Figuring out where to start your story isn’t easy or obvious. I’m not exactly sure where to start – there is so much to tell and share. Perhaps it’s best to start with why?
Why write about my life, sharing the intimate and vulnerable details? Wow, that’s a great question. I guess I want to share my experiences with others who might be going through something terrible. Perhaps I have something you can relate to or something that makes you feel less alone. When Dustin was first diagnosed, I felt very alone. I wasn’t seen, heard, or understood. I was often dismissed, told to be positive only, or to just be his wife. My fear, anger, sadness, anxiety, my clinical knowledge; none of it mattered because I was told that I just needed to be positive and pray. That may work for some people, but it wasn’t going to cut it for me.
As a researcher and nurse practitioner I defaulted into what I knew how to do. I threw myself into researching his disease, to learn everything I could so I could prepare myself in some way. I needed to be the best wife and caregiver to support Dustin. Obviously, knowledge is power right? So I devoured everything I could research, news articles, memoirs, blogs, vlogs – anything that related to brain cancer. However, brain cancer is rare asshole and often impacts older adults.
It was hard finding a lot of information for younger adults. Some caregiving books I read were written by older women who I could not relate to in the slightest. I’m not saying their experiences are invalid or wrong. What these older women faced were definitely hard and awful, no denying that. However, people of different generations or at different life stages have totally different challenges when they face a terminal illness. I couldn’t relate to a woman complaining that her dying husband wouldn’t shave or put on a button down shirt when they had visitors. I just have different values, expectations, and life experiences that make my experience vastly different.
I read a lot of memoirs by young people with cancer or a terminal disease. At this point, I needed anything that could make me feel less alone or validate what I was experiencing and feeling. There just isn’t a lot out there.
Now throw in additional challenges like a pandemic, a narcissistic mother in law, and raising a puppy and you’ve got a wild ride ahead.
I hope that sharing my story will help someone else going through something horrible. I love to write. I love to share stories. So here I am, hoping to provide something, anything, to others on the struggle bus. I’m sure there will be people who don’t find it useful and that’s okay. You may do things differently. You may feel differently. You may react differently. That’s all okay. We are all doing our best and this is/was my best. So take it or leave it.
Beside you in time 