First hand account of the inhumane nature of hospitals and the realization of the need for Patient Luxury. The birth of Janesi Comfort.
This is the blog of a gifting company that provides real comfort to ill people at their most vulnerable. The only was I can honestly talk about the degree of helplessness that comes along with hospitalization is by giving you my back story. It will be peppered throughout future posts so we need to lay the foundation now. If you want inspiration, entrepreneurial trials, or feature benefits feel free to skip ahead because right now I need to get personal and deep. If you are sitting in a hospital room and need someone to who can acutely sympathize with your anguish then lets go.
A year ago this month I was living my little version of the typical American dream; 17 years married to childhood sweetheart, two smart joyful children, nice property where we could roam the foothills of the Catskills while still being within reach of NYC, my wife Jo worked remotely in our converted barn shaping public education across the country, and I could run my business photographing celebrities and major ad campaigns. Everything crumbled on February 4th when Jo went into surgery to prep for a liver transplant, had a massive heart attack and died.
Brutal. Only after a year of reflection on what was can I start to grasp the underpinnings of our lives together that allowed me to get here today. We met in high school. Could have happened during elementary had one of us made a wrong turn out on our bikes. I happily reminisce about all of our firsts that we experienced together (continents, philosophies, beliefs, etc) but to do that justice it would require a memoir. For this story, first and foremost, our life together was built around fully trying to understand the broader human experience and then acting on locally for social justice. She negotiated the fine points in a new contract between the state of NJ and their teacher's union. I learned the delicate art of interacting with the super wealthy/famous and how to gently guide them towards my ideas. We worked hard, lived fast and grew. Things were following a very carefully planned path until Nov 26th 2018. That morning she woke up with a distended stomach due to her liver failing without giving us notice. Our life never recovered.
For two and a half months, save a week over Christmas which she blessedly got to spend at home with us, Jolene fought for her life in one hospital after another. I stayed by her bedside for nearly the entire period save a handful of assignments that happened to fall when family were in town to take over my vigil. She entered scared and scarred by institutional experiences and life never got better. Our existence zeroed in on the two hundred square feet of hospital room she would never prove to escape.
That experience shaped every moment over my last year. Anyone who has been in an institution alongside their ill loved one will tell you that a hospital room is the most helpless experiences ever. The entire system is built around efficiency for the institution. Their mandate is to do the greatest good for the greatest amount of people with a limited budget. This is good for a system but not for the person struggling to get back to the person they once were. Or their supporters who would do anything to help their other half. As soon as Jo entered the hospital I searched the existing gifting world for something I could give her that would make her life better. Something that would remind her that she had a team rooting for her. Something that would reflect the interesting individual she was before entry. There was nothing.
The illness gifting industry, which is massive (36M people are in hospitals just in the US which does not take into account long term care or hospice) did not address any of Jo's actual needs. Flowers and sweets are great. I sent them to her at regularly. But they are not first-touch items. I like these things and think sick people who aren't in immune-compromised wards (Jo was) with dietary restrictions (she did) should have them. But they don't remotely begin to address the actually physical and mental needs of someone at their most vulnerable point. What Jo really needed was comfort and no company answered those needs.
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