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
Thank you for keeping us informed of your journey. I’m pleased that you had the energy to write this. It reminds me, although on a much grander scale, of that sensation that one gets (or got back in the day) when the merry-go-round at the amusement park finally started to slow down. I can remember the disappointment, knowing that the ride was “over” or nearly so, and the ride would never be the same after that “moment.” The ride was not really over until it actually stopped, but it was not the same either because the best part of the ride (as I saw it) was over. I never really figured out how to enjoy the slowing down time, and, maybe you can show me the way.
Thank you for reading, and for commenting.
It’s probably more that we will figure this out together.
I hardly know the way, but I am learning.
Ah, Kathryn. Thanks for writing this and for telling the truth. About what it is like to have a chronic disease and live in uncertainty. About the inability of so many of us to be truly present to friends, family, acquaintances, strangers who are dying, suffering, or struggling. May your writing continue to inspire all of us and be the blessing that you are in this life. Peace!
Thank you for reading and for the wonderful conversation the other day.
More writing coming…. more good news makes even harder in some strange
way to take in all of this.
Wow, you have been on quite the journey. Janice and I truly wish we were there to enter this journey with you in any way we could. Your honesty, compassion, and grace have been great gifts to us over the years. We are hoping to be in the Seattle area next April. We would love to see you.
May you receive the courage and strength to journey on.
Harley and Janice
Dear Harley and Janice,
It seems that the Internet really does work. How wonderful to hear from you.
We’d love to see you here in April… including staying here with us here on the island
if you have time.
Yes… it has been quite a ride. Thanks be to God, I am doing better for now.
Mieke is here with our first grandchild… Charlotte.. 3 mo old. They live in London.
Luke and Nikki live in Oslo… ONly David is still in Seattle.
WE saw Tekla last Sunday at St. Augustine’s… and hope to hear her play
next Sunday are part of her music festival here on the island.
So.. send us an email or even call. We’d like to know how you are.
Kathryn & Gary