Tag Archives: chronic illness

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.

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

Accessing Welfare Is Easy

Just fill out the forms, submit them, and wait for the phone to ring, right?

Some of you probably know late last year I began the journey to join the throngs of people who subsist off Social Security Disability (SSDI) or Supplemental Security Income (SSI). Truly, I tell you, it was such an easy thing to recognize and claim I could no longer work.

Not.

I got so excited when I thought about the idea of living on an average of SSDI $1,022.29 per month, or SSI $561.60 per month. Actually, less than that, since “The amount you receive each month will be based on your average lifetime earnings before your disability began. It is not based on how severe your disability is or how much income you have.

Not. Could you do it?

Why have I spent the last two years using every ounce of energy I have to try to earn a living?  Because the last thing I wanted to do was admit that I was too sick to function like the normal, healthy human being I knew I would always be. Because I was raised to work hard, and remember, there are people out there who have it worse than I do. But I learned those things when the biggest challenge in my life was convincing my soccer coach to let me play the whole match without subbing out. I was the super-involved kid in high school: on the soccer team, track team, in band and drama, and a straight-A student who graduated 10th or 11th in my class. I could do anything and everything and that’s the way the world worked for everyone else too, if they would just approach life with all the vigor and energy I had rattling in my pockets.

That was then. It’s different now. A diagnosis of ankylosing spondylitis flipped me over and shook the spare change out of my pockets. Where I used to sleep through North Carolina hurricanes that hurled tree branches and rain pellets onto the roof of my house, I now rarely find REM sleep even in the most relaxed spaces. Fatigue affects my mental and physical functions, sometimes causing me to lose the word I was about to say in the middle of a sentence. My depth perception is off, causing me to hit my head on clothes racks and slam into door frames with my hip.  I now focus on the basic needs to function and survive, which involves a much different skill-set than my original dream of saving the world as a professional soccer player and community garden coordinator. Others my age are focused on getting a promotion at work, losing weight, starting a family, buying a house, and finding a good group of friends to grow old with.   Continue reading Accessing Welfare Is Easy