There are SO many things that take place each day that trigger me. This
could actually be the largest chapter in this book. But – to save time (and to
keep the chapters as brief as possible since that’s how I now read best,
another symptom of brain injury), I’ll share only some of my “favorites.” The
following list is what has upset me the most when others have dealt with me
post-brain injury.
Some folks I write about here are total strangers, but the sadder part
is that many of these examples are by people who should know better, since they
know I have permanent brain damage.
The first example I’m presenting happened Christmastime 2015. The person
who triggers me practically every time he speaks to me will remain nameless,
but my editor’s name for him is “Trigger.” Suffice it to say, that in his
position, he should know better. I think he actually thinks he’s being funny
when he teases me. But what I think is that he should respond more
appropriately because of being informed by a letter from my doctor about how to
handle me best.
He thinks it’s funny to tell me to go write something down in my
notebook, though it’s been explained that my notetaking is the way I process
information. Others who overhear him teasing me tell me it is the devil who’s
playing with my brain (i.e., letting this person “get” to me). Whether
it is the devil or not, any person in a leadership position should never
purposefully make someone feel awkward. I will take notes forever so I can
remember the day’s events. It’s not a joking matter.
In the book Where is the Mango Princess? A Journey Back
from Brain Injury, by Cathy Crimmins, such note-taking is titled a “compensatory
strategy” which, for her husband after his brain injury, was an appointment
book and “to do” lists. All of these I use diligently to make sense of my life.
[I’ve listed MANY helpful quotes from this book in my recommended readings
chapter at the end of my book; please check them out; her book is excellent.]
Another trigger for me is when Trigger teases me about other things.
Once when he was trying to line up a table in the middle of a large room,
instead of just asking me to help him, he said “Oh – you’re the perfect person
for this job because you like everything perfectly even!” Now – some people
would be able to react on an even keel to that sentence. I, on the other hand,
am way-too-sensitive since my brain injury, and what I actually hear is him
pointing out how annoying my personality is….
Once when I was looking for someone at this location, the same leader
said, “He is hiding from you” (and then he giggled). Again – that irritated me,
because I interpreted that to mean that other person wanted to get away from
me. Remember, this leader was filled in on how to speak carefully to me. He’s
book-smart, but he lacks the skills to take care of others who need his help
the most.
I’ve lost sleep
over the decision to include these examples here for others to read, because
some folks in my life who have listened to me report my feelings after these
episodes will know who I am referring to here (though I never stated his name
or job title). That may not sit well with them, but I obviously decided that
was okay because the reason I’m writing this book is to help others take better
care of the brain-injured.
So, please, stop
teasing, kidding, giggling, etc., at someone who has a hard time accepting
those behaviors. Show compassion, love, and warmth. That’s what God has
instructed us all to do. Remember a brain injury is not always easily recognizable.
As one of my
doctors stated, “It’s a shame that you go to that place for support and this is
what you get.”
Another public place where I am often triggered is restaurants. For some
unexplainable reason, I have EXCELLENT hearing nowadays. Unfortunately, that
means I overhear things I truly wish I had not.
One thing that far too many people do that really grosses me out is when
we’re all seated near one another eating our various menu selections at a
restaurant, diner, or even fast-food place, certain families find it acceptable
to discuss disgusting subjects such as “Aunt Mary’s surgery” with all the
blood, guts, and gory details, as I’m trying to enjoy my forkful. I would “love”
to join in their conversation and tell them they’re not in their own kitchen or
dining room, so could they please stop discussing bodily functions while the
rest of us are trying to enjoy our meal. But, I don’t say anything, and then I
just get angrier and angrier. I’ve stormed off to the restroom many times so I don’t
create a scene for all of the people there – many of whom are oblivious to
what’s going on. I just wish others would think of others instead of just
themselves…. [Ironically – as I was writing about this trigger, a group of my
own friends did this about someone’s hospital stay. I rudely interrupted my
friend who was speaking and asked her to stop. When I explained why, another
friend at our table said no one could hear us. I vehemently disagreed. Please
stop talking about medical issues when people are eating!]
Another conversation I overheard at a restaurant was about a suicide.
This family had gone out to eat to discuss what had recently taken place in
their family. Of course, this conversation shouldn’t have been listened to by
anyone else, so I asked the hostess if Aiden and I could move to another table
in the back so that they would have their privacy.
None of my doctors have been able to explain, to my understanding, why
my hearing is so pronounced since the surgery. All I do know is that I’ve
definitely heard things that others would wish I hadn’t. And then, there are
folks who say mean things about me since my brain surgery who don’t care if I
hear it or not. Once, I heard a lawyer
call me a “wacko” at someone else’s court appearance. This tortured me for days
and days! This superb hearing has only been the case since my brain surgery.
(My editor and I discussed the possibility that it is not hearing, but
attention, which has changed.)
To digress for a moment, one time my excellent hearing actually helped a
feuding couple. I was out celebrating a friend’s birthday at a very noisy
restaurant. A few booths away from our large table, a couple was arguing about
menu selections at Panera Bread (where she wanted to go for lunch the next
day). I heard her stating what she wanted to order at Panera Bread the
following day, and I heard his emphatic retorts about how wrong she was, and
that that place did not serve that particular item. I knew she was correct,
because I had eaten there earlier that same day.
Instead of minding my own business, I left my table, walked a few tables
away to this couple’s booth and said that I couldn’t help but overhear their
conversation about Panera Bread’s menu. I told the man his wife was correct,
and she smiled at me and said, “Thank you very much.”
After the husband stopped staring at me (probably because who does that:
walk up to strangers and interrupt their discussion?), the two of them stopped
fighting, giggled at my bizarre behavior, and as I watched them for the rest of
their time there, they enjoyed talking. So – sometimes my good hearing is
helpful.
But, now let’s get back to what triggers me….
Back to that place
where I’m supposed to go to feel better, I actually get teased by others, too,
though I’ve been frequently verbal about my brain injury and my inability to
deal well with teasing. These are just some of the sentences that others there have
said to me [I’ve explained what some of these were in reference to. Some do not
need an explanation. I’m sure you can figure out why they bothered me]:
· “Aren’t you
embarrassed by how many Mickey Mouses you own?”
· “You should use
your brain.”
· “You have too much
stuff.”
· “Why do you carry
all those bags?”
· “Where’s your
baggage?” [She’s mocking me for often bringing bags of stuff for kids there.
The same person told me to go back to my car to get my bags when she saw me
empty-handed. I told her they were inside already. She giggled at her teasing.
I fumed, since in those bags I carry toys for little ones.]
· “Let’s have Janet
be our union organizer.” [When some of us were told that some volunteers are
actually paid for what they do. This woman who said that thinks she’s being
funny, but I don’t. I’m no one’s boss and teasing me about that hurts. Remember
– I used to have one to six teacher assistants and/or aides in my classrooms,
so I USED to be in charge. Now all I get to do is volunteer. I do miss the responsibility
of leadership. I love being with the children.
Children are my favorite people. Some of the adults, though, really get
under my skin….]
In other settings
where I think I should be loved unconditionally, or, at the very least, be
understood, I still have to make my way through hurtful comments. Here’s a
small sample of some of those:
· “Let me see if you
have a screw loose.”
· “You’re so very
busy that you can’t pick up the phone?”
· “You put baked
goods in your Mickey Mouse container to make it look like you baked?” [No – I
go to bake sales, wait on lines, spend my money and then bring the goodies to
this meeting for us all to enjoy. I’m very candid that I don’t bake. Why can’t
you just be grateful?]
· “Sarcasm isn’t
necessary.” [This was her response when I was asking a texted question when I
didn’t understand her words. This should have been my final text, since I threw
my cell phone, broke it one more time, and then the doctors told me no more
texting after I fixed my cell phone].
· “You should be happy
to be alive. Why do you get so upset over the littlest thing?” [Would you ask
someone in a wheelchair a question like that? We all have some different
burdens to carry.]
· “You don’t know
how to use your own camera?” [I have a hard time remembering instructions.]
· “I thought you
were on a diet.” [I was buying a cupcake, and a woman on the line overheard the
person in my life who said that to me, and this stranger retorted, “How rude!”
Thank you, lady-who-likes-cupcakes!]
· “Not all of us
celebrate birthdays.” [I wished “Susan” a happy birthday, since the next day it
was Susan’s and no one in Susan’s family mentioned it, and so someone else from
that family had to point their non-celebrating of birthdays out to me.
Ironically, the next day, the person who was quoted here, “Sally,” asked her
relatives for a purse for her birthday. So much for Sally’s “theory” that they
don’t celebrate birthdays, huh?]
· “You don’t sound
brain-injured.” [Said by someone reluctant to accommodate my needs.]
· “You wear baggy
pants.”
· “That’s
ridiculous.” [I was scared to pick up a dead mouse on the floor of the church I
visited for a workshop.]
· “I wish I had meds
to help me like that.” [I don’t appreciate someone laughing off my need for a
controlled substance. I’m not proud when I have to take these meds to help me
stay calm. I know tons of people who do calm themselves without needing help
from a pill. God and I talk about this every time I go to swallow one. I pray
for the day that I will have “thicker skin” and don’t get so hurt by the
thoughtlessness of others….]
· “Your Mickey Mouse
clothes are strange.”
· “You dominated the
last meeting.” [The saddest part about this sentence is that it was stated at a
support group. I didn’t remember talking too much at our last meeting, but, in
her opinion, I did. I was mortified when it was pointed out this way. For the
rest of this meeting, I only spoke when spoken to. I took a break from that
group, so I could re-group.]
· “The last time I
saw you, we talked about that. Why don’t you remember?” [Because I have memory
problems! Why don’t YOU remember that?!]
· “I’m just kidding
with you.” [Usually – that’s a masked expression for teasing.]
· “You are too young
to wear a bib.” [I have bibs at my house, had one at Aiden’s house, and in our
cars. In restaurants, I use a napkin tucked into my shirt. All of this is
because half of my upper lip has no sensation in it whatsoever since the brain
surgery. I dribble food and drinks each time I eat, so I use the bibs now
because I always got stains on my clothes. When I’m spoken to this way, I’d
love to ask that person if they’ve ever had anesthesia do damage to their lip!
I assume they say it because some elderly people use bibs???]
· “You’re
over-reactive.” [Yes – I am, but since you’ve been told that by my doctor and
me several times, you really don’t need to point it out one more time. I got
it!]
· “You’re here for
the food? I thought you were dieting.” [By the way – staring at desserts
doesn’t make you a cheater on your diet.]
· “Aren’t you almost
done with that book?” [Said to me teasingly only eight months after I began
writing. Have you ever written a book? It takes a lot of time!]
· “Your dog is a
real pain.” [No – you are. My dog is my lifeline!]
· “I don’t know if
you are capable of learning.”
I’ve
heard of the following words being insensitively said to other brain-injured
people’s families. I believe these are very rude:
· “Your daughter
can’t think.” [Yes, she can!]
· “Your husband is
I.P.” [“I.P.” stood for “incapacitated person,” which is not true!]
And here are some
more things that also bother me:
· Various songs on
the radio. [They bring me back to a place and time that wasn’t good. For
example – there is a group called “One Direction” that my niece G. loved. Any
time their song, “The Story of My Life,” comes on, I weep. It’s a beautiful
song that reminds me of what I don’t have – a relationship with either of my nieces….]
· Running over an
animal when driving, a bird flying into the windshield when someone else is
driving, stepping on a worm…. [I am hyper-sensitive around all living creatures
now. I’m not saying I didn’t care about these situations before, but nowadays,
I cry out loud if I run over a squirrel or a bird hit Aiden’s windshield when
he drove, or I step on a worm while I’m walking my dog, Happy. All of these
examples are natural parts of life, but since my brain was injured, these
situations take on a whole new category of things that are “odd” about me.]
· The behavior of
others gets under my skin way too easily. I wish there were a “pill” to grow
thicker skin. But, in the meantime, I have to learn to ignore: the folks
stealing sugar packets galore (bag loads) from my coffee stop; some workers at
grocery store registers who talk so fast about my bill and then get annoyed
with me when I can’t answer them right away; people who enjoy playing board
games, invite me to join in, and then get annoyed with me when their chosen
game triggers my emotions (since some board games use vocabulary that unsettles
me too easily, but I try to play along because I want to be around others); the
rude, fresh words of others way too often; people who allow their cell phones’
ring tones to disturb others nearby anywhere out in public; staff at some
doctors’ offices who clearly could not care less about the feelings of their
patients and are just there for a paycheck….
Once, a woman who
turned her cell phone on more than once in a movie theater was asked (politely)
by Aiden to please turn it off when she did it the second time (he ignored it
the first time). She did, but then used it one more time anyway. After the
movie ended, I heard her call Aiden an “idiot” when she was telling her movie
companion that she only had it on for a few seconds (no –it was on longer than
that.)
I flipped out! I
can’t stand people who break the rules and then blame the person who called
them on it. She kept saying to me, “I’ll pray for you,” sarcastically, as I
told her off.
No honey, I’ll
pray for you that you learn how to behave better.
I had heard of
adult bullies before, but this incident reminds me of name-callers on the
playground years ago. She was confronted and then turned on the person who did
nothing wrong. Sad.
How about when you
go to the movies you “leave the world behind” and turn off your cells, so we
can all enjoy our few hours away from it all?
At another time,
on Christmas Day of 2016, I went to church very early to set up a table with
crayons and coloring sheets for the little ones so they would have something to
do during the service since their class was cancelled due to the holiday.
After I did that,
I was about to set up the sometimes-weekly donation I bring of goodies to eat
after church. Because it was Christmas Day, I brought a bit more for the folks
to munch on after the service (peppermint Oreos, mini candy canes, and bake
sale cookies.)
As I was about to
unload it all, I noticed the coffee wasn’t being set up as it usually is. So, I
asked a greeter if we were having our Community Fellowship Hour (as it was
written in the bulletin).
Her response was
with an unfriendly tone of voice: “No! It’s Christmas.”
I said, “I know,
and that’s why I really thought we’d have it. That’s why I am different than
others,” something I’d rather not have others point out.
She then said a
sentence that rocked me to the core, to the point that I had to take meds
before church even began. Her words made me feel really lonely. “You’re single.
These families here have to hurry out of here to celebrate with their families.”
That was an
upsetting thing to point out. I KNOW I’m not married. I KNOW I don’t have
children or grandchildren. I KNOW my family lives in Florida and they probably
won’t be calling me today like they haven’t for other Christmases. I DON’T need
it pointed out just because I asked a simple coffee question.
Words can really
hurt, can’t they?
Friends at church
came to my aid. One offered to drive me home. Others sat with me and let me
vent so I could focus on the music and sermon.
[By the way, people DID linger the usual
amount of time after that Christmas morning service, 20-25 minutes, and ALL the
cookies and candy canes were eaten except one!]
This list could go
on and on for a very long time. I’m quite sure that I trigger others, as well.
What one doctor has told me to do (which I’m still working on) is: when I’m
triggered, either leave the situation or shut up. I actually have a sign on the
back of my front door that reads, “Shut up!” I look at it each time I exit. I
hope someday reading it actually works for me….
And some people
can be kinder towards me. A woman at my condo said, “You get a free pass for
not getting everything right.” Amen!
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.
###
BOOK TALKS AND SIGNINGS
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.
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 6/11/18 Janet spoke at the Gardiner Library at 7 p.m.
On 6/20/18 Janet spoke at the Marbletown Community Center at 6 p.m.
On 7/13/18 Janet spoke at the Esopus Library at 7 p.m.
On 7/20/18 Janet spoke at the Pine Plains Library at 6 p.m.
On 7/20/18 Janet spoke at the Pine Plains Library at 6 p.m.
On 7/23/18 Janet spoke at the Ulster Library at 5:30 p.m.
On 8/11/18 Janet spoke at the Northern Dutchess Bible Church in Red Hook at 1:00 p.m.
On 9/15/18 Janet will be at the Adriance Library in Poughkeepsie (93 Market St.) at 2:30 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. The Millerton News published an article on Thursday, August 2, about her talk at the Pine Plains Library.
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