Saturday, February 28, 2009

September Tuesday 28, 2006

I wake up early in the morning, shower, dress up, and leave the room without waking anybody. Then I go to the breakfast area to see what is cooking. Wonderful: bake-it-yourself waffles, sausages, eggs, potatoes, oatmeal, yogurt, you name it, it is there, even cooked rice and miso soup! After I finish my meal, I try to find a corner to practice my speech. The dining area is too full and loud; outside it is too cold; finally I go to the gym area which is totally empty. I pull the big binder out and repeat some one syllable words. Until I notice that it is 8:30 and the bus will be leaving. It is a mini-bus for maybe 15 people, but there is only two other people waiting: Mike and his wife Rose. Mike is the aphasia patient, he is 49 years old, his wife will be staying with him for only one month, then he will be on his own. Mike’s situation is a bit more severe than me. He has trouble finding words, but as far as I can see has no trouble pronouncing them. He also has some weakness on his right side, as I understand from the stretching movements he does from time to time. Apart from that there is no indication that he is handicapped in any way. Rose is quite talkative, she talks for the 30 min trip long, from this and that…
At the center, Debbie gives us our weekly schedules. According to my schedule I have: Marie, Ann and X for my one on one therapies, Suzanne for my group therapy, Lynn for Music therapy and computer lab for that week.
The next session I have is group therapy. On the schedule is also indicated where the session is going to take place. So I go to room 202. In room 202 I find one other person: Ruth. The wonderful Ruth! To me it doesn’t seem like she is suffering from anything really. She is perfectly talkative, has all the limbs going for her, in fact, at 84 she looks-and acts- more energetic than me. I see that she has a hearing aid, and therefore cannot hear people well. When Susanne comes and we go deeper into discussion, I understand. Ruth suffers from a damage to the Wernicke’s area to the brain.
According to Wikipedia: “Wernicke's area is located in the left hemisphere, as the left hemisphere is specialized for language skills. Occlusion of the middle cerebral artery in a stroke can affect the proper functioning of this area. Damage to this area could cause a type of aphasia that is now called Wernicke's aphasia or receptive aphasia. This condition results in a major impairment of language comprehension, and in speech that has a natural-sounding rhythm and a relatively normal syntax but is largely meaningless (a condition sometimes called fluent or jargon aphasia). It also has connections to the primary auditory cortex, evidence for its role in the comprehension of the spoken words.”
Therefore Ruth has hard times attaching meaning to my speech, or anybody’s speech for that reason. Furthermore, when she speaks she substitutes random words in an inconsistent fashion. And because she doesn’t understand what she hears (part to the brain damage, part to loss of hearing), she is in a double whammy. But Ruth is the funniest person ever. She has a great sense of humor. For example she means to say: “It is raining cats and dogs this morning!” Instead she says: “It is raining great potatoes this morning!” When we tell her what she just said (in fact write it down for her) she laughs out loud, very amused. After just one session with her we understand that we are going to become best friends, something like the Marx Brothers. Me excellent in understanding but very lousy in speaking, Ruth excellent in speaking but lousy understanding: Deaf leading the blind.

Thursday, February 26, 2009

We are heading off to Michigan

The 26th of September has come, and we are heading off to Michigan, Ann Arbor. Mehmet has made all the arrangements in advance; the University of Michigan Aphasia Program, place reserved, advance paid, check; hotel reserved, check; his remote work permission from the office, check; things to do with Kaan while I am of in rehab, check; things to for my mom while I am of in rehab, check. My husband is so thoughtful; he doesn’t forget any single detail.
So on that morning, we load our compact car as much as possible, give the key for watering the plants to friends, and take off. It is an eight hour drive. Of course we have a three year old in the car; we need to take it easy. But the drive is uneventful, which is good. Kaan is not yet in the habit of asking the dreaded question “Are we there yet?”. Perhaps that starts later it life. He is happy as a lark. We have informed the preschool that he is taking off for 6 weeks. This is a vacation, an adventure for him. Every two hours we are at a rest stop, he is allowed to eat junk food.
At seven or eight in the evening we arrive at our hotel: Residence Inn by Marriott Ann Arbor.
The letter from the manager says:

“Dear Mr. Kayaalp:

Thank you for your interest in our hotel to accommodate you and your family while attending Session G of the University of Michigan Aphasia Program. I have attached the brochure we have created specifically for the Program that provides a general overview of our hotel with diagrams of our 4 different room types. I have also included our September evening social calendar.

We also have pictures of our hotel at our website:
Please let me know what questions you may have. The Residence Inn by Marriott is one of Marriott's extended stay brands that specifically caters to guest who are away from home for 5 or more nights. I know you and your family would be very comfortable with us.

Warm Regards”

Mehmet informs us that it is an extended stay; so we will have a “penthouse suit”, with our own kitchen and everything. Mom is going to sleep on the second floor. Kaan is going to sleep with us. Mehmet has bought him an airbed online, just his size, very cute, with an polar sheet that has moon and stars on it.
At the lobby, we are informed that there is a meeting at the dining room going on, all University of Michigan Aphasia program students like me, if I like, I can join them. I have a quick peek from the door.

I see them and it hits me like slap in the face: Those are men over fifty, with white hair, in wheel chairs, cannot speak at all… It reminds me of the nursing homes we see on TV, of end of life.
My first feeling is rejection. I reject that I have anything in common with. They are crippled. I am not.
The truth is, up until then, I was quite upbeat, I didn’t see myself as disabled at all. In my mind, I was as intact, as I used to be before the stroke. All my loved ones also treated me like nothing was the matter. My condition, if you call it a condition, was only temporary. I was going to be my own self back within a year.
Looking at the patients in the dining room places a mirror in front of me. If I am in the same category with them, I am one of them. I am “disabled”. It means I have to come to terms with it, accept the new me and learn to deal with it. Still, my predominant feeling is denial. I don’t join them, instead, I go tell my family to go to our room.

The room is really cozy. Two levels, so that my mom can have a little privacy, and Kaan has different nooks and crannies to hide, run up and down the stairs. Even the fireplace is real, you can burn real wood in there. After we settle down, Mehmet goes to find a grocery store to fill the fridge. We are going to eat dinner in our room, to reduce at least the food bill. This trip, $30 000 including hotel and therapy, is going to be the most expensive “vacation” of our lifetime. Just thinking about it, you don’t spend so much if you take a trip around the world with your whole family, or some exotic vacation for weeks… This is surreal. But we are here, and we decide to make the best of our time while we are here.
The weather is warm, although it is the end of September, the autumn chill hasn’t yet descended upon Ann Arbor. None of us has ever been in Ann Arbor. Between 1997 and 2001 I have been a lot to Michigan on business, commuting from Pittsburg on plain, at least three days a week, every week; but I have always been to Grand Rapids MI, and visiting stores around the region on business, still never to Ann Arbor. From experience I know that Michigan is flat land, that there is a lot of Dutch and Scandinavian ancestry among the inhabitants, but beyond that it is hard for me to see it with a tourist’s spectacles. I am pretty determined that I will stay at the hotel, go to school (rehab), come back, work on my homework pretty hard, and repeat this every day. I am pretty motivated. It doesn’t even occur to me that it can be any other way, the work ethic in me, which tells me ‘work is work’ and ‘life is life’ and both of them don’t mix, is rather strong.
Besides the program looks so intensive I doubt that I will have any breathing room at all. So, our little adventure begins.
September Monday 27, 2006
We drive to 1111 East Catherine Street. The center is in a small brick building, to my surprise, right down in the basement. It doesn’t seem to be like I imagined, especially because it is a University Hospital and all. You know, in movies, when the lead character is somehow injured, they bring her to this super scientific facility, with white coats running around, lots of labs, something to give the visual impression of a sci-fi atmosphere, ok, at least some brushed steel, gray and white in the background. Well it is nothing like that. After climbing down two flights of stairs of the brick building we come to the reception area. Lisa and Debbie greet us with very warm smiles. While Mehmet is off to see the treasurer (about how we will pay the bill) I am introduced to Marie Evans, my lead counselor. She takes my discharge papers, that Sandy has written, yet, she puts me again through assessment:
Understanding the oral word, the written word, describing what I see, and yes there is the Boston Diagnostic Cookie picture again, finding words, pronunciation etc. Then I see a battery of therapists one by one, who also assess me on different abilities. Marie finishes up with getting me on video as well as on audio tape.
The committee of speech therapists will meet up later to discuss what kind of therapy I will need, and give me my schedule in the coming days. For every client UMAP handles, (and we are called clients, not patients), they are trying to customize the program as much as possible. Most of the therapists have a specialty, and they try to maximize the match between clients and therapists.
The committee meets, the verdict is as follows:
“Mrs Turhan’s speech was characterized by the inconsistent phonemic substitutions and deletions that are typical of verbal apraxia, as well as the distortions that are more typical of dysarthria. Verbal apraxia is difficulty sequencing, or organizing, speech sounds into meaningful words. It is also characterized by difficulty initiating or starting speech independently. Dysarthria is neuromuscular weakness resulting from stroke or degenerative disease that, among other things, results in imprecise, less intellible speech. Mrs Turhan spoke with adequate volume but decreased speed. She had difficulty with “ch”,”sh”,”j” s blends, “l” and “r” colored vowels, “f”,”v”,”kw” or “qu”, “ing” and the sequencing of back to front consonants. The following substitutions were noted: r/l, s/sh, sh/ch, ink/ing, t/d. Mrs Turhan syllabilified words easily and independently. Was often able to self correct, and did self monitor her speech part of the time. She had pretty good sound/symbol associations, which she also used for spelling. Some of the vowel and consonant associations were probably due to the fact that English is a second language for her.
On the Apraxia Battery for Adults-Second edition (ABA-2), Mrs Turhan’s scores on the increasing word length, repeated trials and Polysyllabic Words subtests indicated mild to moderate apraxia. There was no evidence of limb apraxia. The three intelligibility subtests of the Frenchray Assesment of Dysathria were also administered. Mrs. Turhan scored 30% intelligible on the words, repetition subtests. 60% intelligible on the Sentences/Description subtests and 45% - 50% intelligible on a sentence-sentence basis in conversational speech. These scores indicate a moderate to severe dysathria.” (see attached)
Apart from the above, the conclusion was that I was able to express what I think either verbally or gesturing or pointing etc; that I was able to understand what I read or hear and finally that I was able to write what I thought.
For somebody who was earning her living via persuading others, saying “vael”, while pointing to water, if I wanted some refreshment doesn’t seem like much to you. You see, I was an MBA, in Brand Management for a Fortune 100 company, before I got pregnant. But to a stroke survivor, being able to bring 2 and 2 together, i.e. the concept water and utter the word “water” or something similar to that is great achievement.
At lunch, all of the students meet at the lunch room with their caregivers, we order lunch from an outside company. Later I decide to bring lunch from home.

Discharged from Therapy at the Advantist Hospital

When I tell Sandy, my speech therapist that we have signed up for the program in Michigan, she has difficulty understanding why. Why do we go there, while we are making such good progress here; pay a lot money on top. She sees this move as totally unnecessary. I feel that she is annoyed a bit. I feel as if I am betraying her trust, or rather, that I don’t trust her enough. But the decision has been made, advance paid…
The truth is, there is no better time to go to Michigan, if we are going to do it, we better do it earlier than later. Because we are running against time; I am told over and over again: the first three months are crucial in stroke recovery. In Michigan there is going to be more of everything: more therapy, more occasion to talk, more therapists, more therapy styles…
The more my brain is exposed to things the better. Besides, I feel ready. I have visualized the trip in my mind, being away from my home, from my familiar surroundings, and it is OK.
So, Sandy discharges me, she makes an assessment again. After 4 weeks of treatment, here is what the discharge summary says:
“Overall Patient progressed from severe expressive communication deficits (apraxia, dysarthria, aphasia) and occasional receptive language deficits to mild/moderate dysarthrial appraxia and occasional difficulty in spelling. Functionally she progressed from ‘0’ verbal expression to communicating at the conversational level. The only residual aphasia is in spelling.”

Wednesday, February 11, 2009

My son and my husband

My son is only three years old. His name is Kaan, as you know. Up until now he was truly a mama’s boy, most of the baby’s are. He is depends on me from morning till sleep time for food, for sleep, for things he cannot do himself but desperately tries to; I’m his audience, his playmate, his teacher… When he cries he cries for mama, when he has a booboo, it doesn’t go away unless I kiss it. His dad is also very very involved, but it is not the same as mom.
Then suddenly “Pooff!”. His mom disappeared! She is not physically there for him anymore. She cannot provide. He tries to talk with her, no, can’t do; he wants her to carry him; nope, can’t do; he wants her to read to him as usual, or sing to him, no, no and no again. She sleeps the whole day, when she doesn’t sleep she has to work. Both Mehmet and my mom tell him over and over again that: mom is temporarily sick, but she will be better. She has lost her speech; she has to learn how to speak again; she has to work hard but she will speak again. She sleeps a lot because she needs to recover.
He understands all that, but because young kids live in the moment, he pushes hard for me to return back to normal. We had a sleep routine like many families: he has dinner, he takes a bath, then I read to him in bed. Now because I cannot read anymore we all lie down on his bed, Mehmet reads, he and I listen. After two weeks of this, he doesn’t want me in the room again. When I try to lie down, he pushes me out of the bed, he clings to his dad.
Of course, secretly I cry in the bathroom. But we do not give in. Mehmet tells him very sternly: “If mom goes out of bed, I go too! She is going to stay here with us and listen. Over time she will read you stories again, like she used to.” It is very hard on the children because they do not understand completely, it is impossible. It is hard on me to, my baby rejecting me. But my husband is on my side like a rock, we are in this together. Besides, I can assure you, years later, Kaan will not remember any of these. He will only remember the very last ‘me’, precisely because he lives in the moment.

Slowly I watch, how over these three weeks my son’s relationship with his father evolves, how it grows into a bourgeoning relationship that is more and more layered. Now Mehmet is the playmate, the reader, the explain it all person, booboo healer… I observe how much fun they have together, how much Mehmet cares about Kaan’s feeding, clothing, learning… I always knew that Mehmet loves Kaan beyond comprehension, but seeing the bonding happening between them…

You cannot imagine how much relieve a mom can feel when she knows her loved ones are in good hands (in this case in each other’s hands).I take so much comfort from the fact that they will be fine; no matter what happens to me, they will be fine. They will survive and prosper after I am gone. Don’t misunderstand me though. I am not going anywhere. I too will survive and prosper, no matter what. The constant worrying, the constant anxiety accompanying every parent disappears over time. At a time where I need to concentrate on getting better, this relief comes like a soothing ointment for my soul.

Tuesday, February 10, 2009


Since the days at the hospital, I didn’t try to draw or paint. I am a visual person. When I sit down to explain something to another person, after a few attempts I usually I find myself getting out a pen and paper, drawing the the thing. It may be a flowchart, a picture, a list, partially to clear my own mind and partially to for the other party to haven easier time to decode. Expressing myself visually is very important to me, almost as important as writing. That said, although it is such an important part, I do not work on it.

My priority list is:
1) Talking
2) Talking
3) Talking
4) Writing
In that order.

Besides, like with the computer, I am afraid broaching that subject again, what if I keep disappointing myself. Then suddenly it happens. On the Third week after the stroke, as I am waiting for my husband, to pick me up from the lobby of the Adventist Rehab Hospital, I pick up a paper and pencil and begin to draw, just like that…
I draw one picture.

I am so so so happy! I can jump up and down!, I want to shout to the whole wide world! I can draw again! I want to do summersaults! Of course like any self respecting person I don’t do them- besides I don’t even know how. Instead, I draw another picture… As my husband comes, I am on my third picture already. I tell him the news. He says, wonderful! But I can tell that he has other things in his mind. At home I tell my mother. She is absolutely, positively impressed by the news. Because she knows my life, how important visual art was for me ever since I was a child. She also wants to share the news and tells it anyone who can listen. In the afternoon, my friend Zeynep comes for more speech therapy. My mom tells her that now I can draw beautiful pictures. Zeynep is utterly shocked. From reading internet stories about aphasia – since my stroke – she has found out that, strange things happen to people with aphasia. Like the one woman, who suddenly started to speak in a foreign language, or people who started to speak in a foreign accent. She thinks that it has also happened to me; that I can draw and paint all of a sudden, with no precedence.When we understand what she means, we all fall down with laughter. No, no, no parapsychology here, just normal progression after brain injury. Like addition and subtraction it all comes back to me gradually.

Thursday, February 5, 2009

international friends

In 2003 we moved to the Metropolitan Washington DC area, due to my husband’s relocation to National Institutes of Health. At that time we bought a condo in Bethesda, very close to NIH. When my son was close to 1 year old, I met a German lady, Ursula, who also had young kids. She introduced me to International Woman’s Group (IWG); a group mostly comprised of foreign mothers of toddlers and babies. A great majority of them came to DC because their husbands work at NIH or at the World Bank, for 2-3 years. The women are usually in their 30s, most of them have graduate or Postgraduate degrees, but are not allowed to work in the US due to their visa. So they are using the time here to have babies, and look after them. It is a very colorful group, with everybody to offer a lot of things. So I joined them, made good friends with quite a few. As everybody was raising their kids far away from home, we couldn’t rely on anybody but ourselves. We supported each other, we grew together as we learned the art of being a “mom”. After 1.5 years I decided to give back to this community by volunteering to be the president. I was one year past into my presidency, when I had the stroke.

For them it was quite a shock. For me it was a blessing, I was surrounded by love of friends.

After they learned of my demise, this is the e-mail message my two vice presidents send out to IWG community:

“Dear Board,
I am very sorry to let you know that Banu was taken seriously ill on Sunday night and is in hospital. She has had a stroke and is still in intensive care. From Mehmet I have learnt that her vital signs are good, she has no paralysis, she is conscious and seems to understand what is going on around her but is unable to respond verbally or in writing. Her mother is here, and she and Mehmet sound very calm and positive considering. Once over the shock of hearing such dreadful news, I imagine that you, like me, would all like to send your well wishes and offers of support and help. Having spoken to her family, I ask you, however, to hold off contacting her directly until I hear from Mehmet that they are ready for such attention. We do not want to overwhelm them at such a delicate and worrying time, however good our intentions. In the meantime, Zeyno and Naciye will pass on our messages and have promised keep us informed of any developments. Now, as the Board, I would like your input on how to proceed with informing the rest of IWG. And, indeed I would appreciate your thoughts on how much to tell the group at this point when we ourselves we know so little. My first reaction is to vote to avoid too much detail concerning her condition but let the group know that she is ill and Manuela and I will be taking over her role for now. As for the day-to-day running of IWG, I have spoken to Manuela and we will do our best to fit Banu's very roomy shoes. Everything else can wait until we have more news of our friend and leader. I trust that you all will treat keep this news in confidence until we decide together what should be done.

Anjali (and Manuela)”

So, they set out to give regular updates about my condition to each other:

Banu continues to improve. Besides receiving speech therapy, the newly started exersizes in writing are also going well. This Sunday she will be leaving the hospital (Suburban Hospital - 8600 Old Georgetown Rd, Bethesda, MD 20814, room #: 3201) and going home. Also this Monday she will be starting a program of speech therapy, 5 days a week, 1 hour a day Adventist Rehabilitation Hospital of Maryland'da (9909 Medical Center Drive,Rockville, MD 20850). Within two weeks they are thinking about enrolling in a program of speech therapy offered by the University of Michigan Aphasia Program-UMAP.
Banu and Mehmet are fighting this disease as hard as they can. They say that the support of friends makes a huge difference. But they are continuing their fight with limited information and in line with their current speech therapist’s advice. Therefore they want to get their hands on any information that is PROVEN successful. Also because they have to act fast and they have no access to information while at the hospital, they need your help in terms of forwarding them everything you can find about similar cases of recovery via e-mail. In order to help you to get accustomed with Banu’s condition please read the below quotation:
"Apraxia is a motor disorder in which volitional or voluntary movement is impaired without muscle weakness. The ability to select and sequence movements is impaired. The errors in apraxic speech are unpredictable. Apraxic speakers "grope" for the correct word; they may make several attempts at a word before they get it right. Apraxia that happens as a result of a incident causing brain damage is said to be "acquired". This can result from stroke, head injury, brain tumours, toxins, or infections. It can so severe that the individual is unable to initiate speech"."Aphasia is an impairment of language that affects the comprehension and production of spoken language and written words. Aphasia usually affects other means of communicating such as sign language, as well, because it is the communication areas of the brain and not the speaking or hearing apparatus that is impaired".

They informed themselves about my condition by inviting a Neurologist to talk to them.

They organized to find information:

“Now, more importantly, Mehmet said that they are in immediate need of help FROM EVERYONE IWG in:

1) Finding out about institutes, hospitals, clinics offering Early Intensive Speech Therapy for people suffering from “Expressive Aphasia” Banu’s chances of full recovery heavily rely on participating in an intense speech therapy. She is already working with a therapist at the hospital, yet she will not be able to take advantage of this intensive care program once she is discharged (possibly this Sunday). As Mehmet is spending most of his time with her at the hospital, he is not able to make any progress with his research and asking help from everyone in helping him to locate resources (i.e. people with knowledge/experience on the issue or existing programs, organizations that could provide them with pointers / options)

2) Investigating Insurance Benefits, Medicaid Disability Programs (e.g. info on benefits available in Montgomery County) that they could take advantage of in the upcoming months.

a) Hospital recommendations – Zeyno
b) Medicaid, Health and Human services - enrollment forms -Hilda
c) Laptop -Nicole
d) Contact associaton of speech therapy practitioners/clinics -Manuela
e) Disability support/insurance and therapy options -Mirvat “

They collected money among themselves – despite our protests:

“Dear Members,
Banu needs our help: our help with money. She is recovering well but she needs a lot more therapy before she starts talking again. Her condition (Expressive Aphasia) benefits from timely and intense therapy. She is determined and committed to a full recovery. To this aim the family have decided to move to Michigan temporarily to participate in an intensive program which would involve practising 7 hours a day, 7 days a week for 6 weeks, and that will cost around 30,000 dollars. This is a major financial burden given that her insurance will only cover one tenth of the sum.We know that we cannot raise enough money to bridge this gap yet we could significantly contribute to her recovery. Banu gave to IWG liberally. Let us follow her example and help ease their financial burden. Please give as generously as you can.Please make your checks payable to IWG, reference Banu's Recovery, and send them to… “

They prayed in many many languages:
“Dear Zeyno and ladies,
I am also very worried about Banu.” “ Since I heard about Banu by Anjali's e-mail, I have thought what I can do. Actually I started to make "Senbazuru" (paper cranes). As you may know, Paper folding, or "Origami" is one of Japan's unique traditional arts. One of the most popular folding objects is the crane. It is said that many cranes make a wish come true. Many cranes are given to sick people in order to wish them a fast recovery. Folding them, I pray for her quick recovery. I cannot make so many cranes for her by tomorrow, but I am making an effort to make it with my friends as soon as possible.

One Thursday morning, one week before I left for U-MAP, I was invited to a regular Coffee Morning event, where they surprised me with 1000 origami cranes and a check of over $ 3000.

“On Thursday morning, IWG members met with Banu and presented her with a Get-well present, ONE THOUSAND PAPER CRANES GARLAND! The wonderful gift was accompanied by donations from IWG members for helping Banu and her family cope through this condition. Get well soon Banu!”
At that time I was also volunteering for an Arts and Crafts activity within IWG. In order to explain children my absence, they made the children craft for me paper flowers.

After 2,5 years I sat down with my friends Nicole and Peter. They were the first ones who visited me at the hospital.
Although we weren’t very close at the time, we became very good friends afterwards.
So I asked them about what was going through their minds back then. What compelled them? They said: “One moment you were a full bodied, living breathing human being, the next moment you were in the hospital, unable to communicate. We knew you had a small child, we knew you didn’t have a family around you. So of course we came as soon as we heard to help as much as we could. We would have done it for anybody in that condition.”

Friends are very important. They lift each other up. My advice to you: Surround yourself with friends, from all walks of life, from different ages.