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.
###
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.