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.
I loved it.
Despite some nagging pain that began in my hips and lower back at age 13, almost-nightly spasms during college, and some broken bones and torn ligaments during high school and college, I felt pretty much invincible. Any malady I had I could blame on a direct cause – like, it was my fault I put my hand in front of someone’s foot during soccer practice…except for my lower back pain, which I could never explain, so I just ignored it the best I could. I never felt anything less than healthy and full of life. The more I succeeded the more I felt capable of accomplishing.
I would always be healthy, strong, and able. I loved it.
In 2011, I moved across the country. I needed a change.
It was a decision that I will never regret, but it meant that I was 3,000+ miles away from the family and friends I left behind when the hardest part of my life began.
In 2012, I fell sick with an upper-respiratory bug and I couldn’t shake it. For months I was sick. I couldn’t breathe. I couldn’t get out of bed. Despite having superhuman pain-tolerance I cried from relentless pain. I couldn’t sleep. I lost weight. Twice in two weeks I visited urgent care, first believing I had pneumonia (my lungs turned out to be clear), second fearing I was having a heart attack (an EKG proved my heart was just fine). Doctors tried to blame it on anxiety while I tried to explain that I had anxiety because something was seriously wrong with my body. With some tough perseverance on my part, I fought for a diagnosis and got it. In 2013 I was formally diagnosed with Ankylosing Spondylitis, a severe auto-inflammatory disease that ravages my spine and joints. I was 26.
Arthritis does not let you choose. I did not do anything to cause this disease. I inherited it from my estranged father. And there is no cure.
I now reside in a body that feels as if it has betrayed me. Now, I have no choice but to fight to survive. I have to say yes to powerful high-risk prescription medications and rest even when I want to do something else. It is no longer, “Yes,” to the days full of soccer practice and marathon training, or gardening or lifting grand pianos up two flights of stairs.
I have accepted that I have this disease, but I have not accepted what it has taken from me. I miss sleeping through hurricanes (now I have insomnia); I miss waking up early to go for 5-10 mile runs before working an 8-hour day before working in the garden before cooking dinner before bed; I miss being able to put activities on my calendar without fear I’ll have to cancel; I miss camping and hiking and playing soccer and …. I miss who I never thought I’d lose: me.
So help me. Help us. You may not be the one to find a cure (if you are, oh my gosh, where have you been hiding!?), but you can still help spread awareness. Donate or join advocacy efforts independently or through organizations. Many people also resonate with stories – find or write a post about your story and share it – this is both powerful and empowering.
Feel free to leave your own stories in the comments below, and if you’d like to learn more about how you can help support organizations working toward awareness and cures, here are a few I particularly like:
Spondylitis Association of America
International Foundation for Autoimmune Arthritis
Yes, we can do this. We can find a cure. Yes, we can still live and thrive and enjoy life. Yes, we WILL find a cure. Yes, we will. I’m still learning how to say,
Yes, we can.
Yes, I can.
BeingCharis 
Thank you for your ongoing support through sharing your story. My story has many parallels but after years of being told I had a. s. my doctor has recon dead and says I just have a bad back and many people have the same with much less pain. I don’t have the bamboo spine, just terribly stiff and painful, much worse in the morning. I have herniated discs from neck down, had a disc removed taking two operations over several years because he removed half first and had to go back for the rest. My lower back has gotten much worse since can tolerate very little. My ribs ache often radiating into my chest. I have had many m.r.i.s and xrays, and every test imaginable and have seen numerous rheumatologists, all dismissing me with no diagnosis. My father had severe rheumatoid arthritis, passing at age 51 of complications, in 1972. I am positive for Hlab27, r.a., and send rate is often elevated but not always. I have flare ups that last days to weeks but haven’t had a god day in over a year, feeling worse all the time. I spent years on ever increasing narcotic types but always took the bare minimum necessary, never abusing, but after the effectiveness seem to stop, I would detox and start something new a couple months later. Now I am on tramacet which barely takes the edge off. I had an appointment with a new and highly recommended rheumy through my g.p. almost a year ago and haven’t heard from them. They won’t answer or return my calls.
Although I am 64, I dream of doing things I used to do, like canoeing, hiking, even yard work is a problem.I have almost given up. Thank God I have children and grandkids to keep me from doing the unspeakable.
I feel like I have Reiter’s Syndrome as I had the infection back in the 80s but am left with no dx’d. I feel so helpless.
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Thank you for sharing such tender parts of your story, Bob. I hope you have safe spaces to share more, in person. For now, you are more than welcome to share it here in comments on my blog. I am so glad to read it, even if it is sad.
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