Happy Mother's Day

Last weekend my daughter remarked, "I sound just like you when I say that." Whatever it was she said I am grateful that I do not recall for it is never a flattering comparison that accompanies those words. I, too, have had that feeling. I cringe as words that sounded inane, laden with hyperbole, and spoken with that tone, have crossed the time/space barrier from my mother's mouth to mine. Why do I fear that I have become my mother? Why does anyone?

Today is a good day to remind myself that for every annoying habit or distasteful trait I inherited from my mother, there are dozens of positive qualities that she passed on to me that make who I am today.

For one thing, no matter how horrible things were, birthdays were celebrated with aplomb. I am generous because of my mother who every year bought us many presents, even when there was little money. She let us pick what the whole family would eat for dinner. She made a special cake. Thanks to my mom, I still think it is weird when people claim to have made something themselves when it came from a mix. Yeah, that's right! I made it from scratch! Hollah to my moms. She bought our favorite ice cream, even if it was butter pecan and nobody else liked nuts.

I am also thoughtful because of my mother. Yes, at times, I have wondered why she clipped and mailed articles about rowing crew to me for ten years after I was a coxswain for a year in college. I know, now, that she was thinking about me and she wanted me to know it.

These days, it is fluffy sheep and Sudoku puzzles and I love them both. Because of my mother, my sister also has this awesome quality. She is delighted when she finds a Custo Barcelona bag for me or anything with skulls on it. "I saw this and I had to get it for you!" Those are loving and sweet words and I get a warm fuzzy feeling when I say them. I need to remember that I sound just like my mother then, too.

I have friends again!

I have been doing pretty well, making many new friends through the Brain Injury Association. 

Two weeks ago, I went to the Sprout Film Festival with my first new friend. She is so smart and so strong and like me, was totally clueless about how bad things had gotten at her job before she left. 

The first time I met her, I tried to explain that I used to be smart. 

She said, I know, me too. 

I said, "No, I mean really smart. I went to Harvard." 

"I went to Yale," was her reply and with that we bonded. 

I wonder if we could start an Ivy League brain injury group? 

Last Saturday, I had so much fun with another one of my new friends. She is a super talented artist with a wicked sense of humor. She so cracks me up. We are the same age and she also grew up up in the city. We have a lot more in common but it's not worth delving into here. Anyway, we went to a rummage sale and found treasures. She kept singing, "We don't need no _____" to the tune of Pink Floyd's The Wall, as it got later in the day and I was pondering the purchase yet another unnecessary acquisition. 

"We don't need no Ikea curtains." "We don't need no vintage microscope."

Then out of the blue, she turns to me and says, "So, I guess you sister is in a lot of trouble." 

I said I had no idea what she was talking about.

"Her husband is a lawyer, right?" 

Yes. 

"Well, I heard on the radio this morning that he is her lawyer, that she was involved in some kind of protest, and that she got in a lot of trouble. He's going to be defending her. Her husband."

I started to freak out because we joke all the time so I had to make sure she wasn't kidding. I told her she was scaring me and that I hadn't heard anything. 

"Was she arrested?" I asked. 

"I think so, maybe, I might have heard it wrong, though..."

At this point I called my hubby and asked him to Google it. He called me back and explained the whole story. Apparently, my brother-in-law was defending some protestors opposing a new stop and search thing. (I think.) The judge found out who my sister is and wanted to her. Apparently, it made big news that my sister gave him a piece of her mind, telling him she disagreed with his ruling against the protestors. 

My friend felt bad, I think, and said she only mentioned it because she thought I would have already known what happened. I've been there. I totally understand and it didn't bother me. I am okay because I see a part of me.

Last night, another new friend took me to see a play. I guess I would be raving about how great it was if I had not fallen asleep in the middle. It was good though. It was about head injury in the N.F.L. and what they are starting to learn. On the way there, I was telling her about a misunderstanding I had recently with a family member. My sweet, thoughtful, ever positive friend exclaimed as I finished the story, "What a fucking bitch!" Immediately, she back-peddled a bit, recognizing that her reaction was slightly over the top. Well, those of you who know me understand why I relate to that. It only endears her to me more.

It is really a blessing to be friends with these ladies who are smart and funny and kind and creative but who also have a brain injury. We get each other and laugh about it. I still say I'm sorry a lot. But with them, they know I mean it. I love you guys!

PUT DOWN YOUR RULER

Yesterday, I officially withdrew from my Masters degree program. It makes me so sad to say that. Sad is an understatement.

Although the only action I needed to take was to write a short letter to the director of the program, my instincts to preserve my sense of self rendered me paralyzed, unable to execute this task for months.

I taught for 22 years. Prior to my surgery, I had spent the previous 12 years as THE sixth grade math teacher. When I started teaching just math, there was an honors section and three regular classes. Although it was not called "honors" and followed the same curriculum as the other sections, everyone knew it was the "top" group. It was a lot of fun teaching that section. It was not easy like many teachers thought. It was challenging and exciting and it was where I found my real strength as a teacher. When they did away with the advanced section, it became my personal mission to find a way to teach the gifted math student in a regular math class. A successful system would be one that benefited all of the students.

After my surgery, my return to work was a spectacular disaster. In previous years, Labor Day weekend meant the return to school to dust off materials, make a few copies, and label all the student supplies. In 2007, I returned to my classroom in August to prepare for a new year as I had always done. That first day back, I found myself sitting on the floor crying. I had been there for 5 hours and had accomplished nothing. It was the teacher who had subbed for me during my absence who consoled me, encouraging me to be patient with myself. For a fleeting moment, I felt like everything would be okay.

Month after month, things got worse and worse. I could not learn my students' names. I had never used lesson plans before. I had never needed them but suddenly, I was writing things on the board that made no sense. I could not talk and write at the same time. I could no longer do anything that required thought if there was any noise at all. Good luck trying to silence a group of sixth graders so you can string together an intelligible sentence. On the rare occasion I was able to get everyone to completely freeze and not utter a sound, my method for reaching that state was so alarming that my students were too terrified to process whatever it was I had wanted to say.

The advice I got was the same from everyone. Stop trying so hard. You don't have to be the perfect teacher. Just go in and stick to the plan. That is good enough. Even if I could have done that, it would have been so out of character for me. I had been a great teacher because I loved doing it. I loved the students. I loved the material. I loved a challenge and I was creative in my strategies for problem solving. I could get the classes' attention by whispering, by speaking another language, by singing my lesson, by doing a silly dance, or even by whipping out a puppet to take over the lesson. My favorite was my king puppet.

I got King Puppet at the Bank Street Book Store. I was drawn to him because his beard was so soft and furry. I used to love to bring him out at the start of our measurement unit, exclaiming simultaneously, "Take out your RULERS!"

After the first year back, my class load was cut in half. The next year, all of my classes were taken away and I was asked to work with just a few students who were gifted in math. Although, I was beginning to get a picture of the damage my brain injury did to my abilities as a teacher, I was, for the most part, in denial. It felt like a nightmare, being stripped of my responsibilities, my title as chair of the math department, my esteem in the community. However at the end of that third year, I thought I had found my new post-injury place. Although I could not plan a lesson or teach a whole group, I could work with one or two precocious kids whose needs I could assess on the spot. My long-term memory for math was intact so with help I was able to retrieve materials and introduce a new enriching and stimulating topic to a kid who was bored out of his mind in his regular class. That spring I applied to and was accepted into the Three Summers Masters Program in Gifted Education at the University of Connecticut. I think I remember blogging about being like the scarecrow in the Wizard of Oz. If I couldn't have a brain at least I would have a degree.

Fast forward to today. I stopped teaching last year and day after day, week after week, month after month, I have begun to accept that I cannot teach anymore. I wanted to hold onto a tiny bit of possibility. I thought I wanted to pursue the degree so at least I could write about the subject. If I had lost my reputation as an expert in my field, those letters after my name might be an acceptable substitute. Although some of the schoolwork was manageable, most of it required skills I lost like planning. Officially dropping out of the program was like admitting defeat, letting go of the last lingering hope that I might some day wake up from this nightmare and be my old self again.

My cognitive therapist helped me write the letter during a session. It took me 2 weeks to type it up and then I finally printed it and popped it in the mail. When I was shutting down the computer, I realized I had not dated the letter. Oops. Nothing I can do now.

Later in the afternoon, I was cleaning up and this sight caught my eye. I am not sure how or when he got there. Framed in the glow of the sun through the window was King Puppet laying face down on a stool. How perfect! How beautiful! How symbolic! The King Must Die! It took awhile but I was finally able to let myself put down my ruler.

Quilt Autopsy

My latest piece:

Too weird? 

Indelible Mark

Something very cool happened today. I struggle to express my frustrations here on my blog. It helps but I end up still stuck with the same question. How can I explain how I feel when the part of me that can explain how I feel is damaged?

Tonight I watched a short film made by David Anthony Alvarado called Indelible Mark. It was an incredible experience because it articulated so well exactly what I was trying to say on Thursday. After the viewing someone asked the film maker what drew him to the subject of brain injury and he said it started as a philosophical question. Who are we if not our brain?

Here is a link: http://www.braininjurydocumentary.com/index.html

Everything we rely on to define ourselves – our memory, personality, physical abilities and mental capacity – can be altered significantly when the human brain suffers acute damage.


What I liked so much about the film was the absence of any sugar coating. It was not a film about triumph over adversity. It was a film about identity. 

I want to be an inspiration, said the liar.

A philosophical question came up when I went to the art exhibit with the BIANYC group. Elliette was describing why she chose to make a portrait of one little girl from a famous nanny/shaken baby case over another equally famous case. She said something about the positive vibe she got from the first family. It probably affected the girl's recovery, she posited, not focusing on the loss and the anger.

I understand the sentiment and I do my best to see the positive in every situation but... sometimes it is annoying. I don't mean that it annoys me to be positive or that positive people annoy me. What bothers me is that the poster person for any ailment is the inspirational individual who overcame the worst circumstances and emerged a ray of sunshine.

Okay, don't jump on me just yet. I love puppies and birthday parties and sunshine. I am human. It's just that sometimes when I am really angry, I would like to hear about someone who had a crappy day. I want to read about someone who woke up in the morning and realized they still had a brain injury and it still sucked. Do I want them to wallow and suffer? No, but I'm calling bullshit on the happily ever after story.

There is beauty in the pain and the ugly side to the struggle. I think I just wanted to see a portrait of a real person on a real day facing brain injury without a smile. It is hard. It takes a lot of effort to maneuver the day remembering to eat and rest, to leave the house without pissing someone off or forgetting something important. A person who faces obstacles and endures, with or without a smile, is pretty good in my book.

After my brain surgery, people called me "brave." I do not think it takes bravery. What was the alternative? I guess I could have taken my chances and risked living with a bleeding cavernoma in my brain stem. I could have kicked and screamed and cried with fear as they dragged me into surgery. I just lay their on the table oblivious while they cut off my ear and peeled it back so they could burrow in and take out the tumor. I woke up and that was how I knew I was alive.

It was five years ago today. It is my second birthday. I lived and here I am but it has not been fun. It has been a nightmare that I could not believe at times. I lost my joy in my job. I was loved as a teacher and then I was loathed. It made no sense to me. I was trying so hard. I do count my blessings and I am grateful for what I have. I have made some really wonderful brain-injured friends who get it. I am still frustrated, still working at being okay with what happened. That struggle, that reality, is what I find a comfort and that is what I want to see in art, in life, in memoirs, in documentaries. Who is representing that guy? I feel inspired to find a way to tell my story, not to inspire others, but to acknowledge that I am.

Navigating Brain Trauma is a Lonely Process

Yesterday I went with some new friends from the New York City Chapter of the Brain Injury Alliance (BIANYC) to see an artist discuss her work. Elliette Markhbein's show is called Whack'ed ... and then everything was different: Portraits of Traumatic Brain Injury Survivors. The artist suffered a brain injury 8 years ago and started painting during her recovery (like me). When she was first injured, she told us, she felt alone in her struggle. She barely understood what she was going through and once she did, she could not imagine that there were others who were like her. The TBI survivors viewing the show echoed that sentiment.

http://www.biausa.org/tbi-portrait-project

A therapist, in the months after my surgery, said something I will never forget. I felt so powerless trying to express what I was experiencing. I just wanted to explain it to one person, find one person who could understand what it was like to have brain surgery and then struggle to complete basic and previously mindless tasks. The therapist said, "Nobody will ever understand." I tried to accept those horrifying words, but it turned out she was wrong.

Most of the brain injury survivors I've met were abandoned by friends and family members. I am no different. None of my relationships was untouched by my experience. I am one of the lucky survivors to have a husband and daughter who love me enough to make a tremendous effort to understand. I am also so grateful for the other survivors I am meeting through the BIA.

This brain injury is part of my identity now. Everyone is shaped by his or her experiences, needs to process the changes, and may find solace in the company of others with similar pasts. Recognizing change, reflecting on experiences, and articulating frustration is hampered, or in some cases impossible, when the organ responsible for doing these tasks is damaged. Try wrapping your head around that one.

new metaphor for living with a brain injury

I recently came up with a new metaphor for living with a brain injury. I belong to a BI support group that is not all that supportive because there are too many people. Our coordinator told us that she would soon be dividing us into 2 groups that will meet on different days. Folks wondered how the split would work and our leader said she was not sure yet. Why don't you make a positive group and a negative group? I quipped. The "negative" people all laughed. Although I place myself in the negatives, I think of us more as realists and the others as dreamers.

I do not find it helpful when members of the group talk about regaining skills they lost or accessing their pre-injury brain which is still there somewhere.

So here is my metaphor:

Imagine, if you will, that you used to live in a beautiful town, maybe Santa Barbara. You drove on coastal highways in a convertible and you had a year-round tan. Sure, you worked hard and had problems like the next guy, but life was good. Then one day you woke up and found yourself living in Times Square in New York City. The sights, the sounds, the smells were overwhelming. Little by little, you began to realize how far you were from Santa Barbara and that reality was devastating. Nobody was holding your job for you in case you came back.

All the people with brain injuries are in this predicament (in my metaphor). The dreamers focus on walking back to Santa Barbara. They know it is still there somewhere to the west and they are sure they can make it back. They congratulate themselves on each step closer. "Hey, look! I can see the Hudson River! California, here I come."

The realists adapt to life in this overwhelming, crazy new urban environment. Maybe they use ear plugs or sunglasses. Maybe they hire a guide to help them get around. They struggle to learn how to use the subway system. Adaptation is the goal.

It is like they say in A.A. It's fine to glance at the rear view mirror but if you stare at it, you are not looking where you are going. We all know what happens when you do not look where you are going.

TBI friends and communication issues

Mercury is in retrograde right now. It does not concern me that I don't know exactly what that means. It's something about Mercury's position relative to the sun and earth. Apparently, when this occurs, communication errors abound. Add in a TBI and prepare to enter an unprecedented state of confusion.

I sometimes feel like I am getting used to misunderstanding and being misunderstood. It feels like it happens in about 50% of my verbal interactions, both written and spoken. Most of the time, the results are mildly inconvenient or hardly noticed but when it is bad, it is really bad. What makes it worse is the TBI tendency to perseverate.

I start out feeling offended by what someone says. To the other person, I look angry, combative, sad or hostile. Sometimes, I lash out. Then, I begin to realize that my perceptions are not accurate. I struggle to set straight my initial reaction, while at the same time trying to understand the reality. I also want clarity. I want the other person to know what I thought. If that is not what was said, then I need it repeated or explained or justified. If I have not already shut down further attempts at discourse, I certainly will begin the process now.

A cacophony of thoughts battle for articulation. 

What did you say? Why did you say... I thought you said... 
Maybe, this time I am right. 
Why are you angry at me? What did I do? What did I say? 
I can fix this. 
I need to show you how what you said made me feel defensive. 
Why don't you want to hear it? 
I thought you cared. Maybe, I didn't misunderstand. 
Please explain it again. 
But if you said ... 

NO! Explain! I need to understand! 






Come back! 






Why are you running away?

There are a couple more weeks of until Mercury stops wreaking havoc. Until then, I will take a vow of silence. Starting now! Not another word.

Oh, shit. Forget that. I mean starting now. Wish me luck.


Argh! Starting NOW!

Pictures of food are boring

Why do bloggers post pictures of food?

I follow several design/home decorating/style blogs and inevitable there will be a photo of some dish or meal. It maybe something they made or bought or just what they are about to eat, but who cares? I know what food looks like. Are we imbeciles? Just eat it.

I unsubscribe from any blog that posts pictures of food. BORING!