Privilege on Parade

When my alarm sounds at 5:30 a.m., I am already awake. I lie staring at the ceiling, reaching over to pop the snooze button into silence. I have one hour to go running, then shower before you get here, before Liz wakes up and comes with us to the next round of appointments at the hospital.

My hair tumbles in waist-length waves as I jog up the road. I don’t tie it up when I run, Ma. It feels better this way, the wind rushing through it, carrying with me all the places my hair and I have been together. Freedom is running, Ma, running even when you’re not being chased. Running reminds me of Dad, and this is what I do when I need him. I do it at least four times a week. This morning, I do not listen to music. Instead, I think.

Did you know that at the ranches where fighting bulls grow up, sometimes lone bulls escape the herd by accident? And, by way of misadventure, they find their way into foreign villages and are known for their panic that causes their rampages, leaving in their wake death and enormous destruction.

In these years, this is what my rampages have consisted of: feet pounding pavement while the rest of the city still sleeps, the beat of my heart against that tumor in my chest, the burl of rage that has condensed into one concentrated location. These rampages are socially acceptable, contained, calculated.

Some of my rampages, though, have been much different. In my younger years, they perpetuated a cycle damaging to its inhabitants. The villages I tore through were torn through as a wild animal; a panicked and feral bull. I came with my drunk driving, selling drugs, fighting, damning pain upon any place that wasn’t my home because I never had one. Those rampages were when I was at my worst, Ma, but let me tell you when they were at my best.

I am twenty-three. My age does not matter here as much as the year — 2013. I am running along streets with all the other Obrunis, and for a second it just feels like any other 5k, until I turn a corner and see the gutter, the food stalls, the chickens and the bleating goats. People are not clapping like they do on the cement curbs at the other races at home. Instead, they stare at us Westerners who run for recreation; Westerners who look silly to locals. In a place where manual labor is high, everyone exercises daily — and not out of want, but of need. To support their families, to buy food to eat, through the apathy-induced heat, through the broiling hot-car-engine congestion, dust and heat radiating off of vehicles — for them it is mandatory. For us, it is a luxury.

I have been living in Ghana for four months now, and on top of teaching I volunteer with a group of women who mean well — and by “mean well,” I mean try to remain conscious of the impediment we make on the cultural practices of a country foreign to us when providing resources to encourage a westerner’s idea of sustainability in their home.

Every woman who is a member, myself included, pays a membership fee. This money goes to mimosas and brunch and networking events I do not entertain as much as I do our site visits. On site visits, volunteers go to different non-government organizations that have applied for financial assistance to bolster their mission. We have visited schools, churches, homes for women and children ostracized from villages due to sexual violence and shame that comes with it, but our latest project is one I had more of a personal hand in than usual: Ghana’s first ever Run for the Cure.

Neighboring Nigeria had their first Run for the Cure in 2012, and Ghana has since taken an interest in this mission. I had asked Dad if he might help me put together a basic curriculum that would discuss early detection, how to give self-breast exams, what lumps feel like and the different sizes they come in — every bit of knowledge others may benefit from that is not as well-known here as it is in the United States. But really, Ma, but what do I know? I do not want to steer these women wrong with my flawed semi-education. So, since Dad used to be the chairman of Susan G. Komen, I asked him if he thought it would be a good idea to reach out to them and see if they could provide the Ghanaians with physician-approved self-breast exams among other resources, but I never heard back from the Komen foundation.

Ghana carries on with or without Susan G., Ma, and so do we. And this day, the Ghanaian women who have survived take to the stage after we have all run our race. They swish in pink tutus, adorn bright pink bras outside of their traditional Ashanti dresses, and with pink hats and pink shoes and pink head scarves, they celebrate this color like they celebrate their surviving its wrath. There is significance in their publicizing not just their recovery but their battle, because in certain places of the world it is still believed that breast cancer is contagious. This is due to the lack of scientific information that would prove otherwise; information that most of the world does not have access to. And so, when it comes to these women, their families fear catching this disease, and these women, well, they still have to fight — just all by themselves. Certain places lack certain resources because there are other needs — basic needs — that are perceived as more readily available due to a higher understanding of them throughout the world. We’ve got a long way to go with cancer, Ma.

These women celebrate because they are breaking stigma when they break silence, and now more women know that this disease is not contagious, but only the inspiration to fight it is.

We runners, after the race, all scavenging for purified water the children sell out of water sashes, stop in our tracks, forgetting the water, forgetting the sustenance, forgetting even the heat when we are told we raised enough money for the first mammography machine Accra has ever seen.

***

Here, and everywhere else in the world when it can help in any way, my knowledge is a privilege. My exposure to this disease is a privilege, my proximity to this disease is a privilege, and even how I was diagnosed with this disease is related to that privilege.

Let me explain.

Because I had two parents with two incomes, we eventually became stable enough so Dad didn’t have to work two jobs, and neither did you — at least, up until you left.

Because of Dad’s education, he eventually found a job that led to better pay with fewer hours, that led to more free time. With that free time, he began volunteering.

He worked so hard with Susan G. Komen that they made him a chairman, which led to a heightened awareness of new developments in the sciences around cancer, which led to the acquisition of knowledge he would not have had otherwise: the found link between BRCA1 and breast cancer, and how one precedes the other.

This then led to Dad pursuing genetic testing, which led to his learning that he is in fact a carrier. This led to his daughters getting tested, led me to the awareness of my predisposition, then my self-breast exams. And then there was the finding of a lump, that led to catching it; catching it early enough to have a chance at beating it.

See? It all leads back to privilege, Ma.

***

The biggest fear I have ever had is the fear I feel when I know I am alone. I have found it hard to believe that there is anyone in the world who has felt more alone than me, and I could be wrong, but I can’t help but think that a woman suffering in a country with minimal conversation around breast cancer — a country void of the puns, the fundraisers, the incessant pink-washing here in America — might make one feel even more alone.

Imagine your family wanting to protect themselves from you? I can, but not like this. Not like riding a tro-tro, all the while hyperaware of a dirty secret growing inside you, one that could infect people around you, one that grows in your chest. Not like relinquishing the tro-tro because you believe your very presence compromises the well-being of others around you.

So let us assess the counterfactual, Ma. Say a girl, who grows up with one parent, who also has two siblings, has a parent that does not have either the education or experience to work for anything other than minimum wage.

If this were the case, that parent would not have the privilege of doing volunteer work, because they would not have the privilege of extra time, because they would most likely be working two jobs to make ends meet. And this parent may be aware there is a history of breast cancer in their family — and may have even heard, by way of the trickle-down system, information from the elite to the more marginalized — and may be aware that genetics play a part in the risks of inheritance. But this person does not have the same access to education and recent scientific development that someone affiliated with an organization does. And if they don’t have the time shuttling back and forth between employers and kids’ schools, they likely do not have the time to do things that prioritize their health. If that is the case, they certainly won’t have the capacity to read the newspaper or watch documentaries in the search for what might help them toward early detection.

Dad had the time to volunteer because you were still around to watch us. You didn’t leave until he had already made connections, learned about advances that would, with breast cancer rampaging through our family, advance our survival. But this single parent spoken of above didn’t have that option, because they were always alone. They may never know the variants to get tested for, they may never know if they are a BRCA1 carrier, and in turn would not know that their children have a higher chance of developing cancer. This parent may never get a chance: to learn how to administer self-breast exams, to find something, catch something, before it’s too late.

***

I do not know what every aspect of my life would look like had you been the one who stayed, but I know this: how much more at-risk I would have been.

Let’s imagine that the parent that stayed with the children is a woman who is a BRCA1 carrier, who has a higher chance of developing breast cancer herself, but the parent will not know until one of her daughters is diagnosed with breast cancer. This daughter has no knowledge of what to do because she does not have a parent well-versed in breast health — because she did not have a parent who ever had enough time to become well-versed in breast health.

Let’s take one more step into the world around us and say that this woman is black or Latina. She has a higher chance of developing triple negative breast cancer, the most aggressive breast cancer aside from metastasis, at a more rapid rate than a white woman, and so do her daughters. She is already at a disadvantage as a woman, as a single parent to daughters — further disadvantaged by being a non-white woman, and even further still by being on the hardest, sharpest edge of this disease.

And she does not have time, in between taking care of three kids, riding the bus to and from two jobs because the car is in for repairs with a mechanic who will soon call to give a quote of too much money, and this woman will have to choose between transportation or food for her children. Women who have been hungry like her, Ma, will always choose food.

None of these daughters are me, but these daughters do exist — just outside of our periphery. Some peripheries, like health, like genes, cannot be stepped outside of, even if it constitutes life and death.

Had I been as informed as Dad was, I would have known that I was eligible for prophylactic surgery just for being a BRCA1 carrier — but I was busy. I was busy running around other countries; I was busy hiding from what was predisposed inside of me.

***

And as I ran that day in Ghana — a region of the world with developing medical disadvantages— like I run this day — a region of the world with the best medical care — I am thinking of the distances I write to you from— ones not confined to a 5 or 10k, half-marathon or full.

I write to you from distances like the space between your raised hand to my cheek, your fists in my hair from the stairs to the hallway. The length of time I sat on the bathroom floor with soap in my mouth that you made me chew, the length of time I kept chewing because you forgot about me. I write to you from the arm’s length you held me at the first time I saw you in a hospital — your smile a product of Prozac, not pride, trying to figure out who I was. From the other end of the shotgun that your father threatened me with when I went to get my stolen car from Blossom Road; from the lens affixed to the 12 gauge that my ex-boyfriend taught me how to shoot back. I write to you from the distance of what separated us, accidental and then intentional, subtle and then violent.

I am writing to you from the length of time it took me to accept that I had a lump in my chest, the length of time I waited to get it looked at even though I did not believe this was something benign. And maybe that was why I waited. That privilege so ingrained in me I thought I could wait, because here in the States, we have enough resources to gamble in this way. Maybe that was the reason for this subconscious aversion; this refusal to step out of the periphery and into the forefront of the battle this disease summons. I wrote to you from Ghana like I write to you now from the West. The West, where, slowly but surely, cancer is slowly but surely, even if painstakingly, becoming a more manageable disease instead of the death sentence it used to be.

I write to you from the length of time it has taken to get this far, Ma — but how far we still are from a cure — countries and continents and worlds away.

About the Author

Courtney Elizabeth Young

Courtney Elizabeth Young is a 32-year-old rape crisis counselor and sexual assault survivor’s advocate pursuing an MFA at Southern New Hampshire University while in her second battle with triple negative breast cancer. She has lived on and backpacked 6 continents and over 30 countries alone so far — but isn’t done yet. A proud owner of both the DRD4 and MAOA gene, she has lived out loud her wild ride through life on everything from cocaine to camels, from crocodiles to cancer. She won the Emerging Writer’s Grand Prize through Elephant Journal, was the featured travel photographer and writer in DRIFT Travel Magazine, and her work appears or is forthcoming in Palooka Magazine, Cleaver Magazine, and Tipping the Scales’ She Speaks and Hour of Women’s Literature.