Journeys, battles, spoons, and other metaphors

"Think of yourself as a healthy person who just happens to be sick," a doctor told me.

"I've seen many patients like you. You're ambitious and a high achiever. Find some ways to deal with stress, and you'll get better," another said.

Yet another specialist told me, "Stop telling yourself the wrong stories. Keep fighting, and you'll be back to your normal life soon."

So many medical professionals suggested how I should think in those early years of chronic illness. Yet, I struggled to formulate my own words and thoughts. At times, I literally could not speak. It took immense effort to sit up, let alone haul myself to a doctor's office on the other side of campus. I was overwhelmed by full body pain, pressing fatigue, and roiling brain fog (a state of cognitive dysfunction).

A healthy person with a side of sickness? It felt like the infection that had triggered this onslaught had already devoured my body and mind, leaving me a husk of myself.

Battle talk. Normalcy. Monsters and destruction. Language is powerful. Metaphors and stories help us understand our world and circumstances, in the hopes of recognizing ourselves and getting recognition from others. The right words can encourage empathy, assuming that a glimpse of another's experience will lead to compassion.

Great, right? The more metaphors, the merrier? Well... it's complicated.

Miscellanea, etc. / 17 Feb 2017

I've had a string of flare ups in the last couple weeks and have been spending more time at home than I would have hoped. Thanks to technology, though, here is a smattering of miscellanea that has kept me occupied in my couch-bound days:

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_ SCARS ARE BEAUTIFUL

Rachel Sussman, “Study for Sidewalk Kintsukuroi #01 (New Haven, Connecticut)” (via Hyperallergic)

“Cracks represent something in need of attention, and the surfaces we walk, bike, and drive over are usually overlooked until they’re in truly critical condition,” Sussman said. “By gilding them, it’s a way to see what’s around us with fresh eyes and to celebrate perseverance.”

Artist Rachel Sussman takes the Japanese tradition of kintsukuroi, repairing ceramics with gold, to the more macro scale of the floor, the sidewalk. I can't help but be drawn to her careful attention to the scars in our cities. Her work is currently part of an exhibition on gold at the Des Moines Art Center. (via Hyperallergic; emphasis my own)

[#invisiblefight] 30 Things

As part of Invisible Illness Week, I wanted to share a relative snapshot of my illness and a bit of what the day to day is like. I can be particularly wordy (despite being a Twitter user ... those restrictive 140 characters), so it was hard to keep my responses to a minimum. But I did my best to not write a novel! (Novel writing is a task for November...)

The meme below is a II Week and Rest Ministries initiative. I tried to answer as candidly as possible, editing my responses in some places but trying to keep what first came to mind. If I were to fill this out tomorrow, I might give a different response -- all of them true. Every question is the tip of an iceburg.

I'd encourage you to fill one out for yourself and to read others' responses. They're little windows into a life that otherwise might remain, well, invisible.

[#invisiblefight] Invisible Illness Awareness Week 2015

September 28 through October 4 is Invisible Illness Awareness Week. Started in 2002 by Rest Ministries' founder Lisa Copen, it's an annual week devoted to raising awareness and supportive encouragement for the many around the world who are dealing with invisible chronic illnesses.

Last year was the first time I had heard about it, and since then I've been thinking about this year's initiative. What I look the most forward to aren't the facts, although those are helpful for educating myself and others about chronic illness. But it's really the personal stories that hit me, putting human faces and names to the seemingly-anonymous figures floating around in medical journals and in the media. And knowing a bit more about the struggles of those around me makes my own feel lighter.

This year's theme is My Invisible Fight. So, what is your fight? 

Or is your friend, family member, neighbor, colleague, labmate, or classmate in the midst of a fight that you might not know about? Maybe this is the time to find out -- or at least be willing to serve as an open ear and heart. You never know who might need it.

Check out the website, the Facebook page, and the blogs dedicated to the cause. I hope to be blogging next week to share a bit about my own fights. See you then!

3 years, or when enough is truly enough

Yesterday was a milestone of sorts.  Here is what I wrote:

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Today is a funny kind of anniversary, bittersweet and strange.

A little over three years ago, I went to Sierra Leone and came back with malaria-like symptoms.

Exactly three years ago -- March 19th, 2012 -- I was nearly paralyzed by an unknown illness.  And it's been a long road since then.

In the beginning, I played the "what if" game.  What if I hadn't gone to West Africa?  What if I hadn't gotten sick?  What if I hadn't eaten that burrito (the mundane dinner I had that "fateful" night)?  What if I had just finished my thesis when I was supposed to instead of extending it one semester more?

Miscellanea, etc. / 05 Feb 2015

Happy new year!

Although we're already a month into 2015, the year still feels fresh and brimming with possibilities.  It's also brimming with snow here in New England.  Some of the snow drifts and shovel-crafted mountains are taller than my head -- which isn't very difficult, given that I am only a smidge over 5 feet (or about 1.5 m for the rest of the world).

One of my new year's resolutions (a post on resolutions to come) is to write and blog more often, perhaps up to once a week if I can get my act together.

A glimpse of campus under cover -- about 2.5-3 feet.

And now, the miscellanea for this week: Five links that have caught my eye in the last few weeks, a mix of serious, random, and fun:


January 12, 2015: Five years since the Haiti earthquake, or is it three centuries?

A wordless comic with splashes of color illuminating a hunter's inadvertent adventure.

While waiting for Season 2 of Serial (my winter podcast discovery), a fun hyperlinked illustration to satiate the appetite.

Does joint pain have anything to do with the gut?  Some say yes.

Keeping your personal information out of the hands of data brokers.

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Don't fall too far down the rabbit hole, though.