Until about a year ago, I was a well-fed, well-rested, not unfit 205 lb specimen of human male-hood. I ran two marathons in this state of corporal abundance. The first one, I finished in a leisurely 5 hr. 23 min. Despite what a lot of people say, I cannot feel anything resembling pride about this “achievement”.  While I have no misgivings about competing with the elite runners, I cannot come to terms with the fact that other human beings can run 26.2 miles in less than 2hr.30min. and I can not run it even within DOUBLE that time! An indication of how badly I had run my first marathon is the fact that the second time I ran the same race I slashed off almost half an hour (4 hr. 54 min) without doing anything differently. The reassuring thing was, there seemed to be scope for improvement. The disheartening thing was, I was still tens of miles away from being considered the same species as legitimate runners. It dawned on me that the aforementioned 205 lbs were a problem. So there were two ways to go from here. Either accept that there was a problem and DO something about it OR say running marathons ain’t really a priority, the whole thing is just not worth fretting over and move on. The latter obviously presented itself as the easier and therefore wiser of the two alternatives and I was happy to eschew these periodically self-inflicted doses of physical pain. This would have been a perfectly satisfactory tale of challenging oneself, coming up short, and reverting to the convenience and mediocrity of one’s day to day existence. Alas it was not to be. I got angry and inspired and a little more angry and…

Details of circumstances that led to it are irrelevant but very soon after my second marathon and reconciliation with the eminently bearable heaviness of my being, I re-visited running. Some really testing times personally and professionally resulted in a desire to inflict pain on myself on a daily basis. Running turned out to be an effective refuge from the vagaries of adult-life. A bit of dietary discipline and regular running to my genuine surprise brought about enough of a physical change (I lost 40 lbs) to encourage thoughts of trying to run a more respectable marathon. No matter how rational one thinks one is, one’s ego almost always prevails and it tends to take one in directions that are not entirely consistent with logic and objectivity. That said, there was something to the fact that I had rather fortuitously lost all that weight and if I thought it was the weight that impeded my running form before, then this was as good an opportunity to put that hypothesis to test as I was ever going to get. I therefore got back to the old routine of dragging myself out of bed on weekends to run tens of miles, going for runs in the middle of work days, lifting weights and all that goes into training for a 26.2 mile run.

It definitely felt different this time. In the past I could rarely summon the energy to run on consecutive days. Now my legs were responding to the weight loss and were taking a lot less time to recover. I could go for a reasonably painless 4 mile run the day after a 12 miler. And the speed! The change was gradual, because of which I did not realize in the beginning that I had cut a minute to a minute and a half from my mile time. A seven minute mile was now comfortably within the realm of possibility. So with great trepidation but encouraged by more experienced and knowledgeable  friends, I finally dared to dream of running another marathon in a decent time. As a test I ran the half marathon at San Francisco and I finished in 1 hr 42 min which was in excess of 20 minutes faster than my previous best. This put a serious spring in my step and incidentally also prompted the aforementioned blog named “what I think about…”.  Next up, the full marathon at Sacramento on the 6th of December.

Once the mileage entered the serious double-digit regime, I realized that while losing weight is a legitimate first step, it is not enough to go from weekend hack to a serious runner. There is much more to the physical infrastructure required to run 42 kilometres, a lot of which I had not put any real work into. This became particularly obvious the first time I attempted a 20 mile run. I barely lasted 15 miles and then unraveled spectacularly. I managed to walk the next 2 miles and then every muscle I needed to move forward literally locked up. I could not help get a little discouraged because I was surrounded by people who did this sort of thing with a lot less drama. Also the thought that I barely had a couple of months to go before race day and I could not get withing 10 miles of the finish line without disintegrating physically and mentally put a serious damper on my mood. I spent the subsequent few weeks healing (physically and mentally), followed by a few more attempts at 20 or more miles. In the meanwhile as I stated earlier, I was also lifting weights with one of my athletically gifted colleagues once a week to improve overall fitness and core strength. This colleague, whose expertise I availed of occasionally, rather cruelly put the idea in my head that in my present state of presumably enhanced fitness I should be able to run the marathon in 3 hr 30 min. Needless to say the mere suggestion of such a possibility did wonders to my ego and I very conveniently forgot about the setbacks I had suffered just a few weeks ago. In my mind I had overnight become someone who routinely runs marathons in 3 hr 30 min. If anything good could come out of such a delusion, it was that I enjoyed extraordinarily high levels of motivation the last weeks of my training. Given that I have to work for a living and lead a fairly complicated life I gave training my most inspired shot and I ran 20-odd miles twice before race day. I thought I was in fairly good shape and on track for my first sub-”3.30″ marathon.

So I finally arrived in Sacramento on the 5th of December 2009 to collect race essentials like the bib number, and the timing chip. I spent a fairly happy evening thanks to the company of friends in an otherwise dreary town and got as much sleep as one can get in a state of apprehension that tends to precede events like this. 6th Dec. 2009, 5.00 AM, while running to catch the shuttle to the race start site, I promptly dropped one of my gloves. The temperature that morning was about 35 degrees F, and with the wind-chill factor it felt like 25 degrees F. So losing the glove was not ideal. Even with the protective clothing I had on, the 40 or so minutes I spent before the start were absolute hell and warming up was near impossible. Needless to say while I was bitching and whining about it to no one in particular in spite of multiple layers warm clothing, the place was teeming with people rather nonchalantly clothed in nothing more than a singlet (or less) and a skimpy pair of shorts. Forgive me for feeling a bit evolutionarily short-changed. Anyway we finally got started at 7.00 AM and I started running in what seemed like a sea of very fit human beings. The adrenaline rush took care of some of the weather related misery, and I caught up with and kept pace with the 3.30 group quite comfortably for a while. One exposed and frozen extremity however (the lost glove coming back to bite me in my cold anatomical posterior), is as bad as two and the discomfort was quite palpable by mile 5. Nevertheless most of my running infrastructure was feeling OK and I actually overtook the 3.30 group for a while. By mile 10 I had to stop a couple of times to tighten my shoe laces and I realized I had lost sensation in the exposed hand, which resulted in a significant loss of dexterity.  This would have been a minor inconvenience if not for the realization that I was not really warming up. In fact after the 10 mile mark my quadriceps started tightening up. They say marathon running is for the most part mental. I can now vouch for the veracity of this statement based on what happened during this race. Once I started feeling the tightness in my quads, the first thought that came to my mind was, WHY? Why, in spite of all the training am I falling apart this early in the race? This sort of negativity leads to denial, which in turn leads to bad strategy, and then of course real catastrophe. What I should have done was slow down, eat something, replenish my electrolytes and once I started feeling looser, to continue at the desired pace. What I actually did unfortunately was nothing of that sort. I continued to push myself to stay ahead of the 3.30 group, because I WAS NOT SUPPOSED TO SLOW DOWN DAMN IT! I completely ignored what my body was telling me and in stead went with some ill-conceived notion of how things should be on paper. By mile 15 I was in a lot of pain but then mentally I had reached the point of no return and there was no time to re-assess the situation or to re-think my strategy. I kept at it for another 4 miles and on mile 20 I had a head on collision with “the wall”. My physical and mental disintegration was spectacular and I am sure was immensely entertaining to all the onlookers who by the way I resented more than anything else at this point. Especially the ones who were being kind and offering to help. It did not look like I would be able to finish the race. By now the 3.30 pace group was long gone (this happened some time between mile 15 and 19). Some stubborn recess of my mind kept my body moving forward and by mile 21 the 4.00 pace group had passed me.

Any hope of finishing in less than 3 hr 30 min had completely disappeared and I was beginning to wonder if I would be able to cross the finish line upright. Of course to make things really complicated, the ego was now in tatters and the self loathing had taken over in all its glorious strength. IF I finished the race at all, I was looking at another mediocre race and this after months of training and losing almost 20% of my body weight. It was the wrong time for calculations of this sort. I called myself all sorts of unprintable names and mentally demoted myself to a less evolved, sub-human, and barely intelligent carbon based life form. Just as I was about to completely give up and demote myself further from a biped to a quadruped, my wife Maya called me on my cell phone to ask how things were going. I also heard my daughter Ila’s voice in the background. I would love to tell you this provided the impetus for a really fast recovery and I went on to tear the rest of the race apart but I am afraid the only thing this actually accomplished was it made me want to curl up on the curb and cry.

In the mean while I still had some active vestiges of survival instincts that made me swallow a few salt tablets, eat and drink as much as I could and KEEP MOVING.

Giver of gu, saver of lives.

By mile 22 I was beginning to feel the effects of these measures and the pathetic little shuffle I had used to maintain forward motion for the previous 2 miles slowly but surely turned into a decent stride. 5 more miles did not seem impossible and I started making up lost ground. By the time I got to mile 25 I was sure I would finish the race, which in itself was a relief and I also did not care much about the time any more.  However it definitely helped to realize that I had almost caught up with the 4.00 group.

I was in a world of pain. My quadriceps were now screaming in lactic acid induced pain, my abdominal muscles were going into spasms, my calf muscles were contracting into geometries I did not think they were capable of assuming, MY TOES WERE CURLING UP INVOLUNTARILY IN MY SHOES AND THERE WAS NOTHING I COULD DO ABOUT IT! My heart beat had lost all semblance of rhythm. My FINGERS were cramping. In other words the minutest part of my body was in active and painful rebellion against the abuse I was subjecting it to. In the incoherent mess that my mind had devolved into, one thing was crystal clear.  If I had to crawl the last mile, I was going to finish the bloody race.

A mile as perceived by a runner on mile 25 is the not the same as the hypothetical last mile that comes up in polite conversations. For the runner there is nothing civilized about it. Poise, dignity, style all these become mere words, which in the end are of absolutely no consequence to one’s ability to come out of this experience in one piece. The strength one needs to hang on to the last bit of consciousness just long enough to cross the finish line is a bizarre amalgam of visceral, intellectual, and spiritual. Mostly it is war against one’s most fundamental propensities to achieve something that by far exceeds one’s potential. As it turned out I was able to combat the urge to take it easy and to give it everything I had, which frankly couldn’t have been much, and most certainly had neither poise, nor style. It was ugly but spectacularly so. And I reached the last 0.2 miles ahead of the 4.00 group.

Yes there were those last 352 yards. Nothing I say can surpass the elegance of what Haruki Murakami says in his book- What I talk about when I talk about running: “Nothing in the real world is as beautiful as the illusions of a man about to lose consciousness”. Everything in the past, and all that is yet to come, through the perspective one achieves in this state of semi-consciousness, seems more beautiful than it ever did or will. The need to feel this heightened appreciation for “being” is probably what induces one to put oneself through something like this more than once, which brings me to the subject of what the future holds for running and me.

I finished in exactly 4hr.00min. It was disappointingly far from the rather ambitious 3hr. 30min. goal I had set for myself.

Alive but not quite kicking.

I carped about it a bit immediately after the race because that is who I am, but I would be an idiot to leave the fact that I was 54 minutes faster than my last marathon unacknowledged. Still slow but faster than I have ever been and I am yet to explore all available avenues for improvement.

Yes this is how I do 'ecstatic'.

The training regimen was not futile and it is very satisfying to see something you do bear fruit, however small. Believe me, I know what I am talking about. I am a research scientist. 3.30 still beckons. I will continue to pursue it and if I get there I will set the bar a bit higher till there is life in the legs, which, barring injury, I am told is reasonable to expect till the mid 40s after which biology takes over making ‘improvement’ much more difficult if not impossible.

Crazy, you think? Maybe. Everyone is allowed a vice. Consider this mine.

I would love the bliss that particular brand of ignorance affords. A year and a half ago when I first read the play, I found it impossible to stay objective and treat it as “just” another piece of literature.  I remember Maya and I were at Barnes and Noble and I was looking for something new I could sample. I came across this book in the recommended summer reading section and picked it up because 1. It was one of those books I wanted to read since a long time but never really got to for no good reason, and 2. It looked slim and I thought I could finish it in one sitting. Slim, it was, finish it right there in one sitting, I did. Light summer reading, it was not. I am not being dramatic when I ask myself now- how can reading “Death of a salesman” be anything but cataclysmic. I am not ashamed to confess, I wept.

So what IS it about?  As too many people have probably already said and written, it is about self-awareness. It is about the impossibility of the situation we are all born into, which involves a life long struggle to KNOW oneself only to be followed by the devastation that entails such knowledge. Self – It is such a loaded and lethal word. So powerful. It consumes such a large fraction of our physical and intellectual energy. It is the motivating force behind ALL of our miserable existences and yet how many of us can really claim to know our ‘selves’? I think this is the purpose of true art. This is it. I have finally understood what art means to me.  It is anything that facilitates a moment of clarity, an iota of comprehension, a nanosecond long glimpse into my (true) self….I must however thank heavens for the brevity and rarity of these moments. Over the past few years I have slowly but unmistakably come to the conclusion that I am not one of those fortunate souls for whom self-awareness and self-respect can peacefully coexist. The more things I understand about my self the more in touch I get with the absurdity of the whole thing, the more aware I am of the increasing dishonesty of everything that constitutes my belief system. Art compels me to ask questions that expose everything that is false about my self. Yes Death of a Salesman is a magnificent piece of art. Its greatness is measurable in the colossal amounts of pain it has caused me. It is special however, also in that it brings home the fact that there is nothing one can do to extricate oneself from this mess. The only way one has to surmount this massive hurdle in the pursuit of peace is…to accept. Willy Loman is the embodiment of our life long struggle to know and the ultimate fatal failure to accept.

Arthur Miller was 34 when he wrote Death of a Salesman. My usual modus operandi is to restrict my appreciation of art to its meaning for me and not worry too much about the artist’s mind set. But I can’t help but believe that Miller was afflicted by all the angst (aaaahhh that dreaded word again) that comes with being 34 and useless. “Finding yourself “at the age of 34, as Willy says, and most fathers would tell their sons, is a disgrace. Fortunately he had this moment of inspiration and spewed all the venom onto the pages of what has turned out to be the bane of this other 34 year old’s equally angst ridden existence.

This my friends is my tortured and confused discourse on what I feel about Miller’s tour de force. I am afraid I feel too much, know too little and accept nothing.

Why do I run? Of all the activities I could pick as a hobby (if that is what this is) why did I pick something that, to be perfectly honest, is most of the times for want of better words, excruciating? I am not a natural runner and definitely do not have the benefit of genetic predispositions that translate to prodigious physical gifts. Why then have I wandered this far outside my comfort zone to distract myself from and deal with the angst that entails normal adult life? I have not made the most optimum transition to adulthood and the words achievement, dignity, and poise are very conspicuously absent (I am only half kidding). Why then have I taken on another thing to be mediocre at and agonize over. It all seems too counter intuitive. Could there be a rational explanation?

The fundamental motivation behind taking up something like running for people like me is not being better than other people who do this sort of thing.  It is better categorized as the desire to do one’s best and not have anything other than one’s own satisfaction at stake. The fact that other members of ones own species can do this with ease and proficiency greater by orders of magnitude doesn’t even enter the picture. The impetus lies in the desire to see measurable improvement in oneself and the satisfaction that comes with it. It is hard to imagine being happier than I was when I slashed 20 minutes off my half marathon time. At the age of 34 I IMPROVED. Physically and mentally (there was actually a strategy to my run yesterday). I am finding it increasingly difficult to maintain any level of optimism with everyone I talk to lamenting some sort of loss (of youth, of vitality, of intellectual curiosity…). It seems like there is nothing to look forward to. So when I am killing myself to drop a few minutes off my running time, I am waging a symbolic war against this phenomenon of dissipated morale and joie de vivre and every slashed minute emphatically signifies success. And I will take every little bit of that I can get. Haile Gebrselassie will probably disagree with my concept of success but need we really care? There is of course also the biochemistry.

Anyone who has read a health magazine or has access to the internet knows about the endorphin release that happens after a work out or a run. It is called the runners high. One doesn’t have to have a Ph.D in Biochemistry to understand that pain stimulates the pain-relief mechanism which involves the release of euphoria causing chemical entities (endorphins), which in turn engender the transient state of mental well being. One also doesn’t have to stretch one’s imagination too much to believe that this feeling is addictive given the prevailing sense of gloom (what with lost youth and innocence and all that..). So no one should need an explanation for why I begin training for the California International Marathon in Sacramento on the 6th of December. I vow to savor every little ache and pain and lest I look too smug I shall disguise my glee with winces and grimaces.  I vow to get as high as a kite and stay that way well into my geriatric years. By the way this guy called Guillermo Gonzalez came in second in yesterday’s full marathon at 2h 33min, which for this course is incredibly fast. He is 45 years old. Scientifically speaking I am pretty sure I will never be that fast but does anyone honestly feel entitled to tell me I cannot dream of it? Especially if it makes the next 11 years of my life REALLY interesting.

Turns out the little girl has too much fight in her to let a bit of adversity, unspeakable pain, and a constant threat to her life interfere with her indomitable sense of FUN. She wouldn’t stop smiling, and constantly wanted to go gallivanting in the sunlit corridors of LPCH, charming the heck out of a very large community of the world’s best health care providers. Maya and I very willingly became extras in the grand prime time 24/7 production called ILA.  Tens of tests were done on Ila and Maya (who was chosen as the live donor of the left-lateral lobe of the liver) and the day arrived sometimes I think too soon and sometimes not soon enough, I still don’t know which…The transplant was performed on the 11th of December 2008 by a team of surgeons who I am in awe of more than any other group of human beings I have ever met. I would gladly surrender my ego to these Gods and offer them my life long servitude if I did not know it would only embarrass them.

They first took Maya in and it needs to be said how beautifully selfless the maternal desperation for a child’s survival is. It is basic, it is probably the one true bit of purity the human soul will retain after all is done and said. The poetry of it all was fortunately a bit lost on me at the time, otherwise it would have broken me all the way and rendered me useless. Art can do that to weak hearts. Dr. Waldo Concepsion came out in about 5 hours waxing poetic about how gorgeous Maya’s liver is. There was apparently art and poetry everywhere. Visceral art. I shall not talk about the moment I saw Ila off into her OT. I choose not to remember anything.  It would have made for an impossible day on my own but I have friends. I talked their ears off , I don’t know about what and they listened. At least that is what I remember. The moment of truth came and Dr. Carlos Esquivel delivered the verdict – SHE is doing well……..and oh by the way she had the sickest liver I have seen in a long time, so it was the right time to do this.  Esquivel wasn’t very poetic in his style of delivery. Need I say his message was nevertheless the sweetest music to me.

Post-op Ila showed HOW badass she really is and shrugged off the whole recovery process with a characteristically brilliant smile. Nothing to it. That’s done, let us move on..she seems to be suggesting. Maya has recovered too, I am happy to report. I am still hanging in there.

The key to effective management of the condition is  early diagnosis. It is said that diagnosis within 8 weeks of birth is key to treatment. The only available treatment is surgical. The procedure is called Kasai’s Hepatoportoenterostomy. ~70% of patients who undergo this procedure eventually need a liver transplant. This can be within a year or two after Kasais but it could also be a couple of decades in some cases. There seems to be a large amount of subjective variations in parameters used to monitor liver health. There are therefore no reliable markers that could help predict the likelihood of needing a transplant.

Ila was diagnosed when she was a little over 8 weeks old. She immediately underwent the Kasai’s procedure and she responded well to it. She did have some post-operative complications that are characteristic of this procedure such as Ascending Cholangitis and Ascites, but her total bilirubin levels did come down to almost normal levels and most of her liver enzyme levels showed only moderate elevations, which augured well. She however has started to shows signs of mild jaundice again at the age of 5 months and has also shown a sub-optimal growth rate. I asked her gastroenterologist if this means she is gradually but unmistakably moving towards a transplant and she suggested that she most likely IS.

So there. I don’t know if this is some sort of a coping mechanism but I have decided that I shall learn as much as I can about Biliary Atresia and document everything, which I think will help me organize my own thoughts and also help others who are concerned about Ila’s progress understand what is happening. While there is a lot of information online my intention is to consolidate a large amount of it in one place and also to provide significantly more detail than most of these sites do. This post will serve as an introduction (as the title suggests) to hopefully a series of posts that will tackle a variety of aspects of Biliary Atresia such as the anatomy of the bile-drainage system, the gastrointestinal importance of bile flow, therapeutic strategies, ‘statistics’ (maybe – I find this aspect of medicine really flaky and misleading) etc…

I look forward to doing my utmost to equip myself with as much knowledge as I can, which I believe is the key to dealing with what promises to be a rough couple of years primarily for Ila and consequently us (Maya and me).

I don’t mean to reduce what is obviously a beautiful thing into something that is perfectly explicable by an exercise in scientific logic. However in light of what happened yesterday I need to rationalize the ridiculously intense mixture of helplessness, rage, and desperation I felt when Ila, my daughter, was carried out of her mother’s arms crying into what seemed like an abyss of uncertainty (the operation theater), to remedy a bit of a developmental mess that she got herself into while she was busy becoming herself ensconced in her mother’s womb. She decided she could do without a gall bladder and a bile duct, which, as it turns out was a preposterously wrong assumption on her part. Needless to say, at the tender age of two months she had to undergo one of those “frighteningly long (5 hours) marvel of modern medicine” kind of procedures rather intimidatingly called Kasai’s portoenterostomy. As scientific and objective as I think I am, the terror at the thought of her under the enormous physical stress of such a procedure was too much to handle.

In the 5 hours I spent waiting for her to come out of surgery I went through a thousand kinds of hell and the excruciating pain I felt at the thought of HER pain and her heartbreaking helplessness , I now think, could be one of the most decisive factors in favor of the long term evolutionary health of the human race. Human infants are probably among the most helpless in the animal kingdom, in spite of which a very large number of them thrive and reach adulthood. While I would probably be wrong in assuming that this is on account of a superior nurturing impulse in human parents, I must say we as a species do take the welfare of our children very personally. In other words a more evolved brain doesn’t necessarily equip us with better coping mechanisms but on the contrary it makes our disintegration that much more spectacular.  In other animals harm to the offspring from disease, or predators is dealt with quite effectively, even mourned in several cases but I doubt if there is another species, in which parents “fall apart” as absolutely as we do when confronted by suffering of any kind among our children. Even more remarkable is the fact that this “attachment” is as intense and prevalent among 60 year old parents of 30 year olds as in 30 year old parents of newborns, i.e., it never goes away, we never get over it, we do not move on.

And why should we? I think it is beautifully paradoxical that an instinct that leads to such devastation on an individual level is also potentially one of several things that will keep us as a species extant. Isn’t it marvelous that in the bloody mess that the natural world is, something this tender becomes such a decisive advantage in favor of the viability of a species?

I hope to periodically post random musings about nothing in particular, which could sometimes evolve into epic rants (I promise to try and make them entertaining).  SO welcome to my blog and I do sincerely hope to remain obscure enough not to be a subject of Norman Mailer’s very justifiable disapproval.