A Year and a Month in the Life

I love musical theater, I'm sure to the shock of most of you that know me (and if you don't, read what I just wrote with a big healthy dose of sarcasm), but I really love musical theater. RENT is my favorite musical. It's not because it's either the best written, or the best scored, or the biggest and best "message" musical, but it is my favorite primarily because it does have a very clear, and to me a very compelling message. It's really all about being and living in the now, from the opening overture all the way through to the final refrain.

For those of you who haven't seen the play, the movie, or heard the soundtrack, the easiest quick and dirty synopsis is thus: it is a modern day retelling of the opera La Boheme. La Boheme, I would have to say, is really one of the definitive, seminal and most famous of Puccini's operas. If it is not the most famous, it comes in very closely behind Madama Butterfly. The libretto for La B. is based on "Scènes de la vie de bohème" by Henri Murger. This makes RENT, I suppose, a derivative of a derivative of a rather good piece of writing, something you would expect to be just up my alley for that reason alone. There is a somewhat tragic real life story that is tied to RENT: the playwright, Jonathan Larson, died suddenly and unexpectedly on January 24, 1996, the day before the off-Broadway premiere of his life's work. He did have HIV disease, but had been doing well and his death was unexpected, tragic and a bit ironic.

The original story was based on Murger's own experiences as a desperately poor writer living in a Parisian attic during Paris' golden age of Salon. He was a member of a informal club of friends who called themselves "the water drinkers", because they were too poor to afford wine (by the way, the way that they play this out in RENT is pretty brilliant). In Murger's writing he combines both pathos and humor. It's more than a bit self-indulgent, and in the end it is little more than a tragic story, with a tragic (and a bit melodramatic) ending. This ending changes little, either in the play or the movie, except that RENT leaves one with a feeling of genuine hope and possibility, in spite of the minefield of bodies and souls that were left in the wake of the early days of HIV. In my opinion, this story was a way for Murger to glamorize his life: the life of the starving artist, and even perhaps more than glamorizing it, making that a somehow more noble life because of the suffering. This has always been a bone of contention for me. I think that there is a difference between appreciating and respecting somebody's ability to create in spite of great adversity and saying that because of that, they are better or their work is somehow better and/or more noble.

I consider myself to be artistic by nature, but I also consider my self to be equally a pragmatist. I really don't find any glory in suffering. Because I grew up poor and had to make my own way doesn't make me any better than somebody that was born with a silver spoon in their mouth. I've lived in the shadow of the reaper for over half my life now, but I see no glory or glamor in living with chronic and potentially lethal illness. It doesn't make me any better than any other person on this planet whether they have lived with illness or robust health. One really has nothing to do with the other in both of these examples. So because of this, though I've always had a conflicted fascination with the story of the artist who suffers for his art, I've never fully bought into that premise. When I'm in San Francisco, sitting in a coffee house in one of the hip "new" neighborhoods, and I listen to these younger kids sit around and bitch and moan about the difficult life of the young artist and the glory in hardship and suffering, I'm left to chuckle a little. My first thought always is: you're 22, you're living in a 4 room (not 4 bedroom, 4 room) flat with 3 roommates, struggling to make enough to pay for that $5.00 latte, and to you, that is suffering. Well, wake up and welcome to starting out your adult life in a big expensive city. I moved here with a college education in 1984 and a nursing job lined up before I got here, and I still spent the first couple of years here living with 3 other people in a 5 room flat (every room that wasn't the kitchen was a bedroom), and just scratched by for a good amount of time. It was no easier to move to a big city for the first time in 1984 than it is now, though I can't tell you how many times I hear "you had it so much easier, now it's impossible". How do you know it was easier? In 1984, if you were even born yet, you were still in diapers. Don't trust what you're told and just take things to be facts just because that is what you want them to be. Consider yourself to be lucky to be able to live in a big cosmopolitan, cultural and interesting city, instead of being stuck living out a less than fulfilling existence in Des Moines, Toledo, Oklahoma City, Boise, Milwaukee, or any number of other less interesting urban settings. You're living in one of the cultural epicenters of the universe, and you're young, healthy and hopefully aware enough to realize how fortunate you are, instead of seeing what you are lacking.

Again, I've digressed from a discourse on the life of the suffering artist, and gotten comfortably into my "old coot" mode: "you whipper-snappers have no idea how good you have it". That is no less a bullshit belief than the one I'm bemoaning. But this is not my point. I really wanted to talk about Rent, because if you've read me or otherwise know me well enough, you know how much disdain I have for using cultural references, especially popular music, as an easy, cop out writing device. I hate it so much, that I do it all the time. Both statements are true.

What I love about RENT, even though it really is still the story of the starving artist (not in 19th century Paris though; this time it's in New York City in mid to late 1980's), it still isn't a tragedy. AIDS is sweeping through New York, squatters are getting evicted from "lofts" and condemned apartments in SOHO, Chelsea, Tribeca and Lower East Side . To be more accurate, these homes were for the most part decrepit shit-houses, filled with vermin and often lacking basics like water and electrial service. Most of them were also serious fire traps waiting to happen, and this was only amplified by the squatters often burning wood in drums indoors to get heat. They were, however, the last bastions of affordable living in Manhattan, waiting to be gentrified. That movement was being led in no small measure by the likes of Donald Trump, who isn't mentioned in the play, but his style of gentrification and redrawing the urban landscape looms large in the story of the time, and I would have to think that he is at least represented suggestively in the storyline of the play. There are plenty of story lines going on that could take the play completely over the top of the pathos Richter scale: AIDS, eviction and displacement, drug addiction, loss of venues for more alternative art, etc.. This doesn't really happen though. For me, and most people that I have talked about the play with, it's really more a celebration of rising above all the hardship, and making the most out of your life. The first and most important step is to live life in the moment.

Nearly every musical number in RENT, except for a couple (like "The Tango Irene"), are about finding a way to make every day count, how to find hope and inner resolve in times that seem hopeless, finding kindred spirits in an uncaring world, and to always remember, as is the line of my favorite number in the play: "NO DAY BUT TODAY":

The heart may freeze or it can burn
The pain will ease if I can learn

There is no future
There is no past
Thank God this moment's not the last

There's only us
There's only this
Forget regret-- or life is yours to miss.
No other road
No other way
No day but today

There's only yes
Only tonight
We must let go
To know what is alright
No other course
No other way
No day but today

I can't control
My destiny
I trust my soul
My only hope
is just to be

There's only now
There's only here
Give in to love
Or live in fear
No other path
No other way
No day but today

I was only going to quote a couple of lines from that number, but as I read the lyrics, I had the same response that I have every time I hear them sung: with my eyes welled up with tears. Those lyrics (and really, the lyrics of most of the songs in the play) really won't hold their impact when condensed. The sentiments that this song expresses have always been my way that I've tried to look at life, and not just since the time that I started living with life-threatening illness. That certainly reaffirmed my belief in the power of now. This is definitely the life that I have always aspired to, with varying degrees of success in actualizing it.

I'm reminded of the cold winter day in early March of 1987 when I found out I had HIV. I got in my car, drove down to Sutro Gardens and Ocean Beach and started to walk around in a trance, feeling that life was over at that moment. The tears started out in self-pity, but within the span of a couple of hours, the tears started to represent a different attitude. I remember telling myself "this is a crossroads in my life, the biggest so far. I can either give up now and wait for death, or I can resolve to make every day count and remember to be grateful for whatever time I'm left with here. No more watching the clock; this is either the beginning of the end or a new beginning." There has been only one other moment of that kind of magnitude in my life since, and that was when Ken died. I think that the kind of resolve that I had spent the prior 20 years building is what has helped me the most to navigate that time after Ken's death, and it still continues.

Will I lose my dignity
Will someone care
Will I waste my lifetime
In this nightmare

Those are the only four lines of "Will I", which is sung as a round. Those words were written sometime between 1991 and 1994, and they struck so close to home when I first heard them. They speak so well to the feeling of being a leper of sorts. Even now it seems that feeling is still somewhat prevalent. I know that I and other HIV+ people that I've had this conversation with describe a feeling that surfaces periodically; one where you feel damaged, diseased, dirty, not worthy. If you think that has gone away then I have a rude awakening for you. It might be expressed with more subtlety than early on in the AIDS crisis, but I still perceive myself that way from time to time, and also feel that others perceive me in the same way.

Though those 2 songs are the ones whose lyrics pop into my head most often, "Seasons of Love" has been in my head in the last couple of weeks. I just spent my most recent doctor's appointment (last Wednesday) planning out the course of the Interferon therapy. Early signs look good, but for someone like me, with another chronic and dangerous virus, it's not so cut and dry. Standard of therapy is still 48 weeks of Interferon and Ribavirin, but we spent this last appointment deciding whether or not it might be more prudent to consider the 48 weeks to start at Week 8, which was when my viral load plummeted, so that would really be 56 weeks. To most, perhaps not a big deal, but it really kind of is. Consider that now, instead of the 11 months I was expecting and planning for (which was going to closely coincide with my 50th birthday). I'm now looking at 13 months, maybe more. Just because my viral load was most recently undetectable, there is less than remote chance that it may pop up again at some time, and often times, that is when therapy is stopped. It's all fine and dandy until you stop taking the drugs, and then pow, up it shoots.

It's not like this is a walk in the park either. Imagine what it is like going to bed every Sunday night after injecting yourself with Interferon, knowing that the next day you're going to feel like death warmed over, and you don't know how long it will last. Maybe a day, maybe until the next Sunday when you dose again and start over. And then there is laundry list of side effects, none of which are predictable, other than knowing that they are likely to pop up again. There is the usual migraine on Monday, that untreated will last for days. There are fevers and night sweats that hit for no apparent reason, but with an unpleasant regularity. There are the mood swings, which can be all over the board. I've been lucky to have thus far been spared of the overwhelming depression that most people eventually get, but I am having one very common psychiatric side effect, one that I hear is almost universal, and that is a bad temper.

It's no surprise to anybody that knows me that I can be moody, brooding and sometimes just downright unpleasant. Since starting Interferon, that has morphed into a downright nasty temper. I've bitten people's heads off more than once for no apparent reason. My fuse is short, and nobody around me is spared when I am in that mood. That is most certainly one of the main reasons I've sequestered myself at home for the most part lately. Honestly, it's embarrassing, and if I stay away from things that trigger it, like being in crowds, social situations, answering the phone, just having people around me period, it's less stressful. I'm sure I've pushed people away, but sometimes, it's for their own good. I don't like attacking a loved one for no good reason, so anything I can do to avoid it, I'm going to try. I don't mind being alone; for that matter, I prefer it at this point, so unless it becomes a social phobia, I'm going to just ride with it.

I also don't want to medicate it away. I talked to the shrink this last week about that. Since I lost Ken, I've been on antidepressants and mood stabilizers for the first time in my life. I know it's foolhardy to just stop everything, but at the same time, I don't want to whittle my emotional range down to almost non-existent. Life sucks sometimes, and depression is a normal response. I've been able to deal with mine for most of my life without medicating it away. Who is to know that in the end, I'm not doing myself a disservice. As a result this is my strategy: 1) get off the mood stabilizer, 2) smoke weed only for nausea, appetite stimulation and neuropathy pain, 3) no alcohol, 4) no narcotic pain meds, and finally 5) no caffeine. So far so good. I have a pretty good self-barometer. I will know if I hit a point where I'm over my head, and me and the shrink will cross that bridge if and when necessary.

But this is again a reminder, a nudge, a tap on the shoulder, a revelation: I'm living with HIV and Hepatitis C and all the other shit thrown in, I'm not dying from them. So it's a year and a month; in a way it sucks, but that is outweighed by it's benefit, at least so far. And back to Rent, and "Seasons of Love":

Five hundred twenty-five thousand
Six hundred minutes,
Five hundred twenty-five thousand
Moments so dear.
Five hundred twenty-five thousand
Six hundred minutes
How do you measure, measure a year?

In Daylights, in sunsets, in midnights
In cups of coffee
In inches, in miles, in laughter, in strife.

In five hundred twenty-five thousand
Six hundred minutes
How do you measure
A year in the life?

How about love?
Measure in love
Seasons of love.

Five hundred twenty-five thousand
Six hundred minutes!
Five hundred twenty-five thousand
Journeys to plan.

Five hundred twenty-five thousand
Six hundred minutes
How do you measure the life
Of a woman or a man?

In truths that she learned,
Or in times that he cried,
In bridges he burned,
Or the way that she died.

It's time now to sing out,
Tho' the story never ends
Let's celebrate
Remember a year in the life of friends
Remember the love!

My spiritual path teaches that although this "life" is illusory, I am here for a reason, and that reason is to use every minute of every day here as a classroom, until I wake from the dream and return to Oneness with God. This is how we will eventually transcend this existence and return home. To do this successfully, one must live in the moment and observe one's self continually. Not with judgment, but as a dispassionate observer. One must let go of judgment (self or of others) and practice continual and radical forgiveness.

Each day, I find a new tool to allow me to live a little more in the moment each day. When my time here ends is of no consequence, and so dwelling or obsessing on it doesn't serve me well. A life spent constantly looking around the next corner, or even looking back at where I have been does nothing more than divert my attention away from looking at what matters. I have 44 weeks to go with this therapy, at least maybe. But what I have to ask myself now if living with this obsessive attention to some arbitrary countdown is nothing more than diversionary and mental masturbation, and possibly harmful.

There's only us
There's only this
Forget regret-- or life is yours to miss.
No other road
No other way
No day but today

I've spent many years now trying to live a life focused on not regretting the past or fearing the future, or a lack of one. Living in the moment, for today, looking at what is there and not what I want to be there, or regretting what I feel I'm lacking sounds so simple. Taken at face value it really is. The problem is, for something that is really so simple, we tend to spend a whole lot of time doing everything we can to sabotage ourselves when we try to live in the present. I no longer fear death, as the death of this body may mean returning home. That, or I'll reincarnate to continue learning. I used to say that I didn't fear death, and it was BS; I was terrified of death. I have lived most of my life trying to outrun it. Moving past fear and being at peace with my choices in this life has now made me not fear death at all, at least on a subconscious level. As I've said in the past, I'm not courting it, but that is altogether different from making peace with it. I feel so much more inner peace, and it just gets better every day.

I'm almost a little nervous to publish this, it seems so personal; more so than any other story I've published so far. There is a voice that tells me that there is at least one other person that needs to see it. In that case, I'll sacrifice a little more of my privacy.

How do you measure a year and a month in the life of a man? In number of injections and pills? In regrets and missed opportunities? In weeks, or days or hours or minutes? Maybe the answer is that there is no way to measure the intangible, and even more importantly, I'm not convinced that it really matters. If I have to do it, then I will measure it in love.




Doggydad's Life Now: The Viral Monologues by Parry Tallmadge is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
Based on a work at doggydad.blogspot.com.
Permissions beyond the scope of this license may be available at http://www.runnymedesilkys.com.


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Pity, Party of One

I'm going to have a little whine with my cheese tonight. I'm warning you, only because if you know me well, you know that I'm not a huge complainer, especially about physical pain. I have a very high threshold, especially for a man. So that sounded a bit sexist, but I'm going to expound: the vast majority of the time, it's been my experience that women have a much higher pain tolerance. Let's say it's at least a statistically significant difference, in my experience, and this isn't just coming out of left field. I was a practicing Registered Nurse until 1995, and before that, I had spent most of my adult life working in health care, doing direct patient care jobs (i.e., nursing assistant). I've taken care of a lot of patients (and friends) in unbelievable pain, and I'll say it again: in general I've found that women tend to have a higher tolerance for pain than men. Of course there are exceptions but...anyway, you get where I'm going, right?

Before I go any further, let me give one more piece of setup information: I'm klutzy and very accident prone. Nothing life threatening, but there have definitely been some real doozies where I've messed myself up pretty good. I've often joked with close friends about my pain tolerance. It invariably ends up with some story like "remember when you gashed your head open on the cupboard door corner and stood there laughing your butt off as your forehead was gushing blood?" Laughing at pain is recurring theme if you know me. When I stub a toe so hard I break it, bang my head into a sharp corner, or slip and fall and crack my tailbone, you'll likely find me in a fit of giggles.

It's always been that way. I still remember being 10 (it was 1970), my Mom had just married her 2nd (and last) husband and we were getting into his brand new Cadillac Sedan de Ville (and he got a new one every year) I was getting into the back seat and had my hand still partly in the doorway as my Mom slammed it shut onto 3 of my fingertips. I don't know if you ever closed a door on a 1970 Cadillac, but it's like a tank. There I was, sitting in the backseat, tears running down my face and laughing and crying at the same time. I lost 2 of the 3 fingernails. If you've ever done that you know the kind of pain I'm talking about. This characteristic started young with me, and it's never changed. I'll do something gruesome looking and horribly painful and start giggling. Then I'll see the horrified look on the face of a friend or other onlooker and that will turn it into full on yuk-yuks.

Another of my interesting quirks in regard to this general subject is my occasional chuckle when somebody injures themselves. Yes I do have a bit of schadenfreude in my personality. I justify it by saying that I see no more humor when somebody injures themselves than I experience when I am both the perpetrator and the victim. Unfortunately, that doesn't make it any less shocking to some innocent bystander. Let me also offer one other (possibly lame) qualifier: I don't do this when it is somebody who is disabled, elderly, or otherwise physically impaired. I do have a conscience, after all. I also can reign this in if this is a really serious situation.

I'm talking more about the guy walking down the street, texting, and oblivious to his surroundings who walks straight into a light pole. Or someone stinking drunk at a beach party who decides to get up and go to the beach house for a bit, then, as she gets up and starts her trip, she walks straight into a palm tree. And then apologizes to the tree. If the last one sounds a bit too specific, it's because I actually witnessed this happen years ago when vacationing in the British Virgin Islands. I thought I was going to pee myself. Or somebody getting into a hammock for the first time, and ending up face down in the lawn underneath the hammock.

I've made my point. In truth, I've probably overstated my point, but if you've been following my adventure in journaling, you'll find a few recurring themes: verbosity, too much information, wild tangents, an occasion lapse into hyperbole and redundancy. And redundancy. But back to the happy subject of pain. As much as I've tried to drill in the point that I'm not a sissy with pain, I have to admit it: I'm hurting now, and it's something so stupid, but so painful that I can't think of much of anything else.

I'm sitting here now with a tongue that is covered in aphthous ulcers, aka canker sores. They nearly completely ring the edge of my tongue, plus they cover the lion's share of the upper surface on my tongue. I'm sure pretty much everyone that is reading this has had an aphthous ulcer at some point in their life. Knowing how painful one is, imagine having them basically coating your tongue.

Eating is torturous. I love food, and more specifically, I love hot, spicy, tangy, sour food. I like intense flavors, but eating those right now is absolute insanity. I was trying to have a bit of ice cream this evening, and I swear to god, it felt like I was trying to eat a jellyfish. I am miserable, bitchy, grouchy and just generally unpleasant to be around. Thank God I live alone, I would feel sorry for anybody who had to deal with me for an extended period of time right now. I actually have an out of town visitor right now; Laurie, a very good friend from college, and all I can say is "thank God it's Laurie". She gets me and she intuitively knows the best way to deal with me when I'm in pain: leave me the hell alone. I don't want to be doted on, I don't want to be felt sorry for, I just want to be left alone. If I need something, I'll let you know, but other than that, just steer a clear path around me, lest you get your head unmercifully and undeservedly bitten off. I usually won't cry or whine when I'm in this place, but I'll be miserable company to be sure.

Not so this time, kemosabe. I am whiny, pitiful and just generally unpleasant to be around. I am complaining about the pain constantly, and every time that I irritate one or more of the sores, which takes nearly nothing to do, I moan and nearly cry. Irritating it pretty much takes almost nothing. Running my tongue along my teeth is like licking barbed wire. Brushing my teeth feels like I have Draino on my toothbrush. About the only thing that I've found to be fairly innocuous is drinking warm water. You can forget warm salt water gargles. Think about the cliche phrase "rubbing salt in the wound". That is what salt water feels like. Add to this list vinegar, acid foods, spicy hot food, hot (temperature) food, cold food, juices, cheeses, sweets anything with a texture to it. Basically, there isn't anything I can do to ramp down the pain, aside from keeping my tongue perfectly still, my mouth closed and bereft of food or drink.

This is insanity. More accurately, this is the kind of torture that can drive one insane. In gory movies, I've always squirmed out of my skin if somebody's tongue gets ripped out with a big scary set of forceps. Right now, I would almost pay to have my tongue ripped out. Almost.

I'm not sure why I'm writing this down, unless it is just to vent it in a civilized manner. There is nothing anyone can do. I don't have a doctor's appointment until next week, and I'm not about to go to the ER for this. Being an RN, I know how retarded that would be. Every night as of late I've been going to sleep praying that I'll wake up in the morning with a pain-free, ulcer-free tongue. So far, no luck. I don't think God really cares about tongues, and I believe that I just need to deal with this, ride it out, and do what I can to minimize the irritation. I think the only way to get rid of it completely would have to be a drug-induced coma about now.

This has been going on for 3+ weeks now. Prior to this event, I've had one or two ulcer here and there on a rare occasion, but this is ridiculous. Seriously ridiculous. And I am so over it. But I can't do diddly squat about it, so as usual, it's time to buck up and be British. Yeah, it's gruesome, but hardly like writhing in pain from pancreatitis or a kidney stone. Again, I could be wrong. All pain is individual and relative. Maybe I need to let up on myself; I've always been able to do this before. Right now, it seems like an implausible venture. What to do, what to do, what to do.

It's 2am and I'm going to sleep now, hopefully. Once again, I'm praying and bargaining with myself, saying "I'll do anything, please make this stop". Again, I personally think that this isn't something on God's radar screen. There's an entire universe to look over, after all. Just grow up man, and quit being such a big baby. To the rest of you, sleep tight and be well.




Doggydad's Life Now: The Viral Monologues by Parry Tallmadge is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
Based on a work at doggydad.blogspot.com.
Permissions beyond the scope of this license may be available at http://www.runnymedesilkys.com.

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When Segues Become Tangents and Tangents Turn Into Rants

It's been 2 weeks now since my last entry. It's not for lack of material or desire, it's more out of indecision. Every time I'm ready to start writing I'm finding myself wanting to talk about something completely different from what I was originally thinking about. Perhaps I'm over-thinking myself, but I think it's really more about my perfectionist bent and my desire to make this is real as possible. If I'm driveling on about what is to me, in the end, insignificant or unimportant, then it's a waste of time. As a result, I've found myself sitting on a topic for days (like social networking, for example), only to then decide that whatever I was working on at the moment really wasn't very significant or accurate to what is going on in my life at the moment.

At this point, I can't use that for an excuse. There is a lot that has happened since the last post, and it deserves to be dissected a little and then to be put to paper. Additionally, it is also my chance to update a number of people at the same time, answering what over the last few weeks have been my two most frequently-asked questions about myself.

The most frequently asked question has been to ask how things are going for me with the Interferon, if my body and mind are handling it reasonably well, and is it getting any easier or more difficult to deal with. The other question I'm getting the most is querying as to whether or not I know if the therapy is working, or when I'll know. I'll start there.

Approximately 2 weeks ago was week 8. I do the injection on Sunday evening, so that was injection number 8, and 4 days later I had my first comprehensive set of lab (blood) tests. Four weeks prior I had blood drawn that was mostly to make sure that the Interferon wasn't doing anything too deleterious to my body, but at that point it was too early to know if it was working. I didn't actually get peak blood levels of the drug until about week 4, so it's really not worth the expense of running the test to know if I'm having a positive response.

Small detour here to give a little medical lesson to those who don't really understand the physiology and pharmacokinetics at play here. If you're already up to speed here, feel free to check out for a bit. The best indication as to whether or not the therapy is working is to run a test to check my viral load. That means physically counting (by a computer, of course) an actual head count of the number of virus particles present in a specified amount of blood. The measurement used here is the number of log copies per milliliter of blood. Please don't ask me to explain logarithms, I'm not that great at calculus, and my understanding there is rudimentary at best. Suffice to say that what they are doing by checking log copies is to get a value that is more easily read by cutting out a bunch of zeroes.

At the onset of therapy, my viral load was about 2.3 million (log copies), which is high, but not by any means out of the realm of the ordinary in acute infection. It's a lot of virus, but not an outlying number. So to get to the point, my viral load at week 8, day 3 was undetectable. This is the eventually hoped-for outcome with Interferon, but it's not that often that you see it get that good of a response so quickly. I was, to say the least, both elated and a bit dumbstruck. I was hoping against hope that I would be in the 25 to 30 percent group that did respond to Interferon/Ribavirin (to be known hereafter as Pegasys), but I wasn't being so brazen as to expect that a good response would be so resoundingly good at such an early point.

If I'm coming across as not as excited as you might have expected at this news, I would have to say that it is probably because of a bit of disbelief. On the other hand, it's more likely that this good news has been tempered with a little of the good news/bad news syndrome stuffed into a big old reality check. Even though the response is so good, it doesn't shorten my course of therapy at all. It's still 48 weeks, mostly because I have Hep C genotype 1a, which is the subtype that is most tenacious and least responsive to Pegasys. As such, it is still the full 48 week course. And it's not getting any easier; to the contrary, it's more accurate to say that it's getting a little tougher each week. As I stated previously, I inject on Sunday night. That has meant for me that Monday is predictably a shitty day. As I've gotten further into the course of therapy, it's expanded out to Tuesday usually being shitty as well. Sometimes it goes into Wednesday or Thursday. A couple of times, it's gone all the way into Friday night or Saturday morning. It is never predictable, I can have a week that is crappy all the way into Saturday morning, only to inject on Sunday night, and then feel fine by Tuesday. It's not exactly like it's gotten sequentially worse, it would be more accurate to say that it's a crap shoot. I never know what I'll get when I roll the dice that week, but the big picture view right now is that it's not getting any easier. More accurately, it's getting a bit tougher as it goes along.

The other concern is that the longer I'm on therapy, the more likely it is that I'll have adverse events/reactions to any number of organ systems. It's already pounded my bone marrow (that wasn't that great to start with) enough to knock my white count precipitously and dangerously low. Luckily, there is another drug (injection, of course) that has been successful at getting my bone marrow to crank out more white cells. It's called Neupogen, and it's basically a hormone present in us normally that stimulates the production of white cells. To make the drug it's produced by recombinant DNA technology, and then grown on e.coli bacterial culture media (safe and non-infectious e.coli).

That's not the only organ system that has taken a hit so far. My thyroid gland is also taking a hit. Interesting that both of the problems so far have been to organ systems that produce hormones. Hormones are the chemical regulators that tell all the organs what to do and when to do it, so they are important. I shudder at the thought of trying to speak authoritatively about the endrocine system,or even understand that much about it; it's a very complex organ system. In school I probably had the hardest time with hematology (study of blood and bone marrow and their disorders) and endocrinology. How ironic that those are currently the two biggest concerns for me in regards to my health.

Now that I've made a short story long, I'll sum it up by answering the two above-stated questions thus: It's working and that is very good, but I have 38 weeks left, and that sucks balls. So I guess that all in all, I made the right decision, got lucky in the face of historically unpromising statistics, and for the time being it's full speed ahead, with lots of caution signs on the road.

One would think that with all the time that I've spent in my adult life obsessing about my health that this would be a cakewalk and that I might actually be used to it. In a way, I am used to it. You have to be when you live with a monkey like this on your back. But in another way, I'm not so used to it, because it never seems to be the same thing that is crops up twice; it's more like putting another card on the house of cards. I have made one rather astute observation recently though: it appears that I am unkillable. HIV has been trying for 26 years, and I've been supposedly been living on borrowed time for more than half of it. Then 2 different kinds of Hepatitis (A and C) within a two year span; still, my body fights on. I'm never quite sure whether it's a replay of one of the old circa 1940's war propaganda films where our boys always win, or if it's an off-screen real-life adaptation of Apocalypse Now. Sometimes I think it's both simultaneously.

Then, as if all that hadn't been enough, my car died on the freeway in the fast lane in the dead of night and I got rear-ended by a car going 65 mph that never saw me. The Explorer, or more accurately Ford Exploder, lived up to its moniker and burst into a blazing inferno, and me and my passenger AND my 3 dogs walked away, me with a concussion that I still have residual issues from, a broken finger that got jammed into the steering wheel on impact and bumps, bruises, scrapes, cuts and burns, gotten while I was pulling my dogs out of their mangled kennels with my bare hands as the flames from the gas tank were licking up my arms and torso. Two years later, if you drive past the accident scene you'll see a huge gouge in the freeway from when the engine from the Honda Civic that hit me got popped off its mounts and dug into the asphalt. You'll also still see burn marks in the asphalt on the freeway shoulder in the spot where the Exploder exploded, and the massive steel top rail of the guardrail snapped, when a big weld on a big thick piece of steel popped like a stick when my car careened into it.

Oh Lordy, it is fun being me,even if it is one hell of a ride. I swear, I must have the 9 lives of 99 cats. You might say "drama queen", and I'll say "possibly guilty, somewhat", but all of these incidents were uninvited guests that showed up at the door to the party called My Life. If I invite drama, it is not intentional. I would love, at least for a while, to have a boring, uninteresting, banal little existence. When I get tired of it I know how to stir things up, but for the time being, let's turn the volume down for a little.

I don't want any attention. To the contrary, I would be more than happy to be Mr. Cellophane, wallflower, slouched in the corner, ignored, quiet, observant and taking notes. Ironically I started doing drag 2 years ago to get myself out of this social phobia rut I was in, but now I wonder if I should have let the genie out of the bottle. I would love to get him back in and go back to being ignored and (assumed to be, but not really) uninteresting, but I'm not sure if that is possible. I've always by nature been an observer, an amateur sociologist, or more accurately, sociological anthropologist. I like to watch, unnoticed. That is one thing I always loved about being more of the aloof/socially awkward type: you can disappear and/or go unnoticed, but in reality, there is no better show than life, and when you stand back, shut up, open your eyes and take mental notes, life is the best free stage show in town. If you can chalk up any good from being bullied in school, I offer the following: 1) it makes you more observant, 2) it thickens your skin. There really isn't a lot of insults that you can throw at me that I can't let roll off my back; you do what you have to do to stay alive sometimes. And finally, 3) it teaches you how to disappear.

Don't get me wrong; when I am in my comfort zone and in the company of people I trust I can be quite gregarious. Sometimes that isn't the case, but I can do it. But put me in a crowd of unfamiliar people, especially in an unfamiliar environment, and I'll clam up on you faster than a mafia thug in an FBI interrogation. That's not changed a lot since childhood, except that I've just developed more social survival tools. I have learned this simple credo to be very helpful to me. I have said this many times and it still rings true: there are three keys for the introvert to maintain peace and sanity: Keep your mouth shut, your eyes open and your hands busy.

I have so many directions to go. I've been sitting on some of this material for over a month now, but it's 1 am, I'm tired, and the screen is starting to get blurry. Teaser alert: in one of my next few essays, the topic of discussion is about something that has really gotten under my skin lately: the social internetworking phenomenon. I'm as guilty as most; I have Fakebook and MySpace pages, but I hit them tonight for the first time in over a month, maybe even two months. I refuse to Tweet. Don't even ask, it won't happen. I don't need to know every time you take a dump or trip on a crack in the sidewalk. It really isn't that interesting to me. I text, but I am becoming increasingly aware of what a cop-out it is when you have to say something that is crunchy. It's a one-sided conversation without a voice.

But this is getting dangerously close to crossing over from teaser to spoiler. I need to leave myself at least a couple of nuggets for the next essay, because let's face it kids: I'm really not that interesting. I'm just really good at making myself sound interesting. So let me leave you with what may possibly be my final status update that I posted on FB and MS tonight: "Parry Tallmadge will be on an extended sabbatical from social internetworking. If you want to network with me, call or visit me. If you just want to know what's up, read my blog: doggydad.blogspot.com, which ironically is overdue for an update." 'Nuf said?



Doggydad's Life Now: The Viral Monologues by Parry Tallmadge is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
Based on a work at doggydad.blogspot.com.
Permissions beyond the scope of this license may be available at http://www.runnymedesilkys.com.

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The Age of Innocence

A couple of days ago, I saw the movie "Pan's Labyrinth" for the first time. Funny, this is one of several movies that have fallen victim to this odd quirk of mine: I refuse to follow the crowd. In regard to cinema, this means that if a movie has amassed a lot of critical acclaim before I see it, I will often refuse to go, just to be the contrarian. There are a few notable exceptions to my rule and they include:

I love the director and never miss a movie that they make.
I read the book and loved it, and think that it will translate to the screen well.
It stars an actor whose movies I rarely miss.
Somebody I REALLY trust tells me I need to see it. There are about two people that fit that bill.
The storyline is one that I find so compelling that I'll see it.

Other than that, I'll often just be Contrary Parry and refuse to see it, for no good reason. But on that day, as I laid glued to my sofa in lethargy, I was going through the list of movies that I had available on Netflix on my "Watch Instantly" queue. For some reason, it jumped out at me, and trusting my intuition I watched it.

Spoiler alert: If you haven't seen "Pan's Labyrinth" and have any inclination to watch it, stop here. I'm going to go into some detail that would definitely spoil it for you, and since I hate it when somebody spills the tea to me, I'll give this warning now. Another caveat: I'm going to make the assumption as I write about this that the reader has seen the movie. If you're haven't seen it yet, but are really interested in what I'm going to talk about, then I really recommend that you see the movie first, since I'm not going to do a running synopsis as I write. This story isn't going anywhere, come back after you've seen the movie.

Watching this movie had an impact on me (actually, many moments of impact) that I did not expect. It illuminated and explained in a new way a lot about my beliefs and the path that I have chosen. It would not be outside the realm of possibility that the book could be a mythic tale; one written to tell the story of A Course In Miracles, which is what I study. I'm making the assumption that the director or screenwriter is not a Course student, but I could be wrong. Regardless, it really gave me some excellent visual and theoretical metaphors for some of the more complex parts of the course, laying them out beautifully, visually and artfully. I might go more into that in another post, but I really don't want to talk about my belief about God here. That isn't my style, and it's not what this story I'm telling is about.

There were a number of universal "life's themes" that it deconstructed very well and presented in a visually stunning manner. This is really where I want to go. A few of these themes are ones that occupy a lot of my time that I spend thinking about the big questions in life, especially of late. If one only scratches the surface, these themes may seem to have little to do with where I'm at right now, but that is far from the truth. Having a lot of down time has been frustrating more often than not, but I've also found more ways to make constructive use of the time. What I've found most satisfying is reading, writing, watching movies and pondering. All these activities go quite nicely together, so as my energy level and interest level has dictated, I've been putting a lot of this down "to paper", more so than anytime I can remember in my life. There are just some really important issues that I've confronted, and I know that with time these memories will fade. I've learned a lot lately, more than in any other period in recent memory, and to lose what I've learned seems to be such a shame.

Innocence is one of the big universal themes that I've been thinking a lot about. This movie was, in so many ways about innocence: how precious a commodity it is, how and why it is usually never regained once lost, how it is lost, and finally, what makes it both, and often concurrently, a priceless commodity, and a dangerous vulnerability. In this movie, I think innocence is really one of, if not the central theme.

Innocence really is a priceless intangible. I know few people that are so jaded that they can't smile and be amazed at how imaginatively a child's mind can work while they still have their childhood innocence. It really is a wonder to behold, at least to me. I've always loved children, and if I have any big regrets in life, my biggest one is probably that I didn't have children of my own. It's a moot point now: I'm too old to start parenting a child, even in the best of health. With everything that I'm dealing with now and how fragile everything is (or seems to be), it would be a preposterous proposition for me to even think about, much less undertake.

But back to the subject. For me, there are a few questions and observations that have struck me as I think about innocence:

How it is lost? Do the disappointments and limitations that children hit the wall with as they mature slowly jade them, chipping away at it bit by bit, until the fatal card is pulled and the house of cards falls?

Why is the loss of innocence inevitable?

Why can it, like virginity, never be had again once lost?

What are the experiential differences that happen when it is gradually and "normally" lost, and when it is stolen away?

Does it wound more deeply and mortally when it is stolen (usually through a trauma inflicted by another person, usually an adult, sometimes an older child)?

Does it feel any differently when it is lost suddenly but not maliciously, possibly accidentally (for example, the loss of a parent) versus being taken purposefully?

I'm really not sure if I can answer many, if any of these questions. More likely I can answer the ones that mirror the experiences that led to my loss of innocence. But back to the movie, which was for me a revelation into the strength of the human spirit and the normal resiliency of a child's psyche. Some kids just seem to be able to shake off more than other kids and still look at the world through fresh innocent eyes. Ofelia experienced unimaginable horrors through the course of the movie; witnessing the horrible violent and bloody death of her Mother in childbirth, watching the sinister and sadistic cruelty of an extremely stern (to say the least) stepfather, and being witness to his cruel, torturous and calloused homicidal behavior. She was a witness to the ravages of war and the fear engendered by those in power, against those innocents living under a fascist regime. Despite all of the horrors that she witnessed and/or was a victim of, her innocence did for the most part remain intact, despite some significant chinks inflicted into its armor.

Though this was a fictional story, this isn't unprecedented. I think of some of the amazing stories of people who were able to keep their innocence despite horrendous life experience, sometimes even keeping it for the remainder of their lives: I'm immediately thinking of people like Ann Frank, Helen Keller, Peace Pilgrim, Mother Theresa, Martin Luther King, Deitrich Bonhoeffer, The Dalai Lama, Ghandi. Interesting that women came to mind for me more instantaneously, for whatever that is worth. For my contrarian readers, let's get this one out of the way right now:

For those who would challenge me as to whether any of those mentioned previously could remain for the most part innocents to the grave, especially the ones that lived into old age, I give the following argument:

Any of the people on this list could have let the atrocities that they experienced and/or witnessed in life jade and callous them, but to the end, these people really saw and expected the best from humanity.

It is amazing to me if only because I know how petty and/or victimized I can appear to feel at times, especially in the face of hardship. Honestly, I think that for the most part, my hardships pale to what these people faced, but that is irrelevant to this discussion, and I want to avoid judgments if possible. If it were me facing these challenges, I don't think I could have 1) kept that trust in the human race they showed through their actions, or 2) keep on going in the face of what seemed likely to be around the next corner. I don't really consider myself a quitter, but I don't think I have that kind of intestinal fortitude.

Back again to Ofelia: in the face of all this unprecedented cruelty and pain, she was able to stay innocent in spirit and trusting in fate. When told that she needed to sacrifice the blood of an innocent, and as such, needed to hand her newborn brother over to Pan in order to save his (and her) true world, she refused, even though she had to that point trusted him implicitly. I can hardly imagine the feeling of such a burden, made heavier by her knowing that she was the last mortal to walk the earth that could save hers and Pan's world, since she was the only human that was of that world, not ours.

As I watched the movie unfold, especially the last 20-30 minutes, I saw what was coming. It was such a close parallel to The Course that the ending seemed obvious to me. I knew that she would not sacrifice her brother when it came time to decide whether or not to blindly follow and obey the dictates of somebody who, up to that point, she had trusted. I also knew that would lead to her demise, but until her blood was spilled down into that pool at the bottom of the seemingly unending staircase, I didn't quite trust what would follow her "death". Her death was illusory, and though she didn't yet know that, she trusted her intuition and her moral compass.

Seeing death as illusory is so central to The Course. As I've studied it, I've found myself becoming far less fearful of losing this mortal body. I'm not tempting fate and inviting my demise mind you, but I do understand and believe on a deeper level that this life is really illusory to the core. This belief is also central to Zen Buddhism, probably almost the mirror to The Course in the Eastern mind.

As I was watching those final moments unfold in the movie, I was able to put myself in Ofelia's shoes. Probably, for the first time in my life, I could look at this situation completely devoid of my usual fears, and see myself make the same kind of choice. At this point in my life, I now have a far better understanding of the value of trusting in my faith, values and morals, and looking death fearlessly in the face. I remember having that kind of fearlessness and trust as a child, and though I couldn't explain why at the time, I just knew when to trust. I also believe that living on the edge of mortality for nearly half my life has something to do with this change in me as an adult, but then I also know that it is founded in my maturing understanding of God's plan and my place in the grand scheme of things.

This is very comforting, considering that up until a couple of years ago, I felt I was in a chase with death and on the verge of losing. This went on for year after year. Now, I know on a much deeper level that my time will come when it comes. As such, I can live my life more fearlessly, lovingly and joyfully, and with a more open heart. I don't fear death; I can't control when I will meet the end of this mortal life, so it's really a waste of time to fear and worry about it.

There are a couple of upsides here. First of all, it means that I can breathe more easily and live much more in the moment, both watching and experiencing my life unfold. I can spend far less time fighting: fighting my body, fighting the system, fighting Ken's family, fighting my fear. My credo used to be "pick your battles", and it sort of worked for me for a long time. It did allow me to not sweat every little possible thing that could go wrong and/or let go of the feeling that I needed to fight a battle that was a losing prospect from the start.

This has matured into a far more pleasant attitude as of late: there are no battles worth fighting. Fighting, by its very definition, and more generally the whole concept of conflict, is a dead paradigm. I have found it far more pleasant and easy to just not fight. This is not the same as rolling over dead and letting the world trample over me and my white flag. This isn't surrender, it's letting go of what doesn't matter. I will continue to speak my truth and try to walk my talk all the time (emphasis on "try"), but more and more, I'm finding that all battles have no winners. As for me, I will trust in the natural rhythms of life, speak my truth and work with the hand I've been dealt.

So then this brings me back to my original question: is it possible to regain innocence once it is lost? Up until recently my answer would have been "Impossible!". But now, with these new lenses (not necessarily rose-colored, for the record) that I'm seeing my life through, I have to think that I have actually regained at least some of my innocence. And to take this to the next step, I don't think that this is a bad thing.



Doggydad's Life Now: The Viral Monologues by Parry Tallmadge is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
Based on a work at doggydad.blogspot.com.
Permissions beyond the scope of this license may be available at http://www.runnymedesilkys.com.

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