Dimensions, Dictators, and a Whole Lot of Weed

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I’m not going to sugar-coat it, roll it in cinnamon, or top it with frosting. I’m going to be honest. The kind of honest that you usually only see from small children or really elderly relatives— but, rarely see from politicians or men that run around grabbing women by the ass.

Okay, here goes… The year 2017 was… just… straight-up weird. So weird that it made me wonder if we had somehow veered off into a parallel universe. I know you might think I sound loony. But, stick with me for a moment.

Stephen Hawking, the super-genius, theoretical physicist, writes a lot about this concept. He says that black holes could be portals to other countless universes— very much like our own world, but, just a little different. So, there could be infinite planet Earths… countless other cities of Patterson… and many versions of me.

This is a troubling thought. I wonder if all versions of me are as scared of spiders? Or, like pumpkin spice lattes? Or like to drive so fast in their wheelchairs?

I also wonder if all the versions of Patterson have quite as many palm trees? Or, as many pizza places? Because I don’t know if it’s possible for a town to have as many locations to buy pizza as we do right now.

Seriously.

Anyway, what if the Earth was swallowed by a giant, unknown black hole, and we slipped into another dimension? Maybe that would explain why 2017 was so weird… and it would also explain why Patterson suddenly seems to want so many marijuana dispensaries.

Between the record-breaking hurricanes, deadly earthquakes, and massive fires, it could be argued that Mother Nature didn’t care much for 2017, either. Nonetheless, we mustn’t forget the victims of these disasters— many organizations are on the ground now helping those that are affected. Donate time or money, if you can. Don’t be a Scrooge.

It’s important to note that not everyone has had a difficult year, though. North Korea’s Kim Jung Un spent the year honing his missile launching and nuclear skills. After scattering hardware all over the Sea of Japan and threatening the West with death and destruction, he still found time to attack a village of Hobbits with a potato cannon. So, all in all, it was a pretty solid year for dictators. Just ask Vladimir Putin.

We also found out that Americans can become obsessed with solar eclipses— so much so that they will call-in sick to work, and drive hundreds of miles to watch the shrinking sun through a peephole in a modified box of Honey Nut Cheerios. I suspect that many of these same people spent the prior year, 2016, chasing cartoon Pokémon on their smartphones.

So, I suppose this is an improvement.

Scientists made several discoveries this year, too. A new species of orangutan, a close primate cousin to humans, was recently discovered hiding in an isolated forest in Indonesia. It’s been a century since a new species of great ape has been found. So, this is an incredibly exciting— and surprising— development. After all, who knew that Donald Trump wouldn’t be the only new orange-colored primate to burst into the international scene this year?

As we say goodbye to 2017, here’s hoping that the year to come will be a healthy, safe and happy one.

Just watch out for those black holes.

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Nutcrackers, Holiday Decorating & All The Lies We Tell

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Around three weeks ago, I was in a store and holiday music was already playing. Even though I snorted in disgust at the prematurity of it all, that didn’t stop me from admiring a collection of miniature Christmas trees roughly the size of Kevin Hart. You’ll be happy to note that I didn’t buy one, but I seriously considered it.

That set my mind into motion— into thinking about the holidays and when I’d put up my own decorations this year. I always tell myself that I’m going to wait until after Thanksgiving, but that never seems to happen. It’s more what I tell other people if they ask me when I put up my Christmas decorations. I always chirp, “Oh, I wait until after Thanksgiving.” But, in reality, I’m secretly hunkering down in my house around November 15th with empty nutcracker boxes strewn all over my dining room table and a rim of peppermint mocha residue around my lips.

It’s one of those secrets that we all keep and then lie to others about. You know, like how many times a day we floss (which is never), how many times a week we empty the lint compartment in the dryer (which is not enough) and if we wash our hands after we blow our nose (which should be all the time, but never is!).

When you are disabled, like me, you have to rely on others to help you put up your Christmas tree. You have to cajole and charm someone into climbing into the recesses of your garage to pull out the 7.5 foot plastic tree crammed in a cardboard box large enough for Kim Jung Un to stuff at least two dead bodies.

I’ve had the same artificial tree for quite a few years now. I don’t like having a real tree. It’s too much commitment. I have a hard enough time remembering to water my two houseplants, I definitely don’t have time to attend to a needy spruce tree. Plus, I don’t want something that will drop needles and crap all over my living room floor. If I wanted that, I’d just borrow a toddler.

Each year, there’s always a big moment of dread right before turning on the Christmas tree lights for the first time. That sinking feeling of wondering if this will be the year that it finally takes a giant poop. I’m sure I don’t need to describe this feeling any further. After all, if you’re a San Francisco 49ers fan, you feel this nearly every week.

Anyway, the last couple of seasons, my tree had begun to show its age. The lights began to dim, and large segments of the tree would randomly go dark, only to perk up again hours later. So, this week, I decided to take the plunge and get a new one. My new tree seems okay so far, but the branches were so smashed from being in the box on the long journey from China that the branches required considerable fluffing to stop them from resembling large marijuana joints. I suppose that’s one benefit to real trees, though— they are already fluffy.

However you may spend this holiday weekend, have a safe and happy one. If you need me, I’ll be here fluffing my tree, consuming large quantities of stuffing, and canoodling with my nutcrackers.

IMG_4507 (2)Happy Thanksgiving!

Elizabette Does Tinder

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I like to be hip. I like to be cool. I like knowing the latest lingo, the ‘words on the street’— you know, like baesnatched… and I-Hope-Harvey-Weinstein-Gets-Ebola-And-Dies.

Stuff like that.

I also like to be in-the-know about technology. I want to know about the most recent apps, smartphones and those little fancy robots that run around your house to vacuum up all the Pringles crumbs you left on the floor after your latest Netflix binge. These things are important. And I must know them.

If I don’t know how something works, I feel like I’m missing out— like that one time I wanted a Polly Pocket for Christmas in 1991 and didn’t get it (even though ALL my other friends did). So, this “fear of missing out” leads me to want to try new things. But, this isn’t always a good thing.

For example, a few years ago, I tried watching Game of Thrones. Everyone had been raving about the show… It was a phenomenon unseen since Michael Jackson moonwalked across that stage in 1983 (before he got creepy). So, I borrowed a disc of the first episode of the hit HBO drama, put it in my DVD player, and hit play.

And I lasted about 17.5 minutes before I turned the damn show off.

Holy shit, I have never seen so many decapitations in such a short amount of time.

I mean, I had NO idea what was going on in the plot or who the hell those headless people were, but I had already seen too much of their blood gushing from their spinal column. It’s important to note that I have to be more invested in my characters before I’m willing to see their bodily fluids shooting into the air like the Yellowstone Geyser. And 17.5 minutes is not long enough for that to happen.

Anyway, my experience with Game of Thrones taught me that perhaps all trends aren’t always great. Not all bandwagons are worth climbing on.

The other day, was looking at the App Store on my iPhone looking for a new game to download. Near the top of the most popular list was the social/hookup/friendship/relationship app Tinder. I had heard of Tinder, but really had no idea how it actually worked. My interest was peaked. If it was at the top of the download list, it was worth learning about. I would be one of the cool kids! I would be in-the-know. It would not be like the Polly Pocket incident of 1991.

So, I downloaded the app and set up an account. A person can add a couple photos and write a really brief bio of themselves or their interests. The app then shows you the profile of folks within a 50-mile radius. You swipe to the right if the person seems interesting— you swipe to the left if the person isn’t your cup of tea. If you and another person both swipe to the right, it’s called a “match” and you’re able to type a message to that person (if you want to).

It’s a very simple premise… One quick decision. It’s like cleaning out your closet. Do you want to keep that old Green Day t-shirt, or throw it away? Dump the shirt in the trash? Swipe left. Keep it to see if you might wear it when you need to clean the shower with bleach? Swipe right.

So, I started playing the game. Err— I mean, using the app. It’s very fun and addictive. About 95% of users are trying to impress folks with their gym selfies (why must you stand in front of a mirror each time, dude?)… their sky-diving photos… and their motorcycle portraits. Swipe left. Swipe left. Swipe left.

As fun as it was at first, after a few hours of using the app, I very quickly found myself becoming increasingly judgmental in real life.

At a gas station, I began commenting on someone’s questionable parallel parking ability. Swipe left. Then, I criticized a guy for wearing a baseball cap with the sticker still on the bill. Swipe left. I rolled my eyes when a friend on Facebook used your instead of you’re. Swipe left. At a restaurant, I inwardly cringed at a lady for her unflattering hairstyle. Swipe left.

I was out of control.

I quickly realized that it was Tinder that had turned me into an intolerant and heartless version of myself. If I wasn’t careful, I’d turn into something really horrible. Like an Olsen Twin.

Enough was enough. So, after having the app on my phone for a grand total of 47 hours, I deleted it.

There are some trends that just aren’t worth it.

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Hurricanes, Pregnant Pandas & Kardashians

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It’s been an intense 9 months. Between qualifying for the nusinersen treatments, waiting to get the ‘greenlight’ to begin injections, and then enduring the hectic schedule of getting my first four loading doses, it’s been a crazy ride. While Hurricane Spinraza was slow to arrive, it gained speed at the end and has packed quite a wallop. A positive, encouraging wallop… but, a wallop just the same.

Perhaps it’s too soon after Harvey, Irma, and Maria to make hurricane metaphors— but, I’m going to do it, anyway. If President Trump can pitch paper towels into a crowd of desperate Puerto Ricans like a carnie at a state fair, I guess anything goes.

Physically, receiving these injections isn’t easy. There’s discomfort, soreness, — and yes, sometimes pain— from the actual treatments themselves. There’s the exhaustion from the long traffic-ridden drives to and from Stanford. It’s a physical challenge. Surprisingly, though, an additional improvement that I noticed after beginning my injections? My residual soreness/pain resolved itself more quickly with each and every treatment. My body felt just a little tougher each time.

Despite the physical challenges, very few people discuss the emotional challenges of this Spinraza journey… especially for those of us that have lived with spinal muscular atrophy all of our lives. So much energy, especially by medical professionals, is focused on our physical health, that our emotional health can be neglected. But, these needs are just as important. The last nine months have taught me that.

Those of us with SMA are expert jugglers. We balance many things in our lives… work/school, family obligations, friends and the management of our care needs— all while keeping track of the pregnant Kardashians. Which is seriously hard work. I keep waiting for one of the reality stars to put up a live pregnancy camera in their house. You know like the zoos do when they have a pregnant female panda? And everyone livestreams the zoo camera online in the days leading up to the birth in the hopes of catching a glimpse of the pink squirming glob that comes out of her panda uterus?

Yeah… that.

(Think of the ratings, Kris Jenner… just think about it.)

Anyway, we SMAers can handle a lot. It’s challenging to juggle our usual tasks— but, we do it. Because we have to. But, when you add in the giant, heavy ball that is Spinraza, it’s impossible for us to keep all the other stuff in the air without dropping some shit on the floor. This is unfortunate because I literally can’t pick up any of the shit I drop on the floor. I have to wait until someone comes and picks it up for me.

After my last loading dose, I physically and emotionally crashed. I went into hibernation— like one of those mama bears that Sarah Palin rattles on about. For about a week and half, I didn’t want to do ANYTHING. I wanted to drop all my juggling balls and sit in the corner and watch episode after episode of the Gilmore Girls. Because if anyone could fix my problems, it was Lorelei Gilmore.

So, I wallowed. And stewed. And fretted. And took some Xanax.

This went on for a while. But, then it started to fade away. I felt the muscles quivering in my arms— reminding me that I had $500,000 swirling in my spinal fluid. It was time to get to work. I had fucked around for long enough.

I started exercising my arms, wrists and hands— with stretches and small weights. I began lifting things more easily than I had done in a while. While in the car, I held a water bottle to my mouth and drank (without a straw!). I lifted a one-pound bag of dried split peas from my lap to my desk— something I hadn’t been able to do at my physical evaluation at Stanford in February.

Things were happening.

So, now I’m trying to make these things part of my routine. I sit at my laptop (while I’m watching Netflix), and do my weird exercises. I’ve discovered that music isn’t my motivator… but, good o’ streaming TV does the trick!

Just maybe not a live Kardashian cam…

There’s only so much a person can handle.

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xoxo

(Please “follow” my blog for more updates…)

 

 

 

 

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That 70’s Show

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I’ve heard it said that fashion is cyclical. What was once in style is sure to become fashionable again— if you just wait long enough. While I’m not sure if that’s always the case, I think the cliché is more true than not.

I’ve noticed that over the last few years that the color palette of the 1970s seems to be creeping back in vogue. While I wasn’t alive during that decade, I’ve seen enough of my parents’ Technicolor photographs to verify this as accurate. You know those little square Kodak photos with rounded edges featuring your relatives with well-coiffed hair and bright floral outfits?

Yeah, those things.

I’ve been seeing lots of clothes and decor with those colors recently. And in places where, frankly, I’d prefer they weren’t. For example, a couple of years ago, I lamented a paint job that had been completed at my doctor’s office here in Patterson. When I told my doctor that the color of his building resembled the shade you’d find inside a baby’s diaper, he told me that he had no part in selecting that particular color palette. While this reassured me of his decision-making ability, that hasn’t stopped me from having to look at those colors each time I go for a flu shot.

I regret to say that this 1970s color invasion has claimed another victim. Today, I had a few errands, so I had to stop by the bank. I hadn’t been inside the bank in quite some time, so I was too busy saying hello to the nice ladies that work there to notice that the interior had undergone a redecoration. Once I was in line for the teller, I looked up and felt my nose instantly wrinkle in dislike.

My beloved bank had been painted a shade of yellow that, if seen in a toilet bowl, Dr. Oz warns us is a sure sign of dehydration.

I mulled on this revelation for a few minutes— looking around the walls as if expecting to feel differently about the color. Once it was my turn at the teller, I nearly asked her about it, but I stopped myself because I didn’t want to make the staff feel bad for having to work at a place that resembled a urinary tract infection.

However, since they are probably reading this column right now, it’s too late for me to worry about that at this point.

In conclusion, I’d like to add the following: I am not the most fashionable person. My sense of style is highly circumspect— just like my ability to walk, which is decidedly nonexistent. So, I’d take my fashion opinions with a hefty grain of salt— just as you would all the things that come out of Donald Trump’s mouth.

I’m sure these buildings and these 1970s colors are super chic— and I’m sure real, honest-to-goodness designers made the color choice. I’m also quite sure that many people must like them.

BIMG_4228ut, definitely not me.

Messy Drawers, Cassette Tapes & Vladimir Putin

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There’s no right or wrong time to clean out a messy drawer, or that one cabinet that hasn’t been touched since audio cassette tapes were still a thing that people actually used. Don’t mistake this as a diss on cassettes— nothing could be further than the truth. I used to love to rock out to Michael Jackson’s Thriller album on my mint green boom box. In fact, I eventually wore the cassette tape out and had to use some of my piggy bank money to buy a fresh copy at the mall. This was a time when you had to actually drive to the store to buy music— so it was a serious commitment. You had to really want something if you were willing to make your mom drive you 40 minutes to the Vintage Faire Mall to get it. After all, in the 1980’s, the only thing you could download from a Cloud was some rain.

Cleaning out an old drawer or shelf can be a therapeutic experience. I know I always feel better, lighter, and calmer when I can de-clutter something. That’s a fact. Unloading possessions is deeply cathartic. While I know that some people get the same feeling from yoga and meditation, I suspect Vladimir Putin gets a similar zing of excitement when he invades Ukraine and polishes his knife collection.

Sorting through old stuff can yield surprising results, too. Once I found a $20 bill in a nylon fanny pack at the bottom of my dresser. Remember fanny packs? Yeah, I wish I didn’t, either. Aside from being horrified that I actually wore the damn thing, I instantly felt like I had won a prize by discovering the twenty bucks inside. It didn’t seem to matter that it was actually my own money, I was still a Powerball winner in my mind.

A few days ago, I cleaned out an old drawer in my bathroom. Inside, next to a crusty bottle of Johnson & Johnson Baby Powder, and in front of a curling iron that hadn’t been used in over a decade, I found a little box. Inside? My high school class ring! I hadn’t seen the ring in years, in fact, I had forgotten all about it. But, alas, here it was in my hand, smelling slightly of old talc, yet none the worse for wear. It was like finding a $20 bill, only way better. Vladimir Putin probably gets the same feeling when he imprisons dissidents and runs around the Kremlin naked.

So, the moral of the story is this: don’t wait to clean out that one messy drawer in your house. While you may only find old buttons, some matchbooks, and a few dried-up pens, there’s a chance you could discover something awesome. Like a $20 bill, your high school class ring, or— if you’re Vladimir Putin—your secret stash of Soviet-era nuclear weapons.

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If only everyone could be so lucky.