The Burden

I'm tired. So many of my thoughts these days range to the negative, to the failure of my life, to the illness riddled depths to which I have fallen. I must take great care these days when I say, or write, these thoughts which dominate my reflections, which overshadow my ruminations. It is nearly impossible to see the world through sunny ways while I live these deeply darkened days.

I am distraught. My ability to sustain a positive thought or view is near worn away to a nub. Here I sit with the second half of my Dad's aphorism. How can it get worse, or more importantly, more realistically, how will it get worse? I know for a fact that it will. I am no longer Sisyphus. Instead I am on a long, slow slide which ends at the river Styx.

So what have I got to live for? What keeps my going against such great distress? Well, I, like my Dad again, want to see what happens tomorrow. Oddly enough I still live with that ghost of hope, that idea that something good might happen for me, that tomorrow, or even today, might include something which lifts this cloud of grey from me. I live in the constant hope of a better tomorrow, as insane as that may be with a disease like ALS.

So why do I continue to live with such unimaginable challenge? Unfortunately the only option is to die from this challenge. I have so many things in my life which make it easier to live, which lift the burden from me. I have things mechanical, things electronic. I have people, the most important thing to have, who care about me, who will help me. While this is an incredibly lonely journey, I cannot say that I have ever been alone on this journey, not from the first moment of diagnosis even up to this day.

I am loved. This matters. Those who love me do the things which keep me going, right from the smallest bit of help to the substantial. This is, perhaps, the most important outcome from ALS, to have learned who loves me, how far they will  go to care for me. Even those who, like me, have so so little are still there, pitching in, helping me carry the load. The burden may be upon my shoulders, but it is easy to carry when shared so much.