A one-way street

This September is a big anniversary month for me. Tomorrow is my tenth wedding anniversary and in one week I turn 50. I was looking forward to this for awhile.  A couple years ago I imagined quite the celebration. In addition to being 5 years post-surgery, 2012 was the year I was to earn my master's degree.

I have been coming to terms with the fact that I did not begin my 24th year of teaching this fall, I do not have a master's degree, and that I will never teach again because I have a brain injury. I have actually been celebrating my small triumphs and feeling pretty good.

For my birthday, my dear friend L. offered to host an art exhibit in her home. I cannot tell you how moved I was by this gesture. I do not think I could have asked for a nicer gift. She has a large, gorgeous apartment in the West Village, filled with beautiful art, a full-length terrace, and tons of streaming light.
I have been excitedly gathering pieces of my art, finishing some projects, and inspired to make some new fantastic pieces.  Little by little I have schlepped stuff down to her home. Yesterday we bought some wine. It is so much more of an inconvenience for her than either of us previously envisioned. I hired people to help move her art and to help keep things neat during her party but, there is so much more to do. Her house is crowded with my pieces.

During the planning stages I knew I wanted a big party. I had a lot of friends at the school where I taught. Only a couple have kept in touch since I left. Would I invite some friends with whom I have not had contact? I received cautionary lectures from my daughter, my husband, and my cognitive therapist not to be devastated if they do not come. My TBI doctor asked me how I would feel if they said no. If it was going to upset me, maybe I should not invite them. I answered that in some ways it would be a relief. At least I would know for sure that they did not consider me friends anymore. The wondering and speculation bothered me more, I thought. It's not like I call them either.

In the end, I invited over 50 people. Saturday, we will have 22 guests. They are family, friends from the brain injury community, my daughter's friends, and a couple of pre-injury friends. In response to my "save the date" email, a few people I have not seen since I left school replied yes and said how excited they would be to see me. Gradually these turned up as no in the official RSVP to my friend's invitation. I got the final changed response today.

I am so lucky to have met friends through the Brain Injury Association of New York. I am also so lucky that my family and a couple friends stuck with me. It took a lot of work on their part to understand brain injury. Ten years ago, over 150 people came to our wedding. So many teachers and parents. In the next five years I made more friends at school. Then in 2007, blood seeped into my brain and gradually friends slipped away. "Like trying to hold water. Trying to hold sand," Bill Morrissey sang in These Cold Fingers.

The bottom line is I do not have to wonder anymore. I cannot blame myself for the loss of these friendships. The two-way street was approached and met with a DO NOT ENTER sign.

When I left that school my former assistant's parting words to me, following a tirade of my many offenses, were that my husband should be worshipped as a saint. The implication being... I think you can fill in the rest. Nasty words. I do worship my husband but it is terrifying to constantly feel like it is a great sacrifice for him to be with me. Last week I teased with my husband about his marrying an older woman and all the drawbacks. I jokingly asked why didn't you pick a younger bride. He answered seriously, "Because I love you." For all my doubts, these words woke  in me a realization.  I shared the story with my TBI doctor yesterday. I realized that I am not unlovable but in the last few years I have made it very difficult for him to love me. Dr. Silver said, "And it is not your fault."

I am going to be okay. No, I am going to be more than okay. I used to be quite popular but it came so easy that I hardly cared. Now, the people in my life are treasures. Popularity is like a soap bubble so shiny and appealing but gone, pop, just like that. My husband, my daughter, my mom, sister, brother, and my true friends are diamonds. Thank you so much for sticking with me. I love you and look forward to being with you on Saturday.

Getting better?

On August 20th I went to see my doctor. He is one of the leading brain injury physicians in the U.S. We had a great session. I told him about my vacation experience and how confident I have been feeling. We talked about how much I have been learning from my new cognitive therapist. The doc pointed out that while I was seeing my previous cognitive therapist, I was still working. He pointed out that if getting through the airport was so difficult, there was no way I was going to get better while I was working.

It left me thinking about the phrase "get better." I am getting better. I have more self-control during non-stressful situations. My coping strategies have improved. Acceptance of my leaky brain is improving my relationships due to increased trust and fewer arguments. As I floated down the street, I allowed myself a little fantasy. What if I get so much better that I can teach again? It's true that I donated all of my math and gifted education books to a good cause. No matter because I would be walking into a new situation where I would need to be told what to teach. It's also true that I dropped out of my master's program. Also, not a problem since I could use the credits towards certification in New York.

cloudy vision

Then I imagined getting through one single 45 minute class and I my stomach cramped up. Some aspects of my brain injury are pervasive. I'm not fatalistic but I need to take it slowly. I did walk around in the lovely cloud of denial for awhile.

Case in point:

1. In the last ten days I have lost:
1. my favorite new hat
2. the keys to my storage room
3. a check
4. my mini voice recorder
5. my iPod touch
6. a prescription I was supposed to get filled 
2. In the last ten days I forgot:
1. to bring checks to my doctor's appointments
2. to pick up laundry from the basement
3. to put milk back into the refrigerator
4. to mail a letter and ended up carrying it around for days
5. to take the remnants of a sandwich from my purse
6. the point of this blog entry
7. to eat lunch twice, leaving me cranky and confused until dinner
8. to feed my dogs one day
3. In the last ten days I found:
1. a gift certificate that I keep misplacing
2. two checks that I never deposited, one 18-months old and the other 3-years old
3. three prescriptions from 2010
4. four doctor's bills from 2 years ago that I never submitted for insurance
5. and no golden rings - "Engagement ring, I miss you so much!" 
4. In the last ten days just out of anxiety I bought:
1. knitting needles that I do not need
2. 3 new bags that I do not need
3. pounds of candy that I should not be eating
4. four poly-cotton t-shirts online for Brian, absolutely certain they were 100% cotton
5. articles of clothing that do not fit from the thrift store to alter
6. a cheese quesadilla 

I also double booked appointments twice causing last minute scrambling. I have not made two important phone calls I was supposed to make. I spent a whole day trying to mail one reimbursement form. I went back home several times because I forgot something I needed. This caused me to be late or unable to complete tasks. I yelled at a sales person. I tripped and fell down in the subway. I screamed when someone walked too close to me. I called my pharmacist stupid because he didn't fill one of my prescriptions. I interrupted every single person who tried to talk to me. I misunderstood at least a quarter of what was said to me. I argued with my neurologist about how to read my MRI. WTF!

All of this is not so unusual for a ten day period. In general I note my limitations and keep working. I guess it just hurts now because I kind of thought I was "getting better." 

Traveling with a brain injury

or any sort of invisible disability can be a nightmare.

For me, the problem begins with packing. This was one of the first signs that there was something wrong with my brain and one of the most difficult problems to explain. It has something to do with prospective memory, remembering to remember. Planning is one of those "executive functions." You have to remember what is needed for a trip and then follow through with gathering the correct items and then make sure all of those items (and not a bunch of others) make it into the bag. 

I just got back from a week long trip to my beautiful and most favorite place in the world. It left me feeling that I was capable of change. I actually packed the night before. I gave myself permission not to bring any crafts or my laptop. For entertainment, I brought only a book of Sudoku on my carry-on. It was liberating. Although it was scary by limiting myself to the essentials, I eliminated a lot of the cognitive energy it takes to keep coming up with alternatives. 

I prepared for this trip for weeks with my cognitive therapist. We reviewed all of my packing strategies, role-played going through the airport security, and developed a list of phrases I could use to reassure myself under worst-case scenarios. I made a short list of helpful suggestions to share with my sister. I know how much she loves me, but sharing a room with me for a week even before my brain injury was difficult. My tendency to perseverate, fixate, get stuck, or over-react put a strain on all of my relationships. As an exit strategy or to put an emergency brake on any potentially explosive conversations, I shared the phrase my husband and I use: Enough said! Although she modified it slightly, tempering it with I think that is... I still heard "enough said" and responded like a Pavlovian dog. I am so grateful that she is open and understanding. 

All of this was great and made the whole vacation experience much more relaxing. The number one and most helpful part of airport travel was the use of a wheel chair. I broke a bone in my foot in June and was still in a cast for this trip. I rested with my foot compressed, elevated, and iced for the whole month of July. What little walking I did required a cane and a slow and steady gait. When I found out that I would still be in a cast for my trip, I called the airline and asked for a wheel chair. They never asked me what was wrong. They just picked me up and whisked me through the whole confusing, overwhelming experience that is post 9/11 international travel. 

For a person with a brain injury, at least this person, getting on an airplane is like navigating an obstacle course. The fluorescent lights and abundance of signs, the crowds of people and bags, the number of personal, important items to juggle, and the gigantic new place to navigate without a map or help are all part of a giant recipe for brain freeze or, more likely, a catastrophic reaction. Besides all the external obstacles, my brain injury gave me a new bunch of hurdles I need to tackle cognitively. I have to keep telling myself that my perception of the world may be distorted. I have to use my training and hope that my reframe is correct and that I will respond appropriately. If this system breaks down, I start crying. I can be completely aware that this is not an appropriate reaction and still unable to control it. The more embarrassed I become, the harder it is to control.

The wheel chair transformed my experience. Everyone was immediately helpful. Nobody expected me to do anything and even stopped me if I tried. A guide provided by the airline whisked me past all the lines and navigated all checkpoints fielding and repeating questions for me. At every step there was someone to tell me exactly what to do. I was constantly reassured and given frequent information about what to expect next. The guide waited to make sure I put the appropriate documents where they belong. I cannot tell you the number of times I have lost my wallet or all my money during situations where my attention is divided. I wasn’t great pre-injury but after forget it. I stopped being surprised. The wheel chair service was like a magic carpet ride. Nothing could go wrong. Nobody minded if I was slow or confused. I was met with patience and respect at every turn.

Now you may be thinking, wow, everyone should get that. The difference is that my injury can render travel impossible. Brain injury is far more crippling than the broken bone in my foot. The problem is that it does not show. There is no giant bandage around my head to remind everyone that I have a problem.

I strongly advocate that everyone with a disability that affects their ability to travel to request a wheel chair. I think I will be doing it as long as I am still having trouble. It is truly an accommodation that makes airplane travel accessible to me. I would never take a wheel chair spot in a parking lot. Someone else needs it more than I do. The wheelchair service at the airport is not the same. There is no limit on the number of people allowed to use them. (Not that I know of anyway.) There is no equivalent for folks with an invisible disability. 

I googled “TBI and travel” and there is a dearth of information on the Internet. I got to the gate all by myself. It was the first time traveling since my injury that I arrived at my destination feeling as capable as when I walked out my door. So, there it is.

Look at me in my favorite place in the world!

A great message for the ones who stuck around:

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Photos from The Messenger Gazette in New Jersey

The Creativity Expo 2012 got some excellent press. The main article is about an amazing teenager Amara Riccio. I met her at the opening reception. She danced, and read poetry, and exhibited artwork. Her youthful energy and positive spirit reminded me to be grateful for what I have. At least for today, I will not write about grumpy stuff.

Here are two photos from the article:

Mixed media by Alyson Vega

Fiber Art by Alyson Vega

This is a link to the article about Amara:
Creativity Expo 2012

Nothing would make me happier than for someone to love one of my pieces so much that they want to own it. So far, no one has bought any of my art, but I think the prices were probably too high. However, inspired by the positive feedback I got, I will be listing most of the pieces for sale in my Etsy shop soon. I will keep you posted.

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 

Did you ever feel something...

so strong, you became overwhelmed by just being alive? It happens to me sometimes. I will look into Lily's round black eyes, or catch the smell of the sidewalk after rain, or taste a chocolate so sublime, that I think, I am alive. A tingly synaptic connection is made before the verbal part of my brain can register or articulate the experience.

Those moments when there is nothing but a wave of sensation and a hint of mortality, I know I am small and temporary. I am okay with that.

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.)