I had my first dysautonomia event when I was 4 or 5 years old, and then sporadically throughout my childhood. I remember being too young to really explain how I was feeling- even now it’s hard for me to verbalize what it feels like when I am having a “bad” day. But especially when I was younger, I remember being so frustrated by not knowing how to explain to my parents the sudden nausea and cold sweat that would hit me, the blurred vision that came on quicker than I could comprehend and the feeling that if I didn’t lay down right then- no matter where I was, that I was going to drop. We began referring to them as “episodes” and what started as occasional events, eventually took over my life. I went from having a few a year, to several a day and praying for good days in between so I could be normal. Over the years, I lost any sense of warning and was just fainting without notice. But the fainting wasn’t as bad as the splitting migraines, vomiting, vision problems, vertigo, hot flashes, extreme brain fog and debilitating fatigue. I was so miserable that we tried anything and everything. Every medicine combination and IV therapy..tried botox, nerve blocks, went on the waiting list for a service dog, got acupuncture and biofeedback, traveled to the Mayo Clinic for weeks at a time, got a pacemaker put in, changed my diet to eliminate gluten and increase salt , wore compression hose, saw a chiropractor, just everything..with little long term relief from anything. I pushed my way through high school by the grace of my Vice Principal who put me on a homebound plan that allowed me to come into my classes as a “guest” whenever I felt up to it- getting rid of all attendance requirements. I went to college with a stubbornness to just forge through and despite immediately being sick, I was determined to stay in the mountains and finish the year. My mom pretty much moved into my dorm room or a nearby hotel and, with my boyfriend (now husband), we would push and bully my body to do things it didn’t have the ability to do. My body did not want to make it to lectures or labs or sorority recruitment, or anything else that I was begging to be at. I worked so hard in high school to have these opportunities and I was crushed when I made it to college only to be met with the same resistance...But in my darkest year I learned that sometimes you have to listen to your body and say enough. After that first year at Appalachian State- I have learned a lot about when to push, when to rest, and how to get what you want despite the path looking impossible. I finished my degree from Appalachian State.. just like I wanted- but I did my last 2 years from home, in Charlotte, via their online program. It allowed me the flexibility to work from my bed, and go to the doctor whenever I needed to, and really put my health at the top of my priority list- for probably the first time ever. And since then, things have been better. When I graduated, I was overjoyed to get a job working for United Way. It seemed like a dream come true to be able to spend my “good days” giving back, addressing real issues, and repaying the kindness I’ve received at my low points. But after too short of a time, my body said no. No to office germs, early mornings and long days on my feet, no to normal work stress and a full schedule. So again I pulled back and was forced to say goodbye to something I desperately wanted. I’ve always struggled with what I want to do versus what my body will allow me to do- and I probably always will. But I have found that the greatest blessings follow my set-backs. This company, has been one of those blessings. While I was giving my body time to recover, my sister and I worked together to form Of Mindful Manner.
Of Mindful Manner was born to shed light on the reality of what it’s like to look “healthy” while feeling anything but. To recognize the private or public struggles of having a body that betrays you- and a society that doesn’t always understand. If you have taken the time to read my story or browse our website, I thank you. If you have purchased something from us and expressed an interest in helping champion our efforts, I am deeply moved. Together, we can make this world a more mindful one.
(+ side note: If you are the significant other, family member, or friend of someone with an invisible illness- we couldn’t celebrate our good days or make it through our bad days without you. I know sometimes it’s as hard on you, as it is on us.Thank you for being the necessary and understanding care givers, chauffeurs, and therapists...you are all angels to me)