• Living and dying are the same concept

    by Cathy Speck

    Someone recently said to me, “I don’t see a dying person, I see a person living fully.” What she saw/felt/feels is exactly what “dying” is all about — for me. Living with ALS (for about three years now — most people live three to five years upon diagnosis) has taught me that living and dying are the same concept.

    The moment we’re born, we start to die. But it is not negative, sad, morbid, morose, vanilla or Ben & Jerry’s Cherry Garcia. When we “understand” that we’re dying, we realize that we can choose to live each moment as fully as we want.

    If I’m in a traffic jam, oh well, I can’t do a darn thing about it, and this gives me more “visiting time” with whomever is driving with me. Or we can listen to our favorite CD, or read bumper stickers out loud, or make words or acronyms from license plates. Getting pissed off at traffic (then being late) only makes the experience more stressful; then we spend precious energy being mad about something we cannot change.

    Each moment, we can choose how to respond or feel about anything that’s happening near/with/to/for us. Did someone just flip me off? That’s okay by me — it’s their problem, and I’m glad I don’t have to let my life be bothered by their actions. When I’m feeling really strong, and if I have time, I also reach into my core, breathe deeply and wish for that person to heal. No, I’m no angel, and this might sound too “something-ish,” and I certainly can’t maintain this attitude all the time. It is however, my intention is to think/feel/behave this way.

    I’ve been an activist/advocate most of my life, even in elementary school (but that’s another story). My anger fueled me to get out there and make things happen, git ‘er done, be the change. And anger also kept me alive at times when depression was simmering and infiltrating my being. It’s easier to feel mad than sad.

    I’m now learning how to be an activist/advocate without using anger as fuel, or purpose, or as a tool. I accept that life ain’t fair; nobody ever said it was. But I believe that I can still make a difference or “be the change” by using positive energy, thoughts and words. For example, I know this might seem hokie, but what the hell: My family and friends have asked me to write my own obituary, and that’s great, because I was planning to do that anyway. So far, I’ve written obituaries for my two older brothers and one of my older sisters. I also wrote one for a Davis Co-op co-worker. I guess I’d better get crackin’ on that, because each night when I put my mask on, Linda and I both know it only takes a couple minutes for something to go wrong, and then… I’m gone.

    You know how most obituaries say something like “Patty died after a courageous battle with breast cancer.” Well, no, most obituaries aren’t for someone named Patty who had breast cancer. I’m referring to the language: “courageous battle.” It just seems to me that the meaning behind those words has been so diluted, there’s no substance. It’s kinda like people saying, “Hi how are you.” “Oh, I’m dead, but I really did put up a good fight. Those stinking chemo treatments really put a dent in my schedule.”

    Wow, I lost my train of thought, so I followed the crumbs back to find the original seed.

    I was talking about “making a difference through thought and words.” In my obituary, I will not write “She died after battling ALS with courage and fought and beat it with billy clubs or guns and knives, and mean faces and swear words.” Nope, I don’t yet know exactly what it’ll say (especially the date) but it’ll be something like “She died with ALS”… No, I don’t like that one. Ummm… “She died of ALS, the same disease that took her mother Dorothy and brothers Paul and Larry.” (I can’t add my sister Susan because that was never determined.)

    Or I might say, “Cathy had ALS for over three years and died on Tuesday, June 19. Blah, blah, words, names. All are invited to Cathy’s Re-birth Party.” Or should it be “Re-birthday Party?” Whaddya think?

    I already know what I’m gonna do with the ashes, and my best friend’s brother-in-law is making my urn that I helped design. It looks kinda like a pyramid, but made of cedar wood, and the felt inside will be royal blue.

    Ashes will be available for people to take home as “party favors.” I bought a whole bunch of the pastel plastic Easter eggs that open up when you twist them in the middle. I’ll have some ashes in something like a punch bowl on a table, so those who wish to take some of me home can scoop a bit of ashes into their egg, and then do what they want. Eggs are obviously symbolic of… omelets, which I love. Ha! Yeah, the symbolism is all there. It’s gonna be a grand party, and we’ll all have a gay ole’ time.


      • Hollye Dexter

      • March 11, 2012 at 11:03 am
      • Reply

      You are a brave woman, Cathy. For now, you live an inspiring life. You’re right, we are all dying…who knows when. It’s how we live that matters. If you get to the other side before the rest of us, come back and tell us what it’s like, if you can. Love to you….



    • You live better dying than most people live, EVER.
      Love you. 🙂



    • Cathy, I agree with Debra. You do give dying new meaning as you are so refreshing. I had a friend die at 34 leaving a very small son and a wife. They divide ashes in 10% where she went and she tried to get just 69% in one urn and the rest in increments to give out. He had birth parents and adoptive parents so everyone wanted in on the action. His male friends took some in an egg (like the ones your describes only softer and went to his favorite gold course and you know the rest. I have planned my whole funeral and my sons know what I want down the service and thoughts I wrote down. It will be a hootenanny type of events with no religion at all and just friends sitting around at the Jewish cemetery telling stories. Then in the ground in the plain pine box and next to a bubbling fountain (can’t get bubbling stream) but next closest spot. It gives me peace to know all this is in place. I love your bravery and your living. It truly speaks so much to your soul and strength. Can’t wait to meet you.


      • Jesse

      • March 11, 2012 at 6:27 pm
      • Reply

      I just read a book called “The Fault in our Stars” and it is all about the death/life drama, but with a cast of teen characters. I really do think we are always in dying and living balance with a final balance that comes eventually. It’s that balance that we do remember from before. However for now, we are making a difference, specifically, you are making a difference. Hugs and kisses, Jesse



    • I’m not ever gonna die.



    • Umm ,uhh, i have so mcuh to tell…Hmm,its 1:12am, and I’m asking my laptop for ideas that I do NOT want to forget when I’m speaking at Sac City College (in Sac)this Wednesday. It’s a presentation being offered by the class of “The Psychology of Death and Dying.” And yes, it…’s FREE. It’ll be pretty much stand-up comedy,but I might have to sit down on my walker if my legs get all wiggly. Y’all are welcome to come hear me talk about myself (wah wah wah) & show a bit of me skydiving, being a rock ‘n roll star, and an LGBTI activist, and I’ll play from our first CD, a sad song that I wrote about 20 years ago from my mom’s perspective . It’s about dying and being dead after ALS took her last breath, and never gave it back. How ironic right? Who knew this song also would become my song? ALS strikes again!
      Ennyhoo, if you’d like to come, you can choose 10:30 to 11:45, or noon to 1:15 The class is more like a lecture hall: L 101. Parking can be a beeyatch, but you can try parking in William Land Park which is directly across the street of Sac City Colleg main entrance.

      The lovely and helpful Alycia Cahill from the Sacramento ALS office http://www.alssac.org will have ALS brochures ‘n stuff at a small table near the class. Oh no, it is now 1:30am Time for me to put on my astronaut gear and moonwalk into my bed. It sucks not being able to sleep ‘n spoon with my wife Linda in “our”bed. I stay alive by
      sleeping in my hospital bed set up at the “perfect” angle for my breathing and stuff..It is now 1:33. See ya soon!See More
      http://www.alssac.org/
      http://www.alssac.org


      • Carolyn Wyler

      • March 13, 2012 at 3:18 am
      • Reply

      You are a brave amazing person Cathy. Thanks for the inspiring words on how to live and die and keep it all in balance.


      • Arry

      • March 13, 2012 at 9:16 pm
      • Reply

      Thank you for sharing Cathy, I knew your sister Susan, sorry for the ALS legacy in your family. Keep living the life you deserve.



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