I became a patient on February 1st 2024. My sister, a caregiver. As I lay temporarily blinded by corporal pain, the rush of saline, opioids, and contrast dye, my sister was left to bear witness to the undiluted reality of my physical state. Despite my best intentions to conceal my declining health over the course of the prior months, the sudden ambulance rides, chest tubes, biopsies, and oxygen masks stopped me in my tracks. I could no longer save her from myself, from the pain of the uncertainty, the fear, and the grief that accompanied my cancer diagnosis.

 

Michaela ‘Mia’ Downey is a twenty-two year old café manager and barista in Newport, Rhode Island, as well as a full-time business student at Bridgewater University. A young adult herself, she became one of my primary caregivers early last year.

 

As a child, her full-bellied laugh filled the room. She was my best friend, yes, but she was also my baby sister. I sought to be her protector, teacher, and caretaker. We traversed life’s heartbreak together, from our father’s suicide to our mother’s physical and emotional distance. Through it all, however, I expected nothing less of myself than to shield her from the bitterness of the world. She was the bold rosy-cheeked girl who, despite our personality differences, I felt to be an extension of myself.

 

Since my diagnosis, Mia has transformed into someone who I never imagined her to be: my caregiver. She has become someone who carries me when I no longer can, who listens when words are all I have, and tries to stand steady when the ground is shaking beneath us.

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This interview is both a conversation and a reckoning with what love looks like when we are faced with the unimaginable and love is all that is left to heal our brokenness. It is a glimpse into a younger sister’s heart whose life shifted overnight into a balancing act of school, work, relationships, and the invisible weight of watching a sibling face mortality.

While cancer has divided our experiences in ways we’ll never fully bridge, it has also revealed how profound our bond is.

We are now taking care of each other, in ways neither of us ever expected.

 

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Sarah: How would you describe our relationship growing up? How has it changed over time and, especially, how has it changed since my diagnosis?

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Michaela: Growing up, before we went to school and met people, we were each other's only friends. We did everything together. We shared a room, so we got pretty close through that. Over time, we made other friends through school or sports or activities, but what remained the same was the fact that we knew, regardless how many friends we made and how many relationships we've had, none of them would be the same as our relationship as sisters. We pretty much have lived our entire lives together. Most of the things that we went through in life, we could say we went through together, and we had a sense of understanding through all of that. We went through hardships in our relationship and trauma, and a bunch of other things had caused us to become more distant from each other at times, but we were always brought back to each other by that common ground of sisterhood.

 

When you got diagnosed with cancer, it was the first thing that we had gone through in our lives where we couldn't necessarily relate to each other's struggles in the same way. You became the patient and I became a caretaker who has had to watch you go through this. It was very hard to resonate with you and support you because I will never know exactly what you’re going through, but I always want to be there for you. As someone who's a caretaker of you, you're not just my sister, you're not just my friend, but you're also someone that I'm looking out for and taking care of in a different way. As the younger sibling, I wasn’t used to that because it was typically the other way around. You, more so, always looked out for me.

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Sarah: What was your first reaction when you learned about my diagnosis? How do you remember the process of me getting diagnosed? I obviously see this period of time from one perspective, but I want to hear it from your perspective and the emotions that you experienced during that time leading up to and during my diagnosis.

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Michaela: When I was first told about your diagnosis, I knew something was wrong. I just didn't know exactly what. You know you hear “cancer” and you think it's this rare thing that nobody will go through, especially not someone at your age. So I wasn't expecting the diagnosis, especially because you were so healthy, and you had a healthy lifestyle. I think my initial reaction was just shock, and I didn't really think much of it before you were admitted to the hospital. I obviously thought, “What’s next?” and “How are we going to figure this out?,” but I don’t think that the emotions really set in until I saw you physically unwell in the hospital rooms and began to feel the stress of the unknown. I think the emotions that I mainly went through during that period of time were a lot of stress, like a lot of stress and confusion because there were no answers. You know what I mean? It wasn't black and white. There were so many different types of cancer it could be. There were so many different prognoses you could get. There are so many different treatment plans, yada yada yada. I was just very anxious and eager to know what the plan was and what would follow. I think that was what really made me the most emotional — just being there with you and watching you go through tests and treatments and seeing how upset you were at times.

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Being there had a really big impact on me. I felt useless, in a way. There was nothing I could do about the situation to change anything. Then, also, I felt a sense of guilt, asking myself, “Why did this happen to you? Why didn’t this happen to anyone else? Why couldn’t it have been me?” But it was you, you know. 

Another thing is that I didn't want to enjoy anything in my life, like going out with friends or doing certain things, because you were in the hospital and you were just stuck in a room and not able to do anything. Overall, I’ve felt a lot of guilt, stress, and sadness. I’m very scared of thinking about having to experience a life without someone that I've pretty much spent every single possible thing you could go through in life with. Thinking about a life without you is unfathomable.

 

Sarah: Do you ever struggle to balance being my sister with being my caregiver? What has been the hardest part of this balance? How have you tried to cope with these changes and challenges?

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Michaela: Well, as sisters, it’s so normal to fight and get into arguments but, when you were really sick, I found myself biting my tongue a lot when, before, it was normal to scream at each other for the littlest things. I also became more aware of your limitations due to cancer and learned how to adjust my schedule around you more than I ever had before. Also, in the conversations we have, I think we've learned  to find a good balance between joking and serious conversations.

As for coping with your diagnosis, I’ve just gotten used to it. You learn to adjust and to talk to a therapist. I also talk to friends and ask for advice and take the advice that most resonates with the situation. You can’t take every piece of advice you get, but you can take what you think is most beneficial. 

 

Sarah: In what ways has this experience brought us closer or made things more difficult?

Michaela: I think, in a way, both of them apply. It’s made us closer in some ways and distant in others. The first thing, like I said, is that we’ve experienced two very different points of views on your diagnosis, so we feel less connected in that way. Another thing is that my subconscious coping mechanism is often distancing myself from the situation because I’m scared of getting hurt and scared of the possibility of death and just the whole concept. It’s something that you can’t mentally process until it happens. I’ve already experienced loss. It was dad. I was very close with him, and losing him was really hard, especially in the first couple of years. However, at the same time, I was never as close with dad as I am with you.

 

In a way, your diagnosis has made us closer because it has made us view our relationship a lot more as a blessing. Regardless of diagnosis or prognosis, I’m so grateful to have a sister that I am so close to and have such a good relationship with. I think about quality over quantity. Although it sucks so bad that this is the way that life has played out, I’m glad I’m here and able to be such a big part of your life during this process.

 

Sarah: First of all, I want to say that I really am grateful for all that you've done for me in terms of taking me to treatment, being there when I'm in the hospital, and making it a point to visit, because I know it's not easy to sacrifice your own life and your own plans for me, especially being a 22 year old who wants to have a life outside of the hospital. I appreciate you trying to put yourself in my shoes. Anyways, how do you take care of yourself while taking care of me? How do you try to cope with your feelings?

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Michaela: I try to feel my emotions and not push them away but, sometimes, my unhealthy coping mechanism is not talking about the situation at all, like trying to forget that any of this has happened. I continue to do the things I have to do in life. You know, get up every day, make my bed, take a shower, go to work, try to eat healthy, and hang out with friends. I don't like wallowing in sadness because, at the end of the day, if something's going to change, it's not going to be something that I have any control over. So I just need to, you know, keep moving forward.

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Sarah: Do you feel like you’ve had space to grieve or process your own emotions during this time? What or who helps you process your emotions?

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Michaela: Seeing a therapist helps, but I think it's hard because, when you're doing well, I don't really think of the bad that could come but, when you're looking ill, that's when I start to process things. I think it's just a natural thing that happens. It's not something that I can control. It's just like, when you're doing well, I don't want to think of the bad, which I think is a good thing. I also like listening to other people who have experienced a similar thing because I’ve talked to people who have lost parents to cancer, but never siblings. I’ve listened to podcasts sometimes, but, I mean, I haven't connected with any siblings of patients.

 

Sarah: Have you ever felt invisible or unsupported as a caregiver? In what way?

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Michaela: Yes. People don’t fully understand everything that goes into taking care of you. You know what I mean? Many people say that, as a sister, I have to do it but, in reality, I don’t. I do it because I want to be there for you, which goes unrecognized. I also think that many people only see you when everything’s going well, but they haven’t been there when you’re crying or sick. I don’t think people always recognize how emotionally draining it is for someone to watch a loved one go through all of these really difficult moments. Many people haven’t seen this side of things, and I don’t think that many care to understand it. The cancer patient is the one that goes through the most trauma after diagnosis, but I think we underestimate how difficult it is on the caretaker.

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Sarah:  If you could take the mic and tell everyone around you (who is not an immediate caregiver or a sibling of someone with cancer), what would you tell them? What do you wish these people understood? 

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Michaela: Don't let cancer define the person that has it and try not to look at the person any differently. Obviously, be supportive of their new and changing needs, but don’t only think of this person as a cancer patient. Also, be more supportive of the people that are caretakers and attempt to understand what they go through because it's hard. Many of us are not only doing all we can for our loved one. At the same time, we’re doing all of this with the thought that this person may pass away, so we have to grieve while also helping this person. We have to be strong when this person feels weak, even when we feel weak ourselves. We don’t want to make our loved ones scared.

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Sarah: That’s exactly how I’ve felt, too. I didn’t want to make you scared. I didn’t want to make Eva scared, so I withheld information.

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Mia: But we’re also not little kids.

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Sarah: Exactly, but I’m not a little kid either. Even though I'm sick, I don't want you to pretend or hold things back from me.

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Mia: Well, you have enough stress. You don't need more.

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Sarah: It stresses me out more if I feel like people are acting differently because they're worried about upsetting me. I need honesty, and I want you to be able to still come to me with your feelings and emotions and problems, because if not, I’ll feel useless.

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Mia: You are useless. <<laughter>>

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Sarah: What do you wish I would better understand about your experience and emotions as my caregiver and sister?

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Michaela: I can’t always be there for you, and it’s not because I don’t want to be. It’s just because I can’t. It sucks, and I actually feel so guilty about it.

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Sarah: What have you learned about your own strength—or limits—through this experience? Do you think that your past experiences, such as losing dad, have helped prepare you to be more resilient during this?

 

Michaela: I think your cancer diagnosis has made me more numb, which I don't know if that’s a good thing or a bad thing. I mean, I know what it could feel like to lose someone, but I don't think any experience prepares you enough to lose a sibling. You know, it's something that I never thought could possibly happen. I've always seen my life with you in it and, to imagine that it's a possibility that you’re not there, it's just something I can't ever wrap my head around. I think that is why I feel numb. I can't know, nor do I want to know, how losing you would affect me.

My strength is that I try not to put things on other people. My weakness is that I try not to put things on other people.

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Sarah: How has this experience changed your sense of identity, purpose, or priorities in life over the past year?

 

Michaela: It has made me more grateful for certain moments in my life. I appreciate the little things, like how grateful I am to experience things, like love and friendship and a sense of family and comfort. I also have a new perspective on life, knowing a bunch of shit now that I wish I didn't know and having to experience new challenges. I’ve started to reflect a lot more too on the past and have become more appreciative of our childhood together.

 

Sarah: Did your perception of cancer change after my diagnosis?

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Michaela: Definitely. Before you got cancer, it was a distant thought in my mind. It was something that I would see on TV or would do a school project on. I never really thought about how it could impact my life or the life of those around me. I knew a cancer diagnosis was often sad, but I didn’t understand the other emotions and uncertainty of not having one clear answer. A lot of people who go into remission tend to relapse. Even if you were to get cancer one time and go into remission, there’s always that thought in your head that the cancer might come back. I see now how, once someone, especially a young person, receives a diagnosis, it affects them for their entire life, from the time of diagnosis until the day they die.

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Sarah: Do you think anything good has come out of my cancer diagnosis?

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Michaela: I’ve learned to treat everyone kindly because you genuinely have no idea what anyone's going through. There have been so many cancer patients that don't even look like they have cancer. They may not be the stereotypical cancer patient you see in movies, but they are going through so much shit. It is the same with caretakers. You don't know, by looking at someone on the street, who's taking care of their dying sister or mother. Just be kind. 

 

Sarah: How do you deal with our other family members' emotions and expectations? What challenges have you faced dealing with our family?

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Michaela: Being the mediator between everybody has been hard. It’s tolling to constantly have to talk about illness and explain things to people, knowing they can’t comprehend the gravity of the situation. Your illness seems to be all they ever talk about, and they do so in such a negative light. They also don't accept death as an option, you know. They’re making it a thing where it's almost scarier to die because they act like it’s never going to happen. You know what I mean? But, death is a very natural thing, and it happens to everyone. It's something that should be talked about more, and I think a reason why we're so uncomfortable with it is because we don't talk about death in a positive way ever. It's literally always seen as a negative.

 

Sarah: If you could give advice to the version of you one year ago when you first got the news, what would you want yourself to know? What advice would you give other sibling-caregivers?

 

Michaela: No matter what type of advice I was to give my past myself,  I wouldn’t have listened to anything in the state of mind that I was in at the time. If I had to say one thing, I would say, “Live in the moment. Don’t think about the future because you are just going to ruin yourself obsessing over the possibilities.”

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Sarah: If you could tell yourself one year ago, that I would still be here today, would you? It’s something I think a lot about too.

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Michaela: Yeah, I would, but it would probably be different for you.​ I thought that maybe you wouldn't want to know because you did so much last year and, if you were like, “Oh, I'm still gonna be here next year, I have more time,” I feel like you wouldn’t have done as much.

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Sarah: Yeah, that's true. I did live a lot last year, and I'm hoping this summer is just as good.

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Mia: So, what if someone told you that you're still gonna be here next year?

 

Sarah: I’d be like, “Fuck. I'm broke, Living is expensive.” <<laughter>>

 

​What changes do you wish existed in the healthcare system to better support families like ours?

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Mia: First and foremost, financial support. I would also say more caregiver support services. I’d like to see age-specific support groups for caregivers, and online resources because, obviously I can’t always go in-person to groups. As for the healthcare system, it's unorganized in a lot of places, and I think there's a lot of guessing going on. There’s a lot of uncertainty, and it makes me question how many people just blindly trust doctors with their lives solely because of the doctors’ titles.

 
Sarah: If you could share one message with the world, what would it be? 

Mia: Find your own meaning of life, and never let it go.