RCK

In 1974, 3 of the 4 kids in my family were kicked out of the Children's Community Workshop School. Suz was already at Performing Arts by then. The rest of us had to leave because the school asked for tuition. It had been free but I guess it just wasn't working without funds from the parents. We contributed in other ways, the food co-op, the storefront thrift shop, but I guess it wasn't enough.
I remember getting up at 4 o'clock in the morning and driving in a truck to Hunt's Point (quite an adventure for a 10 year old) to buy wholesale produce. One of the few times I ever saw my mom cry was when an old lady tried to barter some shopping bags for a block of the cheddar cheese.
The thrift store was probably where I developed my love of old clothes, that musty smell of moth balls, damp wool, exotic laundry soaps. My mom liked to volunteer to sort the new donations which gave us first pick and also meant maybe some items never actually ended up being donated. Hmmm. I am beginning to see our "contribution" in a slightly different light.

My favorite thrift store find was a pair of denim shorts in a Peter Max print:

I loved them so much that when I outgrew them, I sewed the legs closed and attached a handle to make it a bag.

I was diagnosed with a TBI in summer 2008. In Feb 2007, doctor's discovered I had a cavernous angioma nearly embedded in my brainstem after I had a bleed. I had surgery 2 months later and the doctor's were very excited with the results. I went back to work 6 months later full time as a sixth grade math teacher. Although during my recovery time I thought things were a little different work revealed major deficits. During my search for answers, my parents reminded me that I had suffered a serious concussion when I was in sixth grade, over 35 years earlier. 

During a game of RCK (RUN CATCH KISS), I was desperately running away from Fernando a 14 year-old boy in my class. There was no way he was going to catch me because I really, really did not want to kiss him. I was running down a slide (brilliant) in a playground and I tripped at the bottom flying forward and bumping my left temple on a cement turtle. I do not know how long I was unconscious. There was little supervision in the yard of my overcrowded public school. I had only been at the school a couple of months but my regular teacher was also absent so I spent the afternoon drifting in and out of sleep on a couch in the classroom next door. When my father picked me up I vomited and then he brought me to the emergency room. They made my parents wake me up every hour that night and look out for any liquid from my nose or ears. That is all I remember. Then I went through puberty so if there were personality changes who could tell. My father who remembered the incident best died in August 2008 and with him I lost the chance to learn any other significant details. My search for medical records was futile because of the amount of time that has passed.


It is mind-boggling to me that some of the obstacles that have plagued me my whole life might have stemmed from this. I have always been extremely impulsive physically, acting in dangerous situations. This resulted in many more injuries. Despite my lack of coordination, I felt compelled to climb walls if it was a short cut, make off-balance lunges on tennis courts, and run and trip while trying to catch subways. More sticthes, bumps and bruises to my head. My husband used to call me Action Aly before the surgery (well, he still does sometimes but then insists I show restraint).

New Year's Resolutions: Get Real!

Last year I remembered my goals all year because of the nmeomonic device ABC. Attention, Behavior, and ?? I am not sure. I have to find the piece of paper. I know I should have given it to S at the BI women's support group but I think I was still a little too paranoid at that time. Plus I wasn't finished (Am I ever?) writing it. I wanted it to be better.

So yesterday, we met again. A new year. New resolutions. A is for Attention - better. Oh I suddenly remembered what C stood for and I am pleased to say it is better too. Consideration. Behavior - much better thanks to Y, J, and T at the STEPS program. B is for Behavior, a part of the emotional cycle we worked on and understanding it in that context helped me feel much more in control. C is for Consideration - better. Attention helps with that. It's amazing what you hear when you actually listen to people. Still working on Attention - maybe too much on the wrong stuff.

New resolutions. Building, repairing, restoring my relationships at work, with family, with friends. Realizing my potential as an educator - graduate school? developing individualized math programs? not basing my self-esteem on the approval of others. Attention - still on there, I have to be on time, write things down, be aware of my physical needs and emotional state, Maximizing the use of my time, efficiency, minimizing my use of space, letting go of trash and shopping, setting limits for myself and sticking to them.

My new acronym:

REAL = relationships, education, attention, limits.

Am I a detail oriented person?

     I am getting ready to finish my TBI rehab program. I only have a week left. It is amazing how much I have learned and yet it is the knowledge of what I need to learn that is the most valuable. When I awoke this morning, I remembered the dream I was just having. I had just won 1.3 million dollars in a lottery or contest that had been televised the night before. In my dream, I was in the lobby on my way to school and someone congratulated me. After a moment's hesitation, I remembered why and I started to dance around the lobby with joy. I know, I know, I am so lucky. What should I do? Should I sell my apartment? Should I quit my job? I was aware that I could not live on that money for long but it made the possibilities and prospects for life seem limitless and open and I felt great childlike joy.
     As I prepare to interview someone to be my fifth assistant in two years, many questions come to mind. How do I describe this job accurately? How can I make sure I screen for the necessary skills? What do I need someone else to do, so I can do my job? Yesterday I asked my advisor in the TBI program to help me. I said I needed a detail oriented person and Y said, "You are a detail oriented person. You need someone to help you see the big picture."
     I thought about this a lot. Was I like this before the stroke? before the accident? Always? No, I don't think so. Big picture, I think I was pretty good at. A very limited big picture that barely extended below 96th Street but still not just the details. I was not really detail oriented either. I held onto the details pretty well but maybe not always giving them as much value as I should have. I could remember the date Sachi was to start camp and the date of her return flight from her dad's in Japan but it did not occur to me that they were the same date.
     I always way overprepared for lessons but then I was set with what to do for awhile. Where did I put the materials was often a question? I always had a kid in the class who had eagle eyes and could locate what I needed. I developed systems to compensate for my disorganization. Specific compartments to hold what I had to give out, collect, take home, grade. But usually I ended up with everything in a great big pile. My brain was like a giant bucket full of sand. I could carry a lot and even when I overfilled it, the stuff that spilled off the top was usually (or hopefully) insignificant and minor. I could improvise with all that sand. Sand castles one day, examine the grains under a microscope the next.
     Since my surgery, I have felt that there was a big hole in the bucket. I went back to work and tried to do what I always did which was to just fill up the bucket. No matter how much I put in, it was never enough. It didn't feel full but I didn't know where the sand was going. I would leave work feeling vaguely concerned that I had not done enough and trail sand all the way home. I kept getting back to school the next day and looking into the bucket and realizing that it was empty.
     The reason I feel like I need a detail oriented person to assist me is because that is what I feel I have no control over. If someone could handle that part for me, I could do the big picture which is teach. Maybe I am wrong. I just get the feeling that I am bogged in details because they all seem equally important and slippery and transient.
     I love math and I love children. I know that when I am in a classroom with a group of children, I can figure out what they need to learn and how to make it fun. This is not enough though. Is there someone who can help me?

Multicultural Gingerbread People Sweaters

As I was putting the finishing touches on my favorite Christmas sweaters, I noticed that I was calling them multi-cultural gingerbread cookies as opposed to people of color. You may recall from my previous post http://countdown2brainsurgery.blogspot.com/2007/09/how-i-got-my-first-doll.html that my dad disliked that phrase.

The cookies, like people, are not really different colors. The are shades or hues of the same color.

Wouldn't "People of Shades" sound cool? Picture Samuel L. Jackson or Will Smith in Men in Black.

 Ultimately, Luke Visconti has a good point when he writes "unless the goal is to endlessly argue semantics, it's more useful to use a common phrase to describe people who are commonly thought of as not being white by the white majority in this country."Read More

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I AM A GIRL!

I think I have posted about this before but I just feel the need to say it again. I had a weird dream about a transitioning blond wo/man and it played out in my mind like an epiisode of Criminal Minds. At first I took it for granted that she was a she not a he, but gradually it began to dawn on me, even thugh she was so pretty and feminine... And then awake I think, "All people in my dreams are me...So? I don't see."

When I was young, 8, 9, 10, 11, 12, 13, my dad played softball and coached my brothers' baseball teams. An equal opportunity father (sometimes), he made me practice too. It was the seventies and the Feminist Movement was in full swing. I took Aiki-do for self-defense and promised my dad I would not go into a profession pigeonholed for women. I retrieved my mother's bras from the trash, hid them, and then secretly wore them stuffed to pretend I had breasts. I also learned to play ice hockey which was a great thrill. All suited up in the protective equipment, from shin guards to helmet, I realized even when I fell or threw myself in front of another player, it didn't hurt.

Softball practice with my dad was another matter. Things would always start out okay with my dad alternating between throwing at me, Tim, and Matt, but sooner or later the boys were dropped from the rotation because I could not follow the simple command of, "Stop throwing like a girl!" We were not allowed to say, "I'll try," or "I'm trying," in my family because those words automatically meant, "I am leaving myself an opening to fail." I will do it or I will not do it. Those were the choices but no one dared choose the latter. So the ball was fired at me harder and harder, the grimace on Ed's face meaner and meaner, and the words bellowed louder and louder: "STOP F*#@ING THROWING LIKE  GIRL! It only stopped when I began cowering from the ball, jumping out of the way to avoid getting hit, crying tears of defeat, or the sunset prevented any accurate analysis of my technique.

I always wanted to say, "I am a girl, a little girl, a little girl who will never be a professional athlete, so it's okay if I throw like a girl," but that would have been labeled a cop-out. Despite my tiny stature, myopic bespeckled eyes, and complete lack of coordination, I was expected to perform like a man. Not just any man, maybe Dave Winfield. When I started seventh grade in 1974, I got new sneakers. Super Pro Keds, size 1. SIZE 1. That is how small I was. I could still wear some of my Size 6x, 7, and 8 kids clothes. I was the smallest person in my class every years from K to 8. How do I know? We had to line up in size places for every transition. I led the line for graduation in 6th grade and again for 8th grade.

Now this:

http://neuroanthropology.net/2009/02/01/throwing-like-a-girls-brain/

Sweater World Here I Come

After months in the planning, my first sweaters are for sale on Etsy. Now you know why I never call you. Check it out:

http://www.etsy.com/shop/AlyVega

Shout out to my peeps:
A.R. I am thinking about you and wishing you a speedy recovery. I love you!
R.F. You have the patience of a saint!

S.E. You are my inspiration. Would I really be making these if I thought you were worried about what other people think? You wore the first one, pumpkin dumpling, cuddle bunny, and you wore it with pride! You fashion plate, trend setter!

Did you miss me?

I am turning 47 on Sunday. I have basically been thinking of that as my age for the last sixth months so nothing new there. What is so bizarre for me is the idea that if live as long as a palm reader told me I would a few weeks ago, early 90's late 80's, I am only half way through my life. I cannot imagine living the same number of years in the future as I have in the past. 47 is a lot of years. What on earth can I do with all that time?

Having a TBI and much less of a sense of time, distorts the day to day hours, but years are different. 25 years since college. I was thinking yesterday that it makes me even sadder now that I reconnected with all those people in the hopes of having friends again, and since then I have not heard from any of them. I reached out (I think) but was not invited to Ridgefield or Ann Arbor or even downtown to lower Manhattan. I know when people have small children that is the central focus of their lives. So I can sort of understand.

I ran into my friend J. yesterday. We had a falling out before my injury. I still love her so much. Her middle son said he remembered me. I probably last saw him at his 3rd or 4th bday and he is 10 now. I gave him a Grant puppet I bought at the memorial and he said he still has it and is still quite a history buff. I told him a story about a lesson I taught in the 4th grade recently.

The lesson was to learn about U.S. coins. In pairs, the students sorted 6 of the most commonly used coins these days based on characteristics of the coins. So, if the rule was silver colored, you would put the nickel, dime, quarter, and half dollar on one side and the penny and Sacajawea dollar on the other side. The kids were more creative than I expected. I figured ridged edges and smooth, monuments on back or not, small and large, evenly divisible by ten or not, and more than one group noticed left facing heads and right facing heads. In one group, one partner was truly stumped. I, too, was unable to figure out the rule. On one side was the penny and the half dollar and on the other side the remaining 4 coins. After I gave up, I was stunned to hear the rule was people who were assassinated and people who were not. History buff, I figured, but who thinks that way?

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.

The Doctor is [OUT]

After 2 years, I ended therapy with a super doc. I love her and I never really loved a therapist before. I always thought it was weird that previous therapists thought I should have any feelings for them. I barely thought about them when I was not sitting across from that chair. It would make me uncomfortable when they asked me about my feelings for them or when they got really excited that I had a dream with them in it. I suppose in some ways the therapeutic model is supposed to be a reflection of a person's real relationships and if so, I have made progress.

Why did I stop, you might wonder. I need to focus on changing my actions right now and less on the emotional background which causes certain behaviors. I am also starting intensive cognitive remediation in the Mount Sinai program soon. It comes with emotional support for people with brain injuries too. I think that is a lot to work on for now.

I will miss you, Dr. S.

I look okay though (because how you look is what matters the most, NOT!)


Photo taken of me by Sachi the night of my last session.

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.