• Gratitude, guilt, and fighting for Barbie

    by Cathy Speck

    Me reaching for Mother Nature a year before diagnosis.

    Happy Month of Great Gratitude to all iPeeps. And you too!

    I am sharing with you a letter of gratitude that I wrote to my childhood friend a few days after this year’s Walk to Defeat ALS on Oct 6. What started as a simple “thank you” note transformed into a much more meaningful letter. Divine transformation? You be the judge, or not.

    (I changed some names and gender references to protect… ah, just because I felt like it. It’s all true.)

    Dear Debbie, I was so grateful and happy that you and your brother came to the ALS Walk. I can understand why you wanted to clarify and apologize for your dad’s letter. I appreciate that you both want me to know that his views/opinions are not yours. I sincerely understand that, and I ask you to trust that I have no ill-feelings about any of this.

    I did not consider your father’s letter to be cruel, spiteful or insulting. He was writing from his heart through his religion, where he finds his truth. (He donated a generous amount to The ALS Walk fundraiser in honor my mom, Dorothy Speck, who died of ALS near Christmas 1972. He made it clear in the letter that his offering was in my mom’s honor, not mine.)

    These situations have been part of my life since I publicly “came out” at age 17 during my first year of college. It took me more than a decade before I didn’t feel hurt from verbal/emotional harm or physical threats. As the decades go by, I feel more compassion for those folks who can’t/won’t open their minds and hearts. They are missing out on a fountain of compassionate love. When we discriminate, ridicule others without “proof” that they are harmful to us, we shrink our capacity to live and love fully. I too, finally took responsibility for my biased, prejudicial ideas and actions about six or so years ago…

    Curious? Okay, okay: My Catholic upbringing taught me that “active” gay people are unnatural sinners, perverts, possessed and tempted by Satan; I finally left the Pope and his church for good before I turned 21. Of course, some of the Catholic “guilt” and other harmful claims still haunted me, so then I drank myself almost to death. (Did you read the Davis Enterprise article? See link below.**)
    I tried church-hopping in various Christian churches, but was repeatedly told I would go to hell, or I was narrowly allowed in their church with the caveat : Love the sinner, hate the sin. So, I drank some more, tried to starve myself and continued down other self-destructive paths. If I was going to hell, I might as well do it on my own terms.

    When I came out of that ” hell” I had created for myself, I decided to check out spirituality and philosophy. I finally did find some comfort in Tibetan Buddhism, The Tao, and a tapestry of beliefs systems. And gradually I came to see that I had become not only anti-Catholic, but also anti-Christian.

    I was a hypocrite. My heart and mind were hardened so I would not feel “judged” by others. And the outcome (no pun intended) of my defensive subconscious strategy was that I judged the “actions” of people who were Catholic or Christian. I even made jokes about them. I didn’t dislike or make fun of people who I knew were not homophobic, nor those who actually supported LGBT people. But my “acceptance door” for other Christians was very narrow. I even had bumper stickers that said, ” I have friends who are straight, but not narrow.” Hmmm, I was being “gay and narrow,” well, at least when religion was involved.

    I am humbled and embarrassed to admit this: I made fun of fundamentalists and evangelists — people whom I didn’t know anything about other than their perceived Christianity. And I also felt some sort of “twisted self-righteous indignation” when some of those wealthy televangelists were publicly brought down because of sinful illegalities from cheating on taxes, to having hetero or homosexual affairs. “See what you get! You preach hate, and it will return to you in myriad ways. Even worse, you now have threatened the faith of your minions.” Aarghh… I really did think that way. Thank God I never became an atheist.

    OMG! I just had an epiphany! I have never told anyone about this — not in person, by phone, text, email, letter or mega phone. Seriously! Thank you for this gift — for your gift of understanding… I never even considered “confessing ” this to anyone, so I must feel wholly safe and loved by you. So now, I have just admitted what I kept buried inside because I was ashamed of my thoughts. How ironic — the guilt came full circle. (I don’t feel or think that way about people/other religions. I might not like what they do, but this whole “dying thing” is really helping me find clarity.)

    The Davis Community Church is now my spiritual home — well, my spiritual home is inside of me, but I let it out to play with Mazie in the DCC Sanctuary. The DCC community and family are now mine, but I will gladly share. I embrace the differences and the similarities, and I feel embraced too. What a difference a gay makes.

    Having a fatal neurodegenerative disease, one that has already taken too many lives in my family, has actually been a gift to me. It feels like I’m getting a ride on a “spiritual time machine.” But this time machine isn’t in real time, because there is no one thing that is “time.” Come take a ride with me on the spiritual time machine — it’s free, you can wear comfortable clothes, and it doesn’t take long at all. We can have coffee, or just look at coffee while we talk about love, laughter and living mindfully?

    The experience I had with you, and the forthcoming letter were totally unexpected gifts from the ALS Walk. Anyway, I was so happy that both you and your brother shared the day with me, my family, and friends, ranging from childhood to the new soulmates I’m making at ALS support groups. I am thrilled, grateful, and comforted to be supported by my church friends and family, along-side some Davis “old-timers.” At the Walk we made new friends, and saw even more people who are friends yet to be.

    We just never know — everywhere we go, we can make new friends, but before I um, I…. I just distracted myself by counting how any times I’ve used the word “friend” so far.

    Geez, you might think I live in Mr. Rogers’ neighborhood. No way, no sirree Bob, he was far too goody-goody for me. I wanted to climb trees, scrape my knees, play dodge ball with a vengeance, and make my Ken dolls fight each other for the right to kiss Barbie. And after the kiss, Ken got on top of Barbie, and with Ken in my left hand, and Barbie in my right, they rubbed up against each other and made these weird sounds, “umm Mmaaa clikcumm muhh duhh haummum click ooo aa click uhh uhhhmmm.”

    I don’t know if Ken got kicked out of school during kindergarten, or if he was raised by the people in the movie, “The Gods Must Be Crazy.” Barbie rarely said anything, except once in awhile she’d chime in when the Kens were fighting — “Oh, no! Stop it you brute, leave him alone! He’s the one I love…” She had this annoying high voice that sounded like she was running out of breath — it made me want to drown her. In fact, I did drown her several times in the Doughboy pool, but one of the Ken’s would always rescue her using… what else? Mouth to mouth resuscitation.

    Wow! See what happens when I get obsessive about making friends!? I end up drowning Barbie, only to have Ken 1 or Ken 2 revive her by smashing his hard plastic face onto Barbie’s hard plastic face.
    Well, my dear friend(s) I can’t think of a better time to say “See you soon, I hope. Keep smiling.”

    Me and my goofy family (ones that are still alive): Cathy, older sisters Peggy and Barb, and Dad, Gene Speck. This photo was taken at least a year before I was diagnosed and five years before my dad turned 90.


    Note: October 6 just happened to be my brother Larry’s birthday. He died of ALS June 22, 2008, not long after his diagnosis May 6, 2008. It’s never too late to donate. Our chapter did not reach our goal, which could cut patient services. For more information about ALS and the services provided by the ALS Sacramento Area chapter check out these links : www.alssac.org ( Be sure to mention my name–you might win a prize! )




    • Cathy, I love your story today, I love your humor as well as your vision to share your life with me and others who have met you along the way. You show what it is like to LIVE as all of us are dying in our own way. You just know what you will die from. You inspire me every day. So glad to have met you in person.

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