Still mourning life before brain injury

Last night I dreamed that I was in my classroom trying to teach a math lesson. There was a mix of children and adults, but mostly adults. I had them standing in a circle to act out a problem. They were holding some big strands of string in a big tangled ring. I realized I was explaining the problem incorrectly and we really needed a Venn Diagram, so I started giving individual orders to people. I yelled and pointed at them, "You over! You under!" I couldn't remember anyone's name and I was going too fast. Of course, confusion built and the questions began. Me? What do you mean under? Under where?* Soon they were a tangled mess and I was yelling at everyone. WHY DON"T YOU LISTEN! WHAT PART OF OVER IS DIFFICULT FOR YOU! I even yelled for my assistant, asking why no one was helping me. Naturally, I got no help because no one had any idea what I was trying to do.

Eventually, I scrapped that part of the lesson. As I was wont to do in my days of teaching, I quickly conceived of an alternate approach to the problem.** I cut them out of the string, broke them into 4 groups and took out some giant chart paper. One group at a time, I explained the directions. When I got to the third group, I was lost. I forgot what I was doing, what I had told the first groups, and even how it was related to the problem. I told the class I needed a minute and I went to the bathroom and cried.

This scenario is not so different from some of my attempts to teach in the same way I did before my injury. I did not usually yell at my students.*** The dream did evoke the helplessness I felt in those last months. While I was crying in my dream, I told my daughter that when I wrote my play, this would be the opening scene. It would show my struggle as a teacher with a brain injury.

My play? Am I writing a play? A dream. It was just a dream.

I have decided to separate my tangential thoughts as foot notes.

*Ha! You said underwear. I love this joke!

 **When I was good at my job, this skill came in handy when some students understood one way and others needed a different approach. I was a nimble teacher, always thinking on my feet. I had an endless supply of ideas and metaphors that sprang to mind and I reached many different kinds of learners. I tried to teach "by the book" keeping lessons simple and straightforward. I would have given anything to be able to stick to a lesson plan where I stood in front of the class and lectured, sampled problems, answered questions, and then gave the same problems for homework. I just could not do it.

***With age and experience, I had grown very patient. I also maintained a steady practice of acquiring new skills outside the classroom, drawing, language, computers, sports. My philosophy being if I want to stay in touch with the process of learning, I had to be a learner.

Imagine a beautiful angioma

I am in a weird place right now. I want to write to move ahead. I want to write to let go. I want to write to prevent myself from saying or doing anything I might regret.

My reaction time is fast. Whenever someone speaks to me, my brain prepares for an attack. Anger, fear, sadness, and rejection rise to the surface. The thoughts that fire rapidly across synapses are the articulation of these emotions. Having grown up in a house where words were sacred, I find it difficult to refute these irrational thoughts.

During the most recent presidential debate, I yelled at the television. NOOOOO! It was only 5 minutes into the program. My husband made me turn it off since it was too upsetting. I talked to my cognitive therapist about the event. I was angry at the moderator because she had promised to make sure the rules were followed and the questions were answered. She buckled so quickly and I was furious.

The election makes me worry about my future. I worry about money and health care and injustice and corruption and pharmaceutical companies and my daughter and clean water and the list goes on and on. My cognitive therapist asked me if I could trust that things would be okay, that the people would be smart enough to make the right decisions. No way, I replied. Trust is a big deal. History has shown me that I am the only reliable place to put any trust whatsoever. I guess it is one of those hot button words.

Imagine, on the other hand, I can do. I survived made it through my childhood by using fantasy to escape. As an adult, I worked hard to be grounded because I had more control. A job with insurance, a savings account, a mortgage, no credit card debt. These were all the ways I built a fortress of security so I would not be afraid. And now? With the future so bleak and my castle in ruins, I will retreat once again into the land of make believe. Can I imagine a serene and comfortable future? Yes, I can see it and that will have to do for now.

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.

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.

The benign indifference of cookies

So I baked some cookies this weekend. More than I should have, in retrospect. Monday I got this crazy idea in my head that I would send some to school for my former fifth grade class as a way to say goodbye. I attached a little note saying hi and I hoped the were doing well and how certain I was they were learning lots of math with their new teachers. I asked a good friend to send them to school. Big mistake. Now, as a result of my impulsive act and the school's refusal to accept the cookies and note, I have made people uncomfortable again. Worst of all my friend, with whom I had hoped to share a special day. Now, my presence is tainted with the stench of conflict and toxins of betrayal.

And all because of these stupid cookies. Look how innocently they smile up at you, mocking and shiny.

This is the one Tess got into.

Sly dog that she is, she hid it and waited for me to go to bed. She was sleeping on the couch and as soon as I turned off the lights and went into bed, she snuck off to eat it. I only caught her because she usually comes bounding into bed before my head hits the pillow. When she was quiet, I knew something was up. I never knew dogs could plan ahead. Well, at least somebody wanted my cookies, even if she couldn't have them. I am trying to take it in stride but I am deeply hurt at the rejection and being disinvited by my friend. I understand why but it still feels terrible.

I feel very alone and misunderstood right now. This too shall pass.

The Sun Is Shining In My Head Today

I belong to an online support community. After a recent post, the moderator of the group wrote to me expressing concern that I get Positive Human Contact. This was my reply.

Thank you for your letter. That is one thing that I can continue to rely on. All things change and my mood is in constant flux. It is raining here in New York City so my head is hurting but physical pain can be remedied to some extent with meds.


Being away from work has relieved me of a lot of negative human contact. I think I got so used to those uncomfortable interactions on a regular basis that it became better than nothing. I was out of work three times this year before I finally left. After 22 years of working in the same private school, only a couple of my colleagues called me. I can never go back there. The email that the administration sent to all the parents and staff was so vague it left many people thinking I had a terminal illness. There is no way I can contact all the parents of all the children I taught to say goodbye. Even if I did, what would I say? I am not sick. I just have brain damage. Sorry I thought I could teach your kid but it turns out I couldn't.


A few parents did call me and so I am doing some volunteer work. It is essential to my sense of well-being. I am trying to get into a rehab program here in the city. We have the Rusk Institute and the Brain Injury Research Center. I am just starting a study on how exercise helps mood, cognition, and something else TBI related I can't remember right now. As I wrote those words, I suddenly realized the word I sought was memory. I kid you not.


On a positive, albeit harshly realistic note, my disability from the private insurance company from work was approved yesterday. I can't wrap my head around the fact that I am disabled.


I really appreciate you taking the time to reply to me privately. I don't even remember what I wrote now. When the sun is out, I cannot conjure up any memory of the rain. Unfortunately, the reverse is also true. Like my husband (who is Irish) always says, every day above ground is better than the alternative.


Your letter helps me remember to make an effort to find the positive. Please know that you really do make a difference.

Aly had an angioma which bled into her brain

And everywhere that Aly went she hid behind her pain.

I write here knowing that I am screaming at the top of my lungs from the top of the tallest building in the world but as in a dream no sound comes from my mouth. My consciousness stirs me from my slumber ever so slightly as a part of my sleeping mind asks why, why no sound, why can't I scream?


I had lunch with a wonderful woman from work. Her story is remarkable. There are so many amazing people out there. I never got to tell her that she was the reason I was hired. She understands the paralysis. The inability to move. The tears that come from nowhere and just will not stop. She lost her daughter. Her own cancer is in remission. She made time for me. She listened to my story, and I to hers. And now I want to live with my mommy so she is never alone. And I can cry and she can pat me and tell me it will be okay.

I work in isolation and fear. It should not be like this!!!

I trip, fall, and then, get up again.

I am at school. A student, actually a graduate student, is what I am. It is a bit of a mind %*#@ if you want the truth. It feels like I am dreaming.

I know this looks so gross. It is one of the worst bruises I have ever had. I have to stop falling down. I need to go read. Wish me luck.

If I can't have my brain back, I may as well get a degree. It is like the Wizard of Oz tells the Scarecrow, "Why, anybody can have a brain. That's a very mediocre commodity. Every pusillanimous creature that crawls on the earth or slinks through slimy seas has a brain! Therefore, by virtue of the authority vested in me by the Universitatus Committeeatum e pluribus unum, I hereby confer upon you the honorary degree of Th.D."

Life.Support.Music.

is the documentary chronicling my friend Jason Crigler's recovery from a brain injury, will air Tuesday, July 7 at 10 PM EST. It will be shown on PBS, as part of their POV series. In the New York City area, the POV show is on channel 13.

Jason was the first person I met after my injury who had any idea what I was going through. He had an AVM which is a similar vascular abnormality but with much larger vessels hence a huge bleed. He is an amazing person and just being around him made me feel less alone in the world. He is also really funny and his delivery is so deadpan, you don't expect it. We had dinner at Henry's and when the waitress came over and asked if we had any questions about the menu, Jason said, "Yes, I have a question. Do you serve food here?"

Certain states will show it at different times. KCET Los Angeles and WHYY Philadelphia - Thursday, July 9 at 8:30 PM. WGBH Boston - Sunday, July 12 at 9 PM. To enter your zip code and find out when it will air in your area, go to http://www.pbs.org/pov/tvschedule/

He was interviewed on the CBS News

Below is a mixed media piece called The Bleed I did in the summer of 2007 in a workshop with Roberto Juarez.

Back from Vakay...So?

My vacation was great. It was so healing and helpful because I really tried to stay in the moment while I was there. It took me about three days to stop obsessing about work and problems and brain injuries. (The packing was only a tiny bit less hellish aided by little cards I made with items written on them so I could literally move the cards from one side of their pocket holder to the other as soon as the item was packed. Only problem was I forgot to put a couple of items on the cards so... I bought a toothbrush and a paperback novel in JFK. No biggie! Way too many dresses and sweaters. Too hot for either of those.)

Here is some more good news. I read TWO whole books on my trip. That is twice as many books as I have finished in the two years since my surgery. I was very proud of me. The first was the airport purchase: The Shack by Wm. Paul Young. I got into it and felt really spiritual and good. It helped me let go a little. Then I read The Pact by Jodi Picoult which I purchased at the school street fair for a buck. It was a great page turner and I was riveted. So neither was about math or TBI related stuff. I was really on vacation. I stopped having obsessive thoughts of inflicting serious damage on whatever was ailing me and started to just relax.

I watercolored my favorite rusty pier. I photographed my favorite rusty pier (as evidenced above). I pieced together a fabric interpretation of my favorite rusty pier and began embellishing it with found objects. I also taught myself how to crochet round medallions that sort of look like the pictures in the book. I might need some help with that one.

Bri and I snorkeled almost every day. We ate delicious desserts prepared by the same chef we met last year Aaron. Strawberries, whipped cream, and meringue. Heaven! We danced until sweat poured from our bodies and our clothes were soaked. We played ping pong, never breaking our early record of a rally of 33. I guess I picked up some mad skills in that mad house.

I was randomly assigned to the group that has to wait three months for my TBI research group to begin so that kind of sucks. I will work on my art and post more pics soon.

I woke this morning back at home screaming and angry at something in a nightmare.

Good Sportsmanship!

That is the medal I always got in camp when I was a kid. It meant I was a spaz but I did not realize it and blindly followed the rules of whatever game we were playing. Thanks for playing kid! We needed one more on the bench.

I got RUNNER-UP for my hankie!

http://www.instructables.com/contest/mothersday09/

"In case you were wondering, judges from Singer selected the grand and first prize winners while the runners-up were decided by user votes. Sorry for the delay in the results, Maker Faire prep has overtaken us, but we wanted to make sure these results went out out (just) before the weekend. Thanks again for entering a great Instructable and we hope to see more good stuff from you in the future."

reads the email from the organizer of the contest which ended a week ago. I actually tried to conceal the fact that I already own a clearly superior Bernina sewing machine in my photos. When a packet of needles ended up in the background of a photo, I left it there thinking, a little "SINGER" product placement won't hurt. Ha! This was not in the rules. I was so mad when I got the results of the contest two years ago. This time I know what I am going to do. They are going to send me a little robot tshirt, their cute little mascot and I am going to wrap it around our dartboard and throw darts at it. Eventually, I will hit it too. Many people don't know this but I played darts in a league for about 8 years. That's how I met my husband. I played B division most of the time but The one year I played in the C division, I was the Ladies All Star and I won a plaque. I scored more points (4375) than the other 45 or so women in the division. Of course, in B and A the Ladies All Stars scored well over seven thousand but whatever. The men in B and C who win All-Star usually score over 10,000 points. You see where I am coming from?
Last year as the school year was ending, I asked one of my former students, a lovely girl who came by every day to help me out in the classroom, if she would write a letter on my behalf nominating me for some national teacher award. She did so gladly and even wrote me from camp telling me that her letter won an essay contest. I never heard from those people.
External validation! Why is it so important to me? Where will I truly find it? How is success measured? Here is what is not so high on my list of aspirations: fame, fortune, power. Here is what is: knowledge, wisdom, validation, understanding, comfort, freedom, creativity, and beauty (not personal although it was important until time took over and I realized it was merely a gift or perhaps, a loan from youth).
Yesterday, I decided to let someone else handle a big problem for me in exchange for a large sum of money. I felt relief to turn it over but still fear that I will continue to be misunderstood.
I am out of synch with my environment. I seek harmony!

Oh BTW look for my Moth Away! sachets on sale soon over at Etsy.com
Link to be posted soon.

What a world! What a world!

I'm melting.

Walking home from conferences where most parents are happy to hear they have a great kid but some are fixated on HONORS MATH.

I stop at the supermarket and hear a father tell his much taller teen-aged son that he is selfish for choosing a $5 box of Fruity Pebbles not on sale, as the box glides by ostentatiously next to generic white bread, generic hot dogs, generic OJ, and generic cheese.

I feel unbearable sorrow. Yes, we all want to do a good job, to be liked, to not be selfish.

Inevitably, some of us fail.

What remain"ed"?

My father's cremains arrived yesterday while I was seeing my cognitive therapy doctor. There is a lot of overlap between emotional issues and cognitive dysfunction these days. I am doing my best to get enough sleep, exercise, and food these days. That way I know at least when my response to a situation is inappropriate we can rule out any of those problems. Plus, they help maximize my brain functions and emotional disregulation. So, Dr. S. thinks let’s deal with the death stuff there and I will focus on the time, memory, talking, language misunderstanding, and brain injury stuff to Dr. K.

I am perhaps obsessing over my father's death. My musings change neither his life nor the choices I made while he lived. Some time before my surgery I stopped fearing death because I realized I would not know if I died. I would only be aware that I was alive because conscious thought is part of life. I was so pleased to come across this article.

I have temporarily placed my father’s cremains (such an odd word) next to Suki’s on the windowsill in my living room. His funeral will be held later this month and the cemetery does not store cremains. Ed liked cats so he and Suki can bask in the sun together. Suki only lived at home with me for the summer between junior and senior years at college. Ed put her under a broken 5-gallon glass water-cooler bottle to just see what she would do and she cut her nose trying to crawl under the tiny edge. Suki spent that summer hiding under the bathtub because Sabrina stalked her. Ed discouraged my attempts to make any modifications for her because "animals adapt" or "natural selection means the strongest survive" or some other stupid shit. I just wanted to feed her in a different room so she could eat in peace. Instead, she ate in the bathroom with the panicked urgency that the wrath of Sabrina was about to befall her. She can tell him her story.

Right out the window, he can see 240 West. We left in the middle of the night when I was 16 because not paying the rent had caught up with us and we were about to be evicted. He told us it was better because there were too many ghosts there. I loved that apartment. I left behind so many books I still wish I had. Ed can reflect the place where he raised Suz, Matt, Tim, and me with our mom Pat, and he can visit those ghosts he created.


Raised is not the right word. He reared us? Attempted to raise us to the best of his ability? My sister's tribute at his memorial showed homage to positive and there were many positives. There were also drastic measures he took to force conformity to the ideals he imposed on us. As extensions of his extremely narcissistic self, his children could each act out fantasies that he could not. He was very proud of the fact that despite brown eyes and curly hair being dominant traits, we all had blue/green eyes and straight hair. We had to speak perfect English. In the guise of WASPs we could go where he could not. He liked to call me his "Cliffy" even though when I actually learned anything in college that contradicted his doctrine, I became the kind of loathsome Cliffy who would have looked down on him. He both hated and loved this country. He wanted us to be all of the icons he revered but pretended that he hated for their exclusivity. Matt was supposed to be a professional hockey player. I was supposed to be the screen actress Ali McGraw or Candace Bergen. Funny, dramatic, all-American. He used to get very annoyed at me when my glasses slipped down on my face. Like him, I have no semblance of a bridge on my nose. It never made any difference to me but it seemed to emphasize the wideness and remind him of what he thought was ugly in himself. It was as if I was mocking him by letting my glasses slide down on purpose. I don't know. I actually grew up thinking I was ugly because of those features.

I love aging because I feel like I do not have to worry about whether or not anyone thinks I am attractive anymore. Who I am is much more about what I do and say. What was I thinking in this picture? I know it is probably my lunch in the bag but I am imagining it is something different because my face is saying, “I have a secret.”