Jump for ALD TDI

Hiya lovely Blong Peeps ! It’s that time of year again. Really , again ? Yup ! This is our 7th Annual ALS Skydiving event. Our first was at the end of April in 2010 when Mazie had just joined our family. She weighed only nine pounds and was super mellow. She had been traumatized before we rescued her.
Ennyhoo, here’s the deal-leo:

Look ! Up in the Sky ! Way up in the Sky ! It looks like just a speck, but…it’s actually the SPECKtacular Skydiving for ALS Challenge Saturday May 14, 2016, 10 am to 2 pm at Skydance Skydiving – the best Skydiving experience in California !

“You can jump out of a plane or make a donation to ALS TDI ! You choose ! Challenge your friends- the more people who jump, the cheaper it is ! ( Look for a “Groupon” too ! )
And yes, you can skydive AND make a donation.

It’s fabulously fun and free to watch. Some beverages and snacks will be available, but you can bring your own ice chest and beach chairs to get up close to the landing area. Come celebrate Life with us ! Cathy Speck jumped – so can you !

Call or email Skydance ASAP to reserve your spot in the plane: 530-753- 2651
Website is: http://tandemskydivingschool.com/?page_id=15

SkyDance SkyDiving is at the Yolo County Airport 24390 Aviation Ave Davis, Ca 95616

Look for an update about our awesome “SPECKtacular Skydiving for ALS ” T- shirts !

Text Cathy Speck at 310-508-7401 or email speckduval@gmail.com

You don’t have to attend to make a donation, but we’d love to hang out with you ! DONATE today or for more info about ALS TDI go to:

What and who is ALS TDI ? Well, take a peek at this : www.als.net

Stephen Heywood was diagnosed with ALS at age 29. After finding no treatment options, his brother, James Allen Heywood, realized that a gap existed in the preclinical development of therapeutics for ALS. In 1999, he founded the ALS Therapy Development Institute in the basement of his family’s Newton, MA home to bring effective treatments to people living with ALS as quickly as possible. Although Stephen is no longer with us, this same sense of hope and family drives every decision made at the Institute today.

Our Mission
The ALS Therapy Development Institute and its scientists actively discover and develop treatments for ALS. We are the world’s first and largest nonprofit biotech focused 100 percent on ALS research. Led by people living with ALS and their families, we understand the urgent need to slow and stop this disease.

One of ALS TDI’s slogans is this: “ALS is not an incurable disease , it is and underfunded one.” I tend to agree with that. It makes good sense, and it gives me hope for the next generation.






For those of you who don’t know of “The Magic Monkey Princess”

Mazie is magic. No, really, she is. Wherever she goes, people smile when they see her. Do you have any idea how thrilling and fulfilling it feels to know that no matter where I go with her, she will brighten up someone’s day ? Instant gratification- just add a dose of Mazie.

I love going anywhere with her – to cafés, funerals, schools, church, hospitals, my oncologist appointments, my ALS FUNdraisers. And she mystifies the crowds at the high school girls’ basketball games as she sleeps through entire games packed full of loud and proud parents and the blaring Pep Band. The buzzer at the end of the fourth quarter is like her morning alarm clock and she pops up and looks around with her sleepy face. Oh, and her face, sleepy or not, well, um, let’s say she looks like, um, well, y’ know the Wizard of Oz ? Well Mazie looks like she’s half Toto and half one of those Flying Monkeys.

When people ask what kind of dog she is, I chuckle to myself because she’s not really a dog, and she knows that, too. But she is patient. And magic. No, really, she is.
Mazie is a six-year old, fifteen-pound, grayish pug/poodle/terrier/monkey princess with a crooked, aggressive-looking underbite that literally makes people gasp out loud. It’s not a bad gasp, like they’re horrified or anything like that, it’s just that….Hmm, you really need to see for yourself.

Not only does her face attract stares, so does her vehicle. Her Highness rides perched upon my walker for all the world to see and so that she can see more of the world. She’d get bored looking at shins all day, so she gets a ride with a view. Of course my walker also attracts stares and smiles everywhere we go.

When I was diagnosed with ALS in 2009, I decorated my walker with brightly colored bling, noisemakers, stuffed animals that sing and laugh and quack and….you get the idea. I wanted to break down barriers for those folks who might feel uncomfortable seeing and talking to me knowing that I have a cruel, fatal, ugly disease. And Mazie charmingly enhances the “welcome mat on wheels” I created. Everyone wants to talk to or about Mazie. Mazie is magic. No, really, she is.

In 2014, I was also diagnosed with metastatic neuroendocrine cancer, another cruel, fatal, ugly disease. She visited me in the hospital during my week stay after the surgery and cheered up my visitors and she gave all the staff a break from the seriousness, too. The cancer gives Mazie even more opportunities to help people smile – all the folks working and enduring chemotherapy at the Sutter Davis Infusion Center. Chemo won’t help my cancer, but I do get monthly injections and if I show up without Mazie, well, “Where’s Mazie ?” reverberates in the check in area. Geez !

Before I got the ALS and cancer, I was a 100% social animal. I worked with the public, performed for the public and I loved to have parties and bring different types of people together. Many people with these diseases slip into isolation for understandable reasons, but I knew that isolating would kill me. ( Yeah, yeah, I do use humor in addition to Mazie to keep smiling and laughing.)

Mazie’s cuteness cuts through discomfort, whatever kind it is. When people come to visit me, Mazie gets genuinely excited and jumps up and down and up again onto the futon where everyone loves to sit. Her exhuberance instantly sets the tone of the visit as happiness and gratitude settle into our hearts.

Mazie is magic. So what’s the trick ? A magician never tells, right ? Well, I don’t think Mazie knows she’s magic. And she has no idea how many lives she makes happier, how many tears she helps dry, and how many people feel loved when she greets them. That’s part of her magic. It’s pure. She asks for nothing in return. But I do believe she knows how happy she makes me. And that I get happy everytime we go someplace where I know people will smile and laugh and come talk to me and Mazie.

I love my life. I have everything I need. I’ve done everything I want to do. I am at peace with the cycle of living and dying. And I am comforted knowing that after I die, Mazie will still help people smile and laugh.
Mazie is magic. She really is.






I (was) in LB!

Howdy precious Blong Peeps,
I promised I’d tell you about my road trip to Long Beach, so here we go:

On Saturday March 5th Linda drove me to Kettleman City which takes about four hours and is kinda halfway between Davis and Long Beach. That’s where we do the “Cathy Speck hand-off” and unpack all my suitcases, oxygen equipment, the bedding to make myself comfortable and all the liquids I need to keep myself hydrated and nutrient-enriched. Then we pack all of it into Blanchie’s car and her wife Luukie drives us down south to Long Beach. It’s a shorter distance there than to Davis, but it can take longer due to LA traffic.

Blanchie Simon, aka Angela Simon PhD, is the best BFF this grrrl could ever ask for. We met in Davis, Ca in 1986 when she was working on her PhD in Social Psychology at UC Davis. We have been connected at the heart and soul level ever since then. And we went through all of it – all sorts of devastation and jubilation and everything in between. We continue to ” be there for each other” and I’m so sorry that I have to die and leave her behind to deal with the sorrow. I can’t fix that.

Blanchie and Luukia live in a great neighborhood in LB and have three friendly dogs and cats and fabulous newly renovated backyard. Hmm, I’m kinda telling this story backward. I mean, the following story is about our drive back North on March 14th, at the end of my love-filled visit. Oh well. Hang on, it’s a wild ride :

Okay, these phonetos tell a story or two. First we have my BFF Blanchie in our Kettleman City motel room making our new ” gangsta sign” – it’s the letter “d” pointed up. It means “dyke up,” like the idiom “man up.” Why were we talking like, that you ask ? Well, I’ll tell you- it’s a fun BFF story.

We were driving north on “The 5” as they say in SoCal speak. There are very long stretches of nothing but mashed insects on your windshield, and we talked about those insects we killed by driving so fast ( 80 mph in Luukia’s 8 cylinder Tacoma pickup.)
I told Blanchie the story about what a sensitive little girl I was and how I would cry after our family road trips when I saw the dead butterflies in the yellow Ford station wagon’s front grill.

Of course Blanchie laughed at me, and mocked my naive emotionality. Said she in a deep, authoritative voice, “Oh what a cry baby, c’mon Cath, woman up !” And I said, ” that’s right, I was such a cry baby back then, now I need to just dyke up.” We both started saying “dyke up !” over and over again and thought we were totally hilarious. That’s what BFFs do, of course.

After we checked into the motel we decided that we were gonna make “dyke up” be A THING. It’ll go viral, and we started it. You read it here first. And since Blanchie so wants to be in a gang, she came up with the “d -up” gangsta sign, Brilliant Blanchie !

Okay, whew ! Next story: we only stopped once between Long Beach and Kettleman City and that was to get gas and go pee. ( Say it like it is, Cath.) As soon as we pulled into the gas station, I shrieked ” OMG ! An endangered species right there, I hafta take some phonetos ! It was a public telephone ! I know, right ?

The next story is sincere and serious: my friends since forever Janet Chaykin and Denise Curry came to see me when I was at Blanchie & Luukie’s place in LB. Our visit was purrrfect in every way. Blanchie borrowed a trike for me to ride and the four of us rode/walked a mile to a cafe to pick up a special-order pie for Luukie’s birthday. Blanchie gave me a really hard push and I went flying downhill for a block and a half then took a left onto another downhill street. It was so friggin’ fun. I was flying ! And nothing bad happened !

We went down at least two alleys which were nothing like the picturesque alleys of central Davis. But there were three plants worthy to be phoneto-ed, and here they are.
There you have it.
Those are my stories for now.
I hope you enjoyed the tour…







Catching up!!

Hey there Blong Peeps !
I meant to post this March 1st, several days before I left to visit my BFF Blanchie Simon in Long Beach, but oops, I didn’t it. Here it is in all its glorious belated-ness. I promise to Blong and post phonetos of my LB experience soon ! Really, I promise.

Yesterday when Linda came back inside with the mail, she was carrying a visually loud Monster Truck pile of letters, packets, packages, postcards and bills. I mean it was huge – the first phoneto shows just a small part of my mail.

The first envelope I opened was from Sutter Health with a bill for $10.33 from June 2015. What for ? Um, oxygen equipment and a Sutter Visiting Nurse from Hospice. Huh ?! Did I die but forget to leave ?

Oh, I see, since I was dead they just held onto my mail, including some great deals from Davis Ace that expired in August, several charitable organizations that would like more money from me, a birthday card ( November ) with $20 cash, Christmas cards from family and a wonderful, touching homemade -with- love Christmas gift from a woman, Karen, whose beloved brother died from ALS.

This gift is the focus of my phonetos. Geez, Karen put all this loving energy into making this gift and she hand-wrote ( in cursive ) a truly heartfelt letter to me, but she never heard a peep from me. PEEP, PEEP, PEEP ! Karen, please hear my PEEP !

She explained in the letter that we’ve never officially met, but she has attended a couple of our SPECKtacular Skydiving FUNdraisers for ALS at Skydance on the Yolo County Airport.

She explained that she and her family are cattle ranchers in the Woodland area and that she made me a leather heart because: “you represent the unspoken-cowgirl-spirit of strength, courage , faith, love and laughter.”

Holy Sheeyat ! That is soooooo kind ! I am so humbled. She’s so nice ! Sheeyat ! Losing her brother to ALS was clearly so difficult for her – he sounds like he was a 100% great guy and a loving brother.

So. Here we are. This is what happens in life and in death ( gosh darn post office mix-up.)
I will contact Karen personally and I’d like to sit down to thank her, talk with her and to listen with her. Of course I’ll also invite her to the ALS Skydiving event May 14th. ( All y’all are invited to that and tell your friends.)

This is another reminder about being grateful and acknowledging gifts of all kinds. And, for me, when I actually do die, I’ll make sure to leave instructions telling the post office what to do.

Thank you Karen for the Leather Heart Gift ! And thank you Elizabeth Davidson for the $ 20 birthday gift, and to all of you who sent holiday cards, “Seasons’ Greetings !” It’s always some season ! Thank you, thank you, all of you.

( Oh yeah, the even weirder thing is, since June 2015, we still received most of our usual mail, you know, lots ‘n lots of medical bills, PG&E, ALS stuff, but this other pile of mail was “found in unused equipment.” Harrumph ! )

March 16th
Trish Timothy, my dear friend since high school, is my connection to Karen Stone and she coordinated a lunch date for the three of us next week. How absolutely wonderful ! I’ll tell you all about it later…

Feb 15, 2016
Photos ( not my phonetos ) of John Philip Newell and other lovely, loving friends.







Preface: I don’t have a “ghost writer” named Laura. This is all me. Laura is Laura K Marsh, PhD, my ” Blong Master,” which means she posts my stuff. Without her, there’d be no Blong.

If you’re new, or have forgotten, I call it my Blong because I used to be a performing singer/songwriter and now I’m a blogger: blog + song = Blong. That’s ” old math.”
Ennyhoo, here ya’ go :

Season’s Greetings dear Blong peeps – it’s always some season, right ? It sure feels like Spring here Davis, CA.

I’m so sorry I’ve been inattentive and I have no good. excuse. Hmm,maybe it’s like when you have one of those friends you don’t see for five or six years , but when you get together the friendship is as strong as ever. Maybe ?
I hope it feels that way for you.

Today was a Love Fest ! Yes, yes, everyday is a Love Fest when we let it happen, but every cell in my body feels energized with Love.

So many reasons, so very many myriad reasons to feel loving and loved. Let’s, see, let me count the ways: one, two, three, fifty-six, ninety -three. I’m getting tired of counting.

John Philip Newell’s sermon at the Davis Community Church this morning fueled my fire, my “hunk a hunk a burnin’ love.” But really, my soul friend Jennifer Terra picked me up for church and gave me a helium Valentine’s Balloon, and I think you all know how much I love helium…..

Ennyhoo, after church we went to a brand new restaurant on D st in downtown Davis called Winds of Change, and it was FABulous. I actually ATE my food !
Oh yeah , some other super special folks made church this morning even more SPECKtacular :
Mary Lynn Tobin, Stephen Brewer, Chris Neufeld-Erdman, Bill Habicht, John Evans, Deborah Jory, Bob & Karen Johnson, Leo Sacramento, Elisa Stone, JoAnn Diehl, Audrey Lippmann, Bob Shulz, Molly and Sandy Carey….oh geez, way too many, can’t count anymore.

Love love love ! Mazie and I went on a lovely Spring photo-triking adventure after lunch. She brought home some beautiful flowers for Linda…

Feb 13, 2016

Jennifer Terra took the photo of me holding hands with her Mom, Carroll Terra at a presentation/spiritual experience led by an enlightened, true man of God’s love , John Philip Newell at the DCC Saturday morning. I was so moved, so deeply transformed after listening to his every word, every breath he took between words….Uh, um, I can’t put my feeling into words right now.

However, last evening, when I took Mazie out for a photo-triking adventure, God/Mother Nature presented these sights /experiences to me. I don’t need words to explain the beauty and truth of these gifts that are always there, just waiting for us to open our hearts and eyes…

( I suggest you “google” John Philip Newell, a Celtic Mystic, if you wanna get an idea why I’m so “on fire” with Love. )







All are welcome to a free special screening of the ALS documentary ”Better Days” on Sunday, Dec 6th from 1:15 to 3:30pm at DCC Fellowship Hall, 421 D Street in Davis. The event, officially called “Better Days- A Special Community Screening in Honor of Cathy Speck ,” is free and appropriate for all ages, although issues about dying can be intense.

“Better Days,” was produced, written and directed by an independent filmmaker originally from Lebanon, Nadine El Khoury. She says that “The documentary puts you inside the lives of four remarkable individuals who refuse to surrender to Lou Gehrig’s disease. I had never heard of ALS until my dear friend was diagnosed with it. Watching him deteriorate from ALS was worse than living in war torn Lebanon for fourteen years.”

“Better Days” is ithe closest look yet taken at the whole ALS community, from science to faith. Families, caregivers, celebrities and healers help form a perspective that collapses five years of slow degeneration into moments of human spirit. This is a documentary that will make you love four strangers and want to help find a cure for ALS , as well as help maintain quality of life for PALS ( Person with ALS ) and CALS
( Caregiver for ALS .)

In the Spring of 2014 , after El Khoury was finished with the film footage, she needed to find music to accent the emotions of the documentary, so she started searching on You Tube. This is where Cathy Speck enters the story. El Khoury heard Speck singing the Duval Speck song “Sweet Beyond” with lyrics written by Speck about what she imagined her Mom would’ve said to comfort her after she died . Speck had just turned 13 when her mom died of ALS the heartbreaking age of 52. Other Duval Speck songs are also featured in the documentary.

It’s a remarkable story that El Khoury had no knowledge of Speck or her family’s history. When the two met in person in Long Beach in June of 2014, they quickly became dear friends and Speck felt completely compelled to raise money and help El Khoury finish her project and to make her dream come true.

El Khoury explains, “After I met Cathy I felt a new momentum to finish the documentary – she brought beautiful energy and support from her community. The last leg of the journey happened because of Cathy and if she hadn’t given me all that support it would’ve taken much longer to finish. It took me seven years to complete “Better Days” and I am so excited to share it with the Davis community.”

ALS a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. The progressive degeneration of the motor neurons in ALS eventually leads to their death. The usual prognosis is between two and five years upon diagnosis, though more recently people are living to 10 years or longer.
Currently there is no treatment or cure for ALS.
Ninety percent of ALS cases are sporadic, meaning it can happen to anyone, anywhere, however, 2% of ALS cases are caused by a SOD1 genetic mutation, in the Speck family’s case, the genetic mutation came from the maternal lineage. Other members of the immediate Speck family have died from ALS : brothers Larry 2008 and Paul 2011, “and I ain’t dead yet, ” confirms Speck. All of Dorothy Speck’s children have/ had a 50/50 chance of inheriting the genetic mutation that leads to ALS.

To kick off the event Duval Speck ( Linda Duval and Cathy Speck ) will lead the audience in two sing-along songs “to help people feel more connected with each other. This is horrific disease, but together we can turn it into a beautiful love story. We are one.” says Speck.

After Pa

Part one of two:
Tough day today. I think it lasted two or three days. If you read my previous post about procrastinating and blah, blah, blah ….Well, I finally got my butt out of my too comfy recliner, cuz I knew staying there was not good for me in any possible way. So, I say to myself silently, “What helps me smile and chuckle faster than I can typo “purrrfect?” Phototriking with Mazie the dog monkey princess, of course ! I knew I needed to ride somewhere that requires more physical force than our leisurely alley rides- I had to get some serious Sheeeyat out of my body. And no I don’t mean that literally- this time.

I loaded up my trike with everything The Monk and I need: soccer ball, oxygen tank, water bowl and poopy bags for monkey and coconut water for me, bike light and flashing reflectors, ALS WALK promo material, tent, fire wood, lanterns. ( Oops. I got mixed up with my camping list from the last time I was able to camp – two years ago- three ? Oh no ! Feeling sorry for myself ? Me ! Nah…) The last thing I did was strap on my Sony Walkman and listen to a mixed CD my dear friend Julie Bowin made for me ( before she died obviously.) And yes, I’m safe and only use one earphone. This time the lyrics of each song sang directly to my grief, my raw, unbridled grief. And that was okay. I feel so free to feel my feelings outdoors -my free range feelings. As the sun went down and the sky turned darker , so did my mood. Oh yeah, I forgot to sAY that when my emotions were too big to be silent and I wanted to give them words, I stopped to free range type on my PHONE. feelings See Part Two of Two.

Part two of two
Triking in the dark with Mazie. I am crying as I listen to Jackson Brown, John Lennon, Bonnie Raitt, that big song from the movie “Once.” My dad died Monday Sept 7th an hour after I left his bedside where I’d been for eight days.

I feel so, so sad. Deeply to my core sad. I haven’t felt this sorrowful emptiness since Mom died. Why now? big hole. big hole that opened up wide for all losses . All losses too visual . Too loud . Too hurt. These are My losses that for today. I will not let them be philosophically and spiritually wiped away. My real, wounds untended. Not edited. Not glossed. Not spiked with humor here & there. I am 13. I am 55. I am alone. I am embraced. I am with. I am without. I know why I am here. I am here to help. This knowledge does not numb the intense nothingness. Deep. Difficult introspection is that. Deep. Difficult. I can cry. I cry. My body heaves like it did more than 40 years ago. But now I am not 13. Am I lost. No. I only feel like I’m lost . I know what to do. When to. How to. My own death. My own dying is not sad. For me. For you it is. I am so sorry that you will feel loss. I hope not lost. You are here. So am I .

What does lost mean. What does loss mean. And now. Here I am. Back in my head. I am not in my core, my torso. I am in my head. I’m not crying now. Damn it..
The sun goes down. The moon comes up.







I’m sinking. I’ll sink into the pink. It’ll be okay there. I’ll be okay there. Here. But where do I sink ? Sink fully. I can sink now. I Will sing. I will sing later. Now I’m just sinking. Damn it ! Damn it. Feel it. Fully. It’s okay. I’m okay. The pink is not dark.

It’s been a long time since I wrote something for da Blong, yup, too long. Oh, yeah, I want to clarify: someone asked me if I have a ” ghost writer” because it says ” Written by Laura.” No, I do all my own writing; my dear friend Laura Marsh posts it for me cuz I’m techno – disabled. Alrighty then, enough about you, let’s talk about me. It’s always about me.

In November of 2014 I did a TEDxUCDAVIS at the Varsity theater in delightful downtown Davis, Ca . The theme for that event was “Roots of Inspiration,” a perfect set up for me since I’m a Davis native, and I’m told that I’m very inspiring.

“What do I do now?” was the title of my talk, but I don’t know if anyone in the audience understood the connection, or if they even noticed the title. I’m not at all criticizing the audience, they laughed and cried at the appropriate times. Well, I bet that some folks who don’t know might have been “speechless” when I rolled my fabulously blinged-out walker up to the microphone . I was wearing a bright blue cape with bright red letters – all in caps – that spelled “STOP ALS. ” I was also wearing a tie with my stiff, white button up shirt.

The stage didn’t have a ramp so four of my friends helped me and my walker onto the stage. Just that show of support was enough to get the audience intrigued – who IS this person and what is WRONG with her ?

Before I launch into my story, you should know that all TED TALKS are limited to 18 minutes, and that TED stands technology, development and innovation, I think. Or maybe it’s Technologically, Especially, Dumb.

While I was preparing for this talk that could possibly change my life forever, I , well, I never prepare for my talks, I just open my mouth and let Chatty Cathy take it from there. And then there’s that oft -heard phrase “change my life forever,” well, everything changes our lives forever – that’s what life is, change. We are always changing, and nothing is permanent, never, ever.
Since this was kind of a big deal, I did prepare, I wrote and rewrote for hours, days, and then I changed my perspective. What did I want the audience to remember forever. Ha ! When I woke up Saturday morning, the day of the TEDxUCDAVIS, I pretty much threw my preparation out the window and into the recycling bin. ( Can’t say threw it in the trash in Davis.) Like Sinatra crooned, ” I did it my way.”

I had a blast bantering with the audience before I got to ” the meat” of my talk ( yes, I’m a vegetarian. ) But the I noticed that the stage manager was holding up two fingers which meant I had only two minutes left on the stage.
Gosh darn it ! I didn’t have to think on my feet since I was sitting down. During the last two minutes, I quickly prefaced my lyrics and then I sang one verse and one chorus from my “loss and healing song,” Sweet Beyond. Before ALS I was a performing singer songwriter and emcee. This song was on our first ” Duval Speck ” CD which you can hear at
www.duvalspeck.com. When I watched the YouTube video of my talk I cringed when I heard my self try to sing. Ego be gone ! Away ego, step away. You only bring me pain.

Ennyhoo, I had so much fun while I was talking that I completely forgot to say that now I have cancer too: Metastatic Neuroendocrine Carcinoma. I even have a great scar on my torso that I could’ve flashed to the people , but no, I never even thought about the cancer.
If you want to have fun vicariously, check out my TEDx talk URL : http://youtu.be/5eniiq5ep_s?t=1h11m40s

And if you’d like to hear all the stories I didn’t have time to tell at my TEDxUCDAVIS talk, I invite you to attend “Better Days with Cathy Speck: An ALS Documentary Benefit,” featuring Cathy Speck, with an extended version of her inspirational, standing ovation 2014 TEDxUCDavis talk, and Nadine El Khoury, director, producer and writer of “Better Days: the ALS Documentary.”
The benefit takes place on Saturday, Jan. 31, 4-6:15 p.m. at the Davis Community church Fellowship Hall, 421 D Street (look for bright yellow smiley face helium balloons to enter the hall.) Doors open at 3:45 p.m. The suggested donation price for tickets are whatever amount the donor wishes to give, from $1 to $ 100 or more. Advance reservations are recommended, as seating is limited and tickets may not be available at the door. To reserve a seat or make a donation, go to http://www.gofundme.com/ddbn0k to donate, then click on “contact” near the bottom of the page to reserve seats. Thanks for reading my Blong, and if you come to the show on January 31st please come and introduce yourself to me. If you already know me, please come over for a hug !

You’re Not You

Welcome back to my Blong. I’m sorry I stayed away so long. I’m trying to “make up for it” by posting three entries in one evening. If you want to understand where this post came from, make sure you read the one before this. I’ll ask my ” post-er” Laura Marsh, to make these fall in line . One, two three. Just like the Holy Trinity, right ?

Mine was a happy, active, exciting childhood. I am the second youngest of nine children, I’m sure each of siblings have different perspectives . By the Time I came along I think my parents were much more lenient and relaxed. I jumped off the roof with a pillow case thinking it could be a parachute. Since that didn’t work, I tried an umbrella like Mary Poppins. That didn’t work either. But it was fun to think about Julie Andrews cuz I hD a crush on her even though I had no idea what that crush feeling was…

And then sometching happened, something devastating-life changing,..mom diagnosed when iw as 11, she died just after I turned 13 . I hadn’t gone through my angry teenage years, so is til wanted to be at moms side. I want my arm to touch her arm.

But isn’t everything changing always, nothing is permanent, so it’s all life – changing. By not trying to cling to things that used to be, we let go of suffering. Can I cling to my moms robe and cry” please don’t go, please. Don’t leave me- my hands can’t hang onto your robe.they’re slipping , I can’t hold onto….This is suffering. Let go, to grow yesterday’s attachment is gone …

Embrace death & dying to live more fully. No fear energy taking you away from this moment. The longer people stay away the worse they feel and less likely to ever come b/c guilt. It’s okay. I understand . But please learn from this. I am here for you to practice with/ on. It okay. Our PILLOW: Jennifer Terra and me with Huyen.
When I talk to classes, My hands and arms look like I’m conducting an orchestra ,,,,and in a way, Mybe I am. Yeah, maybe in am. Are you feeling conducted?

Cancer diagnosis who knows how long I’ve had it ? I know the date of my surgery and my scans, but who knows? Really it’s the same with ALS.? I do know I was born with the very rare genetic mutation butter who really knows when it turned the key… Yeah, the keys been in the ignition but when did it actually turn it on? It’s hard to tell because I’m so tuned into it- way more aware of my own body than any doctor .how about While I was watching the Lou Gehrig movie Pride of the Yankees on TV ? I couldn’t put the popcorn in my mouth? I kept hitting my chin? When I couldn’t open my bottle of carrot juice? When I started looking like a big flirt cuz I couldn’t button my top buttons?

Choose to adapt. My choice in the morning how I want to feel.
Facebook thank you ! Nadine hears music, we meet, do interview, I offered to help fundraiser market ,promote, DCC ice bucket to BETTER. Days? How perfect to have an ALS Documentary featuring music written and performed by someone with ALS?! My arms are open wide, and look what comes in? Be asked to talk at Emerson, sac city, Emerson, woodland .sierra, DCC , Korematsu. TEDx ?
Hillary swank has ALS in movie “you’re not you.”

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