LIV-ing above leukemia
I had the incredible opportunity of meeting with Olivia Gaines last month, a young woman from Los Angeles, Calif., who was recently diagnosed with leukemia. When I walked through the door of her room, the Pasadena hospital I had originally entered immediately was transformed into a home, with family pictures on the walls, flowers adorning the window that overlooked the city, and even a fully stocked snack cabinet from which Mrs. Gaines was eager to offer refreshments. The empty bed drew my eyes to the recliner where Olivia sat, legs curled to her chest, with her beautifully thick braids beneath her navy blue slap. Her eyes lit up: “Grace!” she exclaimed behind a bright smile. Her mother motioned for me to sit down.
“Don’t mind my backside,” Olivia said, as she moved to the bed, adjusting her open hospital gown. I settled in for what would be a lively conversation.
“This is the day that I’m choosing to take control and cutting my hair off,” she said confidently. “I could definitely keep it going for another week. But each day, it’s been shedding [by the] fistfuls. It’s like this process of watching your hair fall away. And I didn't think I would be ready.”
Pictures from just a few months ago show Olivia with a head full of thick, shiny black curls framing the sides of her always-smiling face.
What do you tell people when they tell you you’re strong? I asked. Aside from the setting of our conversation and the hospital gown she wore, one might never know just from talking to her, her condition.
“I just think I’m more willing to go through things than other people may or may not be. And I think that’s just a fact. I’m just willing to go beyond. And maybe that is strength.”
Not-so-normal college student
Olivia didn’t go straight to college after her senior year of high school. While many of her friends prepared to go to top tier universities, she decided on a different route. She took a gap year after graduating in 2013 and in the course of a year, found herself exploring art history in Italy, studying natural medicine in Costa Rica, volunteering in Hawaii and learning about permaculture in Ojai, Calif.
“My goals were always like, how can people live — be awake to the present moment — and how can people not be caught up in what society tells them, but actually make decisions?”
While she was still in high school, Olivia and her friends established a club called “Rebel Perspectives” in honor of their mascot, the Rebels; and the club’s goal was to create a space where people were able to understand one another’s perspectives. Her tenacity continued when she got to college. In her first year, she led a team of young women that helped bring TEDx to her university in Michigan.
“Those were kind of my goals,” she said, “connecting people to see each other and questioning what this society is doing and feeding you.”
In July 2015, Olivia led a group of incoming freshmen through a university-sponsored program on a wilderness route up a mountain in upstate New York. She didn’t understand why she constantly found herself in the back of the group, exhausted, even though she had opted to take the harder route.
“That was my first neck immobilization/spasm, which feels like a blood pressure on your muscles and it gets tighter and tighter and tighter and tighter, and then it holds, and it doesn’t let go. And it takes around 10 minutes,” she said.
When the trip came to a close, she and the other leaders put the participants on the bus, and her body collapsed. “I couldn’t walk; I had trouble running,” she said.
The neck pain progressively worsened as the school year began. Doctors predicted the pain would subside in two or three weeks at the most. It eventually got to the point where excruciating pain caused Olivia to writhe and scream so badly, that her roommate couldn’t handle watching it anymore, helpless to do anything to ease her pain.
By the time the rest of her body began to get bouts of immobility, she came back to her California home for more testing. On October 7, 2015, a Pasadena doctor diagnosed Olivia with leukemia.
“I have cancer. I didn’t really accept it because I felt really strong, even though people were telling me I have cancer,” she said.
She continued: “People were like, ‘Are you pissed at God? You can totally be angry.’ And I’m like, I kind of feel like an author. I’m one step removed, and I’m witnessing Olivia going through this. And I’m like, ‘What a weird next step.’ I had this year of just incredible awesome happiness. I had the perfect year of my life, and then I go and do my goal of [having] a transforming college experience, and then this [happened].”
So, at what point did you get the slap? I asked.
“The Friday before I’m diagnosed, the slap comes in,” she said. “I found the slap the week before I was diagnosed. So I’m like, ‘Why is this hat coming up in my life the week before I’m diagnosed?’ I looked back on my adventures and I’m like, I needed this in Canada. I needed this in high school. Where has this been my entire life?”
Today, she says the slap comes in handy when she has visitors, and especially when her hair follicles are hurting from the chemotherapy.
“The slap has made me feel way more confident,” she said. “It’s bringing positivity to my healing. It just makes me happy. I feel cute. I’m going through cancer, but I feel cute.”
She replied, “Yesterday I was the scared little girl who just wanted to be beautiful. And she found her beauty in what other people commented on. And then realizing through conversation, that I’ve grown up a little bit. You know what, there’s more to it than that. And having that realization. That’s where I am with it today. I’m able to let it go.”
“Denial is a process of grief. And for me a way to deny is the future part, because I know that’s a really scary part. The transplant, and I don’t know if this second round of chemo’s going to work, but I know that I’m going to be transferred to a different hospital; I’m going to have a new home. I know that if I find a genetic match…” She paused.
“I should be more positive,” she continued. “When I find a genetic match — because I am going to live — we’ll see if that all works. I try not to think about it too much.”
A message from Olivia from the Chandler School Announcement of the blood drive:
Chandler School is planning a blood and bone marrow drive on December 18.
I'm alive today because of blood donations. I will stay alive, and ultimately be cured from a bone marrow transplant. And so will people like me.
As I openly share my struggle, I know you, your family, and friends must be facing your own. Everyone wakes up with pain. I pray it does not lead to suffering, only growth and refinement to your optimum self. On the note of cancer, it breaks my heart that some of you will witness the pain of loved
ones going through this ridiculous, poison-filled process. I hope it brings you a deeper vulnerability for humanity and a restored belief in love as it has done for me.
Light and beauty, Class of 2009,
For more information about Olivia and her story visit livfor.life.