Describe a typical day in your life. What do you dread the most? What do you look forward to?
These days look much different than I imagined them to. They look much different than I had planned for, different than I was used to, different than what I want. But you see, I don’t have much choice in the matter.
For three years, I’ve battled unbearable abdominal pain and uncomfortable GI symptoms. I’ve seen a slew of doctors, undergone most every test in the book, tried a variety of different medications, and yet still am without diagnosis, treatment plan, or symptom relief. On March 27th, 2012, I was driven to the emergency room. My mom was so worried – I hadn’t been able to keep down food in days, and most of the time I was curled up in the fetal position. I was admitted that night, and proceeded to spend the next 15 days inpatient – undergoing tests, coming off of and on and again off of solid foods, receiving IV fluids and medications; however, I was released without an answer, without a plan, and with too many prescriptions. Since then, my life has paused. Graduate school has paused. Being social has paused. Driving has paused. My life no longer looks like a normal 26 year olds. My life no longer looks like something I recognize. My life… is on pause.
But, I have made it through each day since then. My typical day starts at varying times, depending on if there is a doctors appointment or a blank schedule. Sleeping is inconsistent, variable and challenging, and so the days I don’t have to be up, I often stay under the covers, even if I am awake or dozing in and out of sleep. I get up, brush my teeth for two whole minutes (my electric toothbrush has a timer, and it sings to me when its time to shut off ;)), I stand on the scale and record my weight in a small notebook, and I open my computer.
I wade through email, check the updates on Facebook and Twitter, and tune into a variety of social media sites and incredible blogs. Being that I spend the vast majority of my time home alone in the quiet, I’ve begun connecting with a variety of individuals online – people who experience GI symptoms, who have been diagnosed with IBD (inflammatory bowel disease), people who are facing chronic illnesses, people like me, whose lives have changed drastically at the mercy of their physical health, and are trying desperately to adapt in any way possible. Lately, my next step has been to open Microsoft Word, where I spend a couple hours writing, editing, and re-reading the first draft of my memoir. I’m determined to see something good come out of all of these challenges. This is my favorite time. The time at peace with my thoughts, my words, the something I’m creating.
The rest of the day involves varying amounts of time on the phone, on the internet, watching TV, catching up on my Netflix queue or writing letters (yes, I do mean with a pen and paper – I keep the post office (& the Hallmark store) in business!). Nighttime wind-down involves reading (currently in the middle of: this I know, notes on unraveling the heart), and eventually, I find myself staring into the face of a brand new day.
Amanda Kasper is a writer, reader, quote lover, CASA advocate, and non-profit believer, seeking space as a lifelong learner, passionate lover, and irreplaceable friend. Amanda tweets at @AKasper513 and blogs over at “& this I believe”