Wednesday, January 28, 2009

Financial side of things

As we don't yet know how much therapy I'm going to need in the future, we don't know how much of that we can afford, and how much financial gap there is. Mehmet makes the decision that whatever needs to be done, needs to be done as quickly as possible. The first 3 months are critical, and then the first six months. Somehow the pliability of the brain decreases with time, we find out. The more you can recover earlier, the better it is. Although there are exceptions this is the general wisdom. So my husband is ready to do everything, regardless of the cost, as early as possible. He says, we will figure it out later. I have no say in that. On the one hand, I am afraid that it will bring us near financial ruin, on the other hand I envision myself being speechless or talking only basics like a toddler, therefore being only a burden on my family for ever, I also opt for the former... The more we can do to help me go back to my old self as quickly as possible, the better it is. My husband also decides that we should cover this within the means of our family. We decide it is OK to get help from our parents, but nobody else. Hence, we turn down offers from friends for financial help. We have a lot of friends dispersed around the US and in Istanbul, our home city. They cannot come and be with us, provide emotional and hands on help, but they want to help never the less. The one thing they can offer is fundraising for therapy. But we say no to that and instead, we ask for information, for research, whatever they can do in terms of gathering on line knowledge. They are very happy to do this.

But this incidence makes it once more very clear that we need a universal health coverage here in the US. If we were employed in any of the European countries, we wouldn't be in this situation at all. Therapy costs would be included in insurance policies. In Germany, we find out, Stroke patients are immediately shipped out to centers of excellence, where they receive full day therapy.
This is what I have written about the need for insurance coverage, to be presented at a "Toast Masters" club meeting, 2 years after my stroke, before Barack Obama got elected.

"A case about universal health insurance

Throughout the next couple of minutes I will try to persuade you, why universal health care is a must and not, as some people think, a “nice to have” .Also, excuse me in advance for having to be a bit depressing. Health matters are always an emotionally charged subject.

I want to take you to the year 2050, for a quick peek into the future:

Well, in this future there is no universal health care. On the contrary, Medicare and Medicaid also have been eliminated. The government is very small. Every service government used to provide, has been privatized, and running for profit…

So, in this future there is no public education. If parents want education for their kids, they have to teach the kids themselves, or they have to pay 20 000 $ a year for a private institution.

There is no public police force. So that if you are a victim of a crime, the first thing the police asks you is your crime-insurance card. No crime-insurance no police prosecution.

There is no fire department either. You have to have fire-insurance before you call the fire department.

The list goes on and on. For everyday activities like infrastructure, people have to pay as they use it for example roads or bridges. For more risky services like police or fire, people buy insurance. Rich people thrive, the poor are on the streets, uneducated and sick…

That is one scenario. It is a conservative-capitalist dream scenario maybe. But there is another scenario, a more altruistic scenario, where the more fortunate among us give back to the less fortunate. Especially when human life is concerned.

So, what does it to do with universal health insurance? EVERYTHING!

I assure you, that every one of us in this room, however inconceivable it may seem, is going to die sooner or later. Death and taxes are inevitable. But the problem is how to do that, and not leave a terrible financial and emotional burden behind. Because with the current system this is what’s happening.

Sooner or later most of us is going to face a major and expensive disease:
1- Cancer: We are going to have cancer, it is not a matter of “if”, it is a matter of “when”. One in two men and one in three women get cancer over their lifetime.
2- Cardio Vascular Diseases: 1 in 3 of Americans have some sort of CVD, as a result of which you may have bypass surgery or stroke related rehab.
When we get an expensive disease the options are: go bankrupt, or not receive the necessary treatment.
The #1 reason for bankruptcy in America, responsible for more than half of bankruptcies filed nation-wide, happens to be ill or failing health.

Let’s take my case: The mean lifetime cost of ischemic stroke in the United States is estimated at $140 048. To Medicare, the negotiated costs that is. Plus it only contains a limited number of rehab visits, or limited mental health coverage, when you are depressed. Just my speech therapy in 2006 alone cost $30 000.

Let’s take early stage breast cancer for instance: nine months of treatment: No hospitalization involved: $225 000

1) Not everyone has health insurance: Data released by the Census Bureau show that the number of uninsured Americans stood at a record 46.6 million in 2005, with 15.9 percent of Americans lacking health coverage.
2) Among the insured many claims are denied. In 2003 one whistleblower in Humana testified that officers get higher bonuses when they deny claims.

There must be a better way! US of A is the richest nation on earth. A behemoth. The others don’t even come close to our GDP. If we cannot provide for our sick, it is a shame. There shouldn't’t be a price tag on human life.
We have done it with education, with police, with fire, with infrastructure, with the army…. For this nation, whatever we set our hearts and minds into there is no escape, we do it.
This election year, we have a chance. Whoever you favorite candidate, McCain, Obama, Clinton… Push for it, the power is in your hands. .. "

Monday, January 26, 2009

I don't know my ABC's what about Math?

In the hospital, various times I tried to do simple math, about after one week I could do addition, not adding 817 + 492 by heart mind you, but simple math like 4+5. The second week, at home, subtraction seemed to make sense. But however much I tried, multiplication didn't make any sense at all. My mind wasn't able to grasp the concept of 5*6. You see, I was able to add and subtract, counting fingers. So I was able to understand it by projecting it onto something simpler, like a preschooler. But Multiplication requires a higher, a more conceptual level of understanding I guess. Now that my son is in Kindergarten, I can understand why they can teach him addition but not multiplication yet. I guess a certain level of abstract thinking ability has to form before human brain is able to do higher math.
Not being able to do math is a problem, because, I am responsible of the family financials. My husband doesn't know how much money we have, or the bank accounts. I am doing all the taxes and keep track of the retirement accounts too... Now he feels like a fish out of the water. We try to figure out how we can make the payment to University of Michigan Aphasia center. It costs an arm and a leg, $30 000 for six weeks of treatment. Our insurance covers only a portion of it. Speech therapy, like physical therapy, is limited, after a certain number of visits you are done.
In our case total number of visits is limited to 60, that will be expired even before we go there.
Hence how much we can dish out is important.
But: I can't recall the words, I can't speak, I can't write, I can't do math... How on earth am I going to know how much money we have got, and communicate it?
OK, I know the basic concepts: I go to our filing system, which for me consists of a deep plastic rectangular bucket, with past years financial statements in it. I fish out our bank statements, IRA accounts, stocks etc. Then on a piece of paper I copy letter by letter bank accounts and the sums in them. I do it for all our non formidable assets. Gathering this document of 10 lines, takes me maybe 5 hours. But in the end I do it, give it to my husband. I don't know whether this takes some of the anxiety off for him also. But I do it, if only to see, whether I can do it. A small proof of what I am still capable of.

In the third week after the stroke, I regain my ability to multiply, and in the fourth week to divide. In that order exactly.
Week 1: addition
Week 2: subtraction
Week 3: multiplication
Week 4: division
Isn't it amazing? Exactly the order I have learned them at grade school. First in first out: Who would have thought that FIFO system was in action also in our brain too.

Thursday, January 22, 2009


Towards the end of the first week at home, I have one more encounter in mind: The encounter with the computer. I am a bit afraid of that. Because, just as I have difficulty with writing and math,I fear whether I'm able to recognize the interaction with the computer. Everything I used to do before is a question mark in my mind. Will I be able to do it - to think it, to feel it - as I used to do? I sneak into the guest room, where the family computer is. I remember to turn it on - that is easy. The screen comes up, I move the mouse around, click on some things, that is also OK, I can navigate the several buttons and drop down menus. This all make sense to me, I remember what the are for. Now I go to the Internet to find out whether I can send any e-mail. Boy, my friends will be so happy to get news directly from me. OK, click on yahoo, click on mail...
Uh Oh! There comes the user id and the password prompts. For the first time I look at the keyboard: what a mess! I don't recognize any of the letters. Now, you must understand, I wasn't a fluent typist before either, but I could navigate around the keyboard. Now all is Chinese to me (and I don't know any Chinese, mind you). I know the password by heart; let's say it is "daisy12", I know that it start with the letter "d", and then "a", "i", "s" etc. I am trying to match the letter "d" in my mind, to the letter "d" on the key board. they are 88 buttons on the keyboard. I am scrutinizing each and every button, in order to see, whether there is anything that will match what I have in mind for a "d". And in the end I give up trying, there is no "d" in sight, or rather, I don't know what a "d" looks like; it could look like this "@" or this "%" or this "öİ" as far as me is concerned.

Mehmet comes and helps me with the password and stuff... At least now, even if I cannot remember how to write - even with the key board - I can read my mail, that is great, in and on itself. Plus, I am eager to relearn my ABC's, perfect timing because now my son (3 years old at the time), can learn it together. He already knows more than I, so he can teach me!

Saturday, January 10, 2009

My own Pygmalion

I can now pronounce many phonemes, especially the ones that I can see. Like: m, b, v, f and then t, d... Sandy says not to dwell too much on the vowels. Because mine are not clean at all. Like Eliza Doolittle, my "O"s resemble "Aow"s my "e"s are more like "ieie"s. Because of the half paralysis of the tongue, I have trouble with every long vowel especially with "a" and "oi", which require you position the tongue in a "Y" sound. Even today it is hard for me to produce the "Y" sound. Also glottal sounds pose a real problem like "K and G" Because I cannot see them, I cannot imitate them at all. I say It is a problem, because my son's name is Kaan. So far I cannot say his name.
One day Sandy drops in with an idea. It has occurred to her while driving. In order to say Kaan, we are going to work on saying the word "OK". This word I can say, although clumsily still I can say it, because the "K" is in the middle position. When I start with "O", and the meaning of OK is clear to me as a very familiar word, without thinking I can say OK. It is like a shortcut in my brain. Remember even 48 hours after the stroke I could write my own name. It is similar to that. The most used words must be wired, engraved in many different pathways of the brain, so that even one part of the brain is gone, they can be recollected via different shortcuts.

"Now" Sandy says, try to say "OK, Kaan!" after a few tries, I can say it. "OK, Kaan!" I repeat. Over and over again. This is a happy day for me. Although I cannot yet say "Kaan" I can say "OK, Kaan!" And that is enough for me. A very very happy day indeed!

* HINT: If you cannot say any particular sound, try them in various positions: Starting position, middle position, ending position... Especially try combining them with word you know since you were a Baby.

Friday, January 9, 2009

The consistent web of unwavering love 1

Isn't it wonderful! The sun, and the wind, and the trees, and the sky, and the sounds that come from the living room when I open my eyes... Each day is a great gift.

The schedule we have put together works like a clock work. Everyday after early morning speech therapy with Sandy, I come home, and two friends visit me, one in the morning, one in the afternoon to work with me. Usually we repeat the lesson that Sandy had for that day, or whatever I had difficulty in. Over and over, nobody is getting tired. They try to teach me the sound "r" and "l". I have great difficulty with the "l" sound because either my tounge doesn't bend the slight curl that you need or I cannot touch the back of my upper teeth with the tip of my tounge, or maybe both. With Nicole we work on the "l" sound, we even try rolling my tounge around a pencil. It bears a lot of resemblence with my fair lady(!). With Zeynep we work on the "sh" and the short "i" sounds. She gives me a lot of hard time. With Zeyno we work on everything. We also chat, laugh and just have fun.

It is great to have my mom around too. She turns the house into a real home. She cooks, she looks after Kaan, she adds warmth to everything she does. But most of all, she encourages me beyond imagination. She has such an unwavering belief in me. Notices every progress and tells it to me lightheartedly. You cannot underestimate the healing power of all the people around you. They genuinely care. They care from the heart and it shows, in the belief, in the actions.

Thursday, January 8, 2009

Begin from the beginning

It is the first Saturday after leaving the hospital. Emre, my brother has to go back to Istanbul. Mom is staying for an indefinite period to help us. Mehmet and I go to the hospital, for my blood work. Every day I have to do that so that we know how to adjust the blood thinner - Coumadine . The drug interacts with every chemical intake - including of course food, so that we have to adjust the dose. If the bloodwork comes back too low, I have to increase the dose, if the bloodwork comes too high, I have to take Vitamin K to bring it back to a normal level. It is the same Suburban Hospitals lab that we go to.
While I am waiting in the waiting room, I begin to feel funny. I feel cold in the hands and arms, and the same "something is definitely wrong inside my head" feeling returns. The same feeling of the stroke. Am I having another stroke? I alarm my husband. He, in return alarms who ever is around. Immediately a triage team is assembled from nowhere. They lay me on a stretcher and wheel me into the emergency room. There I wait and wait, to me and Mehmet it seems like an eternity. The same nightmare again: ER, electrodes on my chest, CAT scan... Somewhere between ER room and MRI room I scribble on my Magna doodle " Take care of Kaan" and show it to Mehmet. His eyes tear immediately, so do mine. This time I am sure that I'm going for good. I want to say so many things to my husband, to my son... So much unfinished business... MRI machine is the worst, it takes 40 minutes inside the sacrophagus, you don't know what you have, what you will be. By the time I come out Mehmet is relieved. I don't have anything the doctor's say.
What was is it then? What has just happened? Nobody has an explanation.
We come home eventually, I am exhausted. I long for my bed, and sleep and sleep.
One week after the incidence we figure out that it was a panic attack, one of many I am to experience in the future. We now know that it was a panic attack, but neither know what triggered it, how to prevent it and there is always the possibility of it being the real thing. So you say to yourself better safe than sorry and you call people for help.