Learning to Embrace Dependence in Life With a Chronic Illness

A few years ago, in pop culture, there emerged a simple method to categorize a person. One was either a “flower” or a “gardener.” Upon learning of this schema on social media, I quickly and ashamedly became silent — which was not at all like me — as I was most decidedly a “flower,” and by implication, self-centered. I was embarrassed at the realization and hoped no one would directly ask me the question, “Which one are you? A flower or a gardener?” I feared the worst about myself. Aren’t “flowers” self-absorbed? Do they not care so much about the betterment of others as their own intrinsic quest to capture the spotlight… née sunlight?

As many who live with a chronic illness can attest, having to rely upon others often feels like a selfish, yet unavoidable act. At various times in our mercurial lives of medical flare-ups, we are inevitably bound to be waited upon hand and foot. It can eat at our conscience when we cannot even do the simplest things for ourselves and helplessly watch another person do it for us. It must be especially difficult for those inclined toward the “gardener” role to be rendered suddenly on the receiving end of such help.

Perhaps the “flowers” among us find it that much less humiliating when someone gives us a bed bath. A bed bath is a wondrous cleansing feat in which the performer (a patient care technician when in the hospital) unabashedly swipes under the patient’s pits and other bits, while magically rolling up the prone person (burrito style) in the used sheet, then deftly slipping and tucking a fresh sheet underneath. Essentially making the bed while we are still in it! Let me tell you, lying in that freshly made bed with clean damp hair and a dewy lotioned face feels amazing. I call it “bed bath and beyond!” The PCTs always laugh. Flowers are good for a laugh. That’s a contribution, right?

Still, it nagged at me, as I’m sure it does with many of my friends with lupus and other chronic illnesses. What good am I? Why am I deserving of watering and nurturing and sunlight and feeding… at the behest of others? I thought of all the gardeners I knew in my life. My mother, who, since my childhood, thanklessly cooked dinner every night for a party of seven. I was born the fifth of five and destined to take on the most colorful plumage of attention-seeking role. I also happened to fall ill more often, which would garner unplanned attention. Perhaps training for later adulthood when I’d have no choice but certain dependence.

Since my lupus onset 11 years ago, my mother has come to sit with me in the hospital every single morning without fail. She heroically cheerleads me through the most harrowing lows during each sometimes weeks-long hospital stay, all the while being wildly friendly to the nurses and PCTs shuttling in and out of the room. I do nothing but lounge around in a putrid green gown, sometimes writhing in pain… or worse. Yet my mom comes to sit with me. A gardener.

Though my father comes to visit me, as well, his is a special brand of nurturing that entails regaling me for several minutes, that most times spill into hours, with uninterrupted sports stories. He plops himself in the recliner next to my hospital bed and recounts in great detail the blow by blow of that afternoon’s Bears game. His incredible memory deftly transitions to a story about what might have been a mundane 1963 baseball game between the Cubs and the Cardinals and he knows who played what position and who threw what pitch and who was announcing and what the score was in the bottom of the sixth…

On one particular visit, my heart rate was fluctuating erratically from an episode of orthostatic irregularity called POTS (postural orthostatic tachycardia syndrome), as I tried in vain to calm its involuntary thumping like that of a frightened rabbit. Since the culprit was postural, as long as I laid perfectly still, I could harness the heart racing to a barely tolerable 90 bpm. “It was the bottom of the ninth,” I hear my father’s lulling just above the din of my pounding chest, “Detroit Tigers stadium, September 30, 1945. We were down 3-2, when Hank Greenberg drove a deep line drive down of left field, right inside the pole line. Landed just over the fence. A grand slam. Tigers clinched the pennant…” my father recalls his childhood team’s victory. Though he’s oblivious of their effect, my father’s stories are a balm. I think my father is a flower — more like the jovial ivy that covers the outfield wall of Wrigley Field. He leaves the gardening to the turf management.

Our septuagenarian next-door neighbor is, in fact, an accomplished gardener. Her tiny 1930s Chicago bungalow sits so far back from the street that the main crux of her property, her entire front yard, boasts a magnificent flower garden. She speaks with a nurturing Tennessee drawl and constantly checks on me over the lushly garnished back fence where I repose in a zero gravity chair after many a bout with illness, admiring the fruits of her and Mother Nature’s colorful handiwork.

Ever since my partner and I bought the house in 2015, we fell into incredible luck, inheriting an outrageously amazing garden from its previous owners who happened to be a botanist and an arborist. Neither of us knew a thing about gardening. Well, except my partner, who is the figurative kind. The very first Spring, we gasped with delight as each section of this mystery garden budded and blossomed some kind of exotic flower or small tree.

Our neighbor knew the names of them all and taught us how to care for them. My partner took to the task of their maintenance right away. Me, well, I enjoyed looking at them. Immensely. Our neighbor would enthuse, “Y’all are such a blessing. I’m so glad you gals moved in.” I secretly wonder how my laying around qualifies me as a “blessing” when my partner is constantly busy buzzing around the garden and the house, doing repairs.

Then there are the other gardeners — friends and family and neighbors who are there at the drop of a hat, and at all hours of the night — when our dog needs a walk, or a forgotten grocery item needs retrieving, or a wholesome meal needs delivering. My large family (we’ve been through a lot together) consists of mostly gardeners. And, of the flowers, I’m probably the most colorful.

So what good am I? One may ask. A flower, I would contend, is at its best when un-self-consciously helping others by doing what comes naturally. Blooming. Attracting worker bees for a righteous cause. I like to consider myself a squeaky wheel. Eight years ago, after a two-year post-diagnosis pity party of depression, I stumbled onto the salve of lupus advocacy. On a handful of occasions, I’ve even taken my attention-seeking ways all the way to Capitol Hill and to the Department of Defense to lobby for research — for better diagnostics, better treatment, new medication, and, ultimately, a cure. “Look at me!” I shout, with a beatific smile on my flower petaled face. Listen to me! Help not just me, but my millions of more beautiful lupus flowers who are wilting away and sometimes even dying.

It has been a strange year for those of us who’ve already learned the alacrity of adjusting to an unsteady clime. We’ve got an unintended leg up on pandemic life. This past year, especially, brought most of the world to its proverbial knees and had some of us rethink different versions of ourselves. Ought I become a gardener? I silently and genuinely wondered.

Nah, I concluded. I am a flower. I may not til the soil or harvest the compost or wash the bedpan or change the IV bag, but I radiate love and beauty and inner light and laughter, punctuated by an occasional good pun. I make conversation with every person I meet and, though it’s never my intention, and only just occurred to me, probably spread a little pollen of joy with each one. We all bring something to the world. Even the unwitting compost, when we finally complete our blooming cycle.

It is my wish, a wish that I’d blow upon a million seedlings into a warm summer wind, that all of my fellow chronic warriors learn their place in whatever “new normal” has inhabited their lives. That they release the abounding guilt of dependence and learn to love who they are, just the way they are. I’ll let them in on a little secret. Gardeners actually enjoy what they do. So, when a person has found themselves on the receiving end of nurturing, let the soil nourish, the rain replenish, the warmth of a healing hand radiate like the sun… and always remember to say “Thank you” to the gardener.