This is an experiment that I am looking at fitting into my novel in progress – “Going Rogue.”

Dean,

I want to applaud your inclusion in the New York Times of “Learning To Listen To Patients’ Stories,” by Dick Schiffman. The piece was informative and touching. I have never read anything quite like it. And I want to thank you for that gracious lunch. I am glad that we both agree that comments are more like Letters to the Editor in the old days when it was easier to distinguish a POV versus the frenzied OK Corral. My comments are a part of my book project, GOING ROGUE. It is my hope that dementia itself can be seen through a new lens, and from someone who struggles with it versus an expert who is translating. I do not write translation. Either do you.

I responded to Learning To Listen To Patients’ Stories with a comment. 

I contracted a fatal disease. Dementia sets in. I do get lost, and find it rather interesting as it is usually somewhere I have never been. I have a 16-year-old (going on 27) “helper” who does everything. His spelling is bad but he proofs my stuff which is always a challenge. My photography is getting better, and there is no way I’m slowing down. What are walls for if not directions. This is Appalachia. I never did lock the door. There is nothing to steal. Everything I own fits into one canvass camera bag. My helper boy insists on my seeing a doctor who is the most rigid, mean, individual I have ever had the misfortune to meet. I deeply hate her.  “I’m only here to help you.” Right. I do not believe it. I do not take her medicine, and throw it down the toilet. When you die, you die. So what. All of this death fiddledeedee is new to me. I do not like being in this breathtaking pain, but I am not happy about dealing with a monster. I am poor. I can only go to a public health clinic where moms change baby’s diapers in a filthy waiting room. Public health is a travesty. It takes an entire day to get there, and there is no health care anywhere around here. What Doctor wants to live in Appalachia. She doesn’t listen, she snarls. As someone who was horribly sexually abused as a teenager, I don’t allow anyone to touch me, and that means her, too. She spits about it. She rages. It is not listening. I am an insult to her authority. She needs a real job. I go there for the 16-year-old.

I felt that the public and the private tone and attitude of the piece you published rated a response that was, too, entangled in that mixture of what people know and what people suspect of our institutions (this one being medical) in terms of how institutions function. People understand issues when the writer reaches them with a narrative that implies this could be you, too. I wanted to bring the example of how the medical community deals with fatal disease, and how dementia figures into it with more complexity than one might be expected to assume.

This would be both the public and the private. There is no response from the NYT. I’n not asking for one. What I am asking for is some awareness.

When journalism is responding to what the gatekeepers view as uncivil (like the mess Twitter has become) it’s easy to miss the forest for the trees. My purpose in commenting was to add to, not subtract, to the gravity of the piece. My comment was in no way uncivil or snarky. Often, in the comments section, it begins to feel like a monotone has set in, mainly people will seemingly be saying the same thing with some variation, and when this happens, your gatekeepers are keeping the gates closed too rigidly. Diversity in comments should be expected. In fact, comments can be inadvertently a part of the story. No one goes to the New York Times looking for it to become social media. It is solid journalism. Who gets to define civil from uncivil. My comment was not uncivil. It was informative because it added the element of how people with fatal disease are all too often not listened to because we make doctors and nurses nervous. Thank you for listening. Let’s do New Orleans again.

All Best,

Tim