I Was Always Going To Be Healthy, Strong, and Able. Then Arthritis Happened.

When I was a child I got into everything. I mean, everything. At least, everything kids get into when they live in southern rural America in the early ’90s (except somehow I skipped the drugs and wild parties). I climbed trees, I played in ditches and mud, I “planted” corn in the fields behind my house from kernels stuck on the left-behind harvested ears. I helped my mother and grandparents in their vegetable gardens. Three channels on our television set meant I watched Mr. Roger’s Neighborhood, Sesame Street, The Simpsons, Star Trek, and cheesily-dubbed Godzilla vs King Kong movies with my brother.  I ran around shirtless in a community of less than 900 residents until I was at least 10, then I became known for speeding along on my bicycle to go cut grass or shelve bolts at the neighborhood hardware store. I swam in the streets when they flooded during hurricanes. I was and am still weird – not cut from the same fiber. But that’s rural America for you. And I loved it.

In elementary school I played basketball and began running in road races with my mother. In middle school I played volleyball, softball, and soccer too, along with band.

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Charis, third from left. Pamlico County High School soccer team. Circa 2004

In high school I ran track and cross country, played soccer, and briefly, basketball. I played alto saxophone and was drum major in band. I acted in school plays. I was awarded MVP and Most Athletic and other athletic and academic honors. I became one of the primary care-givers for my grandmother; I fed her, dressed her, cleaned her, talked with her, and moved her from her recliner into bed most nights.

Throughout my early education, I was also heavily involved in church activities and church youth events. During summers I held part-time jobs in local businesses on top of freelance gigs: cutting grass, babysitting, washing windows, and tackling hurricane clean-ups.

College was just as busy. I played on the soccer team and became a co-captain my senior year. I worked half-time in two campus jobs and remained active in church. I dated a couple people. I studied abroad in South Africa and bungee-jumped from the highest commercial bungee in the world. Each semester included a full course load. I participated actively in multiple clubs, often leading fundraising campaigns for them. On Earth Day I wore dresses crafted from paper I found in the recycling bin.  I was awarded a Community Achievement Award and other academic and involvement honors.

I graduated Magna Cum Laude, and the day after graduation (Mother’s Day 2009) began my first professional career as a job coach – I helped people with disabilities obtain gainful employment, then acted as a liaison between them and their coworkers and employers. I dated more people. I began a community garden in my apartment community. I led a youth group at church. When I got burnt out after two years from my first professional job, I became a professional mover and called it my Sabbatical From Thinking while I lifted heavy furniture and became the most muscular I have ever been.

I loved it.
Continue reading I Was Always Going To Be Healthy, Strong, and Able. Then Arthritis Happened.

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Dorothy’s Oranges

Dorothy has an orange tree in her back yard

Seedless

Sweet

Ripe and ready last week

Far-reaching

Heavenly

The tree groans and shrugs under the weight of full, ripe, juice-running-down-fingers oranges pulling nutrients from within her aged spine of a trunk

A giving tree.

4419-MMS-1443156449716-attachment1-20150924_183634-1Loving our neighbors means sharing our oranges

Because when we have an abundance of fruit, why let it go sour in our back yards?

Dorothy loves her neighbors

Dorothy is a sweet orange

And her sweetness extends beyond the last morsel of citrus – there is always more, and next year the tree will be full again

Sharing the sweetness of our gifts is not a rotten pursuit

 

Tomorrow I Am Famous

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

The Doctor Who Renewed My Hope In Doctors

It wasn’t always this way. I used to trust that doctors could, and would, cure me. They knew all the right answers, whether I needed medication, and which medications would fix me. Going to a medical establishment carried the promise of making me feel better within hours or days.

That was before I became ill with a chronic disease, Ankylosing Spondylitis. That was before I was diagnosed with Major Depressive Disorder, Anxiety, and PTSD.

Many believe, like I used to, that visiting a doctor means getting better. But doctors who treat permanent diseases have a tough job: they stare down diagnoses every day that they can’t eradicate. There’s a huge difference between curing a temporary malady and managing a lifelong disease. And to choose to be a doctor who treats patients with incurable diseases takes special courage – or a desire to make a considerable amount of money.

Doctors leave medical school with heads full of practical clinical terms: elevated T-cell count, HLA-B27 positive, elevated bilirubin, polyenthesopathy, erosion of the spine with bone calcification. But, unless they share our diseases, they do not know what it is like to be in our bodies; to feel our forever pain, our fatigue, our fears. They rely on us to paint a picture of what it actually feels like to have a high T-cell count and polyenthesopathy, but many of them forget to ask, and when they do, sometimes they don’t know why they need to know what the patient is actually feeling. If they’re smart, they try to help us manage our pain, fatigue, and fears by prescribing treatments based on what they see in lab, X-ray, and MRI results, with final decisions based on the symptoms we present. Continue reading The Doctor Who Renewed My Hope In Doctors

A Marriage of Sickness and Health

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