Layer 4: Capability – Example 1

I have a younger brother who has an intellectual and developmental disability. Imagine a child with downs 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 my brother. 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. Ability and disability was something I was very aware of yet without really understanding the adversity my family was facing. I saw the looks we would get, but could not always interpret them. Sometimes, we got people pointing fingers at him, whispering, staring. Yet, I cannot remember a day where my brother was not entirely included in everything we did. My dad went hiking in the Alps with my brother; we were on many family vacations together. I did not understand the questions people would ask my parents of whether my brother lived with us or if he always goes on adventures with the family. He was part of the family, a normal family, I thought. Living inclusively was all I knew.

Early on, I became very protective of my brother; I must admit that I actually punched a boy who teased my brother. 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. I was so small that doctors advised my parents to hold me back one year instead of letting me go into first grade. They were afraid I would not be able to stand my ground and might be subject to bullying. And here, I was threatening a boy in my neighborhood to a physical fight. 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 in spirit only now. 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 were 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 6 week after brain surgery and I never dropped a class or took a semester off because of it. I was determined to fight this brain tumor. On the other hand, I had the most difficult time telling my parents I had a tumor. They already had one child to care for and worry about. I was always the healthy one, the one who helped taking care of others. This role of being the one needing care was not one I was comfortable with or wanted.

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 4 years after my brain surgery, while completing the practicum for my master’s degree, the tumor 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, and practice self-care and, some day, allow someone else to take care of me.

A learning this tumor has provided me is to stay in the now. And for now, I cannot say that this tumor has hindered me from living a full life. I completed a marathon and hiked the Grand Canyon Rim2Rim hike last year. I work in a leadership role and volunteer with various organizations. I am determined to live life and to be present. And when I am afraid and break down, I take a break and recharge. Luckily for me, I know that after a good night’s sleep the sun will rise, its rays will wake me, the fear will dissipate, and I will emerge, a fighter yet again. Having resiliency will allow me to climb another mountain, to run another race, and to give me the opportunity to bring sunshine, hope, and inspiration to someone who needs it. And when the time comes, I will allow someone else to bring the sunshine to me.

As I reflect, I appreciate resiliency as one of my key strengths. The ability to surrender, to yield control, is something I will continue working on. I take comfort in believing I am a survivor.

As I explore this ability/disability and fight/surrender theme, I realize that there are key lessons I need to apply to my leadership development as well. In order to allow others in my organization to develop and grow, it is important for me ascertain when to fight and when to surrender. There are times when I need to let my team members take the reins so they may grow while I sit back and yield control. Knowing when and how to “surrender” is important in life and in leadership.