MaxedOutMama
Tuesday, March 22, 2005
My Testimony: Introduction
I never thought I would do what I am going to do, which is to attempt to convey my experience of being severely and repetitively brain damaged by a disease medical science and I can only curb and not control.
I am driven to do this by reading the confident statements of so many that Terri Schiavo and so many like her are not "aware". Awareness is a spectrum of states, as I have learned to my cost over 20 years. Awareness is not an externally measurable quality. The quality of someone's life who cannot communicate it is not a matter which can be reliably determined by a court or by doctor. At best, they can make an educated guess. The best that all our medical science and the efforts of the courts can offer us is the probability that we are forcing unknowing and unaware people to die of thirst instead ending the existence of unknowing ones. How probable is it that in any such death we are ending the life of a person who knows and understands what is happening? I don't know, but recent studies show that it is far, far more than 10 percent.
I read one study that said 58% of people diagnosed as being PVS were no longer in that state within 3 years. Since the change in diagnosis is predicated on someone's ability to act and manifest rather than to think, it is a reasonable assumption that any change in consciousness preceded the change in diagnosis. Thus we are forcing people to prove what we should probably assume, and sending people to the morgue long before they are dead.
You who are so certain that Terri would not want to live and is in fact dead may be so wrong, yet how can you know your error unless those like me speak? Maxima mea culpa. Please hear me out before you blithely consign another person to Terri's fate. The first thing that you must understand is that simple mental functions are often stored in small areas of the brain, whereas the neurological complex we call consciousness is highly flexible. In short, knowing left from right or being able to point to something is a far easier ability to lose than your awareness of yourself as a human being. It is also easier to get back your consciousness than your ability to control your body or even form words.
Last week I woke up in the middle of the night and knew Russian. The words of a Russian poem ran through my head, and I knew both the words and the meaning of the words. I last studied Russian over 23 years ago. Last month I did not know Russian; this month I can puzzle my way through Pravda in Russian. This is how it usually happens. I don't get back abilities such as language in small pieces - I get them back in giant chunks. It is the simpler things, like knowing that I must get dishes wet before scrubbing them with soap, that cost me hours and hours of effort to relearn.
To understand me, and people like me, hold these seemingly contradictory sets of facts in your head. The mean of last set of IQ tests I took was 159. I can't envision any linear progression. I can't mentally hold a straight line in my head. It evaporates. I can hold a three-dimensional structure in my mind with no problem. I would not recognize my own mother or brothers on the street if I met any one of them. I would recognize her voice or either of my brothers' voices. I have learned to read at least three times. In December, once again I had to figure out how to fill out a check. In December, I routinely read news articles in Spanish, French, Portuguese, German and Dutch. Any ability I don't use all the time I tend to lose (because my problem is ongoing - it is much more serious than Terri's) and the more trivial such an ability is the more likely I am to lose it. My life requires some creative problem solving. I enjoy my life immensely. I constantly wonder why so many people seem so sad.
The significance of being unable to envision a straight-line progression in my mind is that if I try to manipulate a sequence such as Monday, Tuesday, Wednesday, Thursday, Friday, I can't. It took me years and years of struggling to be able to reliably know that Tuesday comes after Monday to understand the nature of what I can't do. Once I understood that, I stuck the days of the week and series of numbers in a chain of squares, and now I have no problem knowing that Tuesday always comes after Monday, and 3 is greater than 1. It's that simple, and that complex. A year is a chain of circles that are months that are a chain of week box-chains, connect at the ends to form a circle, which is interlinked to a long chain of circles that is the progression of the years. Finally, I know what date it is. Perhaps to you that seems confusing. To me it seems delightfully obvious.
After having experienced being totally paralyzed for a brief period, being unable to see the ground I walk on, being mostly deaf, being unable to speak, being psychotic, being unable to remember the year, my last name, my phone number, my address - after all of that, what I have learned is that suffering is impossible to categorize, as is consciousness. I can tell you that nothing I have experienced from my illness was so painful as the loss of my father. The suffering you fear is the suffering that life brings us all, healthy and unhealthy. Nothing I have ever experienced is as painful as the grief, pain and worry that a parent with a sick child suffers.
If you fear my fate, you might as well just go shoot yourself now, because my fate is the fate of everyone. Life brings us some joys, some worries, some sorrows, some comforts, some stresses and much love if we are wise enough to love others. For me, the stresses I face are somewhat different than those you face - but subjectively speaking, the experience is no different. I am 43. I was infected with the disease that causes my neurological problems in my teens. I have lived approximately half my life as a person with no disability, and approximately half my life as a person with what you would consider a disability. In all honesty, the last 12 years of my life when I have been most affected have been the most enjoyable, the richest, the most adventurous.
The one thing I no longer am is afraid. I don't fear the things you fear. One thing I hope anyone who reads what I have to say about my experiences will walk away with is greatly reduced fear and an improved understanding of what it means to be a human being. What you fear when you look at someone is ill or disabled often has little to do with that person's real state, and what you fear about such a fate is probably not worth fearing.
Go about the rest of your day in peace, you who have read this. I do not judge you for your prejudices or your fears. I can remember having had them myself. Please do not judge me by your standards.
I am driven to do this by reading the confident statements of so many that Terri Schiavo and so many like her are not "aware". Awareness is a spectrum of states, as I have learned to my cost over 20 years. Awareness is not an externally measurable quality. The quality of someone's life who cannot communicate it is not a matter which can be reliably determined by a court or by doctor. At best, they can make an educated guess. The best that all our medical science and the efforts of the courts can offer us is the probability that we are forcing unknowing and unaware people to die of thirst instead ending the existence of unknowing ones. How probable is it that in any such death we are ending the life of a person who knows and understands what is happening? I don't know, but recent studies show that it is far, far more than 10 percent.
I read one study that said 58% of people diagnosed as being PVS were no longer in that state within 3 years. Since the change in diagnosis is predicated on someone's ability to act and manifest rather than to think, it is a reasonable assumption that any change in consciousness preceded the change in diagnosis. Thus we are forcing people to prove what we should probably assume, and sending people to the morgue long before they are dead.
You who are so certain that Terri would not want to live and is in fact dead may be so wrong, yet how can you know your error unless those like me speak? Maxima mea culpa. Please hear me out before you blithely consign another person to Terri's fate. The first thing that you must understand is that simple mental functions are often stored in small areas of the brain, whereas the neurological complex we call consciousness is highly flexible. In short, knowing left from right or being able to point to something is a far easier ability to lose than your awareness of yourself as a human being. It is also easier to get back your consciousness than your ability to control your body or even form words.
Last week I woke up in the middle of the night and knew Russian. The words of a Russian poem ran through my head, and I knew both the words and the meaning of the words. I last studied Russian over 23 years ago. Last month I did not know Russian; this month I can puzzle my way through Pravda in Russian. This is how it usually happens. I don't get back abilities such as language in small pieces - I get them back in giant chunks. It is the simpler things, like knowing that I must get dishes wet before scrubbing them with soap, that cost me hours and hours of effort to relearn.
To understand me, and people like me, hold these seemingly contradictory sets of facts in your head. The mean of last set of IQ tests I took was 159. I can't envision any linear progression. I can't mentally hold a straight line in my head. It evaporates. I can hold a three-dimensional structure in my mind with no problem. I would not recognize my own mother or brothers on the street if I met any one of them. I would recognize her voice or either of my brothers' voices. I have learned to read at least three times. In December, once again I had to figure out how to fill out a check. In December, I routinely read news articles in Spanish, French, Portuguese, German and Dutch. Any ability I don't use all the time I tend to lose (because my problem is ongoing - it is much more serious than Terri's) and the more trivial such an ability is the more likely I am to lose it. My life requires some creative problem solving. I enjoy my life immensely. I constantly wonder why so many people seem so sad.
The significance of being unable to envision a straight-line progression in my mind is that if I try to manipulate a sequence such as Monday, Tuesday, Wednesday, Thursday, Friday, I can't. It took me years and years of struggling to be able to reliably know that Tuesday comes after Monday to understand the nature of what I can't do. Once I understood that, I stuck the days of the week and series of numbers in a chain of squares, and now I have no problem knowing that Tuesday always comes after Monday, and 3 is greater than 1. It's that simple, and that complex. A year is a chain of circles that are months that are a chain of week box-chains, connect at the ends to form a circle, which is interlinked to a long chain of circles that is the progression of the years. Finally, I know what date it is. Perhaps to you that seems confusing. To me it seems delightfully obvious.
After having experienced being totally paralyzed for a brief period, being unable to see the ground I walk on, being mostly deaf, being unable to speak, being psychotic, being unable to remember the year, my last name, my phone number, my address - after all of that, what I have learned is that suffering is impossible to categorize, as is consciousness. I can tell you that nothing I have experienced from my illness was so painful as the loss of my father. The suffering you fear is the suffering that life brings us all, healthy and unhealthy. Nothing I have ever experienced is as painful as the grief, pain and worry that a parent with a sick child suffers.
If you fear my fate, you might as well just go shoot yourself now, because my fate is the fate of everyone. Life brings us some joys, some worries, some sorrows, some comforts, some stresses and much love if we are wise enough to love others. For me, the stresses I face are somewhat different than those you face - but subjectively speaking, the experience is no different. I am 43. I was infected with the disease that causes my neurological problems in my teens. I have lived approximately half my life as a person with no disability, and approximately half my life as a person with what you would consider a disability. In all honesty, the last 12 years of my life when I have been most affected have been the most enjoyable, the richest, the most adventurous.
The one thing I no longer am is afraid. I don't fear the things you fear. One thing I hope anyone who reads what I have to say about my experiences will walk away with is greatly reduced fear and an improved understanding of what it means to be a human being. What you fear when you look at someone is ill or disabled often has little to do with that person's real state, and what you fear about such a fate is probably not worth fearing.
Go about the rest of your day in peace, you who have read this. I do not judge you for your prejudices or your fears. I can remember having had them myself. Please do not judge me by your standards.
Comments:
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Although I would never be so presumptuous as to judge another person, I am always willing to judge myself and in my opinion (which is the sibling of judgement), this is THE bravest and most glorious post that I have ever read. Ever. It is brave because few people would have the courage to shine a revealing light on themselves so that others can understand or appreciate the possible experience of another. It is glorious because with raw honesty it celebrates life in all it's wonder with all it's uniqueness. You and your experiences have made you the person you are and I am honoured beyond words that I have been blessed by the ability to grow, learn, and understand because f your words. Thank you MoM...for sharing such a glorious part of yourself. Your revealing light created a small revelation for me.
I am humbled, amazed and incredibly grateful for this post. I salute your courage and wish you much good.
len
len
# posted by 
: 8:18 AM
: 8:18 AM
Michele,
I think what makes a difference is whether a person feels as if they have control over what they can control. For whatever reason, some people seem to view their lives as a series of things that happen to them and others view their lives as a series of things they do with what they've got. I have met people with very limited intellectual abilities who fell in the second category and seemed to be having a lot of fun, and I've met people who have terrible disabilities much much worse than mine who were coasting through life on a wave of enjoyment. When we turn away in fear from those who look or act funny we often shortchange ourselves.
Brian,
As far as I can figure it out, you're right. I'll add this too. I think there is an upper limit to suffering, but none to happiness and joy. From my experience and from observing others, when some things shut down in your life other things open up.
One of the happiest people I've ever met was a man in his 70's who was working at a convenience store. He had hurt his back and had an operation to fix it that had left him a paraplegic. The doctors had told him he'd never walk again; seven years later he was shuffling a bit but moving around quite zippily with no crutches or braces, just having a party there in the store all by himself all day long. He was working to pay off medical bills but he was not bitter; he told me he'd had a gas proving them wrong ever since he figured out he could move his big toe. He seemed triumphant.
Len,
The same to you!
I think what makes a difference is whether a person feels as if they have control over what they can control. For whatever reason, some people seem to view their lives as a series of things that happen to them and others view their lives as a series of things they do with what they've got. I have met people with very limited intellectual abilities who fell in the second category and seemed to be having a lot of fun, and I've met people who have terrible disabilities much much worse than mine who were coasting through life on a wave of enjoyment. When we turn away in fear from those who look or act funny we often shortchange ourselves.
Brian,
As far as I can figure it out, you're right. I'll add this too. I think there is an upper limit to suffering, but none to happiness and joy. From my experience and from observing others, when some things shut down in your life other things open up.
One of the happiest people I've ever met was a man in his 70's who was working at a convenience store. He had hurt his back and had an operation to fix it that had left him a paraplegic. The doctors had told him he'd never walk again; seven years later he was shuffling a bit but moving around quite zippily with no crutches or braces, just having a party there in the store all by himself all day long. He was working to pay off medical bills but he was not bitter; he told me he'd had a gas proving them wrong ever since he figured out he could move his big toe. He seemed triumphant.
Len,
The same to you!
MoM... thank you. Again. I read your post earlier today, left your page open, and came back to it again and again. You have opened my eyes to something I entertained only once a while ago, and dismissed it because it didn't make sense to me then. It makes perfect sense now. How insightful! If only more people would express as openly and honestly as you have today. It takes a woman of enormous caliber to share her soul this way. You are such a woman.
Thank you, for being the wonderful, spirited, creative person that you are. I celebrate the joy you have shared with me today.
Much love to you.
Thank you, for being the wonderful, spirited, creative person that you are. I celebrate the joy you have shared with me today.
Much love to you.
Mama,
I can't even find words for this. Put simply, I am awestruck.
And I agree, difficulty does make a person exponentially stronger--fear is replaced by serenity and gratitude for the things we DO have.
I'm so glad we can all see this-- THANK YOU for sharing your story with all of us.
I can't even find words for this. Put simply, I am awestruck.
And I agree, difficulty does make a person exponentially stronger--fear is replaced by serenity and gratitude for the things we DO have.
I'm so glad we can all see this-- THANK YOU for sharing your story with all of us.
Dean,
I know you are terribly busy, but I also know you are a superb writer. At some point when you have time, could you possibly write an account of what those people said and how they perceive life?
I know it is presumptuous to ask, but what has struck me so intensely over the last few weeks is that so many people see lives they don't understand through a mask of fear and uncertainty.
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I know you are terribly busy, but I also know you are a superb writer. At some point when you have time, could you possibly write an account of what those people said and how they perceive life?
I know it is presumptuous to ask, but what has struck me so intensely over the last few weeks is that so many people see lives they don't understand through a mask of fear and uncertainty.
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