Tag Archives: facebook

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

Remembering Rachael, Raising Ruth

Rachael died the day before her daughter was due to be born.

But baby Ruth was already over four months old when Rachael died. She was born so early she weighed less than a pound – 0.95 pounds, to be exact. That’s less than the weight of a four-stick package of butter.

Our physical bodies are on loan to us.  They will die. It is our spirit bodies that are unique and will never die.  It is our spirit bodies that fall in love; our physical bodies only transmit it through touch. It is what we leave behind of our spirit bodies, our love, that becomes our legacy. Continue reading Remembering Rachael, Raising Ruth

When you see me I’m acting

When you see me in public I’m putting on a show. Curtains and…action. Seriously. All the world’s a stage.

Especially when you’re sick. And I mean sick.

Whether you have cancer, ankylosing spondylitis (AS), multiple sclerosis (MS), lyme disease, amyotrophic lateral sclerosis (ALS), fibromyalgia, gastroparesis, vitiligo, rheumatoid arthritis (RA), depression, anxiety, post-traumatic stress syndrome (PTSD), etc etc etc, or a mix of more than one extreme disease, you’ll probably relate to the desire for “normalcy” in this post.

Continue reading When you see me I’m acting

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