Head Tale

Someone posted a link to this essay on FB and I wanted to repost the whole thing here as I thought it was very well-written and thought-provoking…

Yesterday, I had a bone marrow biopsy to see if there were any prospects at all of a rejuvenation of my bone marrow.  Alas, there is not. My bone marrow is virtually empty and what cells are there are to a significant extent blasts.  Dr. Michaelis told me that even if we were to wipe out the remaining blasts, I would be far too weak to even attempt another transplant.  A transplant is off the table, and a transplant was always the only prospect for a cure. The only thing that’s keeping me alive right now are blood transfusions of red blood cells and platelets.  All of my platelets and all of my red blood cells come from donors, from ordinary blood donations. Unfortunately, the way this disease works is that gradually my liver especially, to use Dr. Michaelis’ expression, chews up these transfusions, and you get increasingly less benefit from any given unit of blood.  And at some point, no benefit whatsoever.  You get a unit of blood, but your hemoglobin will not rise.  And when that happens, you basically cannot sustain life any longer.  So the scenario is basically when you approach that period–it doesn’t happen abruptly, it happens over the course of days and weeks–you sleep more and more, your body is getting less and less oxygen, 15 hours a day, 18, 20, 24; you’re not in a coma, you can be roused, have sweet words of love, maybe even more extended human communication than that.  But then eventually you just begin to sleep all the time and, I assume, fade away.  That would be the AML equivalent to dying in your sleep.  You just, at one point, sleep 24 hours a day and don’t wake up.  But there are other potential scenarios as well.  I have two infections, both of which could kill me, and those could blossom out of control and kill me one day to the next, blindsided.  The doctors are doing everything they can to manage the infections and I feel my fevers are under control and that basically that’s not likely to be the way that I die. But who knows. Maybe I’ll be surprised.  Marcia will update everybody when the time comes.

So, dear friends, what we’ve known for a while is in fact the case.  I have a very limited time left in this marvelous form of stardust which I’ve been talking about over the past few months. I don’t feel any dread.  I want to assure you that I don’t feel fear about this.  It seems very petty to complain about the eventual dissipation of my stardust back into the stardust of the cosmos after having lived 72 years in this extraordinary form of existence that very few molecules in the entire universe get to experience.  Indeed, to even use the word experience with respect to my stardust is amazing.  Atoms don’t have experiences.  They’re just stuff.  That’s all I really am is stuff.  But stuff so complexly organized across several thresholds of stuff-complexity, that it’s able to reflect upon its stuff-ness and what an extraordinary thing it has been to be alive and aware that it’s alive and aware that it’s aware that it’s alive. And from that complexity comes the love and beauty and meaning that constitutes the life I’ve lived. And to top it off, I’m in this massively privileged corner of this human stuff that’s managed against all odds to not live a life of fear and suffering from the cruelties of our civilization, that has never felt the fear of hunger, the fear of bodily insecurity in my neighborhoods, that has had the resources to raise my wonderful family, my children, in an environment where I think they too have felt physical security and the basic things you need to flourish.  So there you have it.  I am among the most advantaged, privileged, call it what you will, stardust in this immensely enormous universe for 72 years.  And so it will end.  But I knew that, at least from age 6.  This is a few years earlier than I’d hoped, but no complaints.  No complaints.  And I suppose, to carry on this reverie a little bit longer, I suppose to top it all off, sometime in my late teens to early twenties, I decided to take advantage of this extraordinary privilege that I had, not to live a life of self-indulgence but to create meaning for myself and others by trying to make the world a better place.  The particular way in which I did this of course is historically bounded by the intellectual currents and turmoil of the late 60s and early 70s.  I don’t think that means it should be thought of as merely an effect of that historical moment. I think my dogged attempt to revitalize the Marxist tradition and make it more deeply relevant to social justice and social transformation today is grounded in a scientifically valid understanding of how the world actually works.  But without being embedded in a social milieu where those ideas were debated and linked in both sensible and misguided ways to social movements, I would never have been able to pursue this particular set of ideas.  But I was enabled, and it’s made for an incredibly meaningful and intellectually exciting personal life. So no complaints. I will die in a few weeks, fulfilled.  Not happy that I’m dying, but deeply happy with the life I’ve lived, and the life I’ve been able to share with all of you.

One final thought on this meandering theme: in November of 2015, I was hit broadside by a car while biking.  It would have taken very little change in what actually happened to turn this from a significant injury into a death, from one moment to the next I could be here and gone. People sometimes speculate on what’s the best way to die: suddenly or in your sleep, bang you’re dead; or drawn out over an extended period of time.  For me the answer is unequivocal: the death I’m having is the death I would choose.  but there’s one other little nuance of this way of dying that I didn’t really understand beforehand.  Often when people talk in a medical context about dying, when the context is the kind of death I’m dying, drawn out, people talk about the trade off between quality of life and extension of life.  Well, what I’ve come to realize is that when you’re really sick, when the pain of your illness takes over your life, or even when, as was the case last night I had uncontrollable and really hurtful coughing that kept me up most of the night, when you’re no longer in your body in a comfortable way, that’s not just a question of quality of life, that is a question of life. Five weeks of living the way I felt last night when I was coughing uncontrollably is not just some trade off with two weeks of living without it.  Five weeks of living like that is not living.  So I’ve told the doctors that from here on out, my priority really is comfort.  Not being drugged so that I’m loopy and just feeling physically comfortable, I want to be mentally comfortable too.  I want to connect and be able to continue writing this blog til the end.  But my priority is to be present.  And then let the length be what it is.  It will end soon, hopefully it will last as long as possible, but only in the context of being truly alive.