A great soul has died

A great soul, my brother Robert, died February 8. Robert’s 74 years far exceeded the initial opinion the doctor gave my parents that he would not live out his 20s. He was born with several congenital disorders that individually would mean hefty challenges, while collectively could seem insurmountable to my parents. Yet living to 74 was only one of many challenges this great soul worked to achieve in his remarkable life – a life that stood as a testament to his, and our parents’ determination.

I took some time last month to re-read some of the medical reports Robert had over the years. His changing diagnosis over time read like an evolution in medical knowledge, moving from a spina bifida in the 1950s to the final two. Dandy Walker Syndrome that had been identified in 1887 but not well known by physicians in the 50s. And an Agenesis of the Corpus Callosum that wasn’t identified in living people until the 70s.
 
Both involved missing developments of his brain in the first trimester, leading to the problems Robert had to deal with, and ones he showed remarkable work arounds in his life. Living to 74 was only one of many challenges he worked to achieve in his remarkable life – a life that stood as a testament to his, and our parents’ determination.
 
My parent’s choice to put Robert in the center of our family, instead of an outcast was consequential not only to him but to all of us sitting in this room – particularly to me in his brotherhood and numerous life lessons. Many of my most important values and lessons have bright lines of origin stemming from Robert and the way my parents raised him to squeeze out the most he could from his potential.
 
In the end, Robert’s life wasn’t just defined by his congenital disabilities but by the remarkable life he lived. Some of the lessons I learned in life from Robert include:
 
There were no victims in my family. Essential to my parents’ approach raising us was that self-pity was pointless to living our best lives. It would inevitably show up but should never find a home in us. It was a concession to complacency that stunted living.
 
Do we use what we have to make a difference in this world? Robert made a difference that made our world better and richer. The question I always look at in regular self-evaluations is if I have made a difference in the people and world around me.
 
The first No is often just a challenge to try harder. His vision (3 corneal transplants), seizures, and eye hand coordination kept him from his dream of driving a car. A dream my parents told him wasn’t possible. He didn’t concede until the Drivers’ Ed teacher told him he wouldn’t be able to get a license. His work around was his bicycle. An extrovert, he’d make his daily rounds to different restaurants, Orange Cycle, Santa Ana Community College (20+ years of PhysEd classes), and church where he saw familiar people.
 
Be fearless. His doctor didn’t want him to ride a bicycle, but it gave him his freedom. It did put a fear into my parents who worried about any car crash on his regular routes. He always came home happy and without a care for safety beyond his regular precautions.  His fearlessness shone brightly when he asked our neighbor, the school ‘hottie’, to the prom. She said yes.
 
We need to measure our society’s success by how we how we raise up the unfortunate – not by how we praise the fortunate. I am still surprised that this point is controversial or scorned. Story after story on treating the stranger, the poor, widows and orphans in Genesis, Exodus, Amos and other books of the Bible; to Jesus telling us that the measure of honor we show him is measured by how we treat the least important in our society. We read it in the Bible and experience its fruit by living it out in our world.
 
Benefit from knowing people outside of your tribe. I am forever grateful for my parents’ work with civil rights and taking us to some of Robert’s activities with Braille and disabled events. The world is a big place and it is to my benefit to have seen this in my formative years. I learned that it is our joy, privilege, task and purpose to enrich our world by understanding and embracing these differences.

Forgiveness. Forgiving oneself for failures in relationships can be a long hard process that often last longer than seeking out forgiveness. I know this is essential to my humanity as I try to be better in relationships. Changing my behavior and words to avoid needing to seek out forgiveness so frequently is a lifelong task Robert helped me with.
 
I have missed his laugh that began to disappear with his weakening body. But I will never miss his life, and his lessons that are tattooed on my soul.
  
Maya Angelou’s, “When Great Trees Fall” has been playing in my mind for several years as I watched Robert’s health decline. The last stanza in particular:
 
And when great souls die after a period
Peace blooms slowly and always irregularly.
Spaces fill with a kind of soothing electric vibration.
Our senses, restored, never to be the same, whisper to us.
They existed. They existed.
We can be. Be and be better. For they existed.
 
I love you, Robert.