Charis, Writing

I Didn’t Want to Write Tonight

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I didn’t mean to write this when I sat down in polite fury to compose a short Facebook post. I hardly ever mean to write half of what I write.

Some days the thoughts in my head are too overwhelming to unpack. These are the scary, lonely, transformative days that I just want someone I trust and love to hold me silently while my mind takes a trip through philosophy and time.

Silently. Carefully. Lovingly.

The times my thoughts are heaviest usually come after experiences and conversations with people I don’t know or haven’t seen in a while. I’m sensitive to even the most mundane interactions – and because my brain does not operate like a filing cabinet, my thoughts become disjointed and scattered like a portkey-gone-wrong in Harry Potter.  My brain operates like any flat surface in my home: there are piles of mail and bills and to-do lists and bits of fabric and things that lose their way in transit from kitchen to bedroom.

Perhaps you can relate: I often hesitate to unpack my suitcase after returning from a week away from home, scared of making sense of the objects and memories I’ve brought back in the form of dirty clothes, airplane napkins, postcards, and hotel toiletries; and scared of creating the piles of items I will have to eventually return to their proper homes in my apartment. Hours after actually unpacking – in the middle of going through some random shoe box I found hidden under my bed – I realize in addition to unpacking I’ve also washed all the laundry, done all the dishes, and cleaned the bathroom and kitchen.

Some days the thoughts in my head are too overwhelming to unpack, until I can find a place to begin to make sense of what holds me hostage in the hallways of my brain. Continue reading I Didn’t Want to Write Tonight →

#sickbody, ankylosing spondylitis, Arthritis, chronic disease, chronic pain, health, Healthcare, Invisible disease, Patient Advocacy, sickness, spondyloarthritis

Why Sick People Neglect Their Healthcare

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Have you ever seen the training videos for retail workers about the dangers of repetitive motion injuries? They came to mind the other day after a recent experience switching medications to treat my ankylosing spondylitis.

Managing ankylosing spondylitis – or any chronic disease – is like the momentum of a repetitive motion injury, but worse. Chronic diseases come with a slightly different package. With enough rest and care, a repetitive motion injury can heal and go away, but chronic (read: always there) diseases have no cure.

For example:

To get a new specialty prescription I must call my doctor, health insurance company, drug manufacturing company, and pharmacy multiple times over several days (or weeks) to finally get the medication in hand. Often guesswork determines who to call next because as a patient I don’t know where the process has stalled. It feels a bit ironic for me to be the last to know. I hear things like this on the phone: Continue reading Why Sick People Neglect Their Healthcare →

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.

a voice for many