This is Who I Am and Why I Write About Hospice

Photo credit: Felix-Mittermeier

Writing about hospice, death and dying isn’t just a job for me, it’s a mission. This is why.

We launched Hospice News in 2019, and over the years many people have asked me how I got into this work and why I do it. So I thought I would take a moment to share my story. As people who work in the field often say, we all have a story.

First, I have to admit that in my young adulthood I never planned to become a journalist, and I never spent a day in journalism school. I studied for my original ambition, to teach English at the college level. I studied at the University of Chicago. But — because one semester of graduate school there cost more than my entire undergraduate education — I never finished my Ph.D.

So I fell back on journalism and soon fell in love with it. I am grateful in many ways for the direction my professional life has taken.

I started working in magazines covering legislation and regulation related to transportation safety, emergency response, counter-terrorism and homeland security. After about seven years of this I moved into health care when I worked at the publishing arm of The Joint Commission. In addition to working on a diverse range of books and periodicals, I edited the accreditation manuals for hospice and home health agencies. That was the first professional work I did in the hospice space. I stayed there for 11 years.

But when I saw a LinkedIn post about a forthcoming new digital publication focused entirely on hospice, I jumped at it. I really wanted this job. It felt like a personal mission before I was even hired.

First, I was knowledgeable about hospice from my work at The Joint Commission and hold a strong admiration for people who have the courage and compassion to care for the dying.

I also had personal experience with hospice care, seeing my cousin pass away from cancer in her 70s after receiving excellent hospice care. My beloved nephew Joshua also died peacefully in hospice care at age 14 after a brief lifetime of suffering from cerebral palsy and other chronic conditions.

Also, about 10 years ago I stayed with a friend’s family in Texas for a few weeks to help care for her mother while she received hospice. Here I saw hospice’s profound benefits and also its limitations. On one awful day, the patient’s medication delivery was delayed and she literally screamed for about eight hours.

But the real reason that this work is so dear to my heart is that death seemed to shadow my steps as I grew up on the South Side of Chicago, in a neighborhood where violence was everywhere. During my formative years I saw a lot of people die, through illness and age, through disease, through accidents and even violence.

In one incident, I saw two men open fire into a pizza restaurant, killing one 19-year-old man and injuring two other people.

But few things have shaped my life more profoundly or dramatically than the day I found my little brother’s body after he was shot and killed. Danny was 12-years-old. In fact, he was three days away from his 13th birthday when he died. I was 15. My mother and I had gone to a bakery to pick up his cake and came home to find that he was gone.

I will spare you the horrible details of what went on that night. But I will say this. These events left me with complex post-traumatic stress disorder and a feeling of unending grief. Later in life, I found a great therapist who has helped me tremendously to work through this and manage it.

But back in the day, I dealt with all of this almost completely alone — because no one could handle talking about it. My parents were too devastated themselves to offer much support at the time, and friends and other family members just didn’t know what to say and found it difficult to listen to talk about the uncomfortable subjects of death and grief.

So, now, I have made it my mission to talk about it. To foster conversations about death and dying both professionally and in my personal life. If someone I know is bereaved, I show up for them. I talk to people in my life about what the future may hold, how we feel about it and how we prepare for it. I am a surrogate health care decision maker for several friends; the list goes on.

I am also kind of a walking memento mori. I tend to wear mostly black, fill my home and wardrobe with skulls and wear earrings shaped like coffins, among other things. These are small gestures. but I hope in some small way that it makes people think, helps them remember what we all have to face.

I continue to grieve for my brother. But I am OK with that. Grief is the price we pay for loving, and it’s a way to stay in relationship with our departed loved ones. We are connected in our grief, with them and with each other.

My work at Hospice News — and at inside Hospice — is an extension of this drive. I have been blessed with a very large soapbox from which I can help inform and educate people about the end of life and the people who stand ready to care for them when their time comes.

It is my mission, and it is my honor.