In the world of modern/ high-tech medicine with its amazing machines, procedures, and wonder drugs it feels as though the goal is above all returning to “normal”; to that condition of life that was mine BEFORE so much was shut down or turned around.       There are very few public conversations about “not returning to normal”, and little consideration of what happens when such a return is impossible.

It is not as though all of “that” is over and done with. “That” would be cardiac amyloidosis, a rather abrupt end to my teaching career of 20+ years, organ playing, and travel and work on the Doctrine of Discovery for the Episcopal Church, chopped off by a year of chemo therapy in a life now marked more by medical appointments, pills, procedures and practices than anything else. No, “that” is not over and is not going to come to a conclusion until I do.

But for a little while at least, my head is just high enough above the waves of this sea of dis-ease that I have what is surely a rare and temporary opportunity to look back and try to figure out what it means, and what I would carry forward with me for the rest of my days. (However many or few they may be.)

I know that I am not “better” as a person with all that has happened in the past two years.. At least I don’t see that. Just when I think this has some how allowed me to see something I did not see before, and that that seeing is doing something to transform me, I fall into some stupid, small-minded space that has nothing trans -formative about it at all.  I am ashamed. After all of this…

And if I am at all honest, I have to admit that what I have been through, compared with what many people with serious illnesses experience, has been much more a kind of suffering light. (Not that my response to the experience was light; it was not!) My chemo was at first monthly injections for which I did need to travel into town.  Now it is four days of pills taken at home days 1-4 of a 28 day cycle. In both cases the worst problems have been great tiredness, feeling inebriated, and more recently rather distressing problems of elimination. But, not at all what one hears many people go through with horrible nausea, hair loss, etc…..

This year has allowed a number of glimpses into things I could not otherwise possibly see or have any idea of. And so, as very frustrating as much of this has been, I have a sense of “privilege” at having seen what I have and I am VERY leery of wasting that.

Parts of me feel as though I should cease to speak.That I should simply look out upon what is left, marvel at that in silence and awe.

After all of this, how dare I say anything except, Alleluia? I am alive today. I did not die last summer, or in January. I’ve looked into some very deep and overwhelmingly sad places, been opened up even a bit toward the suffering that I now share with other people whose bodies are not “whole.”  I know how it feels to be taken over by waves of resentment at seeing someone who can still walk or even run easily down the street…or even worse, ride a bike, dance, or do that hike at Ebey Prairie.

But I don’t even want to go back where I came from. I don’t want to forget how terrifying, undoing, world re-arranging, humbling, …

I don’t want to forget some of the incredibly stupid things that people have said to me over the past year and how much I want NOT to do that to others

Some who ought to know a lot better;  with many years of experience in dealing with such matters, upon hearing my diagnosis said…”You’re kidding!”,

another said… “That sucks.”

Telling my PCP how I used to walk 6 miles from my house across town…                                  said “Poor baby!” and on and on

Others seem to miss the part about chronic disease NOT going away;                                           and yet they say, “Get well soon!

The responses that do “help”, in that they seem to convey to me that they in fact DO            have some idea just how terrifying and life-dismanteling this is… are often mostly silent, non-verbal expressions of compassion and care, rather than thinly veiled attempts to shield others from their own self-concern.

So, now what? Where and how do I go now?

I know that the humiliation, fear, etc… all of that will come back again. I know that. But at least now it is not as though it is something unfamiliar, unexpected. But how not to waste my suffering light?

How do I do that? And why? Not another newly “saved” one running around saying things that make no sense to anyone else. I don’t think other people can “get it.” So, why even try to “give it” to them?

But I am not the same…and yet I don’t yet know how/ who I am now. That is not clear.

Still floating in these tears                                                                                                                that speak more clearly                                                                                                                           than dis-abled words