“Are you okay?” my aunt asked me this in a text after deep-diving through my Instagram posts. I realized I’d never quite known how to answer that. What does “okay” mean? Feeling happy? Not actively dying? I think the latter is how I usually interpret it, which is why I always answer Yes, I’m okay. I’m okay. I don’t think the people asking really have a confident grasp on what they mean, either.
Let me give some background. I’ve had chronic kidney disease since I was 16, and from a teen to now a 28-year-old woman, I’ve been trying medication after medication – after treatment, after diet, after home remedies, after transplant – in search of anything from which my body would accept help. It’s very stubborn. My life’s timeline is saturated with disappointment and wasted effort, diving in headfirst with the same overflowing hope into every new attempt only to be crushed again and again.
How did I manage to live this way for so long without an end in sight? How do I cope?
The truth is, I don’t. When I think of a person coping, I see the image of them sitting stoically and silent, well-dressed and smiling slightly, while keeping the people around them comforted and unconcerned. I don’t do that. I used to, when I was younger and trapped in a self-inflicted contract of people-pleasing servitude – but not anymore. By now I’ve learned that my mental health is absolutely the most important thing I have, and sometimes the only thing I have. And so I treat myself as if I were a beloved friend or a daughter, someone who I would never make cope with something. I’d give them anything they needed and wouldn’t judge their emotions. I’d care for them tenderly and hold them when they cried. So no, I don’t cope with my illness. I just live with it in whatever form I find myself in each moment. Today, I’m numb. Yesterday, I was mostly in a good mood. A week ago, I was disassociating and having an existential crisis while sobbing into my pillow in a thick thundery cloud of hopelessness.
To someone outside my situation, it might seem like I’m not handling things well, but after over a decade of being sick, I know this is the best way for me to live. Externally, I fall apart pretty often, but in my mind I’m very kind to myself and confident that I’ll always take care of myself. In a world where society sees me as a burden, with even my family getting tired of dealing with me, I am truly the only person I know who will stay with me forever, no matter what – so I know I can make it through anything by fully feeling my emotions and tenderly caring for myself from the inside out.
Katherine Spahn is a 28-year-old artist who had to drop out of nursing school to focus on her health, which has been rocky since her diagnosis at 16. She has previously been on peritoneal dialysis and had a living donor transplant from a generous stranger in 2018, but her FSGS swiftly came back and will soon require a second transplant. Katherine mostly stays home creating art through forms like painting, crocheting, and drawing, and also enjoys video games, movies/TV shows, and taking care of her many plants. She shares her health journey openly on her Instagram, where she also keeps up with her friends and advocates for veganism. If you’d like to see more of her story, please feel free to follow her Instagram (@katiekid03) and send her a message – she loves to chat with fellow kidney warriors!
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