Friday, June 8, 2018

WHAT EVER HAPPENED...? "A Brain Injury List"


          Brain 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) ….

          As a 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 discussed again.

          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 notes.

          I 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.

          This 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.

          But, 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, too.

          This 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?”

          That 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.”

          Barbara's 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….

If you’re 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.”

          That's 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.

          The 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….

Some people with brain injuries may look normal, with excellent vocabularies, but you don’t know what is bubbling right under the surface.

          I 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!

          I've 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 me.
What’s truly 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.

The “non-traumatic” 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 idea….

·       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 did, too.]

·       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.]

·       Sensitivity: This 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: 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 improvement.

·       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 also.

·       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 groups.]

·       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….

·       Dropsies: I 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 filter!”

·       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 crowded mall.

·       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.”

·       Heightened awareness: 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 information.

·       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….

·       Dentist appointments: 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.

·       Clutter: I 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.
     So – 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.
     This 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.     

     A 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 it.

     As 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.
     [I 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 story….

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.

Her memoir is now available in paperback and ebook formats from Outskirts Press  and



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.

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