Well well well. It seems I still have a viral load. I can tell by Judy's voice if the news is bad, and even though she used her best "it'll all be okay" language, I know she's not very hopeful about my case. Continuing the treatment is still my best option, but the odds of clearing the disease become less favorable every time I have a test which shows a viral load. My current viral load is "less than ten," which of course is minuscule, but it adds another two weeks to the length of my treatment, bringing it up to a full year. Fifty-two weeks. Still, there are no guarantees either way. A friend of mine had no viral load after four weeks and had what looked like a successful treatment in every way, but her virus returned within six months. There's still more of a chance of a successful outcome than an unsuccessful one, so I'll keep going.
I got the news on Thursday afternoon, and not too long after I hung up with Judy I found myself in a Mood. Even before that I'd been feeling disgusted with the world I live in and wondering what the hell I was doing in it, repulsed as I was by the media frenzy surrounding the death of Michael Jackson. I wasn't busy at work, so I was idling away the afternoon on the internet, and everywhere I turned people were talking about nothing but this overrated pop star and what a tragedy it all was. A tragedy? Please. I went into mourning for six months when Paul Wellstone was killed, and also after the assassination of Benazir Bhutto. But I'm afraid that the death of a pop culture celebrity leaves me cold. After I talked to Judy my gloom increased to the point where I was in danger of a full-blown attack of existential angst. "Why?" I wailed to myself, "Why am I trapped in this particular time and place? Why do I live in this celebrity-obsessed society, surrounded by illiterates, half of whose conversation is about what they watched on television last night?" My entire life seemed tinged with futility and I wondered why I bothered with any of it. I live in a time and place where I don't fit, where much of what I say and think is incomprehensible to most of the people I know and where the accepted recreations bore me nearly to death. Why couldn't I have been born a hundred years ago? Waa.
Eventually I recognized that I was feeding something that should not be fed, and I stopped. Depression is a common side effect of Interferon, and I'm grateful for the anti-depressant I'm taking. I can't imagine what I would feel like without it. I was able to stem the tide the other day, and even in the middle of it I reminded myself that, despite its seeming to be endless, it was just a mood and it would pass. It did pass, but it left me with a hangover, and I see now that my mood has been gradually darkening over the last couple of months. That's a relief, actually, because, no matter what I'm feeling at any given time, I have trouble recalling that I ever felt any other way. All of my memories are colored by the current emotional state, whether it's joy or grief or despair. So I'd unconsciously assumed that I'd spent my whole life trudging through the days without much enthusiasm for anything, and it was a relief to see that not only was it not true but the current lack of vim and vigor was probably caused by the Interferon.
I don't always lack vim and vigor, either. I haven't got as much energy as I'm used to having, but even so I manage to get quite a lot done without feeling overwhelmed. I feel that I haven't got enough time to get everything done, but not that I don't have enough energy. It's only occasionally that I succumb to the downward pull and find myself wondering why I was born. I know the way to deal with these passing moods, too. On Thursday on my way home from work I had a little argument with myself about whether or not to go to the women's meeting that night. "I'm tired," I whined. "I want to go home and cozy up with a book and go to sleep early." But now is not the time to upset my routine. I have a habit of going to the women's meeting every Thursday night, and I don't want to break that habit at this point in time. So I went to the meeting and when it was my turn to share I talked a bit about my afternoon, after which another woman shared a bit of her experience with Interferon. She said the same thing I feel, that she was grateful for the anti-depressant, and she was grateful for the habits of recovery which she'd established long before she began the treatment.
So I'm not alone, and the bad days come and go, just as they do under other circumstances. The viral load will disappear and I will make it through the next nine months of treatment without succumbing to despair and hopelessness.
Saturday, June 27, 2009
Saturday, June 20, 2009
More things in heaven and earth
Oh my God! I got fan mail! I was so excited to see a comment on my last post that I nearly fell over. And it was from someone I don't even know! I checked out PSPam's profile and discovered that she is a fellow Hep C patient and has two blogs, both of which are chock full of all sorts of useful information about Hepatitis. I haven't had time to look too closely at her archives, but I would bet that her Hep C story is much more informative than mine about the actual disease and its treatment. Probably it would be hard to find a blog devoted to Hepatitis C that was less informative about the disease than mine.
Another week has passed and not much has changed. I've noticed occasional bruising at my injection sites, and also some itching and redness, but none of it is worrisome. A friend of mine told me that she went through gallons of cortisone cream to deal with the itching on her thighs from the shots, so before I started the treatment I went out and bought a tube of the stuff, which I have yet to use. Possibly it takes awhile for that side effect to show up. When I started the treatment, I was instructed to do one shot on each side of each thigh and then one shot on each side of my abdomen, which would give me six weeks of healing before I had to use an area again. My first four shots went fine, but the first abdomen shot turned out to be the last. For one thing, I was a bit squeamish about sticking a needle into my belly. There's nothing in my thighs but muscle and fat, but my abdomen contains quite a lot of essential working parts. Even though I knew, intellectually, that the needle was nowhere near anything that could be damaged, I still didn't like it. I did the shot anyway, though, and then discovered that the injection site was bruised and swollen for a couple of days, which didn't happen on my thighs, so I decided to skip the abdomen shots. I now have a four-week rotation of shots on my thighs, and that seems to be working just fine. I'll keep an eye on the injection sites and see if cortisone cream is indicated.
On the thyroid front, things are looking up. All of my symptoms have lessened, including the deafness, which is a huge relief. I'm not "all better," but I think I might be getting there. I won't have my thyroid tested again until early August, and I hope the symptoms will have abated completely by that time. It takes six weeks to get accurate lab results after a change of dosage, so we should know where we stand by then. I don't know how long it takes to stabilize, but from the way I feel now, my guess is that my levels will still be slightly low at the six-week point. Dr W needs to bear in mind that Interferon can lower thyroid levels, so it's possible that I'll need more of both types of thyroid this year than I will when I complete the treatment.
I saw an old friend last weekend, someone I haven't seen since before I got clean. He was in town for two days, and we spent most of the day together on Sunday. At one point we got into a heavyish discussion of free will and the power of positive thinking. He lives his life with gusto and enthusiasm, and he tends to get a bit didactic on the subject of making things happen. The motto he lives by is, essentially, go for your dreams with everything you've got and you will get what you want. I agree with the first part, but not necessarily with the second. My experience of life has been that if I pursue my dreams with everything I've got, I will get what I want if it's meant to be, and I won't if it's not. John would say that if I didn't get it, it's because I didn't really want it, but I don't agree with that, either. There have been things I wanted with all my heart that I didn't get. The best I can do in that situation is to accept that it's not going to happen and stop wasting time and energy trying to bend the world to my will.
This led to an argument about free will. I know that my opinions on the subject are not popular, nor are they particularly digestible for most people, but I can't help how I feel about it. I can't make myself believe something. I would love to believe in fairies, but I just don't. I would love to believe in heaven, but I just don't. And I would love to believe in free will, but I just don't. It has to do with my spiritual beliefs, which aren't really beliefs at all but something much less cognitive, something below the level of language. I won't go into that here, but I will say that when I read Spinoza it struck a chord. He gave voice to what I have always sensed. I am a hardcore determinist, just as he was. How I arrived there was by looking back over my own life and trying to see the stepping-off point of various paths I ended up on. I was never able to find the beginning of any of them. I would think, "Where was the initial choice I made that got me onto this wrong road? Or that right road?" And I was never able to find it. I would go back farther and farther until I reached birth and never find the beginning. The way I see it, each action in my life has led inevitably to the next and has come inevitably from the last. I see no free will there. Each "decision" I've made in my life, and each resulting action, have been determined by everything that has gone before.
I've taken that further because of my sense of what God is and what the world is, at bottom, but I suspect that my belief system has been informed, at least somewhat, by all of the reading I've done in my life. I learned to read when I was eleven months old, before I could talk, even, and I've never stopped. I survived my childhood by reading stories. I often say that books were my first drug of choice. I could lose myself in a story and forget, for awhile, the reality of my life. Not that my life was so awful or so traumatic that I needed to escape from it, but nevertheless I felt the need to go someplace else. So I read stories. I have been steeped in literature all of my life, and I'm sure it has had an effect on the way I see the world. The characters in the stories I read and reread never do or say anything other than what they did or said the first time I read the story. I can read a book for the fith time, or the twentieth, and not a word of it will be any different. My perspective may be different, but the story is the same. I suspect that because of this, I have come to see the story of my life as a book which has already been written, and I'm just playing a part decided upon ahead of time by the author.
Wherever it comes from, I'm stuck with it now. I can't see things any other way. I tried feebly to explain to John that I don't feel it lets me off the hook in any way. I still have to take responsibility for my life and my actions. Regardless of the reason why I did something, I still did it and I still need to accept responsibility for it. But it relieves me of the burden of the outcome, and it frees me of the fatal tendency of taking any one decision too seriously. It's liberating, too, in that, if I'm simply playing a part which has already been written, my only real responsibility is to play it with all my might.
None of that makes any difference, though, in my day to day life. As I said to John, ultimately all of that is just mental masturbation. I can't live my life by it because I don't know what's coming. I still have to make decisions and take action without knowing what will come of it. The only time it's helpful is when I look at the past, when I need to let go of an outcome, or when I look at the actions of other human beings. If I don't believe in free will for myself, I have to extend that to them as well, and that takes care of any impulse I may have to harbor resentment. Obviously I have a way to go in my efforts to live by the belief system I've formed. I still have trouble with difficult decisions and I still have to deal with resentment from time to time. Spinoza's prescription for a happy and contented life was self-examination. Examine your emotional responses to the events of your life, down to the roots of them, and over time you will learn to relax and allow life to happen as it will. At least, that's what I've managed to glean so far. He's a bit opaque, I have to say. It's difficult reading. Possibly I got that out of it because that's what I wanted to get out of it. It's the road I'm already on, and it's the road that suits me.
I admire John for his enthusiasm and for his ability to pick himself up each time he gets knocked down, and I'm grateful to have people like him in my life because of my Eeyore-like tendencies. I do believe in pursuing my dreams, but I've dealt with so many obstacles, disappointments and setbacks in my life that I sometimes forget about that belief and want to give up. The step work I've done in the last few years has been, in part, an attempt to rid myself of some old, self-defeating beliefs and attitudes about life, which I developed early on as armor against the disappointing difficulty of things in general. If I always expected the worst, then I wouldn't be disappointed when the worst occurred. And what I have learned is that under the veneer of cynicism was a hitherto unsuspected core of optimism. Removing that armor has been a painful process, though, and has left me feeling raw and exposed. The challenge now is to resist the urge to replace the armor when things don't go my way. So far, so good.
Next week I will find out if I still have a viral load. Despite previous disapointments, I fully expect to be negative. Despite this unpromising beginning, I fully expect to clear this disease in the fifty weeks of my treatment.
Another week has passed and not much has changed. I've noticed occasional bruising at my injection sites, and also some itching and redness, but none of it is worrisome. A friend of mine told me that she went through gallons of cortisone cream to deal with the itching on her thighs from the shots, so before I started the treatment I went out and bought a tube of the stuff, which I have yet to use. Possibly it takes awhile for that side effect to show up. When I started the treatment, I was instructed to do one shot on each side of each thigh and then one shot on each side of my abdomen, which would give me six weeks of healing before I had to use an area again. My first four shots went fine, but the first abdomen shot turned out to be the last. For one thing, I was a bit squeamish about sticking a needle into my belly. There's nothing in my thighs but muscle and fat, but my abdomen contains quite a lot of essential working parts. Even though I knew, intellectually, that the needle was nowhere near anything that could be damaged, I still didn't like it. I did the shot anyway, though, and then discovered that the injection site was bruised and swollen for a couple of days, which didn't happen on my thighs, so I decided to skip the abdomen shots. I now have a four-week rotation of shots on my thighs, and that seems to be working just fine. I'll keep an eye on the injection sites and see if cortisone cream is indicated.
On the thyroid front, things are looking up. All of my symptoms have lessened, including the deafness, which is a huge relief. I'm not "all better," but I think I might be getting there. I won't have my thyroid tested again until early August, and I hope the symptoms will have abated completely by that time. It takes six weeks to get accurate lab results after a change of dosage, so we should know where we stand by then. I don't know how long it takes to stabilize, but from the way I feel now, my guess is that my levels will still be slightly low at the six-week point. Dr W needs to bear in mind that Interferon can lower thyroid levels, so it's possible that I'll need more of both types of thyroid this year than I will when I complete the treatment.
I saw an old friend last weekend, someone I haven't seen since before I got clean. He was in town for two days, and we spent most of the day together on Sunday. At one point we got into a heavyish discussion of free will and the power of positive thinking. He lives his life with gusto and enthusiasm, and he tends to get a bit didactic on the subject of making things happen. The motto he lives by is, essentially, go for your dreams with everything you've got and you will get what you want. I agree with the first part, but not necessarily with the second. My experience of life has been that if I pursue my dreams with everything I've got, I will get what I want if it's meant to be, and I won't if it's not. John would say that if I didn't get it, it's because I didn't really want it, but I don't agree with that, either. There have been things I wanted with all my heart that I didn't get. The best I can do in that situation is to accept that it's not going to happen and stop wasting time and energy trying to bend the world to my will.
This led to an argument about free will. I know that my opinions on the subject are not popular, nor are they particularly digestible for most people, but I can't help how I feel about it. I can't make myself believe something. I would love to believe in fairies, but I just don't. I would love to believe in heaven, but I just don't. And I would love to believe in free will, but I just don't. It has to do with my spiritual beliefs, which aren't really beliefs at all but something much less cognitive, something below the level of language. I won't go into that here, but I will say that when I read Spinoza it struck a chord. He gave voice to what I have always sensed. I am a hardcore determinist, just as he was. How I arrived there was by looking back over my own life and trying to see the stepping-off point of various paths I ended up on. I was never able to find the beginning of any of them. I would think, "Where was the initial choice I made that got me onto this wrong road? Or that right road?" And I was never able to find it. I would go back farther and farther until I reached birth and never find the beginning. The way I see it, each action in my life has led inevitably to the next and has come inevitably from the last. I see no free will there. Each "decision" I've made in my life, and each resulting action, have been determined by everything that has gone before.
I've taken that further because of my sense of what God is and what the world is, at bottom, but I suspect that my belief system has been informed, at least somewhat, by all of the reading I've done in my life. I learned to read when I was eleven months old, before I could talk, even, and I've never stopped. I survived my childhood by reading stories. I often say that books were my first drug of choice. I could lose myself in a story and forget, for awhile, the reality of my life. Not that my life was so awful or so traumatic that I needed to escape from it, but nevertheless I felt the need to go someplace else. So I read stories. I have been steeped in literature all of my life, and I'm sure it has had an effect on the way I see the world. The characters in the stories I read and reread never do or say anything other than what they did or said the first time I read the story. I can read a book for the fith time, or the twentieth, and not a word of it will be any different. My perspective may be different, but the story is the same. I suspect that because of this, I have come to see the story of my life as a book which has already been written, and I'm just playing a part decided upon ahead of time by the author.
Wherever it comes from, I'm stuck with it now. I can't see things any other way. I tried feebly to explain to John that I don't feel it lets me off the hook in any way. I still have to take responsibility for my life and my actions. Regardless of the reason why I did something, I still did it and I still need to accept responsibility for it. But it relieves me of the burden of the outcome, and it frees me of the fatal tendency of taking any one decision too seriously. It's liberating, too, in that, if I'm simply playing a part which has already been written, my only real responsibility is to play it with all my might.
None of that makes any difference, though, in my day to day life. As I said to John, ultimately all of that is just mental masturbation. I can't live my life by it because I don't know what's coming. I still have to make decisions and take action without knowing what will come of it. The only time it's helpful is when I look at the past, when I need to let go of an outcome, or when I look at the actions of other human beings. If I don't believe in free will for myself, I have to extend that to them as well, and that takes care of any impulse I may have to harbor resentment. Obviously I have a way to go in my efforts to live by the belief system I've formed. I still have trouble with difficult decisions and I still have to deal with resentment from time to time. Spinoza's prescription for a happy and contented life was self-examination. Examine your emotional responses to the events of your life, down to the roots of them, and over time you will learn to relax and allow life to happen as it will. At least, that's what I've managed to glean so far. He's a bit opaque, I have to say. It's difficult reading. Possibly I got that out of it because that's what I wanted to get out of it. It's the road I'm already on, and it's the road that suits me.
I admire John for his enthusiasm and for his ability to pick himself up each time he gets knocked down, and I'm grateful to have people like him in my life because of my Eeyore-like tendencies. I do believe in pursuing my dreams, but I've dealt with so many obstacles, disappointments and setbacks in my life that I sometimes forget about that belief and want to give up. The step work I've done in the last few years has been, in part, an attempt to rid myself of some old, self-defeating beliefs and attitudes about life, which I developed early on as armor against the disappointing difficulty of things in general. If I always expected the worst, then I wouldn't be disappointed when the worst occurred. And what I have learned is that under the veneer of cynicism was a hitherto unsuspected core of optimism. Removing that armor has been a painful process, though, and has left me feeling raw and exposed. The challenge now is to resist the urge to replace the armor when things don't go my way. So far, so good.
Next week I will find out if I still have a viral load. Despite previous disapointments, I fully expect to be negative. Despite this unpromising beginning, I fully expect to clear this disease in the fifty weeks of my treatment.
Monday, June 15, 2009
The only normal people are the ones I don't know very well
I rushed home from work so I could write something, and now I'm not sure I can find it. I should have pulled over on the freeway and written it on the back of my car registration. Let me see if I can retrieve it, or something resembling it.
I was thinking about the town I live in, with its yoga studios and its health food stores and its population of aging hippies and new age types who sign up for every new "wellness" fad that comes along, from colon cleansing to anti-oxidants and pro-biotics, not to mention reiki and the Course in Miracles, and I suddenly saw, all at once, just how fucked up everyone is. For a long time, nearly all my life, I'd thought that the people I knew who didn't smoke or abuse drugs of any kind and who got regular exercise and ate right and who generally took better care of their bodies than I did of mine, I thought those people were somehow "healthier" than I was, and not just in a physical sense. I felt that drug addicts, as a breed, were inherently less equipped for life than those so-called normal people. I no longer feel that way.
I've come to see that it's hard to be alive, no matter who you are, and that there's not a person drawing breath on this planet who isn't fucked up in one way or another. When I look for it -- when I really look for it -- I can see the terror and bewilderment just below the surface of nearly every human being I run across in the course of a day. I look at the culture I live in, with its obsession with physical perfection and its intolerance of aging, and I see an entire society of human beings ill at ease with themselves and unable to face the fact of their own mortality. I see the preoccupation with yoga and vitamins and plastic surgery not as a quest for health or (as some claim) a spiritual seeking, but as a search for the Fountain of Youth. Maybe, if I just do enough yoga and eat enough vegetables and take enough supplements and focus on my breathing in just the right way, I will remain young forever and in that way I will cheat death.
We're so sanitized, as a culture, so removed from things which our ancestors took for granted. We die in hospitals and nursing homes so that our loved ones won't have the trauma of dealing with our corpses once we have vacated them. Well, what if that isn't trauma? What if the trauma is that we hide ourselves away from something we find distasteful and by doing so cheat ourselves of one of the privileges of being alive? There was a time when people lived much closer to the realities of life than we do now. There was a time, and not all that long ago, when, as a matter of course, I would have been by my mother's bed when she died, possibly the same bed where I was born, and when she was gone I would have washed her body and wrapped it in its shroud to prepare it for its ultimate placement in the earth. I would have done these intimate things with the body of the woman who gave birth to me, and by doing them I would have come face to face, unmistakably, with the fact of my own mortality. I would have seen the progression of the years and I would have seen death not as something to be avoided as long as possible, at any cost, but simply as part of the familiar cycle of birth and death. Not only that, but perhaps, having watched my mother age gracefully and succumb to death with peace and acceptance, I would have seen the span of a woman's life as a natural progression from infancy to old age, with each successive stage bringing its own joys and sorrows, and perhaps I wouldn't be so anxious to stave off the wrinkles and grey hair. Instead, what happened was that my mother died in a nursing home, 2000 miles away from where I was at the time, and by the time I flew out for her funeral, her body had been reduced to a pile of ash in a small wooden box.
I find myself feeling bemused and bewildered quite often by the world I live in, by the insanity of war and the insanity of wage slavery and the insanity of reality television and breast enhancement and whatever other distractions and irrelevancies we can come up with to make the unbearable bearable. We're here for such a short time; why do we want to spend it killing each other? Why would we want to spend it sitting in chairs under fluorescent lights, performing menial drudgery for some soulless corporation? Why would we want to spend it staring at a box across the room, watching life at one remove? It's something I've always felt: I remember, as a child, thinking, "Is this really all it is? I must be missing something. There has got to be more to it than this." My perception was that life was mainly spent in keeping ourselves occupied until we died, and that just didn't seem like enough to me. I had urges, always, to peel back the edges of the scenery to see what was behind it. I still do. And I still feel a certain impatience with people who won't say what they really think and won't talk about how they really feel, who hide behind the masks of civilization and don't mention the unmentionable because it might lead to having some kind of genuine exchange with someone else, which in turn might lead to introspection and a re-evaluation of their lives. Heaven forfend!
I don't think I'm the only one. If we've created a society in which we all have to take anti-depressants in order to survive, and we have to be taught how to breathe to deal with our anxiety, there is something terribly wrong. I sit in meetings all the time with people who express their undying gratitude for the opportunity to be in a room full of people who only want to hear the truth, where they can say whatever they need to say without fear of judgement and without fear of being misunderstood. And that's valid, but it raises the question, why is it this way? Why can't we go out in the world and say whatever we need to say without fear of judgement or fear of being misunderstood? The people we see each day are human beings, members of the same species. Chances are that we all have more common ground than we have differences. But I know from miserable experience that most people do not greet the truth with ecstatic recognition. I never developed that barrier, or whatever it is, that stops most people from placing their feet in their mouths, and so I tend to say what I'm thinking regardless of who is listening. This has not won me many friends and admirers. It's appreciated at meetings, but not in the larger world. Nevertheless, I still believe that people hear me with some part of themselves. And it's possible that, by hearing me, they are able to peel away another layer of the fear of connection which keeps us all wrapped up inside ourselves and our own tiny orbits, which stops us from saying something which might be deemed socially unacceptable, no matter how true it is.
I'm not sure I said what I wanted to say, but I doubt that more verbiage will clarify anything. Now that I've vomited it all out, I'm wondering why it was so important to get home and write it. Nevertheless, these are the things which occupy me, more often than not. I get to thinking, and before I know it, there I am again. It's one of my worst vices, thinking.
I was thinking about the town I live in, with its yoga studios and its health food stores and its population of aging hippies and new age types who sign up for every new "wellness" fad that comes along, from colon cleansing to anti-oxidants and pro-biotics, not to mention reiki and the Course in Miracles, and I suddenly saw, all at once, just how fucked up everyone is. For a long time, nearly all my life, I'd thought that the people I knew who didn't smoke or abuse drugs of any kind and who got regular exercise and ate right and who generally took better care of their bodies than I did of mine, I thought those people were somehow "healthier" than I was, and not just in a physical sense. I felt that drug addicts, as a breed, were inherently less equipped for life than those so-called normal people. I no longer feel that way.
I've come to see that it's hard to be alive, no matter who you are, and that there's not a person drawing breath on this planet who isn't fucked up in one way or another. When I look for it -- when I really look for it -- I can see the terror and bewilderment just below the surface of nearly every human being I run across in the course of a day. I look at the culture I live in, with its obsession with physical perfection and its intolerance of aging, and I see an entire society of human beings ill at ease with themselves and unable to face the fact of their own mortality. I see the preoccupation with yoga and vitamins and plastic surgery not as a quest for health or (as some claim) a spiritual seeking, but as a search for the Fountain of Youth. Maybe, if I just do enough yoga and eat enough vegetables and take enough supplements and focus on my breathing in just the right way, I will remain young forever and in that way I will cheat death.
We're so sanitized, as a culture, so removed from things which our ancestors took for granted. We die in hospitals and nursing homes so that our loved ones won't have the trauma of dealing with our corpses once we have vacated them. Well, what if that isn't trauma? What if the trauma is that we hide ourselves away from something we find distasteful and by doing so cheat ourselves of one of the privileges of being alive? There was a time when people lived much closer to the realities of life than we do now. There was a time, and not all that long ago, when, as a matter of course, I would have been by my mother's bed when she died, possibly the same bed where I was born, and when she was gone I would have washed her body and wrapped it in its shroud to prepare it for its ultimate placement in the earth. I would have done these intimate things with the body of the woman who gave birth to me, and by doing them I would have come face to face, unmistakably, with the fact of my own mortality. I would have seen the progression of the years and I would have seen death not as something to be avoided as long as possible, at any cost, but simply as part of the familiar cycle of birth and death. Not only that, but perhaps, having watched my mother age gracefully and succumb to death with peace and acceptance, I would have seen the span of a woman's life as a natural progression from infancy to old age, with each successive stage bringing its own joys and sorrows, and perhaps I wouldn't be so anxious to stave off the wrinkles and grey hair. Instead, what happened was that my mother died in a nursing home, 2000 miles away from where I was at the time, and by the time I flew out for her funeral, her body had been reduced to a pile of ash in a small wooden box.
I find myself feeling bemused and bewildered quite often by the world I live in, by the insanity of war and the insanity of wage slavery and the insanity of reality television and breast enhancement and whatever other distractions and irrelevancies we can come up with to make the unbearable bearable. We're here for such a short time; why do we want to spend it killing each other? Why would we want to spend it sitting in chairs under fluorescent lights, performing menial drudgery for some soulless corporation? Why would we want to spend it staring at a box across the room, watching life at one remove? It's something I've always felt: I remember, as a child, thinking, "Is this really all it is? I must be missing something. There has got to be more to it than this." My perception was that life was mainly spent in keeping ourselves occupied until we died, and that just didn't seem like enough to me. I had urges, always, to peel back the edges of the scenery to see what was behind it. I still do. And I still feel a certain impatience with people who won't say what they really think and won't talk about how they really feel, who hide behind the masks of civilization and don't mention the unmentionable because it might lead to having some kind of genuine exchange with someone else, which in turn might lead to introspection and a re-evaluation of their lives. Heaven forfend!
I don't think I'm the only one. If we've created a society in which we all have to take anti-depressants in order to survive, and we have to be taught how to breathe to deal with our anxiety, there is something terribly wrong. I sit in meetings all the time with people who express their undying gratitude for the opportunity to be in a room full of people who only want to hear the truth, where they can say whatever they need to say without fear of judgement and without fear of being misunderstood. And that's valid, but it raises the question, why is it this way? Why can't we go out in the world and say whatever we need to say without fear of judgement or fear of being misunderstood? The people we see each day are human beings, members of the same species. Chances are that we all have more common ground than we have differences. But I know from miserable experience that most people do not greet the truth with ecstatic recognition. I never developed that barrier, or whatever it is, that stops most people from placing their feet in their mouths, and so I tend to say what I'm thinking regardless of who is listening. This has not won me many friends and admirers. It's appreciated at meetings, but not in the larger world. Nevertheless, I still believe that people hear me with some part of themselves. And it's possible that, by hearing me, they are able to peel away another layer of the fear of connection which keeps us all wrapped up inside ourselves and our own tiny orbits, which stops us from saying something which might be deemed socially unacceptable, no matter how true it is.
I'm not sure I said what I wanted to say, but I doubt that more verbiage will clarify anything. Now that I've vomited it all out, I'm wondering why it was so important to get home and write it. Nevertheless, these are the things which occupy me, more often than not. I get to thinking, and before I know it, there I am again. It's one of my worst vices, thinking.
Friday, June 12, 2009
Some folks just don't know when the party's over
This was supposed to be the week of reckoning. It was week twelve, the week when my lab results would determine if I would continue the treatment or not. Since my viral load was only 8,000 four weeks ago, I had no doubt that the desired zero would appear this time. I was wrong. I still have a viral load. It's 124. One hundred twenty-four. Here's my vision: of an army of 500,000 there are 124 straggling soldiers left who don't yet know the war is over. Come on, guys. Give it up. Resistance is futile. It's time to surrender. Because the number is so absurdly low, we're continuing the treatment, but there will be two weeks tacked on at the end, provided my viral load is negative when I'm tested again in two weeks, because the received wisdom is that 36 weeks of treatment are needed after you hit zero in order to achieve the desired result. If, by some twist of malignant fate, I still have a viral load in two weeks, we'll tack on yet another two weeks at the end and test again in two weeks. And so forth, I presume. Judy didn't say at what point we would give up, I suppose because she assumes that the zero will appear before too long. I suppose I'll have to assume that as well. Dr H raised my Ribavirin dosage to 1000 mg a day, up from 800. I now take 400 mg in the morning and 600 mg at night.
I reached a nadir of sorts on Wednesday night. I'd gone to yet another doctor's appointment that afternoon, this time to Dr W, who doubled my dosage of Cytomel (T3), after speculating that we might be "barking up the wrong tree." This after he looked at my labs and saw that my TSH (Thyroid Stimulating Hormone, which goes up when thyroid levels go down) was high and my T3 was low. God help you if your symptoms are atypical. We discussed my incredible deafness and he seemed to think that the best thing I can do for myself is get hearing aids. I told him that my hearing gets worse when my thyroid levels are too low or too high, but that's not typical, either, apparently.
So, anyway, on Wednesday night I ripped a largish stack of CDs to my hard drive, in preparation for making a bunch of comp CDs for the party I'm having for my sponsor on the Fourth of July. It was a lot of old music I haven't listened to in years -- the Clash, X, some of the old ska bands, Elvis Costello, etc -- and as I listened I realized that probably I will never get to hear them again the way I used to. In addition to the tinnitus, which is (pardon the pun) deafening lately, I've got the muffling and the fuzz. The muffling is, I suspect, from the swelling in my neck, my face and my jaw. I'm convinced that the tissue around my Eustachian tubes is swollen, causing the muffling and making my voice echo inside my head when I talk. It's very annoying. The tinnitus will die down when my thyroid levels get back to normal, and presumably the swelling will go down and release my poor tubes, but I'm afraid I may be stuck with the fuzz. Everything sounds fuzzy ever since I went to see Gogol Bordello with a friend, about three weeks ago. The show was great, but it was far too loud, and I forgot my earplugs. We stood too near the amps, too, so really it's my own damned fault. I was almost completely deaf after the show, and although by the next morning I'd regained some small bit of hearing, people still sounded like they were sucking helium and every noise sounded fuzzy, as though I'd blown out my speakers. It has slowly improved since then, but I have a feeling that it won't go away entirely. So, by way of shutting the stable door after the steed is stolen, I have resolved never again to go to a concert without earplugs.
On Wednesday night I listened to White Man in Hammersmith Palais, which, like every other piece of music I've heard in the last three weeks, sounded odd . It wasn't complete. There was nuance missing. That might be partly because my computer's speakers suck, but partly it's the fuzz. There are sounds my ears no longer hear. When it struck me that I may have permanently damaged my own hearing, which wasn't too great to begin with, by my own stupidity, I started to cry. I moped around for an hour or so, whining to God that it's not fair that Mick Jagger can still hear and I'm deaf as an adder. It's not fair, I tell you! Eventually I grew tired of myself and focused on something else, but the cloud of gloom still hasn't quite dissipated. I don't want to be deaf. I go to meetings and can't hear people three seats down from me. How can I participate in meetings if I can't hear? And hearing aids cost a fortune. I can't afford them. The thing that makes me want to cry, though, every time I think about it, is music. What am I going to do if I can't listen to music?
I live in hope that the Cytomel will help. My hearing was just fine in early March, before all of this thyroid business started. I had the tinnitus, of course, but it wasn't bothersome most of the time, and I had no muffling and no fuzz. I could hear people across the room as long as they enunciated. And I could hear music. So I'm praying that once my thyroid levels are normal again I will regain some of what I've lost, and I'm hoping against hope that whatever it was I damaged at the concert will heal itself. The fuzz isn't as bad now as it was last week, and last week was better than the week before, so there's always hope.
In fact, I have so much hope that I bought two tickets to see Conor Oberst and the Mystic Valley Band at Echoplex on August 27th. I'm on the email list, and when I saw who was playing I got really excited and decided that I had to go, deaf or not. Tickets went on sale last Saturday at 10:00 am, and I was determined to get two. I knew they would sell out almost instantly (I learned my lesson when the Buzzcocks played at Sunset Junction and the tickets sold out in ten minutes), so I set an alarm on my phone for 9:55 and prepared to sit at the computer, at 9:59, with my cursor hovering over the link, so I could click right when the hour turned over. I did so and snagged my two tickets. Now I just have to find someone to go with me.
And I won't forget my earplugs.
I reached a nadir of sorts on Wednesday night. I'd gone to yet another doctor's appointment that afternoon, this time to Dr W, who doubled my dosage of Cytomel (T3), after speculating that we might be "barking up the wrong tree." This after he looked at my labs and saw that my TSH (Thyroid Stimulating Hormone, which goes up when thyroid levels go down) was high and my T3 was low. God help you if your symptoms are atypical. We discussed my incredible deafness and he seemed to think that the best thing I can do for myself is get hearing aids. I told him that my hearing gets worse when my thyroid levels are too low or too high, but that's not typical, either, apparently.
So, anyway, on Wednesday night I ripped a largish stack of CDs to my hard drive, in preparation for making a bunch of comp CDs for the party I'm having for my sponsor on the Fourth of July. It was a lot of old music I haven't listened to in years -- the Clash, X, some of the old ska bands, Elvis Costello, etc -- and as I listened I realized that probably I will never get to hear them again the way I used to. In addition to the tinnitus, which is (pardon the pun) deafening lately, I've got the muffling and the fuzz. The muffling is, I suspect, from the swelling in my neck, my face and my jaw. I'm convinced that the tissue around my Eustachian tubes is swollen, causing the muffling and making my voice echo inside my head when I talk. It's very annoying. The tinnitus will die down when my thyroid levels get back to normal, and presumably the swelling will go down and release my poor tubes, but I'm afraid I may be stuck with the fuzz. Everything sounds fuzzy ever since I went to see Gogol Bordello with a friend, about three weeks ago. The show was great, but it was far too loud, and I forgot my earplugs. We stood too near the amps, too, so really it's my own damned fault. I was almost completely deaf after the show, and although by the next morning I'd regained some small bit of hearing, people still sounded like they were sucking helium and every noise sounded fuzzy, as though I'd blown out my speakers. It has slowly improved since then, but I have a feeling that it won't go away entirely. So, by way of shutting the stable door after the steed is stolen, I have resolved never again to go to a concert without earplugs.
On Wednesday night I listened to White Man in Hammersmith Palais, which, like every other piece of music I've heard in the last three weeks, sounded odd . It wasn't complete. There was nuance missing. That might be partly because my computer's speakers suck, but partly it's the fuzz. There are sounds my ears no longer hear. When it struck me that I may have permanently damaged my own hearing, which wasn't too great to begin with, by my own stupidity, I started to cry. I moped around for an hour or so, whining to God that it's not fair that Mick Jagger can still hear and I'm deaf as an adder. It's not fair, I tell you! Eventually I grew tired of myself and focused on something else, but the cloud of gloom still hasn't quite dissipated. I don't want to be deaf. I go to meetings and can't hear people three seats down from me. How can I participate in meetings if I can't hear? And hearing aids cost a fortune. I can't afford them. The thing that makes me want to cry, though, every time I think about it, is music. What am I going to do if I can't listen to music?
I live in hope that the Cytomel will help. My hearing was just fine in early March, before all of this thyroid business started. I had the tinnitus, of course, but it wasn't bothersome most of the time, and I had no muffling and no fuzz. I could hear people across the room as long as they enunciated. And I could hear music. So I'm praying that once my thyroid levels are normal again I will regain some of what I've lost, and I'm hoping against hope that whatever it was I damaged at the concert will heal itself. The fuzz isn't as bad now as it was last week, and last week was better than the week before, so there's always hope.
In fact, I have so much hope that I bought two tickets to see Conor Oberst and the Mystic Valley Band at Echoplex on August 27th. I'm on the email list, and when I saw who was playing I got really excited and decided that I had to go, deaf or not. Tickets went on sale last Saturday at 10:00 am, and I was determined to get two. I knew they would sell out almost instantly (I learned my lesson when the Buzzcocks played at Sunset Junction and the tickets sold out in ten minutes), so I set an alarm on my phone for 9:55 and prepared to sit at the computer, at 9:59, with my cursor hovering over the link, so I could click right when the hour turned over. I did so and snagged my two tickets. Now I just have to find someone to go with me.
And I won't forget my earplugs.
Saturday, June 6, 2009
Beware of this and that
Where do the weeks go? This week went faster than last week, I think, because I wasn't as tired. I'm still tired, but it's not as bad as it was. I mentioned my fatigue when I talked to Judy yesterday and she suggested that my hemoglobin might be low. We'll find out when we get the results of next Monday's labs. If it's my hemoglobin, I can take an iron supplement and that should help. I don't eat red meat, and I don't think I'd be willing to eat a slab of cow flesh just to get some iron in my body. I eat lots of dark green leafy vegetables, but maybe that's not enough. We'll see.
There's not much to report on the Interferon front. I'm beginning to feel that the title of this blog is misleading. My week was fairly interesting, if not packed with incident, but nothing that happened had anything to do with Interferon or Hepatitis C. I seem to have developed a labial cyst, which will probably need to be lanced, but that's not a terribly interesting topic. I'm wondering, though, just how many medical conditions I can pack into one month. I may have more to say on it next week, after I've endured the pain of having the thing lanced, but for now it's in the future and may not happen at all so I'm not inclined to think about it much.
What's been occupying me for the last week is my latest fourth step. The fourth step of Narcotics Anonymous is, "We made a searching and fearless moral inventory of ourselves," and that's what I've been doing, once again. I use the Narcotics Anonymous Step Working Guides for my step work, but usually I prefer to work step four from the information pamphlet called Working Step Four in Narcotics Anonymous. I don't like the way step four is laid out in the Guide. I'm using the Guide this time, however, because my sponsor insisted. I don't know why she thinks it's better than the IP, but I'm willing to take direction from her. The first section of the Guide is on resentments. I wrote about my resentments and then answered the questions related to them. One question was something like, "Do I see any patterns in my resentments?" I cast my mind over the resentments I'd listed and came up with the interesting conclusion that what pisses me off the most in life is feeling unconsidered. I hate to be treated like I'm invisible. The way I feel about it, if you're going to hurt me, I want you to look at me while you're doing it. I don't like feeling that I'm simply collateral damage in somebody else's war.
Nearly every resentment I've ever had in my life can be filed under this category. When I'm driving, nothing infuriates me more than to be cut off by someone who was simply oblivious to my existence. I even get angry when I see that happen to other drivers. If someone cuts me off deliberately, I don't get nearly as angry. At least they saw me. I wasn't invisible. That's a petty example, but it illustrates what I'm talking about, and the pattern I see emerging is that I continually find myself in relationships with people to whom I don't matter, people who, on a fundamental level, are unaware of my existence as a separate and real human being. What I'm exploring in this fourth step is the origin of that, way back in early life. I won't go into too much detail, but what this is about is having been emotionally abandoned and rejected by my parents, although it's not so much about what they did as how I responded to what they did, and how I continue to respond to it in relationship after relationship, with friends, lovers, teachers, even pets.
It's a commonplace in recovering circles that if a person is drawn to emotionally unavailable people, it's because that person is emotionally unavailable, but those are just words. What I'm exploring is the roots of my own emotional unavailability. It's territory I've explored over and over as I've worked the steps, but it gets deeper each time. My addiction is the part of me that wants to stay sick and separate, that wants to isolate me from the warmth of human companionship and from a connection with a higher power. So the way my addiction responded to that early rejection and abandonment was to tell me that I wasn't important enough to care about, that I didn't matter to other people, and I went through a good deal of my life believing that. It wasn't conscious, but now that I'm looking for it I see it all over the place. I was labeled a rebellious and defiant teenager, but I didn't feel defiant. I simply didn't recognize that my behavior had an impact on other people. I didn't feel important enough to have an impact, so it never occurred to me that my mother might worry about me when I stayed away for weeks at a time, not even when she told me she did. I just did whatever I felt like doing and assumed that no one was paying attention. Slowly, over a long period of years, that conviction lost much of its power, but it's still been operating under the surface, particularly in romantic relationships.
What's coming up now is the pain of that early abandonment and the anger it aroused. I never felt pain over it. I even felt a bit defective because of my lack of emotional response to something which would universally be recognized as painful. But I learned in infancy how to deflect and bury my emotions, so I never became consciously aware of the pain. Until now. The way I see it, we're born knowing what we're worth, but that knowledge gets buried under the avalanche of human experience. For some people it's deeply buried and for others there's just a thin layer over the top, but by the age of five everyone has had experience, to some degree or other, with rejection, ridicule, derision, injustice and any number of similar things which erode the self-worth we arrive in the world with. It's still there, though, under the surface, and I'm now seeing just how angry I got with my parents for having treated me as though I didn't matter.
They didn't. Of course they didn't. At least, they didn't mean to. There were extenuating circumstances. They were dealing with the death of my four-year-old sister, who was hit by a car two months before I was born, so naturally they didn't have much to give to the newborn infant who'd just arrived on the scene. It wasn't anybody's fault. It's just the way it was. Nevertheless, the damage was done, and it pissed me off to feel unconsidered. It wasn't personal, of course, but the question that comes to my mind is, Why the hell not? It was personal to me. And so I've gone through life getting pissed off every time I feel that someone has treated me as though I were invisible.
I see the contradiction. I seek out people who are unable, for one reason or another, to see me, and then I get angry with them for treating me as though I were invisible. That's the story and the box it came in. I'm sure that there are many schools of thought on this sort of subject, but my particular bias tells me that it's my addiction at work, trying to keep me sick and separate, trying to reinforce that original response. And the answer to it is to allow this wound to be healed by my higher power. Steps six and seven should be interesting this time around. Recovery is never dull. The endlessly fascinating spectacle of my own inner workings can keep me occupied, amused and entertained for the rest of my life.
There's not much to report on the Interferon front. I'm beginning to feel that the title of this blog is misleading. My week was fairly interesting, if not packed with incident, but nothing that happened had anything to do with Interferon or Hepatitis C. I seem to have developed a labial cyst, which will probably need to be lanced, but that's not a terribly interesting topic. I'm wondering, though, just how many medical conditions I can pack into one month. I may have more to say on it next week, after I've endured the pain of having the thing lanced, but for now it's in the future and may not happen at all so I'm not inclined to think about it much.
What's been occupying me for the last week is my latest fourth step. The fourth step of Narcotics Anonymous is, "We made a searching and fearless moral inventory of ourselves," and that's what I've been doing, once again. I use the Narcotics Anonymous Step Working Guides for my step work, but usually I prefer to work step four from the information pamphlet called Working Step Four in Narcotics Anonymous. I don't like the way step four is laid out in the Guide. I'm using the Guide this time, however, because my sponsor insisted. I don't know why she thinks it's better than the IP, but I'm willing to take direction from her. The first section of the Guide is on resentments. I wrote about my resentments and then answered the questions related to them. One question was something like, "Do I see any patterns in my resentments?" I cast my mind over the resentments I'd listed and came up with the interesting conclusion that what pisses me off the most in life is feeling unconsidered. I hate to be treated like I'm invisible. The way I feel about it, if you're going to hurt me, I want you to look at me while you're doing it. I don't like feeling that I'm simply collateral damage in somebody else's war.
Nearly every resentment I've ever had in my life can be filed under this category. When I'm driving, nothing infuriates me more than to be cut off by someone who was simply oblivious to my existence. I even get angry when I see that happen to other drivers. If someone cuts me off deliberately, I don't get nearly as angry. At least they saw me. I wasn't invisible. That's a petty example, but it illustrates what I'm talking about, and the pattern I see emerging is that I continually find myself in relationships with people to whom I don't matter, people who, on a fundamental level, are unaware of my existence as a separate and real human being. What I'm exploring in this fourth step is the origin of that, way back in early life. I won't go into too much detail, but what this is about is having been emotionally abandoned and rejected by my parents, although it's not so much about what they did as how I responded to what they did, and how I continue to respond to it in relationship after relationship, with friends, lovers, teachers, even pets.
It's a commonplace in recovering circles that if a person is drawn to emotionally unavailable people, it's because that person is emotionally unavailable, but those are just words. What I'm exploring is the roots of my own emotional unavailability. It's territory I've explored over and over as I've worked the steps, but it gets deeper each time. My addiction is the part of me that wants to stay sick and separate, that wants to isolate me from the warmth of human companionship and from a connection with a higher power. So the way my addiction responded to that early rejection and abandonment was to tell me that I wasn't important enough to care about, that I didn't matter to other people, and I went through a good deal of my life believing that. It wasn't conscious, but now that I'm looking for it I see it all over the place. I was labeled a rebellious and defiant teenager, but I didn't feel defiant. I simply didn't recognize that my behavior had an impact on other people. I didn't feel important enough to have an impact, so it never occurred to me that my mother might worry about me when I stayed away for weeks at a time, not even when she told me she did. I just did whatever I felt like doing and assumed that no one was paying attention. Slowly, over a long period of years, that conviction lost much of its power, but it's still been operating under the surface, particularly in romantic relationships.
What's coming up now is the pain of that early abandonment and the anger it aroused. I never felt pain over it. I even felt a bit defective because of my lack of emotional response to something which would universally be recognized as painful. But I learned in infancy how to deflect and bury my emotions, so I never became consciously aware of the pain. Until now. The way I see it, we're born knowing what we're worth, but that knowledge gets buried under the avalanche of human experience. For some people it's deeply buried and for others there's just a thin layer over the top, but by the age of five everyone has had experience, to some degree or other, with rejection, ridicule, derision, injustice and any number of similar things which erode the self-worth we arrive in the world with. It's still there, though, under the surface, and I'm now seeing just how angry I got with my parents for having treated me as though I didn't matter.
They didn't. Of course they didn't. At least, they didn't mean to. There were extenuating circumstances. They were dealing with the death of my four-year-old sister, who was hit by a car two months before I was born, so naturally they didn't have much to give to the newborn infant who'd just arrived on the scene. It wasn't anybody's fault. It's just the way it was. Nevertheless, the damage was done, and it pissed me off to feel unconsidered. It wasn't personal, of course, but the question that comes to my mind is, Why the hell not? It was personal to me. And so I've gone through life getting pissed off every time I feel that someone has treated me as though I were invisible.
I see the contradiction. I seek out people who are unable, for one reason or another, to see me, and then I get angry with them for treating me as though I were invisible. That's the story and the box it came in. I'm sure that there are many schools of thought on this sort of subject, but my particular bias tells me that it's my addiction at work, trying to keep me sick and separate, trying to reinforce that original response. And the answer to it is to allow this wound to be healed by my higher power. Steps six and seven should be interesting this time around. Recovery is never dull. The endlessly fascinating spectacle of my own inner workings can keep me occupied, amused and entertained for the rest of my life.
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