A Year Post-Diagnosis: Reflecting on privilege, equity, and our common humanity

This week I finished my last round of chemotherapy for a recurrent, inoperable brain tumor.  It has been exactly a year since my doctor told me my cancer is back.  I have been trying to reflect on this past year, searching for the right words to encapsulate my experience.  What I keep coming back to though is a question that has weighed down on me since the beginning of my treatment, “Why me?”  Not questioning why I have been dealt this hand of living with brain cancer, but rather, why are the cards stacked in my favor?  Why have I been so privileged to receive some of the best medical care in the world?  Why, in the view of society, is my life valued more simply because of the circumstance in which I was born into?

This simple truth of privilege and circumstance burdens me, but is also one of the greatest lessons I can learn from my experience with cancer.  My story would be very different, perhaps shorter, if it was not for the many privileges I have benefited from.  Over the past year this privilege has taken many forms.  When I had a seizure in Singapore, instead of waiting in the overcrowded and understaffed public ER, I was able to get a transfer to the best private hospital simply because I could afford travel insurance.  Within weeks of receiving my diagnosis, I was meeting with some of the best doctors in the world because of my well-connected primary care doctor who I have access to through my mom’s job.  I was able to receive proton beam radiation, a $200,000 treatment, because I have access to my parent’s American private insurance.  Throughout the past year of treatment, I have had both housing and financial security, all while not being able to work, because I have loving family and friends with the means to support me.

I am not discounting the struggles my caregivers and I have had to endure over this past year.  In addition, I understand that many of my privileges stem from the hard work my parents have put in to be able to support me.  Nevertheless, I would be remiss to not recognize that the opportunities I have been provided are a result of the circumstance I was born into.  I have experienced the best of what medical care has to offer.  It is the type of care that all people should have access to, yet in reality, few ever receive.  During my journeys abroad in Indonesia and Madagascar, I have witnessed many inequities people face in regards to healthcare access.  My circumstance and the experiences of the stories I am about to share are polarized by an unjust divide of opportunity.  I do not bring up the following stories searching for sympathy towards the communities I have lived with because that can only go so far towards creating change.  Rather, I hope these accounts, in the context of my own story, can epitomize the gross injustices created under a status quo where healthcare is a privilege and not a right as well as encourage an outlook that recognizes our common humanity.

Before my recurrence, I lived in Bali, Indonesia, an island that has a stark poverty divide between the tourism areas busy with foreigners, and the rest of the island.  One night, while driving back home from an event in central Bali, I came across a crowd surrounding two men who just moments ago were thrown off their motorbike.  Using my EMT background and novice language skills, I attempted to help the men.  One of them had a clear deformity in his lower leg, a possible sign of a fracture.  I tried to explain that they needed to go to a hospital, but they replied they were farmers without insurance, so couldn’t afford a hospital bill.  Instead, they told me they would sleep on a bench at the side of the road overnight until the local free clinic opened.  On my drive back I thought to myself, what if I was in that accident?  I would be able to call a private ambulance and get treated immediately at one of the hospitals meant for foreigners.  I questioned, why in Bali and throughout the world do we have that juxtaposition of hospitals meant for foreigners, often better staffed and equipped, compared to those for locals?  I think back on the quick response I received when I had a seizure and wonder, what makes me any different from those farmers that provides me better access to medical care other than the fact that I was born in the United States with financial means?

In 2011, I worked on marine conservation projects in a remote fishing community of Southwest Madagascar, one of the poorest countries in the world.  On my time off, I provided English lessons for a couple teenage boys I had befriended.  One of the boys, just thirteen years old, came up to me knowing about my medical training, and showed me deep wounds in his leg from several cuts that had become infected.  I had a well-stocked first aid kit with antibacterial ointment and bandages, so I patched up his leg.  A week later, more kids with similar wounds came by my hut asking for Neosporin and a Band-Aid.  These were two simple medical products I completely took for granted, but were in high demand to keep their wounds clean.  I eventually ran out of supplies and had to turn the kids away.  My organization had originally instructed us all to not give out our own personal medical supplies, and I had chosen to do the opposite.  Part of me felt bad and just wanted to help.  The other part of me took great issue with the mentality of those instructions.  It is a mentality of cost effectiveness that pervades most of the western world’s development mindset.  It is based on the alleged idea of practicality, but inherently requires valuing people’s lives differently.  I can’t help but think to myself, what if I was one of those kids?  I was originally diagnosed with brain cancer at 12 years old.  My medical care was not determined by “cost effectiveness”, rather, over the past 12 years of having cancer, I have had hundreds of thousands of dollars in treatment and monitoring invested in me.  Imagine how much Neosporin and Band-Aids that could buy.  It makes me wonder again, what makes me any different from those kids other than the fact that I was born in the United States with financial means?

Every year, thousands of people die around the world from cancer simply because of an inability to detect it in time.  While helping assist a class at Harvard this past summer, a student from Indonesia told me about her father who was also diagnosed with a brain tumor.  He unfortunately passed away because they were not able to get access to an MRI or treatment center until it was too late.  Her father and I had a similar diagnosis, but two completely different fates.  What makes me any different from her father?  What “just” rationale, and I emphasize “just,” explains me being able to have a future to look towards simply because I had the means to get treatment?

Paul Farmer has said, “The idea that some lives matter less is the root of all that’s wrong with the world.”  In light of my experiences and the recent terror attacks sparking up around the world, I could not agree more with his statement.  This past year, cancer has stripped me down to my vulnerable core, forcing me to reach out for help in order to survive my diagnosis and keep pressing forward.  I have been incredibly fortunate that within the world’s mosaic of differentiating opportunity, I have been privileged to receive support with open arms.

Following the Paris attacks, I, like many others, have been appalled by some of the fear mongering reactions towards taking in Syrian refugees.  These people have been stripped down to only what they can carry on their backs, running from the same, if not more, persecution that has driven the Western world into fear.  How can we turn our backs on these people?  What if we were running for our lives and the lives of our family?  How would you react towards people turning their backs on you in the name of national security when your only crime was being born into conflict, having darker skin that decreases your worth in the eyes of the western, predominantly white, perception?

In two weeks I will be in Paris at the United Nations climate change negotiations (COP21) with a U.S. youth delegation from SustainUS.  In light of the recent attacks, some have questioned holding this negotiation, or at least civil society’s participation in it, but I am convinced that moving forward with calls for climate justice and sustainability in the negotiations is more pertinent now more than ever.  The endeavor to get nations to agree to a binding, ambitious climate treaty goes beyond details of parts per million or degrees Celsius.  Those numbers, such as a limit to 1.5oC increase in global temperatures, translates to very real impacts affecting communities around the world now and in the future.

Among the most vulnerable communities, climate change exacerbates issues of health and conflict.  The past few months brought some of the worst forest fires throughout Indonesia, likely one of the greatest environmental catastrophes of the 21st century.  These fires not only caused massive environmental destruction and release of carbon dioxide emissions, but have threatened the respiratory health of hundreds of thousands of people.  Throughout the Pacific Islands, and even in Alaska, communities are already being forced to leave their homes as the sea level rises.  Even the conflicts throughout the Middle East and Africa that have resulted in one of the most drastic refugee crises were intensified by climate change as severe droughts depleted resources, pushing rural populations into urban centers.  If we truly want to help alleviate the refugee crisis, we would be serious about dealing with climate change.

The root of problems related to healthcare equity, refugees, and climate change all stem from humanity’s greatest flaw:  our willingness to value some lives less than others.  The solution to all these issues are complex, but one simple step we can all take in the right direction is to search for a greater sense of empathy.  To ask ourselves, what if I was that kid with the infected wound, what if I was a refugee, what if I was forced to leave my home due to sea level rise?  It is important to ask ourselves this before we act because the only thing that separates reality from these hypothetical questions is the fact that we have been born into a circumstance of privilege.

Living with brain cancer has instilled in me a deep sense of empathy, but not everyone has to have a life threatening illness to gain a new perspective.  We all face struggles in our life, and it is important to not discount our own challenges because others may be going through worse.  We can use the difficult moments though to recognize our common humanity.  To see each other beyond the perceived divides of nationality, race, or religion.  To understand ourselves as part of a larger whole, a global citizenry, who all deserve an equal shot at a life filled with peace, health, and love.  As John Lennon wrote, “You may say I’m a dreamer, but I’m not the only one, I hope someday you’ll join us, and the world will be as one.”  I believe we can reach this vision.  I hope you do too.

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8 thoughts on “A Year Post-Diagnosis: Reflecting on privilege, equity, and our common humanity”

  1. Jeremy, you are an amazing young man and an inspiration. I have forwarded your blog to my grandsons, Avi and Jeremy Gold so that they may learn from you.

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  2. Wow! This is so true — good for you for working to do something about it. This situation also exists here in America – we have a huge difference between the “haves” and the “have-nots” here as well. A recent book — “$2.00 a Day: Living on Almost Nothing in America” is eye-opening on this point as well.

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  3. Dear Jeremy, I just came upon your blog and I treasure your eloquent writing and beautiful thoughts on living with brain cancer. I just began a blog myself, as I am a 2-time brain cancer survivor. I share in so many of your opinions and experiences. I look forward to reading much more!

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