Saturday, December 29, 2007

The Yellow Submarine

I love the Beatles, but I didn't much care about their song "The Yellow Submarine".
Is it a curse then, that I now seem to be stuck with that song, forever and ever playing in my head? Yes, I'm not joking. After my stroke, a funny thing happened: Whenever I try to remember a song - any song- any melody - I face a continuous loop of the same insanity:

"In the town where I was born
Lived a man who sailed to sea
And he told us of his life
In the land of submarines"

I try hard to think of other songs, for example: "Twinkle, twinkle little star!" But no - instead:

"We all live in our yellow submarine,
Yellow submarine, yellow submarine"

Maybe something more contemporary would work? I try several songs, both melodies of my mother tongue and in English, melodies from my childhood and present.... But alas...

"We all live in our yellow submarine,
Yellow submarine, yellow submarine"

When I listen to other melodies, I can accompany them internally, but after the music stops, so does my accompaniment. It is almost a short term memory loss of "musical abilities", replaced by a giant submarine.

Monday, December 17, 2007

An ordinary Tuesday at the hospital

The morning ends with the speech therapist coming into the room. Again I cannot produce any sound at all. Then comes the questioning about various objects and concepts. She asks me to point to the "doctor" sign on a sheet of paper. From various options, I cannot select the sign. She points it out. Then she asks me again. After maybe 30 seconds of thinking and evaluating I can point it out too. Gosh, it is really hard work. I have to concentrate very hard. Much later, may be after one year, when I ask my my brother about the hospital days, he volunteers that during those days I was like a very slow processing computer. You put a search word in, hit enter.... and wait... and wait..., and finally the answer would come. But I was not noticing that so much time went by. I was really thinking hard.

After lunch a cardiologist comes, he is going to perform an oesophageal doppler ultrasonography. That means he is to put a tube into my esophagus, and measure my cardiac output. OK.

After he performs the non invasive procedure, he gives me the "All clear!" sign. And tells that I am as healthy as a mule. Of course he doesn't say this with those words! But long story short it is what I take out, or what I need to hear.

Now comes time time for the angio. Nurses come and take me downstairs to the radiology room, they speak among themselves freely, joking...

It is highly peculiar, how this thing works. People who come to the hospital are sick or injured. Most of them are experiencing big or small personal tragedies at the moment they are admitted. At the same time, for the people who work at the hospital, it is business as usual at the "office". Same old , same old... They cannot walk around with grim faces all the time, nor should they. But this juxtaposition leads to one big emotional question mark: the question mark behind what is special and what is common. The emotions float freely between mundane and extraordinary. If you think about it, every human being's coming to this world is the single most unique experience in his or her life -and the people around them- so is every persons death. But at the same time, life as well as death are extremely ordinary. Everybody dies, everybody is born somehow... Sickness and injury are inbetween states. As for the hospital people, they deal with people's most singular experiences in the most unremarkable way.

Sorry for the ranting... The reason why I sidetracked for a while are nurses that came to bring me downstairs. They are joking among themselves and they are also joking with me. "Whazzup?" "How is it goin' eh?", I'm delighted to join in their joyous dialogue. I want to say: "Sugar, Were Goin Down Swingin!" Unfortunately, my communication repertory is limited to four gestures, so I reply by turning my hands around each other. " Yes, right!"he says " Crushing waves! Crushing waves!" Mehmet and I look to each other, laugh out loud. From then on we will refer to this gesture as "crushing waves" movement. With that Mehmet is kindly shown the door, and I am on my own.

The doctors make an incision to the artery in my groin, for a minitube to go all the way to my blocked carotid artery. The operation goes very smoothly, and I'm out in no time. Back to my room.
Soon they will tell us, after deliberating the matter among the "stroke team", the long awaited diagnosis : FMD (Fibro Muscular Dysplasia)

What? (more about that later)

to angio or not to angio

The following morning the doctors come with an important suggestion: They want to make an angiogram of carotid artery, post mortem (!), and see what has caused the stroke in the first place. It will not play any role in my recovery. As far as we could see from the MRI, there is a child's fist size dead region right in and around the broca's area of my brain, which will not recover. This is my brain's picture you see on the left hand side.
They say this is important to prevent other strokes in the future. But it leaves us with an important question: To angio or not. Because there is a 1% chance the the operation will cause another blood cloth that may go into the brain once again. The doctors insist that it is the best course of action. As Mehmet is the physician in our family, I leave the decision to him. And thus I put him in such a difficult position. So difficult... he has to decide about my future... Although I'm physically there, seemingly alright,but because I cannot voice my opinion in any intelligent way, people around me are not sure of my comprehension skills. Heck, even I'm not sure of my comprehension skills! It is much harder to decide in behalf of a loved one.

In the end we go with the doctors suggestion. After they leave my room, Mehmet comes to my bedside, takes my hands into his and tells me :" Whatever happens, Banu, I will always take care of you! Always!". However corny this may sound, it fills my heart with tenderness and love for him.

Friday, December 7, 2007

Meeting my Mom and Brother

That evening my mom and brother come from the airport. I don't know what condition I will find them in. I hope they wont cry. But even if they cry, I know that I will be strong for both of us.

Muammer, another friend of ours, has gone to the airport to pick up my family, so they enter the room laughing and talking, as if coming to a regular family gathering. We hug. It almost feels like coming home. Mom is very strong. She smiles as she looks at me. The only thing that tells me something is awry are my brother's tears that swell up, as I hug him.

Mom tells me that from the moment they told her I had a stroke, she had the feeling all was going to be well. It was with that feeling she spent the last 16 hours on the plane.

After I left my mom and dad behind in Istanbul to come to the US - ten years ago, I have always feared the worst with every ring of the telephone:
'Someday, my brother will be at the other end: "I have bad news." he will say, "We lost Dad -or- Mom." ' Then I will feel a deep regret, not being with them in their last moments. A deep deep regret...
How life throws curve balls when you least expect them. Who would think that my mom was going to be at the receiving end of the telephone?

It is already 11 pm at night. Mom and Emre (my brother) go home. Mehmet, my husband, stays with me at my bedside. For the past three nights he hasn't slept much either.

Tuesday, December 4, 2007

my story 6- Meeting with my baby - Kaan

Hi! I'm back after 2 months, been gone to visit my parents, relatives, friends in Istanbul. It's been heavenly.

In the afternoon My baby -Kaan - comes to the hospital. He is 3 years old at the moment, and never left with other people, not even once with a babysitter. So he must be in quite a shock himself, with no mom and dad around. We left him with a couple of friends for that weekend, Zeynep and Emre, who were the only people present at the moment. Until that incidence, he and I have been inseparable, a lot of times he even didn't want my husband around, but me.

Mehmet has told him from the get go, that "Mommy is going to the Hospital, she is going to spend some time there because she is sick. She currently cannot speak, but will be better soon". The moment Kaan enters the ICU, it is a moment of truth. Will he accept the new me, or will he run away? Because Mommy has changed a lot.

Kaan enters the room on my husbands lap. He doesn't run away, but he also rejects to come near me. Of course, I cannot claim to be the Beauty Queen, with all the wires, tubes and pipes going into me or hanging out of me. When he is asked to give a kiss to Mommy, he comes near for my kiss, but refuses to sit on my lap. After that he becomes his 3 years old self again: pushing buttons on the side of my bed to make me go up or down. With that he has a lot more fun. After a while, when he is told that his buddy, Arman, is waiting outside, he goes merrily to the lobby.

One more obstacle down! Kaan seems happy. Children are much more sturdy than we give them credit for!

Wednesday, October 10, 2007

my story 5 -aphasia assement at the hospital

Then she takes the pad and writes the name of my husband. She asks me to copy it down. To my surprise, I can do it. She writes down "Kaan" I can also copy it down. But when she gives me a blank page I cannot write anything down but my name over an over again.

She wants me to imitate her in saying certain vowels like: "OOOO, UUUU, EEEEE". Let alone imitating them, I cannot even fathom what she wants me to do. It is almost like she has came from another planet and she wants me to use telekinesis to bend a spoon or something. How shall I know how to do it? Which command shall my brain issue to bend the spoon? I have no idea!

Finally she shows me a page with different symbols on it. And wants me to point to the one with a 'doctor' sign on it, then a 'nurse' sign, 'food', 'water'... But the efforts are futile. The feeling is very odd. I know what a doctor sign should look like but among the multiple signs it is impossible to point to the right one. If only it could be simpler like one sign per page and then give me a selection between two signs only, then maybe I could give an answer. Or a very simple photograph, schematised drawings confuse me.
Besides pointing to the written word is very difficult. It is as if spoken word and gestures are one and the same. It is a bundle I cannot separate.

So far for today. I will be back. Meanwhile check out Jean's blog. Her husband Don lives with aphasia, and she has the difficult job of decoding what he intents to mean.

Tuesday, October 9, 2007

my story 4

On Monday morning, two days after the stroke, I get a visit from the speech therapist. She gives me permission to drink and eat. Whoa! What a relief to see that I can swallow! I'm eating very slowly so that I don't accidentally inhale anything. I'm told that the most common sickness after a stroke is pnemonia.

But eating is no easy task either: the right side of my face from my eyebrow down to my chin is paralysed, including the right side of my tongue. This feels very weird: all of a sudden, the four wheeler car I have been driving blasted off two tires and I am trying to manage on two wheels alone. So continously I bite my right cheek, lip and tongue. By the end of the breakfast I'm a bloody mess.

Then comes the speech assesment. I cannot produce any recognisable sound whatsoever. The only sounds coming out of my mouth are: "Hmmm Hmmm!" (to indicate yes) "Ummmm!" (to indicate no).
Everything is oddly fuzzy. At the same time everything is very clear too, but whatever I'm trying to focus on that becomes instantly fuzzy. You know the feeling of looking at the stars, they all seem very bright but when you want to focus on a particular star, that almost disappears. My visual skew is especially true on my right side. Allthough I have plenty of peripheral vision, I still feel like looking through a tunnel. The analogy with 'the stars at night' is also true for words. Whatever concept I am trying to think of and remember the name, it escapes me."It's right at the tip of my tongue." But as hard as I try to remember I cannot do it. Another issue is get my muscles to move. Just like a paralysed arm or a leg my brain cannot command my muscles to do anything at my will. The funny thing is that I also seem to have lost my gestures. Exept for showing thumbs up or down for yes or no, I cannot do any other gesture to indicate my intentions. Oh, yeah there is also another movement I do quite often: bringing my hands together infront of me and circling them around each other. Whatever I want to say I do this circling motion. "What time is it?" Circling. "Water please!" More circling.

The speech therapist gives me a pad and pencil. She wants me to write my name. I write it down. Hoorray! I can write! I can write! Hooray! Then she wants me to write my husband Mehmet's name. But my hand writes my name again. She wants me to write my son Kaan's name. As if somebody else is in command of my hand, my name comes out. This is highly interesting. What ever I try to write, it is always the same: "Banu Turhan".

Monday, October 8, 2007

my story 3

That whole day both in the ER and also in the ICU, a thought keeps bothering me: What if I go into a coma? I didn't leave any living will behind. In the films you never hear what is going on inside the brains of the patients, only dialogs of the people at her bedside. The patient is always in a sleeping position, serene, oblivious to what's going on around. What if this isn't like it seems? What if the brain is awake, hearing what is said, thinking and feeling? I imagine being stuck inside this body forever. My friends and relatives coming to my bedside, saying "It is so sad! So sad!" All the while me screaming with a silent voice " Hellooo! It is me Banu! Can you hear me? I'm stuck here!! Can anybody help please?"
As the thought passes through my mind, most of all I regret that I didn't leave a will behind and that I didn't leave any letters behind to tell people I love my thoughts about them. Especially my son.

On Monday, I'm happy to learn that my Mom and Kidbrother are coming, the earliest flight they could take. I'm both happy about their coming but also worry a bit about my mom. I'm weary about her me seeing in this condition. I know what it is to see a child sick.

Sunday, October 7, 2007

My story 2

Dear Reader:
It has been almost 14 months since my stroke. It happened on August 19th 2006, on our 10th year wedding aniversary (like a joke). By now I can speak fairly well although a bit clumsy and slowly, people think I have thick accent. I live in Washington DC and my native language is Turkish. But the language doesn't matter because I speak both languages with an "appraxia" accent since the stroke.
As I have re-gained my writing abilities, I wanted to write down everything as fast as I could, while the memory is relatively fresh. I hope to give the patient's perspective to the condition, to be of help to caregivers as much as healers. Also because I'm often told that I made a relatively speedy recovery, my intention is to document everything so that new patients can benefit from the process.
Currently in the US there are approximately 5 700 000 stroke survivors (ASA -2004). It is the third leading cause of death after heart disease and all forms cancer combined, and it is the leading cause of long term disability. Among survivors, 1 in 6 have aphasia (NINSD -2004). The funny thing about aphasia is: your friends and relatives focus on more manifest symptoms of stroke, like paralysis. So you are in real danger of being labeled as “having lost a few marbles…” Although your intellect, your judgment is intact, nobody knows about it. Especially if you are over 60 years old, they say it is Alzheimers. So it is important to make the clear distinction that everybody knows: You can think and judge as before but you are jailed within your own head.

Anyways back to my story:
Since I spoke the words "I can't speak" I hadn't uttered a single word. That night in the ICU, nurses come an go every half hour taking my vitals and doing a quick neurological exam: "Smile, squeeze my hand, lift your foot..."

The right side of my face is paralysed. When the nurses ask me to smile for them, I only smile with the left side of my face. I also feel slightly ashamed as I cannot fulfill their request. At the same time, I'm afraid to also lose my limbs to paralysis, that when they say "Squeeze my hand" I squeeze the nurses' hand with all my strenght. But slowly my right hand becomes weaker and weaker. All night long I go through what-if scenarios. What if I cannot regain the usage of my right hand? How long will it take to learn to write with the left hand? How long to learn to draw/paint?
Of course at that point I have no idea that I also lost my ability to express myself in any other way.

That night I also contemplate my feelings about the whole thing: I don't feel sad at all. It is surprising that I don't feel sad, everybody around me seems to feel that way. You see, I have depression. Although I had no history of depression, when my little son was born, I have experienced post partum depression. That has stuck with me ever since.
So it is highly perplexing not to feel anxiety or sadness, given the overwhelming condition that I'm in. I almost feel giddy. What is going on? I think it must be "shell shock".

Later I'm to find out that a stroke effects the brain almost like strong electroshock. Releasing all kinds of chemicals among which serotonin, that gives the brain that positive feeling.

Saturday, October 6, 2007

my story 1

“I cannot speak!” Those were the last words I uttered. And just like that, I lost my ability to communicate in any shape or form.

I was playing with my three year old son in the living room, helping him solve a Winnie the Pooh puzzle, when I felt something going wrong inside my brain, something terribly wrong. “I cannot speak!” I stood up, ran to the bedroom where my husband was sleeping, holding my hands around my head in a silent scream. He jumped up as soon as he saw the Munch-like expression on my face, tried to calm me down. But a quick exam revealed, my husband is a physician by training, that there was something wrong with my nervous system. I was 39 years old, 115 lbs, in good health, whatever it was it couldn't be too serious, so we drove to the nearest hospital…

As soon as we entered the emergency room it all began: CAT scans –to see if there was blood in my brain, MRIs of my brain and neck, waiting for the right specialist (If possible don’t have an emergency on a weekend - chances are you are a lot less likely to survive), electrodes everywhere on my body, doctors and nurses speaking jargon... I was watching a scene from the TV series ER, with yours truly in the leading role as the patient. My husband was trying to keep me informed as much as he could. Only this time the medical jargon thrown around was far from entertaining. Besides I couldn't understand whether I also lost my ability to comprehend the spoken word or it simply was the terminology used. "Magnetic Resonance Imaging reveals a lateral dissection of the internal carotid artery leading to a thrombosis. We suspect the dissection is a result of cerebral fibromuscular dysplasia." (
Hellooo? Do you hear me? Could you speak English, please?

In the end it became clear that I had a stroke. The clot-busting medication called tissue plasminogen activator (t-PA), that should dissolve the blockage in the artery didn't work either. My left carotid artery was blocked forever and the brain area responsible from speaking, more commonly known as the Broca’s area, was dead. When I say speaking, I mean communication in any form: I mean writing, drawing, language, gestures, in short any means of expressing oneself …
This is my MRI right there on this picture on the left. As you can see both the left and the right caratid arteries ave dissections, in other words you see that they don't run smoothly as a normal artery should, they have scar tissue. On top on the left artery (it is right on the picture) is blocked.