Saturday, March 29, 2008

Last day at the hospital

Yes, it is my last day at the hospital. Since yesterday I'm in a normal ward on the 3rd floor. I was able to accept visitors. Three of my friends came, I was feeling very lucky, and very much alive. A second chance to live! I am cherishing every moment -I still am -. So despite the hospital gown and everything I am very glad to welcome everybody. Kaan, my son is sitting on my bed, playing with every feature, up and down, TV off, TV on... Mom, my brother, three families all in the same room... I am very uplifted to join the crowd.

The same day a different speech therapist is on duty. I feel much more comfortable with this therapist. She is much more at ease. At the end she gives us some home work for over the weekend- because I'm going to be released home today.
The doctor comes and declares that my ......... counts are in line within normal limits. So I can go home. He gives instructions on using coumadin. Coumadin is going to be a key word within our household for the next six months. Then he signs my release papers. Then he does something else: he forbids me to drive. In other words, while singing the papers, he crosses off the line which says: She cannot drive. That is a major blow! Because it takes away my independence. Not that I would want to drive anytime soon, but having loss of speech is hard enough, having loss of mobility is something I didn't expect. Of course, I cannot be trusted with operating a killer machine like a car. What if I had a seizure while driving? A lot of stroke survivors do. What about my reflexes? All of the above are legitimate questions. With those thoughts we leave the hospital.

It seems a lifetime ago since I left home, although it was 7 days ago last Saturday morning. How very strange. Mehmet takes my arm to go up the stairs. Our condo is on the second floor. I want to take a shower. Then I'm ready for a deep and long sleep.
One thing about hospitals is that you cannot rest there, ever. Contrary to human nature, when you need your rest most to recover, you cannot sleep at all. Continuously there are disturbances: IV, tubes, constant beeping, nurses coming in and out, blood withdrawal at 5 am in the morning... You cannot get a wink of sleep.

Oh, how I'm ready to sleep, I feel safe, my bed is made....

Monday, March 17, 2008

further on understanding the written word

It is almost my 4th or 5th day in the ICU. My brother has brought me a book, by a new Turkish author. On the cover there is a young women in her 30s riding a segway. I try to read the title, no truly, I try to decipher the title. No matter how I try, I cannot make any sense of it. I know that they are 3 words on the page, with full concentration I look at them. The harder I try to focus the more elusive they become. Again it is like trying to look at a shining star, the more you look at them, the more they disappear. I don't mean visually I cannot take them in, I mean I cannot process the visual stimuli in my brain, to convert them to a meaning. It is another aspect of aphasia, similar to the fact that the more I try to remember a certain word, the harder it becomes to remember. Certainly a part of aphasia is a disconnect between knowledge and conversion mechanism of the brain, either into expression or into deciphering.

By the way, I have made small improvements on the expression front. Now, when I can think of a word I sometimes can explain it through a combination of schematic drawings and the "vocabulary" my mom helped me build through her drawings. Just today I was able to explain the concept "farmer's market" to her. Of course this took me 1/2 hour, but hey, I've got all the time on the world, and from now on, expressing is my job.

Also, slowly I make progress on the writing front too. I'm able to write my family's names by memory, without having to copy them. Also the title page of the book I told you about, by the end of the fourth day, I can recognize the individual letters.

But there is also something funny going on. Today I asked my mom for her telephone book. In my mom's book all my childhood friends' telephone numbers are listed. I figured, going through the pages, I can recognize some of the names, and copy them down with the intention of bringing them forward when I need them. But, alas, when I got the phonebook, there was another challenge: All of the phone book was written in 'cursive'. A very significant challenge indeed. I was quite angry with my mom, because she chose to write in this cursive language. It was precisely that to me, a different language. Nevertheless I could recognise some names. Like some of my best friends.
By the end of fifth day I could think of some words and write them down (of course terribly misspelled), but I am very proud.
Another interesting phenomenon: I tend to put the words or numbers I'm able to write, in rectangular shapes. Mom finds it very odd. I find it so reasonable that I'm sure there cannot be any other form of writing. When people write down words for me to copy, if they are not absolutely perfect, I have trouble, I cannot assign any meaning to it.

Tuesday, March 4, 2008

re-discovering drawing or not

In my spare time in the ICU- that means when nurses don't come to change IVs or my pee bag or draw some blood or come rushing by because of the wires that hang from all over my body beep - I try different methods of communication with my mom. Mom writes something on a piece of paper, I copy it down. Then I try to draw something. Am I capable of drawing now? In the past I was an amateur artist. I really wonder what my mind and my hand will do, as I begin to draw.
I think of drawing a straight line...
Ta da... My hand draws a straight line! Now some circle, yes, it is a circle!! Now that I get the hang of it I draw all kinds of things: a triangle, a square.... Yes! maybe I can communicate after all, by drawing! I am so so so happy!

Then I try more complex things like a chair. I look at a chair in the room, I try to imagine the concept of the chair... My my mind is totally blank. Nothing comes to the minds eye, exactly the same way words won't come. Instead of a chair I draw a rectangle. Everytime I try to imagine a concrete concept, my hand draws the nearest schematic resemblance to it. For example a table becomes a rectangle, a yogurt cup becomes a circle on a square…

Then I try a different tactic: instead of trying to draw it myself, I want my mom to draw it. Maybe like the written word, I can copy the pictures down.
She draws a tree, copy down the tree. She draws a cherry, I copy down the cherry.
But this time, I can draw the same tree, from memory, without looking. Yippie!

The interesting thing is: I can draw the tree, exactly as it was, but I cannot draw another one. For example, if my mom draws an apple tree, I can imagine THAT apple tree, but cannot make a variation, cannot draw a pine tree for instance.

Isn’t that very interesting? Maybe, if you think from a historic perspective, this is the reason how the picture-scriptures have evolved, like those of ancient egyptians or ancient Chinese. Maybe there is a separate section in our brain that specifically deals with schemata, with is different from images and from word.

Heck I am learning so much here, I feel almost like a living science experiment.

I really feel that way at the moment. As I said previously I am not depressed at all, I am only curious about what will come next. It is a shame really, not to being able to share all those thoughts with my mom or with my husband…

Monday, March 3, 2008

a very resourceful site

If you are looking for insight into the world of people living with aphasia, try this site:

the black box = our skull

I have to open a long bracket here and explain something; 16 months have passed since my stroke. Recovering my writing abilities took maybe four to six months. By recovery I mean, writing what I wanted to write, how I wanted to write it, albeit very slowly. At first when my aphasia was stronger, I couldn’t think in words. Then I started to retrieve words, but couldn’t find the symbols - le When I was handwriting, then I wrote veeery slowly, saying every word first in my head, spelling it, then transfer these on paper. Still, I made many mistakes, because of appraxia. While my mind was thinking “a-p-p-l-e”, my hand would write “e-m-n-a-l” , I would try again and this time my hand would write “a- m-p-e-l”. The same, when I was typing on the computer, although computers have an advantage because of built in intelligent software, they self correct things – of course if you write “emnal” instead of “apple” even the smartest software doesn’t know what to do.
Many months later, here I am, thrilled to be able to write all this down for other people to read. The most peculiar, maybe even funny thing is that, all that time, I was able to think. I was able to understand, to comprehend, to reason everything in normal terms. Although words were missing in my world, I don’t know how, but I was able to think. I don’t know how you are? Some people think verbally, they have to use words to follow their train of thought. Some people think visually, in other terms they see images in their minds eye. Yet again some people see moving images in their minds to think, they say, it is almost like snippets from a movie.
There might be many more kinds of thinking. All of this I have found out recently by asking around. I guess I was thinking in “Concepts”, and not so much in words. Or concepts and words were stored in different areas of the brain so that my thinking and reasoning was not impaired.
After my stroke I became even more interested in how the mind/brain works and to a greater degree in cognition itself. As of early 21st century, the “how the brain works”, the cognition, remains as the last frontier to be concurred by mankind. Particularly because it is all happening inside a black box, meaning our skull. Brain is hard to observe and dissect in action. Recent imaging techniques, especially f-MRI opened a major door into the human mind, and a lot of discoveries have been made in term of understanding the chemical processes behind the electrical. Still a lot remains to be discovered.
Because the brain is still a black box, we can only look at the output manifested by muscle movement. We can look at what is said by moving the muscles around the mouth, we can look at emotions as displayed by facial muscles, we can look at gestures as displayed by muscles of the body. That is how we as human being understand what the other person is saying. We have to decode what the other person is saying by looking at the manifestations of the muscles. So, when the muscle movement has been altered or gone we decode wrongly. We attach meaning to the wrong things.
This has gigantic implications: If a person is paralyzed or has spasticity, automatically we think, that persons mental capabilities must be lacking. Although inside the mind, that person can be perfectly capable of thinking and making judgments.