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Living with the grief of chronic illness

It is spring in Alaska, which means that the sun is out, the weather is warm enough to go outside without a coat, and the snow is clinging in stubborn mounds across the city. It is a tightrope kind of season. Summer is approaching, but everything is still brown and ugly. The air is full of dust from the gravel spread everywhere to keep the roads safe. Cars are covered in muddy water — and everything feels dirty. It’s a hard dichotomy — the hope of summer, the sense of it, and the…


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I remember when I was growing up, that one of the worst things a person could do was take the Lord’s name in vain. Saying “oh my God” was bad enough, but “Jesus Christ” was absolutely offensive. I was among the offended, but it bothered me that “taking the Lord’s name in vain” was among the chief offenses one could make. For a while, I thought it was because the name of God was powerful, that it carried weight. In my pentecostal circles, there was evidence of that. The name of Jesus was thought to be so powerful that you…


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Providing care for a loved one who is chronically ill is a process of deconstruction. My life and what it meant before, and my life and what it means now. My relationship and what it meant before, and what it is and what it means now. My expressions of love and responsibility before, and my expressions of love and responsibility now. It is a slow demolition, and it doesn’t ever feel complete or over because the person in need is still there — no matter the altered form. This fact, the fact that chronic illness is a constant war, means…


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We are a society that loves resolution. Happy endings are preferred, but sad endings are acceptable. We wipe our tears, praising the bravery of the lost, solemnly acknowledging their worth, their beauty. Those left behind receive compassion, even reverence. “So and so was so strong, you know? You were so supportive, such a warrior.” We know what to do with those kinds of endings and everyone can get on board. Doctors talk about the horrors of the disease. Communities rally to support with fundraisers. And all of it is right. I don’t begrudge one single person for their support, compassion…


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I remember hearing this phrase in association with Marie-Antoinette. She didn’t say it, by the way — but it has become associated with her nonetheless. Basically, it is a simple, often thoughtless solution to a complex and real problem. People are starving for bread? Let them eat cake! The result of this disconnect is greater division and hatred. This has been weighing on me lately — this growing tide of disconnected and easy solutions to complex problems. I wonder if we have become a culture of quick fixes, platitudes, and lazy outrage. It is easy to apply disgust to current…


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I watched two shows this year that affected me deeply. The first, and try not to roll your eyes, was called “The Haunting of Hill House.” It was pretty brave of me because I grew up very religious, and even though I’m an Athiest now, part of me still believes in the Devil. Anyway, the series wasn’t what I expected and I have found myself thinking about it fairly often throughout the year. The part that comes to mind now is an idea regarding what it means to be a parent. In the series, the mother is tortured by the…


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My mom was cremated when she died. At first, I liked the idea. It was clean, free from what I imagined to be defilement from decay. But as the years edged on, I found myself longing for some concrete place to connect with her. I envied people who had graves to visit. We spread my mom’s ashes in Hawaii — a world away from where I am. The handful of dust I threw into the ocean air seemed no more significant than the sand on the beach. It was fine. And small. And blew into nothingness within seconds. All of…


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Feeling uncertain can feel like wearing a blindfold. Every step is measured — even when someone who can see clearly is giving instructions. I think of it like this: If I were blindfolded at the top of a building and was told to trust a guide to lead me around the edge of the roof, even though I knew my guide could see where I was going and keep me safe, I am sure I would be absolutely paralyzed with fear. This is what trying to make a decision feels like for some people. What if I can’t trust the…


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I had dinner with a friend last night. She has been happily married for 10 years — and even though she loves her husband and he is a good friend and partner, she questions the sanity of marriage. We had a long discussion about it. About what makes sense and what doesn’t. It’s an interesting topic, marriage. It’s complex — encapsulating social constructs, religious sanctity, and deeply ingrained ideology regarding the nature of love. There are many things I love about the idea of marriage: sharing life, solidarity, sexual and emotional fulfillment. But those things are all part of a…


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1

And that was the moment I opened my eyes

I was the sticky yellow substance inside an egg.

something meant for more than what I was

Something that was supposed to grow — contained and nurtured

But freed too soon — I was a runny

boundless thing. Lacking form.

A mistake.

I remember before — when I was thought.

I was contained in the imagination of my maker

limitless in potential, eternal in pleasure.

I was the embodiment of pure blue sky

Stretching for miles and miles

One hand on the mountain top, the other cradling the ocean floor

Saipanhayden

I am an intervention coordinator at a large Title 1 middle school. I care deeply about people and I like to find solutions if I can. Life is hard. Let's be kind

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