Hope is my companion. She goes with me everywhere and keeps a watchful eye out, peering at me lovingly with her gentle, wide eyes. I got her in January, 2013 around the same time I was diagnosed with ERSD and started dialysis. I thought she’d be a proper gift to myself by having her as a friend and a confidant. Getting her, I became determined to live life with vigor despite my diagnosis. Hope helped make the choice much easier “to get busy living or get busy dying,” in the words of wise jailbird Andy Dufresne in The Shawshank Redemption. I reveled in telling people, sometimes dramatically for effect, “With the death of my kidneys came a renewed life in my person.” I made it a mission to maintain the things that make me, well, ME. I know I made the right decision when I’m trying to sing a favorite song while cruising down the highway or when I’m dancing eagerly with my friends or when I’m telling one of my notoriously bad jokes and Hope tickles me, making me flash a bright smile and giggle aloud.
“When I’m busy living my life, I’m dispelling myths by showing that kidney disease is not a death sentence.”
Everyone struggling with kidney disease experiences a myriad of emotions daily. Anger, sadness, fear, confusion, courage – you name it, we’ve felt it –and we all have a roller coaster that glides seamlessly between them, although sometimes we get hung up for a while on a single emotion. I often see people let their feelings get the best of them, and I think, much like the amusement park worker who jiggles the controls on the stuck coaster, that if I can tweak someone’s emotional block just enough to help their ride get on track, then I should do so. Hope supports me in this effort. She is eagerly by my side as I lead by example. My first attempt at this was when I was determining how to adjust my illness around my life and not my life around my illness. I got on peritoneal dialysis which allowed me the flexibility to continue many of life’s pleasures: days at the beach, attending concerts, hiking, working out, and spending time with my friends. Doing the things I enjoy is the key to staying positive under the burden of dialysis. When I’m busy living my life, I’m dispelling myths by showing that kidney disease is not a death sentence. Hope smiles delightedly when she sees me sharing my experiences and encouraging other patients to not lose sight of things that bring them happiness. And, save for working out, she enthusiastically takes part in my activities.
“Hope smiles delightedly when she sees me sharing my experiences and encouraging other patients to not lose sight of things that bring them happiness.”
I got very involved with the Los Angeles Chapter of the National Kidney Foundation and started speaking to groups about living with kidney disease. I also helped to get the word out about the L.A. Kidney Walk where my team was the highest fundraising team in 2014. The walkers are usually people who have kidney disease, their family members and caregivers and/or people signed up to participate in the annual walk but who don’t know much about kidney disease. It always excites me to share my knowledge and optimism, and my friend Hope gets quite animated to see my enthusiasm.
I was nervous as I climbed to the podium before my first public talk on kidney disease. However, once I began to speak and peered into the supportive and comforting eyes of the 100+ people in the audience and saw Hope out there, I was able to tell my story with frankness and ease. Now I look forward to people approaching me after a talk and asking me questions. Often I get pigeonholed as an “ailing millennial” which evokes sorrowful looks, but when it’s revealed that I’m actually an “ailing Gen X’er,” I see a strange relief on people’s faces. This makes me wonder what else they just assumed, like believing that only the elderly are on dialysis. Encouraging people to think and question makes me feel like Santa. Hope knows this is one of my favorite things and amusement shines in her eyes. However, sometimes Hope needs to give me a poke and remind me to say, “Don’t think that older patients on dialysis can’t do PD! They can!” when I have been talking about another issue like the importance of organ donation. She knows that I’d rather get the information out there and seem slightly off-kilter than to neglect sharing such important information.
The idea that I can help someone just by being me brightens each day. Everyone who meets Hope is understandably drawn to her. I think she’ll be my companion for a long time. That’s fine by me and I am lucky to have her.
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Sasha Couch is an East Coast native who has enjoyed her last 17 years in Los Angeles. She has a BA in International Relations from The University of Pennsylvania. Sasha is a kidney transplant recipient. She delights most in her volunteer endeavors, notably working with the literacy nonprofit, Reading Opens Minds. Sasha is a home Peritoneal Dialysis Patient at DaVita Mar Vista Dialysis Center in Santa Monica, CA.