By: Amanda Kasper, Regular Contributor
Image from www.visualizeUs.com
When your life changes on a dime, you're supposed to be prepared. Not for the ways in which it will change, per se, but for the fact that change is inevitable, and the more you fight against it the weaker it will leave you.
Everyone has that moment. The one they identify with. The minute that changed them as a person, or their life as they knew it. The one that they will look back and know - the day or time or place in which a line was drawn in the sand, between what was, what you wanted, and what is, what you're living - whether by choice or by chance.
For me, it was in the fall of 2009. As the scents and colors of the season began to come alive, my body felt like inside it was dying. A few doctors later and I was assured it was nothing, that with time it would return to normal. That was nearly 4 years ago, and I no longer have any idea what normal means anymore.
Raise your hand if you're with me so far?
Here I am, 46 months later, having seen 55 medical providers across four states, having inpatient and ER records at nine hospitals, and having used/tried over 64 medications, individually and in a series of combinations. It wasn't until April 22, 2013, that I was given a diagnosis to explain the parts of my body that were running rampant. This was after multiple doctors telling not only me, but my family, my friends, my professors, and my other providers, that my disease was all in my head, that it was stress, that it was anxiety, that I simply needed a good therapist to be ‘cured.’
I will agree with the last part: anyone going through anything, especially to the magnitude I was, can benefit from a non-judgmental listener.
I got myself a good therapist.
I tried everything they suggested, my team of doctors and my family and everyone in the world my family consulted with, all friends and family and friends of family and near strangers who wanted to help, wanted to pray for me, wanted to see me healthy and thriving again. Everyone had a buy in; but it took me a long time to realize nobody had a buy back, nobody but me. And when left alone with this, I felt something familiar, the inner workings of my heart, tugging strings and carefully spitting out messages from time to time.
What I just shared with you is what I would comfortably tell an outsider about my journey. But this isn't the outside. If I really believe that I AM THAT GIRL, then there are some parts of this story that are real and raw.
There was the time almost a year ago that each of the medical professionals I saw expected me to begin working towards acceptance, knowing full well that there were five stages of grieving, and without moving through the first four, there was no way I was going to comfortably sit with and surpass the last one.
There was the day in February where I had an early morning appointment with a doctor who is all pomp and circumstance, one whom I waited five months to see. He looked at my chart for approximately 75 seconds, then at me, and said flatly “there are no more tests to run, no more drugs to try; going out of state to a reputable clinic would be a waste of time and money.”
That night was the first time in my life I've ever called the National Hopeline. I credit that night to the organization "To Write Love On Her Arms" and thank them not only for the stories and the blogs they share, but also for the information, the hearts and souls, and the compassion and passion in the strangers that kept me alive that night.
For four years, I chased a diagnosis. I wasn't anyone, anything I could understand until I could comprehend what was going on with my insides. I wish this was a joke. I wish I could tell you the punch line.
This isn't a story like that.
Just over three months ago, I was diagnosed with Mastocytic Enterocolitis (ME), a rare disease as characterized by the National Institute of Health. My internist (along with most of the ER staff and hospitalists I have seen since then) had never heard of this condition.
I've read every scientific paper available on ME. Currently, there are less than a dozen. I have learned all there is to know about my condition today; however, for my sake, and the sake of others who sit wedged tightly in-between these tentatively drawn lines alongside of me, I hope with all of my heart and wish on every shooting star I see that this number continues to grow, and soon.
ME is a chronic, lifelong illness. There are a few treatment options, but there is no cure. This disease is mediated by food, and the body's reaction to food, although there is not enough knowledge out there to determine which foods are right or wrong, which diets work or don't. My family and I are still very much in the trial and error phase.
Since receiving a diagnosis, I finished my last quarter of graduate school, completing my Masters Degree on time, and with honors, despite transferring schools, withdrawing for a quarter, and missing many class periods.
Despite a weakened body just five days out of the hospital after a incredibly difficult stay, with a broken foot and kidney stones, I crossed the stage at Northwestern University’s 150th Commencement Ceremony in a wheelchair, wearing my cap and gown, and for the first time in I can't remember for how long, I wasn't just smiling on the outside. I was glowing on the inside.
Just since my diagnosis date in April, I have had 4 ER trips, 3 inpatient hospital stays, kidney stones, broken bones, infections, pneumonia, bronchitis, medication withdrawal, a new and very tentative diagnosis of a rare neurotransmitter disorder, and in truth, some fairly deep depression and anxiety. Instead of sending my resume to my dream job positions, I've been collecting documentation to apply for disability benefits, coddling my creative side to keep my spirit alive, writing when I can, and remembering that this isn't my forever.
How do you manage? How do you convince yourself that this moment is just one moment and not all of the moments that follow will look or feel like this one?
I'd love any suggestions. I'd also love for you to know that no matter what your story sounds like, no matter if it intersected at one or many points of my story, you are not alone. As THAT GIRL, we walk the walk together.
About Amanda: Amanda Brooke is a writer, reader, quote lover, CASA advocate, and non-profit believer; seeking space as a patient advocate, public health guru, lifelong learner, passionate lover, and irreplaceable friend. Amanda tweets at @AKasper513, and blogs over at Below The Radar, a community she co-founded to create “the opposite of loneliness” for chronic pain and illness warriors, fighters and