Category Archives: Grief

#sickbody, Advocacy, ankylosing spondylitis, Arthritis, Charis, chronic disease, chronic pain, disability, Grief, health, Healthcare, Invisible disease, Patient Advocacy, Relationships, Role Models, sickness, spondyloarthritis

My Struggle With Three Simple Words

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How are you?

Just three words.

Just three words silence my voice but incubate my thoughts.

The responses I want to give get caught in my throat as I open my mouth to speak; I gag wordlessly without any outward signs of panic; I feel a glass wall erect itself to support and contain my stoicism while I suffocate.

The words I want to use expand in my chest like air being pushed into an empty balloon, threatening to leak out of my mouth in a jumble of hot air and exhaustion.

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Usually I manage to push aside the wordlump in my throat so I can still breathe and respond in a socially acceptable way. I say polite things, or I say I’m not ok and try to change the subject.

Or I stand there awkwardly, ashamed and lime-lighted, drowning in my reality until I realize someone is waiting for my next move. Continue reading My Struggle With Three Simple Words →

Charis, Current Events, family, Grief, Oriental NC, Politics, Relationships

Walmart’s Little Experiment Screwed My Hometown

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20160202_165125In recent days headlines have announced Walmart’s decision to close their experimental neighborhood stores just a few years after the pilot program began. For many this is just another announcement of a mega-retailer changing strategy in order to improve profits. But what is a small failure to Walmart has huge, real-life impacts on the small towns where many of these neighborhood stores were built. A few examples are Oriental, NC; Redwater, TX; Chicago, IL; and Rose Hill, Kansas. People lost jobs, but not before many towns lost their locally owned, family run grocery stores and pharmacies that had adequately served the same community through thick and thin for decades.

In Oriental, Town N Country, in business over 40 years, held on as long as possible against the monopoly and sadly closed at the end of October, 2015, less than three months before news came that the Walmart neighborhood market would be closing. Oriental is a quaint fishing village with a lot of quirky retired people.  We didn’t make national news, but now we’re left with no grocery store and no pharmacy in our village of 900 people.  Our marriage with Walmart cannot be annulled and it came with no prenuptial agreements, so we are left to deal with the mess left on our doorstep. Continue reading Walmart’s Little Experiment Screwed My Hometown →

#sickbody, ankylosing spondylitis, Arthritis, chronic disease, chronic pain, Grief, health, Invisible disease, sickness, spondyloarthritis

One of the ‘Some Days’

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Flashback: March 26, 2015

Today is one of the ‘some days’.

Some days, I wake up in a paralyzed body. Paralyzed by pain, fatigue, anger, confusion, loss.

Some days I wake with two metal rods in place of the muscles around my spine. Someone inserted them during the night and turned on the heat. I am on fire.

Some days I wake in a fog, seeing myself as an island of disease and disability. I am a spider under a lens with its body in focus while the extremities are blurred. My whole being is my lower back, with things like arms and legs tacked on as extras. I feel pain but I can’t move to make it stop. As my senses come alive I become aware of the pain radiating along my whole torso with intensity that only increases.

Some days I wake in fear. I want to move, but movement means pain, yet remaining still means pain. I am afraid of my body yet I am trapped inside it.

Some days my arms flail or just lift and fall when I try to move them – I am paralyzed.

Some days I wake with stiff muscles that spasm if touched. If I bend my knees to my chest to stretch, my body rejects the motion because of those metal rods of muscle some evil force stuck in me and my whole back spasms.

Some days I wake with anger that I am no longer the person I never imagined I could lose. I am grieving the loss of Charis. I am the remnants of Charis and I am trying to make something of what’s left.

I will never give up hope that people living with severe chronic diseases can live more normal lives without fear.

Maybe, one day, I will wake up without fear.

Christianity, Current Events, Death, family, Grief, Love, Muslim, open letter, Racism, Relationships, Religion, Terrorism, Uncategorized

I Love You, Terrorist

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I love you, terrorist.

You have a name, like I do.

You were once a child. We both were, once.

Perhaps we’ve shared the same joy that comes from riding a bicycle. We’ve shared the same flavors of favorite foods, the beauty of sunsets, the feeling of joy while playing a fun game.

We’re both human. We share the same stars, moon, sun, and earth. Our bodies work in much the same way.  Food and water nourishes us and sleep invigorates us.

We both have parents and families that taught us how to discern right from wrong until we grew old enough to explore different sets of ideas and ways of thinking.

There are people in our lives we love so deeply whose losses we would grieve terribly should anything happen to them. Perhaps you’ve known grief at a young age, like me.

We are more alike than we are different. Continue reading I Love You, Terrorist →