Everyone seems to have a love-hate relationship with his or her body. Whether it is an issue of poor body image or born in the wrong body, we all can relate to the feeling. For me, this psychologically would be the case later in life, but in my youth it was more of a physically broken, failed body I felt I had.
Fallon --- November 2, 2015 at Saint Luke's Hospital
This broken body was the result of a string of genetic mutations that affected my collagen resulting in a diagnosis of a rare, connective tissue disorder called Ehlers Danlos Syndrome, EDS. At 11 years old, life changed for me. I wasn’t just the stretchy girl who had “cool, wiggly” joints, but someone who had an unknown future. As physicians said, it was a “guarded” diagnosis. Everything could be fine with few limitations or within an instant it could go down the tubes and that’s it. Anxiety was coupled with fear with each unusual pain that could potentially be a ruptured artery, an aortic dissection, a perforated bowel or just a joint that was dislocated for too long. It’s the idea, could this by my last good day? Is this the condition worsening? The prognosis was different for each type and each person, but overall the treatment was simply palliative and focused around pain management.
I was stable within the condition until I reached college. Who knew stress and exertion from walking to class would start the nightmares? Many of disorders are associated with EDS, it is known throughout EDSer’s that eventually you’ll experience a complication, it's not forbidden knowledge. The first complication came in the form of autoimmune disorders for me, which was no big deal and easily handled. I was diagnosed with Sjogren’s Syndrome after losing my vision due to dozens of micro-corneal abrasions that were easily solvable after four procedures to “plug” my tear ducts and added medications. I was “fixed”.
Yet, slowly, the inability to eat occurred. I went from 120 pounds, 5 foot 9 inches to less than a 100 pounds over a summer semester. I was throwing up 10-15 times a day, no matter if it was water or a pizza. I knew the diagnosis was coming when it did. My colon already was triple its width and “paralyzed” because of the loose, fragile tissue causing an ineffective contraction, also known as no peristalsis… At 0% stomach function, I was in complete paralysis internally and diagnosed with severe gastroparesis. From that news, multi-organ failure was soon upon me and surgeries were being scheduled left and right. A feeding tube, stomach reconstruction, gallbladder removal, gastric pacemaker (2X) and several other smaller alterations to my internals from taking off dying portions of organs to removing dozens of adhesions, I survived and am here now!
At 21-years-old, it’s been a crazy ride. I thank God everyday that I can live another day with my friends and family that are full of love and support. They have been my anchor as well as my own determination to try and maintain some sense of "normal" - I try not to complain and am always pushing myself to rise above - to do more. Even if I feel crummy, I think it's good to smile and try and look and be your best, because I want to be an inspiration for other people. I don't want to worry my family either. I have dozens of people contact me weekly on Instagram , thanking me for talking about my story. I was private for a long time, but started sharing because I see how it helps others. I saw patients in the hospital when I was going medical school, and so many of them, after hearing my story, realized if I could persevere, they could as well.
After visiting Guatemala several years in a row and seeing all of the oppression, poverty, and struggle there, I told myself, I will never complain: I have food and a home, and all I could ever need. There are all of these people in the world, dying, begging on the side of the road, like the man I met who fell off a tree trying to pick pine cones to support his family. Things like that have really helped me keep life into perspective. I have grown an immense amount since the diagnosis and even feel fortunate that I could have had this pain because it has shaped me into who I am today. Last December I was given only two weeks to live. However, I have learned it is always important to realize this is our one life to live and it’s important to make the most of it. I will not let my illnesses define me!