It's not what you said. It's just what my brain thought you said.

I find one of the most frustrating aspects of brain injury is the challenge of expressing the changes my brain has undergone. I see a cognitive therapist and it bothers me that I have to clarify my issues.

One issue with which I struggle is language processing. I told my therapist that sometimes I do not understand what someone says despite asking them to repeat it. She suggested I ask them to spell it for me. I could not explain why this does not help the words or their meaning get into my brain.

I once asked a lady where she got a lovely robe she was folding in the laundry room.  Master Whore on the street, is what I thought I heard. I knew that could not be right so I asked her to repeat it. I listened carefully, convinced that it was the word “whore” that was wrong. Master Borgas Street? I gave up and nodded. It was obviously not a place I could go. Hours later up in my apartment I replayed the conversation in my mind and then I said the words out loud. Duh! Where would you get a bathrobe? Victoria’s Secret!

A few days ago I was on a conference call with some members of the Brain Injury Association of New York City chapter. (Such a bad idea! People with BI on the phone with multiple other people with BI. Yikes!) The discussion concerned our choice of movies for an upcoming event, selected shorts or a full-length feature film. L mentioned a seven-minute film.

“Seventy minutes?” asked E.
“No. Seven minutes,” repeated L."70?""No. 7!"

This went back and forth until E. explained that it was easier for her to understand numbers if the other person said every digit, like seven – zero. Can you please say it that way.

Okay, said L, it is a seven-minute movie. E just kept hearing seventy.

“Seven – zero?” E kept asking.“No, seven!” L kept repeating.

It was frustrating to listen to the interaction but it made my own issue a little clearer. The misunderstood meaning had made its way into E’s brain and it was not going to change. She heard seventy and it was like she thought L was refusing to comply with her request to state each digit. As a result, she kept emphasizing SEVEN – ZERO, like she was telling L – please say it this way so I can understand you better. Eventually, she gave up and began to refer to the length of the movie as “a little over an hour.”

I am sure you can imagine what happened after that. Everyone tried to help her understand, all talking at once. It seems comical when I reflect on it. It is hilarious, even, in a who’s-on-first?-kind of way.

It makes me laugh because I'm relieved knowing I'm not the only one with this particular symptom of brain injury. I do not have the answer nor how my cognitive therapist can help me, but spelling does not make things clearer once my brain receives a scrambled message.

Cavernous Angioma Trifle

My daughter's Instagram:

My mom made a jello mold of her brain with a blackberry to represent her tumor. #darksenseofhumor

Too soon?

Never! I am one of those people who thinks there is no topic off limits when it comes to humor. Anything can be funny under the right circumstances. I tread lightly when it comes to delicate topics, at least I used to pre-injury. Or did I?

There were times before my surgery I offended people with my sarcasm. The horoscope book, Relationships, describes Libra I as having "a wry sense of humor and often a biting wit." Perhaps I use it as a rationalization, but the next sentence seems insightful. "Their humor is generally not intended to hurt, however, or even to make others laugh, but to make them think."

So, what do you think of my dessert contribution to Thanksgiving dinner? It expresses gratitude and though icky looking, was quite delicious.

Creativity Expo 2012

I am an artist.

What hurdles must one overcome, what qualifications must one have, what level of training or number of pieces or items sold or percentage of time spent grants someone the title of ARTIST?

I have no idea. This is just a blog, not a soap box. I go back to one of my all time favorite movies, The Matrix, as a source for my metaphors. Neo asks the Oracle how he will know if he is the one. She tells him that you just know it. The Oracle points to the sign TEMET NOSCE and says, "It means know thy self. I wanna tell you a little secret, being the one is just like being in love. No one needs to tell you you are in love, you just know it, through and through."

So, now I present some ponderings on the topic. I remember early on after my surgery when I began to realize my brain had been altered, I was not sure how to communicate this. It seemed important that I get an official diagnosis. I read about malingering and hypochondria. How would I ever be certain that these words did not describe me? When the part of you that describes symptoms is the same part of you that is suddenly processing information incorrectly, how can you be sure if anyone understands you? You can't.

I wanted someone to explain what was wrong with me. I wanted a diagnosis. I wanted an indisputable argument to present in my own defense when I was misunderstood or berated for inappropriate behavior. I still haven't found what I'm looking for. I stand teetering on the precipice of self-knowledge. I do not need an endorsement from the outside world. I know. I have a brain injury.

In some ways it is like any number of life experiences or elements of ourselves that set us apart from others, we take comfort in being with people have that in common. A friend told me that after she was diagnosed with breast cancer, she could only stand to be around other survivors because no one else understood.

Using words to describe yourself to someone else is only useful when you have a shared understanding of those words.

But, I digress. What's new? Enough about me, what do you think of me? That is not a real question. I do not want to care what other people think of me anymore. The hardest part of leaving my job as a teacher was losing the sense of self-worth it gave me. I loved being loved by so many students and by so many parents. I loved that they loved me because I took the time to get to know each student. I was really good at it, but even better, they told me so. 

So am I an artist? Yes. There may not be any outside validation and there may be countless opinions, both for and against such a statement. I'm okay with that.

I am going to share some photos of my art. (Yes, there is still the part of me that is a vain and gluttonous whore seeking praise and approval. Why else would I blog at all?) 

If you are in New Jersey, near Raritan Valley Community College, stop by and check out work created by people with Traumatic and Acquired Brain Injury, including these pieces by artist Alyson Vega, now through July 22, 2012.

Cognitive Decay

Flow

Salvaged Dendrite

Negative Space

Sheared Quilt

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.

My art got press in Albany, NY

Times Union BIANYS Reports on Annual Art Exhibit

It says "artist" Alyson Vega. How cool is that?

Education must change now!

This what I believe is so wrong with how we are learning and teaching the next generation. Come on people can we not fix this problem? Let's at least start with letting me teach enrichment math to children of all different ages who need it. I am good at it and not allowed to do it. There is something very wrong with this picture. It is enough to make you sick and sick it has made me. I am in the hospital and nobody can tell me what is wrong with me. I will tell you what I think. 

My heart is broken and my brain is bleeding in response.

BI Support Group

So Monday I finally made my first meeting of the women's BI support group. The leader has an ABI like me. I learned that unlike a TBI, an ABI is caused by a bleed or a stroke or a vascular "accident." OOPS! I did not mean to rupture that malformity in my brain. Flipping body turns on you even when you're watching.

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.

May 20, 1936 - August 26, 2008

My dad is dead.


It is very strange because like Meryl he was dead for so long before we found out. I spoke to the doctor who treated him in the ER and she gave me all the details. He was dead before anyone ever would have had a chance to be there with him or for him to give any contact info. They looked up some old contacts from when he was there two years ago and apparently numbers had been copied wrong. Fortunately when the case was turned over to the city those guys had the good sense to try directory assistance before he was buried in Potter's Field.

I am sad on and off. It is unreal. I chose not to maintain a relationship with him as an adult (although I tried briefly after my brother died, he was impossible). I think people need to be needed to live. He was not feeling very necessary. His last book was cancelled. I told him not to come to Sachi's graduation.

He fainted and woke up before the ambulance arrived. He said it happened before and maybe his sugar was low. The doctor told me he was calm and cooperative in the ER. He died once and she brought him back with a punch to the chest. When he came to, he asked what happened and she told him. "So I was dead? Wow!" The next time he coded, they could not bring him back.

They didn't do an autopsy but it was not a heart attack or his diabetes. They think he threw a clot in his brain or lungs. When he was in his forties, he had a similar experience to the one I had where he lost sensation and vision. He went in the hospital and they thought stroke. He was released and his sight came back. I think he had a cavernous angioma in his brain. They are hereditary especially in Hispanic families. He never had a CT scan or MRI. They didn't really have that technology back then.

I loved him even when though I should not have. He was a dangerous and destructive man. (IN THE YOUNG EYES OF A SMALL CHILD) Never confuse the art with the artist. He spun up a childhood for us and then edited as he went along removing the typos, egregious grammatical errors, and places where he dug his pen so deeply into the paper it tore. The result was a fantasy. It was lies but as beautiful and lyrical and seductive to a child as Santa Claus or the Easter Bunny.

It 's so sad. I wasn't even that great a student. I got good grades but I did not try very hard at all. Short cuts, that was how he always described my efforts. I didn't even want to apply to Harvard and I don't remember what my essay was about. For sure, he edited it to the point where it did not resemble anything I could have produced.

And then in college, I fell apart. I could not tell which world was the real one, the bedtime story indoctrinated into me by my father, that societal norms were to be rejected because they cultivated fronts and behind the falseness was something to be feared or the one I saw in front of me where despite their Judeo-Christian beliefs and waspy prep school backgrounds, everyone sure seemed a hell of a lot happier than me. I wanted what they had but I did what my father told me to do.

"How are you?"
"How am I? Fuck you! Like you even really care."

It did not win me many friends. I conformed and I felt broken in two, then three, then more. And now there are so many pieces all over the floor I don't even know where to put them. Truth? Value? Beliefs?

Labor Day weekend I visited some friends and I gave them a copy of Blood Fugues. (I had about five copies.) David was worried I had made a mistake because the copy I gave him was signed to me. I said it was fine. (And I still mean it - this is not a hint asking for it back!) The signature made it even more valuable and he could sell it on eBay. I think I even joked that it would be worth more when he died. He was already dead. (ACTUALLY, I VISITED MY FRIENDS THE WEEKEND BEFORE AND DAVID GAVE ME THE BOOK BACK THE DAY OF THE MEMORIAL AND I FEEL GUILTY ABOUT THAT.)

Dreaming

My sister says she never dreams at night
there are days when I know why;
those possibilities within her sight,
with no way of coming true.
Some things just don't get through
into this world , although they try.

-from Rosemary by Suzanne Vega

I think some things are coming through into this world. I think they tried so hard they had to break their way through. My head got a little broken in the process but the damage maybe gave me a different kind of sight. It is letting me see new possibilities.

Dreaming is not verboten anymore.

CAREFUL! careful

Peter Chadwick, a doctor and researcher of the mind lost his when he was younger. He recovered and wrote an article about it.

I was stood in the middle of a mountain of paper on the first day when a secretary said "You've got a job for life there!" I replied suddenly and loudly with "I know!!" Immediately, everyone in the office froze and looked at me with wide eyes. I knew at that moment that (as usual) it was not quite the right thing to say. I should have smiled perhaps and said more softly "Yes, it looks a bit of a job, I'll do my best for you" but "I know!!" was just that tiny bit aggressive, overassertive, perhaps a bit presumptious, and a bit impulsive. It was "sort of OK," but (as ever) it just was not quite right.

article

This was the day before he spun into madness.

How bad is it that I feel this way every day? The tiny tightrope line between psychosis and remembering to use appropriate social responses is where I keep thinking I am walking.

My daily mantra for morning meditation (which I came up with last week way before I read this article) is: Today I will speak to others and myself slowly and with patience.

Found via Mind Hacks one of my new favorite daily reads.

It is nearly a year!

I mentioned to Melissa C. that I wanted to have a party to celebrate the one year anniversary of my brain surgery and she thought it sounded weird. I suppose it does but don't we celebrate the milestones in our life? How about the one year anniversary of the day I could have died but I didn't? Or how about one year ago, a bunch of people helped me make it through a rough time and I want to say thank you by inviting you all to dinner.

I am in a good place right now because even though I am still having problems with my memory, keeping track of time, writing on the board while trying to explain a concept, concentrating, effectively carrying out any plan, or writing a minimal TO-DO list in under 45 minutes, things are looking up. I met Jason C. and he reminded me of the importance of gratitude. My principal is finally beginning to understand that the problems I am experiencing are not as a result of my unrealistically high expectations for myself nor due to some emotional breakdown people perceive me as having. At Melissa C's suggestion, I found a benign brain tumor support group. They laughed as I described my frustrations over the past year, not out of ridicule, but recognition.
"I feel guilty complaining when I am lucky to be alive."
"I do not really want to hear how great I look."
"The over sixties all tell me none of them remember a thing either. And did you lose your memory overnight when you had brain surgery at 44?"
"Why do people think it is reassuring to hear, 'Well, you're still smarter than most people.'"
"Don't you think the pressure is causing those symptoms? I think you are just depressed."

I AM NOT DEPRESSED! I love life! I love laughing and talking with my daughter! I love my husband and family! I love knitting and painting and sewing and math! I love crossword puzzles and fixing things! I love the beach and my dog and cereal and helping kids learn to love math as much as I do! I love looking at beautiful art! I love wearing clothes that are different from what everyone else wears! I love coming up with creative ideas and inventing things!

So I think it is okay to celebrate. I will celebrate life and the gift that we all have to have it!