So... that’s it.  Spoke to the oncologist today, and we are officially out of things to try.

We can do more chemo to try to slow it down further, and right now it’s looking like we probably will, as they have a type of chemo that won’t cause further nerve damage.  But of course it will have other side effects, and it might cause other kinds of permanent damage, even fatal damage. We'll try it, and if it's too unbearable, we'll just stop. It's only meant to prolong my life at this point, and so if it makes my life too uncomfortable to be worth prolonging, we'll stop.

At this point the question is: at what point, and how, in the next year or two, will I go?  How many good days are left before then?

I wish I had complete control over my emotions, because even an hour or two, if I have such a short time left, is too long to feel despondent, afraid.  I want to enjoy every minute that’s left of my life.  But right now the fear is like a dark fog I can’t see or breathe in. 

What is the point of fearing death?  My fear won’t change it.  All of us die.  Very few of us get to do it without suffering of some kind, or regrets, or things left undone that we’d hoped to do.

I’ve done and experienced more than most.  I have so much to be grateful for.  

At the same time I don’t want to shame myself for my negative feelings.  They are nothing to rebuke myself for, but I do wish I could just accept them and then quickly pass through them, to the other side, the other side where I am grateful for what I can still do, for now.

Who gets to live forever?  No one.  We always have to say goodbye.  I believe (most of the time) that I will be moving on to a place where my soul will be free and full of knowledge, closer to its meaning and its creator.  I believe (most of the time) that all will be answered.  That I will exist in a state I’m not even able to conceive of at this point, a state that humans have only been able to use metaphors (pearly gates and winged harpists) to approximate.

What was that Baha’i scripture I used to love?

O

SON OF MY HANDMAID! Didst thou behold immortal sovereignty, thou wouldst strive to pass from this fleeting world. But to conceal the one from thee and to reveal the other is a mystery which none but the pure in heart can comprehend.

I’m not perfectly pure of heart, but I think I at least begin to comprehend it.  I believe that various scriptures tell us that living in this world would be unbearable if we knew what the higher realm is like.  I believe we are meant to serve our time here, to let the material world’s tribulations and sufferings shape our soul and develop its qualities.  I believe that eventually death frees that part of us which is eternal, the part that belongs to that greater realm, the part that makes us more than an animal, that causes us to reach out of ourselves, to strive to be more than we are. We are the only animal that does this, that wonders if it is good enough, if it could possibly be more, wonders if there are things beyond our comprehension.

Those of us who live like the other animals, who never reach, never strive, never try to glimpse the beauty that exceeds our comprehension -- those who content ourselves with rearranging the dust of this world – those are the ones whose fetal souls never grow, who never grow the “eyes” and “ears” necessary to fully partake in whatever comes next.

I believe with all my heart that there is a grand design to creation that we as humans simply don’t have the hardware or software to process.  I believe it is foolish human pride that tells some of us that nothing can exist that can't be measured by human means. I believe we have been given just enough of a mind to conceive of the possibility of things beyond our comprehension, so that we might strive toward these greater things and make ourselves better thereby.  But we are not meant to fully understand, because –

This is the part that’s hard to understand and explain. But strangely my experience with video games has given me a hint of it.  Every game has a purpose, and rules, challenges to overcome.  If you simply give people the final reward, it’s meaningless.  The point is in struggling, and getting there yourself.  We are changed by the journey through life, and that change cannot simply be given. We each have to live a life before our souls can be born into whatever is next.

Some of us do not accept the potential gift hidden within suffering and struggle, but that is the double edged sword of free will.  Some of us choose instead to let it make us worse, more bitter and selfish and cruel.  But we are all given the choice.  I have always chosen – well not always, but in my recent adult life – to take each moment of suffering and disappointment and anguish in my life and try to find a way to build something from it, learn something from it.

The things that have most advanced my soul have been gratitude, endurance of suffering, and the willingness to learn and change.  I pray that everyone I leave behind will be gifted with these things as well, so that they can join me in this mysterious quest, this reaching for a thing we are not allowed to see but can somehow deeply feel, in our best moments.  This thing that even the most intelligent and educated people once called God, before that word was tainted by televangelists and cruel politicians.

I know these thoughts are strange, heavy, ethereal, and may seem deluded. But these are the thoughts that ring truest to the deepest parts of me, that bring me closer to peace at times like this.

All the same, I know I will still have a few aftershocks over the next few days, moments of anxiety, fear, grief, despondency.  I must forgive myself these moments, because I am a flawed vessel.  I am still part animal: electricity and meat and chemicals.  But I need not be ashamed of this weakness, because it is part of my design.  This fragile soup that has carried my consciousness all these years is the vessel that was assigned to it, and I have to respect it and its flaws, because without it, my soul would have had no way to journey through this world.

So I needn’t be ashamed when I have these natural, animal, self-centered feelings. What else could we expect of a mere human? Today I heard medical science's final word, based on what they saw inside me and the lack of knowledge at this point in history to do anything further about it. We might reasonably expect that I have a year left to live. Anything beyond that is not impossible, but is unreasonable.

No one knows for sure, but that’s what’s expected.  A year or so.

To hear that, to love life as much as I do, to think back on how quickly the last year flew by, and to realize that in that amount of time I will cease to exist here – it’s devastating.  There is nothing like that, no truth that can hit harder.

Over the next few days it will hit me again and again, waves of icy water pummeling the deepest parts of my being. I can only hope, pray, ask, that it fade with time and leave me with only appreciation for each small sweet pleasure this world offers in my final days. I can hope that the next world will offer sweeter pleasures still, while still acknowledging that we can never be certain of that -- that we are not meant to be certain of that -- and so I must cherish the time left on the one world we know of for certain. I must use this time, however short, to do what I can to create light as well as bask in it.

I also hope, pray, ask, that my end be as dignified as possible, as clean and bearable as possible for those I leave behind: those who still must suffer onward in the uncertainty and half-blindness that the material world represents.

If I can, I will reach out to them from wherever I am, and help guide them, so that they can live even better lives than I have, and grow even more glorious, luminous souls than the one that I feel, in my best moments, burning in me.