The children are watching

The children are watching

The conflagration of fact and fiction,

And wandering without comprehending,

About the dereliction of truth’s benediction.

 

In a world with no secrets,

Why are adults filled with so many regrets?

Why is nothing as it appears

And success built on lies and smears?

Why does every catechism

Bear little resemblance to realism?

Is perpetual pretense

The price adults exact for lost innocence?

 

The children are watching.

What do they see?

Hollow imitations of you or me?

Do they long for what is in the neighbor’s yard,

Even as the world tears itself apart?

Do they yearn for gold faintly gleaming,

On the fifth-tier of a video game?

At least avatars with scimitars

Can forego a world where people hate and maim,

For a cyber-Eden where they can find treasure and fame.

A need for borders

In a post-religious world,

The principle of singularity,

Of universal transparency,

To enhance human solidarity,

To amplify a common core of decency,

And dispel hatred and violence through technology,

Has run into the head winds of human psychology.

 

Aggression is more likely to leave a lasting impression.

Vulnerability is silenced by the cacophony of a righteous crowd.

Who would notice the Messiah voicing compassion out loud?

Maybe the borders needed in this new global order are not of the physical kind,

But rather spiritual fences to protect the heart and mind.

Being poor and sick in America

This apocryphal story about a cancer patient was written prior to Obamacare (appeared in the Norwalk Patch).

I will never forget the first time I heard her voice in the university hallways. “Are you from Cape Town?,” she asked. I stopped momentarily, because that familiar-sounding accent brought back a flood of memories about South Africa. When I turned around, I saw a tall, middle-aged lady with a smile, reminiscent of the African sunshine in my former homeland, beaming at me. This was the beginning of a decade-long friendship between two lost souls in the heart of Manhattan. I quickly learned that Lady M., as I will call her, had been through a lot of ups and downs in her life. She had been diagnosed with an insidious oral cancer that eventually required surgical removal of part of her tongue, rendering her sounding like a female version of Scrooge McDuck. Lady M. did not let her condition get the better of her. She became a mother figure, who dispensed advice along with recipes for how to make tarts and stews based on the produce on offer at Jack’s World and other cheap emporiums in Manhattan. Visits at Lady M’s place were filled with laughter, stories and trips to the local bodegas to search for the Hispanic equivalent of South African staples such as Marie biscuits (a cookie with a hint of vanilla, best consumed with tea) and Milo (a Nestlé chocolate and malt powder product that we liked). She showed me tokens of her youth as a South African lass born to Scottish parents. I learned about the influence of friends on her formative years and about how she had cared for her aging parents before emigrating here.

While her cancer was in remission, we could both ignore the elephant in the room. In many respects, Lady M’s story was similar to those of others in households all over New York; however, she faced the added burden of being poor and without health insurance in a country that regards this item as a benefit and not a necessity. The first sign that her cancer had returned was marked by slurred speech and pain in her jaw. After finally securing insurance and consolidating her medical records from various institutions, experts confirmed her worst fears. The cancer had spread and this time it would be fatal. It was ironic that she was the one that ended up comforting the few people that knew her. Lady M quietly started preparing for her own death. She withdrew from the few friends that still kept in contact with her. Gradually her speech became incomprehensible. People would automatically assume that she had a mental disability when she spoke to them. So she learned to get by with a pen and paper.

And then she died, not registering a blip on the radar of thousands of passers-by in the busy city. In reality, dying of cancer is not as sanguine as euphemistically portrayed on television. People are not always fortunate to be surrounded by loving families or live in fancy houses. Sometimes people fight, because they want to live or they have someone waiting for them. Sometimes people are poor, they have no one and in the end the fight against bureaucracy and to improve the quality of their lives prove be overwhelming. I salute those people. May their struggles remind us of the human component of the financial equation in the search for effective, affordable healthcare for all citizens.

Maria (First appeared in the Norwalk Patch in 2012)

Happy Cinco de Mayo. The bars in Norwalk carry signs beckoning customers to partake in liquid celebrations of Mexican heritage and pride. It is sometimes difficult to remember amidst all the fun that Mexico has also become the symbolic source of all undocumented workers entering the USA. The San Francisco Museum of Modern Art has an ongoing exhibit containing “Freeloaders,” the provocative title of a photo by Lola Alvarez Bravo, that may be interpreted as a visual encapsulation of some views on migration here from Latin America.

If one gets lost in artistic interpretations or vigorous political debates about the issue, Nancy Capelle’s moving post about helps one to focus on the plight of individuals. Her post also reminded me of another individual who “fell through the cracks.” Call her Maria. Maria caught the train from Stamford to Southport every day. I remember her as plump, with a sad smile and eyes with dark circles that belied her otherwise youthful appearance. Maria was an “illegal” immigrant. Once upon a time she and many others, seduced by the prospect of a living wage, crossed the border into the USA. The escape from an abusive marriage and monies she could send back home to her family kept her going day after day.

We only saw each other occasionally on the train platform. Sometimes she would show me photos of her three children. She had been in this country for several years with no imminent prospects to return home. Her children in the meantime were growing up and her only contact with them came via the help of others. She was a cook at a local restaurant and would take leftovers with her in the evening for dinner. She had nothing, but felt compelled to share some of her leftover burritos. I declined, silently embarrassed that I had just wasted twenty dollars on lunch with friends.

A couple of months ago her restaurant, like so many others in the neighborhood, closed. I don’t see Maria anymore. Currently, the path from “illegal” immigration to citizenship resembles a labyrinth, especially for someone like her who does not speak English as a first language.

I will never forget her eyes. The regrets of having made that fateful decision to come here several years ago were unspoken, but one could see it in her eyes. For every “rags to riches” Latin immigrant story celebrated in the press, there are a thousand Marias.

Maker nurses

Democratizing healthcare is one of the mantras of the Maker Nurse movement. In his 2014 book, “The Maker Manifesto: Rules for Innovation in the New World of Crafters, Hackers, and Tinkerers,” author and founder of TechShop, Mark Hatch, spells out the vision that turned manufacturing in every sphere upside down by placing advanced tools and spaces in the hands of do-it-yourselfers.  Making, sharing, giving, and learning form cornerstones of this vision. Co-founders of MakerNurse, Jose Gomez-Marquez and Anna Young, have applied the Maker vision to identifying tools that could help innovative nurses bring their ideas to fruition in order to facilitate improvements in patient care.

Necessity is the mother of invention. If a Chinese man unable to afford long-term dialysis can extend his own life with a home-built dialysis machine, why not make similar tools available to frontline healthcare workers such as nurses. That was the thinking fueling the desire to turn nurses into Makers, according to Gomez-Marques (watch YouTube video here). His other inspiration for an inventor that transformed healthcare was Dr. Gruentzig, who performed the first coronary angioplasty on an awake human in 1977. The D.I.Y. physician cobbled together the thin tube with a balloon on its end in his kitchen. When the opportunity presented itself in the form of a patient with heart disease in which the arteries were clogged with a sticky material called plaque, he sprang into action to perform a procedure now seen as routine in most hospitals.  Simply put, a tube with a balloon on the end is threaded through the arm or groin to the affected area and, when in place, the doctor inflates the balloon to push the plaque outward against the artery walls. This widens the artery to normalize blood flow.

Fast forward to September 2013 and the launch of MakerNurse where tools, platforms, and trainings are provided to the D.I.Y. community to make the next generation of healthcare technology. The founders tapped into their knowledge that nurses were innovating for years, submitting their information on how to make different medical gadgets to publications like the American Journal of Nursing. Where does on find these D.I.Y nurses. The answer is in non-ideal environments eg, after a catastrophe eg, Hurricane Sandy, or in rural areas.

Who are the D.I.Y nurses?

Garcia-Marquez relates the story of one oncology nurse who eased the fears of pediatric cancer patients by explaining the process of irradiation for their tumors using a small-scale replica he built of the machine used for this purpose, called a synchrotron. Children are patiently led through the process of proton therapy, where their bodies are placed in a donut-shaped hole in the machine and rotated so that protons can be directed at their tumors. At the other end of the spectrum, one finds entrepreneurial nurses who make color-coded IV’s and sell them to hospitals. Then there are the stealth or quiet Maker nurses who eg, hack and repair their own stethoscopes. These are just a few of the profiles of people who Garcia-Marquez and his co-founder, Anna Young, have managed to unite under the MakerNurse umbrella.

Who are the founders of MakerNurse?

Gómez-Márquez, a thirtysomething native of Honduras, has cemented the reputation that he gained as a tinkerer and inventor of practical medical devices for use in poor countries through his work at the Massachusetts Institute of Technology. He recalls: “My mother used to say my toys would last only a few days because I would take them apart, saying I had detected a defect.” In Tegucigalpa, the capital of Honduras, where his grandfather worked as a surgeon, Gómez-Márquez saw with his own eyes what differences money made in access to medical services.  His grandfather, a surgeon, worked at both private and public hospitals in Tegucigalpa, the capital of Hondura­s, where Gómez-Márquez saw with his own eyes the differences that money made in access to medical services. According to him:”Poor people, who went to the public hospital, were less likely to get chemotherapy or appropriate prostheses. People who could afford it would go to Texas or Boston for their health care.” The prolific inventor and his team has also developed a needle-free system for delivery of the measles vaccine for use in poor countries, where the disease still kills hundreds of people a day.

The other co-founder, Anna Young, is an economist-turned designer and lectures at the Little Devices Lab at MIT within the Institute for Medical Engineering and Science. She is a co-instructor for MIT’s health tech prototyping and design course, HST Maker Lab. Her expertise is in: digital fabrication and design, creating technology from found materials, building networks of health technology innovators and designing clinical studies to move health technology prototypes from the lab and into practice. This expertise was in ample evidence with the invention of a solar-operated autoclave, called the Solarclave. This device is especially useful in areas lacking a constant supply of electricity to generate a constant supply of electricity required to attain the 250°F minimum temperature for sterilization of instruments and other supplies in healthcare environments.

Footnote: They have recently spun off Pop Up Labs, a privately-held company to make tools to scale across clinical environments.