"My past is my past. A book on the bed stand. At any point, I can pick it up and revisit the joy or the pain, but its contents will not rule me anymore. The life still ahead of me is a clean white page. There is work to be done. A world to be explored. Stories inside me still aching to be told."
My greatest insecurity? I've never worked a corporate job or established a career. The thing that no one ever talks about when you're disabled as a teenager is how you will fulfill your dreams when you originally dreamed those dreams in a body which was capable of anything you asked of it.
I grew up reading and dreaming, followed by more reading and dreaming. At 8, I wanted to be an aquatic physical therapist. In 5th grade, I decided I wanted to be a Mandarin major in college (and for 2 years at UNC, I was). I grew up with zero desire to have children (although being an aunt is one of my favorite joys), but constant dreams about what I would do and where I would go. I grew up knowing that if you work harder than anyone else, if you put in the hours and precision required, you can accomplish great things.
Until recently, chronic illness shattered that confidence. As a freshman in high school, I went from swimming 9 times per week, nerding out over homework (aka enjoying school), being excited to write essays and debate in class, and counting down the hours to my favorite class (improv), to lying down in the back of my car during lunch so that maybe, just maybe, I could keep my head off the desk during class. I remember trying to ignore the migraines, weakness, nausea, sweating, and heart palpitations during school and swim practice. I thought it was normal to black out on leg days, but everyone else had more grit... believing I lost that grit was the ultimate blow to my confidence. I still remember the first time someone told me this was all in my head... mind over matter, he said. I didn't respond, but when I got home, I cried. Because if I believed that, it would mean the aspects of my inner character I valued most were no longer true.
I shouldn't have listened. I should've trusted myself. Instead, like an outer body experience, I watched myself go to college and make self deprecating jokes about how lazy I was for skipping class... all the while subconsciously hoping someone else would see that wasn't true... that I was struggling to leave my dorm room most days. When friends left the dorm early and returned late, I didn't correct them when they assumed I had also been out on campus all day.
Don't do that... don't ever put yourself down in the hopes of someone else lifting you up.
Laugh at yourself over actual funny things, like queefing hella loud during a yoga class, but do not shoot your character down (even with jokes) just because you want to hear someone disagree... do not wait for someone to save you and hold your hand through this process.
It's not another's job to define you or see the best in you, even though some encouragement along the way is healthy. It's your job to define and celebrate yourself.
I recognize that the medical community is in desperate need of awareness so that sick, young people can receive the validation, treatment, and practical assistance they rightfully deserve.
However, if my self worth was developed to the extent it is currently, I would have felt pride rather than shame for my fight. I would have demanded disability parking and drove to classes when I felt well enough to attend (and I wouldn't have worried about whether people believed such measures were necessary). I would have used the disability option to skip physically attending classes and studied classmates' notes instead. I would have been excused from testing during bouts of seriously low blood volume. I would have talked to my advisors about any and all opportunities available to disabled students and networked for jobs that were willing to accommodate disability needs (even for a young woman with blonde highlights and an affinity for heels). Instead, I pretended I was the same as everyone else but just didn't care about such ambitious things like class and networking. I was embarrassed. I tell you this so that you can learn from my mistakes.
For those of you recently diagnosed, I hope my story can save you from some of the poor cognitive coping mechanisms that are classic in denial- fear of a reality you know to be true.
You are not lazy. You are a fighter.
You are the director of your life. If you convey the protagonist as lazy and lacking ambition, that is exactly what your audience will perceive.
our words and thoughts are powerful. No one but you can see who you truly are beneath illness... so if you want to connect with people on a genuine level and not suffer the isolation that is too often a natural by product of chronic illness, align your thoughts and words with the truth only you can fully see.
I remember when acceptance kicked in. It was my 21st birthday. I passed out five times that day and cancelled my birthday plans. I was short of breath from simply lying on the couch.
I cried like I'd never cried before. You know the cry I'm talking about... when snot is all over your clothes and your face gets a legit workout from all the ugly scrunching. Oh yea. We all know that face.
I finally admitted that this is my life, and I can deny it, or I can learn from it and explore aspects of myself I wouldn't have explored had I received the lottery ticket that is health.
With this new outlook, I stopped calling myself "pathetic" for only being able to accomplish one activity per day. Instead, I took that precious responsibility seriously, dedicating my upright time to yoga as physical therapy. I decided to take it just as seriously as my friends took their careers. When I could tolerate it, during my "couch time," I researched Dysautonomia until I understood the Autonomic Nervous System better than the average doctor.
(Before the clinic at Duke existed) I took my research to cardiologists who were not specialists and told them which prescriptions to write. I've discovered that medicine can be an art. It is an invigorating blend of creativity, logic, and analytics. And as the clinic at Duke will tell you, I developed a knack for diagnosing various types of Dysautonomia and developing creative and logical theories for treatment.
For years, I dedicated my necessary down time to critically reading publications on Dysautonomia. After working through justified anger upon discovering the circular reasoning, marginalization and cognitive dissonance existing there, I developed my own theories and method for physical therapy utilizing hot vinyasa power yoga (although extremely modified at the time).
For 2 years before I became a yoga teacher, my itinerary for the day was yoga... and hopefully something else, but if I could only do one thing, yoga PT was the necessary priority. I worried that my friends would resent me for not being more present in their lives. Sometimes I projected those fears into my relationships.
They didn't. They loved me and treated me like I was still smart and capable, even though I had nothing to show for it in terms of a career... even though they didn't know me before Dysautonomia. Through remarkable empathy, they saw the real me when most people couldn't... Thank you Angie, Rachel, and Emily. You have made an incredible impact on my life.
Basic hygiene was the most frustrating obstacle during this season. I needed to do physical therapy at least 4 days per week, but exercise meant my hair needed to be washed. At the time, whenever I took a shower, even with a shower stool, I had to lie down the rest of the day. So we crunched our budget so that I could get my hair washed 3 times per week at the salon, and I could simply wash my body in the shower without having to lift my hands overhead.
Now being much stronger, the ability I am most grateful for is washing my own hair without always needing to lie down afterward... and being able to get out of bed in the morning BEFORE taking daily medications. What a tiny thing to make you tear up. It's an emotional subject for me. I am now grateful for the most basic aspects of my days.
I was deeply ashamed about how difficult these tasks were for my body- only my closest friends and family knew how bad it was, and even then, I isolated myself more than necessary because of the shame.
Learn from my mistakes. Do not be ashamed. You are living a lifetime with a condition that (left untreated) is equivalent in quality of life to congestive heart failure.
You got out of bed this morning? BADASS. You did every single physical therapy session even though you thought your legs would crumple beneath you? BADASS.
Stop punishing and shaming yourself for a fight that should be admired and celebrated. Don't wait for family members, friends, or doctors to see you as you really are. See and celebrate your inner strength, no matter how physically weak you are at this stage of the journey... and if other people see it too, that's just bonus points.
Be the director of your life.