• It’s About ALS, and it’s Dead Serious — Except When it’s Not

    by Cathy Speck

    My dad, Gene Speck, called us earlier today Monday, May 16, 2011. My brother Paul Speck, who had ALS, died today, of respiratory failure.

    We don’t know yet what all the plans are for everything — funeral/memorial service — or when we’re going up to Bend, Oregon. That’s where he and his wife Rose, their kids and grandkids are. We’ll be driving up to Oregon sometime. Flying is very, very difficult for me, with all of my oxygen equipment and other fun ALS toys in tow.

    Paul was diagnosed several months after I was, but he just started using the breathing assistance last week that I’ve been using for a few months. Respiratory failure is the number one killer for PALS (People with ALS).

    This is the very same thing I’ve been struggling with. I’ve been trying to explain to folks, without scaring you, or sounding like “Chicken Little,” that my respiratory struggles — even before the pneumonia — are borderline fatal. Either I die or I don’t, yet I did ride the fence a few times. To quote the honorable Tibetan monk, Sogyal Rinpoche, “You breathe in, you breathe out, you don’t breathe in again. That’s it!”

    My brother Paul — an athlete, writer, singer, passionate (opinionated) Sagittarius — is the only person I know who is as determined (stubborn) as I am. I, too, am a Sagittarius, and we are skilled at being diversionary. How ’bout them Kings? Let’s see, let’s talk about the hail storm yesterday in Davis — that was crazy!

    Paul’s last several emails were photos and proud comments about his adorable new twin grandsons. And the very last email to our big family was one of congratulations to my oldest sister Barbara about the birth of her second new grandson.

    But no matter how much we focus on “new life” or being strong role models, surviving ALS is not a matter of will. Positive thinking is powerful, but it doesn’t work without oxygen.

    As you might imagine, even though ALS keeps picking us off one by one, it’s not getting any easier. How terribly sad this is for our 89 year old Dad. How many more children does he have to bury (that sounds better than “burn”) Stephen, Susan, Larry, Paul, not to mention the love of his life, our mom, Dorothy? That’s a rhetorical question — please, don’t try to guess.

    On the brighter side, Paul didn’t have to go through the painfully “ugly” part of ALS: the “Glass Coffin.”

    This is a bittersweet end of a tale that will never have an “and they lived happily ever after” ending. Then again, maybe it’s just a chapter, and we’re still here reading the “Foreword.”

    Most likely, I will be writing the obituary for Paul, since that has been my familiar familial role thus far.

    Who will write them after I’m gone? Hmm… I think my niece Erin has that kind of gift, but I won’t ask her about it just yet. Erin is also my goddaughter, and is just finishing her freshman year at UC San Diego. She has so much to living to do…

    And on that note (A sharp! Erin is an A+ student), I shall continue sending this death notice to more friends of the family. For you my dear friends, I offer tremendous gratitude.

    Thank you
    Thank you
    Thank you…

    Cathy



    • Cathy, so sorry to hear about your brother Holding you and your family in the light. Erin must read this column so now she knows your choice. She sounds like the right woman for the job as you have been for your family. What a sad job. You are extraordinary to write about these life struggles.I appreciate you and your courage.


        • debra

        • May 26, 2011 at 11:52 am
        • Reply

        wow! great idea about Erin…I submitted Paul’s obit yesterday, and it will run in Sunday’s edition. All of this death & surviving folks who are left behind with the loss is morbidly is inspiring me to typo.
        I wrote great sttories/poems/songs when was 12, 13 years-old, when my mom was dying, then died. In my mid to late twenties when I was an alcoholic, severely depressed,starving and abusing me body, I wrote even better stuff. then I got sober and happy and my irritable death muse got bored and flitterd away.
        Once again, another great thing about ALS–Myrtle the Death muse is back, and so is my tip typo tapping.
        I’ll be submitting s’more soon– sorry for the “sweets tease.” Myrtle can also be quite the kidder, but she’s not on Twitter. A bit of rhyming never hurt anyone, except in Salem where “rimers” are burned at the steak house. cheers aus jus



    • What a terrible burden your family has has to carry. I pray for your health and continued strong spirit. May your brother be at peace.

      One day in the future (hopefully very distant future), we Sagittarians (I’m one, too) are going to whoop it up on the other side, cause we know how to have a good time.

      God bless you.


        • debra

        • May 26, 2011 at 11:57 am
        • Reply

        Thank you for your kind and comforting words. And you’re absolutely correct about us Sagittarians, we know how to party in this life and the next–probably the previous lives too. who knows? i sure don’t, and I’m at peace with that.


      • Jesse

      • May 22, 2011 at 9:50 am
      • Reply

      Kathy, you have my enormous love and respect, and I am sorry for the loss of your bro. WHen you said,
      “Positive thinking is powerful, but it doesn’t work without oxygen,” you said a mouthful!. Yep. I tell you…. ain’t it the truth. Big hugs and deep gratitude to you too. Jesse


        • debra

        • May 26, 2011 at 12:02 pm
        • Reply

        Thanks Jesse, it is comments like yours that keep me going, especially when I’m feeling weary. thank you for that,


      • Christy

      • May 22, 2011 at 1:04 pm
      • Reply

      Oh my God. I wish I knew what to say. I’m sorry for the loss of your Brother. To know he was diagnosed after you and has now passed, I can’t even begin to imagine all the emotions you must be having. I try to remember that any one of us could die, at any moment…we could be hit by a car. When you get diagnosed with a terminal illness you are afforded the opportunity to say good-bye, thank you’s, and even mentally prepare for the transition we will all have to make some day. None of us can stop it, but to have it be so close, so inevitable…I don’t know how I would react. Your openness, your distraction, your wit…it helps me see WAY past the ALS, and to see who you are. Thank YOU!


      • Judy

      • May 22, 2011 at 3:28 pm
      • Reply

      I’m terribly sorry about your brother. I nursed the person I loved best in the world through a long bout with AIDS. You have the wit and presence that I admired in him. You’re an inspiration.


        • debra

        • May 26, 2011 at 12:00 pm
        • Reply

        I’m sorry to hear about your favorite person and the sorrow you’ve endured. yes, I believe laughter and a glass half full are they way to go…



    • Cathy,
      Thanks for letting us share in your life a little bit. Ain’t life grand!
      Donald


      • Tracy

      • May 24, 2011 at 10:51 am
      • Reply

      Cathy,

      Your indomitable spirit and honesty in the face of tragedy continues to inspire each one of us. Bit hugs to you and your family…



    • Cathy, you’ve written a beautiful, terrible piece and I feel admiration and sorrow because of it. I’m so sorry that you and your family have had to go through such struggle. You remind me how one can surmount the physical, if not forever (or long enough), then for enough time for amazement, feeling it, living it. I wish you many, many, many easy breaths.
      love, me



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