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Inspirational Stories

Suesan

Caregiver

During caregiving for my partner, Dil, cancer has acted as a proctor of lessons we would have rather gone without. I have become more aware of accessibility issues because the chemotherapy and radiation treatment combined with overwhelming doses of steroids led to him having spinal fractures which impeded his mobility. Now when we go to a movie, are traveling, or generally getting around, I come armed with a pillow for his chair, he with his cane, an eye trained for impassable curbs or spaces that he can't comfortably navigate. With muscle atrophy that accompanied months at the hospital, he needs me to pick up heavier things so USPS packages, the laundry, and the cat litter have become solely my domain. I've learned what it looks like when the light leaves the eyes of a person when I'm in a conversation and they ask, "How are you doing?" and I tell them what is actually going on. I am chagrined to admit that it took longer than it should have for me to learn that most people want me to chirp, "Fine! Great! Never been better!" Not many people actually care about medication issues, annoying cancer center visits, or minutiae that cancer patients and caregivers become versed in during and after treatment. To spite all of this, I am a fan of gratitude, and it became a running joke between me and him in the hospital. When everything was going terribly, doctors were frustrating, the treatment wasn't going as planned ― make a gratitude list! On days where it seemed so bleak, so insurmountable, listing even the small things ― we're still breathing, still together right now in this moment ― the list may have been short, but it was there. I'm a decade sober and found myself falling back on the platitudes and sayings of AA in the darkest moments of treatment. I hated seeing him hurting and felt so powerless. Being impotent to provide change had to be the most frustrating part of the caregiving process. When I'm worried and my anxiety is eating me alive, I'm a doer. In my mind, all problems can be solved by action. Supporting Dil during treatment was the first time, truly, that I had to put my faith in the process. There was nothing else I could do besides hold his hand and be there. In the spaces where I could take action, I did. I reached out to different non-profits for support and education. The Leukemia & Lymphoma Society (LLS) was the first organization that the hospital recommended to us. They provided Dil with a small grant, connected me with a one-on-one peer conversation, and I found out about Light The Night (LTN). My memory of first seeing the Survivor's Circle in 2022 is still so clear in my mind. I was at the walk with my best friend from growing up. Dil was still in the hospital pre-transplant. Watching the white lanterns light up in circle made me cry with hope, moved by all those who had fought through and come out on the other side. In 2023, he got to come with me, and that felt like a huge milestone. We're fundraising together for the walk this year, and I have all the gratitude in the world that he can be by my side.

young white woman in blue sweater holding coffee with young black man with beard and mustanche wearing a knit cap and blue jacket holding a cup