A stranger tried to tell me who she once was. I took her rug and walked away.
Some years ago while picking up a freebie rug spotted on Facebook Marketplace, I met a woman who scared the living bejesus out of me. She wasn’t cackling wildly, waving a sharp (or blunt) object, or raving on about how the world was coming to an end—actually, that would’ve been me if I’d chosen to speak. Rather, she was a woman in her 70s sitting in a chair connected to an oxygen tank who said, “I haven’t always been like this. I used to love to swim.”
Her eyes, when she spoke those words, were pleading as if she were hoping I was a fairy godmother with a wand who might wave it and return her to that former version of herself. I froze mid-rug-hoist and nodded. I didn’t say, “That must be a challenge,” or step over, take her hand, and whisper, “I see you.” What I did was clutch the rug tighter, mutter something like “so sorry” and “thanks for this,” then flee.
It wasn’t that I was squeamish about aging and all the many changes that go with it. In that moment, my 96-year-old dad was sitting in the passenger seat of my car, and I’d been caring for him for a while at that point so I knew quite a bit about the wonders the body visits on us as the years tick up. What affected me were her eyes, more specifically, what she was transmitting with them. “Is this who I am now?” “How did this happen?” “I never thought…”
An Uninvited Guest
Five years later, my dad has passed and that woman is me. While I don’t have an oxygen tank, and hope to never need one, my body is speaking in ways that remind me of her. At times I look into my eyes and find them asking the same questions. She terrified me because I saw my possible future in her—specifically a loss of air. The lungs, those bellows of life, have always been my Achilles heel. The summer after the world was meant to come to a Y2K end, I had a lobe removed from my right lung due to a tumor, which, while scary, was benign and not an ongoing cancer.
After the surgery, the doctor shrugged, “Nothing to write home about. We’ll see you in six months for a follow-up on how it’s healing,” and the nurse told me she’d had patients who’d gone on to run marathons after the same operation. I decided I would be just as cavalier and experience this as a mere blip in my life. I’d take up running like all those other lobectomy folks. Then I laughed because I’d never been interested in athletics of any sort, being more of a curl-up-with-a-book kind of gal.
Yet five NYC marathons, hundreds of walking and biking miles, and a million laps in the YMCA pool later, I figured I’d gotten this body thing down, as if working my physical self into its best shape would allow me to avoid all the inner bits of emotional history that had surfaced with the surgery.
Don’t get me wrong, it’s amazing to feel the strength of what you can do, and I wouldn’t take back any of the miles for all the potted gold in the universe. But what I had missed was that my lungs weren’t a one-and-done situation to be cured with physicality alone.
Asthma had constricted me as a kid during my parents’ divorce. An only child who reveled in making up stories, I didn’t get the help I needed during my first serious breathing crisis because my mom didn’t believe I was in trouble, thinking instead that I was being dramatic. I was eventually taken to the hospital, but the emotional fallout was complicated, scary, and confusing. I began to think the things I needed might be too much, that perhaps my feelings were overreactions and the crisis was something I’d created, so I began hiding those needs away. As an adult, my asthma subsided and I stuffed the childhood terrors into a box, put the box in a closet. After the surgery, it didn’t occur to revisit that storage space.
Taking a Deep Breath
Within the past year, a cough and lung congestion that wouldn’t go away was misdiagnosed (a couple of times), and I heard my mother’s voice in my head. Was I imagining this malady? Was it more a matter of mind over matter? If I thought positively would all the breathing trouble and exhaustion disappear?
Then an infectious disease doctor found the cause: nontuberculous mycobacteria (NTM) lung disease caused by Mycobacterium avium complex (MAC). To say I was relieved is an understatement, not just because now my illness had a name and, with it, a map toward excavation, but also because I wasn’t making this illness up, hadn’t been just a hysterical woman (girl). It was also a wake-up call to sort through the voices in my head and recognize that the most critical were planted when I was too young to know any better. Those have been there the longest and are the loudest. Just underneath them are whispers telling me I’m worth listening to and believing in.
A Different Kind of Strength
It will take a lot of dedicated and long-term attention to remove this bacteria from my lungs. I was recently told I also have osteoporosis in my lower back, which can be associated with NTM. Apparently the disease is a wily trickster that may mess with the body’s ability to metabolize vitamin D, so that will require some pharmaceutical intervention along with the lung drugs.
Rather than situate myself outside of the moment, I’m needing to take it all in and really look at and listen to the life changes that will be required from now on. I won’t run any more marathons, although that ship sailed years ago; biking and walking are still available at a slower pace; but the thing that makes my heart hurt more than I have words for is having to give up swimming at my local indoor pool. As my doctor explained, my lungs are susceptible to reinfection from NTM bacteria, which is chlorine-resistant and lives in the steam and on the surface of indoor pools waiting to slip in and wreak more havoc as I’m working hard to squelch the invaders that are already there.
I need to grieve properly for that and acknowledge my fragility. Accept that it’s difficult to sit with discomfort, but it’s time. There’s no way to outrun, outwalk, outswim, or outthink my story. The moment is here to take my hand, look into my eyes, and say, “I see you.” Something I wasn’t able to do years ago with that lovely lady—whose rug I held instead of her.