What It's Like to Be Chronically Ill in the Fall
It’s freezing today. As I sit alone on my couch, wrapped in my plaid blanket for yet another day, I’m filled with melancholy. As I scan my Facebook posts to see what the world is doing, I see so many in their Halloween costumes having fun at parties. I see them eating, drinking, laughing and being surrounded by friends and fun. Yesterday there were many seasonal parades going on. Kids dressed in costumes, marching in the parade; candy being tossed and floats making their way down the path. I thought of Anoka, the town I grew up in, which is the Halloween Capital of the World. I marched in the parade when I was young, we all did. Everyone wore their costume to school, even the teachers. The holiday was for everyone, young and old. Even the pets got in on the celebration.
This morning the clouds are muffling the sun. Their hands are covering its face so our neighborhood is cast in a grey chill. As I pull the curtains back just enough to see outside, I can see that my orange plaid bow on my light post survived our first snow from a couple days ago. The sunflower in the center is hanging on, even after all that wind. Most of the leaves from the trees are lying on the ground, damp and decaying. The ones left on the tree next door are beaten and tired, but still hanging on. They’re a stubborn lot, usually refusing to go down until winter is full on.
I said goodbye to my flower garden the day before our first snowfall. I was mourning their inevitable demise. It was hard to believe that something so vibrant could cease to live in just a day or two. So I took out my grandmother’s vase and filled it with as many colors as I could get in there; their aroma still strong and pleasing. I’m looking at that vase of blooms right now. The petals are starting to droop and some are lying on the plate under the vase. I can’t smell the alyssum anymore. Its scent is lost in the dry air of the furnace that’s running.
We brought in our pumpkins before the snow fell so they could warm up enough to carve. They’ve been sitting on the bench, patiently waiting to be made into an art piece. I haven’t had the strength to start my creation. This body needs all its energy to just stay alive right now. I’m drained from the nonstop suffering I’ve had to endure. It exhausts me. Each morning I wake, hoping today I’ll take back what’s been stolen from me, and be able to force this body to function in ways to actually make surviving worth it. I create short daily goals that I try to reach, but rarely do, especially during this torturous time of year. I cling on to hope but find it’s mostly false. I create lists of things I’ll do when I’m finally better, things that give me focus and determination to keep enduring what no human should endure, especially for the long term. I want to participate in this world, be part of this world and interact in this world, but it’s all determined by forces I cannot control.
In the meantime, I watch others get to live the life I thought I’d live – easily performing the basic tasks of life, love and happiness. How often do they have to actually think about what it takes to prepare their body for a night of fun? Carefully measuring the amount of time upright so they don’t lose consciousness from the blood pooling below their head? Or finding ways to hide the amount of pain their body endures with each movement…and with no movement? Masking the toxicity coursing through their body? Pretending that the amount of fun and socializing outweighs the immense suffering they’re enduring to just be able to say they did it? Before it happened to me, I didn’t think about these things, but now I’m forced to. I want to go to a party disguised as a healthy person who doesn’t have to think about all of these little details – a person who won’t pay a high price for the next week, trying to get the body to an acceptable level of misery.
My uncarved pumpkins keep staring at me, wondering when I’ll turn them into the art piece they want to be, that I want them to be. If I were well I’d make them into a masterpiece that I could be proud of, so when I put a candle in them, I could see them light up and shine like a Halloween pumpkin should. We’d surely confuse those caught between the living and the dead as we move from Samhain to All Hallows’ Day when the boundary between life and death is at its thinnest.
The nonstop exhaustion, weakness, toxicity, pain and swelling I experience tells me this is just another goal that won’t be met like I’d like it to. I’ll make the effort, for sure. But it’s more of a matter of getting through the process and being happy that I have another memory of a tortured attempt to add to my growing list. With this much misery to shoulder, activities aren’t fun like they’re supposed to be. They are attempted, endured and recovered from. Posing the question, is this really worth it? I suppose while my heart is still beating, for my own sanity, I must pretend that I’m not the lost spirit caught between life and death.
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