Tuesday, June 28, 2011

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.

Monday, June 27, 2011

Wednesday, June 22, 2011

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."

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!

Sunday, June 12, 2011

Navigating a Social Life After a TBI

I was trying to describe to my neuro-psychologist how difficult things became at work after my surgery. After one or two disastrous run-ins with co-workers, things went quickly south. All it takes is making one inappropriate comment or misunderstood joke, for people to be on the look-out for the next one. Once that started, I was doomed. I started to feel uncomfortable because of the confrontations. I realized that there had been meetings about me with the principal before any meetings with me. Combine this with not understanding exactly what was being said or what people's intentions were and I was totally on guard. When the other teachers glanced at each other while I was talking, I became very anxious. Even worse was when nobody would look at me at all. The anxiety made the confusion worse and lowered my ability to maintain self-control. I began to dread meetings days in advance, working myself into full-blown panic attacks before they even happened. If anyone dropped by my classroom unannounced, I was terrified of what I might say or do to worsen my situation. This past year I asked to be excused from all department meetings because after three years of trying to make amends by being overly obsequious, I had only made things worse. My absence was interpreted as snobbery instead of total terror. "I'm not going to share my plans with Alyson. She won't even come to our meetings."

I bought every book on how to improve my relationships at work. I tried giving sincere compliments praising their work. I recognized birthdays and other celebrations by buying gifts and cards. I brought in food for my colleagues and left it in the staff room. I made myself smile and say hello and how are you and how was your vacation. I shared supplies, bought books for others without being prompted, and offered to do errands like copying or making labels. I said thank you and wrote appreciative emails detailing any positives and ccing the principal. I admitted defeat and asked for help until finally it was just too much. How attentive could I be with a TBI? Well, not attentive enough, as it turns out.

I likened the experience, for my therapist, to defensive driving. That is how it felt. I had to be on, on, on all the time to avoid careening into oncoming traffic. The aim of defensive driving, according to Wikipedia, is to reduce the risk of driving by anticipating dangerous situations, despite adverse conditions or the mistakes of others.

The level of vigilance it took me just to get out of the house prepared for work and on time was already taking a huge effort. Being in front of a group of children trying to convey math concepts, build confidence, nurture skills, and empower children to reach their potential was also hard. Now, add in my effort to incorporate all my defensive driving strategies despite accident after accident. Eventually, I realized there was nothing I could do. I just watched the inevitable car wreck as my twenty-two year teaching career burst into a flames and skidded off the road.

Defensive driving strategies seem more accessible without the stress of work. So, I will share my approach to social situations here.

One strategy is to leave plenty of space between you and other drivers. This is good advice both physically and metaphorically. I am sometimes impulsive and if someone is wearing a fuzzy sweater or clothes with an intriguing texture, I am apt to suddenly touch a sleeve or shoulder without warning. This is not cool. Most people do not like it. I do not like when people get too close to me either so this works both ways. It is also helpful to remember that I do not need to share everything that pops into my head with the other people. Keeping some of it inside maintains distance.

I am tired so I will continue tomorrow.

Friday, June 10, 2011


I know you are probably trying to be sympathetic or relate to me in some way, but when you identify with what I am experiencing as a result of my brain injury, I do not feel heard. Often, when I tell someone that I cannot remember what I was doing five minutes ago, he or she will say, "Oh, that happens to me all the time." Or in response to the fact that I cannot remember the names of things or the word I am trying to say, I get, "Welcome to aging."

I can't tell when I am hungry or full because my brain does not receive the message my body is sending: "I know! Sometimes I just keep eating and eating."

I get lost in places that were once familiar: "Oh, I have the worst sense of direction."

I do not remember whether or not I have met someone: "I know. I am the worst with names."

Everyone has experienced the feeling of telling a personal story only to have someone turn the conversation around to that person because of a one-up story or even a totally unrelated story that your story brought to mind. Often it is in an attempt to relate but sometimes it undermines your experience or feels competitive. Take for example, Peggy and Alexis on the Real Housewives of Orange County. You know Alexis is insecure and has to make everything about her. Oh, I forgot what I was trying to say. "I hate when that happens."

Listen folks, I know we all share certain experiences and that is what makes us human. I want to give you the benefit of the doubt and not assume you are trying to say that because you experience the same thing, my brain injury is really not something unusual. When you say those things to me, I feel petty pointing out that all those things happened to me overnight. Not to mention that in combination with all my other symptoms, I now have a debilitating, chronic condition which prevents me from working. I can't imagine that you mean to undermine my experience with your comments.

Before I left work, I did and said so many things I wish I could take back. Early on, before I knew better than to try to be funny, I said something hurtful about a colleague. "Don't you want to come to the Christmas Party and watch ___ get drunk?" The teacher I was talking to was appalled and said that I was really mean. I quickly apologized and admitted that it was completely inappropriate. When I mentioned that one of the side effects of brain injury was difficulty reading social situations and impulsively saying the wrong thing, my colleague asked. "Don't you think you might be using that as an excuse?" An excuse? An excuse for what? The fact that I am actually an insensitive jerk? Yes, I am using it as an excuse. And as my doctor pointed out it is actually a legitimate excuse.

I wish I could compare TBI to some other disabling condition so you could understand how inappropriate your comments are! Would you tell someone with a prosthetic hand that you drop things all the time because you are really clumsy? Would you tell someone with agoraphobia that you also hate crowds? What about someone with diabetes, would you say that you too should really avoid sweets? Would you say that your vision is really getting bad now that you are older to a person who had just gone blind? No, all of those comments would be considered insensitive. Why then are the comments to a person with a TBI considered okay?

Let me tell you what I mean by getting lost so you can understand how different it is for me. I never had the best sense of direction but fortunately in Manhattan you do not need to have one to get around. It is a grid system so the street numbers go up as you go north, and the avenue numbers increase as you go west. Plus, I have lived here my entire life so I rarely thought about it before my surgery. Last Christmas season I met a friend at the Museum of Modern Art. I knew it was on 54th Street near Sixth Avenue but I wrote it down for myself just to be sure. I decided to get off the Seventh Avenue train at 50th not 59th because it was closer to the museum. I got off and started walking in what I thought was the right direction but when I had reached 47th Street I realized I was walking the wrong way so I turned around. When I got to 52nd Street, I thought I had gone to far so I turned around again. When I reached 50th Street again, I started to worry out a little. As soon as anxiety or frustration begin, my ability to problem solve or navigate decrease. The second time I saw 52nd Street I wanted to cry. It feels like someone is playing a trick on you and moving the street signs around. By this time if I ask someone for help, I may come across as slightly unhinged so I am hesitant. My senses are flooding with unnecessary stimulation, the noisy cars, the loud crowd, the smells of street food, the alternating puddles and mounds of plowed snow. All the buildings look the same and I no longer remember if I have walked by them or not. I keep looking back at the piece of paper and trying to figure out which way that street would be relative to where I am. It sounds absurd but this happens to me about once a week.

I have been on a campaign to become a more positive person this year. I do not want to drive people away by complaining all the time but primarily I am doing it for myself. Hence, I will vent on this blog. Like Bart Simpson punching the air with his eyes closed warning his sister that if she gets in the way and gets hit, he will not take the blame. If anybody reads this, it's not my fault.

Sunday, June 5, 2011


One of the bloggers I follow posted a list of songs she purchased as a result of watching commercials. I recognized all of the songs and commercials but none of them compelled me to purchase the music. These songs embedded in the linked commercials did manage to persuade me to part with a few bucks so I could hear them again. I think you can tell a lot about a person by listening to the music that hooks them.

"Remind Me" by "Röyksopp"

"1234" by Feist

"Flathead" by the Fratellis

"Somewhere Over the Rainbow" by Israel Kamakawiwo'ole

"Chelsea Dagger" by the Fratellis

"One Week of Danger" by The Virgins