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My life has been nothing short of exhausting. There’s nothing like a life interrupted to gain perspective.
Having grown up with a brother who suffers from quadriplegia and profound retardation as a result of Cerebral Palsy and severe intellectual impairment, I became grounded very young and was raised to never take anything for granted. However; nothing centered me more than my own personal hurdles. Despite an often overlooked [congenital] sensorineural hearing impairment, I had a seemingly normal and active childhood. Even though I was the kid that tripped over the air, I had big hopes of being a dancer.
Early on, I knew two things for sure: by the age of 3 I knew I wanted to dance and by 14, I knew I wanted a career in psychology. I guided my life around those loves and my entire educational path all the way to graduate school was geared toward achievement in those areas. Though not without a struggle, my goals came to fruition when I began a career as a Counselor and started dancing professionally. As soon as I started climbing up, my health concerns started pulling me down.
I began formal dance training in middle childhood and was a quick study in ballet. I was fortunate to dance as a paraprofessional in college before hitting the professional scene. Subluxations, spontaneous genuflections, pain, and a laundry list of other symptoms that were previously viewed as nuisances, suddenly began to grossly interfere with day-to-day life.
Despite increased issues, in my preteen and teen years, I didn’t begin continued treatment until my early 20’s. Doctors were baffled; either blaming my ballet, tap and jazz dancing or naming stress as culprits. With no inciting event, I was often referred to as “a complicated case.” Sadly, I spent just as much energy trying to hide my conditions as I did trying to treat them. On top of the stigmatization associated with invisible illnesses, I also felt guilt and shame for my chronic conditions and pain because other symptomatic family members seemed less affected and my obstacles seemed minuscule in comparison to my brother’s.
I also had my own family to tend to as I married and started a family while in college. My husband and I devoted our attention to our three children, whom we welcomed through high-risk pregnancies, which came with Perinatologists, cerclages, preterm birth, etc in-tow. So there was no room to coddle myself. I have always been ambitious and goal-seeking, so I masked my struggles by immersing myself in work, school, and my many enlistments. One of those enlistments was genealogical research, which I started in my late teens. I became completely lost after my issues got the best of me; preventing me from dancing and forcing me to leave a counseling career I worked tirelessly to achieve. Genealogy was my saving grace and got me through it all.
I have been struggling my entire adult life and after having exceptionally hard years in 2014 and 2015, I changed my mindset and vowed to challenge myself more. So in 2016, at 46 years of age, I returned to the dance studio after many years away. I also had been volunteering as a counselor for chronically ill individuals and as a proponent of dance as therapy, a lightbulb went off. In spite of my obstacles, I found a way to merge my skills and education in dance and behavior and began advocating dance/movement therapy. In the midst of defeat and despair, I found silver linings. Then after more than two decades of a futile, circular treatment odyssey with various diagnoses and countless referrals I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) by a geneticist in 2017. Suddenly my entire life made sense.
I found the EDS community after my diagnosis and was shocked to find that support and resources existed. As a psychology professional, I offered support to so many but never found the support I needed until then. Inspired by Lara Bloom, I left a screening of ‘Issues with My Tissues’ knowing I had to do more. First, I had to heed my own advice and stop hiding my conditions. I launched [Angie’s] hEDS Tales to spread EDS awareness and offer support to sufferers and others with chronic illnesses and invisible diseases.
I gladly promote The Ehlers-Danlos Society and take part in awareness campaigns. Aside from my usual participation in May Awareness Month events, my 2020 resolution included raising the bar. I entered Zebras Got Talent and was ecstatic to take third place. Additionally, my zebra themed pandemic birthday honored my mottos; dance in the rain and never miss a chance to dance.Tags: awareness, Coping, Dance, hEDS
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