I have leukemia, so what does that make me? Am I a leukemia “patient”? Or a leukemia “victim”? Or a leukemia “survivor”? Or am I just a dude with leukemia -- i.e., a person, one of whose qualities, but by no means the whole person, is an unwelcome compulsion to create a vast amount of mutant B cells?
As people with CLL, we are often pigeonholed by society’s stereotypes and expectations about cancer. The media reflexively uses various terms, without thinking about them much, and we have all encountered friends, family, and coworkers who see us as something different than what we were before we were diagnosed.
There is no doubt that the diagnosis of a life-threatening illness can change us, sometimes even for the better. But people who aren’t walking in our shoes may have a tendency to play fast and loose with labels, slapping them on us when they don’t always fit. There is a danger in mindlessly accepting them, in subtly becoming what others expect us to be.
So what should we call ourselves?
I don’t really like the description “patient.” There is a certain loss of individuality in that appellation, a cow-like aspect that implies being a member of a rather passive herd of unfortunates managed by personnel bustling around in white coats. It makes me a set piece on the medical stage, one player in a long row of sufferers tethered to IV poles, and it brings with it all the notions of powerlessness that one ascribes to such an image: less power over disease, and less of a voice in the “doctor-patient” relationship. Medical care is part of the CLL experience, but not everything about it (though I certainly prefer “patient” to “medical consumer”).
Despite my reservations, “patient” is not inaccurate, but it is just one of the hats we wear. And perhaps we need to dust it off and change the way “patient” is perceived, make a transition in public perception from “poor things” to “hell-raisers." (Movie trailer for Bone Marrow Biopsy II: Aspirate This!: "Their white cells make them see red!”)
It should also be noted that the word "patient" does have an unintended meaning: With CLL, one must learn to be patient. That’s not the usage intended, though.
“Victim” is bad on so many levels. You can be a victim of anything, if you choose to see life that way. As a child, I was a victim of candy manufacturers, consumption of whose products required multiple fillings in my teeth. When I was 16, I was the victim of not having a car. You get the idea –- “victim” is overused, which tends to dilute its meaning for those who are genuine victims, such as babies killed by bombs. The decline of the human body is part of living -- I have been heading toward destruction since I left my mother’s womb one autumn day in 1956 -- and while this is an unfortunate progression, I do not see myself as a victim of the natural order of things. Yeah, I feel sorry for myself sometimes. But I have the power to fight back. Victimhood is not empowering, and I have always found it to be a most unpleasant way of getting by.
“Survivor”? Sometimes you see a CLL person who is rather proud of this title, and I can see why. Some people go through a hell of a lot, they surprise themselves, they prove something to themselves, and perhaps to others. I take nothing away from their accomplishments and they deserve to wear the title proudly. For some people, those with aggressive disease or other complications, CLL is a hard struggle from the start.
But, taking a broader view, we are all survivors until we die, whether we have leukemia or not. To me, unless I have truly earned my stripes, been to the edge and back, it is not right to adopt it as a label, because survival is just part of the act of living. Anyone alive is a survivor, really. And a philosopher I know suggests to me that since CLL is chronic, do we really survive it? Or do we survive along with it?
Speaking of “Survivor,” one cannot help but think of the CBS TV reality show of the same name. The motto of the show, in which contestants are pitted against one another in a remote place, usually a tropical island, is “Outwit. Outplay. Outlast.” In a strange way, that just about sums up the battle many of us have with CLL. A few false moves, a streak of bad luck, and you can get voted off the island, which is not a pleasant prospect. Play it right, choose treatment wisely, get a little lucky, and you just might make it to the end. There’s no million dollar prize, but life itself is infinitely more valuable.
That leaves us with “dude.” I like the blend of serious and casual that comes with “leukemia dude.” It is unexpected; it is impossible to conjure up a stereotype of how a leukemia dude looks or acts, and it breaks through the fog of negativity that others can mentally impose on those with our condition. If “dude” implies a somewhat looser, going-with-the-flow approach to life, even someone who’s cool, then maybe we need to add that element to the picture that others have of us.
Of course, you can just be a little less trendy and say “person.” That is what I still feel that I am, something whole and unbent, not a stereotype or a role or a sound bite. I have hazel eyes and a brown cat and a silver car and some extra white cells.
The phrase “CLL’er” has been used on occasion. It’s a bit flip, perhaps, but rather neutral. I don’t mind it. Taking a page from ethnic descriptions, there’s also “Leukemic-American,” or “Leukemic-Canadian,” and so on. And at times I feel like one of the “Leukemically Challenged.”
Though I’m not sure quite what to call myself, I do believe in the power of language. We are what we tell ourselves we are. Let us not forget that we are whole, made up of many things, and that CLL may be part of us but it is not everything about us.
5 Years Since I started on Ibrutinib for my CLL (chronic lymphocytic leukemia) in a Phase 1 Clinical Trial at Ohio State - May 5, 2017 marked 5 years since I swallowed my first 3 capsules of PCI-32765, now better known as ibrutinib or Imbruvica. I still take 3 battleship grey ca...
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