Developing a Trained Eye

Evvie Lionheart

1/4/20264 min read

a sunset over a lake
a sunset over a lake

On the "About" page for this website is a photo of me standing by a banana tree, smiling.

To the untrained eye I look perfectly well. But I can see that my eyes were red from inflammation and dryness, my shoulders are rounded from the fatigue of standing upright and needing to sit, and that I was exhausted from being out in the heat even after only the 15 minutes it took to do this photo shoot. I say to the "untrained" eye, because others who live with chronic illnesses can recognize the signs even in someone who is putting on a brave face.

About a year after my diagnosis with Sjögren's disease, I sat waiting in the same clinic in the Hope Creek village down south of my home in Cayo, waiting to see the rheumatologist. I've sat next to a young woman with springy curls and glasses wearing a long-sleeved white sun-shirt, a green plaid umbrella balanced beside her chair. It's so interesting to note these things, to some simple outerwear or accessories, but I recognize them as medical devices. Because for us, skin exposure to UV rays from the sun can cause an autoimmune flare, aptly named. Living so near the equator, this means we have to be extra careful as sunlight is particularly direct here. We talk casually about what it's like to live in such a hot climate and not be able to go to the beach, or wear short sleeves outside anymore.

During our conversation I learn that she and I had our first visit and received our diagnoses on the same day back in October 2024. Like me, thanks to medication and lifestyle changes, she is doing much better than a year ago. She is only 16 years old, and yet speaks with earned wisdom that impresses me as she shares what she is doing to take care of herself since her diagnosis, and I commend her on wearing the sun-shirt and avoiding sugar. We compare umbrellas, noting that we both have double layered ones to block out more of the sun's rays.

"If I were looking at you walking down the street, I wouldn't think you were sick," she says.

"I get that a lot," I respond. "People tell me all the time, 'Well, you look fine!' " I press my lips together in resignation.

"But as I look more closely at your face, I can see that you look really, really tired," she finishes earnestly.

I feel a wave of intense emotions wash over me in that moment, at feeling seen by a fellow chronically ill person who recognizes that tiredness, and how to see it in my face when most do not. I feel my throat constrict, my chest tighten and my lips press together to contain emotions that might otherwise escape as a sob. Noticing this, I inhale deeply, and exhale with a quiet sigh, then sit back in my chair. Words escape me but I look at her with gratitude and hope it conveys what I wish I could say.

Remembering that moment to write about it now, I feel my eyes begin to burn, not with dryness from Sjögren's, but welling with tears generated with great effort from auto-immune-inflamed tear glands. I knew as soon as I felt these words land on my ears that this conversation would stay with me for a very long time.

There was a time in my past life when hearing those words might have offended me, or felt like an insult. I marvel at how in this new reality of living with an often invisible illness, being told by a fellow autoimmune sufferer that despite looking put together, my face shows that I am deeply tired feels profoundly validating. I was tired. I have to get up at 4:45 am to wait in line for an hour, just to take a crowded and uncomfortable public bus 2.5 hours to get to that clinic every 90 days. Furthermore, I have been fatigued constantly for over a decade. I am not sure that I remember what my body vital and energized feels like anymore. I wonder if I will ever experience that again.

In the spring of 2024 before my diagnosis, as I was enduring the El Niño heat wave, I helplessly watched a large chicozapote tree behind my home in Bullet Tree village slowly die from the extreme heat and drought. During that year 4 trees immediately surrounding my home died in the space of just 10 months.

As I watched the life slowly leave that tree, I felt a profound kinship with this living being that has grown for decades, housing birds and mating iguanas who often frolicked in the dead leaves at the base of the tree during the last year of its life. After hanging laundry on the line off the back porch one extremely hot morning, I stood tearfully gazing at the tree, watching its leaves fall.

"I see you," I said deliberately to this fading giant. "And I won't forget."

After the conversation with this young woman, I remembered the tree again, and I hoped sincerely that the feeling I had at being witnessed by her was felt by that old tree. The gift of being seen, even in illness and death, is profound. And it's very possible that the tree could see me suffering too, that we were witnessing each other, two different species fading and experiencing reverberations of the inflammation living within the earth's ecosystems. Something about that tree being there and me being able to speak my witness made me feel less alone. And that is no small thing. This is the ground where Climate Somatics begins: in the recognition of our shared fragility and the connection we forge by acknowledging it, in each other and in the world.

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