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Center stage death bed

My father picked his date to die, and planned the most circus-like funeral I'd ever heard of...complete with costumes, dancing, and jokes.

Photo of Tia Ma
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     Western culture trained me well to deal with death: I should show embarrassment, apologize profusely and quickly drop the subject, but my father didn't buy any of that crap! After a lifetime of expressing fiery creative energy, he wanted a GRAND FINALE! The jester in him wanted to pull the red stage curtains open, thumb his nose at the rules, and turn his death into art.  

     "2 weeks ago I went to the Mayo clinic and they diagnosed me with ALS aka Lou Gehrig's disease. Life expectancy is 3 to 5 years. But I am not going to wait for the disease to run its course. I've chosen to use Oregon's assisted suicide program administered by the Compassion and Choice organization."

     My father wanted to die in the middle of a rocking party, inside a theater piece…. with him as MC, as Star, as the director and producer. He asked me to be his stage manager, set designer, DJ, and promotions editor. He began to direct, “So, there is a lot to do, we need to contact the doctor and the lawyer and the Compassion and Choices advocate”, (Compassion and Choices is the Oregon based group which helps families go through the Right to Die process). He described a precise recipe of getting doctors approval, lawyers signatures, waiting fifteen days, getting the doctors approval the second time for the process to be legal, not murder. The laws are set up to check the mental stability of the patient.

     List after list of what was left to be done in his last three weeks were made: emails to write, books to order, money to donate, organizations to contact. He had two speech’s to finish, as well as gather the right people near to receive their homework. We had to call his legacy catchers: in the gaming world, in the conflict-resolution world, in his mime world. He had friends to hug good-bye and books to sign. Then we had to plan the fabulous party he was going to throw —it would be his last hurrah, his  last performance! He had so many details to work out for his party: who to invite, what food to have, how he wanted to spend his last few hours alive on this planet. He knew the music he wanted, where the audience participation came in, the best lighting for where the video cameras would be set up. He assigned each member of his writers group to write a piece. He wanted his mime troupe to preform, random jokes from friends, but of course he would tell the very last joke!

     He wanted people to be able to share from the heart, but for it to be fun...complete with party horns and blow out whistles, shots of Jamison for everyone while he drank his lethal medicine. He wanted to die in front of sixty of his close friends, and then he wanted us all to go back to schmoozing, drinking, even turning up the music loud to dance around his cold, dead body. 

     I posted my Dad’s death adventure as it unfolded, transparently on social media. I noticed something magical happening the more I shared. I posted the fact that he was gifted with choice, and empowerment in his last days— legally. He was able to have an “Assisted suicide”, living in Oregon. Being honest about death felt exhilarating, even if some of our friends were shocked that we were mentioning the unmentionable, and then laughing our asses off.

     My in-box filled with private death stories: death of a parent, death of a child, resistance to dying. My Dad’s joy in his own dying process, had folks looking at death in a new light. People kept thanking me for my strength to articulate. They didn't realize it was from them reading my words, that I was finding my strength.

     The ways my Dad spent his last days on this planet fascinated me. Sitting in his chair, he was going through old journals, reviewing his writing log, staring at pictures of himself on his altar, and contemplating. He was dying. He had lived hard. He was savoring all that he had accomplished. I sensed no resistance in him. Even as he shakily used his walker, there was a jovial sparkle in his eye. A mischievous grin, like he knew the punch line to a joke that I didn't. Here was a man who had the luxury of saying good-bye to the most important people who had touched him.  And he was savoring the stories of his life with every good-bye letter we sent out.

     With his 5 pound weight, he’d pump his biceps as he dictated his words. He was nervous he would become paralyzed before the time of his hastening (drinking the lethal medicine). Their whole western wall overlooks the Pacific ocean, and is all windows, so as I wrote my father’s last emails, over and over again, I would watch the light on the waves while he thought of what to say next. I breathed in the sound of the sea lions barking their opera, as my father whispered his “Thank you, have a good life, good-bye forever, Love, Richard, letters”.

     We certainly did not get to write everyone he wanted to. It was an exhausting sport. He used the last of his lifetimes energy to remember, to be grateful, to account what happened, and I was scribe. Translating the final words of a great teacher and inspired jester felt important. My blood was mercurial as I typed.

“Tia, hand me the calendar. So, what day should I die?”

     I handed him the calendar, in awe to hear that question. “The first day it could legally happen would be March 26th, but that is a Wed. Should I wait till the weekend? More people might be able to come?”

     This here, was power. This was freedom. This is what the word dignity is all about. My Pa had the choice to pick his death day, to plan his funeral that he wanted to attend. It brought such an empowered sense of calm to him. Plus, it gave all of us a date, a countdown, which I found extremely comforting and decent. It gave me a new insight to the limbo folks must go through when the death of a loved on drags on and on with suffering and the unknown.

     We designed his finale celebration: we wrote the Mime troupe, to inform them of the piece he wanted performed (his death bed on center stage). We coordinated the roles, the narrator, the costumes, the props. He was going to crack little death jokes he had been collecting, and ‘work’ the audience one last time. He arranged for the video equipment,  and the large speakers to be delivered. He was adamant that his death should be posted on YOUTUBE.

     Smiling at him, shaking my head in disbelief, “Ummm, actually Dad, no one really wants to watch you die on Youtube.” (It was an an assumption, but I thought it was founded).

"Well why the hell not?” He coughed out, laughing.

     He wanted to benefit the Right to Die movement. He wanted to share his joy. He wanted to encourage people to fucking relax about dying.

“People take dying way too seriously Tia!”

What is a provocation or insight that might inspire others during this challenge?

Death can be fun!

Tell us about your work experience:

I am a Licensed massage therapist, Galactic Geisha and an Author. My first book "The square root of dignity" is the complete adventures of my fathers death, (currently looking for my publisher).

If you participated in an End of Life Storytelling Event, tell us which Chapter or city you came from:

Yes we held our event May 28th in Gainesville, Florida.


Join the conversation:

Photo of A.m. Harman

What an incredible story! He must have been an amazing person.

Photo of Tia Ma

Thank you. He was a force, it's true.:-)