Imagine a beautiful angioma

I am in a weird place right now. I want to write to move ahead. I want to write to let go. I want to write to prevent myself from saying or doing anything I might regret.

My reaction time is fast. Whenever someone speaks to me, my brain prepares for an attack. Anger, fear, sadness, and rejection rise to the surface. The thoughts that fire rapidly across synapses are the articulation of these emotions. Having grown up in a house where words were sacred, I find it difficult to refute these irrational thoughts.

During the most recent presidential debate, I yelled at the television. NOOOOO! It was only 5 minutes into the program. My husband made me turn it off since it was too upsetting. I talked to my cognitive therapist about the event. I was angry at the moderator because she had promised to make sure the rules were followed and the questions were answered. She buckled so quickly and I was furious.

The election makes me worry about my future. I worry about money and health care and injustice and corruption and pharmaceutical companies and my daughter and clean water and the list goes on and on. My cognitive therapist asked me if I could trust that things would be okay, that the people would be smart enough to make the right decisions. No way, I replied. Trust is a big deal. History has shown me that I am the only reliable place to put any trust whatsoever. I guess it is one of those hot button words.

Imagine, on the other hand, I can do. I survived made it through my childhood by using fantasy to escape. As an adult, I worked hard to be grounded because I had more control. A job with insurance, a savings account, a mortgage, no credit card debt. These were all the ways I built a fortress of security so I would not be afraid. And now? With the future so bleak and my castle in ruins, I will retreat once again into the land of make believe. Can I imagine a serene and comfortable future? Yes, I can see it and that will have to do for now.

My Friend Rita's Poem

My Friend Rita's Poem:

Recovering from a Brain Injury

I am exhausted but...

I can not sleep

My thoughts are here but...

I can not think clearly

My words are many but...

I can not speak

I can not see what you see but...

I am not blind

I can hear everything but...

I have to cover my ears

I get hungry but...

nothing tastes the same

I can stand still but...

I can not stop my world from spinning

I feel so all alone but...

I am surrounded by LOVE

By my friend, Rita Chouinard, date of accident 4/3/11

Celebrate Good Times!

Saturday, September 29th was the one-year anniversary of the New York City Chapter of the Brain Injury Association of New York State. A large turnout made for a great party. It started with warm words, then delicious food, good friends, and a variety show. The work that made it such a successful event was apparent and yet, there were our chapter leaders hustling about cheerfully. Any doubts I had about having chapter leaders with brain injuries have been completely put to rest. I was majorly impressed.

I probably could have done more. I did recruit two friends, A.P.  and A.B., to join me in singing my parody song "because I gotta TBI." It was a big hit. There were a few actually talented singers like A.B. and P. who put their heart and soul into it. The stand-up comedian got a chilly reception when he heckled the brain-injured couple in the front of the room that talked during his set.

A month ago at our last chapter meeting, I sat next to A.B. Towards the end, I felt myself getting tired and overwhelmed. This is a sign that it is time to leave but I always think, "Oh, I'll be fine, this time." And then BIDDLE-DEE-OOP, I kick a stranger in the pharmacy line (true story). Anyway, as the meeting was wrapping up, A.B quietly hushed me and said I was such a bitch. I knew she was kidding but I still felt bad. I chalked it up to BI impulsivity and laughed, too. The difference was she said it a few times. It started to sting and it stuck in my thoughts.

At the party we all sat together to eat and chat. A.B. told my daughter that I was "something else" and recapped what happened at the chapter meeting. It was like I was hearing it for the first time. I had no memory of what preceded her calling me a bitch. A woman at the meeting kept interrupting with the same suggestion over and over again and was only appeased when her name was written down to help plan the Anniversary Party. As the meeting was ending, the same woman made a suggestion that there should be a party planning committee. Apparently, I said under my breath, for fuck's sake, you just volunteered for that.

I did not remember what had prompted A.B. to call me a bitch. I remembered being tired, irritated, snippy, but not exactly what I had said that was bitchy. I got it.

A second example of my dart-like tongue came up a few minutes later. R. sat down with us and I apologized to him for the third time. At a support group, A.B. was sharing about her engagement "bling" and how she couldn't get herself to take it off. Her brain injury was the result of a car accident. Waking from a six-week coma, she found that her husband of one year was killed when a truck jumped the barrier and hit them head on. Suggestions were offered, crosstalk ensued, someone brought up The Titanic and ring throwing and in that thread I mentioned my S.I. losing his wedding band while we were snorkeling. Unrealistically, I still look for it every time I am in Turks and Caicos.

Maybe, R. said, he threw it away on purpose. Zing. Fuck you, I said. He immediately said sorry and that he was just joking. I also said sorry because I knew that. After the meeting he apologized again, saying that sometimes things came out of his mouth before he could stop them. Duh, me too. Then I apologized again. So at the anniversary party I checked in with him and said sorry number 3. Later, our support group leader pulled me aside to make sure I was not upset with her. I couldn't imagine why she was asking. She said during the meeting while A.B. was sharing she tried to move things along and she thought I might have felt rushed and lashed out. No, I clarified, I was talking to R. I repeated the whole exchange. A.P. who was listening admitted that he, too, thought I was talking to him. The entire left side of the room probably thought my F.U. was aimed at them. What a mess.

My take-away from the party was a sense that I need to take responsibility for the distance I create between myself and others. In some ways, I am still that 18-year-old girl at college scowling in my giant men’s overcoat from the thrift store. Still my father's daughter, I would not  conform and smile, nor exchange fake pleasantries because society said I should. Alone, I carried my tray through the cafeteria looking at the groups of people talking and eating together, all the while wondering: Why doesn't anyone want to be friends with me?


It is not too late to change. I have good friends, new and old. At the anniversary party, many people bravely stood up to sing. One person spontaneously wrote a poem and shared. One man sang a medley of songs improvising as he went along.

Winter, spring, summer and fall

All you got to do is call

And I'll be there

Cause you've got a friend

If you fall

I’ll pick you up or

You can pick yourself up

Cause you’ve got a friend

I love that line and it really stuck with me. Falling is not an opportunity to test my friendships. I will pick myself up. So, there you have it.

Today I am fifty.

As the seconds tick by, I begin this post in a moment frozen in time. I have lived for one half of a century.

The event on Saturday was wonderful. Thanks to my friend who hosted it. Not only does she have an amazing apartment and a great eye for displaying art, she is kind, warm, and generous. We all held it together and it was a great success.

Seeing my work arranged that way was so fulfilling. It was kind of wacky though that the one piece so many people seemed to think was amazing was something I have shown them before. I did make a few changes to it before the show but still. When I first made it, I showed everyone. I thought it was so cool. Bleh. Nobody agreed. I kept it although I remember thinking about throwing it away once. It was the hubby who said not to throw it away. Then as I am getting ready for the show, he looks at it and asks me when did I make that. Umm. It was hanging on the wall in our bedroom for the last 4 years.

My daughter collected memories from people and put them in a scrap book. It is amazing. She cried as she gave it to me and I was so confused. I saw the pictures of myself and I realized I have no idea what was going on. She did so much work and only a few people contributed. I was so happy and relieved to see messages from people who were not able to be there. Nobody was avoiding me.

We requested no presents for the party. I really wanted people to come to the show with nothing in tow and open minds. I wanted them to take it all in. For me that was a celebration. I love making the stuff that I do. Sometimes, I feel so great about what I produce and other times, I feel foolish and want to burn it all. Having a show was a way to share me. This is who I am and this is what I am doing. I was glad that I got such positive responses. That was a great gift.

So, here it is my real birthday and I am wondering if anything is going to happen. Will my family get any presents for me? Last year, I was so sad. Not anymore! No way!

"I'm proud to say that I am 50 years old. I'm not one of them gals who's afraid to tell her real age. I'm 50! I like to kick! stretch! and kick! I'm 50! 50 years old!" I get to say it for a whole year, every day. And I will! People who matter, won't mind and people who mind, don't matter.

Regeneration: Art at 50

Today was best. I think everyone had fun. It was the perfect thing to do for my 50th birthday. I was surrounded by my most favorite people in the world. The few who weren't there sent wonderful greetings by way of a beautiful book my daughter put together for me.

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.