I love Gumby but Pokey makes me want to die
“What happened to your arm!?
Oh, this old thing?
I fell — again. I am so lucky. I’m thrilled that I haven’t bashed my forehead into the edge of our dining table, or busted my head, neck and my backside when I fell backward into our bathtub. Sometimes I wonder if my real name is “Gumby.” I’m certainly as flexible as Gumby, and Pokey, too. But Pokey was kind of a doofus, so let’s just delete him from our minds.
Now that I’ve said that we’ll be seeing images of Pokey everywhere we go. Is that Pokey’s face on my pancake? My carrot raisin salad looks like Pokey running really, really fast. I brushed my teeth and when I spit into the sink I saw the shape of Pokey.
I wish I could turn back time and set up the video camera in the kitchen area and in the bathroom. Ooh noo, that sounds icky, and I need to go wash my hands — several times. Those are the two areas where I fall the most. Hmm, first question — why there? My first guess is that those areas have tile, not carpet. Tile is slippery, carpet is not, unless it’s made out of animal fur and the animals are still alive.
AAAaaahhhhhh , take that sentence away from me, so very far away !
These deductions might indicate that I have a future as a private investigator. Or I’m just a goofball with little future who meanwhile falls and walks like a drunkard. You might not know that prior to August 12 1991, I was a drunkard, and now you know and you can spread the good news. If you’re tired of being an alcoholic, yet you really dig the way it made you walk, take a look around and see if you can get some ALS — maybe at the Dollar Tree ? (This was a poor attempt at satire since most people have no idea what ALS is, let alone how freakin’ expensive ALS can be if you’re trying to stay alive with breathing equipment and other buttons ‘n bows.)
Yes, I know, the gallows humor really upsets some of you, and I totally understand. Humor is my magic potion, and I’m happy to share it. But if you clearly cannot be in a “hardy har har” mood, let me know directly, so I can change the flavor of the conversation — before it’s too late.
Don’t you just hate it when you want to apologize to someone, and then one of you dies before you say you’re sorry? Um, you know what I mean; if you’re not the one who died then the previous question makes sense. But if you’re the one who died, this subject is kinda dead.
I just reviewed what I’ve typo-ed so far and it’s clear that I totally got distracted — what a shocker! So let’s see, I was talking about setting up a video camera so I could watch myself fall — I mean, I can watch it after I’ve recovered from the fall and have completed the proper care: ice 20 minutes on, 20 minutes off, generously rub arnica gel onto the bruises, bumps and my cheeky chipmunks, or chipmunk cheeks. Never lost the baby fat in my face and that makes me so freakin’ mad. Not!
Besides getting a good laugh when watching the video, I could learn how to prevent to the falls. We already know that my random vertigo bouts contribute to losing my balance, which can lead to falling — there’s that genius at work again. I’ve been seeing an excellent physical therapist through Sutter Health. Her name is Amy and she’s a total pro, but this silly ALS prohibited her from kicking the vertigo outta my body.
To do the “standard” maneuvers for positional vertigo, I need to have good, or at least average, neck muscles. Because of the ALS, my neck muscles are like soft noodles. Also because of my weakness in general, it’s hard to get the rest of my body in the correct positions on the table/bench and maintain that position without flopping over. My lingering vertigo is not “verti-gone” despite my clever word-smithing. Dang it!
So, um, where was I… oh — what am I doing to prevent my deliciously inspirational falls? I truly am trying to use my cane inside our teeny tiny apartment, and I don’t have a power chair — that comes later. My leg strength and balance vary from hour to hour, day to day, from morning to night, or did I overdo it the day before — who knows ? I’ve been very mindful about moving my head/neck slowly so as not to stir the vertigo, and so far the vertigo is still slumbering soundly.
If I’m walking long distance outside or in a mall (okay, I’m not a “mall grrrl”) — so let’s say I’m at the Monterey Bay Aquarium, I would use my electric scooter, but only if someone were driving me around in a van that can transport an electric scooter and a walker/rollator.
If there is no van, I can only use my rollator that easily transforms into a wheelchair when it’s too hard for me to keep walking or I’m just to darn slow. I bring a thin pillow to use as padding since I don’t have a butt anymore. Yup, I can already hear some of you saying “I wish I had that problem” or ” I’ll gladly give you some of my butt to sit on.” That doesn’t just sound right. (I attached a photo of my electric scooter, but I not a photo of my invisible butt — it’s so difficult to capture the essence in the proper light.)
Sometimes, let’s say Linda and I drive to the beach, I’m happy to stay in the car overlooking the ocean, the bluffs and the beach. Walking in the sand doesn’t work. Mostly I step, fall, step, fall, and even though it’s not painful to fall in the sand, standing up over and over does zap my limited energy. I can still delight in looking out upon the awe-inspiring waves, some of them crashing and bashing on the massive rocks as the spray tickles the air.
And speaking of tickling water, I have a chair in our shower so I can sit and hose myself off like an old dog. I’d rather be running back ‘n forth through the lawn sprinkler, but running is out the picture, and I should conserve the water, so it’s all working out perfectly. It’s not like the good ol’ days when we had squirt guns, Slip ‘n Slide, and rope swings into the river. I choose to accept the truth.
Tomorrow I’ll go to the lab at Sutter Hospital and have my zinc levels tested. Maybe the zinc is fine, but we’ll also strike gold! Tell you what, if we get rich with gold, I’m buying dinner and drinks for everyone in the Whirled!
Let’s see here, I’m sleeping well at night. I’ve done a few “experiments with sleeping” issues — just for fun, under Linda’s supervision. Just for the heck of it, I tried sleeping/napping in “our bed” on my side like I used to. It didn’t take long before Linda had to wake me cuz my breathing got all wacky, my body/limbs were spazzing, and I was making weird sounds like I used to when I was having nightmares and couldn’t breathe. I don’t need to try that one again.
I sleep at least eight hours every night using the BiPap the whole time. I use the small, portable oxygen canisters during the day if I feel winded or nauseated. I’m taking more naps, not on purpose — I just fall asleep, before I even know that I’m tired… Same thing happened to some of my other family members with ALS. This is quite common in ALS, so I’m not so special after all! My ego is gradually deflating, and that is a good thing.
I’ll be speaking at Sac City College class The Psychology of Death and Dying on Monday, April 29. This will be the 4th or 5th time I’ve told my story for this class over the last two years. It’s an awesome experience for everyone. Maybe if the class/hall is big enough, some if you can attend. I’ll keep you updated about the exact time, and which classes might have some extra seats.
Maybe scalpers will be hanging around the hall entrance promising to find a seat for you: “Yo, you wanna get in to hear this old chick talk about dying and sheeyat, yo! She’s friggin’ hilarious, and it’s phucked up, yo!” (I learned my white-ass street talk from obsessively watching “Breaking Bad.” That’s good TV sheeyat, yo!)
At the same time, I want younger folks to read my stories without a bunch of “F” bombs, so I try to express the authentic feeling of being phucked up without losing street cred.
It is 4 a.m. in Davis, California. I am finished for today. Come fly me. It’s free. It’s funny. It’s fabulous. It’s funsational! I think I just made up that word.
Chatty Cathy has done it again!
Cathy Speck is a Davis, CA native who has ALS (aka Lou Gehrig’s disease.) ALS is a fatal neurodegenerative disease with a 2 to 5 year prognosis upon diagnosis. She has an extremely rare type of ALS, genetic familial ALS, which means each of her siblings has a 50% of inheriting the disease which has already killed her mom and two brothers.
From 1993 to 2010, Cathy and her wife Linda Duval were well-known musicians locally and in regions throughout California. In 2009, Cathy was diagnosed with ALS, but Duval Speck and their band The Essentials continued to perform at ALS Benefits & community events. They released three CDs which will become collectors’ items since they can no longer perform or record: www.duvalspeck.com. you can hear samples of their music on the website.
Duval Speck’s last gig was an ALS benefit in Sept of 2010. Since Cathy can no longer use her singing voice or stage performances to advocate for ALS, or strive for equal LGBT rights, she redirected her vocal passion into the written word: www.iPinionsyndicate.com & www.cathydyingasliving.com.