I am HEEEREEE!!!

Cathy Speck
to me
0 minutes ago
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At last ! I am here , I am here, I am HEEEERE ! ( any Seuss fans recognize that slightly -altered reference? Don’t be afraid to speck out…I mean speak out- how egotistical of me. )
Here’s a copy of a highly secret, personal, private email I just sent to a dear family friend, whom I shall not name, but the band her daughter plays in is “Misner & Smith.” I realize that re-cycling an email to use as a Blong post isn’t very professional, but, hey, even I am gonna cut my self some slack on this one…
The photos looking out of my private room in Sutter General Hospital in Sacrapimento were taken by Linda Duval and Jennifer Terra.

Good morning from luxury suite 5403 – truly a room with a view ( see photos of Sutter’s Fort, skyline of downtown Sacramento, and sunset over the skyline on a rainy evening in July ! )

Oops! Well at 4:15 am in Sutter General Hospital after major surgery , I guess it’s understandable I might send the draft instead of the polished masterpiece I crafted especially for you , Peg. Let’s see, I already sent the photo of my eldest sister Barb tending to my parched lips, but I didn’t even finish my sentence : “Am I a candidate for a Playboy Centerfold or what ?” You get to answer the question – it wasn’t rhetorical-and I’m assuming you’d reply affirmatively, yes ?

What else…the surgery was successful and I pulled through breathing on my own, which was the ….um, the Big Question. Linda and I both agreed that living on a vent was not an acceptable option for me. The other super good news is that I can keep-on living with ALS without the horrendous abdominal pain, nausea and vomiting that had been plaguing me for over four years. I had simply brushed those symptoms aside as unavoidable side effects from ALS and the medications I’ve been taking. I never even told my primary physician about the misery I endured- why would I ?

The not -as -super news is that the neuroendocrine cancer cells spread and are lurking about in the mesentery and other nurturing places to lurk. They don’t respond to chemo or radiation other than a slight nod, tip of the cell hat, and a whispered, “Howdy do, ma’am.” It’s a fine trade-off, and the metastasized cells don’t scare me. I’ll show them how to have a good time, or else ! Or else….they’ll have yo sit in the corner and mope. Or maybe sit under the coroner and …mope. Even if chemo and radiation were an option, I would’ve “poo poo-ed” them. (Speaking of poo poo, that’s something I must do ( doo ) before I can check out of my luxury condo across the “Old Sackamenna.”

Also, I listen to my M & S CD over and over again- please let them know that their music brings me great pleasure. I’ve been spreading the news about their music to friends and even to folks I don’t know very well. After their last concert in Davis, I roamed the streets of downtown Davis with my blinged -out walker and the Amazing Mazie pug/poodle/ terrier / monkey Princess perched upon her four-wheeled throne and we sang the song of local musicians gone good. Gone excellent. Gone so darn awesome that proper grammar is trumped. Chatty Cathy indeed ! ( I might’ve even been telling my surgeon and anesthesiologist about Misner & Smith before my surgery commenced. )

Well, it’s 5:27-ish am now which I’m merely pointing out so you know how much time I spent crafting this email masterpiece especially for you ( and, shhh, my lovely BLONG Peeps ! )
Now that I’m nodding off, I shall tie this in a bow and sail it across the Sacramento River to you. Enjoy the moment.

Cheers & chuckles & buckets of love,
Miss Catherine

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Happy 4

Happy 4th of Juy to everyone, even if the date means nothing to you. Happy Friday to all and be super careful on freeways, highways and three-ways. Oops, no, not that. Or yes, maybe those should be safe too. Yup. What does July 4th mean to me? Well, thanks for asking- it means freedom, independence from whatever is ailing you. My grandma Mabelle Speck died on July 4th 1974 in a convalescent hospital in Davis, CA. Thank God. She had “bowel cancer” as they called it back then, but she already “beat breast cancer” in the 1930′s and 1960′s. She had just turned 81 when she last exhaled and was much too foggy from the morphine so it was kinda okay, it was good that she died then. Enough of that. The point is “have a NICE day” or else ….I’ll come make you smile. = D

Since I’m in SoCal I finally met and talked for hours with Nadine El Khoury, director of the ALS Documentary I’ve been writing about. I’m am so thrilled to tell all y’all that she chose two of our ( Duval Speck) songs to use in the documentary itself- not just in the trailer. Yes ! I’m so excited it feels like fireworks are shooting out of my head, heart, hands and ears, but it’s really too loud so…Oh what the heck Cathy Speck, live it up. That’s the key anyway, right? Live it up!

Enny hoo, I’m sharing a post from Nadine about the film “Better Days.” I hope you, or someone you know (or don’t know) can help fund the finishing touches… Hm “finishing touches” sounds like the title of some paperback romance novel. I won’t be writing any of those.
Here’s the real deal :

Countdown for “Better Days”
This is the last weekend to support this ALS documentary “Better Days” Please do what you can. We are close to finishing it with your help. Thank you to all who donated thus far. Your care and generosity makes a beautiful impact. We will be growing a fruit tree in a pub…”

News Flash update !

After our appointment with Dr Lee, my cancer surgeon, I had some final blood work. The results were not good on a few fronts (and backs, too, I suppose.) It appears that the neuroendocrine tumor in my small intestines has young cousins elsewhere in my body, and they are the kind you (well…Dr Lee ) can’t remove surgically. ) And since this bugaboo is so flippin’ weird and rare, chemo and radiation won’t be of any help either. “Oh bother,” says Pooh..

I’m gonna stick with removing the tumor, appendix and maybe my gall bladder and My Left Show- I mean Shoe, no um…My Left Foot. Whew ! My mind is playing cruel little jokes on me…Wait, who ARE you ? And why are you reading my private diary ? I locked it and hid it in my special garden ! Hm…!

Okay,back to the Blong. Let’s venture back a few days so you don’t feel lost or lonely and vulnerable. We can take care of that
The “Wednesday” I’m musing about in this post is from last week– the 18th of June.

Ready? Got yer seat belts on? Safety hats? Foolproof goggles strapped on ? Are you prepared to read sentences ending with prepositions on ? Ok! Let’s git ‘er done, and by ” ‘er ” I mean ” ergonomics” ie, typo-ing and reading sitting on an appropriately – fitted a chair, or at a standing-work cubicle while using good posture and deep breathing. It’s that simple. Let ‘re rip :

What a day ! Wednesday, that is. I think we’re on Thursday now,yes, it’s 1:02-ish am June 19th and the days daze are flying by while I’m flapping with only one wing. Shoot. No, don’t shoot! I’m not really a sitting duck, goose, egg, McMuffin, but I do feel kinda confused.
Here’s one thing I know for sure: the surgery is at 8:30 am on July 17th at Sutter General Hospital in Sacramento.

Tuesday 6/ 17, Linda, Mazie and I had the “big meeting” with my cancer surgeon to discuss the risks, the realities, possibilities, hopes and fears regarding removing the neuroendocrine tumor in my small intestine and maybe some in my teeny tiny intestine. And then there’s the “exploratory” part,which makes sense: major surgery is highly risky for ALS patients with respiratory weakness,especially for those of us who have lost too much weight –mostly muscle.

This a quality of life decision and I’m willing to shoot for the stars. No, please don’t shoot. I think all the gun controversies in the press are making me trigger happy to use the word “shoot.” (Chatty Cathy has done it again.) Enny hoo,the cancer has been so painful and unpredictable I wanted to shoot mys….oh no you don’t Miss Missy.

I am willing to risk the inability to breathe on my own. And that, my dear friends, would mean I’d leave Sutter General Hospital in Sacrapimento and go home to hospice.I have chosen to not live with an invasive vent or feeding tube.But let’s back up to the surgery: beep beep beep. Anesthesia and major incisions and taking stuff out and putting other junk back in will be traumatic on my body.But I do believe that emotionally,spiritually,mentally, sentimentally will be a culmination of myriad experiences and beauty will prevail. Now we don’t usually think it’s “beautiful” to also remove the gall bladder, appendix, and my left converse high top from 10th grade,

But, to use that same ol’ cliche’ in “the big picture,” this surgery is right for me at this time. Well, not at 1:21 am Thursday June 19th, but at 8:30 am July 17th. If there are “no complications I’ll spend about a week in that hospital -the one I said before, please don’t make me type it again.. And if there are no further complications, my recovery should take from 4 to 6 weeks.The details are all in the phrase “if there are no complications.” If I had a million dollars…oh wait, that’s another hypothetical…blah blaaaahhhh. Blah.

In the three photos I am lovingly intermingling with beings I love so dearly. These days -I truly mean this– these days, and these moments feel like I’m holding on to something ten years old….more later…
Stayed tuned for the next Blong post. Don’t touch that dial.. No, not “DIAL” soap . If you don’t “get” this reference, it’s okay; it’s simply toss-away nostalgia from the life-altering, high tech age somewhere between “the world is flat” ages and fueling cars with leftover french fries oil.

Yum, that smell is making me hungry for something I haven’t eaten in years–garlic french fries, onion rings, and wrestling with a woman from France. (That sentence structure is awkward, but I think it’s hilarious, and I’m the editor so it stays..) If you’re laughing yet, I’ll wait for you to read it slowly so can then join “The Laughing Game” which is a better story than “The Crying Game.”

This is Chatty Cathy signing off 10. 9. 8 7 w x y z ei ei. Oh. Uh oh !

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Memory Day

Greetings all, I sure hope you’re remembering to have a memorable Memorial Day! My sister Mary is on holiday so Linda, Mazie and I are up here in the mountains of Pollock Pines with Pop/Dad/Grandpa. Mazie loves her Grandpa and loves to leap high up onto his lap. He smiles his special Gene Speck smile while Mazie does a few circles around her perch before plopping down in the perfect place, for her, that is. But it doesn’t last long because she almost always has one eye part-way open, then zing -she’s off like a rocket ! Outside of the window she spots a mama deer and her two fawns looking for leftovers in the “backyard.”

After Linda patiently explained to Mazie, in one-syllable words, that it is not okay to scare the mama and her babies, Mazie and Linda went outside and approached the deer, who were oddly not spooked at all.. Mazie stood quietly curious, but Linda and the mama deer had quite the loquacious conversation. They even talked about religion and politics.

Meanwhile inside the house and enjoying the rhythm and coolness of the ceiling fan, Dad was staying abreast of current issues by reading two newspapers and I was avoiding breasts and real news by playing around on Facebook. I’m not sure if I worded that properly, but since when am I concerned about being “proper?”

Okay, enough about me, : I decided today that Mazie should have her very own Facebook page and being up here was the ideal place to take oodles of Mazie photos some of which are attached. Yes, yes Linda and I have thousands of Mazie photos, but Mazie’s Facebook photos will demonstrate her perspective.

This afternoon we all (not the deer) drove down to Sly Park at Jenkinson Lake which is not far at all from Mary’s house. Yikes! the park and the beaches were overflowing with people- not a deer to be seen. At the park entrance we got a discount for having our handy blue handicapped decal hanging from the rear view mirror, which, by the way, is actually against the law. That is, the decals should not be displayed until the vehicle has stopped permanently, but not eternally- I hope. I’m not done yet…

Enny Hoo, Dad used his charm and the Gene Speck smile to keep us outta jail so we finally got down to the picnic area to party in the shade. Okay, no here is a true story-you can even ask Linda. At one of the spots we explored there was a lovely walk way handicapped walk way for disabled/handicapped folks which crossed a meadow and lead to vista point.As we got nearer a bunch of flying insects were swarming -not in a scary way, just very…different. They turned out to be migrating ladybugs and they were…everywhere, including my arms and hands (see photos.) Do any of you know the story of migrating ladybugs?I bet teacher Mary Pat knows !

Enny hoo, again, on the way back to the parking lot five little kids came running up to me asking if my toys are for sale–oh that silly walker o’mine. I said “yup, cash only, no returns, no exchanges $12 each or 2 for $24.” Not really, but the kid were so fun and curious and asked why I wore “that thing around your neck” ( my neck brace.) I told them it keeps my head from falling off and they squealed with delight.

We ended up having a delightful afternoon despite the crowd of humans and swarming ladybugs and a bunch of goose poop on one of the beaches. Dad skipped the goose poop adventure.He said he really enjoyed this outing and seeing all the tents and picnic parties because the only time he’s been close to the lake there weren’t many people around the lake. Maybe he’s been sneaking out in the PT Cruiser in Winter after 2:00 am to make sure he gets a prime parking spot. No quite sure about that.

And speaking of 2:00 am, it’s almost 1:45 am – Pop, and Mazie and Linda went to bed hours ago, and I’m sticking to my usual after- midnight creative jams–not jellies.I first started this late night writing patterns when I was twelve, when Mom was finally put in the hospital. I couldn’t stand her not being with us at home, so I wrote about how I felt and what I wanted to happen.
Wow, I almost made it all the way to the end without talking about something sad. Well, come to think of it, it’s not sad. Writing, expressing myself, was an important and healthy coping mechanism. So there. Smiles everyone !
Cheers and lotsa love,
Cathy

Skydiveflyer

Howdy strangers ! Well y’all aren’t the strange ones – I am. Not that there’s anything wrong with not being strange and that wasn’t a double negative think that’s right.

Enny hoo, Chatty Cathy is coming out oft the closet coming up for air ! Whew, I’ve been un-well for a month and it’s not even ALS related ! Poop ! Double poop ! Abdominal pain/nausea/vomiting. I’ve hardly written on FB email , text.and not at all my beloved Blong or IpinionSyndicate.com Bt, the last two days have been much better. Before now I had to lie on my right side which made typo-ing difficult,

But the pain is lessening and it looks like Chatty Cathy strikes again !
Well, you know, it’s just that I have so many words that I need and/or want to get out while I can. Think about it–me with no outlet to communicate perhaps my tongue will stop doing what it needs to do to make audible sounds.

I suppose I could make all those sounds now and believers might think I’m speaking in tongues.
But could I still be able to communicate with printed words–not if I can’t I use my hands and fingers.

Yes, technology is more than amazing and very determined folks can use some sort of eye-recognition miracle to s…
Ooooh noooo Chatty Cathy slyly slinked, slunked, slanked into the room and made off with my laptop while I was giving my dentures a bath. They know when it’s bath time and they hide in nooks and crannies-maybe grannies- and …No no no ! Chatty Cathy go home. Go away.

Friday evening May 2nd :
Breaking News ! The abdominal pain/nausea/vomiting are back. Aargghh just when I thought…blah blah. Last night I felt well enough to join Mary Lynn Tobin for some live music in delightfully busy downtown Davis. Biscuits & Hunny opened for MIisner & Smith and the Oddfellows Hall was packed !

I just love how our Davis community supports live music. We could have the best bands west of the Mississippi , but without the music lovers and generous supporters, the music would just dry up and be blown to Stockton by that punishing north wind. But that is not what’s happening with our Davis musicians, audiences or businesses. The bands and the audience were comprised of longtime Davisites, which thrilled me since I don’t get out much and don’t see all the wonderful people at the Davis Food Co op, or the lovely crowds we entertained when I could still perform.
I didn’t even feel too sad about not being on stage sharing the interactive energy loop from audience to performer and back again.
We sat in back which has a great view of who else was there. I made eye contact with folks I haven’t seen in years – that’s when the tears welled up.

People don’t know what to say and I totally understand that. I wish I could hug every person who feels “unsure” about what to say or do, and say to them: “I understand, it’s okay, I know you care and I care about you too. Thank you for sharing the Earth with me. Try to focus on love. Just love.”
Hm, that might be bit too wordy – Chatty Cathy wordy ? So I would just hug and say “it’s all about love. Love, love.”
Whew ! I didn’t know those sentences were gonna come through my fingertips. Yikes!
So my intention was to give y’all the most recent update of flying the friendly skies of Yolo County, so here ya go :

The 5th Annual West Coast SPECKtacular Skydiving for ALS You don’t have to jump out of a plane ! Help raise awareness about Amyotrophic Lateral Sclerosis (ALS), as well as funds for )

Saturday May 17th 10 am to 3:pm
Please join us for the BBQ $25 Suggested Donation – or picnic for free.
Skydance Skydiving
Yolo County Airport
24390 Aviation Ave Davis, CA 95616

For more information and to donate, please visit :

http://community.als.net/SPECKtacular

All proceeds go to (ALS TDI )

Look! Up in the Sky! It’s a Bird…It’s a Plane…It’s SPECKtacular !

On Saturday May 17th Cathy Speck will be congratulating skydivers as they safely land at The 5th Annual West Coast SPECKtacular Skydiving for ALS event on Saturday May 17th from 10 am to 3:00 pm. Speck was the first one out of the plane at the first Skydiving for ALS event in April 2010. And now Cathy Speck wants YOU to jump out of a plane and bring attention and money for ALS research, or not. Cheering for the skydivers and sharing the ALS support is helpful too. All proceeds go to research at ALS TDI (Amyotrophic lateral sclerosis Therapy Development Institute.)

Monday May 12th at 4 pm is the deadline to put down a $25 deposit to save your seat on the plane. Tell the folks at Skydance that you want to take your turn, after your training of course, by noon, if possible. Donations are welcome anytime on this site! Not everyone has to jump to join the cause to find a cure for ALS. For more details and to donate, please visit http://community.als.net/SPECKtacular
Skydance is located at the Yolo County Airport 15 minutes northwest of Davis, CA

On April 25 2010 Cathy Speck and her ALS Walk team, The SPECKtaculars hosted the first Skydiving for ALS Awareness event with no plans of doing it again — Speck seemed to be progressing rather quickly. But she surprised everyone, including herself, and with help from oxygenation and breathing augmentation and ever-flowing love and support from the community ,Speck and friends established the annual status for SPECKtacualr Skydivjng for ALS Awareness. Said Speck, “with help from The Davis Enterprise, The Davis Food Co-op, Emerson Junior High and Da Vinci students, the awareness factor bloomed into fertile soil perfect for growing funds. And, oh yeah, don’t worry, you’re not gonna get shoved out of the plane all by yourself. You go tandem with your own personal “jump master” strapped on your back for the flight –that’s how it feels, it feels like-flying. It’s almost a spiritual experience–a wonderful, unforgettable sensation. ”

Speck, whose efforts go to FALS -familial (or genetic ) ALS, explains how this spine-tingling event will raise funds for FALS: “We invite each jumper to find sponsors who want to support the ALS cause but don’t want to jump out of a plane, or who might live too far away to attend. we’ll be super grateful if you can get $500 from your community or your employer or how about that $20 bill that you found crumpled in your pocket .”
The format of the event is similar to other FUNdraisers from The Walk to Defeat ALS to The Ride to Defeat Leukemia where participants ask people to sponsor them. and the sponsors can be at the spirited event or not.
“When we’re not in the sky we’ll be on the picnic grounds celebrating the love and support we have for each other. There are picnic tables, sun umbrellas,rest rooms, a skydiving gift shop, and a great viewing area where can watch up close as our friends land. It is thrilling to be part of this generous, brave,thrilling experience,” Chatty Cathy explains, ” it is so amazing to watch our friends or anyone jump out of the plane and land safely. Then when you ask them how to describe it they can hardly find the words. You can also watch my skydive video on You tube: www.youtube.com/watch?v=2HPIIv1KnDg
“When people an ALS diagnosis, it’s like being shoved out of a plane without a parachute and they don’t know what’s going to happen to them,” said April Kamen of Davis. Kamen made her first sky dive in 2010 at Skydance in Davis to support Speck, her dear friend and Davis Food Co-op co-worker.
Speck nodded, ” That’s so tragic becuase it doesn’t need to happen that way, but the less people understand about ALS, the more fear steals their precious, limited energy. Ironically, because I know the disease so well, I had no fear,” she said of her 2010 skydive. “I’m very much at peace with dying and the skydive experience was peaceful and liberally sprinkled with bliss. Everybody can have this- bliss. It’s there, it’s here. Allow yourself to feel it.”

Amyotrophic lateral sclerosis (ALS), often referred to as “Lou Gehrig’s Disease,” is a fatal progressive, neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death–usually from respiratory failure. The most common form of ALS in the United States is “sporadic” ALS. Most people with ALS live 2-5 years upon diagnosis. About 10% of people with ALS survive at least 10 years. This variable rate of disease progression makes prognosis difficult to predict and therapies challenging to develop. It may affect anyone, anywhere, but it is not contagious so go ahead and give Cathy and Gloria big hugs -they don’t hurt.

“Familial” ALS (FALS) means the disease is inherited. Only about 5 to 10% of all ALS patients appear to have genetic or inherited form of ALS. In those families, there is a 50% chance each offspring will inherit the gene mutation that leads to the disease. ALS already took our mom, our aunt and our oldest brothers, Larry and Paul. And then there’s me – I ain’t dead yet,” Speck smiles despite the odds.
“In February 1971, my mom Dorothy, a mother of nine was diagnosed with ALS . She was only 50 years- old when the doctors finally identified the rare disease. One December 1972, less than one month after I had turned thirteen, mom died in the Davis, CA, our hometown. Our extended family, friends and many people in the community were devastated. As part of an on-going healing and letting- go process, Speck is an “open book” advocate for ALS. She writes and speaks about the”whole picture,” the effects of ALS that forever alter relationships with others and one’s self. She speaks freely (and for no cost at all ) at public events, in churches and classes from junior high schools to college classes. She shares her personal process of living and dying and thoughts of the “afterlife. Everyone is encouraged to read the following feature story and watch the YouTube video to makes this event even more meaningful and inspirational : saccityexpress.com/learning-to-love-life/ An Interview with Cathy Speck ALS &MEUSA Activist

For the first time three other ALS groups from nearby regions are partnering with The SPECKtaculars to create The 5th Annual West Coast SPECKtacular Skydiving for ALS. Last year Gloria Samaniego Hale (who has ALS and is confined to a wheelchair ) and her supporters raised over $30,000 and are aiming for $75,000 this year for ” Young Faces of ALS” YFALS . Her group, Team Hale Yeah! along with Team UCSF are raising funds for YFALS..YFALS campaign was created by a small group of people living with ALS who all share a disturbing characteristic; they all received their diagnosis before their 30th birthday.Read more about her story at: http://community.als.net/skydiveforYFALS, The Mishork Misfits group with is comprised of other families who have the SOD 1 mutation. This group was created to benefit the West Coast Skydive for YFALS taking place for the third consecutive year at Skydance Skydiving in Davis.They represent a family with an extensive history of familial ALS. This cruel disease has yet to skip a generation of the Mishork family. Many members of the Mishork family, both living and deceased, are currently or were previously carriers of the mutant SOD1 enzyme, a known correlated trait of familial ALS diagnoses.
These two groups are starting at 9 am; The SPECKtaculars skydivers start at 10 am.

While some of us are still “tiny distant specks ” in the sky, friends and family be on the picnic grounds celebrating the love and support we have for each other. There are picnic tables, sun umbrellas,rest rooms, a skydiving gift shop, and a great viewing area where can watch up close as our friends land. It is thrilling to be part of experience. Speck invites all “Join as at the BBQ with a $25 suggested donation, even if you don’t have money. You’re welcome to bring ice chests for your own picnic lunch, so that your donation goes directly to ALS TDI .
Speck also emphasizes that “disabled folks, like , well, me, and my friend Gloria can skydive too — your “jump master” just needs to know a few days ahead of time to determine how to adapt the equipment. Contact Skydance today: skydancedavis@gmail.com p
530) 753-2651 9 am to 5 pm

Direct questions about SPECKtacular donations, potluck items, Davis helpers/volunteers to Cathy Speck at: speckduval@gmail.com or
text : 310-508-7401

The attached photos are way, way down at the bottom, you might want to bring an oxygen tank and maybe a sandwich… and just in case, three gallons of potable water..

C

# 1 On Saturday May 17th Cathy Speck will be congratulating skydivers as they land at The 5th Annual West Coast SPECKtacular Skydiving for ALS. Speck jumped out of a plane at the first Skydiving “FUNdraiser” and ALS Awareness event in April 2010.

# 2 Cathy & Mazie Duval Speck scoot around like social butterflies at the 2013 “Die Laughing With Cathy Speck” ALS Benefit.

#3 Left Perry , center Cathy Speck with Sean Harrison,my jumpmaster, on my back, right, Maggie Williams

# 4 Cathy Speck free falling with jumpmaster Sean Harrison

# 5 Cathy speck and jumpmaster Sean Harrison get ready to”be one with the skies”

# 6 Cathy Speck and Gloria Samaniego Hale cheer for cyclists as they cross the finish line at the Ride to Defeat in the Napa Valley 2013

Cathy Speck wants YOU !

Join us at “The 5th Annual West Coast SPECKtacular Skydiving for ALS” event.

What are you doing in Yolo County on Saturday May 17th from 9 am to 5 pm? Do you wanna jump out of a plane — one that’s so high you can actually see the end of a rainbow? “No,” you say? Harrumph ! Would you try it if you were tandem jumping with a professional “jump master” strapped on your backside?

Now is the time to Skydive for a cause, a heart- wrenching cause called amyotrophic lateral sclerosis (ALS) also known as Lou Gehrig’s disease. As always, this event is for ALS awareness, and this year our Fundraiser is for the ALS Therapy Development Institute (ALS TDI) You can learn more about this excellent research organization at : www.als.net

This West Coast SPECKtacular Skydiving for ALS is gonna be HUGE this year. We’re partnering with two other regional ALS groups,who last year raised $30,000. Space is limited so you need to call and reserve your spot with a $25 deposit before other non-ALS folks fill up all the spots on the plane. All details about Skydance Skydving (about ten minutes northwest of Davis) are on their Facebook page and on their website: http://tandemskydivingschool.com/ CA. 24390 Aviation Ave, Davis, California 95616 (530) 753-2651 9 am to 5 pm

How does skydiving raise money for ALS ? We’d like each jumper to to be sponsored by others: folks who don’t want to jump out of a plane, or live too far away but still want to support the ALS cause. I’ll be so grateful if you can get $500 from your community, or $10,000 from your employer, or $25 from your pockets we’ll be so grateful.

Basically it’s like any other “Run for Colon Cancer, Ride to Defeat Leukemia” where participants ask people to sponsor them, and the supporter can watch at the event in person or “in spirit.” Later on you can show your supporters the video of your jump if you choose to have the videographer tape your experience.

All of the donations go directly to ALS TDI . More details about the actual jump are available on the Facebook page of Skydance Skydiving . If you don’t sign up soon you might lose your chance. I will also talk to anyone on the phone or in person about how amazingly surreal ,beautiful, spiritual and thrilling skydiving is. I would do it again this year but I’m having problems with vertigo, and…y’know.
What is ALS ?

Amyotrophic lateral sclerosis (ALS), often referred to as “Lou Gehrig’s Disease,” is a fatal progressive, neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death–usually from respiritory failure. The most common form of ALS in the United States is “sporadic” ALS. It may affect anyone, anywhere. “Familial” ALS (FALS) means the disease is inherited. Only about 5 to 10% of all ALS patients appear to have genetic or inherited form of ALS. In those families, there is a 50% chance each offspring will inherit the gene mutation and may develop the disease.

In February 1971, my mom Dorothy, a mother of nine was diagnosed with ALS . She was only 50 years- old when the doctors finally identified the rare disease. One December 1972, less than one month after I had turned thirteen, mom died in the Davis, CA, our hometown. Our extended family, friends and many people in the community were devastated. Cathy’s Dad, Gene, lost the love of his life, the mother of their children, but at least she lived long enough to meet at least one grandchild, Becky.

I don’t want anyone else to lose their life to ALS. And even closer to my heart, I don’t want anyone else in my family to live and die with ALS. Some of us with her lineage can contain a rare genetic mutation. Like other families with the SOD1 genetic mutation, siblings , grand children nieces and nephews have a 50 per cent chance of inheriting the mutation that leads to ALS if their parent has/had it.. That mutation already got our mom, my grandma and her sister and my two oldest brothers.
In 2008 when I was helping as one of the a caregivers our brother in 2008 I noticed that I had similar symptoms to his and my mom’s: I had unusual fatigue, my legs felt like they were made out of solid oak at a time when I was in great shape and had plenty of endurance. I didn’t like going to bed, because cruel spasms taunted my feet and legs almost every night so I wrestled with myself and lost. I felt like I couldn’t breathe and that led to tormenting nightmares, and periods of horrific suffocation. When I got up in the morning my body was wracked as if I had run a marathon on our expensive mattress. During the day my head was too heavy for my neck muscles, and for the first time in my life,….blah blah blah. In 2009. after so many tests ruled out anything else, I had my DNA tested and sure enough I had the dreaded genetic mutation. Enough about me- for now.
If you are anywhere near this area, on Saturday May 17th, please come join the party–even if you don’t have any money to donate. Come learn about ALS–we are all in this together. Let’s do it potluck style– you can bring your ice chests with water, beer, wine, juice, coconut water and other picnic lunch/snacks to share with our wonderful community.

When we’re not in the sky we’ll be on the picnic grounds celebrating the love and support we have for each other. There are picnic tables, sun umbrellas,rest rooms, a skydiving gift shop, and a great viewing area where can watch up close as our friends land. It is thrilling to be part of this generous, brave,thrilling experience.

.It is so amazing to watch our peeps jump out of the plane and land safely. Then when you ask them how to describe it they can hardly find the words. (You can also watch my skydive video on You tube: www.youtube.com/watch?v=2HPIIv1KnDg
I jumped at our first event on April 2010. My experience was so amazing — it seemed spiritual in a way. I could easily get addicted to skydiving, because I have “an addict-like personality.” But I never want to lessen my experience in any way at all, so I’ll be sharing the joy and healthy, positive energy with my walker or scooter on the ground. Those of you who know Mazie the monkey face pug/poodle/terrier Princess will get some special time with our dog/child.

My personal goal this year is $28,000 but I’d love to get for $29,000. Yes ! Positive thinking. I realize folks can’t afford as much as they’d like to, so if you know of any organizations, people, businesses anywhere who have a chunk of money to offer, please let them know about our event.

I’m expecting the 5th Annual West Coast SPECKtacular Skydive for ALS to be a successful event financially, and an amazing opportunity to connect with others whose lives have been impacted by ALS. Even though it’s the “West Coast” skydiving event, we’re accepting donations from the East coast and…what the heck, we’re reaching out to all over the world.

This year we combined all three Skydance Skydiving groups to make sure our skydiving bash is a big smash !

By the way, disabled folks, like Gloria, can skydive too — your “jump master” just needs to know (ASAP) ahead of time so he can determine how to adapt the equipment for you : skydancedavis@gmail.com
If you have other questions about donations, potluck, host/volunteers, you can email me directly at: speckduval@gmail.com or text me: 310-508-7401 We must secure our spots on the plane now or they could be filled by people who don’t know what ALS is or don’t care about.
Call, email Skydance today (530) 753-2651 9 am to 5 pm to reserve your spot with a $25 deposit. What do you think about this ? Speaking of “Think” take a peek at my rockin’ life about two years before ALS (BALS.)
Think about it.

Thank you so very much for taking time to read and watch all of my….blah blah blah.
They don’t call me “Chatty Cathy” for nuthin’.
Cheers!

Cathy

Here is a link from a previous SPECKtacular Skydiving events at Skydance:
Here is a link to the article in the Sacramento Bee. The website includes a video.

http://www.sacbee.com/2012/05/22/4506864/supporters-take-leap-of-faith.html

The SPECKtacular FUNd focuses on familal ALS (FALS)

5th Annual West Coast Specktacular Skydiving for YFALS
Skydance Skydiving in Davis, California

For West Coast Skydive for YFALS · Gloria Samaniego Hale Gloria Hale skydives. She has done it three times already, and is planning to do it again in May of this year. Gloria also has ALS—yet that does not get in the way of her taking part in the exhilarating experience!
Gloria first learned about skydiving through her relationship with the ALS_Therapy_Development_Institute(ALSTDI) and their Young_Faces_of_ALS (YFALS) campaign. The YFALS campaign was created by a small group of people living with ALS who all share a disturbing characteristic; they all received their diagnosis before their 30th birthday.
Most of the emphasis on ALS is placed on those that develop the disease during midlife. YFALS was created as a community for patients of ALS, as well as their families and young friends. YFALS has since become a catalyst for accelerating research at the ALSTDI through fundraising events; such as skydiving. Gloria’s first dive was in 2012. She says that she was not at all nervous prior to her dive, and in fact did it with a huge smile!!! In 2013, Gloria raised over $30,000 for the ALSTDI through skydiving!
The third group jumping with is comprised of other families who have the SOD 1 mutation.The Mishork Misfits. This group was created to benefit the West Coast Skydive for YFALS taking place for the third consecutive year at Skydance Skydiving in Davis
They represent a family with an extensive history of familial ALS. This cruel disease has yet to skip a generation of the Mishork family. Many members of the Mishork family, both living and deceased, are currently or were previously carriers of the mutant SOD1 enzyme, a known correlated trait of familial ALS diagnoses.

Unopened Valentine

I’ve been working on this column for two weeks but the problem is not writer’s block, it’s more like writer’s diarrhea. I have so much to say about what Valentine’s Day brings to me, but much of the story must remain anonymous. Well, “must” is a loaded concept here: I chose not to use our names. No good will come from digging up the sorrow that we buried years ago. We closed that lid and covered it with flowers.

I’ve said too much already without saying much of anything. That dang writer’s diarrhea, my cup runneth over with nothing short and sweet. Well, this is short compared to usual columns, but it is not sweet, not even bittersweet

I won’t use the word “diarrhea” anymore in a silly way – it’s  time to get serious and leave my gallows and bathroom humor behind. Nope, even though I’m tempted, I will not play with my “behind.”

I hope this column is easier to read than it was to write.  After editing and more editing it morphed into “Tragic Valentine’s Love

Stories for Dummies,” or “How to Walk away from your laptop for Dummies.”  The full story could easily a best seller non fiction book. But the more I wrote in this column, the more I had to delete out of respect for others affected.

She was older than I and she was my idol when we were kids. She was so smart, kind, likable, lovable, and an excellent athlete who was tall and thin with no acne. Even my own friends would drift over toward her when we were playing in our yard or in our house. I was the “captain” and boss of everything and everyone, but she didn’t need to be loud or “in charge. ” Her vibe was so inviting and gentle the neighborhood kids just did what she suggested or quietly started on her own.

February 13th 1997

We knew she was struggling as she moved closer to her core. The memories, some real, some too painful to know the difference, weakened her physical heart that was already broken. Why did she keep trying when getting better meant being vulnerable ? That night she seemed weak and tired and barely giggled at my funny stories. She looked depleted from diarrhea and from something else- something felt empty, vague.

After she fell asleep, we brought in dozens the of roses in a vast array of royal reds and pink, boxes of the finest chocolate, toffee, indescribably addicting gourmet caramel popcorn, and we put Budweiser in the fridge to chill as cold as she like it.

During the previous four years she created something akin to an adult-sized crib for herself on her bed lined with more than twenty Teddy Bears.  Some stayed in bed with her and the others sat in their own special places so she’d always see at least one friendly Teddy. They all had their own names and histories, and they each had a Happy Valentine’s Day card to give her. In the wee hours on this Valentine’s morning, her Teddy Bear family grew by twenty new Teddy Bear friends who wanted to be named and loved and safe.

We expected her to open her eyes in the morning and be innocently surprised . The flowers, candy and Teddy Bears would embrace her from all corners of her room. When she woke up she would see and smell love, comfort and adoration. She’d smile a similar to a six year-old would smile and later,her thirst would be quenched by an ice cold Bud just as she liked it.

February 14 1997

We expected her to open her eyes in the morning and be surprised with pink-cheek delight, her eyebrows arched  accentuating her sweetness of heart.

But she was deeply sound sleep  so we didn’t bother her. We made veggie omelets wit extra cheese and meatless sausage that smelled delicious- surely the aroma would wake her up. I went inside her room and tussled her hair, it’s very fine like mine. Then I touched her cheek, she was cold, too cold. I shook her shoulders and shouted for someone to call 911. I tried to find a pulse in her neck.

She was already stiff. Cold. Stiff. Lifeless. Without soul.

So much for expectations.

FLAT LINE VALENTINE

At the viewing I waited until everyone else had their chance to do whatever people do when they look in the casket. I know what I do, but come to think about it,  I’ve never asked people what they do when they’re “viewing.” I tussled her hair just like I did on Valentine’s Day morning. My hands trembled as I took off my guardian angel crystal necklace and I put it on her folded hands.  I didn’t count how many of her Teddy Bears shared the casket with her, but they all seemed happy and comfortable and safe.

I loved her so much. She was my idol. I wanted to be like her. Everywhere she went men, women and kids loved her. Then it all came shattering down. Where did she go, long before she died ?

My Silent Valentine

October 21 1956  –  February 14  1997

The photo is mine. I made an “altar” for a friend of mine who just died two weeks ago. She died just a few hours after we left (she was in hospice.)

AJ 4 angel

 

 

 

Ah, jeez ! I am so far behind in with my Blong posts, aarrghhh. But as I say to my dear friend April Kamen, “as long I’m behind I know I have a future.”  I suppose we  could get all Zen about this and say “be here now” and  “live in the moment,” but then my joke doesn’t work. And I’ll just feel bad about my lack of recent  Blong posts, which is not Zen at all. Not that there’s anything wrong with not feeling Zen. Stop this ride, I wanna get off.

And just so you know, I would not be sharing “my story” on the Blong if I thought no one cared. So, thank you for your kind, compassion, and encouraging comments. When people come up to me (or down-whatever) and say “Hey I follow your Blong-  it really inspires me,” or something like that, I know that my time to die is not yet here. Because our community is so amazingly supportive, generous and loving, I feel responsible and fueled to give back to all y’all, and it’s wonderful to ride on this blessed ( tri ) cycle of love, living and dying.

Hm, after reading the previous sentence a couple times, I’m not sure if I agree with myself. Am I typo-ing stuff just because I feel “like I should ?” Nope, no, that is not what I’m doing. Maybe I’m a ping pong ball on my laptop keyboard, bouncing (or in my case rolling ) around hoping that I’ll construct a few paragraphs that spring from my heart into your heart. No that’s not write either. Ha ha ! That was a sophomoric play on words unworthy of taken up Blong space, but I’m leaving it in so this Blong post won’t be so short. I mean, come on, I finally post in my Blong, and it’s shorter than my middle fingers ?

( I’m not intimating any “f” words here; I use only my right and left middle fingers to typo, the other fingers and thumbs just hang around waiting for me to leave crumbs so I have something to eat. The myth is true: wherever I go, I leave a trail of little food particles.) That was a long parenthetical explanation. Should this be in parentheses too?

And speaking of eating, when I eat with my friends, family, strangers, imaginary playmates, I’m not supposed to talk while eat. That’s hilarious -I’m always talking, right ?  You know what I mean, most weekdays I’m home in my recliner, just the three of us: me,my laptop, and Mazie our dog/monkey/princess/child. Oh wait, my ” texting device ” (cell phone) must  be included too. I do not like talking on the phone and I never have liked it, not even as a chatty teenager, but texting is divine for a grrrl like me. I use my lift hand to hold it up, and my right index finger does the touching part. I’m sure there are different ways to describe my method of texting, but I’m just gonna leave it like this. And there you have it.

Enough about me, let’s talk about…ALS

As you know, we can talk and read about (me !) our loved ones, strangers,famous people  and kind of forget what  ALS actually is. Yesterday I was reading a recent research journal that defined ALS in a succinct and powerful way without being too wordy:

” ALS is a fatal progressive neurodegenerative disease that affects neurons in the brain and the spinal cord. People with ALS often become paralyzed and die within two to five years of diagnosis from respiratory failure.. There are currently no treatments on the market that prolong life or attack the underlying causes of the disease. There is no cure.”

On that happy note I’d like to share with you some photos that are in the “photos” section of my Blong, but maybe, just maybe, you haven’t seen them yet. I like them. I love them. And I bet I like you, too. Maybe I even love you .Whaddya  think?

Don’t go away yet….please stay… for now it’s pretty picture time! The first photo was taken in 2011 when I was recovering from pneumonia, or was that from pandemonium ? Maybe a bit of both. Here I am in the comfort of my hospital bed at home, surrounded with love from the hearts (and arms,necks, etc ) of Alyson Collom, Mazie Duval -Speck, and April Kamen

The second photo is of my dear friend Karina Dryer who I met at an ALS support group ( just another example of the “good things” about ALS.)

She’s coming from Roseville tomorrow so we can eat and not talk, wait, I mean I talk the whole time. She usually finishes her food and gets her car keys ready to make a dash for her van (see other photo) This time Mazie tried to go with Karina,so I bribed her ( Mazie,not Karina ) with some puppy jerky (not made from puppies, that’s sick.) The jerky comes from dehydrated squirrel thighs. But seriously folks, Karina is a bright light in my…other bright lights, and I truly love her.

The third and final photo is of Karina’s van after my birthday party at Sudwerk in Davis.That was a kick- butt, fantabulous place to have a birthday party, or any kind of party.  Hm food for thought ? Anyway, Karina and her wonderful hubby Neels, helped set up, and clean up after the party, and got to ride in the front seat while Karina was smashed in back underneath piles of the party paraphernalia. Hm, she said she didn’t mind,of course. While we were driving through downtown Davis we didn’t realized that one of the brightly colored Happy Birthday helium balloons was riding atop the van -somehow the string got stuck when we shut the sliding door.

That was the purrrfect way to wind down from the party, where once again I talked too much to eat anything. No wait, I ate one chip and one olive, and I licked the leftover frosting on Linda’s plate. When we got home, I crashed for a couple hours and woke up with a healthy appetite. At least I have a normal something !

Well, we did it, didn’t we. We made it through another Blong post. My next post will be about renewing friendships from long, long ago. Why wait for the funeral, right ?

Cheers & Chuckles,

Cathy

More details about ALS and how you can help at:.www.als.net   www.alssac.org

cathy alyson april mazie hospitalbedkidnap maziecathy &van

….And speaking about music and all…I had planned a caroling event on Sat the 14th, but now I need to change it to Sun the 22nd at 1:30 pm.  We’ll carol at one convalescent facility at 715 Pole Line Road or 45 minutes or up to an hour, and that includes pausing to visit & chat & hold hands with the folks living/dying there. this is our 20th annual Caroling parade  but this year I physically can’t do more than one venue.
Right now I’m visiting my sister Barb in Crescent City where I’ve been since  the 30th, and will be back Monday the 16th. (see the photos)

Well, first folks come to my apartment for an hour or 45 minutes before we caravan to Sierra Health care. We visit with each other, eat,drink and be merry- or Mary if we want to reenact the baby Jesus being born…who’s gonna cut the umbilical cord? Not Joseph, his hands are to shaky.BTW this is not a religious event and everyone is invited whether or not they can sing. Jingling jingle bells are music to the ears …to the folks there who can still hear..
After caroling everyone is invited to come back to my apartment to de-brief, share feelings/thoughts  of our experience, and we can continue eating and drinking and laughing/crying, hugging and kisses under the mistletoe–if we can climb up the big ol’ trees and cling perilously under those silly green things.*see below.
Well, I guess I should ask if you are interested in this before I complete this epic holiday prose…
 
Cheers &chuckles,
Cathy
 
*

This kissing tradition dates to 16th-century England. Mistletoe also has pre-Christian ties to Greek mythology and Norse legends. Ancient Druids considered the plant holy.

During the 18th century, the tradition of kissing under mistletoe gained popularity in America, as hosts hung sprigs of these greens in doorways. Ladies venturing under the mistletoe were fair game for kiss-stealing gentlemen. Today’s mistletoe kisses are freely given or taken by both men and women.

A pretty evergreen, with leathery leaves and waxy pink to white berries, mistletoe remains a popular Christmas decoration. Viacum album, originally from Europe and Philodendron flavescens, native in North America, are commonly found for sal..blah blah blah…

 

xmas 62 or63 id you gifts

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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