In the darkness the trees are full of starlight (henwy) wrote,
In the darkness the trees are full of starlight

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Cheer up, the worst is yet to come

Being alone with fear can rapidly turn into panic. Being alone with frustration can rapidly turn into anger. Being alone with disappointment can rapid turn into discouragement and, even worse, despair.
-Mark Goulston

For years now, I've taken my life one day at a time. It was the only way I could find to live where the path didn't lead to grief, madness, or despair. I built a fire and into the flames I tossed my dreams, expectations, the future, and most importantly, hope. I realized pretty early on that hope was the most insidious and even deadly emotion of them all. Hope kills. If you keep hoping for something better, how can you accept reality as it is? 'Leper, outcast, unclean.' Hope is a razor blade disguised as flowers and sunshine, an illusion that can cut deeper than any knife and in the end, almost always does.

This willful tunnel vision, keeping my gaze on my feet, instead of on the path ahead has seen me through some dark times. I try to never think about tomorrow or compare my life to what was, or what might have been. Because of that those times where I do surface can often be jarring. There have been times where I've been forced to recognize just how bad things had gotten, whether due to the pain or wounds or simply the interminable pressure which grinds at you each day, wearing away your resolve until you aren't sure it wouldn't be a comfort just to let it all go. Now, once again I've raised my head to look around and what I have to come to grips with is that I have never been as good as I've been now, not for 20 years. I've lost track of how many surgeries there were by now....though I know it was somewhere between a half dozen and ten. There were countless days of blood and torn flesh, unending pain and weakness, pills which brought nausea and through it all, a certainty that there was no cure in sight. I remember a time driving to gencon where I could barely haul myself to my feet at the gas station only to have blood streaming down my legs to catch in my sandals. I remember trips out with friends or family and I could barely manage to walk more than 20 or 30 feet before the pain and exhaustion would have me leaning on a trash can or bench to catch my breath. And of course, woven through all of it the fear of stigma and the loneliness. The fear of discovery that someone would find my secret and the disgust that would inevitably come with it.

I'm not sure all that much has changed on an emotional level. I'm sure that will take time if it ever comes, but these days I can move without chronic pain and I haven't had to take any opiates in over half a year. For the first time in decades, I'm not exhausted by the most basic of activity and can walk or run or even jump as much as any lardass. Each day I'm not preoccupied with wound care, applying salves and bandages, trying my best to keep disaster at bay, all the while trying my best to keep anyone else from noticing. In short, it's almost as if I have somewhat of a normal life back again, and I still find it almost surreal.

Perhaps it was only fitting then that the kidney failure came along when it did. Just as well that I didn't have too much time to recognize and adjust to how things were before the next fubar came down the line. It's simply another in a long line of things that I've had to take one day at a time and if nothing else, that's something I've become accustomed to over the years. I had my blood drawn at the nephrologist today and this creatinine result will probably be very telling about just what the trajectory the kidney failure will take. My creatinine had been as high as 3.9 two months ago but had actually dropped to 3.3 last month. We'll see if the numbers hold or have started to climb again. They had been going up a point a month before this previous dip and once it hits 10 it's all over. I'm still inclined to not pursue dialysis so we'll see how long I can stretch this out and whether there's any chance things will stablize. Frankly, with the waiting list at 5-7 years, I'm seriously not holding my breath here, but you never know.
Tags: chronic pain, deep thoughts, hidradenitis, kidney faiure

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