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…)

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.

Netflix, Stones & Scones

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When I get bored, or if I’m a little sad, I like watching documentaries on my laptop about old, historical things— like English castles, Russian tsars and evil Nazis dickheads. It’s calming and therapeutic… yet, cheaper than Xanax.

Today, I stumbled upon a documentary about Westminster Abbey on Netflix. You know that big, old Gothic church that Prince William and his wife, Kate, got married a few years ago? Yeah, that building. It’s been around for nearly a thousand years… and it’s THE place to get buried if you are super cool and accomplished. There are kings, queens, princes, dukes and even scientists— like Sir Isaac Newton and Charles Darwin. There are scads of writers, too, including Aphra Behn— who, in the mid-1600s was the first woman to make a living as a novelist, playwright and poet. #oldtimeygirlpower

Westminster Abbey is also the place where the kings and queens of England are crowned. During the ceremony, the monarch sits on this really old wooden chair that was built in 1296. The chair still exists today. It’s survived generations of termites, vandals, and the really fat ass of King George IV, who in the mid-1800s spent most of his time eating large amounts of food and shagging women— all while being addicted to opium. He was a real winner. #momoneymoproblems

The chair was designed to house a special slab of stone beneath the seat. This slab is called the Stone of Scone. It’s important to note that the name has nothing to do with actual breakfast scones, much to George IV’s utter disappointment. Rather, the stone was the seat upon which hundreds of years of Scottish kings were crowned a really long time ago. In 1296, though, King Edward I of England took the stone from the Scots so that it could become the coronation seat for his many future, royal, and sometimes tubby, descendants.

As you may guess, this did not sit well with the Scottish. It didn’t take much to inflame their ire during this time, but stealing their favorite old rock was an easy way to do it. In between eating haggis, playing bagpipes, and drinking whiskey, the Scots stewed about this horrendous act for hundreds of years— even after the two nations joined together under one monarch. The English refused their many requests to have the stone returned— unwilling to compromise with the plaid-wearin’, brogue-talkin’ heathens to the north.

Fast forward 700 years. (I didn’t promise this would be a short story.) On Christmas Day in 1950, four Scottish students broke into Westminster Abbey with a crowbar and snatched the Stone of Scone from beneath the seat of the coronation chair. Okay, snatched might not be the best word for something that weighs 336 pounds. Rather, they dragged the stone out of the Abbey on an old winter coat and managed to secret the slab of rock across the border to an eager, and joyous Scotland.

British police vigorously searched for the stone for three months before the Scots finally relinquished the stone in time for Queen Elizabeth II’s coronation months later. The boys that took the stone were pardoned and details of the investigation were plastered all over the newspapers. Yet, each side still claimed ownership of the Stone of Scone and its history. Eventually a deal was reached so that Scotland could keep the stone for most of the time, except during coronations… every other Christmas, and the 2nd Tuesday of the month. Like a divorced couple’s joint custody arrangement of their 336 pound baby. It was all very complicated.

Strike that. No… no, it wasn’t complicated. It’s actually very simple. England and Scotland, two very advanced nations and pioneers in the development of representative democracy, were fighting over a FUCKING ROCK. A piece of goddamn stone that you can find in any riverbed, on any hillside… hell, even in someone’s weedy backyard.

See, this is why history is so awesome. And this is why I watch historical documentaries to make myself feel better. Because even if I’m having a bad day, a sad day, or I’m depressed about what’s on the 5 o’clock news, I know that we humans have done stupid stuff all throughout our history. The dates and years on the calendar may change, but our stupidity does not.

IMG_3927And there is definitely something comforting in that.

Don’t you think?

Summer, Flip Flops, and Tony Danza

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Ugh. As I sit here typing this, the thermometer is registering 95°F. It’s barely May and only 4 days ago I still had flannel sheets on my bed. And now I’m sweating and my jeans are sticking to my ass. Why couldn’t the summer heat arrive gently? Like the slow bloom of a flower… or water dribbling down a clogged drain. Why, instead, does it have to be so blunt and nasty? Like a bull, or Steve Bannon, in a china shop?

I HATE SUMMER! There, I said it. I don’t like the heat, the sun, or even the clothes. I much prefer the styles of the cooler months— my cabinet full of scarves is a testament to that. Plus, I can’t wear most summer clothes, like shorts, because I sunburn in mere minutes. This isn’t dramatic hyperbole. One time I got a sunburned in the time it took to go from the front doors of the shopping mall to my handicapped parking space— which was IN THE FRONT. Yes, I really am that white.

Now that we’re on the subject of summer attire, I also don’t understand flip-flops. They seem unnatural and highly dangerous. Why would you want to walk around on something so unstable? It’s a shoe that’s barely attached to your body. You are one thin plastic strap away from disaster. It’s a good thing that I can’t walk, because if I had to wear flip-flops in the summer, it wouldn’t end well for me. First I’d get a bad sunburn on the top of my foot, then I’d fall and break my nose on the nearest object, like a ficus plant. It would be like an episode of The Three Stooges, only less funny and less Jewish.

If all that weren’t enough, the slapping sound flip-flops make is also decidedly unappealing. Do you intentionally want to sound like a walrus flapping their hands together? Because, I hate to be the one to say it, but you really do sound like that.

Anyway, thankfully I have air conditioning to help me during these trying times. It’s currently humming in a soothing way that reminds me of those noise-canceling machines that they used to sell at Bed, Bath & Beyond next to the display of soda-making kits that NO one ever buys. The same ones that have been on sale since 2005. If you are thinking of buying one, you might want to reconsider; I’m sure those flavored syrup pods expired back during the days when Bush Jr. lived in the White House.

Those were simpler times, though, weren’t they? We didn’t have a president with orange skin and hair… and Michael Jackson and Whitney Houston were still alive— so we could listen to their music without the sad pang of nostalgia. Those also were the days before the word taxi had been replaced by Uber. Before long the nerdy folks at Oxford will just drop that word from their dictionary entirely… and a hundred years from now little children won’t even know what a taxi is, let alone that it was yellow and usually driven by strange foreign men with accents— or Tony Danza.

IMG_3914It’s only May, though, so I better get used to this heat. If you need me, you can find me sitting in front of the fan, grumbling… and not wearing flip-flops.

Shoes, Spiders and The Perks of Being Me

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While it may not seem like it from the outside, there are definite benefits to being me. There are the obvious ones— preferred parking spaces, event seating in the front (should the venue be equipped for it), and being able to get away with first-degree murder because no one will believe that the perky girl in the wheelchair could possibly poison anyone with arsenic.

Aside from these obvious benefits, there are the not-so-obvious ones, too. Like my shoe budget. I rarely have to buy new shoes because each pair I buy will last a ridiculously long time. This is what happens when you don’t go walking around in your shoes. While Nancy Sinatra may have sung “These Boots Are Made For Walkin’,” she clearly wasn’t talking about me. My boots are made for sitting in my wheelchair while I do things like try not to stain them with dribbled spaghetti sauce. (This is a serious concern. My wardrobe is more susceptible to food-spillage than actual wear-and-tear.)

I’m not ashamed to admit that I still have two pairs of shoes from the 8th grade. I am not kidding. As I know that fashion is cyclical, I’m just biding my time until 90’s chunky heels are all the rage again. If acid-washed jeans can make a comeback, so will my Payless black leather loafers.IMG_3794

If you don’t believe me, I’ve taken this picture of my shoe closet. The average age of a pair of shoes in this closet is 9.7 years.

Anyway, being me is not all sunshine and rainbows. It can be challenging when you get an itch you can’t reach or drop something on the floor and you have to wait for someone to pick it up. Patience becomes a daily practice, an endeavor. It’s not an obscure or unknowable concept — like what the hell is really going on with Trump’s hair.

Yesterday, I had such a challenge. While I was on the phone with my aunt, I felt something weird on my neck. Thinking it was just my hair tickling me, I ignored it. A few minutes later, I felt it again. I looked in the mirror and I saw a spider crawling around on my clavicle… like it owned the place.

To say I freaked out would be an understatement. I hate bugs with a deeper passion than I feel for anything else on this Earth. And that is saying a lot because I really hate manbuns.

Nearly dropping the phone, I went to my dad and shrieked, “THEREISASPIDERONMYNECK! GETITOFFNOW!” With exasperated amusement, he flicked off the spider and it smashed on the knee of my pant leg— leaving a stain on the jeans that would be a reminder for the rest of the day of my traumatizing experience.

In his accented voice, my dad then scoffed, “Bah, eet was juust a leetle bug.

This was a total lie to try to make me feel better. But, I was the one that had it crawling around on my neck like a fucking Land Rover on safari. In my mind’s eye, heavily colored by my assorted anxieties, the spider was NOT little. And it never, ever will be.

I guess being me isn’t all fun and games…