Chronic illness isn't a weed from one's imagination
Longing for gardeners in the medical landscape 🪴
I’m writing to you from the back porch, which happens to be one of my favorite places these days. Especially now, in perfect 77° weather. If you were sitting in the rocking chair next to me (I’d give you the non-creaky one), you’d be dazzled by the blue and purple mophead hydrangeas nearby. They’ve just passed their peak, but their petals still look as if God bumped their saturation all the way up.
Our little herb and veggie garden is mostly fairing well, though I haven’t had the heart to shoo the chipmunks tumbling around in there. I learned about bolting last week,1 so now I understand why the cilantro appeared to take on a second life, turning flowery and bitter. Our first jalapeño is greeting the earth at roughly half the size of my pinky. How cute! Ever since I noticed its little green face earlier this week, I’ve been running outside barefooted to check on its progress. We’ve also been slipping sweet basil into our sammies and spaghetti dinners and slivering Thai basil over our instant noodles. Yum.
This backyard is my family’s sanctuary and holds different experiences for the three of us. I have gone out here grumpy and sad and pouting over how unfair life can be, but not even those feelings have kept me from noticing something special.2 Sometimes if I feel particularly lonely or misunderstood, I fall into my hammock and pretend the hundreds of leaves above me are stars. Together, they wave to me, saying, Hi, we see you! And you’re going to be okay. I like imagining nature as less fearful and worrisome than me.
Aaron calls those moments “boosts,” and I’m feeling in need of them lately. My health hasn’t been in a good place (it never really is, but this is an extra not-good place), another doctor acts like I’m bluffing, and insurance denied a treatment because I didn’t try specific medications for eight weeks (I stopped because of bad side effects which then disqualified me), so I’m feeling more sensitive and limited than usual.3
Next month will mark 13 years of chronic illness, which is long enough for a baby to have grown into a whole teenager. I wish all the years and stories of my unwellness could mean something to a doctor by now. The wish doesn’t seem too audacious—just one or two physicians giving at least the care my jalapeño plant received this week. But that’s not my reality yet, and it’s within these dimensions I must exist.
So I do what I can with this dwindled energy, sometimes while fussing and cussing. The other day I was almost irritated by a seemingly trite idea—make a gratitude list!—yet it turns out, thankfulness still helps. Right away, I thought of 36 things I liked and a couple days later, I returned to the porch floor to write down another list. I put treasures like: FaceTime with my grandparents, The Office, sunflowers as big as my face, kind neighbors, and the library. With each new word, one below the other, I sensed God’s I’m-still-here-for-you kind of care. (Maybe this will become my new spiritual practice. Can you imagine it? Knees on cement, Crayola chalk in left hand, a weary woman marking words, evidence that she’s not given up.)
A recent upside is that I’ve been finding solace in books again. When I last visited the library, instead of speed walking to pick up my holds and immediately leaving, I wandered the adult nonfiction aisles in case a few titles wanted to surprise me. The Invisible Kingdom: Reimagining Chronic Illness by Meghan O’Rourke was one such book. I’m about a third of the way through, sobered by the relatable stories and stupefied by a medical world that continues to dismiss chronic illnesses.
I had another appointment last week and tried advocating for myself—subtly, so the doctor wouldn’t make assumptions, of course—but ultimately, got nowhere. I returned home, fell into the hammock defeated, and later pulled out The Invisible Kingdom. I soon found O’Rourke describing my experience:
The actual encounter was always confusing, eleven minutes of liminal contact in which I tried to conduct myself in a way that would make the doctor like me, in the hope they would take some true interest in my plight. But their day was full of tests to order, bureaucracy to cut through, an education that taught them not to say, “I don’t know what’s wrong with you.” And so we stood together in a tiny, antiseptic room, the doctor and the patient, a world apart.
Earlier today, I read a 6-page essay by Dr. Francis Peabody called “The Care of the Patient” which details how personal and significant the relationship between a physician and their patient should be. The essay is from 97 years ago (I’m serious), but seems to stand as a strong, necessary exhortation for physicians to this day.
If the medical world could be reshaped by Dr. Peabody’s convictions that “the good physician knows his patients through and through” and “the secret of the care of the patient is in caring for the patient,” then maybe fewer people (who are indeed very sick) would hear troubling phrases like nothing is wrong or you’re making this up.
I’ve been in and out of appointments my entire adulthood, offering my precious time, money, and even dignity to find help. The doctor on the Big Island thought I was “just homesick,” but of course, the symptoms never subsided after moving back to my parents’, so another believed it was all in my head, then when lab results came back questionable, another doctor’s solution was to blame my parents for “cursed genetics.” I’m not interested in fooling anyone, but if I was, I’d probably pick a lie less costly and oh, I don’t know, a little more fun?
Next time I enter the fluorescent exam room stripped of friendliness, perhaps I will hand over my newest tiny poem:
NO ILL WILL
*
I am not here
to fool you,
for lies will
never heal.
Chronic illnesses aren’t weeds that sprout from one’s imagination on a boring spring day. They have real symptoms with real roots and not being able to see or find those roots doesn’t mean they don’t exist.
Those of us who are long-time patients don’t expect perfect conditions to grow or heal in. We know the soil isn’t always rich and the sun will feel harsh, but if we can find gardeners—people committed to carefully working with us—perhaps the futures we imagine for ourselves will take on new life. Can you hear it? Real voices in medical communities, supporting the chronically ill with the words: we believe you, and we’ll help you. Those words alone could bring a healing comfort.
I certainly feel too small to change any of the medical landscape, but I’ll keep trying to do what I can to point out the rotting bits and hopefully, by tending to my own self and my people and my writing and now the little garden out back, I can show care in tiny, yet significant ways.
Till next time,
—E.T.
I’d love to hear from you 📻
What does perseverance look like for you?
When you’re hurting, what supportive words do you wish to hear?
Do you have a garden and does it delight you too?
P.S. If you enjoyed this post, please click that 💛 to let me know!
Other posts on chronic illness
Bolting happens when a plant enters the reproductive process before harvest.
Within ten seconds of looking up from my laptop, I spotted a ladybug flitting in a frenzy, a bluejay diving into brush above the creek, and a cardinal flashing its stop-sign-red in my periphery. 🐞
Hence the break from writing. I’ve missed being here at Nōto, though. Really.
I found this incredibly relatable, thank you for sharing! Thank God for healing spaces like gardens and words on the page. I believe that someday we will get down to the root of illness. Who knows if it will be in the medical world, but we will tend our gardens in the interim and celebrate what’s alive right here.
Such an important post, Erika. Thank you so much for sharing. xxxxxxx