setting to, hopefully, find what I forgot. Luckily, nothing
has ever been taken/stolen from me. I need the quiet space to pack up.
always used to have piles of things, both at home and in my classrooms. But,
since my brain injury, I clutter more now. Part of that is because of this
book: there’s references, books, scribbled chapters, and oh, so much more all over
the place. But, some of the clutter is not related at all to the book. As I
heard at one of my support groups, we, the brain-injured, hold onto more since
we’ve lost so much. Hearing that helped me because I felt relief that it’s not
just me. Many of the items in the clutter are there to remind me of something I
don’t want to forget.
·Numbers: I hit the wrong
phone numbers and push the wrong buttons on my calculator. This had led to
calls to the wrong people and incorrect banking.
·Note-taking: So, I’m going to
end this chapter where it began. I have so many notebooks in so many shapes and
sizes, I’m lucky I remember where I keep them all. But, this habit has helped
me so many times since my brain injury, because they “represent” my memory. I
can “look something up” when I need to remember important information. I record
daily to-do lists, and this is one of the ways that I arrive at the places I do
on the correct dates. It’s also the way I get everyday chores completed.
Something as simple as remembering to brush my dog’s teeth each day (to help
with tartar buildup), has to be written down; otherwise, I forget to do it. I
put hours and hours into prepping for each day. The only thing I always
remember to do, without a reminder, is to pray to God.
– I have to learn new skills to deal with my damaged brain, as do all the other
brain-injured folks. Others in our lives have to learn how to tolerate our
various behavioral changes.
list was MY list. I’m quite sure each person who has experienced a brain injury
has some things to add or delete from it. I know that we all need way more
patience from the people in our lives that care for us. Remember – it’s hard
for us to navigate the changes. It is harder if we’re not met with loving
kindness from our loved ones.
quote I borrowed from one of my favorite TV shows, NBC’s Chicago Med, stated, “Why is it brain injuries are never like you
read in the textbooks?” How true! That’s why this book was needed to be written
by someone who’s experienced it, not by someone who’s only come in contact with
also stated on that TV show, and confirmed by my doctors, the frontal lobe
controls behavior and judgment. Since my damage is there, that’s the reason for
some things listed here. I know that sometimes I am overbearing to be around.
But, I do have a warm heart that truly wants to get better and behave more
appropriately. I just pray that happens sooner than later. Writing this book
has helped me somewhat with that because I’ve seen how far I’ve actually come.
need it noted here that I diligently wrote this section of this chapter with a
gash in my head after I bumped into an electric meter. I was in pain, but still
did my “homework” for my editor.]
Also – some of the items on this list took
place before my brain injury, but now they are exacerbated. Though the brain
tumor caused the obsessive-compulsive disorder behavior of mysophobia, and the
surgery to remove the tumor also took away my unusual fear of germs, what has
lasted is some OCD behaviors, as I’m sure you could figure out from this list.
But, as always, I’ll be eternally grateful to God that I’m here to tell the
For the coming year, I [Douglas Winslow Cooper] will be
excerpting, weekly, material from this almost-final version of the fine book by Janet Johnson Schliff, M.S. Ed., which she wrote over a three-year period with some coaching and editing help from me, through my business, Write Your Book with Me.
Janet Johnson Schliff was on WKNY Radio 1490 at 9:10 a.m. on Thursday, March 1, Kingston, NY.
Janet spoke at 1 p.m. on Saturday, March 3 at Barnes & Noble in Kingston, NY. I [DWC] attended, along with about 40 other people. Congratulations to Janet on a fine talk! Janet Johnson Schliff spoke at the Starr Library in Rhinebeck, NY, at 7 p.m. on March 6.
She spoke at the Golden Notebook Bookstore in Woodstock, NY, at 2 p.m. on March 17.
She spoke at the Morton Library in Rhinecliff, NY, at 6:30 p.m. on March 28.
She spoke at RCAL in Kingston, NY, at 4 p.m. on April 3. I was able to attend. They gave her an impromptu book-launch party.
On 4/4/18 Janet spoke at the Parkinson's Support Group at the Starr Library at Rhinebeck at 2:30 p.m.
On 4/27/18 Janet spoke at the Stone Ridge Library at 5:30 p.m.
On 5/4/18 Janet spoke at the Hurley Library at 6 p.m.
On 5/9/18 Janet spoke at the Kingston Library at 6 p.m.
On 5/14/18 Janet spoke at the Staatsburg Library at 7 p.m.
On 5/31/18 Janet spoke at the Clinton Community Library at 6:30 p.m.
On 6/9/18 Janet spoke at the Tannersville Mountain Top Library at noon.
On 6/11/18 Janet spoke at the Gardiner Library at 7 p.m.
On 6/20/18 Janet will be at the Marbletown Community Center at 6 p.m.
On 7/13/18 Janet will be at the Esopus Library at 7 p.m.
On 7/20/18 Janet will be at the Pine Plains Library at 6 p.m.
On 7/23/18 Janet will be at the Ulster Library at 5:30 p.m.
On 9/06/18 Janet will be at the Inquiring Minds Bookstore in New Paltz at 7 p.m.
On 9/22/18 Janet will again be at the Tannersville Mountain Top Library, at noon.
More signings will be coming up. A fine feature about Janet by John DeSantos [845 LIFE] appeared in the Middletown Times Herald-Record on Monday, March 12, as part of Brain Injury Awareness Month. An article about her book was just published in the May 2018 Living Rhinebeck Magazine. An article about her book appeared in the May 14 Daily Freeman of Kingston, NY. and another in the Family Life section of the Poughkeepsie Journal on June 8th.