I
do not need to be admitted to this University.
That’s right, you read that correctly. I will find a way
to realize my goals whether I am welcomed to this school or not.
Let me explain by sharing how I arrived at this point. At twenty-six
years old, I have a job that has afforded me the opportunity to
travel to many new and exciting places. I get paid very well for
my career field and level of experience. My current employer even
paid for all of my undergraduate student loans as a perk for committing
to the company for three years.
And I am about to throw it all away to pursue a job in a career
field that I had never previously considered before February 19,
2005.
On that day, my new husband and significant other of nine years,
Eric W. Shaffer, was diagnosed with a relapse of Acute Lymphocytic
Leukemia. This was his second experience with the disease; however,
assuming the role of his sole caregiver was a new one for me. We
had been married for nine months. Eric was twenty-three, and I
was twenty-four.
Cancer is a terrible disease for anyone it touches. As a newlywed
young couple, we quickly found that there are few other diseases
that devastate the afflicted so thoroughly. For those patients
who are lucky enough to beat cancer, overcoming the physical disease
is just the beginning as they then face co-pays for months and
months of medical care, prejudice in finding new employment post-treatment,
and the lingering secondary effects of harsh but necessary treatments.
Eric and I also learned that the devastating effects of cancer
are compounded greatly when young adults are affected. Due to the
limited career choices that I had after receiving a B.S. in Developmental
Psychology, I accepted a government internship on the island of
Oahu, Hawaii. Five thousand miles away from our families when he
was diagnosed, Eric and I were forced to end the honeymoon early
and negotiate a confusing system of specialists, referrals, and
prescription-drug benefits. While learning to clean Eric’s
chemotherapy catheter and giving him growth-factor injections,
we often had to deal with being treated differently by the hospital
staff as the youngest adult patients on the floor.
Eric and I had good health insurance through my job, but were
still hit with $300-$400 co-pays each month that were a struggle
to pay with my entry-level salary. When we went to our local Social
Security Office to apply for disability, Eric was immediately turned
down for all benefits when it was determined that he hadn’t
worked enough to accumulate the necessary forty S.S. work credits.
(When we asked the representative how Eric was supposed to have
worked enough to obtain the credits while having cancer twice since
1999, just graduating from college, and only being 23 years old
at the time of application, the answer was, “I’m sorry
that there is no policy to address your concerns…please
write your Congressman.”)
When the news came that we would need to go back to the mainland
for a bone marrow transplant, the stress of getting our few possessions,
our cat, and ourselves to Maryland was added to the mix. The pressure
of performing at my job, acting as a caregiver and advocate for
my husband, making arrangements for the move, finding a new job
in the vicinity of Johns Hopkins hospital, keeping our family members
and friends posted on Eric’s condition, and caring for household
duties took its toll on me. I struggled to do it all and felt that
I was succeeding at nothing.
However, in meeting other 20- and 30-something cancer patients,
I realized that Eric and I were luckier than most. We hadn’t
fallen into the gap that many people our age experience. One of
us had gotten a job with a full benefits package immediately after
college. Young adults just out of college are the most likely to
be uninsured or underinsured-too old for their parents’ plans
and not established in careers with full benefits. Also, our health
insurance was willing to pay for Eric’s bone marrow transplant,
no questions asked. Many leukemia and sarcoma patients have their
claims denied after cutting-edge treatment that may prove to be
life-saving is deemed “experimental.” Despite this
supposed “luck,” Eric and I relied on charity at times
for assistance with paying our co-pays, prescriptions, and medical
equipment expenses not covered by insurance.
While Eric and I were thankful for the breaks we got during our
journey with leukemia, the added difficulties of being a cancer
patient in early adulthood had resulted in an overall disheartening
experience, leaving a bitter taste in our mouths about the condition
of health care in the United States. Additionally, we were not
able to figure out what Eric would have told potential employers
about the significant amount of time after college when he wasn’t
working. While employers are not legally permitted to ask specific
questions about an applicant’s health during an interview,
we feared that Eric’s leukemia would have had a negative
impact on his career and professional opportunities for the rest
of his life.
My husband and I were dealt a final, crushing blow when we received
the news that we would not be able to have children together due
to side effects from his years of chemotherapy. A pre-marrow-transplant
fertility test in July 2005 confirmed that, at the ages of 24 and
25, we would never have the opportunity to have our own children.
Eric’s initial leukemia treatment, in 1999, was at a pediatric
hospital that did not explain options for preserving one’s
fertility to its young patients.
However, the burdens of employment and lost fatherhood are no
longer of concern to Eric. Eric W. Shaffer, my husband, partner,
and best friend, passed away on March 17, 2006 from complications
caused by his chemotherapy treatment. He left behind his mother
and father, a twenty-five year old widow, and hundreds of friends,
family members, and acquaintances whom he touched and inspired
simply by staying real and fighting until the end.
Six months after my early entry into the world of widowhood, I
am still finding it to be a strange and bewildering place. Being
a twenty-something widow is very similar to being a young adult
long-term illness patient: there are few to no resources available
that address the specific needs of the population. The general
public does not know how to react to a twenty-six year old in my
situation; I have experienced avoidance, platitudes, and downright
ignorance when I choose to share that “no, I’m not
single, I’m a widow.” As I make my way through this
dark time, the urge to hide my status from the world and avoid
the pitying looks, the prying questions and the well-meant, but
misguided remarks grows stronger and stronger.
But sometimes, a seemingly harmless object or event will trigger
a string of memories to go off like firecrackers inside my head,
and the grief spills out into my public and professional lives.
Try as one might, it is damn near impossible to portray to the
world that everything is fine while one is still deep in the throes
of grief and healing. While I have publicly displayed my grief,
I’ve also found that it is absolutely necessary to remember
the person who passed away in terms of the positive contributions
he or she had on other people’s lives. And for that reason,
I have chosen to soldier onward and live to honor Eric’s
life, instead of perpetually mourning his death. I am becoming
a Medical Social Worker. In this vocation, I hope to make the world
a friendlier place for cancer patients and young adults whom are
dealing with long-term illnesses, end-of-life planning, and related
issues.
In honor of my late husband, the love of my life, and young adult
cancer patients and widow(er)s everywhere, I REFUSE to let my grief
control me. I am mad as hell that there are few resources for twenty-somethings
faced with serious illness and death. It isn’t fair that
public, charitable, and corporate spending for cancer research
is not distributed equitably—breast cancer, a highly treatable
cancer that is not even the leading cancer killer of women, received
the lion’s share of both research and patient support funding.
My goal is to challenge the treatment and resource inequities until
I can be confident in the knowledge that no other young adult patients
will have to endure an experience similar to ours.
To achieve this ideal, I am currently working on two separate
fundraising campaigns in memory of Eric. I’m also working
on developing materials on grieving, written specifically for young
widows. To further awareness of treatment and funding inequities,
I write for several websites, including an appearance as a featured
author on The Huffington Post (huffingtonpost.com). And I plan
to shout and write and scream until research and patient support
funding is more equally distributed, young adult patients of long-term
illnesses have more of a support system, and young widows no longer
feel like they have to hide their marital status for the sake of
others’ emotional comfort.
It is for Eric that I am changing my profession, my goals, and
my life. It is for Eric that I hold onto my dream of kicking cancer’s
ass.
And so, I will become a medical social worker. My determination
is fierce and I have a motivator that is heart-breaking, infuriating,
and inspiring. I will find a way to achieve this goal even if it
means applying to every MSW program in the country.
Will you help me in my quest?
Amanda
Shaffer , Blogger. Caregiver. Graduate Student. Widow.
Contributor Amanda Shaffer has written and lived the experience
of cancer for several years. She received a B.S. in Developmental
Psychology from the University of Pittsburgh, and is currently
in the process of pursuing her Masters of Social Work.
Amanda has overseen youth development programs in various contexts
and locales, from teaching literacy to prison-bound teens to directing
social programs for military youth.
After the loss of her husband to leukemia, she’s studying
to become a medical social worker. She chronicled her husband’s
bone marrow transplant at cancer,
it’s not just an astrological sign anymore, and currently
writes at The
Cat Lady. and BlogHer.
View all
of Amanda's WidowSpeak Blog posts.
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