I’m at home almost the whole day now – alone. My son goes to school from 9 to 3. Under normal circumstances you would say: “Hey! Great! What else do you want? You can relax the whole day.” But it is not like that at all. Like with any motor activity you have to practice, to improve. Well staying home alone doesn’t provide me with the best of conversation opportunities. So I have to be among people, conversing with people, yet I am not ready to work. Out of four main arteries that supply my brain, one is completely blocked, one is working at 20% level, when I lack sleep my heart and vascular system work overtime. So for example when I get a cold or flu, best course of action for me is to lie down and wait it over (given the six different medications I’m already taking), instead of taking two paracetamols a going to work. It is a matter of survival I guess.
So for the moment going to a workplace is not an option. I inquire about possible volunteering opportunities: at the local library (no: the only position is shelving books), at the office of my speech therapist (no: we only employ professionals), at my Condo’s management office (no: we don’t do volunteers – which is a mystery to me as they certainly can do with some help around the office). At the local YMCA (Please fill in this form and we will call you)…
I thought that with my work credentials, doors for volunteering would be wide open, so much so that I would have a hard time picking and choosing. Well, so much for being overwhelmed by offers…
Finally my son’s school’s founder/principle agrees for me to come to the office to help. My son goes to a Montessori school – Lone Oak Montessori of MD. It is managed by this very dedicated, very delightful young lady of 75 years. She has a soft spot in her heart for my condition because her husband of many years, suffered from a brain attack like mine, 15 ago, just as they were ready to retire. They did have plans and all for their new life and this happened. He didn’t die, but was left painfully handicapped on the left side of his body, and lost his speech. Later on he taught himself to sign language, and could speak with his wife again. Our principle calls him affectionately, “My computer”, as he is so smart. (Bob Swan has since passed away in 2008. God bless his soul).
So I start volunteering at Lone Oak Montessori School. After I say farewell to my son at the classroom door, I start at the desk in the corridor that doubles as an office. I had thought that in the mornings, while the staff is busy at the door, I could answer the phone or give messages to people. Contrary to my expectations, though, there are no phone calls. Everything seems to be running smoothly here. The office at the main campus seems to be handling everything. Hmmm. So what work can I do here? Staff and teachers go out of their way to create me some work. One day I cut paper to size, next day I am in the gluing business. I love helping this way, and God knows they need help. But speaking opportunities while cutting pink 3”x5” s is quite limited, it is all manual work. At the same time I have made a commitment…
I must start looking at other speaking opportunities while fulfilling my commitment at my son’s school.
Wednesday, September 1, 2010
Therapy on my own: Writing
The first act of writing – outside of writing exercises- was two letters. I wrote them to my son and my husband. In case something happened to me I wanted them to know what I felt for them.
Now what I want to do is to write the aphasia experience.
Why do I want that? It is a morbid subject. I don’t want to muse on it. The chances are the moment I start writing about it I am going to think about it. That will bring feelings of anxiety, I don’t want to do it. Yet I have to do it.
After the stroke, after the initial shock of the stroke, our family had no idea what we would be facing in the future, no idea of how much I would recover. At the hospital I remember the speech therapist preparing us maybe for a life without any speech at all. Then I remember my friend Zeyno, doing oodles of research on the net, discovering a person, who lived through aphasia, found his voice again and told the story about it.
I remember how impressed we all upon listening to a University of Michigan testimonial on the web about a woman recover her speech completely after her stroke.
So as much as don’t want to think about my stroke, I must speak up to tell people what they may be facing. That there is hope, it is not the end of the world.
So, I decide to write an essay to Newsweek magazine. I have been a Newsweek fan for quite a long time: I like Anna Quindlen, their arts section; I even developed a certain taste for George Will’s column, though I disagree with every word he says… I especially enjoy their “My Turn” section, where ordinary people write essays about extraordinary, or even seemingly very mundane topics with a very interesting twist.(*: This was before Newsweek completely changed its design and its content). I read this essay in every Newsweek . So I start writing.
Writing about my experience, I find, is neither a catharsis nor a happy experience. It is almost a job to be done. In about a month I have the essay down on paper. Then I ask for my husband’s feedback. Incorporating the feedback I go to a friend of mine, and for her neutral opinion. With her as my sounding board I write and re-write the essay several times. Once I feel ready, I submit the essay to the Newsweek, “My Turn” website. Then forget about it.
Exactly three months later, I get an e-mail back:
“Dear Banu,
Thank you for your submission. We would like to consider it for publication for Health Triumphs, our health-related, web-only My Turn. Please let me know if you are still interested.”
Yes, I’m interested. I’m interested to get the story out to the masses, not only to stroke patients, but to everyone, who is a potential patient.
We go back and forth, clarifying a few things and editing a few things… Finally on Wed, 4/11/08, the essay is published in Newsweek’s web edition.
I am glad. Not only have I done a nice thing for the family of stroke patients, it is a nice stroke on my ego too.
Now what I want to do is to write the aphasia experience.
Why do I want that? It is a morbid subject. I don’t want to muse on it. The chances are the moment I start writing about it I am going to think about it. That will bring feelings of anxiety, I don’t want to do it. Yet I have to do it.
After the stroke, after the initial shock of the stroke, our family had no idea what we would be facing in the future, no idea of how much I would recover. At the hospital I remember the speech therapist preparing us maybe for a life without any speech at all. Then I remember my friend Zeyno, doing oodles of research on the net, discovering a person, who lived through aphasia, found his voice again and told the story about it.
I remember how impressed we all upon listening to a University of Michigan testimonial on the web about a woman recover her speech completely after her stroke.
So as much as don’t want to think about my stroke, I must speak up to tell people what they may be facing. That there is hope, it is not the end of the world.
So, I decide to write an essay to Newsweek magazine. I have been a Newsweek fan for quite a long time: I like Anna Quindlen, their arts section; I even developed a certain taste for George Will’s column, though I disagree with every word he says… I especially enjoy their “My Turn” section, where ordinary people write essays about extraordinary, or even seemingly very mundane topics with a very interesting twist.(*: This was before Newsweek completely changed its design and its content). I read this essay in every Newsweek . So I start writing.
Writing about my experience, I find, is neither a catharsis nor a happy experience. It is almost a job to be done. In about a month I have the essay down on paper. Then I ask for my husband’s feedback. Incorporating the feedback I go to a friend of mine, and for her neutral opinion. With her as my sounding board I write and re-write the essay several times. Once I feel ready, I submit the essay to the Newsweek, “My Turn” website. Then forget about it.
Exactly three months later, I get an e-mail back:
“Dear Banu,
Thank you for your submission. We would like to consider it for publication for Health Triumphs, our health-related, web-only My Turn. Please let me know if you are still interested.”
Yes, I’m interested. I’m interested to get the story out to the masses, not only to stroke patients, but to everyone, who is a potential patient.
We go back and forth, clarifying a few things and editing a few things… Finally on Wed, 4/11/08, the essay is published in Newsweek’s web edition.
I am glad. Not only have I done a nice thing for the family of stroke patients, it is a nice stroke on my ego too.
End of therapy as we know it
February 21, 2008 the end of speech therapy for me. Jan also lets me go. This time I feel ready. I feel that I can stand on my own two feet now. So it is not a problem. I’m not afraid to make my own phone calls. I am ready to approach complete strangers. I’m ready to make my voice heard at PTA meetings…
That is just my feeling though, the returning of confidence that I can lead a normal life. Nothing may have changed outside but on the inside I feel ready to face the world.
A lot of things are still challenging:
The weakness of the right cheek and tongue,
My speech being still slurry (especially when I try to sacrifice clarity for speed)
Speaking vocabulary
Plus everything going south when I feel sleep deprived, meaning less than 8 hours of quality sleep.
But I can manage on my own now. I have plans.
That is just my feeling though, the returning of confidence that I can lead a normal life. Nothing may have changed outside but on the inside I feel ready to face the world.
A lot of things are still challenging:
The weakness of the right cheek and tongue,
My speech being still slurry (especially when I try to sacrifice clarity for speed)
Speaking vocabulary
Plus everything going south when I feel sleep deprived, meaning less than 8 hours of quality sleep.
But I can manage on my own now. I have plans.
Harry Potter
Between coming from Istanbul and the new years I make no progress on the speech front, partly because I am alone again, with very little opportunity to speak. OK I must tackle that somehow, but what to do?
Reading out loud helps, but I have three issues with this:
1) Print size. After the stroke I have trouble reading small print, nobody offers any explanation for that. There seems something odd with my vision overall. I don’t seem to be able to visually focus on any one thing anymore. I go through the world visually experiencing it like my peripheral vision all the time. You know the feeling when you look onto something long enough that everything else kind of disappears, but you still see them. My experience has been a mild form of this. Nevertheless I am much more comfortable reading big print.
2) Interesting material: If I’m going to sustain this over long time, then like any exercise program I have to enjoy it.
3) Audience: It works much better if somebody is with me, so that I am forced to do it for at least 1 hour.
Meanwhile that November the 5th film in the Harry Potter series is released: “The Order of the Phoenix”. Mehmet and I go and see the film. I am a Harry Potter fan. I say this with great pride. I have read each book a few times, every two years or so, I read then again as bedside reading. The books a beautifully constructed, beautifully written, humorous and serious at the same time. The fifth book came out during the year of my post partum depression, in 2003. It helped me to go through the pain of that first year, like the return of a dear old friend. The first two books are in paperback, hence small print, but from third book onward they are in hardcover, nice and easy for me to read.
“May I read this to you?” I ask Mehmet after he comes home from work one day, after we put Kaan to bed, of course. Mehmet is ready to do anything that will help me progress. But he is not a fiction fan. He can spend hours reading scientific material, but I have never seen him reading fiction. Well, for my sake he will endure, I say to myself and we start. What we thought will last maybe for a week of 15 minutes of exercise turns out to be ongoing. After two months we still continue reading “Harry Potter”, 40 minutes to one hour sessions each evening. The beauty of the whole thing is multiple:
• Mehmet enjoys listening to the exploits of the famous boy wizard “who lived”, as much as I enjoy reading them.
• The sessions are long, they are a real exercise, to the point that I get tired in the end. They are long enough to have an impact.
• Right after each session I take my SSRI and go to bed, which, I believe helps with re-wiring in my brain. There is no conclusive evidence of that, but it works for me.
We continue reading until the end of the 3rd book. Then Mehmet becomes so intrigued about Harry Potter that he reads the sixth and seventh book by himself!
Fifteen days into the whole exercise, a friend of ours, who we haven’t seen for a few weeks tells me: ” There is much improvement in your speech! What did you do?” I smile from ear to ear, albeit for a second (later my left side droops – never mind).
It is amazing that there should be a noticeable improvement in just 15 days! It is like in skincare commercials: “You’ll notice a difference in just 15 days!” Only this time it is true!
There are many ways for practicing, but like many exercise regimens, if you enjoy, it becomes much more fun and it becomes sustainable. Besides I think that reading to an adult audience makes a great difference. First of all it becomes interactive, the expectancy of feedback is there. You become a little bit anxious, but not too much and in a safe environment.
Reading out loud helps, but I have three issues with this:
1) Print size. After the stroke I have trouble reading small print, nobody offers any explanation for that. There seems something odd with my vision overall. I don’t seem to be able to visually focus on any one thing anymore. I go through the world visually experiencing it like my peripheral vision all the time. You know the feeling when you look onto something long enough that everything else kind of disappears, but you still see them. My experience has been a mild form of this. Nevertheless I am much more comfortable reading big print.
2) Interesting material: If I’m going to sustain this over long time, then like any exercise program I have to enjoy it.
3) Audience: It works much better if somebody is with me, so that I am forced to do it for at least 1 hour.
Meanwhile that November the 5th film in the Harry Potter series is released: “The Order of the Phoenix”. Mehmet and I go and see the film. I am a Harry Potter fan. I say this with great pride. I have read each book a few times, every two years or so, I read then again as bedside reading. The books a beautifully constructed, beautifully written, humorous and serious at the same time. The fifth book came out during the year of my post partum depression, in 2003. It helped me to go through the pain of that first year, like the return of a dear old friend. The first two books are in paperback, hence small print, but from third book onward they are in hardcover, nice and easy for me to read.
“May I read this to you?” I ask Mehmet after he comes home from work one day, after we put Kaan to bed, of course. Mehmet is ready to do anything that will help me progress. But he is not a fiction fan. He can spend hours reading scientific material, but I have never seen him reading fiction. Well, for my sake he will endure, I say to myself and we start. What we thought will last maybe for a week of 15 minutes of exercise turns out to be ongoing. After two months we still continue reading “Harry Potter”, 40 minutes to one hour sessions each evening. The beauty of the whole thing is multiple:
• Mehmet enjoys listening to the exploits of the famous boy wizard “who lived”, as much as I enjoy reading them.
• The sessions are long, they are a real exercise, to the point that I get tired in the end. They are long enough to have an impact.
• Right after each session I take my SSRI and go to bed, which, I believe helps with re-wiring in my brain. There is no conclusive evidence of that, but it works for me.
We continue reading until the end of the 3rd book. Then Mehmet becomes so intrigued about Harry Potter that he reads the sixth and seventh book by himself!
Fifteen days into the whole exercise, a friend of ours, who we haven’t seen for a few weeks tells me: ” There is much improvement in your speech! What did you do?” I smile from ear to ear, albeit for a second (later my left side droops – never mind).
It is amazing that there should be a noticeable improvement in just 15 days! It is like in skincare commercials: “You’ll notice a difference in just 15 days!” Only this time it is true!
There are many ways for practicing, but like many exercise regimens, if you enjoy, it becomes much more fun and it becomes sustainable. Besides I think that reading to an adult audience makes a great difference. First of all it becomes interactive, the expectancy of feedback is there. You become a little bit anxious, but not too much and in a safe environment.
Leaving Istanbul
My mother in law’s surgery goes so well that one day after she comes home, she tries to cook and do laundry. There is going to be only a little amount of radioactive therapy, that’s all. After she recovers fully, we are on our way to Bethesda, our home.
Upon my return, I visit Jan, my speech therapist. She probes me and she has news! One month of forced talking in Istanbul, from early morning till late in the evening has taken its toll on me. Miraculously my speech is much more fluent now. The good news is that the fluency has translated directly into English, too.
Upon my return, I visit Jan, my speech therapist. She probes me and she has news! One month of forced talking in Istanbul, from early morning till late in the evening has taken its toll on me. Miraculously my speech is much more fluent now. The good news is that the fluency has translated directly into English, too.
My first encounter with old friends and relatives
I am anxious. I don’t know why but I am anxious about seeing my friends. Somehow I fear that when they see me, they will feel sorry for me. I detest that feeling of course, as far as I know nobody in her right mind enjoys being pitied. But at this point I must talk about my personality, why this feeling is especially hard on me: “All my life, I thought of myself as a strong, confident, self assured, assertive person, who doesn’t give up, who even performs better under pressure, freely distributes advice… “
Now I feel like a vulnerable, wounded animal that has to show her soft underbelly.
The personality transformation I have experienced since my stroke has been very powerful. The stroke has been a great lesson in teaching me humility. Since then 15 months have passed. You would think that if I have learned my lesson, if I take everything easy, then why the anxiety? My mind tells me that my true friends will be so concerned about my health that they will be just relieved to see me well and alive. Yet the mind doesn’t always work tandem with the feelings, does it?
I call one of my closest friends up and tell her I have come. As soon as I hang up she leaves work, jumps onto one of the vaporettos that connects the European side of Istanbul with the Asian side and is at my mom’s apartment within hours. Then two days later four of my friends come. I have shared with them that I am not ready for a larger gathering, I tire easily and when there is more than one conversation going on my speech suffers. So we meet one by one with a great many of my closest friends. Sometimes they come to us, sometimes we go to them. What a delight! Of course all my anxiety is rootless. We never miss a beat in terms of connecting right where we left. We can even laugh about my speech deficiency as if it is a science experiment. The best part is: They know it is the old me, who loves them and cherishes them It so happens that I have a new feature, like a broken arm. Yes it is a handicap, but hey, who hasn’t got them?
Two of my friends have lost their dad’s to leukemia the past year. After having experienced all the pain associated with having a loved one suffer and eventually die, they too have grown a lot, emotionally. The more you live through, the more things you are a veteran of the more you grow. Growth must have a component of age, because things happen to your own body, that you never have guessed before, but also, growth must have another component outside of your physical age.
Now that we are middle aged, in our fourties, everything is much richer in scope. There are feelings I would read about in books in my twenties and think that I understood them, or feelings that were so foreign to me that I couldn’t fathom understanding them. Now I know that nothing is too far away, everything can happen to anybody anytime. Unless you are in their shoes, you cannot ever know how they feel or think. We should accept everybody as they are, nothing more nothing less. Who are we to criticize one another? And I know also another fact. I know that with time, this belief can also change. Just as my beliefs and knowledge have changed from my teens to twenties to my fourties then they can also change towards my fifties, sixties… With one’s individual and collective experiences it is bound to change, isn’t it?
Now I feel like a vulnerable, wounded animal that has to show her soft underbelly.
The personality transformation I have experienced since my stroke has been very powerful. The stroke has been a great lesson in teaching me humility. Since then 15 months have passed. You would think that if I have learned my lesson, if I take everything easy, then why the anxiety? My mind tells me that my true friends will be so concerned about my health that they will be just relieved to see me well and alive. Yet the mind doesn’t always work tandem with the feelings, does it?
I call one of my closest friends up and tell her I have come. As soon as I hang up she leaves work, jumps onto one of the vaporettos that connects the European side of Istanbul with the Asian side and is at my mom’s apartment within hours. Then two days later four of my friends come. I have shared with them that I am not ready for a larger gathering, I tire easily and when there is more than one conversation going on my speech suffers. So we meet one by one with a great many of my closest friends. Sometimes they come to us, sometimes we go to them. What a delight! Of course all my anxiety is rootless. We never miss a beat in terms of connecting right where we left. We can even laugh about my speech deficiency as if it is a science experiment. The best part is: They know it is the old me, who loves them and cherishes them It so happens that I have a new feature, like a broken arm. Yes it is a handicap, but hey, who hasn’t got them?
Two of my friends have lost their dad’s to leukemia the past year. After having experienced all the pain associated with having a loved one suffer and eventually die, they too have grown a lot, emotionally. The more you live through, the more things you are a veteran of the more you grow. Growth must have a component of age, because things happen to your own body, that you never have guessed before, but also, growth must have another component outside of your physical age.
Now that we are middle aged, in our fourties, everything is much richer in scope. There are feelings I would read about in books in my twenties and think that I understood them, or feelings that were so foreign to me that I couldn’t fathom understanding them. Now I know that nothing is too far away, everything can happen to anybody anytime. Unless you are in their shoes, you cannot ever know how they feel or think. We should accept everybody as they are, nothing more nothing less. Who are we to criticize one another? And I know also another fact. I know that with time, this belief can also change. Just as my beliefs and knowledge have changed from my teens to twenties to my fourties then they can also change towards my fifties, sixties… With one’s individual and collective experiences it is bound to change, isn’t it?
Something Unexpected
Upon their return to Istanbul my parents in law go through a routine check-up, as they do to get their medicare benefits. Surprisingly Mehmet’s mom shows high Thyroid levels in the blood. As Mehmet also has Thyroid problems he sends his mom to a specialist friend he has gone to medical school with. Nothing out of line he assumes, probably mom will start taking some medication to control her levels, that’s all.
Then one day in October he tells me that it is worse than anticipated. Mom has cancer. His friend told him the bad news over the phone. What to do?
Thank heavens it is a very slow progressing sort of a cancer, a nodule in the thyroid gland. The gland has to be taken out, after that we will see. We talk about whether or not tell the ‘cancer news’ to Mehmet’s mom. Eventually we – he – decides against it. It is better for the overall mood of mom not to know, we think. I know it is quite controversial here in the United States. Patient’s rights come first, and a doctor has to tell his patients. Plus everybody has a do-it-yourself attitude where -patients- want to take charge. But in Turkey we have a different attitude, not better or worse I think, just different, more fatalistic, more interconnected in the family… Because we fear that mom, if she hears the word ‘cancer’ will worry so much that it will not help at all with the healing process. Mehmet arranges the surgical operation for November, with the doctor, he tells mom that it is a benign tumor but needs to be taken out never the less.
We begin to pack our luggage for a trip to Istanbul. We will surprise everybody by suddenly showing up and knocking at their door. Why the secrecy? Because we don’t want them to do any preparation for us, which they will definitely do, if they get wind of our coming.
We knock Mehmet’s parents door at 9 o’clock in the evening.
Actually Kaan knocks at the door. Mehmet’s dad opens. His eyes become as large as saucers. “Nermin! Nermin! Quick come here!!!!!” We kiss, we hug. They are already in their pjs. Kaan laughs a lot. After maybe half an hour we leave them behind and drive to my parents. Again Kaan knocks the door. Mom answers. “Ahhh!” She grabs Kaan and hugs him. Within minutes we become a bundle of joy. It is amazing. Plus it is the first time my dad sees me after the stroke. He seems doubly happy.
The next few days pass with jet lag and a lot of telephone calls. Arrangements, friends, relatives… Mehmet’s mom is very upbeat. She is overjoyed that his son+family came all the way from the USA just for her operation. We can hear the pride in her voice because her son has honored her like this. Mehmet’s parents are people with very few material demands. Even their home is arranged that way. There is no “stuff’ no ‘clutter’. Everything has its use, they don’t buy anything unless it is absolutely necessary and they try to give away things they don’t use anymore. Which is in stark contrast with our home where we tend to hoard anything and everything. As an ex brand/marketing manager I can say that my parent in law’s lifestyle is a marketing professional’s nightmare. It is very amusing indeed. With the downturn in economy I make a mental note to learn a bit from that lifestyle. Because they are not into material things, our being there for the operation matters for them very much.
Nowadays I understand it completely, and it is not bogus: The most important drive in life is not “power” or “money” it is clearly “LOVE”. Everyone wants to be loved. That is what we strive for. But the way we understand the manifestations of love is different. Some value gifts, some value compassion, some obedience, some praise, some physical love… But in the end we all look for love. As for Mehmet’s parents, the language of love is in the deeds.
Then one day in October he tells me that it is worse than anticipated. Mom has cancer. His friend told him the bad news over the phone. What to do?
Thank heavens it is a very slow progressing sort of a cancer, a nodule in the thyroid gland. The gland has to be taken out, after that we will see. We talk about whether or not tell the ‘cancer news’ to Mehmet’s mom. Eventually we – he – decides against it. It is better for the overall mood of mom not to know, we think. I know it is quite controversial here in the United States. Patient’s rights come first, and a doctor has to tell his patients. Plus everybody has a do-it-yourself attitude where -patients- want to take charge. But in Turkey we have a different attitude, not better or worse I think, just different, more fatalistic, more interconnected in the family… Because we fear that mom, if she hears the word ‘cancer’ will worry so much that it will not help at all with the healing process. Mehmet arranges the surgical operation for November, with the doctor, he tells mom that it is a benign tumor but needs to be taken out never the less.
We begin to pack our luggage for a trip to Istanbul. We will surprise everybody by suddenly showing up and knocking at their door. Why the secrecy? Because we don’t want them to do any preparation for us, which they will definitely do, if they get wind of our coming.
We knock Mehmet’s parents door at 9 o’clock in the evening.
Actually Kaan knocks at the door. Mehmet’s dad opens. His eyes become as large as saucers. “Nermin! Nermin! Quick come here!!!!!” We kiss, we hug. They are already in their pjs. Kaan laughs a lot. After maybe half an hour we leave them behind and drive to my parents. Again Kaan knocks the door. Mom answers. “Ahhh!” She grabs Kaan and hugs him. Within minutes we become a bundle of joy. It is amazing. Plus it is the first time my dad sees me after the stroke. He seems doubly happy.
The next few days pass with jet lag and a lot of telephone calls. Arrangements, friends, relatives… Mehmet’s mom is very upbeat. She is overjoyed that his son+family came all the way from the USA just for her operation. We can hear the pride in her voice because her son has honored her like this. Mehmet’s parents are people with very few material demands. Even their home is arranged that way. There is no “stuff’ no ‘clutter’. Everything has its use, they don’t buy anything unless it is absolutely necessary and they try to give away things they don’t use anymore. Which is in stark contrast with our home where we tend to hoard anything and everything. As an ex brand/marketing manager I can say that my parent in law’s lifestyle is a marketing professional’s nightmare. It is very amusing indeed. With the downturn in economy I make a mental note to learn a bit from that lifestyle. Because they are not into material things, our being there for the operation matters for them very much.
Nowadays I understand it completely, and it is not bogus: The most important drive in life is not “power” or “money” it is clearly “LOVE”. Everyone wants to be loved. That is what we strive for. But the way we understand the manifestations of love is different. Some value gifts, some value compassion, some obedience, some praise, some physical love… But in the end we all look for love. As for Mehmet’s parents, the language of love is in the deeds.
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