Feeling Alone Together
I was only 19 when my world was turned upside down with a diagnosis of advanced cancer. Because of my age, teetering on the threshold of child and adult, there was a fast debate in the early days about whether I should be treated at the children’s hospital or the adult hospital, and because of the characteristics of my cancer, I ended up with the adults. This meant that while I was in what should be the start of my prime years — college, dating, experimenting — I was instead spending my days on a hospital floor full of patients on the decline. Not just from their cancers, but from their age - I think the average age of my hospital floor was 75.
At first the nurses did not know what to do with me. I brought my own bedding, shunning the hospital gown and donning my own clothes, even ordered pizza delivered straight to my hospital room. I hosted Twin Peaks watch parties when my counts were high enough, and flirted with medical students and residents when I wasn’t vomiting into a bucket. Holding on to any semblence of normal became the goal: holding on to my youth with both hands as it slipped out of the door, even holding on to the last strands of my long hair until I looked like Gollum from Lord of The Rings.
At that time I was too sick and preoccupied to realize how lonely my life was, but I feel it clearly in my memories. I was firmly cemented into my 9th floor room in he big hospital in Chicago, watching life through a window. Hearing about friends’ escapades and love lives through calls and letters. Living vicariously through TV shows. This was 1990 after all, and there was no smart phone or laptop in my room, just magazines, books, newspapers and the hospital television. I was terrified but thought that if I said it out loud that it would make it even worse. I was lonely for company, especially during weeks when my blood counts were too low to have visitors, and if they did visit, they’d have to don the yellow gown, booties, gloves and a mask, which made it seem less than a real visitation. I was living in a literal bubble and have long thought that no one would ever truly understand what I lived through.
I have talked with many cancer survivors in the 35 years since then, and while there’s always an inkling of understanding between us, almost dying and going through difficult chemotherapy right at such a tender stage of life is not like anything else; I did not think anyone else would ever really understand. Until I began reading Between Two Kingdoms, A Memoir of a Life Interrupted by and for what might be the first time in 35 years, I feel understood (and, why did it take me so long to find out about this book and read it?!?).
To you, Suleika: I knew exactly what you meant when you described living through treatments for advanced leukemia and how life separated into BC and AC: before cancer and after cancer. Because I was treated by the adult oncology team, they too did not have my future fertility forefront in their minds. I also lost friends who did not know what to say so said nothing and disappeared. That loss of people whom you love on top of the diagnosis was awful.
I too remember that feeling of relief of just getting a diagnosis and knowing that it wasn’t all in your head. Of watching your friends go forth with their life while you’re stuck in a single phase. I recall the doctor putting their foot on the table to get more leverage for the bone marrow biopsy, and the odd feeling of putting my belongings in the hospital room "closet”, as if I actually lived there.
Yes, I know about all those best laid plans of what you’ll get done during this hospital stay, especially in those early days, and then having reality hit and getting nothing done. I get it when you talked about when the illness morphed from invisible to visible with the appearance of a portacath and losing your hair (I also didn’t look as good as I thought I did at the time of diagnosis, so it wasn’t far to fall).
I was also oncology’s Tween Queen! I had forgotten how the hair tends to all come out over a day or two, but now I remember. How lonely you can feel even when the people you love the most are all around you.
The city also felt as far away as the moon to me, and I also had a perch where I could stand with my IV pole and look over the highway and imagine what all of the people in their cars would do once they got into the city. Wow, I also had a hard time separating the script of what I wanted to say with what I actually let out of my mouth. I too had a lot of envy for my friends who got to continue seamlessly.
I often pretended that I was a normal young person doing normal young person things (like you, I wasn’t). I also knew the inside of the hospital more than I knew the outside world.
Cancer can be early or advanced, small or big, visible or invisible, manageable or all-consuming; there’s so much variety. But coming across someone with the same advanced nature of their cancer at about the same age just hasn’t happened to me a lot, and I am so very thankful for this book, and for this narrative of a life interrupted, like mine.
Now I am feeling alone but together.
