Category Archives: Survivor

#sickbody, Advocacy, ankylosing spondylitis, Arthritis, Charis, chronic disease, chronic pain, disability, fashion, fashion show, health, Heroes, Invisible disease, modeling, Patient Advocacy, Role Models, sickness, spondyloarthritis, Survivor

Tomorrow I Am Famous

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For 60 seconds I will be famous. On the runway, the catwalk – whatever surface my heels will be wobbling on as I make my legs appear longer than they are and my heart less frantic than it will be. Few in the crowd of celebrities, photographers, stylists, and designers will know my name, but for 60 long seconds I will be the one everyone is looking at. It doesn’t matter to them who I am, and that’s ok. I’m there to sell clothes.

But I’ll be selling something else, too. I’ll be selling dreams and awareness for those living with incurable chronic diseases.

For the five hours before I take the first bold step on that plank runway I will be backstage interacting with dozens of people – models, makeup artists, hairstylists, designers, stylists, photographers, and producers. Many of these people will see me as another model who wants to make it big in fashion. I’ll be another face to paint, another head to sculpt, another frame to drape and dress. I don’t blame them. That’s why most models walk in big fashion shows – to make it big. But I’m not in this to be America’s Next Top Model.

I’m in this to share my story. I’m in this to bring fashion and sickness together in a powerful way that changes people’s perceptions and awareness of invisible illnesses.

Backstage while I’m getting hair and makeup done, there is plenty of time for conversation. Continue reading Tomorrow I Am Famous →

#sickbody, chronic disease, chronic pain, disability, family, health, Love, open letter, Relationships, sickness, Survivor

A Marriage of Sickness and Health

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Dear future partner,

We haven’t met yet, or maybe we have and time wasn’t ready.
We need to talk. Now. Before I fall in love with you, before you fall in love with me.

Because I don’t want my disease to cause you to leave me.

Too often I see sad posts in online support communities for severe disease groups. Like this one:

“My spouse just asked for a divorce after 25 years of marriage. She said she could no longer handle being married to my condition. I work full time, I do chores, I am a great partner and parent. I just can’t hide when I’m having such bad pain. I feel so alone. Can someone share how they got through this? How can I be in another relationship if I know my disease could cause someone to leave?”

These posts wrench my stomach. I cry, “Another one?” And I have two reactions: hope and fear.

Continue reading A Marriage of Sickness and Health →

Equality, family, Gender, Inequality, Love, poetry, Politics, Relationships, Sexism, Survivor, Women, Women's Rights, Writing

Child Bride

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Underneath all the layers

A girl sits

To find a smile on her shoulder

The mirror tells her so

It does seem odd

Amid the haunted laughter of her mother

To see a smile there

#sickbody, ankylosing spondylitis, Arthritis, Charis, chronic disease, chronic pain, health, Invisible disease, poetry, spondyloarthritis, Survivor

Holding Hands With the Reaper

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People tell me I should smile more.

But look inside me.

My toes. My toes point soundly forward in shoes that should have my prescription orthotics in them.  I choose not to because I’m 28 and I’m wearing heels as long as I can, so I can feel the “normal” parts of my 20s – and choose pain that I cause myself, thank you very much. I want reminders in 5 years that I could pass as someone my age.  Right now my toes are sound.  I trust my toes, most of the time.

My plantar fascias are aching. They threaten to cramp most nights as I lie in bed, still awake after hours of restlessness.  They ache and throb as if my heart itself has moved to the bottom of my feet. I ask a lot of my feet. These feet hold me in place as I struggle against the rest of me to cook, bathe, check the mail, pedal my bike, press the sewing machine pedal, and occasionally walk in high fashion runway shows.

Though I’m largely unaware of the pain until I pop my ankles, they remain stiff all the time. I rotate my feet clockwise and counterclockwise, back and forth in quick rhythm, in attempt to loosen my ankles and rice krispies happen.  You know, snap, crackle, and pop. Rice Krispies don’t hurt, but my joints do. How can these sounds accompany so much hidden pain that suddenly takes the red carpet?

My knees are chronically, invisibly enlarged from years of soccer and running long before I knew why my injuries were so intense, why they didn’t heal like they should. My quads and hamstrings play injury-tennis, back and forth. The pain is in your court now, left hammie. My weakened muscles are constantly overcompensating for what my body can’t naturally do: fight inflammation, toxins created by overuse, expectant injury, and scarred tissues and bone spurs.  Instead, my body fights my joints as if they are alien matter. Continue reading Holding Hands With the Reaper →