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#sickbody, ankylosing spondylitis, Arthritis, Charis, chronic disease, chronic pain, family, Grief, health, Heroes, Invisible disease, Love, Relationships, sickness, spondyloarthritis, Women, Writing

What Mom Thinks About Me Being Sick

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Mother, Caroline, and Daughter, Charis, at Meredith College circa 1989. Charis is wearing the first dress she ever picked out.

I have ankylosing spondylitis and several mental health issues. I asked my mother some questions about them impacting my life. Here’s what she had to say:

What was I like as a child?

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Charis building muscles at a young age

You were always physically active – as a baby, stretching and leaning toward what you liked/wanted.  You enjoyed crawling, walking, later bicycling.  I enjoyed watching you do backbends and cartwheels at about ages 6-10.  You wanted to be scored – 1-10 – as though in the Olympics.  You loved kittens and puppies.  You enjoyed holding them and carrying them around.  You were inquisitive.  You were very shy as a toddler, often hiding behind my skirts or my legs so you would not have to talk to people who addressed you.  You enjoyed spending time with people of all ages as you became an older child.  You became friends with adults and enjoyed learning new things such as tennis and fishing from your grandparents.  I had come to believe that “it takes a village to raise a child”, so I encouraged your independence in going alone by bicycle into our village and forming many relationships with nurturing adults there.  I allowed and encouraged you to be outspoken to the point of some thinking you were “too sassy”, but I believed that as a female in this society, you would need to be able to speak up and take care of yourself as you grew up.  There could easily be a book about how you were as a child, so this will have to be an incomplete capsule.

Do we have any similar quirks that you have noticed/ Do you think these quirks are the result of nature or nurture? Continue reading What Mom Thinks About Me Being Sick →

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 →

Death, family, Grief, Love, public speaking, Rachael, Raising Ruth, sickness

Remembering Rachael, Raising Ruth

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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 →

#sickbody, Advocacy, ankylosing spondylitis, chronic disease, chronic pain, disability

When you see me I’m acting

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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 →