My latest BIM

I was so proud of myself yesterday because I actually cooked my own dinner. I made a frittata with spinach and cheese. I know how easy it is for me to forget what I am doing so I set a timer. Unfortunately, when the timer went off I went to the kitchen to find the pan filled with raw egg and cold spinach sitting on top of the stove. I forgot to PUT IT IN the oven.

Taking it in stride, laughing at myself, at least today.

Back from vacation!

I wish I could say my mind was rested. My body is. I exercised. I stuck to my diet, at least until the last two days. I read a lot. I got along great with my SO. But, I had nightmares. Kicking, screaming, crying in my sleep nightmares. I told everyone we met that I was a retired teacher. That was so much easier than saying a teacher on disability. I would not know how to begin to explain to a stranger that I was on disability. I know I do not have to explain but I am basically lying. Why would I retire? I loved my job. I still wish I could do it. I have to begin to accept that I cannot. I still feel so much anger towards the people who stopped me, even though they did not stop me.

It was my brain injury that stopped me. The only thing the people I keep blaming did was make me see that I could not teach and even now, I refuse to see it. I would rather focus my rage on them than accept where I am. Why is it so difficult to admit my own limitations? Why is it easier to make it seem like these limitations were imposed on me by others? I struggled and fought and failed and suffered trying to teach for four years after my surgery. Yes, I made a huge difference for some children. Yes, I contributed to the education of some students. Yes, there were some parents who were very grateful for what I did for some students. As a teacher, I was supposed to be able to teach many children. In previous years, I was able to teach over one hundred children in a year. I was able to collaborate with colleagues and contribute to the growth of the school. I was able to mentor new teachers, speak eloquently at parent forums, inspire minds, advocate effectively, and so on. Such is the life, the job, the expectation of a teacher. The thing is I was really good at it so when I was injured everyone just expected me to continue doing it but just not as well.

My doctors, my family, my boss, everyone just said that it was fine to just be an okay teacher. Just phone it in. Do the job and then go home. You don't have to be fantastic at it anymore. Just do the minimum and even then you will probably do a good job. A good enough job. Just say yes to whatever you are asked to do. Just agree with what you are told. Follow the plan. Stick to the basics. Go along with the crowd. It sounds so easy, doesn't it? I just couldn't do it. It was not because I am stubborn or defiant or a perfectionist. It is not because I wanted to fail or lose my job. It is not because I am in denial about my injury. It is not because I did not have help. I just could not do it. I tried really hard. No one can say I did not try. I gave up piece after piece of my job to make it easier to do the minimum. I relinquished control, I took on less, I rested, I accepted accommodations, I demanded even more accommodations but I still could not do it. It seems counter-intuitive that if I was a great teacher, I could not be a good enough teacher.

Maybe only another teacher can understand how incredibly complicated a job it is. Perhaps, there is no such thing as a good enough teacher. Every teacher is a great teacher. It is just that kind of job. It demands every ounce of your energy and every cell in your body. It demands all of your patience, compassion, intuition, creativity, ability and strength to go on every day. People envy the vacations a teacher gets but it is hard to imagine how essential they are and how often they are not enough to fully recharge the batteries.

I am not the same person I used to be. I need to begin to mourn the loss of that individual. Right now I know that it is important for me to let go and be sad. I will try to be respectful of those who tell me to be grateful for all that I still have but I know this is a period of intense letting go. It is going to be hard work and it is going to be painful but i have to mourn before I can move on. Please let me do that. Please help me to be sad, to bury what once was, to cry over what I lost. It is okay. I will emerge a stronger person after this. I promise. What was killing me last year, what I could not handle, was trying to be something I am not. I will be okay. I do not know when and I do not know how but I know I have to cry right now if I am going to smile some day.

What are you doing?

What a disaster! So much drama!

This morning at 8 AM I employed this excellent system to keep me on track. Excellent until the next BIM gets me into trouble or even worse.

My post-it said "clearing the floor" and my timer ran for 20 minutes. I got distracted at times but kept seeing that sign and that timer and getting back on task. Then I wrote "clearing your work table" and in another 20 minutes of the timer, my sewing room was beautiful.

Next, as I said in my previous post, I decided to blog about my success. Well, the picture I took with my phone would not transmit through bluetooth so I researched Apple posts about said problem and discovered it was not uncommon. I SWAPSed that problem and chose to use the digi camera but the battery was dead. While I was getting the charger, I heard a woman threatening someone outside my window. The woman being threatened said, "I am going to call 911." I HAD TO GET INVOLVED!

I will not stand idly by and allow crimes to be committed on my street. I am a responsible upstanding member of the community and I really do care. I am not joking here. A lot of people do nothing and advise others to do the same because it draws unwanted negativity. I don't want the attention or the focus but I cannot stand by and allow others to be bullied.

So, I open my window to a woman yelling. "Keep it up! I'm going to f@*k you up bitch!" from her car to another woman standing on the sidewalk with her doggie.

I tell the woman in the car (I live on the second floor, like Luka) that I am calling the police and she threatens me too. She says, "I know where you live. I am gonna to come back for you. I'm gonna send my cousin here and you better watch out. It may not be today or tomorrow but you gonna get f@*ked up!"

Well, if that does not bring out my crazy I do not know what will. I grew up in this neighborhood when it was bad. I went to school with this woman (not literally, although I may have). I let kids hit me, kick me, call me names, pull my hair or put gum in it, knock my books down, take my candy, and warn me that I better run home after school or they were going to... I did not fight back. I don't know why. Maybe, because I had my sister to defend me or maybe because I was terrified or maybe because I was tiny. I was so tiny. In sixth grade, I still wore a kid's size 13 shoe. In seventh, my Super Pro Keds were an adult size 1. My bathing suit was a size 6X. I could still fit into the shirt from the shorts set from Sears that my grandmother gave the summer I went with her to live in Puerto Rico three years earlier. Here I am in sixth grade wearing the polyester shirt. 

I have a lot of bottled up anger inside me and there are times when adrenaline takes over and subconsciously, I recognize the opportunity to unleash my rage and I seize it. With a TBI, those emotion are very close to the surface. I know this because when it was over I did a quick emotional cycle, and I realized besides fear, anger, and outrage, I felt exhilarated. I scream back, "BRING IT ON! I can't wait. I am ready for you anytime. You have no idea how crazy I am. Do you want me to come down right now? Let's do this! You picked the wrong bitch to mess with!" I do not even hear her response. I call 911 with the window still open and report that a woman is outside my window threatening to kill me. I knew the dispatcher was not taking the call seriously at all. She asked, "And how did you come to be involved in this incident?" When I tried to give her the license plate number, she said I could give it to the police when they got there. I made her take it down anyway. She took my apartment number down and assured me that the police were on their way.

Well, no patrol car came. Then I hear horrible screaming from the street and a dog barking and the woman saying something about getting the other lady up in that window too. I look out and the bully has come back without her car, bearing a pipe. The other woman ran to the safety of a neighbor's car while her Javanese-mutt blend barked menacingly to protect her. The bully did not see me and I started to feel afraid. I could not believe the police had not come yet. I had tried my local precinct to no avail by then so I call 911 again. The dispatcher tells me a patrol car came by and did not see anyone so they left. WTF! He says he'll send another car. When I go downstairs, I ask my doorman and some neighbors if they know the woman who was threatened or if the police came. My doorman talks to me like I am paranoid and my neighbors refuse to make eye contact. Nobody heard anything.

 When the police arrive, I have to will myself to calm down because the moment I start talking, they roll up the windows and get out of the car and I realize I am the one who is going to get arrested if I do not figure out how to make myself clear. It was useless. They do not understand that by not responding right away, the woman had the opportunity to go park her car, find a pipe (where? in the conservatory?), and come back to attack us. The fact that there were a couple of dozen people on the street who did not seem to even notice anything scares me even more. Kitty Genovese, here we go. I could be murdered in broad daylight in front of several witnesses and no one would do anything. And I am the crazy one? There was a lot of. "Ma'am I am trying to explain to you..." and "If you will just listen, you will understand..." They would not have even written anything down if both the other woman and I had not insisted. They gave me a slip of paper with the blank claim number area circled and all my information on it and told me to call the precinct in 24 to 48 hours to get the claim number. What? Why are they giving me back the information I just gave them? It was not even a duplicate form. They wrote nothing official down just put some stuff on the back of a piece of paper and folded it up. When I asked about this, PO Toro asks me if I am trying to tell her how to do her paper work. "I am going to copy it over. I don't like my reports to be all sloppy." I gave them the license plate number too. I want to put it here in my blog but I guess that might be stepping over the line. At least I have a line somewhere.

Four hours after I came up with an excellent plan, life and my brain injury got in the way. I need a vacation. Fortunately, I have one coming up and from the weather forecast I just read, I may be spending a lot of time indoors blogging.

Useful Systems

Yesterday my neuropsychologist said,

"You seem to have some strategies for doing things. I am wondering how successful they are."

My response, "Is that your way of asking me if they work or are you just thinking out loud," while mildly amusing at the time sent me off on a tangent.

I had just completed the cognitive testing following the completion of the exercise study in which I participated. One of the tests is to listen to a list of 12 words and repeat back as many of them as you can remember. (SPOILER ALERT: If you ever have to take a nueropsych evaluation test and you are afraid you might come across as smarter than you really are do not read the rest of this paragraph.) I find and have always found this an incredibly easy test because the words always fall into exactly 3 categories each of which has exactly 4 words. For example, there could be 4 vegetables, 4 gardening tools, and 4 jungle animals. Apparently, most people taking the test don't see this and just try to memorize a list of 12 random words. 


Later during the session after a few other sub-tests, the tester says, "Do you remember that list of words I gave you? How many do you think you can remember?" Well, to me, the obvious response is "12," or "All of them." If they want me to list the words why not say, "Please list as many of the words as you can remember?"

So, off we went on a tangent, that led to another tangent and Dr. T's query was never addressed. At least not that I can recall. When I reflected on the session during my walk home, I felt embarrassed that instead of taking advantage of my therapist's training and wisdom to learn something new, I was paying a rapt audience of 1 to practice my stand-up routine. Oops.

It left me thinking about my strategies. I am a creative problem solver and do generate many excellent strategies but do I use them enough to make them habit? No, probably not. I like to think it is the curse of the creative mind that the ability to generate many solutions is linked to the inability to execute them successfully, thoroughly, or repeatedly. A never-ending loop is developed because as one strategy is forgotten a problem is created generating the opportunity for yet another solution. Often in my infinite wisdom, I pat myself on the back for coming up with a great "new" idea, and then the mocking disorganized mess of my computer's Documents file reveals that there exists a file last modified on February 15, 2009 with evidence of that same novel concept. Yes, another BIM. That is my new acronym for brain injury moments. Without the sisyphean battle trying to hold on to my job as a teacher occupying all of my energy, I am finally able to notice, reflect on, and even laugh at some of my BIMs.

Today when my husband left for work, he said take care of what you need to do. Of course, he was referring to my effort to create a packing list for my upcoming trip. Here I am blogging. Earlier this morning I decided to try a new strategy and was so excited by how successful it was, I came up with another strategy to help me use it again. Blog about it.

Here it is:

Okay I just wasted 15 minutes (maybe more) trying to figure out why bluetooth sharing will not allow me to turn it on so I can send the photo of the awesome new system I created to my computer. I am off to use the new system to re-photograph it with a digital camera. Timer set for 5 minutes.

Well, the best laid plans... blah blah blah. My battery was dead and I got involved in a street incident and so now the police are on the way.

RTW after TBI

I am part of a discussion group concerning issues of brain injury. Recently, I contributed to the topic of returning to work. All of the research suggests a supportive work environment with positive feedback with the goal of addressing concerns prior to a crisis. This was what I added to the discussion based on my personal experience:

The problem I had, and that I see as an obstacle for anyone returning to work is that there are "crises" that do irreparable damage and then all the review, support, and feedback are useless. It is almost impossible to anticipate what will bring out these disastrous moments. Whether you go back to work immediately or you take time to recuperate, nothing tests your limits like the stress of work (except maybe navigating the NYC subway system). Once I had my first inappropriate, emotional response to a colleague brought on by fatigue, auditory processing problems, unexpected confrontation, difficulty reading social situations, and impulsivity, I was treated differently. No amount of education or explanation that my actions were unintentional and not personal can erase the damage that was done. From that point on, the anxiety that I was going to overreact again contributed to my ability to concentrate and do my job. Working in an environment where my colleagues expected strange behavior from me became a self-fulfilling prophecy. 

The feedback I got, while well-intentioned, did not help. Think about how others feel. Try to control yourself. By the time I started to get the cognitive rehabilitation I needed, it was too late. 

I am happy to be on disability now. My family appreciates the less stressed me. I can focus on my recovery. I have more time to exercise which is crucial to my well-being and cognitive functioning. I feel like a more capable member of society than I did when I was working. 

I would be very leery of going back to work now. I am not sure I could work in any capacity involving face-to-face interaction with other people. Every BI is different so I cannot speak for others, but the Internet is a beacon of hope for me. Time will tell. I really want to be of service and part of the solution. The BI community needs this and I know we can figure something out together.

How would you interpret this picture?

Last year when I was still struggling to do my job, I asked two of the kindest, most generous women at work if they would consider mentoring me. They both work in the Learning Resource Center and therefore have a lot of experience with students with disabilities. They agreed, and we met every couple of months to set goals. If I ever needed advice on how to handle a social situation, their advice was always dead on.

One day I walked into work and on my desk was a present, the above picture in a frame wrapped in pretty paper. I started to cry because on the card was written, "I saw this and I thought of you." It was signed by one of my mentors. I was not crying tears of joy. I was hurt by what I thought she meant. After discussing it with my neuropsychologist, I decided to ask her what she meant by the picture. 

I was so way off in my interpretation of the picture, it was bizarre. I am still not 100% sure how to interpret it so I am soliciting suggestions. Anyone out there reading this blog, please leave me a post telling me how what you think this picture says to you when accompanied by the message that the picture made someone think of me.

Do not tempt fate!

Last night I got the news that the boyfriend of a friend of mine died. He had brain cancer and lived 27 months after his diagnosis. After his first surgery, my girlfriend asked me if I might share some of my experiences with him. I was happy to oblige. His first tumor was on the right side of his brain. He was in denial that it had affected him at all, that there may have been some residual "brain injury."

About a half an hour after reading the email, my heart rate shot up for no apparent reason. I was sitting on the couch watching The Bachelorette, thrilled that she finally said FU to the egregious Bentley. I got up to get an ice cream and the room was spinning. My eyes could not focus and my heart rate increased. I asked my SO to take my pulse and indeed it was quite high. He kept insisting that I might be having a reaction to the news but I said no. I have frequent panic attacks and this definitely did not feel like one. We called the doc and she said to go to the ER. We tried but by then I could not walk and was having trouble breathing so we called an ambulance. The paramedics arrived and my limbs were losing feeling. In the ambulance, I was sure I was dying. I saw the white light and I felt at peace. Then suddenly I was struck with the thought that I was not ready to die. I started to feel better when we arrived at the hospital but the ball was in motion and they had to do all the tests to make sure it was not a heart attack.

Needless to say, it was not a heart attack. I walked home from the hospital a half hour ago like I was Ebenezer Scrooge on Christmas Day. My glib post from yesterday mocked me so I had to write. More about my own denial about my brain injury to come soon.

Do you know what scares me more than the thought that my life might be half over?

The possibility that I have not reached the halfway point.

because I got a TBI

I was gonna clean my room until I got a TBI
I was about to find the broom but then I got a TBI
My room is still messed up even though I try
- cause I got a TBI [repeat 3X]


I was gonna get up in the morning before I got a TBI
I’m always tired and so sleepy cuz I got a TBI
I am napping all day and I know why
- cause I got a TBI [repeat 3X]


I was gonna go to work but then I got a TBI
I didn’t get the promotion cuz I got a TBI
Now I'm on disability and I wanna cry
- cause I got a TBI [repeat 3X]


I was gonna go to court before I got a TBI
I was gonna sue your ass but then I got a TBI
They got away with all of it and I know why
- cause I got a TBI [repeat 3X]


I wasn’t gonna shout in your face but I have a TBI
I was gonna keep my mouth shut but I have a TBI
Now I got no friends left and you can see why
- because I got a TBI [repeat 3X]


I was gonna take a shower until I got a TBI
I was gonna put on some fresh clothes but then I got a TBI
Now I’m sittin’ in my own funk and swattin’ at a fly
- because I got a TBI [repeat 3X]


I was gonna make some healthy food but then I got a TBI
I was gonna eat some veggies too but then I got a TBI
Now I'm eating corn flakes from the box and they all dry
- cause I got a TBI [repeat 3X]


I mess up all my sentences because I got a TBI
I lost my memory and sense of time because I got a TBI
Now I don’t know how to do what I do or even why
- cause I got a TBI [repeat 3X]


I'm gonna stop singing this song because I'm a TBI
I'm singing this song wrong because I'm a TBI
And if nobody hears me I know why
- cause I'm a TBI [repeat 3X]

Defensive Driving Tips Part 2

Know where you want to go.

I am sorry I took so long to resume my posting. The momentum for my defensive driving metaphor is diminishing as entropy sets in.

I spent about a week in Missouri visiting my aunt and grandmother. I have not been so happy and comfortable is a long time. They were both so kind and welcoming. It really felt like home.

My grandmother looked exactly the same as I remember her. She is thinner and not as steady on her feet as the last time I saw her. Her hearing is going but she does not seem to mind too much. When she picks up a piece of the conversation around her that seems interesting, she just asks. "Who is that? What did she do?" Upon hearing the information she sought, her response was so adorable. "Oh, did she? Well, how about that." I did not realize how Minnesota she sounded until I discussed it with my mom on the plane ride home.

(Total non-sequitur alert! My whole life I have always said my mother or my mom in conversation. It bothers me when someone says Mother or Mom in reference to her own parent. I know that she is using it as her mother's name but hundreds of millions of other people's moms have the same exact name. I read it on other people's blogs and it still irks me. It makes me feel like they claimed it first. Imagine a conversation between two people talking about their respective mothers both just saying Mother.

"Mother bought me a sweater this weekend."
"Oh? Mother had her art opening on Saturday."
"Yes, Mother mentioned it."
WTF!)

Now, back to our regularly scheduled programming. What was I writing about? My lovely grandmother and my awesome Aunt Kay. I had not seen my grandmother since I visited her 22 years ago with Sachi. It was the summer before I started teaching and now I returned the summer after I stopped teaching. An interesting set of parentheses around a career. Maybe a tornado picked me up the last time I was in Missouri and I have been off trying to find the wizard for 22 years. I was conked on the head and woke up muttering, "There's no place like home."

I slept and slept. Occasionally, my Aunt Kay would be suddenly appear startling me from my slumber. Not in a disconcerting way. Just a surprise. In many ways, she reminded me of me. She is funny and opinionated and a little bit cynical. She is unpredictable and would sometimes disappear, even right in the middle of a meal. She loves her sweets and her coffee, just so. She is generous and gives thoughtful gifts. The last time I saw my Aunt Kay was at my first wedding in 1985. I do not remember much about that day so my real memories of her are from my childhood. In the fall of 1970, my mother took us to live in Santa Monica with her mom. My aunt Kay lived about a mile away. One day my brother and I walked to her house alone without telling anyone. We were both so impressed with ourselves that we could find it. My mother was less than impressed when she could not find us.

I cried on the plane home, already missing both of them. I want to go back soon.

This morning I woke up with a singular thought reverberating in my head compelling me to write.

Who am I? Who am I?

I do not know the answer anymore. I am 48 years old and I am going to have to come up with a new answer. I am not "disingenuous" and anyone who accuses me of such can go suck it!