It's not what you said. It's just what my brain thought you said.

I find one of the most frustrating aspects of brain injury is the challenge of expressing the changes my brain has undergone. I see a cognitive therapist and it bothers me that I have to clarify my issues.

One issue with which I struggle is language processing. I told my therapist that sometimes I do not understand what someone says despite asking them to repeat it. She suggested I ask them to spell it for me. I could not explain why this does not help the words or their meaning get into my brain.

I once asked a lady where she got a lovely robe she was folding in the laundry room.  Master Whore on the street, is what I thought I heard. I knew that could not be right so I asked her to repeat it. I listened carefully, convinced that it was the word “whore” that was wrong. Master Borgas Street? I gave up and nodded. It was obviously not a place I could go. Hours later up in my apartment I replayed the conversation in my mind and then I said the words out loud. Duh! Where would you get a bathrobe? Victoria’s Secret!

A few days ago I was on a conference call with some members of the Brain Injury Association of New York City chapter. (Such a bad idea! People with BI on the phone with multiple other people with BI. Yikes!) The discussion concerned our choice of movies for an upcoming event, selected shorts or a full-length feature film. L mentioned a seven-minute film.

“Seventy minutes?” asked E.
“No. Seven minutes,” repeated L."70?""No. 7!"

This went back and forth until E. explained that it was easier for her to understand numbers if the other person said every digit, like seven – zero. Can you please say it that way.

Okay, said L, it is a seven-minute movie. E just kept hearing seventy.

“Seven – zero?” E kept asking.“No, seven!” L kept repeating.

It was frustrating to listen to the interaction but it made my own issue a little clearer. The misunderstood meaning had made its way into E’s brain and it was not going to change. She heard seventy and it was like she thought L was refusing to comply with her request to state each digit. As a result, she kept emphasizing SEVEN – ZERO, like she was telling L – please say it this way so I can understand you better. Eventually, she gave up and began to refer to the length of the movie as “a little over an hour.”

I am sure you can imagine what happened after that. Everyone tried to help her understand, all talking at once. It seems comical when I reflect on it. It is hilarious, even, in a who’s-on-first?-kind of way.

It makes me laugh because I'm relieved knowing I'm not the only one with this particular symptom of brain injury. I do not have the answer nor how my cognitive therapist can help me, but spelling does not make things clearer once my brain receives a scrambled message.

Navigating Brain Trauma is a Lonely Process

Yesterday I went with some new friends from the New York City Chapter of the Brain Injury Alliance (BIANYC) to see an artist discuss her work. Elliette Markhbein's show is called Whack'ed ... and then everything was different: Portraits of Traumatic Brain Injury Survivors. The artist suffered a brain injury 8 years ago and started painting during her recovery (like me). When she was first injured, she told us, she felt alone in her struggle. She barely understood what she was going through and once she did, she could not imagine that there were others who were like her. The TBI survivors viewing the show echoed that sentiment.

http://www.biausa.org/tbi-portrait-project

A therapist, in the months after my surgery, said something I will never forget. I felt so powerless trying to express what I was experiencing. I just wanted to explain it to one person, find one person who could understand what it was like to have brain surgery and then struggle to complete basic and previously mindless tasks. The therapist said, "Nobody will ever understand." I tried to accept those horrifying words, but it turned out she was wrong.

Most of the brain injury survivors I've met were abandoned by friends and family members. I am no different. None of my relationships was untouched by my experience. I am one of the lucky survivors to have a husband and daughter who love me enough to make a tremendous effort to understand. I am also so grateful for the other survivors I am meeting through the BIA.

This brain injury is part of my identity now. Everyone is shaped by his or her experiences, needs to process the changes, and may find solace in the company of others with similar pasts. Recognizing change, reflecting on experiences, and articulating frustration is hampered, or in some cases impossible, when the organ responsible for doing these tasks is damaged. Try wrapping your head around that one.

The Doctor is [OUT]

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

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

I will miss you, Dr. S.

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


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

Planning – Executive Function

• I ask people to wait; I only need 2 more things, five minutes.
• When I find it each item, reminds me of another essential thing.
• I cannot plan because I cannot actually see more than one step in front of me at a time.
• Each object is a clue to the big picture.
• That is when I am lucky enough to convince someone to wait for me.

Sunday, August 24, 2008

Sachi and I decide to hang out on the roof and catch some rays.

“I am ready whenever you are.”

I put on some sunscreen. Offer some. Chat about Fire Island, Buck’s Rock, dinner, art classes. I look and find for the SVA catalog. Winter 2008 seems like the correct one. I’ll work on my found object project so I grab the container with those.

“All I need is thread then we can leave. Give me two seconds.“

“I really want to go. You said you were ready five minutes ago.”

I spot the thread and next to it is a pair of scissors.

Oops! Yes, of course I need those too and
(Oh, crap)…

“I know. I know, Sorry. I only need a needle now.”

“This does not sound like two seconds, I think you need a little more time. Can I help you? What else do you need?”

LOOKING LOOKING

I want to stop and ask for help because there is probably something else but… what?

LOOKING

It is hard to find because… I do not have my glasses on.

“Now, I just need my glasses.”

I suddenly see why I am always late. I don’t know what else I need until I find the first thing. The related things aren’t staying in my head with it. While looking for glasses, I am holding the thread, scissors, needles, fabric, etc. All the objects I have collected are in my hands so I do not forget to put them in the bag.

OR I set them down somewhere and then can’t find them when I find the next (if I remember that I even set them down; I could just leave without them)

BECAUSE if I stopped and packed them, the item I just remembered I needed (glasses) flies out of my head. Since the ones I had in my hand are packed I have nothing to remind me of the next and I go searching with no purpose and every single thing I touch has some other possible association. Now I have lost track of the purpose of my trip, where I am going, and why I even needed the thread, and I still don’t have the glasses so I am not finding sought object but I don’t realize why it is so hard to find.

AND all this while (if I am alone) it really does seem like just one more thing and only a few minutes so when I glance at a clock on my way out, I am stunned to find that 40 minutes have gone by and I now have 20 minutes to get to my destination 45 minutes away.
THEREFORE, I run out the door clutching a banana, glasses, three $20 bills, letters to mail, and a book (it could have been what seemed so important to bring). I drop all of them as I lock the door. I stop and throw them all in the bag loose (except the letters to mail because the box is right there) and for the rest of the day seem to be unable to locate the cash because I probably dropped it in the mail box with the letters. I am hungry and can’t buy any food but the banana is down there forgotten squashed under a huge pile of other stuff in my bag that I do not need.

CAREFUL! careful

Peter Chadwick, a doctor and researcher of the mind lost his when he was younger. He recovered and wrote an article about it.

I was stood in the middle of a mountain of paper on the first day when a secretary said "You've got a job for life there!" I replied suddenly and loudly with "I know!!" Immediately, everyone in the office froze and looked at me with wide eyes. I knew at that moment that (as usual) it was not quite the right thing to say. I should have smiled perhaps and said more softly "Yes, it looks a bit of a job, I'll do my best for you" but "I know!!" was just that tiny bit aggressive, overassertive, perhaps a bit presumptious, and a bit impulsive. It was "sort of OK," but (as ever) it just was not quite right.

article

This was the day before he spun into madness.

How bad is it that I feel this way every day? The tiny tightrope line between psychosis and remembering to use appropriate social responses is where I keep thinking I am walking.

My daily mantra for morning meditation (which I came up with last week way before I read this article) is: Today I will speak to others and myself slowly and with patience.

Found via Mind Hacks one of my new favorite daily reads.