Ellen's Last Post: Resist Reframing
Hello. For those who don't know me, my name is Meg, and I am Ellen & Joe's eldest child.
One month ago, on April 24th, we lost my beloved mom to a 25+ year battle with Scleroderma and assorted other autoimmune conditions. As she was preparing for the end of her life, she asked me to publish one final blog post on her behalf after she was gone. It is called "Resist Reframing" and it speaks to her experience dealing with longterm illness and how she chose to cope. She hoped that anyone who is struggling with something similar (or even something different) might take comfort in knowing they are understood.
If you knew my mom, you know how difficult it is to describe her magic...words mostly fail. Still, I tried my best to explain it in her obituary -- you're welcome to give it a read. While writing it I was reminded of one of her most magical characteristics: the way she memorialized her life and our family in stories, artifacts, and writings, like this blog. I urge you revisit it often to hear from her in her own words, especially when you need a reminder that she's not far away.
In this way and so many others, Mom is the model for how to leave this earth with grace, dignity and love. So now it is our turn -- let's learn from her as we figure out how to stay behind.
Enjoy "Resist Reframing", by Ellen Nieslanik [March 26, 2023] <3
At least….. if only….. but now, you can…”
These have all become red flag warnings for me of people reframing my truth — which has been the hardest part of coping with long term illness. The only way I cope is to live inside my old frame, the one of truth. For that reason I’ve jotted down a few thoughts that might help others facing long term decline while living in a culture that often reframes difficult things.
I long to frame the world (at least mine) in a truth where….
There is no expectation or silver lining, no grand meaning or underlying punishment or scheme for illness or pain;
There’s no pity (or Cocker Spaniel eyes);
There are no thoughts that prayers, vitamins or self help programs can fix what ails, nor do people think illness and strife is punishment for prior acts;
I can walk right out to the edge, and face the end of options, AND find a way to live there with joy in tandem with pain and gratitude;
I can find delight even in new limitations and live fully in spite of those limits every day, until I don’t;
I am allowed to grieve the loss of ability and agency along the way;
It’s healthy to laugh about my losses as long as I am leading the self-deprecating line of humor, and I can stop the jokes when it’s no longer amusing to me;
My daily blessing and offering to the world can be as small as a kind word, a muffin, a smile or a soft breath;
The days where I have no offering, the world gives back to me with a sunset, an agate, or Charlotte’s kiss and that’s enough;
My worth isn’t measured by tasks completed, in fact it isn’t measured at all;
I am not expected to get better, there is no pink pill, but in spite of this I laugh (really hard), I love and I cry every day — both from happiness and pain;
There is reciprocity, with every inhale an exhale, with every tear a laugh, with every wince of pain, a moment of joy;
I continue to play like a child, and dig in the mud for clams or just to dig;
My heart is and will always be a mother, a partner, a farmer and a shepherd, even though my flock has changed;
Simultaneously this life is exceedingly beautiful and damn hard.
Resist the temptation to reframe because in the end only truth and love remain.
I AM A CHILD OF GOD - I LOVE AND I AM LOVED ❤️
