October 16, 2023 | by Mattie Sickafoose
Advocating for Myself
Advocating for Myself
As children, we have to learn what does and does not work for us. We aren’t born with that knowledge. When I had my accident (another kid stepped on my arm and it swelled to the size of a football), it took weeks for the doctors to understand my pain and listen to my mother when she begged and pleaded for them to take a closer look. They passed it off as “just a severe bruise” and said nothing was wrong. However, that was not the case.
Like other young survivors, I have a long and winding story when it comes to my cancer journey, one that involves many months of many rounds of chemo, a lot of nasogastric tubes, and a lot of tears. Doing kindergarten in the hospital was easy because I was learning terms like “chemotherapy,” “localized Ewing’s sarcoma,” “biopsy,” “hardware revision” (cancer ate my bone and I had to have a metal implant that took the place of my elbow), and even “amputation arm transradial.” These are all terms a six-year-old does not need to know, and yet that’s what I was learning.
But as time went on during and after treatment, I started to notice that something was not right. From elementary school through the beginning of high school things were rough, but still somewhat okay, both academically and emotionally. As I started to understand what I needed to succeed and be happy with my life, I realized there was more that I needed to do to keep up. Doctors call it “Chemo Related Brain Fog” but I call it a pain in my… education. Brain fog causes a lapse in memory, severe memory problems, and a lack of “mental sharpness”. As I was beginning high school, these were the symptoms I was experiencing, along with depression, anxiety, and survivor’s guilt.
These issues were not easy to cope with, especially during what were supposed to be my “normal” teenage years. I started expressing my feelings to doctors who thought it would be a good idea for me to start seeing a therapist, however, that all went downhill fast. My first therapist tried to “cure” my phantom pain, my second I couldn’t connect with, and my third tried to help by focusing on future goals, when all I could think about was what had happened to me and would continue to affect me. It was not until I saw a psychiatrist that my symptoms started getting better.
Of course, I tried everything I could before starting medication, but ultimately the medication is what helped me understand the way I feel. I also started seeing a therapist and told them what I needed right off the bat—that sometimes I didn’t want solutions, I just wanted someone to listen.
I am still learning what works for me mentally and emotionally, and I sometimes still have days where I cannot get out of bed, but now I try to let people around me know what I need to survive the day. I will never be fully cured, but knowing what I can do to advocate for my needs and desires has made my life so much better. Advocating for yourself does not have to be scary or intimidating, once you understand your boundaries and limits. Sadly, there are still situations where adequate accommodations are simply not possible or available, but most days we can still advocate for ourselves and receive the support we need and deserve.
Mattie Sickafoose is a Ewing’s Sarcoma survivor of 13 years, a 2022 Cancer for College Scholar, and a Cancer for College Social Media intern since June 2023. She is studying Arts and Sciences in Bellingham WA, with a focus on Secondary Education in hopes of becoming a photography teacher.
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Photo credits: Mattie Sickafoose