It was August of 2013, and the familiar San Francisco fog continued to roll in day after day. My life had been constantly changing the past seven months, making the disorder seem routine.

Everything having to do with my sister’s condition had been evolving faster than I could follow.                                                                                                                                                                                                                          

I started noticing the changes when her visits to the hospital stopped. Suddenly there were fewer medications for her to take, and the calls with her oncologist seemed to cease. I didn’t realize that her condition was getting worse until the hospice nurse started coming to give her treatment at home.

That foggy day we all headed to Healdsburg for our Kneafsey family reunion with my dad’s side of the family.  Then my mom’s side of the family showed up. Nobody went swimming or wine tasting. They all just wanted to be around my sister.

Then it hit me; they were coming to say goodbye.

Four days later, on August 15, 2013, my younger sister Tess died of brain cancer at the age of six.

I was ten, and my brothers, James and Emmet, were four and nine, respectively. Tess was my only sister, and we were the best of friends, partners in crime. We teased each other about boys, shared each other’s clothes, and did each other’s nails.

Just seven months earlier, all of a sudden she wasn’t herself anymore. She had no interest in her favorite things, had bad headaches, and was nauseous. My parents took her to the doctor and she ended up in the hospital. I was confused on how a checkup turned into my parents not coming home that night. The next morning we found out that Tess had a brain tumor, a label which, I had never heard of. We learned that she was going to have to have surgery to see if the doctors could remove it. We later had to learn more words about her treatment like chemotherapy, radiation and physical therapy. We were told that we couldn’t see them or Tess until she was healthy enough for us to visit her. Tess was diagnosed with glioblastoma multiforme (GBM), a rare type of brain cancer with a 5.5 percent rate of survival beyond five years.

My life completely changed when she was diagnosed, and I don’t think it will ever be the same again.  I struggle with aspects of life that the average person wouldn’t necessarily think about. For example, every time I meet a new person, I will eventually have to say the same sentence: My younger sister Tess died of brain cancer.

If I had told you all this in person, what do you think you’d say to me? Maybe you would tell me that you’re sorry or ask to give me a hug. Maybe you would just sit there and stare blankly at me, or tell me that the best people die young. These types of reactions often trivialize my experience and only serve to make others feel better. I can’t blame people for these reactions, as most don’t understand how to properly respond. But that doesn’t make it feel right.

When I arrived to school for the first time after Tess’s diagnosis, all of my teachers knew what was going on. Throughout the day, they were all constantly coming up to me to say that they were “sorry.” That was my first encounter with pity.

From then on, I always thought that it was my responsibility to talk about her situation publicly. I started off by telling everyone about how my family was doing and updating them on my sister’s condition. Then, right after she passed away, I started middle school. Everyone was talking about what had happened and telling me how sorry they were.

I never realized that I was allowed to say I wasn’t comfortable talking about my sister’s condition or death.

At the start of freshman year, I was afraid of entering a new community and once again having to explain my experience, going through the same awkward conversation, and putting my peers in an uncomfortable position. In sixth grade I was the girl whose sister died. Starting high school, I didn’t want that to be all I was known for. Looking back, the transition to freshman year wasn’t horrible; I chose who to tell and who not to tell.

One of the people I connected with while sharing about my sister was Junior Matthew Rodriguez. We connected through a middle school support group and are two of three students I know of at Tam who have lost siblings.

Rodriguez was 12 when his older brother Steven was diagnosed with a type of brain cancer called Atypical Teratoid Rhabdoid Tumor (ATRT), at the age of 19. He was a Tam graduate, an active member of CTE, and aspired to be an actor or vlogger. He passed away a few months later in the fall of 2013.

Rodriguez experiences similar reactions when people find out about his brother. “They will be in shock; at a loss of words,” Rodriguez said. “They get extremely uncomfortable and try to change the topic as fast as possible; just move the topic to a happy note.”

Losing a sibling is different than any other loss. It affects the surviving sibling in ways that an ordinary person wouldn’t think of, and therefore deserves a personalized reaction and response. I feel my grief the most on days like the first day of school or family events. Even things like taking family photos or the question ‘so how many siblings do you have?’ will bring up some heavy emotions.

Rodriguez and I both have been in situations where we have both felt isolated.

“A big pet peeve of mine is when someone compares [their] grief with yours,” Rodriguez said. “You can’t compare losing your grandparents, parents, even pets to losing your brother or sister.”

He reflected on some of the worst reactions he received.  “‘At least you have another brother ’was one of the worst things I have ever heard,” he said.

Like Rodriguez, I often get offensive responses aiming to explain why my loss is okay. “Everything happens for a reason”  is the most common and unhelpful one.

These kinds of statements make me feel horrible because they are an attempt to rationalize my sister’s death. But the death of a sibling can never be rationalized.

I find that inappropriate responses often come from people trying to comfort themselves. They make me feel like I am grieving in the wrong way.

Over the past five years, there have also been positive responses to my loss. About halfway through my freshman year, I told my teacher indirectly about what had happened to my sister in front of the class. Everyone sat in silence until my teacher spoke up and simply said, “I’m so sorry Kara. I don’t know what to say besides that, but know that I’m sorry and here if you ever need anything.”

I never ended up going back to talk to my teacher about my sister, but that response has stuck with me more than any other. He processed my story and didn’t rush to respond. It was short, simple and truthful.

Baylor Herlehy is a freshman at Placer High School in Auburn, California and was just over a year old when her older brother Maxwell was diagnosed with leukemia. “My entire childhood was hospital visits and checkups for Max,” Herlehy said. “The nurses became family friends and the hospital like a second home. Max was in remission multiple times, but the cancer kept coming back,” Herlehy said. Maxwell lost his battle to cancer when he was nine years old. She was seven. “My brother was loud and goofy and fun. He was always smiling and never for a moment was down about his circumstances.” Herlehy said. “We practically lived in costumes our entire childhood.”

Herlehy and I met at a camp for kids who had siblings with cancer. We became close as we went through the program and realized that we could truly connect through our loss.

“Many people act like they understand my circumstances when they can’t even begin to understand what happened to me and what I am going through…” Herlehy said. “Sometimes people treat me differently, like I am fragile or I’m a freak because I have been through hard stuff. I’m just like everyone else, I have just had different experiences than some people.”

Like Herlehy, I have also been thought of as “fragile.” I have had many teachers modify curriculum or excuse me from assignments after they found out about my sister, in an attempt to make me have one less thing to worry about. It makes me feel victimized, as if they don’t believe that I can be a strong individual after facing a hardship.

When I open up to people about my past, I find that it often makes them comfortable to share  something personal back with me. It feels as if they are trying to connect to my experiences by using their own hardships, that they are trying to prove that they have experiences similar to mine. Rarely do I feel like I have a place to talk about my story without worrying about someone else venting to me.
What scares me the most about writing this story is what people will think of me for talking about my experiences. I always think that people will assume that I am seeking attention or sympathy, which is the last thing I want. I try to remember and explain to people that stories like mine are essential to tell and to hear.

It took me a long time to learn what pity was and how I was supposed to react to it. For the bulk of the time that my sister was sick, whenever people told me they were sorry or they felt bad, I would always respond with “It’s okay.” Looking back now, it never was okay. I just couldn’t understand the difference between “I’m sorry I bumped into you” and “I’m sorry your sister is sick.”

Pity almost always comes with good intentions, but I have come to see it in a negative light. For me, it has always felt like the sympathizer is unintentionally undermining my situation. They make me feel as if I was somehow inferior to them because of what I have gone through.

Despite my ease with speaking openly about my sister, I will always struggle with what I’ve gone through. I struggle with not knowing what people truly think of me, since you can’t be mean to the girl who’s sister died, can you? I feel, more often than not, that when people learn about my sister, it changes their opinion of me. I don’t want that to happen.

There are basic things you can do to not make grieving individuals feel worse.

“My advice would be to not act awkward about it or scared,” Herlehy said. “It is something that happened to me a long time ago and although it is still hard, I am not going to break at any second.”

The impact of the loss of a sibling will never change, but since their death we have learned ways to cope with our emotions.

“If you hear someone’s story, don’t treat them any different and keep your personal experiences to yourself,” Herlehy said.

Rodriguez offers more advice. “Don’t feel afraid to talk back,” he said. “Don’t feel uncomfortable. Don’t feel like if you talk about it that it would upset me.”

It can be quite ironic when someone tries to change the subject or think that we don’t want to talk about our siblings. If we had the courage to tell you our stories, that means we also have the courage to handle a few questions.

“So don’t feel afraid to ask questions about my brother because I can handle it. By asking questions it lets me know that you care,” Rodriguez said.

I love talking about my sister. I love it when people ask me about her. People get overwhelmed by the fact that Tess died of cancer, but she was so much more than a cancer patient to me. She was an absolute goofball who loved to dance, no matter where we were. She loved the color pink and her Littlest Pet Shop toys. She loved babies and asked for my mom to have another baby when the Make a Wish Foundation offered her a wish. She would stay up all night having conversations with her stuffed animals. She would sing about how much she loved tikka masala and bothered all the nurses with her horrible jokes. She would walk up to a complete stranger and instantly make a new best friend.

When I get to talk about Tess, rather than the details of her illness and death, I feel at peace.