Yesterday I learned that my epiglottis is not functioning properly. That sounds like the opening line to a bad joke, doesn’t it? “Epiglottis” is such a funny-sounding word. It has kind of a serious function though, and apparently–thankfully–I’m good at compensating for its shortcomings. “Compensating,” also the crux of many a punchline. I wish I were finding it easier to laugh.
We are rounding on to a full-year of pandemic isolation, and we’re all feeling the fatigue and frustration. For me the pandemic has been co-extant with an intense treatment regimen, and lately it seems like I can’t catch a break. I’m loathe to create a metaphor that demonizes felines in any way, but since I speak the language of cats fluently, the image that comes to mind is of me, clad in a sweater, and each day Kitty comes with claw outstretched to pluck and pick loose still another thread, then another, until eventually the whole garment begins to unravel.
My malfunctioning epiglottis is the latest casualty. It’s likely a long-term side effect of the radiation treatment I had two years ago, during my second recurrence. Yesterday I underwent a swallowing study (you haven’t lived until you’ve chewed a spoonful of cold beef stew, mixed with a dollop of barium, and swallowed it on camera) that showed the strap muscles in my neck are weak. I’ll need speech therapy and a set of exercises to strengthen them and get my epiglottis moving again. I was disheartened to learn I had yet another issue that needed addressing; I’d thought the swallowing study was meant to confirm and illuminate the issues with my paralyzed vocal cord. Surprise!
There’s a popular inspirational meme/poster that circulates titled “What Cancer Cannot Do.” The wording varies slightly, depending on the source, but all versions iterate the limitations of cancer, noting that it cannot cripple love, shatter hope, corrode faith, destroy peace, kill friendship, suppress memories, silence courage, invade the soul, steal eternal life, or conquer the spirit.
I’ve gotta confess, I have increasingly mixed feelings about this message.
Attitude may well be half the battle when it comes to fighting cancer. But that’s just it: attitude is half the battle. Battles are hard. And it’s something less than easy to stay on a steady, even keel mentally and emotionally when your body is in the fight of its life, especially when it keeps throwing you yet another left hook. Or a recalcitrant epiglottis. It’s unrealistic to expect of myself, yet I often feel like I’m letting people down if I don’t “stay positive.” Someone complimented me recently for my lack of self-pity, which left me wondering where the line is between descending into said self-pity and just being transparent about the realities of this disease. I’ve no desire to wallow, but acting as if there’s no muck to slog through would be dishonest.
Do I sound cranky? I feel cranky. I’m weary, and I’ve been struggling. So when I read about all the things cancer cannot do, it makes me twitchy. Maybe cancer cannot cripple love, but it can sure wreck your libido. It might not destroy your peace of mind, but knowing some of your own cells mutated and tried to kill you certainly disrupts it. And anyone who’s undergone chemotherapy can tell you that cancer may not suppress memories, but the treatment robs you of your ability to recall events and words most effectively.
Maybe it’s my inner English teacher, the wordsmith in me who demands precision of language, who trips over the “cannot.” If cancer has not conquered my spirit, it isn’t because it can’t. Lately, depression and anxiety have interrupted my days as much as the physical symptoms and side effects. If my spirit remains unconquered, it’s because I fight, hard, on that front, too. I talk regularly to a counselor, and I take medicine to help me manage the emotional fallout.
The meme borders on reinforcing toxic positivity, a form of “staying positive” that denies another’s grief or pain, that seeks to leap-frog over losses to the lessons those losses may have wrought. According to Susan David, author of Emotional Agility, “Toxic positivity is forced, false positivity. It may sound innocuous on the surface, but when you share something difficult with someone, and they insist that you turn it into a positive, what they’re really saying is, My comfort is more important than your reality.” You can only see the silver lining if you first acknowledge the cloud. And sometimes the fog that surrounds you is thick.
Cancer, and its treatment, does damage, and I grieve my losses. A partial list, in no particular order: all of my hairs, including eyelashes and brows, and all of their functions, including the facial expressiveness eyebrows provide; my voice, and thus my ability to sing along with my favorite songs; my ability to swallow with ease and thus my enjoyment of food; the strength and mobility in my left arm and dexterity in my left hand; the ability to fit into some favorite clothes due to the swelling in my upper arm; my natural breasts; all sensation in my chest; my ability to recall words; wide swaths of memory; executive functioning skills (good-bye, multi-tasking, and hello, increased difficulty making decisions); my stamina, and thus my ability to hike or run; my dignity on occasion (drippy nose and loud belches will do that for you); the ability to wear my long-awaited wedding ring (due to swelling) or most any other jewelry except earrings comfortably; general comfort and confidence in my body; easy imaginings of a long-term future for myself, my marriage, and my dreams.
There have of course been lessons, and I acknowledge those, too. I’ve definitely no shortage of writing material, though I will always hold that I had plenty BC (Before Cancer). A changed perspective and sense of priorities, in terms of what deserves my energy and time. Patience. A strong desire to be a positive force in others’ lives, whether that means telling my loved ones I care, giving more compliments, sending someone a note or gift to brighten their day, or just trying to be the person about whom the doctor’s scheduler goes home and says to their partner, “I spoke to the nicest woman today.” Keeping petty grievances to myself, and speaking up for justice. Always seeking the beauty. Letting the small stuff go. Increased awareness of my own resilience. Understanding just how much I am loved, and how lucky I am to have the family and friendships I do. Recognition that way more people are going through hard stuff than most of us would ever imagine. Kindness always matters.
I would like to think I didn’t need to face a serious illness to learn these lessons, but it certainly has had a way of highlighting them. I value what I’ve learned, but I also have to be allowed to mourn my losses. They are real, and they hurt.
There will be losses, and there will be lessons. And I thank you, readers, for the third “L,” an act far more meaningful than the platitudes of any inspirational meme: listening.