Cathy SpeckColumnist, Photographer
- May 2, 2013 in Columnists
Fantasy obituaries, free — reality obits, an arm and a leg
Let’s play pretend. If you don’t pretend, you can’t play with me — I have all the toys. Pretend you have a terminal illness, the kind that’s cruel and progressive but you still have enough time to write your own obituary. Just for fun, take a few minutes to imagine how you might want your life portrayed in your obituary and where would you want it to be published.
I don’t have to pretend I’m dying. I have ALS, and we have already lost four family members from a rare type of ALS, identified by a genetic mutation: SOD 1 exon 5 E133 A.
I am a “writer” of sorts, and I wrote the obituaries for my siblings: Susan, Larry and Paul. At the age of 13, I was too young and devastated to write the obit for my mom, who died of ALS at age 52. Oh, I didn’t write baby Stephen’s obit either because I hadn’t been born. I had a “womb with a view” but the windows hadn’t been washed in years.
My wife, siblings, my best friend and a few close friends suggested that I write my own obit, and I did. I left out the date of my death, and the location and time of my “re-birthday.” Still waiting for some details.
In the last three weeks I’ve been to three funerals, two for my ALS friends. It’s real, this dying stuff. I’ll be smiling all the way to the Light, yet I am so sorry that I’ll be leaving you behind. What if you write an obituary for me but you just keep it for yourself? Maybe that could aid in your grief and mourning. Gotta keep trying.
Anyway, back on topic about writing my own obit: After gathering my facts, dates, names and correct spellings, and being sure not to hurt anyone’s feelings, the rest of the obit practically wrote itself. Just the facts, ma’am, just the facts.
But after my friends read it, almost all of them were disappointed and weren’t satisfied, and said it “didn’t truly describe the big essence of Cathy Speck,” and it didn’t convey “my story.”
Because I have written several obituaries and know how much it costs to run obits in the newspapers (it ain’t cheap) I wrote an “inexpensive, generic-ish obituary” for myself. I think it’s fine.
The real good stuff will come out at the party, when people can say anything they want, or they can write in a guests’ commentary book. If people feel compelled to write things on the walls in restroom stalls, please use dry erase pens, or tape blank sheets of paper on the stall walls and let the artists’ catharsis begin. Please let it flow — do what you need to do to begin letting go. (This was not a reference to toileting, although the temptation was … tempting.)
And of course, Dr. Laura Marsh and/or Debra LoGuercio DeAngelo have dibs to write a screenplay, with Charlize Theron cast as Cathy Speck. Either her, Jim Carrey or Jane Lynch.
And shhhh, for the last year or so, I’ve been secretly creating “Death and Dying: A Musical Comedy with Cathy Speck.” My speaking presentations at Sac City College were kinda rough drafts for how the show could flow. Well, that’s not exactly true. When I speak to classes/audiences, people in the mirror, the words just gallop and stumble out of my mouth in a rather, cute, gallows humor way. And that’s kinda how this one-woman show would unfold, except I’d use lighting, and my props would be better organized. The show, of course, would be a FUNdraiser/awareness event for ALS.
Back to the obituary. (How often do you get to use a line like that? Should I typo it again, just for laughs? Rhetorical, no need… blah blah, boo hoo.)
I’m thinkin’ almost everything else involving my death is ready to go and pre-paid, but I still need to show a few more key folks where everything is filed or shoved in a box on the top shelf of the hallway closet. (I don’t go in the closet — never again.)
“Taking care of business” assures me and my loved ones that when I die, their energy can be focused on supporting each other, rather than running around at the last minute (or after The Last Supper, and dessert, ha ha) and quarreling: “she wouldn’t want that,” “she told me not to forget,” “but I want to have it catered…”
“Taking the guided tour” on my after-death trip up Memory Lane with my cremation liaison was quite fascinating. I truly felt comfortable and calm as she explained how the body is treated from the moment of death: transported to the cremating place, put in a temporary urn; then, who picks up the urn, has possession of it, and who gets to choose how many ashes they want before they’re up for grabs; how the cremains will be displayed at the party. And oh yes, making sure we have enough Death Certificates for all the legal schlemeezel paperwork at the end.
And now, we are finally back to the beginning — the beginning that was initially going to be “the beginning” because it opened up “in your face,” which itself was a warning for anyone who isn’t “ready yet” to be real with death.
One of my Facebook friends casually mentioned that he didn’t like how obituaries generally use over-used cliche’s. Hmmm … even that was over-used, used over and over again. It kinda feels like that when so many of our ALS friends are dying. Please note that when someone dies after the body has been cruelly ravaged by ALS, death can arrive with blessings of peace and hope for healing.
Yet, the obits can unwittingly disturb our sad but calm relief when the written descriptions of how we lived while we were dying seem almost meaningless.
I posted this comment about writing obituaries to my Facebook friend with ALS: “I intentionally used truthful descriptions, with no flourishing euphemisms — and away with the cliche’. You won’t see any phrases like: lost a courageous battle with ALS; battled with ALS for two years; bravely fought; fighting ’til the very finish; gave the good fight; finally succumbed to ALS. I’m sure as heck NOT fighting ALS — it’s in my body. That’s like being my own punching bag. No thanks. I’m doing just fine without that violence chasing down my motor neurons.
BTW: If I get enough requests to show you my obituary, and the photo I chose, I will do it fer shur.
BBTW: Check out my Blong (Blog + song = Blong): www.cathydyingaslivng.com
Our songs are on: www.duvalspeck.com
Cathy Speck, a Davis, California native, still lives in Davis with her wife, Linda Duval, and Mazie, the amazing monkey-face pug/poodle/terrier princess. Their duo, DuvalSpeck, was a regional musical favorite for years. Now Speck is dying from ALS (Lou Gehrig’s Disease), and can no longer sing. While she can’t express herself in song anymore, she can express herself in words, and is spending her time raising awareness about ALS. Cathy was diagnosed in 2009 with ALS (Amyotrophic Lateral Sclerosis) a fatal neurodegenerative disease. Genetic ALS is extremely rare. The Speck family has the SOD1 genetic mutation, which means all siblings and their children have a 50 percent chance of inheriting the mutation. The Speck family has already lost four family members to ALS. ALS affects an estimated 350,000 people worldwide, including children and adults. Most ALS cases are sporadic — anyone, anywhere can get it for no apparent reason. The majority of patients die within two to five years after diagnosis. With ALS, people progressively lose muscle strength until they become paralyzed and can no longer move, speak, swallow and breathe. About 90 percent die from respiratory failure. There is no cure. “These people in the prime of their lives and the peak of their productivity get this devastating illness that kills them,” said Teepu Siddique, MD from Northwestern University where the Speck family has donated DNA for research.
- May 2, 2013 at 11:37 pm
- August 24, 2014 at 5:12 pm