Before I keep going, I want to express how lonely it can be to trudge through life surviving a disease that people do not know about. I spend substantial time and energy educating friends, strangers, and even doctors about my condition, which leaves little room for receiving compassion and empathy – like the supportive gestures people usually offer to someone who has a disease in the limelight. Everyone knows cancer is bad, but AS is not a well-known disease, so for a celebrity to name it on stage is life-changing. Continue reading Talking Ankylosing Spondylitis with Imagine Dragons’ Dan Reynolds→
Recently, during a visit to the pharmacy, I noticed someone wearing the same compression gloves I was wearing.
“Hey, nice gloves!” I held up my hands to show mine.
She responded, “I have Raynaud’s.”
I said, “I have Ankylosing Spondylitis.”
…crickets. I might has well have just ripped off my clothes.
She looked as though I’d spoken another language. For a disease that is oh-so-NOT-rare, it sure feels like it in these instances. Not only is it a difficult pair of words to pronounce, people’s initial thoughts might revolve around names of dinosaurs – Ankylosaurus Spoondywhat?
The Affordable Care Act (affectionately termed Obamacare) is likely to be repealed in a few months.
I’m told personal stories are powerful, so I want to share mine.
I was always going to be healthy. Aside from a slight concern when I quit a job that offered health insurance and took another job without it, I never once considered I would need a team of doctors. I boast a background as a college athlete, professional mover (yes, heavy furniture, etc) and otherwise health-aware person.
But my body lied to me.
Nearly four years ago, I was diagnosed with Ankylosing Spondylitis, a severe disease that causes rampant and painful inflammation in the spine and other joints in the body, sometimes leading to the growth of bone spurs that fuse spinal vertebrae and hips. I wasn’t diagnosed by a healthcare provider at first – I found out I inherited this disease from my father after matching our symptoms.
An oft-used quote at my alma mater is: “From the outside looking in, you can never understand it. From the inside looking out, you can never explain it.”
This year I went to Burning Man, an arts, music, and alternative lifestyle festival in Black Rock Desert in Nevada. Upwards of 70,000 people come together every year the week leading up to Labor Day to party, play, explore, gift, create, and survive in the middle of a desert complete with dust storms, extreme temperatures, and limited access to resources. You just have to experience it.
My initiation as a virgin to Black Rock City involved hugging a naked man, hitting a gong, and rolling in the dust. Immediately, I was Home.
I went to Burning Man intending to spend time at the Temple, where people leave things they need to release: prayers, tokens, fears, celebrations, memorials. There are weddings, funerals, meditations, and services; people crying and hugging and others alone in silent introspection. It seems the Temple consistently attracts a larger crowd than any other place in Black Rock City. It’s a place to take a breather from partying, to find a safe space from an overwhelming emotional experience, to celebrate or remember, or just stop and feel. As with all things Burning Man, the Temple does not stay. We cling to its temporal nature and wait for it to be set ablaze the final night, cleansing us of whatever we left there. It’s a symbol of transition and release. Continue reading Burning Man and My Disease→
I grew up privileged – white, yes – but also without ever considering what life would look like if my mother’s job did not provide her and her family with healthcare.
When I had walking pneumonia in fifth grade and was in bed for three weeks, I never considered what it would mean if my mother had to choose what to do or where to seek help if we didn’t have insurance.
When I was on birth control pills in high school, the drug co-pays were predictable. I didn’t fear my medication would suddenly become cost-prohibitive.
When I broke my nose, I never once considered that some people couldn’t go to the emergency room because they didn’t have insurance.
When I was in college I tore my ACL and later broke my hand playing college soccer. My bills were covered. I didn’t know other students didn’t have the healthcare I accessed.
I believed healthcare was something everyone had. If someone got sick or injured, s/he went to the doctor, paid the copay, then went to the pharmacy, paid the copay, etc etc.
On April 11th, 2013, I walked into my first appointment with a Rheumatologist and walked out with a diagnosis of Ankylosing Spondylitis and the beginning of a life of advocacy, both for myself and for so many suffering silently with this progressive, degenerative, extremely painful disease.
I was always a strong person, yet I am stronger now than I ever was before, but in ways I don’t want to be. I would much rather have the freedom to choose to be mediocre if it meant I could have my health.
We do not choose to be strong. We become strong when we choose to survive.
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.
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.