Phloxes overthrew my garden. Variegated pink crowns upheld by green stems
crowded and cast shadows on the picked-over strawberries. I foolishly thought I
could control wildflowers, not knowing they sprang up and out of the soil with no
warning and no regard for their surroundings.
A few years ago, I began exploring the mystery of plants and flowers. Every
day, I donned ragged t-shirts and old jeans before heading outside. Under the scathing sun, I hunched over garden beds, slowly accumulating soil under my nails. Cabbage,strawberries, broccoli, tomatoes, eggplant, arugula, zucchini. It was missing something. Mint, rosemary, lemon balm, lavender, thyme, sage. Yes, this was the garden I wanted, the garden I made for myself.
My path to plants and flowers was not straight or predictable. I found myself tending my garden after I learned to tend my health, exploring the mysteries of nature while navigating the mystery of the human body. I have heard the exclamation “Well, aren’t you just a medical mystery!” far too many times, with doctors staring at me
the way I now examine those unpredictable wildflowers. Chronic illness locks you in
perpetual grieving — the grief of what you cannot do or be for yourself and others. The anguish of hope gained and lost. You grieve for the body you can’t have, the health it can’t provide, the life it cannot give you, and the one it leaves you: plans unfulfilled, promises broken, trips not taken, paths not followed, experiences unlived. Your body mourns the beauty it cannot hold and the peace it cannot feel.
My chronic illness had always impacted me, but I had always persevered, tried
to control it. But at some point, you cannot control wildflowers. Chronic hives no longer allowed themselves to be covered, bone pain no longer allowed itself to be dominated, endometriosis no longer allowed itself to be drowned out with Ibuprofen, chronic nausea no longer allowed itself to be glossed over with sea-sickness bracelets, Gin Gins, and Zofran. My body, my garden, was not in control and was too exhausted to pretend to be.
People tell you: you cannot lose hope because if you do, it’s over. I don’t know
what “it” is, but I know that not having hope is not the worst feeling.
I have been chronically ill since I was eighteen months old. I have been trying
and trying and trying to get better for eighteen years. My body has been a warzone, an experiment, an exciting mystery for doctors, and a set of symptoms devoid of
personhood. It has never been a refuge or a home. I have done every diet, taken
countless medicines, had multiple surgeries, and undergone extensive and invasive
testing. I have done that — relentlessly done that — for almost two decades. When your body is Sisyphean, hope can feel fatal. At what point can we say, maybe the boulder can stay down here? Maybe the wildflowers can stay? Being chronically ill is one of the most exhausting experiences, and we place so much pressure on chronically ill people to stay hopeful.
When hope fuels your treatment, knowing your illnesses are hard to treat (if
even possible), and it doesn’t work, you become bereaved. And you kick yourself because you knew. You knew it wouldn’t work. But somehow, you convinced yourself it would, that this would be the one that would change everything. It is a rebirth — or re-death— of sorts, the experience of “becoming” chronically ill again because, for a second, you convinced yourself you wouldn’t be anymore. And then you do it again. You start again, replanting the strawberries that phloxes will make their own.
I will not and cannot do it anymore. Chronic illness already feels like an endless
struggle to tread water, slipping into drowning spells, scarcely staying above the water. Hope can be a life-preserver, and we love to believe, project, and impose that view — but it also can be a cinderblock. False hope is far more dangerous than having none at all.
How could I accept the wildflowers when my acceptance is contingent on their
disappearance? How could I get to a place of acceptance with perseverance contingent on hoping I will get better? I couldn’t. It is not possible. I do not think I will ever be fully well; I do not know whether I will ever feel better than I do now, I might, but I also very likely might not. People tell me not to say things like that, that it’s grim. But it is true, and keeping the facade, doesn’t keep depression at bay, it brings it closer.
Hopeless has such sad, pitiful, and tragic connotations. When I say hopeless, I
simply mean the absence of hope — forget the baggage. I think my health is hopeless. But I accept that, and it has been the most transformational shift I have made. I am hopeless in my health, but not in my life. Because there is more to life than that. And at least now I can imagine my life. When you depend on hope, you cannot imagine your life because you are waiting for a fundamental change to “begin” your real life. I always felt like I could picture my life and what I wanted once I got through this interpolation of illness and disability. Once I accepted my life as it was, I began thinking about what I could do if my life didn’t dramatically and improbably change. Why shouldn’t I learn to work with the wildflowers instead of against them?
I still try treatments, and I still go to more doctor’s appointments than most
people (do you text your doctor, too?), but I go into everything with the attitude that if something works, that would be great, but it probably won’t, and that’s okay. It is easier to keep going now that I don’t have the hope everyone always wanted for me. Now when things don’t work, I just keep going. I am not incapacitated by disappointment. Hopelessness doesn’t have to be self-pittance or complacency; it can be a form of acceptance.
My relationship with my body and my symptoms is better, too. I used to have
an adversarial relationship with both, but I’m slowly bridling the psychomachy, the
contention between body and soul. I used to view my illnesses –– pain, nausea, fatigue –– as something my body was doing to me. I now see them as something my body and I endure together. I am struggling, but so is my body. I understand that I am the same entity as my body, but illness creates a detachment. I used to be angry at my body, angry at myself for being weak, tired, and ill. While I still deal with anger and frustration, I don’t turn them inward.
“Phlox” means flame in Latin, and I like to think it is a restorative fire. Phloxes
overthrew my garden; they burned down what once was. Instead of trying to mold ashes into the life I once had, I will learn to live among them. I cannot control the wildflowers, and I won’t pretend that one day I will be able to, but that doesn’t have to make today and tomorrow less hopeful. Today I will live with the wildflowers, tomorrow I will live with the wildflowers, maybe forever, I will live with the wildflowers.