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.

Why blog?

It's been awhile since my last post. I write when I get this feeling that I have something I must say. Maybe, I have a moment of clarity, the Aha! moment when sense making happens. More likely, I write when I am in the throws of confusion and I seek some clarity.

I started this blog to keep friends and family appraised of my progress from the time I was diagnosed with a bleeding cavernous angioma. Besides my immediate family, I was not sure who else was reading. I told one teacher, she had taken me to the E.R. in the middle of the school day, and she did not pass on the message to my colleagues. My good friend Joh Kawano told me months later that she had guarded the existence of my blog like a secret. "I'm not sure she wants you to know," he was told.

Of course I wanted him to know! If I didn't want anyone to know what I was thinking or feeling I would not write it in a public place where anyone in the world can read it. That was the whole point of it, interested people could read it and find out what was going on. Everything happened so fast after my diagnosis. I had my first symptoms in school while I was teaching, a sudden headache and numbness spreading down the side of my face. It was days before I went to the doctor because I was the opposite of a hypochondriac. Then the delay waiting for approval to get an MRI as my symptoms got worse. Once the photo evidence appeared an angiogram to find out if the bleeding had stopped, we got opinions and second opinions about the surgery, and so on.

I continued writing after the surgery because I could express myself more clearly in writing than in speaking. At one point after I went back to work, in one of the many meetings that were called to address my issues, that same teacher (who had become my administrator at that point) said I could be very articulate or stumbling and bumbling over words. Writing helps me make sense of my experience.

Over the years, different feelings have come up when I found out who was or was not reading my blog. A couple of readers I with whom I was in communication turned out to be people who knew my father. It freaked me out a little that they had not told me. My family and a few of my work friends continued to read every blog post and encouraged me to keep writing. At the same time, people I considered my closest and dearest friends revealed that they had not really ever read it. Why would the people I see every day have more interest than the people I see less frequently? When things were going south at work, I was ordered to take down my blog. "A parent had complained," was the reason I was given.

Sometimes when I meet someone new, in the brain injury community or not, he or she expresses interest in my story. Rather than go into all the details, I refer them to my blog after a short summary. I figure that I transfer the power by giving access to the information. You may actively control the degree and quantity of information you get, as opposed to passively listening to potentially more or less that you want.

Recently I reconnected to a couple of my former students who are now in their late 20's. Both women revealed that they had seen and read my blog. One told me that she was concerned that I might not want to know she was reading or hear from me through my blog. The other was concerned that she might be violating my privacy. Both positions surprised me. If there was anyone that I did not want to read my blog, I would not post it on the Internet where the whole world can see it. I would love to know who is reading and I would love to hear from former students. My life or at least this aspect of it is an open book.

Two more things before I close, I will not put ads on my blog. I am not writing to make money and have no aspirations of being discovered (although it would be really cool if what I write was actually helpful or universally appealing). Secondly, I do not ever want to become the kind of blogger who writes out of a sense of obligation or attempts to cover specific aspects of brain injury. I stopped reading a couple of BI blogs because they gradually became less personal and started to sound like self-help books spouting suggestions. I don't have answers. I have a lot of questions. Writing this blog helps me articulate my pursuit of learning.

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

Thank heavens for little girls...

My little girl is absolutely, hands-down, without a doubt, no questions asked, don't even go there, cuz I'm not trying to hear that, the best thing that has happened to me! She is my single greatest achievement! She is my best friend, my pride and joy, my raison d´etre, and my baby.

Looking Back!

She has probably forgotten, but when she was in high school, she used to always tell me she wished did not have to become a grown-up. She wanted to stay my little girl so I could take care of her. I never told her that there was nothing I would have loved more. There were two reasons I kept this to myself. One was that I did not want to hold her back from being strong and independent and able to take care of herself. The second was (and this was pretty selfish of me) that she had already become a teenager so there was no turning back. Anywhere between 15 months to 12 years old would have been cool. After that it was kind of like living with my wonderful mature and responsible adolescent daughter who occasionally, and with no warning, became possessed by a stranger.

Don't get me wrong. Most of the time she was awesome. We shared great conversation, jokes, walks, TV shows, vacations, clothes, and everything. We could practically read each others' minds. We kicked ass as a team in Outburst or the celebrity game because we had so many inside jokes. She did my make-up for me. She baked yummy surprises for me. She worked hard in school without being nagged and put up with my competitive need to prove she was the smartest person at her school. (I mean seriously when you are that close to a perfect score on the SAT, why didn't she let me spend $1000 bucks for a tutor? C'mon, bragging rights.)

The hard parts were when she got angry or upset or cried for reasons I could not understand. It was like the first part of her life. Infants do not have any way to let you know what is bothering them. Crying covers everything. (Seriously, though this has always kind of described Sachi.) But, how was I supposed to know what was going on when her fingers were pounding on the keyboard with ferocity in response to what one of her friend's "said" in an instant message. Why was she so upset when someone erased her high score on Mine Sweeper? Or, when someone else stole her idea of wearing a tiara to school? Or, when she was getting ready to go on a "real date" with her boyfriend? Or, when a homeless lady pushed her? Okay, well that one I kind of understand.

What's so funny? Hatachi!

On Monday, she will turn 26. I cried on my 26th birthday because I thought I was supposed to know who I was by then, I mean, besides being a mom. Ha! The joke is I still don't know who I am, except for the mom part. And, it turns out that, for me, that is the best part!

Fundraiser for the BIANYC

Tomorrow our chapter is having a benefit. Every dollar of the admission will go directly to our chapter. There are a bunch of professional musicians and comedians. And then there are a couple of brave amateurs, including yours truly. I am going to perform a stand-up routine. I originally did it when I was in the grad school program variety show. It was mostly about being a teacher so I adapted it to reflect the recent changes in my life. Wish me luck!

In other news, I applied for SSDI and was approved in like 3 weeks. It is a relief but also depressing. It is much like going through menopause (sorry to my squeamish readers) in that with acceptance comes resignation. There is the gift of no more visits from my monthly friend wreaking havoc on my mood. The flip side is a confirmation that my body can no longer conceive a child. It is like the official stamp saying YOU ARE OLD!

Back to the fundraiser.

If you happen to be in the New York City area, please come and join us. I should be on some time between 2 and 3. Sachi will perform too. Here are the deets:

BENEFIT CONCERT 

MUSIC! POETRY! STAND‐UP COMEDY!  

featuring  

King DaviD  Kid Dizzy 

SIMONE ELLOVE KING  NEGROS AMERICANOS 

Yippie Museum Café 

9 Bleecker Street 

Saturday, June 16th 

 NOON to 5:30 

$10 donation at the door 

Drop in anytime, stay as long as you like 

All proceeds benefit the 

New York City Chapter of the 

Brain Injury Association of New York State 

More interpretations of what is inspirational

As I ponder this subject, my ideas begin to crystallize. Picture rock candy forming on a string as the water evaporates. Maybe not.

Maybe it is more like my ideas are becoming purified like water through a Brita filter.

What is it called when something goes from opaque to translucent to transparent? I think that is the process I mean. My concept of inspiration is becoming clearer or at least easier to articulate.

April 26th, 2002 my brother Tim died. This is an excerpt from my words at his memorial:

            When we were kids there was a huge snowstorm in New York one winter. The schools were closed and Matt and Tim and I went to the park together. Matthew, always the adventurous one, convinced us to jump from the high brick wall separating the different levels of Riverside Park. He said the snow was so deep it would catch us. It would be soft and fluffy when we landed. We sat on the wall and looked down and it seemed much too far. Tears started to run down Tim’s face. Matt said let’s jump and he did landing in a roll and laughing. By then Tim was really crying. I knew I had to jump next or I would lose my nerve. My foot got caught in a vine and I fell head first. (Yikes, another blow to the head.) Still I landed okay although much harder than I had expected. From down below we egged Tim on, “JUMP! JUMP!” we shouted over his wails. Trembling and sobbing, he finally did. Tim's tears froze on his face and we all laughed together. Years later I realized that he was the bravest one of all of us because real bravery is to do what you are afraid to do. 

I think that is why I do not find inspiration in portraits of smiling brain-injured people. It is not because I do not think they should be smiling. It is because for the most part, the ones who are smiling were smiling even before the injury. 

Far more inspirational is the person who never really smiled, even when she had plenty to smile about and now with a brain-injury must fight so hard to smile. 

The face I see has an expression of determination not resignation, dried tear stains, and a smile revealing a glint of arch humor. It is a face that is mourning the loss of the old self while embracing rebirth. Not unlike a baby, entering the world and leaving the safety of the womb, crying at the outrage. Those cries, gasps, screams reveal the struggle but also serve the purpose of allowing oxygen to enter the blood stream. 

I shake my fist at the reality while I struggle for air. The face of brain injury that inspires me is the one that reflects survival. I do not need a face that says: I am happy even with a brain injury. I want a face that says: 

I AM even with a brain injury.

(Maybe, I do kind of want to be an inspiration, just the way I am.)