One year ago today, my wife, my baby, my spicy Picante, commenced Sparkling On into her next, post-earthly adventure. She had been dealing with stage 4 colorectal cancer for over four years by this point. which, for reference, is the same amount of time it takes in America to hold the office of President, earn a bachelor's degree, or serve in the Marine Corps.
In the world of her type and staging of cancer, four years can be a long fucking time.
I want to thank all of you who followed Kara as she logged exactly four-hundred blog posts throughout her self-empowering journey in the face of advanced illness. All of you who commented on her blog, encouraged her on her socials, raised funds for her, took her to chemo or surgery, gave her food, gift cards, or other blessings, and cheered on her efforts to create a "look," if you will, for stage 4 cancer that reflected her imagination and youthful enthusiasm in a society that marginalizes and even shames the so-called terminally ill.
I also want to thank those of you who kept up with her blog since I took it upon myself to continue what she began. From the raw, early series on her decline last summer to the more recent thoughts on death acceptance and health and illness communication, the writings I've posted here have been an attempt to examine our adventures from the caregiver's viewpoint and extend them into the context of, not an aftermath, but a new beginning.
My wife wanted to show the realities of cancer, challenge the conversation around it, and become a self-made brand ambassador for cancer patients facing an incurable diagnosis. Radical is not just for those who go into remission--it is believing in yourself and recruiting others to believe in you, no matter how impossible your goals may seem to the medical establishment or to the world at large. How does this mindset--and the willingness to back it up--interact with the challenges of bereavement? I don't know, but by continuing my relationship with Kara in my heart and in public spaces like this, I hope to find out more. And I hope that what unfolds may be of inspiration or support to others, too.
As a side note, I have used the word "radical" to reclaim it from the rhetoric of "winning" against cancer. But that is not to elevate cancer patients who share their experiences above those who prefer to keep them private. Inner strength comes in many forms.
As I see it, one of the greatest tests of the terminal cancer patient (how I loathe that term, but our language is so interwoven with medical framing) is navigating illness within a culture that views living longer as living better. That celebrates the treatable and stigmatizes the incurable. Kara, too, struggled with the pressures of such thinking, to the point that she blamed herself for all her health crises toward the end. And that is just wrong. No one should ever have to see themselves at fault because of a disconnect in mainstream thought between the medical view of disease treatment and the reality that we will all die of something at some point because that is how the universe works.
If there is one message I would like to leave with readers, particularly those facing a dire situation, it is this: "Stop thinking you could have avoided your problem if you had turned left instead of right. Stop thinking you did something wrong. Stop thinking you are wrong. Work on this, and I will, too." Or, as Kara might say, "pinky swear."
To close this post, below is a conversation I had with Kara a few days before she Sparkled On. It is the kind of thing we all need to hear on occasion.
Here's to more adventures in the Sparkleverse.
Until next time.
--Charles Austin Muir
To view the video, hit refresh once or twice if the embed says "Video Unavailable" or if anything looks odd. For subtitles, click the CC button in the lower righthand corner. Alternatively, you can click the link below.
I miss her.