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.


Damien said...

Hi Banu My mum had a stroke Oct 8th 2008. She has Aphasia just like you describe. she is now 4 months post stroke and her speech is developing well (in my opinion) however she is suffering anxiety and coping skills and motivation very low. She used to be extremely active around the house, cooking etc. By the way how is your Husband coping, my Dad is very on edge. Do you have any words of advice or encouragement I could pass on?

Banu Turhan said...

Hi Damien,
So many things I can say:
1) Your mom WILL get better. No matter what. She has to work at it. She has to view herself like a newborn baby who is in the process of forming new neural connections. She has to learn to think, learn to transfer concepts into sounds, she has to make her tongue, lip, cheek muscles move in line with the sounds she is thinking.
Therefore she has to give herself credit with every little improvement. After all, even the newborns take up to three years to properly learn how to walk and talk. And that's with a brand new neural cells.
2) Everybody around her should give her support in terms of her daily exersizes: someone should sit infront of her (any able bodied person would do), tell a word, she should watch how it is done, then do it together with the person.Meanwhile keep looking at the other party to see how he keeps moving the mouth. After she has mastered that word, she has to repeat it on her own, give herself 3 seconds, then repeat, again, then repeat... until she can say it correctly. I don't know how old you are, but I found it very useful to read books to my 3 year old son.
Does she go to speech therapy? If not, she should.

Yes, things are not as they used to be, they are frustrating. But what is the alternative? Be a veggie? You have to go on for the sake of people who love you.
If she is depressed, there is an assesment your PCP can give to her to see whether she is clinically depressed, she may consider anti depression, or anti anxiety medication and or counseling or both, depending on doctor's advice. That is no simple matter, she needs to cope with the curve ball thrown at her, and to your dad and you for that matter, and you have to use all the arsenal in your power to get better. The first 6 months are critical, whatever you can do, you have to do...
When I got my stroke, a friend said: "Having a stroke was not on your schedule this year, was it?"

Yes it interrupts you as a family, you have to accept that fact. And then re-adjust.

4) Reach out:
You cannot cannot believe how much personal growth can come because of this, for all the family and friends. Organize family and friends to help mom. Your dad, you and most of all your mom will enjoy the company and appreciate the help.