To Those Who Would Shame Me

When I first posted in a local facebook group the announcement of the Clarkston Death Café, the very first comment was “Making money off people’s grief and suffering. You should be ashamed of yourself.”

My first reaction was one of anger. “How dare you shame me, sir!” My second reaction was confusion because there is no charge to attend a Death Café.

Then I realized he might’ve gone to my profile to see my occupation as an end of life professional.

The next thoughts came flooding in and I wanted to ask all sorts of questions like, “do you have this same response to doctors, nurses, chaplains, funeral directors, cemeteries, florists, caterers, or anyone else involved in a dying person’s transition?” “Why am I so special to invite this response?”

To this man and to all others who feel this way, I’m sorry.

I’m sorry that you see it like that. I’m sorry that you have had experiences with the medical community who treated you and your loved one with disrespect and a lack of compassion.

It is that which I mean to counteract.

You see, I’ve had that experience, too.

While I have spent 30 years working in and out of hospice, it was my own mother’s death that rendered me helpless. She was 74 when she was diagnosed with breast cancer. She was also a volunteer for hospice. Her doctor convinced her to pursue chemotherapy; something I was against. Her sister had breast cancer years before, had a mastectomy and took tamoxifen with great success, so that was my vote.

She said she couldn’t let go of her breast. She planned to do chemotherapy and then radiation. It all seemed like a lot, but it wasn’t my death so I supported her as best I could.

Six months later…

She went into the Emergency Department on a Tuesday with difficulty breathing. I rushed to be with her and she introduced me to her cardiologist this way, “This is my daughter. She doesn’t like chemo.”

I SWEAR TO YOU that is exactly how it happened!!

The doctor’s response? “Well, it is nasty stuff.”

Each day my mother was getting worse no matter what treatments they tried. Each day I saw her slipping further away. She was scared. She told me she was scared. I was scared.

By the following Sunday she was in multi-organ failure and we were making arrangements to withdraw the life support she did not consent to.

Monday her cardiologist returned from his long weekend and told us that he called her oncologist who said “some people react to chemo this way, give her steroids”. By this time, we felt it was too late.

On Tuesday we let her go. One week to the day after admission.

In the course of that week there was so much suffering and I had to mine the truth out of the doctors and nurses. If I had not had a history of hospice experience I would not have been able to ask pertinent questions that forced the doctors to start talking truth, enabling me enough time to gather important family members to say their good byes.

As it was we only had a few days to do that. We deserved more. SHE deserved more.

This is just one of a few personal experiences I’ve had with what I call a ‘traumatic death’. But even one is too many.

It is those experiences plus 30 years of professional experience that has led me to want to be a support to those who are transitioning and those who will need to learn to live without those who have transitioned.

Yes, I “make money off people grief and suffering”, if that’s how you want to put it.

When I am sitting with someone who is dying and facilitating a reconciliation with estranged family members, I am not somewhere else making money. I am not sitting with someone else who might need me. I’m not sitting at a desk doing a different job to make money to keep a roof over my head. I am not making money doing something else to put food on my table.

I am right there at the bedside where many do not dare sit. I am right there being present to the grief and suffering where many cannot be. I am right there encouraging a daughter to give her father permission to let go. I am right there holding the hand of the last member of a large family. I am right there to help children understand what is happening to their beloved grandparent.

You know how they call firefighters, ‘fire eaters’ because they run into the fire while everyone is running away from it? Well, by that formula I am a death eater (where are my Harry fans?) because I too run towards it while others run from it.

As for the making money part, I am certainly not an oncologist making hundreds of thousands with every script for chemotherapy. There is no conflict of interest in the service I provide.

I am also not a funeral home that offers jacked up prices for each and every item sometimes exploiting the family’s grief for profit by upselling.

I am also not a merchandiser who covers something in pink and claims to give a poultry 10% to some research development that despite billions of dollars has yet to market a cure.

There is no shame in my game, sir. I stand in service to the light within me to provide presence, compassion and unbiased support to those who wish it, because I did not have that when I needed it most.

Lastly, I say to you, ‘thank you’. Because you enabled me to put these thoughts into words. Without you I would not have written this. Without you I wouldn’t have known that these words needed to be said. Without you I would’ve stayed silent.

We have to get over the societal conditioning that it is acceptable for professional athletes to make millions of dollars to entertain us, but those doing sacred work must live in poverty.

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