Your stories

My late husband, Robert, and I had always lived our lives as atheists. In 2013 he was diagnosed with stage 4 lung cancer. Late in 2015, when the effects of chemo treatments were worse than the disease, we decided to discontinue further treatment and opted for in-home hospice.

We were fortunate to be able to privately hire a very loving and dedicated part-time carer and our medical coverage included weekly visits from a patient advocate, nurses, doctors, and eventually, contracted “personal” caregiver visits for bathing, shaving, nail trimming, etc. Because of this support, I was able to keep my full-time job working a hybrid schedule of in-person and remote.

Upon learning his prognosis, Robert stated in writing to our health care providers that he was an atheist and didn’t want any type of faith based spiritual counseling or support. He was from a Catholic family and I was from an Evangelical one so we both have had our fill of proselytizing.

Our health care provider honored these wishes. However, they “contract out” certain hospice care work. A few weeks before Robert died, a contracted worker arrived to bathe him. She began singing hymns, praying over him and “speaking in tongues.” Our carer happened to walk through the room and warned her to “cease and desist” per Robert’s wishes. But, when the contracted worker returned the following week the same thing happened. Again, she was told to stop. I returned home and asked if he felt better after being bathed and he responded that he didn’t like the woman. I asked why and his only response was “I don’t trust her.”  (It was difficult for him to speak at that point.) Our carer then explained what had happened and I made a few angry calls to ensure she wouldn’t return.

Because of our family backgrounds, we had become accustomed to proselytizing and could let it wash right over us but that my dear, sweet, loving Robert, in his last weeks of his only life while being so ill, vulnerable and dependent on others, had to experience this indignity, this total disregard of the person he was, and his wishes- was cruel, abusive and unforgivable. This should not have happened to him or anyone in a similar situation. And that, Dave, is why I thank you, Bevin and Sheila from the bottom of my heart for initiating the I Am Dying Out Loud organization. I’m so happy to be a part of it.

What you have shared over the years has provided valuable information that has helped me restrict and/or remove access of the religious to patients who don't want uninvited visits within health care settings in my area.

More recently I have been the recipient of such unwanted visits while having IV therapy for a progressive neuro-immune degenerative condition.  The visits were distasteful intrusions to say the least and in a couple of instances ended in heated debates between me and the religious visitors within the IV Unit setting.

Though my arguments against such visits are not popular around here because the area leans toward being a bible belt, and it is often excused with statements like "They mean well...", I will keep pressing the issue through education and advocating for patient rights with the hospital administration and the religious too.  At a minimum, I want the free-pass the religious have to IV, chemo and dialysis units within our local hospital to be restricted or eliminated entirely.  Getting the religious out of the wards when not invited to be there will come next...

Honestly, I find the arrogance and self-righteousness of some religious representatives to be breathtakingly disrespectful; especially toward those who are not at their best!

With great thanks to you and the organization for all that you are doing.

Dave and Bevin’s new adventure, the I Am Dying Out Loud organization is dedicated to ensuring that non-religious people's beliefs are equally valued and respected in medical environments, especially end-of-life situations.

This topic is deeply personal to me, and I'm so grateful for the humans who are creating this resource. Many of you know, but for those who don't, my grandmother died by suicide. When I got the phone call that she was being taken to the hospital, my whole world was spinning. I was the first person from my family to arrive, and the hospital took me to a private waiting room - the one where humans go when they're told the worst news of their lives, and I was terrified and devastated and...all the awful feelings. Then, the hospital chaplain walked in, and it was the first time I'd been alone in a room with a "religious-authority" since my abuse by the "religious-authorities" from my church.

The chaplain didn't know anything about my past, of course, and I'm certain his intentions were to try to comfort me in that waiting room, but his presence only brought me terror and shame. It was shocking how quickly I reverted back to my "submit to authorities" mindset. I was like a child again and found myself "confessing my sins“ (sharing family history that I did not want to share) to a stranger. Then he stayed with my family throughout the night and was with me when I was brought back to see my grandmother before they took her to surgery. He walked in with me as I saw her blood-covered body, and a part of her body was exposed that she wouldn't have liked. I stood frozen in horror at everything that was in front of me, but the thought that screamed in my brain was that a "man of God" shouldn't be in a room with my half-naked grandmother. I hated that he was there. I hate that he takes up an awful space in those already awful memories.

This happened before I found the ex-religious community and had ever heard the words religious trauma. He didn't know, I'm sure, how much more traumatic that night would be for me because he was there, and that's the whole point of #IAmDyingOutLoud. Bringing awareness about the need for secular options for non-religious people is needed in this world. I wish someone had just asked me if I wanted a chaplain to come, instead of assuming I would.

Thank you to all who are doing the work to change the "norms" of this world.