Layer 4: Capability – Additional Example

I have a younger brother who has an intellectual and developmental disability. Imagine a child with Down Syndrome; my brother had a similar appearance when he was younger. Typical for a Gen-Xer, I was a latchkey child as of age 9 or 10 and, therefore, responsible for helping to take care of him. I taught him how to tie his shoes and helped him practice writing his name. This is still the only thing he can write from memory to this day.

Early on, I became very protective of my brother; I must admit that I actually punched a boy who teased him. We were all playing in the neighborhood, and the boy started making fun of my brother’s looks as the other kids held their bellies in laughter. I am not sure how young I was; maybe 7 or 8. I told him to stop laughing and making fun of my brother and threatened to punch him if he didn’t. He continued, and I followed through. In a way, this was funny because I was extremely short and petite until my mid-teens. It must have been quite the sight. I was completely oblivious as to the possible limitations of my size.

I wonder how much the responsibility I felt for my brother had an impact on my development and shaped who I became: someone with an extreme sense of responsibility, a deep desire to stand up for those who I think might need help, and a fighter – though now in spirit only. And how much did my parents’ modeling of “just moving forward without letting a disability get in the way” impact my thoughts and actions.

My fighter spirit, or, resiliency, has remained with me and gotten me through some darker times in my life. One of those times was my brain tumor diagnosis at age 44. I was working full-time and was two years into my bachelor’s degree at the time. This fighter inside had me back at work less than six weeks after brain surgery, and I never dropped a class or took a semester off. I was determined to fight this brain tumor.

Unfortunately, my neurosurgeon was unable to remove all of the tumor because of its location, and I continue having this “thing” in my head. Only four years after my brain surgery, while completing the practicum for my master’s degree, we found that the tumor had doubled in size. I must admit, I was devastated and afraid. I thought about the future and how long I would have before the tumor completely encased my brainstem making it impossible for my brain to send messages to my heart to continue to beat. Or would it allow me to live but impact my cognitive functioning or cause my personality to change?

I am frequently thinking back to conversations I had with my professors about surrendering. The first thought that came to mind when being presented with the word “surrender” was “never!” – I will not surrender, ever. That word had such a negation connotation for me. Yet, they reframed it for me: surrender, the ability to allow others to help me. Surrender to my abilities and disabilities; not to give up but to yield control, at least sometimes. I had to learn that my body fatigues more easily now and when it does, I need to surrender, rest, practice self-care and, someday, allow someone else to take care of me.