This story is of Ian, as told by Irena Kaci. Our “Opening Our Hearts” stories are based on people’s real-life experiences with loss. By sharing these experiences publicly, we hope to help our readers feel less alone in their of grief and, ultimately, to aid them in their healing process. In this article, we tell the story of Ian, who lost his mother to cancer during his graduate studies, and share his beautiful tribute to her memory.
I loved my mother. She was my biggest champion and supporter. I have a memory of being little and trying to build the car from “Back To The Future” out of Legos. I couldn’t get it to look anything like the actual car. My brother was teasing me, and I was getting very frustrated. I don’t remember exactly what my mom said when she interjected, but I do know that she had me laughing and appreciating my own creation. She was magical that way.
I grew up in Long Beach, New York. I have an older brother and a twin sister. We were lucky enough to be close to the city and had access to many wonderful museums. My mom made sure that we visited as many museums as possible. We also had a lot of extended family living nearby, but as a child I really felt cocooned in my nuclear family. I got along really well with my siblings and dad, but I especially identified with my mother. She was the one I most relied on for guidance.
My mother battled cancer throughout my undergraduate years.
I got my bachelor’s degree in integrative design. I started out as a mechanical engineering major, and then I designed my own major. During my undergraduate years, around 2018-2019 my mother’s doctors found a melanoma. My parents kept the information from us until she’d started treatment. My mother battled cancer throughout my undergraduate years. She had a few surgeries and some immunotherapy. Finally, she seemed to go into remission.
During this part of my mother’s illness, my family actually suffered quite a few deaths in our extended circle. My aunt’s husband died, and then both my grandmothers died within six months of each other. We lost a great uncle too, and even my first cousin, who had been a palliative care nurse. This cousin had been our rock for a while after my mother’s initial diagnosis. And then, right as my mother was improving, she was diagnosed with an aggressive cancer and died very quickly thereafter. She was only in her thirties. It was so jarring to watch the person who had been my mother’s primary nurse during the initial bout with cancer die so suddenly. My mom was heartbroken at losing her. She wrote a eulogy for my young second cousin to read at the funeral, but I wound up reading it. I felt mired in death, surrounded by death, cursed by it.
Then 2020 came around and with that, the Covid-19 pandemic. During that time, my mother also went in for some more testing. The tests showed that her melanoma had metastasized to her brain and lungs. Suddenly, we were in the middle of this worldwide pandemic and my mother had escalated to stage 4 cancer. It was devastating to go through that during the shutdown. My mother was dealing with unbearable news, and I couldn’t even visit. I remember getting through that weird semester living in an apartment on campus all by myself.
That night she was set to come back home, and I stayed up waiting for her.
When I had a four-month break between semesters, I was finally able to go home. My dad came to pick me up, and as we were pulling up to the house, he told me that mom was in the hospital. She was having the first of what turned out to be multiple emergency hospitalizations. That night she was set to come back home, and I stayed up waiting for her. When she finally came home, I realized she was almost 100 pounds lighter than she’d ever been.
While at home I spent my time applying to graduate programs, and got into Parsons School of Design. It was the obvious choice, since it was going to give me the opportunity to be near my mother. Going to graduate school during my mother’s illness and a pandemic was a big blur. I felt constantly stretched thin and pulled in every direction. I spent so much time being either left in the dark intentionally, or being an incidental victim of my mother’s own obfuscation about what was going on. I didn’t completely understand that what she was dealing with was terminal. It wasn’t until the very end that she started to speak plainly about it.
After contracting Covid, she went into the hospital for shortness of breath. During that visit, they determined that there was nothing else they could do for her; the cancer was just too far advanced. We moved her to a nursing home for hospice care. My siblings put in time and care, and I did as much as I could given that I was in graduate school. But my father was her primary caregiver.
The last time I saw her alive was visiting her in hospice. I brought watercolor paints with me. My mother had this image she wanted painted of her and our dog looking over a mountain. She was too far gone to speak coherently, but I was able to communicate with her about some of the details that she wanted, color, style, etc. I made the drawing for her while talking about my school experiences. I had gone on a school field trip to Dead Horse Bay, an old landfill on a beach. So I remember telling her about that, about wanting to clean the things that I’d collected. In the end, I played soothing music, and my family and I danced gently together in her room. We wanted her last memories to be joyful and loving.
Shortly after that, my father called. He didn’t say anything. He was just sobbing, and I knew what it meant. I went to my brother’s apartment, and we traveled home together from the city. When we got to the nursing home, I finally let myself cry too. I never could bring myself to see her body. She was in there covered by a sheet. I really didn’t want to see her lifeless. I remember touching her, and she felt wholly and completely inert, gone.
What could I learn from this great dying in my family? What could I create amidst all this grief?
My mother’s death overlapped with my graduate studies and I spent a lot of my time then thinking about the experience of dying in the U.S., the design of our hospice spaces, the physical taboos around death. My final project was to design a uniquely useful product, and here I was thinking about being surrounded by death. What could I learn from this great dying in my family? What could I create amidst all this grief?
I had a very strong urge to find meaning in all of it. I came to a realization that our whole culture is fraught and flawed when it comes to the topic of death. There are so few resources for someone who is dying or for someone like me who’s losing a parent. I remember clearly how other people interacted with me during that time, especially right after. I wanted to address the experience of losing a loved one, and the physical stamina needed to spend time with the dying in these uncomfortable spaces. I decided to dedicate my thesis to my mother, and use my grief to fuel my creativity.
When she died, there was a moment when I realized there was nowhere to sit. I hovered over her bed, perched on a radiator. There was nowhere for any of us to sit close to her or to be comfortable. I had designed a stool earlier in my studies. It was portable and small, and I thought about bringing it. But I left it at home because it didn’t seem worthy. It bothered me, and I felt helpless and useless and I couldn’t even help them be comfortable. If only the thing I designed had been better, stronger. It might’ve helped. Might’ve made the experience more physically comfortable.
I ended up thinking of different ways in which people could spend time with loved ones and made different shapes of furniture.
Right then, I knew I wanted to do something to address that. In the process, I worked on this design project from every angle. I collaborated with furniture designers, death doulas and medical professionals. I ended up thinking of different ways in which people could spend time with loved ones and made different shapes of furniture. By the time of my midterm I was very intent on having something that was height adjustable. I ended up creating a bulky frame system, which was cumbersome. That’s when my professor and classmates redirected me toward my previously abandoned stool design.
After that the path toward the ultimate design was much clearer. I worked hard to make the design medically compliant, and portable. I created something that is currently in use by a client who is losing her husband. A friend who connected me to this client sent me a very nice thank you note on her behalf. The note arrived almost a year to the day of my mother moving into hospice. It was the first time I noticed how acutely I resented not having a good way to be comfortable with a dying person.
Knowing that I’m giving space to this woman to get close to and spend time with her husband is really very validating. It has become my mission to imbue the end-of-life stages with more warmth and humanity. I’m a creative person, and my mother was a creative person. What better gift can I give to the world on her behalf?