If you're living with a chronic illness, you're in the right place.

Tuesday, January 8, 2013

Guest Blog: The Birth of a Warrior

5:46 AM Posted by Tiffany Taft , , ,
Today's entry is by Amanda Kasper, who shares her story of how her life was impacted by chronic illness in 2011, and how she is using her experience to guide her graduate studies in Public Health so she can be an advocate for those with chronic medical illness.  Thank you, Amanda, for contributing this wonderful piece to our blog.

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The best day of your life 
is the one on which you decide
your life is your own. 

No apologies or excuses. 

No one to lean on, rely on, or blame. 

The gift is yours. 
It's an amazing journey.
& you alone are responsible for the quality of it. 

This is the day your life really begins. 
..Bob Moawad..

Almost more months ago than I remember, every moment I wasn't at work looked like this. Camped out at my favorite Starbucks, merely two blocks from my vintage city apartment, I spent evening hours and weekend mornings consumed in the process of applying to graduate school. Writing and rewriting and crafting personal statements for each school, requesting transcripts, asking for letters of recommendation, doing research, finding inspiration. 

Post college graduation, I had very purposely followed my passions - the sciences, writing, helping others. Each different experiences, each filled with qualities that I wanted to combine to create my perfect job, to fulfill my calling in life. In the fall of 2010, I applied to graduate programs both in Genetic Counseling and Public Health, still trying to determine how to gracefully juggle all of the pieces I was looking for - biological, psychological, psychosocial, emotional, supportive. 

In August 2011, I sat in my first graduate school course - Health Behavior and Health Education - as part of the University of Michigan's School of Public Health. I knew I was interested in public health genetics, in the ethical, legal and social responsibilities of new technology and advancements, but mostly I knew I wanted to work with people - finding ways to improve their lives or their outlook on life or the ways in which they were navigating their own journey's. 

Well, down every road there are pathways you never imagined, dark tunnels you never planned to crawl through, obstacles that change everything. I was hospitalized three times between October 24 and December 7 of that year for severe abdominal pain, nausea, vomiting and diarrhea. I couldn't keep weight on or food down. My mom was making the trek between Chicago and Ann Arbor. My friends were trying to take care of me while balancing school and work loads. I was attempting to even attend class, let alone keep up with the work. Something had to change. In December of 2011, I transferred from the University of Michigan to Northwestern University, and moved back into my childhood home - needing a reprieve from the world, to retreat for the winter, and to in some way, nurse my health back to life.

Being admitted to Northwestern was unimaginable for me. It had always been my dream school, and the idea of joining a professional program with other multidisciplinary students broadened my dreams and my perspectives of making a difference so quickly. The first quarter was everything I could've imagined and more. I was studying the Social Determinants of Health, with a focus on Chicago, epidemiological principals surrounding the difference between health and sickness, and the laws, management and policy behind our healthcare system.

Even though my brain was enthralled and I seriously loved doing school work, my body couldn't keep up.  On the first night of my second quarter at Northwestern, I was admitted for a two and a half week hospital stay. I tried desperately to keep up with my readings, to skype into classes that weren't already being recorded, to stay in touch with my professors. Unfortunately, it just wasn't feasible. I withdrew for the quarter, with the hopes of being able to catchup during the summer. 

My health and my mental status took a drastic turn between that night in March, and the hot days of June and July. I was in no way ready for summer courses, I wasn't allowed to leave my house without a chaperone due to the amount of conflicting medication I was taking, and I was nearly always in the fetal position. Nothing dulled the abdominal pain. I still wasn't keeping food down. I felt frustrated. And maybe even a little hopeless. Trying to coordinate doctors appointments and referrals and medication schedules and being so ill all the time - I was overwhelmed. 

I was worn out, and didn't know how to continue fighting for myself.

In August, I began with a new team of doctors at Northwestern Medical Faculty Foundation, the hospital associated with my graduate university. Through a plethora of trial and error, I somehow found a small amount of relief and with less medications, more ability to function. 

Operating at about 35% capacity, I returned to school the last week of September, terrified out of my mind about the academic responsibilities in front of me (including three courses, travel logistics, an internship, and a proposal for my thesis project). Additionally, I felt as if all that time walking down long hospital corridors and waiting for nurses, trying to interpret information in the state I was in - it had changed my perspective. The lightbulb went off in my head. I knew what my calling was, and always has been. 

Through different ways in my life - I have always thrived on advocating for others. I was a peer mentor in both high school and college. I became a Court Appointed Special Advocate (CASA) in 2009, and have spent nearly the last 4 years tirelessly advocating for two very special kids in DCFS care to find safe and permanent housing while getting their academic, physical and psychological needs met. 

The internship I began this fall at the Center for Jewish Genetics provides me the opportunity to be an advocate in the community for genetic testing and new information and technology available to individuals. 

Through the last fifteen months consistently, I have experienced the symptoms and the life of a patient with IBD (Inflammatory Bowel Disease). I began to join support groups and advocacy groups and created a great number of friendships - others who were living a life that looked and felt just like mine. I started to help them think aloud through challenges with work or school or relationships or navigating the health system, so many opinions, the influences of their family or friends - and again, fell back into a role I felt so comfortable with - advocacy.

As I begin looking for my ideal job post graduation, I've realized that somehow, the pieces of my life have integrated together in a way that I never planned for. Everything I've done has lead to everything I'm doing. I'm in exactly the right place, and after a horrific and terrifying year of the unknown, I've found significant gratitude and peace in that understanding.

The research I'm working on for my thesis project has offered me the potential opportunity to continue after graduation, using grant funding from the National Institute of Health to explore the connection between women with IBD and their knowledge of and access to reproductive care. This is often a topic dropped by both GI and OB/GYN doctors, and patients are left without realizing the complex contraception issues they could be facing at any time.

Patient advocacy offers the opportunity to work with individuals like myself or my friends and others, younger, and older, facing one or many chronic illnesses, over the long term. To establish relationships. To offer trust. To be the constant in their lives. When it comes to making and attending appointments, receiving referrals, navigating the complex medical system, gaining access to medication, financial assistance, job retention, and care related assistance, patient advocates provide care, consideration and assistance to patients and caregivers who desperately need it.

As I continue to fight for more research, different medications, alternative therapies and specialists whom only communicate with each other upon my request, my own medical journey has significantly shaped my research and my career path. As I step forward into the unknown, into life after graduation and what that will mean for both my health and my job, I feel confident that my passion, compassion, understanding as a patient and as a healthcare professional, and my drive to help others will lead me in the right direction.

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. She is currently trying hard to balance life with Trigeminal Neuralgia, Interstitial Cystitis, Fibromyalgia (FMS), Chronic Fatigue Syndrome (CFS), Orthostatic Intolerance, Raynaud's Syndrome, Median Arcuate Ligament Syndrome (MALS), visceral hypersensitivity and a form of Chronic Gastrointestinal (GI) pain and challenges alongside the last two quarters of graduate school, her internship, and her thesis project. Amanda tweets at @AKasper513 and blogs over at “& this I believe” and can be emailed here