• Writing your own obituary isn’t morbid

    by Cathy Speck

    Cathy holding her own urn.

    I’m not morbid.

    I’m not!

    Nor am I obsessed with death and dying. It just looks that way. Okay, maybe I do write more about death and dying than the average lesbian. What? Where did that come from?

    Here’s the deal: Because I am an “out” lesbian and LGBT activist legally married (in California) to my wife Linda, and I’m “out” about dying from ALS, a disease that has been called “the most “cruel and horrific disease, I am asked to tell my story in many venues. Writing for iPinion is kind of like public speaking for me — I love both. I love being on stage, entertaining and educating people while feeding off the energy from the “live audience. (See? I talk about live things too.) I also love totally immersing my mind and fingertips into a whirled world where my written words feed off the “live ” monitor.

    (See? Live again.)

    I recently joined a Facebook group for PALS only — PALS is an awkwardly sweet acronym for “person/people with ALS.” When we first join the group, we tell “our story” to the rest of the 100 or so PALS. It made sense to me to just cut and paste my obituary. Yes, really. Over a year ago, my close friends and family asked me to write my own obituary since no one would else would be able to catch my spirit as well as I could. So, hmmm, does that mean they think I’m self-centered or full of myself? Harrumphff.

    The funny thing is, when I shared my obit with them, they pretty much said, “What? This is it? It’s so… bland; it doesn’t really describe who and how you are.” Funny. Can you imagine writing your own obituary and making yourself look like some sort of big deal hero, recipient of so many accolades? That just feels slimy to me. So, for now, it’s a bland obituary and I sent it to the PALS Facebook group.

    Just for the heck of it, I peeked through some old emails that people had written about me, or to me. Gawd, does that feel good. Maybe I should ask others to spice up my obit and give it some color commentary. (May I remind you, here, that I am absolutely not morbid?)

    I’m sharing with you now, some letters that help remind me that I really do make a difference. And that even though I can’t do what I use to do, and my energy is so limited, people still see and hear and love the true Cathy Speck.

    But first, I want to address the folks who are praying for a miracle, hoping for the improbable: It’s okay to keep wishing and hoping for a miracle that Cathy Speck just might be the one to beat ALS.

    That is what I wholeheartedly believed about my mom. No one knew anything about ALS back then (1972) except that there was no cure and most people die within two to five years upon diagnosis. But my mom was unbeatable — she didn’t even get colds. At the raw age of 13, I was cruelly taught that my belief in something didn’t “make it so.”

    But I’ve learned how to extend my life by experiencing my mom’s and two brothers’ dying process. None of them opted to use breathing assistance. It wasn’t really available for my mom, but she did refuse a “vent.” We’re glad she did… now. My brother Paul did try it, but only for a few days, then didn’t bring it with him to the ER in Bend, Oregon, and died outside the ER emergency exit door. Is that a quirky metaphor or what? My brother Larry didn’t want to do anything except let the ALS take him quickly. And it did — two and-a half months after he was diagnosed. So, I’ve survived ALS longer than any of them (including Aunt Mary who died of ALS at age 54.)

    But, as positive as I am, I’m also very aware that I can die each night as I go to sleep with my mask on and my hospital bed tipped up higher than 60 degrees. It doesn’t take long to die when you stop breathing; I’ve done it, almost, a couple times. They’re called NDEs. Near death experience. One was terrifying, the others were glorious. Death is not horrible — well, maybe it is for the living people still on Earth.

    I love living, I’ve had a great life, and I’d like to keep loving and laughing. But the breathing augmentation that has kept me alive so far, is as far as I will go. I have the official paperwork that says: Let me go.

    So, each day is a bonus. Sure, it doesn’t always feel like an enjoyable bonus. Some days the pain is almost unbearable, and I’m talking about something as simple as having a bowel movement. I won’t go into the bloody details, and I do mean bloody.

    Geez, I didn’t intend on going so far with this… La la la la la I can’t hear me la la la la…

    As ALS takes more of my energy , I spend more and more time at home alone, which of course, is not how I’ve ever lived my life. Being able to write (typo) and read reminds me that I’m still a connected member of our local community, as well as communities all over the world. This is exciting. It helps me stay alive.

    Enough already!

    Here’s an example of an email that motivates me to get out of my recliner. It’s from Joanne Moylan-Aube, a professor at Sac City College. She teaches “The Psychology of Death and Dying.” (I am not

    “Dear Cathy,
    I have been reading my students’ finals… a summary of their journals while taking the Death and Dying class. I am going to try to summarize for you some of the statements they have shared about your appearance in class when I am done reading them all. But… I am compelled to share with you this one that was pretty amazing. She wrote about being a pessimist and that she didn’t really value life much.
    She writes, ‘I was in denial after that day, but then Cathy Speck came in to speak. That was when I had to bear the weight of my emotions like a grown up.
    Cathy Speck will always live in my heart because she was the turning point in my life. She showed me the warm, loving part of life that I had chosen to forget. I believe hearing her speak was destined to happen and this moment is the most important moment so far in my life. It’s weird that a stranger could change my life so much in such a short amount of time. But she changed everything inside me, and for that, I am grateful.’
    This is just ONE comment. I will send some more jewels when I’m not too sleepy. You really rocked their world, opened their eyes and hearts, and made them laugh as well.”

    Okay, it looks like we’re just about finished here, and, no, I don’t mean dead finished.

    Someone I’ve worked with for years at the Davis Food Co-op recently moved to another state, and sent this to me moments after she left. I didn’t get permission to use her name, so I’ll call her “Annie — Annie Moss.”

    Annie says:

    Cathy Speck is fearless.

    Cathy Speck is a tiara and pink feather boa on an overhead page announcing, “This is the QUEEN!”

    Cathy showed me how professionalism and silliness are not mutually exclusive.

    Cathy Speck is out and proud about EVERYTHING — loving women, being an athlete, recovery, being a goofball, dying, singing and songwriting, false teeth. Who’d a thunk she was raised Catholic, because there is absolutely no shame in her game.

    Cathy Speck is brave. She stands up for what she believes in, whether it’s marriage equality or ALS awareness or occupational safety.

    Cathy Speck cares because Cathy Speck loves everyone.

    Cathy Speck once said to me, as she said to everyone she trained in Safety at the Davis Food Co-op, “You only have one body.” Those words have always stuck with me. And while ALS lays waste to Cathy Speck’s body, the only one she’s got, the one that’s been a basketball star and a rock star and a Co-op star and a living angel, she makes use of what strength and breath she’s got left to keep speaking, singing, and loving, for as long as she’s able.

    Cathy Speck is my hero because she’s authentic, and the struggles she’s lived have only increased her capacity for compassion and love and hopefulness. Cathy Speck’s body is dying, but Cathy Speck’s energy will keep living on. She spreads love on the world like Earth Balance and organic apricot jam on a crunchy slice of whole wheat toast from a local bakery.

    And the lives of everyone she’s touched are the tastier for it.

    There is my eulogy from me to you. Thanks for sharing your journey, your silliness, and your love, Cathy Speck.

    Love, Annie

    For now, the more humble obituary I wrote is the only one that’s official, you know; I gave it my stamp of approval.

    Think about it. If you to wrote your own obituary tomorrow, would that be how you want to be remembered?

    And no, it’s not morbid to think about it.

    • My dad had my sister write his obit and then he edited it almost to the day he died. It was exactly what he wanted. At his funeral we told his story, his way. He controlled until the end. My older son gave the eulogy for all the grand kids and it far outweighed the one my dad wrote for himself. i have bought my plot and feel so much better knowing where I am going while I am healthy. It took a burden, I felt, off my kids. I love your words Cathy and it was s joyful meeting you. Your words will long outlive you and carry the sweetness of you with all of us forever. You are sure giving it the good fight and I await every new word you write.

      • Valerie

      • August 12, 2012 at 12:56 pm
      • Reply

      I enjoyed reading this. For me it raised the question, ” would I want to be remembered by what others think of me or by what I think of myself?”. Hmmmmm.

    • Cathy, I still say that in writing about dying, you are really writing about LIVING!

      • Kelvin

      • August 13, 2012 at 3:35 pm
      • Reply

      This is brilliant. You’re not morbid at all. Your passion for life comes through loud and clear. 🙂 I’ve never thought about writing my own obituary because, to be honest, I’ve never given much thought to life after I’m dead. I’ve always thought what people want to do, how they chose to remember me was in their hands. But this makes me want to give them a little direction. LOL

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