I have a condition known as antiphospholipid syndrome—how’s that for a mouthful. It’s associated with Lupus and is when your body causes your blood to clot leading to life-threatening blood clots that can occur anywhere in the body. Since developing the condition, I’ve gone on to have about 15 transient ischemic attacks, 3 strokes, 2 kidney infarctions, 1 pulmonary embolism, a mild heart attack, and a dissected artery. Needless to say, I’ve been in the hospital due to this disorder a lot. There is no cure and treatment is to keep the blood thin with regular Coumadin (AKA warfarin).
When you are on Coumadin, you have to have bloodwork that measures something known as the INR (international normalized ratio). This informs the doctor whether Coumadin is keeping your blood sufficiently thin to prevent infarctions. Because my APS along with all my autoimmune diseases is severe and responds poorly to Coumadin, I have to have bloodwork every week, two times a week. I have a machine that allows me to check at home and then I go to the Steeplechase Cancer Center to see my hematologist for my weekly check-up. My doctors have to keep my INR between 2.5 and 3.5, preferably around 3, as I’ve infarcted at 2.1, which is rare.
And every week I measure my INR, we dip or rise on a rollercoaster. This past Friday, I was 3.7, which was too high and required me to hold my medication for 2 days and drop down to 6 mg of Coumadin from my usual 7 mg. When I tested yesterday, I was dangerously low at 1.4 requiring me to take a Lovenox shot as emergency treatment today and tomorrow. And the shot is painful! Man does it hurt.
My numbers are so erratic, the nurses at the cancer center all look at me with trepidation when I come in with my paper with my latest result from the lab next to the treatment room. They greet me with a suspicious look of “What number are you today? Are we good?” Most of the time it’s not. Although when it’s high I usually shrug it off because it’s better high then low. Low means possible death, high just means “don’t cut yourself with a razor shaving”.
Today it’s a day where my emergency go bag is ready, my medication and doctor lists are ready, as is my Do Not Resuscitate form. Ugh. So taking a wild ride on the rollercoaster.
Tuesday, September 26, 2017
Friday, September 22, 2017
Words, Words, and Gobbledygook
Words are a passion of mine. I have been in love with words ever since I was a child and they were undecipherable mysteries, lines and curves arranged on pages. To me a book was filled with possibility and this translated at a young age into a love of theater. The best of worlds: words and performance. I could take the words I would turn over in my head and bring them to life—listening to their sound, the rhythm of a sentence. When you have a left-hemisphere stroke chances are your language centers, roughly defined as the Broca and the Wernicke parts of the brain (although new research has shown language is a whole-brain activity) will be impacted in a negative way. We engage with language in three general ways:
I have permanent damage in the speech production and reception regions. With damage to Broca I move between being frustrated because I cannot form the right words and it comes out all jumbled together or I cannot find the right words to say in the first place. I think everyone can relate to challenges in Broca. Most people have had moments in their life where they say the wrong words, mispronounce words, or simply cannot find the words to speak in the moment. For me, it just occurs a bit more often than the average person. What is most frustrating for me is the damage in my Wernicke region.
It took years to figure out it was not a problem with my hearing but a problem with decoding what was said to me. When I had my first stroke in this region, I described it as a Charlie Brown moment. Everyone started to sound further and further away and their words became mumbles like the adults in Charlie Brown. Everyone had a case of the “Mwa Mwas”. After I was stabilized and the clot broke apart or just continued into a larger blood vessel and stopped bothering my brain, the damage was done—subtly. And it came in appearance of hearing loss.
I say “what” a lot. I have days when I can’t understand what is being communicated to me. Words sound run together with only 1 or 2 distinguishable words in the process. And the more stressed I am, the worse it gets. When I said “what”, no matter how many times the person says the same sentence I still hear it as undecipherable. This then leads to a frustrating situation of the person speaking louder and getting more annoyed because I still don’t understand. As such, I find myself now saying something like “can you rephrase that?” If, of course, I can remember that phrase in the moment.
Yet, I have found there is a general loss of recent years. There is a sluggishness in my overall comprehension. And that translates to my writing as much as it translates to my speaking and listening. It is hard to describe the sensation that happens, but it is as if I am pushing against a heavy wall with all of my weight and it barely budges. I find myself staring at the screen for thirty minute stretches of time, the laptop heating up my lap, as I try to figure out what I’m going to say and what I’ve already said. What used to take minutes, takes hours. Words simply do not flow as they once did in my brain. They move like a car in heavy traffic, where everyone is tailgating. Start, stop, start, stop, stop, stop, stop, start… I also describe it as if I’ve hit a wall of words—I am too close to distinguish them all and must step back and carefully read aloud in my mind so that I understand what is being said.
There is a sadness when I think about my life in theater surrounded by beautiful words, by rhythm, by fluency. It is a world that is far away now, a lifetime ago. In the place of these beautiful moments are episodic periods of gobbledygook and mwa mwas. All because of small bits of damage to the delicate, spongey tissue that is my brain.
- we receive it and decode it (using hearing or visuospatial aspects of our brain + memory + Wernicke’s speech center);
- we produce speech (using Broca’s region—a combination of motor + language- and context-specific memory—roughly); and
- we read it.
I have permanent damage in the speech production and reception regions. With damage to Broca I move between being frustrated because I cannot form the right words and it comes out all jumbled together or I cannot find the right words to say in the first place. I think everyone can relate to challenges in Broca. Most people have had moments in their life where they say the wrong words, mispronounce words, or simply cannot find the words to speak in the moment. For me, it just occurs a bit more often than the average person. What is most frustrating for me is the damage in my Wernicke region.
It took years to figure out it was not a problem with my hearing but a problem with decoding what was said to me. When I had my first stroke in this region, I described it as a Charlie Brown moment. Everyone started to sound further and further away and their words became mumbles like the adults in Charlie Brown. Everyone had a case of the “Mwa Mwas”. After I was stabilized and the clot broke apart or just continued into a larger blood vessel and stopped bothering my brain, the damage was done—subtly. And it came in appearance of hearing loss.
I say “what” a lot. I have days when I can’t understand what is being communicated to me. Words sound run together with only 1 or 2 distinguishable words in the process. And the more stressed I am, the worse it gets. When I said “what”, no matter how many times the person says the same sentence I still hear it as undecipherable. This then leads to a frustrating situation of the person speaking louder and getting more annoyed because I still don’t understand. As such, I find myself now saying something like “can you rephrase that?” If, of course, I can remember that phrase in the moment.
Yet, I have found there is a general loss of recent years. There is a sluggishness in my overall comprehension. And that translates to my writing as much as it translates to my speaking and listening. It is hard to describe the sensation that happens, but it is as if I am pushing against a heavy wall with all of my weight and it barely budges. I find myself staring at the screen for thirty minute stretches of time, the laptop heating up my lap, as I try to figure out what I’m going to say and what I’ve already said. What used to take minutes, takes hours. Words simply do not flow as they once did in my brain. They move like a car in heavy traffic, where everyone is tailgating. Start, stop, start, stop, stop, stop, stop, start… I also describe it as if I’ve hit a wall of words—I am too close to distinguish them all and must step back and carefully read aloud in my mind so that I understand what is being said.
There is a sadness when I think about my life in theater surrounded by beautiful words, by rhythm, by fluency. It is a world that is far away now, a lifetime ago. In the place of these beautiful moments are episodic periods of gobbledygook and mwa mwas. All because of small bits of damage to the delicate, spongey tissue that is my brain.
Friday, September 8, 2017
Purpose Part II: The Road Not Taken
My purpose blog garnered quite a bit of feedback; I think because it seemed so downcast and somewhat hopeless. I should write that I am not without hope nor do I feel the weight of a day-to-day search for meaning. Most of the time I am actually quite happy and feel that, while I feel I lack some centerpoint on which to direct my soul, I do feel I have important actions to take and relationships to cultivate and value. This is quite a full life and I think one that most of us have. Yet there are those who hold an enviable key to a calling in life—a point in the stars to gravitate toward that in some ways can be even spiritual in nature. I see this in my students who come to my school—day in and day out they show the brave and wonderful calling of bringing the divine spark to the world so that it may feel just a bit more hopeful and a bit more soothed at being in this incredibly beautiful, yet scary bit of rock spinning at a mind-boggling speed in the middle of space. I have several friends who have music, visual art, or creative writing at their centerpoint—called to bring something new into the world that hasn’t been here before. Then there are friends who have gone on to be nurses, psychologists, and medical doctors—both allopathic and alternative. And then there are those who have children—choosing to feel a pull toward the nurturing center of mother- and fatherhood. These are examples of purpose. At times, I think purpose is a luxury, as much as it is often felt to be a necessity—yet without these courageous souls engaging in these activities, human life would be decidedly worse-off.
For myself, I feel stripped of the luxury in many respects. I have transformed my “disabilities” and “losses” into missions and positive events. In some ways, critical events such as my school, which I recognize places such a central role at fostering individuals to bring to bear on the world around them their purpose. And its effects are global in nature. I have students from around the world seeking to learn a range of intellectual and spiritual paths. And that is and will always be an important and lasting legacy I will leave the world when my time here is done. But something is still missing for me.
But it does not make me sad. It makes me search. The boundaries of my life have delimited my purpose. There are a host of “I can’ts” and that is okay. This makes the mystery of what is Katie to do with her life—that is deep inside her veins. This is, I think, an ultimate challenge of self-knowledge; of answering the eternal question of Who am I? Only for me this question is more of Who am I if I am not…? The world of human culture has paths that we are to tread. There is the path of the psychologist and he or she does XYZ. The artist walks down a less defined path, but a path of ABC nevertheless. But if all of these paths are overgrown then I must tread down, to quote Robert Frost, the road “less travelled by”.
For enjoyment, Robert Frost’s “The Road Not Taken”
Two roads diverged in a yellow wood, And sorry I could not travel both And be one traveler, long I stood And looked down one as far as I could To where it bent in the undergrowth;
Then took the other, as just as fair, And having perhaps the better claim, Because it was grassy and wanted wear; Though as for that the passing there Had worn them really about the same,
And both that morning equally lay In leaves no step had trodden black. Oh, I kept the first for another day! Yet knowing how way leads on to way, I doubted if I should ever come back.
I shall be telling this with a sigh Somewhere ages and ages hence: Two roads diverged in a wood, and I— I took the one less traveled by, And that has made all the difference.
For myself, I feel stripped of the luxury in many respects. I have transformed my “disabilities” and “losses” into missions and positive events. In some ways, critical events such as my school, which I recognize places such a central role at fostering individuals to bring to bear on the world around them their purpose. And its effects are global in nature. I have students from around the world seeking to learn a range of intellectual and spiritual paths. And that is and will always be an important and lasting legacy I will leave the world when my time here is done. But something is still missing for me.
But it does not make me sad. It makes me search. The boundaries of my life have delimited my purpose. There are a host of “I can’ts” and that is okay. This makes the mystery of what is Katie to do with her life—that is deep inside her veins. This is, I think, an ultimate challenge of self-knowledge; of answering the eternal question of Who am I? Only for me this question is more of Who am I if I am not…? The world of human culture has paths that we are to tread. There is the path of the psychologist and he or she does XYZ. The artist walks down a less defined path, but a path of ABC nevertheless. But if all of these paths are overgrown then I must tread down, to quote Robert Frost, the road “less travelled by”.
For enjoyment, Robert Frost’s “The Road Not Taken”
Two roads diverged in a yellow wood, And sorry I could not travel both And be one traveler, long I stood And looked down one as far as I could To where it bent in the undergrowth;
Then took the other, as just as fair, And having perhaps the better claim, Because it was grassy and wanted wear; Though as for that the passing there Had worn them really about the same,
And both that morning equally lay In leaves no step had trodden black. Oh, I kept the first for another day! Yet knowing how way leads on to way, I doubted if I should ever come back.
I shall be telling this with a sigh Somewhere ages and ages hence: Two roads diverged in a wood, and I— I took the one less traveled by, And that has made all the difference.
Wednesday, September 6, 2017
Can Someone Tell Me Where I Put my Purpose?
This week has been a tough week and it’s only Wednesday.
Life comes with stressors—things like flat tires, which I experienced over the weekend. It also comes with arguments, which I also had on the weekend with my significant other. And life comes with a total lack of knowing what the heck your purpose should be. And illness has a sneaky way of making knowing your purpose or the color of your parachute to quote the famous career counseling book, even that much more impossible because you are so limited.
Before I became disabled, I was a budding psychotherapist. I had a great job that I loved working as a Dual-Diagnosis program manager—in short I ran a treatment program for men and women suffering from mental illness and addictions. And not a day went by that I didn’t feel I was where I needed to be. I thought this was where God had intended to put me. I was certain of it. Even today, my pain specialist and I talk about the current challenges in the field and he says that I have an obvious love for the population and an expertise. But I can’t work in the field. I can’t get a license where I live because I have epilepsy and have and continue to suffer from strokes.
So... out the window went my job.
Before that I was a playwright. And I was good. I won awards and had my play produced. I went to musical theater workshops at ASCAP in New York and knew a lot of people on Broadway. And then it all went silent. No more stories in my head wanting to be told on stage. No more job in theater. Nothing. And I wasn’t even sick then. My then purpose just stopped, ceased to be, nadda, nothing, zilch.
Oh and I was a professional pianist and singer, but my strokes took that away too.
When I was left with nothing. The only thing I had were college degrees that felt more like very expensive pieces of paper zip-tied to a huge debt. And I had a computer, Internet access, and a bed. So sitting on my bed with a Dummies Guide for HTML coding, I created a graduate school in interreligious studies. It started off with 5 people just after I became totally disabled and has grown to a full-fledged university with hundreds of students in undergraduate and graduate studies—most of who study for free and the rest pay a small—I mean really small fee because I needed help paying for the online services. But it is not my purpose. It is my mission: to make higher education accessible and affordable to people like me: sick or poor. And to put social justice or care of the environment as a universal part of education. Again, not my purpose.
Now this begs the question of what is a purpose. Most would say my college sounds like a purpose, but it doesn’t feel like it. My students would likely tell you what they are studying is their purpose; particularly my religious students who are called to study their faiths and to be leaders in their faith. They have perhaps a mission AND a purpose. But I still feel purposeless.
My illness has created a challenge of tight limits. So the question becomes how do you find out your calling when so many doors are closed? This is the challenge of living with a chronic illness—your body places limits on you that you have to start thinking creatively to feel you still have something to work for.
Life comes with stressors—things like flat tires, which I experienced over the weekend. It also comes with arguments, which I also had on the weekend with my significant other. And life comes with a total lack of knowing what the heck your purpose should be. And illness has a sneaky way of making knowing your purpose or the color of your parachute to quote the famous career counseling book, even that much more impossible because you are so limited.
Before I became disabled, I was a budding psychotherapist. I had a great job that I loved working as a Dual-Diagnosis program manager—in short I ran a treatment program for men and women suffering from mental illness and addictions. And not a day went by that I didn’t feel I was where I needed to be. I thought this was where God had intended to put me. I was certain of it. Even today, my pain specialist and I talk about the current challenges in the field and he says that I have an obvious love for the population and an expertise. But I can’t work in the field. I can’t get a license where I live because I have epilepsy and have and continue to suffer from strokes.
So... out the window went my job.
Before that I was a playwright. And I was good. I won awards and had my play produced. I went to musical theater workshops at ASCAP in New York and knew a lot of people on Broadway. And then it all went silent. No more stories in my head wanting to be told on stage. No more job in theater. Nothing. And I wasn’t even sick then. My then purpose just stopped, ceased to be, nadda, nothing, zilch.
Oh and I was a professional pianist and singer, but my strokes took that away too.
When I was left with nothing. The only thing I had were college degrees that felt more like very expensive pieces of paper zip-tied to a huge debt. And I had a computer, Internet access, and a bed. So sitting on my bed with a Dummies Guide for HTML coding, I created a graduate school in interreligious studies. It started off with 5 people just after I became totally disabled and has grown to a full-fledged university with hundreds of students in undergraduate and graduate studies—most of who study for free and the rest pay a small—I mean really small fee because I needed help paying for the online services. But it is not my purpose. It is my mission: to make higher education accessible and affordable to people like me: sick or poor. And to put social justice or care of the environment as a universal part of education. Again, not my purpose.
Now this begs the question of what is a purpose. Most would say my college sounds like a purpose, but it doesn’t feel like it. My students would likely tell you what they are studying is their purpose; particularly my religious students who are called to study their faiths and to be leaders in their faith. They have perhaps a mission AND a purpose. But I still feel purposeless.
My illness has created a challenge of tight limits. So the question becomes how do you find out your calling when so many doors are closed? This is the challenge of living with a chronic illness—your body places limits on you that you have to start thinking creatively to feel you still have something to work for.
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