Sunday, July 10, 2016

Quilting After Brain Injury

My brain injury had a very strange side effect. I could not stop making things. I became an artist because I couldn't follow directions anymore. Because I was left with language processing problems, sequencing and memory deficits, impulsivity, and poor organizational abilities, using a pattern was virtually impossible.

My process is haphazard. For art, this seems to work well. I spend a lot of time looking at pretty pictures and fabrics. I use my iPhone to take tons of photos of stuff I see that looks cool. I play with my materials creating odd textures or just cutting fabric and sewing it together.

For years I have been promising my daughter I would make her a quilt from her old t-shirts. I think she gave up hope a long time ago. She told me once that she didn't think there really was a t-shirt quilt, that it was just something I said to get her t-shirts and throw them in the trash. It's like that farm where parents say that pets go to because they don't want the kids to know the dog died, she said.

Well, it was not a lie. I saved them and for her 30th birthday (What!) I made a quilt. But it was REALLY hard. During the whole sewing process, I realized that despite all my deficits, I still have one of the best qualities anyone can have. IMHO. Perseverance! Stick-to-it-iveness! Stubborn determination!

I am writing this before I even finish the quilt because I want to remember what I did. I want to remember not what I did right, but what I did wrong. I want to record my problem solving method.

So here's how I did it"
  • spent a lot of time researching how to make a t-shirt quilt
  • quickly rejected the idea of trying to cut rectangles and match seams 
  • eventually rejected all methods I could find because they involved measuring, writing, and planning
  • decided to wing it
  • chose batting (fleece) with iron-on adhesive on one side so I could iron the pieces as I went along
  • arranged the cut up t-shirt pieces on wrong side of the fleece so I had to pin down all the pieces
  • picked the whole thing and carried it to the sewing machine
  • tried to sew pinned pieces to fleece 
  • stopped after one row of stitching because the pieces were curling up and shifting around
  • moved to the couch and tacked down all pieces by hand with long strands of thread
  • noticed there were places where the pieces did not meet
  • took out all the pins and machine sewed all the pieces down despite gaps
  • hand sewed patches over the gaps
  • pinned the backing onto the quilt with safety pins (because I forgot AGAIN that there was iron-on adhesive)
  • watched a video about free motion stippling a quilt
  • started free motion quilting from one side of the quilt to the other in rows because that was what the video recommended
  • did one row that way and then forgot what I was doing
  • remembered rule about quilting from the center so I did that
  • alternated between the two methods in a chaotic fashion
  • sewed with the t-shirt side down so I could see the stitches but broke a needle when it hit a rhinestone
  • moved all the safety pins to the top side so I could see any rhinestones
  • started quilting with the top up but could not tell where I had already quilted since the stitch I used to sew down the patches looks very similar to the quilting
  • remembered that there was iron on adhesive on the fleece so I didn't need pins
  • realized how many times I needed to switch gears
  • marveled at the resiliency I've developed and decided to blog about the process
  • ironed on the back and continued to quilt
I'm back to finish this post. I couldn't publish until after my daughter's birthday. I finished the whole quilt in a week and on July 2nd she was surprised and happy to see her favorite shirts from 10-20 years ago.
This is a terrible photo. The quilt looks very cool in person.

Friday, June 17, 2016

Grieving again

I'm in mourning again. Unlike being forced to leave my job which was a personal, this loss was not personal.

Over the last two years, I developed a routine. I traveled by subway three times a week to a bright sunny studio to work side by side with other artists. Continued participation was contingent upon my prescience at one session a week but I went to all three as often as I could. It felt like I had a job. It gave me purpose. But is was work that I could do. I could make whatever I wanted and leave whenever I wanted. Cleaning up on time was always a struggle but I got through it. Social interactions were minimal and I often wore headphones to drown out noises that grated on my nerves. It was the ideal environment for my specific disability. I don't want  to describe (although I know I have throughout this blog) the difficulties I encounter interacting with other people.

I admit that at first I clashed with the director. He threatened to kick me out more than once but I grew to respect and appreciate him. I wasn't friendly with everyone there but little by little I got to know them. I learned people's names and we said hello to each other. There were a few of people there I loved being with and we laughed a lot. I am not good at having friends and I'm okay with that now so our relationship was limited to the time we had there. The consistency of traveling to a place and creating next to other artists fulfilled so many of my needs. I think everyone needs to feel accepted, included, and valued.

Last month HAI closed abruptly. We had one day's notice and a window of a couple of hours to go in and collect our supplies and artwork. There was no time to say goodbye or ask questions about what was going on. It was devastating. New York Times Article

Yesterday we a had a "reunion" of sorts. Our leader said it was a living art piece. We got together at a small gallery studio space in Brooklyn. (A terrifyingly unfamiliar and journey by subway and foot). We sketched and then we talked and then we sketched some more. I cried, really cried for the first time since the closure. I hadn't realized how much it hurt. I expressed what I haven't been able to tell my husband or daughter or even my therapist what it means not to have HAI in my life. We will meet again but it will probably never be the same. I am sad.

(Just an aside, I don't "need" to talk about it nor do I want consoling words to cheer me up. The cure for what ails me since my brain injury is mostly to be left alone. This doesn't include my daughter who is my love and my life.)

Monday, August 10, 2015

Glass half full

I'm not a pessimist. I'm a realist.

The words all pessimist find themselves saying when confronted by those damned, delusional optimists. All systems eventually turn to chaos. The slightest deviation and then ...

I kept going back to work. The door to my classroom got smaller and smaller. Sometimes it was boarded up, planks nailed across the door frame. The threshold taunting me through a peephole. I could not get in even when I tried to crawl, squeezing into a space no bigger than a doggie door.

There were more teachers in my classroom every day. I would get there and there would be three or four teaching my class. I tried to get some one's attention from the hall. Hey, I gestured, I'm supposed to be in there. My plea was met with shrugged shoulders and words mouthed. "There's nothing I can do. Look around."

"Come out and let me explain," I pleaded.

She finally acquiesced. I didn't even know her name. She started with "I never even know when you are coming in." We sat down and I tried to explain.

I was a good teacher. Really good, I think. I loved the kids. I knew the material inside and out. I could anticipate problems before they happened. I could hear three kids talking at the same time... while I was on the phone.

"But what did you do?" she asked.

Everything. Art. We drew cartoons. We painted watercolors. We wrote newspapers. We rapped. We did skits. We made videos. We wrapped objects in 1 inch square grid paper to measure surface area. We shopped. We bought stocks and balanced checking accounts. We raced through Ancient Greece. We made snowmen to measure spheres.

"That's what they did. What did you do? Wait, let me put it this way. What is your background?"

That doesn't matter. I taught Core and 2 sections of math. I ran the math club during free periods and before school. I coached the softball team after school and on days we didn't have practice, I tutored kids individually. I sewed costumes for the plays on the weekends and I baked each student a personalized cookie on Valentine's Day.

"So you basically had no life outside of school?"

No, I did. I was a single mom, devoted to my daughter. I ran at the gym. I made delicious dinners. I was in a book club. I played darts in a dart league. 
And then it slipped away. President's Day weekend I went away on a girls' trip with my friends. We drove up to Stowe to ski and snowboard. Marissa Berber, Caroline Boyle, Caryn Duffy, Maddie Franklin. They were my friends. I had friends. There was some drama, a few disagreements and tears but I wasn't involved (for a change). It was so fun until I started to get a really bad headache.

A small leak changes everything. And now it is a glass half full, a glass half full of holes.

Narrator's voice: Next week on Aly's Angioma

"Why you want to be in a place you don't even fit in?" and other tales from the subway


Friday, July 24, 2015

The graveyards are full of indispensable men.

I guess this is supposed to mean don't live under the mistaken impression that you cannot be replaced; that without your contribution, things will not function.

Okay. Right. I get that. I'm fine with being forgotten. I'm fine with passing on and allowing the planet to fill with new people. But while I am here, I do not think there is anything wrong with trying to make the most valuable contribution that I can.

The headmaster at the school where I used to work, quoted this to me on more than one occasion. It upset me. As a business model, it's great. You don't want the success of your organization to rely on any one small part. But should you tell your employees that? Why? So they don't feel too important? So they don't strive to make a unique contribution? It sounds like: Remember! You are merely a cog in a machine! We can find a replacement for that piece any time!

What the fuck! I was disgusted that my boss said that to me. I wasn't trying to stand out or patent some secret teaching method only I could do. I was doing my fucking best, constantly striving to improve. I will always do this! I am a problem solver. It's what I do. As a teacher, my role was to bring out the best in each individual student. I asked myself how do I most effectively communicate the information he or she needs. I want to help them develop the skills and tools they will need and use for years to come. Am I the only one who can do that? No. Did I want to do an awesome job at it? Yes. Why? Because I want to grow and learn and be effective for my entire life? I am not a sit back and smell the roses type.

I feel pretty good about that today. I feel unique and special and valuable. I've thought a lot about what Dr. Soghoian said to me that day in his office. Although he is certainly correct that everyone can be replaced, it doesn't need to be said. Perhaps it is my cognitive distortion (and please, by all means, feel free to correct me or challenge me to a debate), but the message that those words conveyed to my ears were stop trying to be so good at what you do, you're not special.

I will never lie down and accept that. There are times when that message does run through my head on a loop, an endless tape of criticism, self-loathing, and defeat. That is depression and suicide seems like the only relief. Today I am not feeling that way. Today, even with my disability, I feel capable of making a contribution. I intend to go to my grave doing my best, endeavoring to improve myself, and enjoying the creative process of generating unique solutions. Actually, I'm not even planning to go to a grave. My body will go to a medical school student so even in death someone may learn from me.

Monday, March 23, 2015

Grateful to be alive

 I still miss my math teaching days. I ran into four sets of parents and one former student this weekend. The children are all brilliant successful young adults now. I was so fortunate to be there to encourage and witness their growth. Now I coax life and potential into inanimate objects. Life is exciting again.

An interview about me and my artwork came out yesterday. I share it here in lieu of a longer post.

artist-spotlight-alyson-vega


Monday, March 2, 2015

Anniversary

Yesterday was the Fourth Anniversary of my break from the school where I taught for 22 years. There are still aspects of the life I left behind that I miss. I loved teaching math because there are so many ways to reach the same goal. Given one problem, each student might reach a solution through a variety of methods. I used to say learning math was like building a set of tools and then recognizing when each  is useful.

Oh, this kind of problem. I think I will take out my Venn Diagrams. Or perhaps I can just write an expression. Then I will use fraction division.

If you have the tools at the ready, their usefulness becomes apparent.

Now, not all students enjoy the freedom of selecting their own method or "tools." I asked them frequently. There two extremes. At one end there were students who just wanted to know how to do the problem in front of them. At the other were the students who refused to proceed until they understood why a specific set of steps resulted in a desired result. The show-me-hows and the tell-me-whys. I loved teaching both kinds and everyone in between because they all taught me something new and that made my job more interesting and enjoyable and even easier as time went on.

And then there were the kids wanted nothing more than problems. Just give me a challenge. The Math Olympiad. The MathCounts team. My after school group. This was the most fun because I could identify with them. Did you ever try to do a crossword puzzle and have someone look over your shoulder and tell you an answer? I hate that. I want the satisfaction of doing it myself. That's what these kids were like. Hungry, curious, excited, and then even when out of frustration they were forced to give up, they wanted nothing more than to hear how anyone else did it. Their conversations with each other filled with half-finished sentences and partial thoughts.

I just put all the evens... Oh my god! What a good idea.

I realized if there were 10 ones, and 9 zeroes... Yes, then you could just multiply those.

I still love math puzzles. So much!

This is how I am with art now. I have an idea for something I want to make and then I try everything i can to get there. I don't want anyone to tell me how to make or do anything. I want to figure it out myself. I feel very fortunate to have this particular struggle.

Wednesday, November 5, 2014

I have to write because there is noise in my head

and it prevents me from doing anything else. This blog has served as a release valve for the din in my brain. Words and sounds repeating and ricocheting off the sides of my skull like a a squash ball being slammed against the walls, the floor, the ceiling of the court.

I woke up sad and angry and ranting this morning. Filled with hatred towards former friends who abandoned me. Some days I can proceed in ignorant bliss, enjoying the life i am building now. Every once in a while (less and less as time goes by) I am struck by how little sense I can glean from my environment.

The words I speak do not have the meaning I intend. The responses I hear do not match what I thought I said. I demand clarity because I am sure if I get the response I was expecting it will validate that I am making sense. It feels like I am hitting a tennis ball over the net and anyone who has played knows the feeling. The ball sometimes comes back exactly the way you were expecting and sometimes surprises you going faster or beyond your reach or with a crazy spin. That is the nature of the game. I used to love that about conversations (not so much about tennis since I was pretty bad at it. Big surprise since I had a growth lodged against my cerebellum). Post surgery talking to people feels like I hit a tennis ball over the net and a football comes back or an egg or a helium balloon that just floats away or sometimes someone just walks around from the other side and gives me back the ball. I want to scream (and sometimes I do), "Just hit the TENNIS BALL back to me like I am expecting. Why is that so hard?" I try again after explaining and when I still don't get back what I am expecting, it is frustrating. From the other side of the net ( I can only imagine) they are tapping the ball back so they don't understand why I am upset. Or perhaps they are wondering why I threw a bowling ball at them. Inevitably they think I am being combative or bizarre and they walk off the court saying, "I don't want to fight."

I want to find forgiveness. I know I will be free when I can. It is hard though. I am not sure how many people there are who can relate to the way I grew up. My childhood was chaos. Physical, verbal, psychological abuse combined with poverty instilled in me a strong survival instinct. Self-preservation at all costs. Get what you can and then get out of the way. Empathy is a luxury for people with plenty. I imagine if you are a child growing up loved and cared for, fed and warm, then you have room to develop good will for others. I heard that many people in the helping professions come from abusive households. I know it was a huge reason I taught and became a mother. I knew I give more than what I had. I wanted to make a difference in a child's life by letting her know she is important and heard. I love children and animals. I hate the people who were once my friends and now treat me worse than if I had died.

I will stop now because my brain is beginning to go back to normal. The volume is going down in there and I can think again. It's been quite awhile since I've written. That is a good thing. Goodbye for now. I will write again when I have no choice.

Monday, June 30, 2014

My 30th college reunion

I was planning to go. I snatched up one of the last hotel reservations near campus. I was part of a big email exchange in which we all promised to be there in 2014.

That was back in 2012. A friend of ours had just died. I really wanted to go to the funeral but I wasn't comfortable traveling by myself yet. The other New Yorker went without telling me. There were pictures and stories and discussions of not feeling guilty for not being more in touch. All of these conveyed through online channels not specifically directed at me.

I don't want people to feel guilty for not being in touch. I want them to be in touch. I had brain surgery and I don't remember if they called or wrote or anything. I was diagnosed with a brain injury and they definitely did not call or email or anything. I lost my job, I had a nervous breakdown, I wound up in the hospital, I wanted to die. Who calls after that?

I crawl back to the land of the living a little bit every day. I peek over the edge of the hole I fell into and I see people out there doing what I once did. I wave to my friends. "Hey can I play too?" I guess it's pretty easy to pretend they can't hear me. It's noisy with each person having their own family now, husbands, wives, kids. At 52, they're at the heights of their careers so their jobs are hard and filled with even more responsibility. Plus there's dirt on my face and my hair is messy.

That's the part that sucks. I would get more attention, more company, more phone calls returned, more responses to my invitations, if I had died and it was my funeral.

How much should I keep asking to be included before I give up? I'm getting pretty close. I don't want to go back, spend a ton of money, drag my hubby along, only to feel like a pariah. If the friendships are dead, I need to begin to mourn.

The dastardly thing about my brain since the injury is that I can't tell if my perceptions are real. I get very paranoid and I misinterpret situations all the time. I forget about boundaries and say things I probably shouldn't.

I was in the store last week. There was one line to pay and three registers. I was next when suddenly the cashier said, "Form three lines." This meant everyone walked around me to be the front of the other two lines. "This is bullshit," I said to no one in particular. "How's this fair? Can't we at least honor the order we were in? I hate this shit." Then I shut up and waited my turn but I was poised to mow down anybody who thought they were going before me. A woman was staring at me. I glared at her and said "What? Do you have a problem?" She laughed and turned to her friend muttering that she wasn't the one with the problem I was. I honestly felt like saying, "I may have the problem but it is about to become your problem because I am fucking crazy. You have no idea what the fuck I might do." I did some mindful breathing and imagined how it would feel if I didn't care who was next. It brought me back and then I was next so I paid and became normal again.

Would you want me as a friend? Maybe not. God bless the friends I do have! I am so grateful that there are people who love me. I am so grateful that I am still capable of learning how to show them that I love them too.

I think I'll save my money and skip the reunion.

Thursday, May 15, 2014

In sleep I dream I am a different me

I stay in bed because I can't fight the feeling that there is no reason to get up. I miss being needed so profoundly it hurts. I dream about my students or about meeting other teachers and telling them I don't teach anymore.

In my job, every day I faced a brand new challenge. How do I meet the needs of sixty plus kids today? How do I transfer mathematical information and skills from my mind to theirs? Each of them with such different ways of receiving that knowledge and some even resisting, insisting they don't want it, can't get it, won't hear it. I miss the rush and the thrill that I felt when I succeeded.

To the world you may be only one person but to one person you may be the world. I know I am important to my loved ones, my daughter, my family, my husband, my friends. It doesn't change the fact that I lack a daily purpose.

Last night on Criminal Minds another wonderful quote. This time a quoted quote.

“You must give up the life you planned in order to have the life that is waiting for you.”  - Joseph Campbell

I am trying so hard. I want to let go. I feel like I have been mourning too long. Grieving this loss is holding me back and weighing me down. Anchoring me to my bed, to sleep, to dream of what once was.

Saturday, April 26, 2014

Who am I? No,who do you think I am?

I am in the midst of an identity crisis. Today is the 7th anniversary of my craniotomy. Surgeons removed a benign brain tumor, an irregular cluster of blood vessels called an angioma from the left peduncle, cerebellar region of my brain. The growth was about 60% in my brain stem and it was bleeding. Leaving it there would likely have lead to paralysis or sudden death. I am alive and to survive, I must rebuild my fractured sense of self.

I had a discussion with my sister about a year ago regarding my injury, I described it as "losing the sister you had and getting a whole different sister."

She said that is not her experience. In her words, that "... is not my view of you - you may feel like a different sister, but to me you are a continuation of your previous self, with changes."

If I am the same person but with changes, then what does "self" mean? How can I still be me when I do things that I never would have done before? My behavior has been described to me by family and friends, people I trust, and upon hearing it, I recoil. I did that? Yes. But was that me?

Accepting that I am not a new person, is difficult to fathom. How can I still be me "but with changes," when reality is so markedly, sharply different? It strikes me that a crucial part of being understood is having others accept my sense of self. If my reality is not accepted by others, then I am left to believe it is false.

I act, then my environment and the people in it react. My brain interprets those reactions and sends a message to ME. I have been told by my doctor that those messages are false. My brain is misinterpreting language, actions, intentions, and social cues. Herein lies a crucial component of the new me. I need to be reminded that what I am experiencing is not necessarily what is being projected.

I am writing a brief bio for my 30th college reunion and this is what I have so far:
My daughter Sachi Ezura, Harvard College class of 2008, is the light and love of my life. She is the one constant I have and a beacon of hope for the future. In the past five years I've been battling severe depression. My 22 year teaching career ended abruptly in 2011 when the reality of my brain injury collided with my illusion of competence. I struggle to rebuild my fractured sense of self every day. Sewing keeps me sane.
I went to Harvard on a complete scholarship and to my mind, I squandered a great opportunity to better myself. I started off an honor student, pre-med and goal oriented. By the end I was nearly failing out. Crippling depression and anxiety often made it hard for me to leave my dorm room. I beat myself up for years that I didn't do better. My career as a teacher made forgiveness possible. I loved teaching and I was good at it. It felt natural, like breathing. It was who I was. As in most things I do, I endeavored to be the best, and the feedback I got was affirming. My students loved me. Their parents loved me. As a result, I loved me. My psychological need to be loved by many who did not know me (at least not all of me) was being met.

Now, I have only a handful of people in my life and it is more than I can handle. The frequent misunderstandings render me defeated. The environment is a reflection of me and I do not like what I see.

I know that this too shall pass. I pray to have gratitude for what life presents. I will keep going, working to forgive myself. I look forward to the day when I feel whole again, when I know who I am, and I love that person again.