First, someone said it to me, and I nodded. It was a friend, a good friend, who had just learned of the diagnosis. He told me the words softly, as if he were setting something fragile down. “This is your new normal.” I heard those words again from a support group leader a few weeks later. I also saw them printed in a pamphlet with a pale blue cover. Every time, I nodded because nodding felt much easier than disagreeing with friends who were trying to help. But each time, something inside me resisted. I couldn’t name it then. I can name it now. What I felt was a small, quiet resistance.
Before I let the phrase go completely, and I want to be kind to it, let me give you a better understanding of its intent. It’s trying to help. It wants to turn something foreign and frightening into something familiar. It wants to fit the unfamiliar into the ordinary so you can stand beneath its weight. It offers permission. Permission to stop waiting for your old life to return. Permission to stop mourning, or at least to mourn less. That is truly benevolent. The people who told me those words didn’t act carelessly. They wanted me to have firm ground, and “normal” seemed like firm ground. I understand what they were trying to offer me. Still, I can’t accept it.
That is a Tuesday. I wake before the alarm because the medicine decided when I would wake that day. My pillbox sits on the counter, seven little doors, and I open the one that represents today. Some Tuesdays, I look at it a little longer than I should. Then there is the drive to the lab, the blood draw, and the same nurse asking the same questions while she tries to find my vein. Then I go home and spend half an hour on hold with the pharmacy, listening to the same music play over and over while a prerecorded message tells me my call is important.
Before lunchtime, my body simply ceases to function. The nap isn’t something I choose. It’s something I need. Eventually, I reflect on all the things I once did without a second thought: carrying every grocery bag in one trip, staying up until the last inning of a baseball game, agreeing to eat at someone’s house two weeks from now without wondering what my white blood cell count will be that day. Simple things. Familiar things. Some are no longer available. Others come with limits.
What happened yesterday, or rather, what is happening today, is not “the new normal.” It is happening, and I am experiencing it. But it isn’t “the new normal,” and calling it that asks me to stop noticing it. That is where my resistance takes hold. The term doesn’t define my Tuesday. It quietly erases it. It suggests that the pillbox, the lab, and the music playing on hold will become background noise that a reasonable person no longer notices. I notice these things, and I plan to keep noticing them.
What might I use instead of “new normal”? I’ve tried several terms myself. “The current arrangement” has a truthful, temporary quality. It sounds like a lease I signed without meaning to, but currently agree to honor. “The life I have” seems simpler and more accurate. It describes the reality of my life without suggesting that I asked for it.
Finally, there is one word I return to most often: alongside.
I live alongside this disease. Not in spite of it. Not by pretending it doesn’t exist. Alongside it. This word leaves room for two truths to exist at the same time. The cancer exists, and so do I. Fatigue exists, and so does the sunlight shining through the window onto my kitchen table. None of this is typical or commonplace, yet all of it belongs to my life.
More important than the people handing out pamphlets may realize, language shapes how we understand our lives and experiences. The words we accept influence the eyes through which we begin to see ourselves. If I accept “new normal” without question, I may eventually start to see my days as colorless. I may lose sight of myself within them. Choosing a truer term helps me remain aware of my own existence inside those days. That awareness is a form of self-respect, a way of remembering that I am still here.
I won’t lecture the next friend who uses that term with me. I will thank them because I know they’re speaking from kindness. Then I will calmly explain that I use another term to describe my experience. I will keep noticing and acknowledging my surroundings: the pill organizer, the vein, the nap. I will keep declining that phrase without anger, the way I might decline a jacket that doesn’t fit.
I will describe my life with my own vocabulary because my vocabulary is the only one that can tell the truth about my life.
Not “the new.” Not “normal.”
Simply, the life I am living alongside.
