My name is Felecia Campbell – but most folks call me Fee. I am a young gal in Portland, Oregon, with a prehistoric soul that compliments my old bones. I am living with Ankylosing Spondylitis and its many friends – the various disorders and syndromes that come hand in hand with it. My roster of medical conditions is quite overwhelming for anyone who has never experienced chronic illness. I have always been a fighter though – even before my conception.
My mother was told by her doctors that she would never be physically able to have children but I still made it through to this side – she calls me her “magic egg.” When I was born it was determined that I would need rehabilitation for my legs. My feet were born a bit backwards and it was promised that it would greatly impact my ability to walk, but wouldn’t you know it… the magic egg grew to become a ballerina! It is so strange for me to reflect on all of this now because the irony of my strength really came full circle. My initial symptoms of AS began in a dance studio. Movements that were once so familiar to me suddenly became lost with my growing pain and fatigue. I wound up having to quit my dance lessons. Little did I know at the time that I would be leaving my passion for dance only to begin creating my own music for others to dance to. To this day I am so grateful for the opportunity I had to dance and celebrate my body. I have a clear memory of my ballet instructor once bragging to our group of performers about the flexibility I carried in my spine – what a sap this memory turns me into. My practices and postures that ballet taught to me largely slowed down the progression of my bone fusion. Full circle.
I am lucky enough that I had tremendous support when my diagnosis began, both from family and friends. I also picked up a guitar at a crucial age and that quickly became my greatest comfort. I grew up with a mama who had her own illnesses to cope with, so I learned early on from her that chronic illness does not have to take over your productivity or relationships, just so long as you can take good care of yourself and learn to comfortably ask for help when you need it – this is arguably the most difficult factor of being forever sick. The first specialist I saw about my symptoms was an arrogant doctor who stated that I would “grow out of it.” That put a damper on my whole willingness-to-seek-treatment adventure. When I was 14 years old, I began having issues with my eyes. I was at the optometrist’s office once a week being treated for eye inflammation. It became obvious after a while that my symptoms would not go away and that was a clue to my bigger problem. The eye doctor sent me to a rheumatology office where the real diagnosis began. Oh hi, Ankylosing Spondylitis. My name is Felecia and we are going to become very close companions.
I came of age putting steroids into my eyes several times a day while taking copious amounts of medications – including injecting myself with drugs they give to cancer patients and going to the infusion clinic every 6 weeks. Between my medical routines, physical therapy, and regular doctor appointments, my mental health suffered significantly. When I became too sick to go to school, I found a way to graduate early. I started going to college but had a hard time keeping up with the physical aspect of school. Haunted by the prognosis of my disease and how many years I would be able-bodied enough to work, I quit school and became a working class gal. If you are wondering how difficult it was to grow into an adult while facing my mortality every single day, it wasn’t easy. The most brutal impact of my illness was watching my family and close friends cope with it too. Ten years after my diagnosis began, I can still state honestly that it’s the hardest part of living with AS.
In 2008 I found an amazing therapist who specializes in chronic degenerative illnesses. She has saved my life in many ways and I consider her to have been my most precious treatment. I also discovered the Spondylitis Association of America during this time. The organization put a video up on their website of me talking about my experience with the disease and a song I wrote about growing up with it. Because of this, I began to get contacted by other AS patients and developed some true friendships. All of a sudden I wasn’t alone anymore. A miracle. That same year I started a musical project called Felecia and the Dinosaur which still exists and continues to feed my prehistoric soul. The first album I released was called “Music Infusion,” which referred to a personal cure that only Spondies and their loved ones would understand. While my body was broken, my voice never was. I could be lying in a hospital bed, dying and singing my head off, and I would still be perfectly OK. Even with AS, I get to perform and tour often. I have also released 3 official albums in my career – all of which I consider to be my babies. Music and its timeless rhythms, melodies, and energy will always be my preferred medicine.
In recent years I have experienced remission and I’ve also gone through incredibly long and painful flare ups. I have managed to sustain employment and do work that is very dear to me. I have consistently worked part-time and I recently experienced a legal battle with a former employer over FMLA issues. Since that time I have really brushed up on ADA laws and how I am protected because of them. Having to prove my disability to others has been fairly dehumanizing but I am learning how to become my own strongest advocate. At the moment I work at a peer-run mental health program where I get to share my own experiences with mental illness with others and promote wellness to its fullest degree. I truly love my job.
I am a survivor of the medical industry. Ankylosing Spondylitis has affected my eyes, spine, hips, ribs, lungs, shoulders, knees, neck, GI tract, stomach, skin, circulation, sinuses, muscular system, and my ever growing tolerance for pain and debt. It has also prepared me for other diagnosable illnesses – I live with a daunting neurological disease, endometriousis, and the previous said mental illness. Some days I don’t feel so tough but the truth of the matter is, I am an AS warrior and so are 2.7 million other people. My family tree has shed branches due to this illness and yet it still remains standing tall.
In case you were wondering… Yes, I am still a dancing magic egg.
Thanks for reading,
Oregon, United States of America