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Letters From Cancerland: Still
By: April Nelson; Published: September 10, 2016 @ 3:48 pm | Comments Disabled
I have been silent for a couple of months, dealing with sea changes to my treatment regimen. These changes have thrown some major stumbling blocks into my life, and I am not yet ready to write about that increasingly touchy topic.
Fortunately, an intriguing and intense conversation with my good friend and sister-in-law Margaret provided me with a conundrum to puzzle over and this month’s column topic to boot.
I don’t have any answers, but readers might.
Margaret and I were walking and talking, as we love to do, when she asked me some questions about how much more impact multiple myeloma has had on my daily life and activities since we last compared notes. You know, general quality-of-life type issues.
I was puffing up a slight incline at the time. A longtime rigorous walker, I was huffing away because one of the newest issues is that I am starting to show signs of probable heart damage due to a combination of treatment and disease.
“Well, this is one,” I said, slowing a bit to catch my breath. “Walking is harder, but I am still walking.”
I then mused out loud in answer to the question. “I stepped off of Civil Service Commission and that was hard to give up. I had to, though, because it just took too much out of me. But I am still working.”
Pause.
“I am still volunteering at Legal Clinic. I am still writing, still baking …”
This is where Margaret interjected, objecting to my use of the word “still.”
What?
Margaret thought “still” was defeatist. It sounded of loss and irreversible change. “Well, I lost all these things (walking easily, serving on the Commission, blah blah blah), but look at what I still can do.” She thought that sounded as if I was conceding that eventually those pleasures (walking, Legal Clinic, work) would also disappear.
Well, dang, multiple myeloma is a chronic, terminal disease. The chances are excellent that eventually all of the pleasures in my life will come to an end.
Margaret retorted that she knew that. All the same, she thought using the word “still” was a negative choice.
I objected. To me, “still” is a benchmark, a bar I am still (that word again!) able to achieve. Okay, the bar may be getting lower in terms of my quality of life, but darn it, there is still a bar.
That discussion took place back in mid-July. A lot of water has passed under the bridge since then: the ongoing medical issues, the problematic treatment regimen, a lengthy driving vacation in early August that on the one hand was wonderful and on the other hand showed me that my days of lengthy vacations, driving or otherwise, are probably coming to an end (but I will still take vacations), the daily press of home and work and volunteering. And baking. Oh, and writing and reading.
And I am still mulling over the discussion.
Part of having multiple myeloma is coming to terms with it being progressive. I am not the person I was when I was diagnosed twelve years ago, I am not the person I was six years ago (halfway between now and then), I am not even the person I was twelve months ago. That is the reality of myeloma and the impact of treatment and disease on my body, my emotions, and my daily life.
But, and this is a reality of life and not just disease, I was not a static person before I was diagnosed. At 60, I am not who I was at 48. At 48, I was not who I was at 35. Or 25.
Or, God forbid, 15.
But I am still me.
I collect quotes, and this one, attributed to seventeenth-century poet Mizuta Masahide, is ricocheting around my mind as I write: "Since my house burned down, I now own a better view of the rising moon."
My house burnt to the ground. There is still a moon. I am still doing many of the things I want to do.
And I am still here.
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here [1].
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
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