• Living on Earth, With Mirth, Even With ALS

    by Cathy Speck

    I’m baffled, befuddled and operating with a teeny part of my brain. The rest of my brain is busy reminding me to breathe, hydrate, don’t lie down flat, and take my meds on schedule. I’m thrilled and honored to have the opportunity to use my literary skills. I get to die doing some of my favorite things.

    Sounds like a song. How ironic.

    My biggest concern I had after being diagnosed with ALS was losing the ability to talk, sing and perform. Well, that time is here, and I’m not dead yet. I can still speak, but go hoarse quickly. I might be able to eek out a song at a wedding or funeral, or castrating ceremony.

    I’d love to write something monthly, if I can keep up with the deadlines. We’ll take it one day a time. I could write about many facets of ALS, but these will be points of departure. From there, it’ll flow into dying death after death after life. Living on earth/living with mirth.

    Every column will be fun, funny and honest, bare, vulnerable and insightful. It’ll be rated “G” or “PG.”

    “Hey, Cathy Speck, what will you call the column? Macaroni?”

    How about: Speck Speaks — For Awhile.

    Ham I am, and in German, my last name, “Speck,” means bacon/ham. Did I just hear you yodeling, “old lady old lady heeee whoo, yoohoo old lady oh oh uuu lady I diddle jey de hoeo?” Which roughly translates to: “arrrrghhhh grrrrruffff,” or, “From Speck’s Vista Point Spot.” Or “Checking in With Chatty Cathy.”


    I’m typo-ing (as opposed to typing) two, maybe three fingers at a time, as I occasionally look out our patio door. Thee daffodils smile back, and the gigantic fern begs me to come out to play. (I would if I could, but we should have scheduled a “play date.”) We have a small patio — yes, a cute, north-facing patio small enough to be a large town populated by the many transient gnomes who’ve sought refuge here.

    Which has nothing to do whatsoever with my intended message. What I wanted to type is this: ALS — amyotrophic lateral sclerosis aka Lou Gehrig’s Disease — is not a popular disease. There is no cure, and no cause has been confirmed. The biggest breakthrough in research was the identification of a rare genetic mutation (SOD1), which is known to cause some familial ALS.

    This SOD1-type of ALS has been documented in only two percent of all ALS cases, but that small population is perfect for researchers to work with since they can follow…

    Oh, bother, I’m not a scientist. I wasn’t even one of those kids who played with chemistry kits. I preferred playing outdoor team sports, or being a show-off and hollering, “Hey Mom! MOM! Watch me!” as I was climbing the towering mulberry tree and jumping — while keeping my eagle eye on lookout duty for dog doodie.

    …The most common form of ALS, called Sporadic ALS, is estimated to be 90-95 percent of the ALS demographics. With large SOD1 families (like mine), researchers have a better chance at following the cells, nerves and proteins to gain more information about “what, when, why, how” the mutations are activated. This was huge breakthrough, but that was in 1993. As you can guess, we need so much more money to keep the research going strong.

    Please join me in striving to bring ALS awareness to the forefront. Join hands and vocalize our needs so that the voice of ALS is not silenced by the calls from so many of the more “popular” diseases: Parkinson’s, diabetes, prostate cancer, heart disease, breast cancer, leukemia, AIDS.

    Please spread the news, sound your trumpets, bong your bongos, wet your whistles any way you’re able and tell your congregation/friends/family/co-workers/dog park acquaintances to take a look at our regional office website: www.alssac.org

    Thank you berry much. That’s a phrase our mom used when she was teaching us how to be polite. But she didn’t say “berry.” Now she’s buried in the Davis Cemetery. Gallows humor fuels me.

    About the ALS Association

    The mission of The ALS Association Greater Sacramento Chapter is to lead the fight to treat and cure ALS through global cutting edge research and nationwide advocacy while also empowering people with Lou Gehrigs Disease and their families to live fuller lives by providing the with compassionate care and support.

    For more information on Lou Gehrig’s Disease visit www.alssac.org; 2717 Cottage Way, Suite 17, Sacramento, CA 95825; (916) 979-9265, (916) 284-8299; fax (916) 979-9271.

      • David Lacy

      • March 20, 2011 at 8:28 am
      • Reply

      We know you’ve been sharing your story with others for awhile now. Thank you for continuing to tell it.

      And welcome to the iPinion family.

      • Jesse

      • March 20, 2011 at 8:38 am
      • Reply

      Cathy Speck, you are spectacular. Thank you for sharing your insight. I just learned a lot about ALS from you. Thank you for sharing your wisdom. Jesse

    • Cathy, Please don’t feel so bad. You could have been stricken with what I have. I have a severe case of D.U.M.B. and it’s goalong antisocial A.S.S. A tipicality of D.U.M.B is the fact that around 2,000 left-handed people die annually due to improper use of equipment designed only for right handed people.Ann Boleyn, a sufferer of D.U.M.B. was said to have three breast and six fingers on one hand. Many politicians have D.U.M.B. and would rather spend billions on weapons development than medicine reasearch. How D.U.M.B. is that? There is no honor in D.U.M.B.

    • CLARIFICATION: Ann Boleyn’s breast were on her chest, not on her hand. They were-Oh nevermind!

    • Thank you so much for sharing your LIFE with us, Miss Cathy. What perspective you give. So many of us take life and time for granted, yet none of us are guaranteed anything. To live with an active appreciation for what matters…well, you are giving us a gift.

      I am so sorry for your struggles with this disease.

      God Bless.

      • Cherie Felsch

      • March 20, 2011 at 9:18 am
      • Reply

      Hi Cathy-Debra (Winters Express and Davis Enterprise) sent me an email to let me know your first article would be posted on ipinion today. You are an amazing and inspiring individual…..forever maintaining your sense of humor. The sense of humor was one thing that my Dad, Keith Cross, maintained as well as he fought ALS. Your willingness and ability to raise awareness about this cruel and devasating disease speaks loudly and I believe that people are beginning to hear and understand the difficult road one has to travel when diagnosed with ALS. If you need anything let me know. Love you Cathy. Cherie

      • Hi cherie, I don’t know how many times you’ve heard me say this, but it’s true—now more than ever! ALSSAC helped me change my path, and it continues to light the way for me as I live my final months/years smiling and laughing while raising awareness for ALS, thank YOU Cherie!
        love, Cathy

    • i am in awe of your soul & heart & life. thank you for using every single bit of you so that each of us can be bigger & bolder & braver people.
      thank you so much cathy.
      thank you so much.

    • Welcome and thanks for sharing your story and information. Also, your humor clearly comes through and I appreciate the seriousness of your disease with your ability to think with humor. You brightened my morning. I am holding you in the light.

    • My mom just read your story about ALS and it made me feel sad.
      I remember going to coman grounds and watching you perform. My favorite song was White Dogs. I’m sorry you have ALS and I’m happy that you are telling people about ALS and not staying silent. I don’t know what else to say. I care about you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!?!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

      From Alex Weinshilboum

    • I am touched by your strength for life. Thank you for Cathy for sharing who you are with us. It seems part of your gift for coming to earth is to teach us to be grateful no matter what our circumstances. You show us how life looks through your eyes. Sending you light.

      • jenella Loye

      • March 20, 2011 at 11:19 am
      • Reply

      Hey Cath, so nice to hear your voice again. I have missed you so much at the coop. My cousin had ALS for only a year, we miss him too. Thank you thank you for staying out there in the front of everything and bringing us along with you. Rock on.

      • Norbie Kumagai

      • March 20, 2011 at 12:43 pm
      • Reply

      Hello Cathy: Even as you are describing your struggle with ALS, you always manage to elicit a smile or a laugh. I attended the DHS alums versus varsity women’s basketball game awhile back to see you in action.

      I posted a link on The Amazing Awesome Jenna Templeton’s fb page to your article, simply entitled “Cathy Speck, In Her Own Words”.

      Speaking of gallows humor, our younger brother Arno (DHS Class of ’76) would occasionally answer the phone, “Kumagai’s Mortuary, You Stab Them, We Slab Them…” One day the Dean called (our Dad was on the faculty at the U.C. Davis School of Medicine) and apparently Arno’s greeting made the rounds…

      And now Arno’s an Endocrinologist at The University of Michigan School of Medicine… Go Figure.

      Look forward to hearing Duvall-Speck again in the not too distant future. With Much Love, Friendship & Huge Hugs!!! Welcome To The iPinion Family!!!


      • Keltie Jones

      • March 20, 2011 at 5:04 pm
      • Reply

      We moved away from Davis before ALS really started to affect you – hearing the limitations you work with now is humbling. I am so amazed by your humour and tenacity. Please know that your song “Kiss me in public” runs through my head regularly – whenever I kiss my wife in public 🙂 Thank you for being an inspiration for us – and for continuing to be an inspiration.

    • I got all misty eyed, reading the comments to Cathy’s column. I think welcoming Cathy to our iPinion family has been the highlight of our entire experience. I love what Hollye Dexter wrote – Cathy is sharing her LIFE in these columns. So very glad she is taking the time to do this in the time she has left.

      You go, Cathy! 😀

        • debra

        • March 23, 2011 at 9:44 pm
        • Reply

        hi debra, I don’t think i’m doing this right. Is this where I respond to readers’ comments? Sorry i’m such a ding dong in the world of technology, and simple typo-ing.
        cheers & chorizo,

    • Thank you Debra for your column featuring Cathy Speck. I am glad to learn of the iPinion community. I fondly remember the Duval Speck appearances at Rancho Yolo. You are one awesome lady, Cathy. Life is not about how many days we live, but rather what we choose to do with those days we have. In this human experience whatever number of days we are allotted will be like the bat of an eye in the eternality of time.

      Love and blessings to you.

    • Cathy Speck,

      I LOVE reading your insights, your thoughts, your humor. Even before having ALS, you inspired me to be live lightly, to laugh at shortcomings, and to be in the moment. I better stop writing now, or other people may get the impression that I am a HUGE fan of yours.

      Love and kicks,


      • Kari Peterson

      • March 22, 2011 at 10:00 pm
      • Reply

      Fantastic! Can’t wait to read more from Cathy!! The reverence you have for life comes through in every sentence; that is such a lesson and such a gift. Write on!

      • Bette Marley

      • March 23, 2011 at 4:05 pm
      • Reply

      Cathy, Just found this site from Debra’s column in the Winters Express. We never got a chance to meet as I left the area. My husband, Eddy Safreed, died from ALS in Nov 2004. We lived in Winters and Cherie is a friend of mine. I did some work in the ALSSAC office for a little while. Just wanted to tell you how much I enjoyed your column and hope you will be writing some more, and I want to thank you too for all you do to get the message/awareness out there. You have a fan here in Oregon!

    • Hey how come you get so many replies to your column? You’re not paying them are you? I only get one or two and most of the time I have to write them myself and use some fictional name. I would hope that before you get too sick, you could write something to straighten up the rest of the world first.Also, tape record some snide remarks to keep your loved ones from coming over to my house to rough me up. I’m old and feeble and I don’t live in winters no more. I live in Alaska next to the bay of Biscayne or someplace like that. Where lewis and Jacob discovered the north pole. So if they want to rough me up, send them to NY. OK

      • Alright Donald, here’s my secret: you know how you collect rocks? Well, I am a rock star,or should I say “was?” My wife and I had several popular bands which played in Davis, Winters, LA, SF, Lake Tahoe, Massachusetts. We gained many fans and friends throughout the years.
        Now, I no has been because I’m just beginning…again.
        That’s all the serious news I can offer today. but more rock n rollin’ (on my walker)will come a’knockin’and rrrockin’ your way soon.

      • Laddie

      • April 2, 2011 at 9:21 pm
      • Reply

      I love you, Cathy Speck, forever and ever amen. Feel better, precious person of the universe!!!

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