I think I’ve shared (classily? psh) on enough social media mediums that, due to my Crohn’s disease, which has hit severe levels, I had to leave my internship at Newsweek and I’ll be returning to Arizona in a few days. Don’t expect any graceful writing today, because this is all just a plain bummer. I just turned 21 in March. I had started feeling better at the end of last summer. But this flare up (some Crohn’s terminology for ya’) is remarkably worse and it’s time to go home.

There’s a lot I want to write about. My parents, who are flipping out. The fact that I feel like a 90 year old. That I can’t date. That I’m terrified I’m ruining my career. Then again, this might be my last update in a year. Right now, still in New York, I’m struggling to process most of my situation. I joke, but this has been one of the worst weeks of my life. I’m focusing on what I need to eat, if I’ll be able to and what said meal’s after-effects will be. Also, the mountain of Laundry that appears to be Kilimanjaro and the one duffel bag I’ve allotted myself. I [...] continue the story

Alive Inside documentary short – Story of Gil & Denise

The Story About Care is one man’s reflections on the power of the caring relationship that can exist when people working in health care see the “person and not a pathology.” Jim Mulcahy shares his heart touching story of what it has been like to be cared for as he lives with end stage lymphoma while caring for his wife Sarah who has Huntington’s Disease.

This video was produced by the Canadian Virtual Hospice and the Canadian Association of Schools of Nursing in association with the Health Design Lab at St. Michael’s Hospital and Wendy Rowland, film maker. We are grateful to Jim and Sarah for opening their home and their lives to us and sharing their story in the service of others.

In 2009, my then 2-year old son Case was diagnosed with a rare disease called Hunter Syndrome. It is a progressive and degenerative disease that attacks all of the body systems and usually leads to lifespan of only 12-15 years old.

Later that year, he was in the hospital for several procedures including tonsil removal and the placement of a port-a-cath for weekly infusions. It was after these surgeries that he ended up in the PICU because of airway problems. Those were incredibly sobering days. But, you can’t live with sadness 24-hours a day, even in the PICU.

After several days in the PICU, when it seemed as if Case was on the upswing, I collected my “30 Pieces of Hospital Wisdom.” It was that return to writing after the emotional time of his initial diagnosis that would later lead me to start a blog chronicling his journey, www.savingcase.com. Here is my wisdom:

Packing only one change of clothes does not actually make for a shorter hospital stay. Socks don’t really start smelling until you’ve worn them for the third day. Not the second, the third. You really can curl your hair using a compact mirror propped on top of a soap dispenser. Curling your hair while listening [...] continue the story

A short documentary written and directed by Jeffrey Vincent Parise. One December afternoon a group of artists walk into a local nursing home and paint portraits it’s residents. During which the filmmaker asks the elders for advice on life, love and art. Three weeks later there is a group show displaying the finished portraits and proceeds of the sales are donated to raise money for Alzheimer’s Disease.