Advocating for Aleigha

by Aleigha Rankin

Writing an illness blog, running an advocacy page, and raising awareness in order to survive isn’t something I ever saw myself doing. I have never been good with words. More often than not, others are the ones finding words for me, finishing sentences after my long, awkward pauses. But as of September, 2014 when my symptoms first began to show their ugly faces, there was no longer anyone to speak for me. Extraordinary times call for extraordinary measures and these are most definitely what I would consider to be extraordinary times.

Before I got sick, I had just about everything I wanted. I was working toward a degree in graphic design, pursuing my dream of becoming a photojournalist, coaching gymnastics and was, for the most part, healthy. I was constantly moving. Who knew where my next great adventure would begin or lead. I loved the outdoors and I had a great group of friends. What more could I have asked for? Then, on my way home from the fair with a friend, the pain in my spine began quickly becoming so unbearable that I actually passed out on the way to the hospital. Long story short, it was the night the life that I had come to know and love, essentially ended at the age of 21.

Since then, my life has morphed into something that I had never even considered to be a possibility. The diagnosis process is still in the works, but so far I’ve racked up a bunch of rare, incurable, chronic and life-altering diseases such as dysautonomina, neuropathies, essential tremor, neuromyotonia, and gastroparesis. I’ve been passed around from doctor to doctor; most not comfortable enough to take on my case, others having inadequate resources, and one even having the audacity to tell me that it was all in my head.

Hospital trips have become as frequent and normal as going to the grocery store, needles no longer phase me and long phone calls with insurance are becoming a daily activity. My body is launching a full scale attack on itself on a daily basis, leaving me in a constant state of pain, dehydration, malnutrition and exhaustion whilst my digestive system, urinary system and autonomic nervous system fail to keep on moving on. Add an intense cocktail of medications and treatments and you’re left with a very foggy and beaten down version of myself. But, “You go on by doing the best you can. You go on by being generous. You go on by being true. You go on by offering comfort to others who can’t go on. You go by allowing the unbearable days to pas and allowing the pleasure in other days. You go on by finding a channel for your love and another for your rage.“ So here I am. The new me: The rare illness fighting, life-loving, awareness raising, cane toting, full-time patient.