Tag Archives: Charis

I Didn’t Want to Write Tonight

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

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One of the ‘Some Days’

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.

I’m Afraid of Black Men

I’m afraid of black men. Now that I have your attention, let’s talk about domestic violence. Really, this has nothing to do with black men. Except it does, for me.

I have post-traumatic stress disorder (PTSD), which is triggered when I see a black man on the sidewalk or riding a bike.  This is because I have experienced domestic abuse at the hands of a former boyfriend who happens to be black. I hate this.  I absolutely hate that black men are the trigger.  Why?  Because I love black men. I love everyone. I am terrified that my fear, which has nothing at all to do with black men, might show itself and make a lovely black man think that I, a white woman, hate him. Just because black men trigger a physiological response from memories being pinned to a bed, against a wall, and restrained in a bathroom by my former black boyfriend does not mean I hate black men. It just means that seeing a black man in a public space causes a fight or flight response in me: several moments of intense fear manifested by heavy breathing, a rapid heartbeat, and blurred mental acuity.  The times that these triggers have actually been accurate – when the black man on the sidewalk has been my ex – my panic actually lasts for many hours while my brain replays the encounter along with memories of the abuse, leaving my body tense and my brain a mess. Continue reading I’m Afraid of Black Men

To the stranger who told me I’m not disabled

Most of the time, when people ask for help, they really need it.

Friends at the 2015 Sacramento Arthritis Foundation Walk to Cure Arthritis
Friends at the 2015 Sacramento Arthritis Foundation Walk to Cure Arthritis. Left to right: Cyd, Mel, Charis, Denice, Lori

And many of us are scared to ask because we’re afraid we’ll be attacked for it. A good friend recently put a crowdfunding page together in an effort to help me resist homelessness and survive the winter while I seek Social Security Disability Insurance (SSDI). Today, another friend shared the YouCaring link (edit 2/10/16: link no longer live) on her facebook page in support of me.

What happened next shocked me. Someone commented on my friend’s post about the youcaring campaign to help me. And it wasn’t supportive.

It was along the lines of, “When I am hurting I still get up and go to work. Your friend should find a job, she can work.”

I engaged in conversation with this person over several hours and took screenshots of the whole interaction, knowing the person might later delete her comments (which she did).

My effort was to see her side of the story – and in the end it came out that she had lost a child years ago and she was projecting her grief onto me in the form of hatred and judgment.  It was very sad and all I could do was continue repeating that I would be happy to talk with her in person so she could learn more about ankylosing spondylitis.

Those of us struggling to live with our chronic diagnoses are so often put into positions where we are challenged for our disabilities and forced to prove how sick we are. How degrading.
Continue reading To the stranger who told me I’m not disabled