Rare Disease
I have always wanted to write a book. I just never planned to write about my rare disease. It started as a graduate class assignment. During the spring of 2020, I took an elective class called ‘Race in Contemporary America.’ The final assignment was to write our own autoethnography of race. Mine began: “I cannot write my story of race without writing about rare disease. I have been very sick all of my life.” When I was complete, the document was twenty-three pages. …
Technology
The word “community” is a big, broad word that means different things to different people. Its definition depends on the context and conditions upon which the term is used. Regardless, the word evokes positive emotions from people. I like to think we use the word when we feel a sense of belonging. Place brings this sentiment to us. Some humans are very attached to community of place. Our neighborhoods, homes, parks, schools, and civic centers locate our memories. We collect and gather sentimental objects in our homes to remember past moments of importance. Our homes and our neighborhoods belong to…
Justice
A person killed by the police should not be controversial; it should always be mourned if we call our legal system any type of justice. There should never be debates about whether the person who is now deceased was at fault. If our justice system was fair and equitable, we would be saddened whenever a human does not get the opportunity to present their case in the court of law. Regardless of the circumstances. Regardless of the color of their skin. And regardless of the reality that even a fair trial in court can fall short of true justice.
The…
Reflection
“The quiet whispers of the wise are more to be heeded than the shouts of the rulers of fools.” Ecclesiastes 9:17
The above verse is attributed to King Solomon, ruler over Israel until 931 BCE. He has been heralded as the wisest person that ever lived. At some point, he authored the Old Testament book of Ecclesiastes. Much of the book centers on the meaningless of life and human endeavor. It also delves into the secrets of wisdom, not unrelated to the mundane cycles of life we find ourselves in as part of the human experience.
Where does someone find…
Social Issues
It turns out business plays an inarguably powerful role in civic life. Over the past week, the world watched in disbelief as Capitol Hill was invaded by Trump supporters, ready to usurp a democratic process. These people, upset by the results of the election, were incited by the cumulative and deceitful rhetoric of a President who has continually undermined trust in governmental structures. …
Technology
Maybe every generation rants about the ways in which a new form of technology is destroying society. Previous eras in history saw the development of electricity, cars, phones, and televisions. It is true; each of these technologies changed the way humans worked and lived and interacted with their communities. These objects are so commonplace now we rarely consider they might fit in the category labeled ‘technology.’
I am proudly an Xennial, part of the microgeneration born between 1977 and 1983. I read somewhere this means my generation was the last to make it all the way to adulthood without constant…
Christianity
In 1633, Galileo Galilei was put on trial by the Roman Catholic Church. Galileo was an astronomer, mathematician and philosopher, as well as a devout Catholic. He is best known for his development of heliocentric theory; the concept that the solar system revolves around the sun. Copernicus invented heliocentrism approximately one hundred years prior, but it was not widely accepted then. Even though we now recognize this theory as accurate, during Galileo’s lifetime it was both controversial and heretical.
According to anthropologist George Murdoch, every culture has had a framework for both religion and cosmology. Religion and cosmology each provide…
Social Issues
About two weeks after I began to write this series, the mural pictured in the photograph appeared underneath a train trestle a few blocks north of my home. I do not know who created it or why. If I were to guess, I would suggest it was initiated by a housing activist as a form of protest against the changing landscape. (If anyone in Chicago reads this and knows who created this, please let me know).
Then someone pointed out to me the mural could be read as an advertisement. I had not seen it that way, but gentrification is…
Social Issues
I live in a frame style Chicago three flat building. It was built in 1907. The previous residents lived here for forty years. The owner and his wife maintained a multi-generational living situation. Their son lived in the top floor unit while they occupied the first floor. Eventually, the couple felt the building was too much work to maintain and listed it for sale because they were ready to downsize. When we moved in, we quickly understood their relationship with the neighborhood. Both neighbors on either side of our home were long term homeowners, having purchased their properties over twenty…
Rare Disease
Confessions of a rare disease advocate
PKU Awareness Day falls at the beginning of December every year. If you have no idea what that means, this is exactly the point of the day. PKU is a rare metabolic disorder in which the body cannot break down phenylalanine, an amino acid in protein. It is a serious condition. If the disease is not properly treated for one’s entire life, the excess protein causes severe neurological problems. Once a year, the PKU community floods social media with posts about the condition so the general public begins to understand the burden of care for the disease.
I am outspoken…
